FEARLESS FEMALES

New Website: Fearless Folks

2009-06-21T19:11:00.010-04:00

Hey Everyone,

I just wanted to let you know that I have a new website called Fearless Folks. http://www.fearlessfolks.com/

It's sort of a spin-off of Fearless Females (only not as sexist!! ;) and the beginning of my second year of blogging (wow! a whole year has passed since my very first post!!)

So I will be blogging at fearless folks from now on.... And I must say that I'm excited about the new site, even though it has taken me about 3 months to get it together.... not much of a technical person here, but I'm learning as I go..

So please feel free to join me at http://www.fearlessfolks.com/ (I hope you do!!) and feel free to leave a comment and let me know what you think of the new site!

And thanks for reading!!!!!!!!

........... my wonderful fearless friends!! :)

A cat, a mouse and a chipmunk…

2009-06-18T08:43:00.007-04:00

My cat is a killer. For those of you who have a cat, I think you know what I mean. For those who do not own a cat, then I must explain…

We have two cats, one is Coco and the other is Kimmy. Nick named Kimmy as we were taking them home for the very first time, and I helped Meghan name Coco. Actually, I’m being too nice, I named the cat because Meghan doesn’t really give a darn about the cats. Don’t get me wrong, she’s not mean to them, but let’s just say they simply coexist. However, Nick is just like me and loves his cats!

I do love cats and have always felt a special connection to the ones I’ve owned. But I must say I’ve never actually had two cats together like I do now. I had one growing up (Puddy….uh, yeah, I know! But not my idea!!!) and then I had one when Nick was a baby, Alley, until she got hit by a car….in front of my face…crossing the busy road that we once lived on….just awful.

Then we got another one—a stray from the wild (or under our porch) and that seemed to have adopted us, so we took him in and named him Sake. (I was addicted to Japanese novels at the time...but the wine isn’t bad either!) But then he, too, got killed by a car…same house, same road…different car, so we moved.

Then we adopted one-year old Coco and Kimmy on the first anniversary of 9/11, and safely live in a family friendly subdivision. We were actually hoping to adopt a kitten at the animal shelter, but when we got there the cat had just given birth to kittens and they were much too small to take (ever see newly born kittens? very small and delicate) and our cats had just been turned in that day from their previous owner (who inherited an elderly father and was allergic to cats) so we took them in. Unfortunately they came to us as outdoor cats, and even though I tried (for three whole seconds) to make them indoor cats, I failed. Now we have snobby and mean Kimmy who wouldn’t be caught dead catching anything that moved about the wild. But her sister, Coco, is a different story: she’s a cold-blooded killer!! Of course I am talking about the quintessential field mice, but I’m also talking birds and baby chipmunks, too! (Oh, those little chippies are so cute; it just kills me to see them dead at my doorstep.) Ugh!!

The first time she caught a little chippy (as I like to call them) and brought it back to our door, while crying her I’ve-got-something-delectable-in-my-mouth-for-you-because-I-love-you cry (again, if you own a cat, then you know what I mean), I couldn’t believe it, a poor little chipmunk. And oddly enough it looked just like my cat. My cats are calicos and if you look at a chipmunk, they look the same. I thought, Gee Coco, your killing your own kind! A bit disturbing if you think about it! So while I sat mourning the poor little dead thing, and giving Coco a haunting look, its lifeless little body with it’s twisted little head got up and scurried away. It was so surreal. The chippy that looked dead with a broken neck was simply playing dead from Coco the Killer--and very well too--because it rescued itself.

Hallelujah and a newfound respect for the chipmunk life! Oh, now I’m thinking of Chip and Dale. (Umm…the cartoon characters...not the naked men dancers!! But, hey, I do like the way you think!!) But those cute little fellas (I’m still talking chipmunks here) are smart little fellas, and every time Coco’s got a new one, I bring Coco in and rely on the chippy to do its thing and wake up from the dead and dance away into the night!! And unfortunately the success rate is not 100%, but at least the odds are better than the mice have! Yeah, what’s up with that, Jerry!!?

Kimmy and Coco (Coco tired from all the killing!! ;)

An overwhelming view of the world (sensory overload)

2009-06-17T08:30:00.012-04:00

Nick is absolutely petrified about walking the halls of his school, and after a quick interview with him, this is what I’ve come up with.

He finally told me that his speech class teacher made him go back to his regular class by himself, which is walking down two large hallways to get to his class—the safety zone.

I asked him what had happened on his journey through 2 halls…did someone upset you? Tease you?

He told me No, but he did tell me that the other kids bother him.

“What did the kids say?”
“Nothing, they just bother me.”
“So you walked the halls by yourself and none of the kids said anything to you?”
“No, but they just bother me.”

The only conclusion that I could come up with, after this interview with my not-so-articulate boy, was that he most likely became very overwhelmed (sensory issue) by the rush of other kids walking through the same halls trying to get to class on time. I imagine that the speech teacher let him leave to go back to his classroom at the sound of the bell, and the start of a new class -- for all. And roaming the halls with a flood of students rushing by him was probably so overwhelming (sensory overload), that he got scared. I imagine it’s like a little boy who had temporarily lost sight of his mother at a New York City subway station and trying to make his way through the flood of loud and obnoxious people without drowning.

I asked him what it was like walking by himself.

He got very upset and said, “It made me very nervous,” he said, clearly distressed.
“Did you get upset, did you cry?”
“A little bit”
“But you made it to class all right and you were fine?”
“Yes, but I’m not fine...”

“Okay buddy, I’ll write a note.”

And thank God that this is the last week of school, because I think we both could use a break.

Anxiety or Manipulation?

2009-06-10T09:16:00.009-04:00

Nick didn’t go to school yesterday. Actually, lately, I feel like it is all I can do to get him to go to school. The reason why I gave him the day off, or let me rephrase that, let him stay home, was because he had a field trip. I clench my teeth at this because I really wanted him to go on this trip. It was to Boston and the State House and then to Castle Island. It would have been a wonderful learning experience. However, he was very nervous about going—for some reason—so I let him miss the event. I hate that he didn’t go, but I didn’t want him to associate a field trip and a fun learning experience with an anxiety attack.

Good mommy or bad mommy?

Sometimes a mom has only a few minutes to make a decision like this one, and sometimes it will be the wrong one, but at least it’s called doing the best job I can.

What really beat me up about this decision was that if I forced him to go he might have had a good time. He’s been on other field trips and they all turned out fine. Not forcing him gives him the option of not doing something that he should do and, thus, not helping him deal to overcome his anxiety during social events.

Now comes in a timely trip to his therapist yesterday afternoon, and she firmly agreed. We actually had a good conversation about when, and when not to avoid situations that cause anxiety. I brought her back to when Nick was in 5th grade and when he had his first anxiety attack. He was so troubled by something that happened in gym class (boys competing to win was, I think, the gist of it) that he would become anxious when he had to go back to gym. Unfortunately, his anxiety peaked to such a level that he hid under his desk at school and brought tears to his teacher's eyes. She called me and we had an emergency meeting with an autism therapist (a doctor who came out on a favor by me) to observe Nick. (This doctor was actually helping me with Meghan at her school at the time.) After spending time observing and talking with Nick, he discovered that when Nick was near the gym (or even near the doorway walking by the gym) he would panic and run as fast as he could away from the door and down the hall. The doctor told me that it was best not to have him attend gym until he was on medication for his anxiety. And medication was an absolute must.

Says who? Says that doctor, his therapist and his shrink…Yup, I got three opinions,
and keeping Nick from attending gym because it was a real trigger for his anxiety—at least until he was on meds—was the right thing to do in this case, because forcing someone to deal with this form of extreme anxiety, before he’s on medication and getting therapy to help work through the problem, could be like pushing him to the point of emotional breakdown.

So, henceforth we welcomed our dear friend, Luvox; the miracle drug that has helped Nick become capable of not only resuming gym class, but becoming a better participant in his classroom, to boot.

Note: not a drug pusher here, but, demonstrably, Nick needed to take the edge off of a debilitating anxiety disorder.

Now back to yesterday’s problem; I should have told him that he had to go on the field trip and not have allowed him to, uh-hum, manipulate me just because he didn’t want to go. And as for this newfound skill of manipulation, I must say: good for him, he’s becoming a creative thinker!! (Hey, looking for the positive in every situation, right??) But I must add to his credit, he doesn’t always avoid going on field trips or other events; in fact, he had a field trip last week and went along just fine. And he hasn’t missed an excess number of school days, either. Perhaps more than I would have liked him to miss this spring, but it seems that he has developed some additional anxiety issues that we are currently helping him work through. So I give him praise for dealing with the burden of anxiety, which I hope will help him become a stronger person in his adult life.

Here, I must give kudos to his teacher for helping me with his anxiety issues this spring! She’s been providing me with email updates and helpful ideas in alleviating his anxiety, including finding a quiet place for him to work when necessary, and even supplied him with a box of foam earplugs for when school becomes too loud.

And hey, it does take a village to raise a kid, especially a kid with ASD!!

Understanding anxiety click here.

Tantrums and destruction can occur out of the blue

2009-06-09T08:51:00.008-04:00

On Friday a few hours after Meghan got home she started freaking out (a sloppy, but easy way of saying that she was out of control and I needed to get away from her, and fast). I was sitting next to her in my room, just hanging out with her on my bed, watching the news and enjoying a relaxing moment together, like we’ve done so many times before. But then, out of the blue, she started pulling her hair, contorting her face and making angry nonverbal noises. It was a horrifying sight. What was different from how she might have been before she went away to school, was that she was only hurting herself, not grabbing my hair and neck and pulling and pinching me in a similar fit of anger, as she so easily could have done at that particular time. As I walked away and down the hall, I could still hear her freaking out, yanking at her hair and biting her hand. It was awful to listen to and I was wondering if the room that she was in even had a chance against her wrath.

But, she soon left that room and starting running down the hall toward the kitchen, where I was standing. And then I knew.

I immediately left the kitchen and ran down the few steps to the front door. As I was making my way to the foyer, I felt an all too familiar feeling on my head: it was the remains of a cup of ice water and, I think, an apple, that came crashing down on top of me, and I knew from this—an all too familiar sign—that she was smashing-up the kitchen and “in the zone” of real anger. We have a contemporary-like style home and the kitchen has a balcony that is open to a stairway and foyer below, and because of this, and when Meghan is having a temper tantrum, I am in the habit of protecting my head from any flying food or objects that were once laying on the kitchen island, and that Meghan was now thrashing around.

Just before I ran outside I looked at Nick, who was at the next level below (the family room), and told him to take cover, and he did. Now how terrible is that? Huh? I have to give my son a codeword that means Meghan is flipping out so barricade yourself in whatever room that has a door. Like a warning of a sudden tornado ripping through the house, so take cover!

I ran outside and cursed myself for not grabbing a phone. But at that time Meghan was standing at the doorway where she was pounding on the front glass door, swinging it violently against a plant urn, and getting angrier by the minute. I was thinking about getting into my car to protect myself, but then thought against the idea for fear that both my kids would think that I might drive off; or that Meghan would pound on the glass window of the car and I would feel trapped.

Then I looked up and saw her standing at the doorway, yanking and pulling out clumps of her hair so brutally that it scared the hell out of me. It was one of the worst scenes I’ve ever witnessed with Meghan.

Don’t get me wrong, before she went away to her school she would come after me and go for my jugular. Literally. But then it would be over. But this scene of self-inflicting pain: pulling out her hair in clumps and biting her hand so hard that I could see blood on her hand, was so violent that it was hard to watch. I was standing outside in the pouring rain with no coat, no shoes and no phone, just trying my best to get her calm. If I had a phone, I was actually contemplating calling the police for the very first time. It was that scary.

Meghan was beckoning me to come to her and I wouldn’t for fear of being attacked. I mean, she was still “in the zone” of anger, so I managed to run around the back of the house, discarding sharp planting tools that were left out from earlier that day along the way (sounds both disturbing and comical doesn’t it? but don’t get me wrong, I’m am not kidding.) I think I even joked with myself: Hey, lose the weaponry, get rid of the hoe; wouldn’t want Cujo extra armed!! I then ran inside from the back sliding doors and grabbed a phone to call my husband and said: "get home ASAP"--another codeword. ETA: 30 minutes.

Meghan went outside to the front, grabbed a glass that was on an Adirondack chair (one that I had out earlier) and threw it on the driveway to break it into shards of glass, thankful that she didn’t aim it at the house or car window. At that point I really felt like I had no choice but to lock the front door and lock her out.

She then started banging on the front door, hard at first, then harder; turning and wiggling the door handle so hard that I thought it would pop off. I knew that I had to try to encourage her to come inside from the back, that way she would have time (and a walk) to calm herself from her angry state because there was no way I was going to unlock the front door and have nowhere to run to get away.

Sounds like a violent intruder trying to get me, doesn’t it? Sometimes I think she is.

I was also hoping that by being locked out she might think it was punishment for her horrific acts and bullying. But at the same time I was worried that she might get even angrier, so I ran out the backdoor, running in the rain with bare feet and getting soaked along the way, while rechecking for more random weaponry (I think you would too) and finally persuaded Meghan to follow me to the back yard, which she did after a few minutes, but it took a few minutes. Once back in the house, she starting cleaning up her mess almost immediately-- a good sign of calm, and of atonement because she knew she did wrong. But I was still standing outside, shivering and watching—just in case I needed to get away.

I know I sound like a wimpy mother to my 14 year old daughter, but I have had the experience, on more occasions that I care to remember, of being pinched, bitten, bruised, and hair yanked out of my head to fear.

Just a late afternoon at our household! What’s yours like!??

Humor, humor is very important, you know!

I also want to point out that these “episodes,” or her tantrums, can be very random. Sometimes I can almost predict when she is, or just about to become upset--usually a sensory issue: loud sounds, or an unpleasant feeling on her body. I think the antecedent of the previously mentioned temper tantrum was either from the rain (she was outside swinging on the swings when it started to rain), and her hair was wet and perhaps bothersome to her at that particular moment. So bothersome that she couldn’t handle the sensory overload, if this makes sense to you.

And please note that these tantrums are upsetting to both mother and child (and others within the household); they are violent and destructive in nature and not to be taken lightly. I exhibited bits of humor in this story because that is how I handle my life in these situations. Humor makes an upsetting life or situation a bit more manageable and “doable” in the moment.

A Dear Mom Letter

2009-06-05T13:11:00.005-04:00

It is true that Meghan may never talk. She can kinda say words, but to make conversation will be a challenge for her due to the severity of her autism. However, she is learning to spell and type in her computer everyday, so I know that even though she cannot speak using her voice, she will certainly (hopefully) learn to speak using her written words.

I actually fantasize about this all the time, as you might imagine. I mean think about it, I have never had a conversation with my daughter and she’s 14 years old. We communicate using some words, but mostly by using her communication book with PECS symbols or by gestures. And if you are aware of PECS and other gestures, then you know it’s not the most comprehensive form of communication!! So I am thrilled that her school has supplied her with her own laptop computer and special software to help her learn to write. She still has a long way to go because she doesn’t understand most words, sentence structure, and what it all means; but we are hopeful because she’s smart.

Which takes me to my next thought: I wonder what she will say when she is able to write for the very first time. What will her first written thoughts be for the entire world to see? Thoughts and feelings that have been unexpressed for over 16, 17, 20+ years will finally be unglued and released. What an historic day that will be for her! Understanding that she has the ability to communicate in a way that she never thought possible. To see her thoughts written out before her—a power that she had only known as a freedom for the rest of the world, and one most taken for granted.

So what would she say? This I cannot say. But I, of course, have fantasized that her very first letter might look something like this example that I will call: A.

Dearest mother,

I just want to say thank you for all that you have done for me over the years. I know that you have only wanted the very best for me and for my future and I love you with all my heart. I feel so free and liberated now that I can finally communicate my feelings and innermost thoughts and I hope to write wonderful letters to you everyday. Let’s email, mom, and get to know each other better.

Love always,

Your daughter,
Meghan

Ahhhh! And so, so sweet! And okay, a bit of an exaggeration on my part, but it is my daydream, after all!! And notice how I would finally be able to have a more rewarding relationship with my girl! It’s like my long lost daughter finally showed up one day to say hello.

But then some horrible ugly thought begins to rear its ugly little head (of course, my nasty alter ego) as I sit there and I think, what if her first letter doesn’t look anything like that one… wonder if it’s something entirely different? Usually a mother’s negative thoughts revolve around only a few things: I’m getting married, mom and I’m only 17!! Or I’m pregnant, mom and I don’t even know who the guy is!! Or how about the classic: I hate you, mom. No, I’m no different from those other moms of a growing teenager except that I think that her first letter just might be to the world and revealed while we all await silently and excitedly hovering over her computer as the words are carefully typed out …

Dear Everyone,

Now listen up all you motherfu****. I am so fu**** bulls*** that I’ve been mute for all these years and now I’m not going to take your fu** bullsh** rules anymore….

I will stop right there because I think you get the idea!

Ugh! But, I’m just a mom thinking of all the possible scenarios, like any other mom would do. But what if her first letter looks more like B than A. Then what?

A silenced room?

People scurrying about as quickly as possible trying to trade in her speech therapy for anger management!!?

What would people say to me as I walk the halls of her school? “Hey, heard Meghan can write now!" (Snicker…snicker…snicker…)

Or “Hey what was Meghan’s first word: f*** or bulls**** ?” (snicker, snicker)

This is something only a nightmare could produce, but it has crossed my mind on more than one occasion.

But all I can say in my defense--because a mom always blames herself for her child’s indiscretions (if that’s what we will call this)-- is that Meghan’s very first words were already spoken and were nothing like scenario B, Thank you very much! I actually remember it as clear as day--as all good mothers remember their kids first words… even though she was 7 or 8, not 2 or 3; but nevertheless, it was a lovely story, one of happiness and fun, and…

You see, one day we were enjoying a nice summer day outside playing on the swings and planting some garden. When it was time for lunch, we went back inside for a bowl of Mac and Cheese—freshly made with love from a box--and an all-time favorite, too! (Yup, lots of love here!!) As I was serving her her bowl of “delicious,” as I used to call it (along with a loving hand sweeping back her long blonde hair—and with a smile, of course…), her fork fumbled in her hand and she mistakenly dropped it on the floor. As she bent down to pick it up I heard her first words spoken so astoundingly clear—at least to a mother’s well trained ear, and I turned to her in wide-eyed acknowledgement of what I had just heard. Her first words spoken clearly, appropriately and without anger or frustration, were: “Oh shit!”

So, somewhere along the way she had learned that if a person dropped something on the floor, the accurate verbal response would be: Oh shit.

Lovely! And what? the mom of the year award should be delivered right here please!!

Maybe scenario B isn’t so far-fetched a scenario after all! And a one-way ticket to a foreign, remote land of the lost for me, please!!

Model Me Kids Training Videos: Building Self-Esteem & Bully Prevention

2009-05-29T08:27:00.005-04:00

I received this newsletter from Model Me Kids and thought I would share...

Coming July 2009: New Video Modeling DVD! Model Me Confidence™Building Self-Esteem & Bully Prevention Techniques

A social skills training DVD based on peer modeling for children and teenagers with Autism, Asperger Syndrome, PDD-NOS, and Nonverbal Learning Disorder.

See Previews Here

Topics Include:1. Self-Advocacy 2. Peer Pressure 3. Choosing Friends 4. Building Strengths 5. Visualization 6. Positive Self-Talk 7. Scripting 8. Stay With Others 9. Telling Isn't Tattling 10. Walk Tall11. Group DiscussionVisit Model Me Kids®

Bonus DVD! The DVD is supplemented by a special video geared towards parents, therapists, teachers, and schools with suggestions for supporting bullying prevention. It features Nick Dubin, an adult with Asperger Syndrome and Autism advocate, and School Psychologist Dr. Erica Edelman.

Btw: have you used these types of training videos? If so, please let us know what you think in the comments..

Stone Zoo Event Tomorrow Night....fun for kids

2009-05-28T07:41:00.001-04:00

Want to do something unsual this weekend?

Pajama Party at the Zoo!

What if you could come to Stone Zoo – in your pajamas!? This family-friendly program promises to be loads of fun! Registrants will receive special late entry to the Zoo, a night-time snack, special story-time, a craft project, and up-close encounters with our hyacinth macaw and prehensile-tailed skink!

This very special evening will be held May 29 from 7 to 8 p.m. at the Stone Zoo Animal Discovery Center. The cost is $8 per participant, $4 for each additional participant. Advance registration is required. For more information, please call 617-989-3742 or send an e-mail to education@zoonewengland.com. To learn more about Stone Zoo, visit www.stonezoo.org.

A track star, not a social butterfly

2009-05-27T10:01:00.005-04:00

I was pulling into the parking lot of the high school (which is next to the middle school and where the track is located) to pick up Nick promptly at 4:30 from track. The significant element to this story is promptly at the time that I was supposed to be there—and not one minute earlier. I have been in the habit of getting to the track at 4:00 to watch him run and compete with his classmates, but I had decided: not today.

It was a bit selfish on my part, but I needed a break from watching him not be like his other classmates. And I know that sounds harsh, but let me explain...

When I watch him it is so clear that he doesn’t socialize with the other kids, and he so easily seems to get lost in the pack. He sort of just hangs out and waits for a kid (selected by the coach) to help him out. A burden to the team? I really don’t know, and I don’t care, because he can be there if he wants to be, and the kids and coaches do support him and seem to like him very much, so if he’s happy, then I’m happy. So as long as he occasionally runs and does not get ignored—because he could so easily be ignored, and break my heart—then all is good…enough. Right?

So yesterday I’d decided that I would not watch him and just show up with the parade of other moms or dads driving in to pick up their own track-star teenager (hey, we can dream), while the kids were all waiting with their selected groups of friend, and Nick standing just slightly off to the side in his group of one, but looked just fine, happy enough, and waiting like everyone else: Like a typical 8th grader…and the reason why I came on time!

Ignorance is bliss is what I said to myself as we pulled out of the school and Nick was showing me his track wound (apparently, a little scrape from falling while jumping hurdles), which required a large bandage patch on his elbow. I played with fire and asked him if he had friends at track and he quite candidly said: No.

Ouch.

But it wasn’t a No in a sad or an embarrassed way, as I would have been if asked that question by my mother and said No… which I wouldn’t have said even if it were true; I would have told her that I did, and would have been upset that she even had to ask.

But I’m not autistic. And Nick is. And his autism doesn’t allow his lack of friends to bother him; actually, he seems to prefer it and I’m not sure if that’s a good or bad thing. He just doesn’t care about making friends and seems to run away from the prospects of a kid coming near to chat.

I think it is a combination of shyness and the lack of verbal ability. As a late talker and burdened with the inability to make conversation other than to simply answer one word questions (or nod his head)… he doesn’t like to be placed in a situation to chitchat, no matter where he is. (And yes, he’s had years of social skills classes, but it doesn’t seem to be catching on in the real world—at least not yet.)

When I think of this issue, I think of his very first school psychologist. It was in a different town than we currently live, and he was helping me with Nick in kindergarten to just starting the 1st grade. On the eve of our move and Nick’s last day at that school, we were chatting and I fought back tears while telling him that I was worried that he would never have friends and would be alone in life. And he told me, and I still remember the exact expression and smile on his face, “Oh, not a kid like Nick!” (Meaning that he would be surrounded by friends because he’s such a great boy.)

I wonder if that’s still true.

As it stands today, his friends consist of his 41 year old uncle (my brother, who has ADHD and likes the same shows as he does and can easily be just as silly), and the neighbors’ kids, who are 5 and 6, who he finds entertaining to watch and will approach them when they are at our house.

I do have a couple of friends who have kids with ADHD and autism, but even when we get them together, it’s like they’re playing apart. It doesn’t work. They don’t mesh. But it doesn’t seem to bother Nick; instead, it seems to amuse him that they don’t socialize with him—like Nick would prefer not to have to socialize with them—a kind of relief, perhaps, but he seems perfectly content to just watch the kids and be among his own group of one: memberships n/a.

The air of Gemini is among us...

2009-05-26T09:31:00.012-04:00

Ugh! I feel guilty this morning because I sent Meghan off to school with black feet and dirty hair.

Ugh!!

In my defense (ahh, we all have one of these, now don’t we??), I had to work unexpectedly and wasn't home to give her a shower before she went back to school yesterday afternoon. When I saw her last (and left her) she was playing outside on the swings and, yes, sporting bare feet with sandy-dirt underfoot, dirty-ishhh hair and ohhhh, there was no time to get her into a shower, nor would she budge if I had the time. And since her father could not help her in this department, then …

I sat at work fully aware that I had sent her to school looking like a wild, homeless child...

Good grief! Minus 1000000 points for me!

You might be wondering why my 14 year old girl couldn’t just jump into a shower and scrub, scrub, scrub on her very own??

Haaaaaahaaaaaaahaaaaaa!!!!!!!!!!!!!!!!!!!!

Allow me to explain. Unless I am there to physically enforce and force her to get into the shower (could take anywhere from 15 minutes to 2 hours….really), while hovering near and about to make sure that there’s actually some scrubbing going on behind closed curtain … like washing her hair with actual shampoo and not just wetting it down and dumping all that (cheap) yummy fruity goo down the drain, while laughing hysterically… , then she will not do it!

yup, my little angel!!!

I just don’t understand it, though. I had once deemed her my little water girl, she loved…loved…LOVED (stolen from Pride and Prejudice) the water, and showering was her favorite pastime of all. I will show you the watermarks on the family room ceiling below the bathroom if you don’t believe me. In fact, she loved showering so much that we installed an outdoor shower (brilliant idea, btw) and we even contemplated putting in a drain in the middle of her bathroom floor—radical idea and it would have worked, but I thought that Meghan needed to learn to keep water inside the tub… there may not be drains in the middle of bathroom floors in her future.

That’s how much she loved water... and no, it wasn’t because she had dreams of becoming a mermaid or that Aquarius is her astrological sign... she’s actually a Gemini. You know, the yin and yang twins... “The air of Gemini is always changing direction.”... and so true it is...

Once upon a time she loved water because it offered her the sensory stimulation (deep pressure) that she was seeking. I knew this because always after a shower or a dip in our local pond, she would be calmer and happier, as if somebody stripped away an undesirable element from her body.

But as of the last couple of years, she has lost that loving feeling with water and I'm not sure why, other than the yin and yang theory...

It’s either hot or cold with her…in excess or nothing…black or white…good or bad…

There’s no just-a-little-lukewarm-grey-is-okay in her book!!

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A time once remembered under lock and key

2009-05-24T13:52:00.008-04:00

One day my neighbor came over for a glass of wine, and cried when she saw the inside of my house. Literally. She was a “newer” neighbor and new to the neighborhood (we, ourselves, were new to the area by a little more than a year) and it was one of the first times that I had her over for a glass of wine. She was crying because she finally realized how much harder I had it with my two kids than she did with her one toddler. No comparison! And a no-brainer! But this was the first time she effectively got to see the inside of my house—and noted the alarms on the doors and chains on the two sliding glass doors—as if we had to “lockdown” the house and “wire up” the alarms before we could even go to sleep at night. And she was right.

What was even more interesting was that I had already told her, via a long phone conversation, about Meghan and autism and what our days were kind of like. But seeing is believing, I guess.

She was crying because it had finally sunk in, and it all seemed so alarming to her to “see” that we had to use chains with locks attached to our doors and steel locks on our fenced-in yard gates, that could only be unfastened by a key. She told me something that I had remembered, and would never forget: “Look at how you have to live! You know, no one appreciates what you have to do for your kids and I’m in awe to you, really! I think that you are an exceptional mother and I feel for you, I really do!” And she was fighting back tears while saying this to me.

This form of affection and attention certainly caught me off guard. I was not used to anyone understanding what our life was like living with two autistic kids—let alone, telling me. (And actually, Meghan was the only reason why we had to use chains and alarms on all of our doors and gates because she was prone to bolting away (and bolt being the best word to describe how quick she could escape) and we had nine ponds in our development to worry about, as well.)

It was one of those moments—like an ah-ha moment—where I, too, noticed how we actually lived from an outsider’s point of view. Like, Oh yeah, I do have chains on my doors…isn’t that’s normal? I immediately felt like I wanted to rip off the chains because they suddenly looked so offensive to me, like we were freaks or something. And no wonder why the other neighbors stayed away. Ahhhh-haaaa!!

I’m sure it took a lot for her to say that to me—hence the tears. And she also told me that she would help me whenever I needed it—like a good friend and a neighbor would do for another...

Let me just say that I was not used to hearing that from anyone. And I, too, had to hold back the tears. And previous to that day, my only friends were those who had special needs children of their own, and who not only knew how I lived, but were also the only ones who could relate to my day-to-day life—and who I also equally respect and admire! ;)

I was reminded of this story because Meghan is home for the long weekend (happy Memorial Day!), and on her first night home, we had a cookout (celebrating her birthday) and an outdoor fire, which she enjoyed. But getting her to stay inside during these last two nights was like wishing we still had those chains and locks on the doors.

Progress, or regression?

Though I trusted she would not venture far from the balcony or deck, it still worried me that she was so easily going outside of her own free will. We finally had to say “enough” after 11:00 pm, and send her off to her room—because vigilance is exhausting!! And yes, it was also long past her bedtime (all of our bedtimes, actually), but she still had some pent-up energy to burn, so we allowed her the extra time.

I know that Meghan has come a long way from that fleeing 2,3,4,...7,8,9…12 year old little girl that she once was; and now that she’s 14, she has matured (progressed) in many ways:

She will sit and attend to activities longer than she had before (yes, we’re proud);

she will no longer try to bolt away as she has done twice before (oh, especially proud), and I don’t really have to hold her hand like superglue every time we go out somewhere—but I kind of do anyway, because she has gotten used to this behavior, and now clutches her arm in mine without my asking.

She still does, however, have those “excitable” moments where she will be a bit more hyperactive and move about the house in a rougher way; hence, a once mentioned broken bed…or two.

But, still, a huge improvement from the “lockdown” way of life that we once had lived…. And that I must try to remember this every time she’s home, because you can so easily forget these once remembered moments in time.

Coming home for Surprises….

2009-05-19T18:00:00.009-04:00

Meghan will be coming home this weekend for her usual biweekly home visit. This visit will be so much more meaningful for all of us because it’s her birthday weekend: Number 14. Do you remember being 14? I do, I was a freshman in high school and small and scrawny. Meghan is not small or scrawny; in fact, she got her…(um, men don’t wince…) menstrual cycle at 10, so she has been a woman for four whole years now. Incredible! I remember the exact moment that her teacher called to tell me that she had gotten her period; I was driving in my car and almost drove off the road, quite honestly! I was stunned. I wasn’t even a woman at 14, let alone 10. It is said that girls are getting their (okay men, once again) “cycle” earlier than ever before. Some suggest that it is due to diet (overeating) and hormones in food.

Interesting research, here, not sure if it's true or not?

What will also (hopefully) be another treat for her is that we have repainted her room and I bought her a new, fun quilt for the spring and summer (white with pink, green, and blue polka dots—very clean, refreshing, and cute!!). Her room is a huge improvement from what it was before: bright yellow and pink.

Now I have been told that these are the worst colors that one can choose for kids, especially kids with sensory issues since these colors overstimulate the senses and can cause feelings of anger. Pink also increases blood pressure, respiration, heartbeat, and pulse rate. Great!! I’ve been unwittingly working to overstimulate my hyperactive girl for all these years…

So we will soon get to see how she will react to Christopher Robin’s Swing green, since that is the new color of her room. Warm, serene and relaxing. Right there alongside her overstimulating television set!

Nice!

And this is the perfect prelude to the sweet story about her bed. Actually, it’s 1/2 sweet and 1/2 disturbing…

My sister and I grew up sharing the same bedroom (ahh, so sweet? Up until I was about 17 and wanted to kill her, but that’s another story…and now I can blame the pink walls!!) and we had a matching (white) bedroom set to share. And over the years, I've inherited the two twin beds, something that I thought Meghan would want. Anyhow, since her room was too small for two single beds (bad house design), I gave away the second bed (to another little girl who needed it and appreciates it, dearly…. at least that is what I am told!), and I gave Meghan my bed (or my sister’s bed, or my bed, or....oh, who can tell, they’re identical!). So that is the sweet and endearing part of the story; that a second generation is enjoying a nostalgic-inducing twin bed. Mother and daughter sharing one childhood bed…Ohhh!!

And No, that doesn’t make it an antique!!

Now wipe away those tears, because the happy story now takes a disturbing turn—well, sort of. You see, as I’ve told you before, Meghan is a little rough and heavy on people, places and things... including the aforementioned not-an-antique bed, and has not only bent the metal bed frame (quite surprisingly—I thought only Superman or Hulk could do that!!), but has also done a number on the box-spring, too. I would show you a picture, but I’m afraid you might freak… so just take my word for it that we had to gut the entire insides of the box-spring (box-spring without springs… why is that, anyway?) and fix it to make it stable, or simply go without it altogether.

Now you might be thinking, Hey, why not just buy her a new box- spring, crazy people!!? Well, it’s simple, because she will break that one too. And then the next one, and the next…, most likely. So we are going on the concept that we will be repairing it with heavy-duty wood pieces and a good prayer that she will be more gentle with her new and improved not-an-antique bed, since she will no longer be overstimulated by the bright-as-a-stop-sign yellow and angry pink!!

One can only hope.

And, of course, she will also be getting yummy, over-stimulating chocolate cake…

And she can eat it too!!

More, here, about how to handle girls and puberty, autistic and typical girls alike.

Travel to Boston on a Private Jet

2009-05-18T07:05:00.008-04:00

Ohhh, as someone with a heavy entrepreneurial spirit (in fact, my juices are flowing right now for a new business .... stay tuned for more on that at some point later in the year), I just love hearing about new entrepreneurs and their new enterprises, like this one.

One of my closest friends, Judy, sent me this link to share with you and others who may be interested. It's a new business called Autism Escapes, and it is the brainchild of a New Jersey couple who have a 10 year old autistic son. Here's the deal: As we all know, it is sometimes very difficult to travel with our autistic kids--I know this from firsthand experience--and so do the people at Autism Escapes. They get corporate jet owners and pilots to donate services so families can get a free private flight into Hanscom Air Force base in Lexington, and transportation to Mass General's renowned LADDERS program for autistic kids. Parents get to utilize the autism programs, doctors and therapists in Boston without the worries of getting here.

Read more here...

A loving moment, not for the weak at stomach

2009-05-15T12:25:00.007-04:00

Meghan was home this past weekend, and at one time, she came over to me, while I was sitting and relaxing on a chair, and started stroking my hair.

Ohhh, so sweet. She was actually stoking my head ever so softly and sweetly. It was the most loving and impressive moment that I’ve ever had with (by) Meghan. In fact, her mannerisms are usually those of rough, heavy, severe, that one would usually liken her to a bull in a china shop, because soft and easy isn’t her thing..

But here she was stoking my head with a nice, soft, and easy hand that I said: "ahhh, Meghan, that’s so nice; so sweet! I love you, too! "

As she continued, I reclined and enjoyed the loving moment that I knew would only last for a few more seconds … until my eyes popped open and I said to myself….

Is that the smell of poop on her hands?

Ohhh. Myyyyyy. GOD!!

I mean, it is an undeniable stench!

And what does a mom say/do at a moment like that; a moment that has never before been experienced by her autistic girl. And here, here it was, the sweetest moment of Meghan’s life--finally exhibiting love and care for another human being, and …

the heavy odor of poop still lingered from her hands…

Maybe she was wiping her hands on my head?

So I quickly--but nonchalantly--inspected her hands, and to my relief, no signs of … well, you know.

So I continued to let her caress my head without making a face that said: ugh, gross, yuck, I wanna throw up…

And noted that as soon as the loving moment has past, she would--once again--scrub her hands with soap and water-- ironically, a favorite pastime of hers--soap, water, ahhh, the fresh, clean smell of lavender..

And I would need a shower…

Ohhh, the things we do for love!!!!

And btw, this moment will be remembered minus the poop smell!! ;)

Consequences

2009-05-13T14:06:00.007-04:00

Merriam-Webster defines consequence as:

1. A conclusion derived through logic: inference
2. Something produced by a cause or necessarily following from a set of conditions
3. Importance with respect to power to produce an effect

As like a lot of autistic kids, Meghan has a very hard time understanding the consequence of her actions. Sending her to her room wasn’t enough of a consequence (or punishment) for her to stop the undesirable activity or behavior; and as a consequence, I had no way of properly mothering her and keeping her safe, other than constantly racing after her and hovering over her.

Many years ago, one of her teachers (the one I really hated) told me, and the rest of the team, that Meghan could successfully be disciplined by keeping her locked in her room and installing a peephole in her door. Yeah, right. Instead of “services,” I should get a lock and a peephole; instead of a bus monitor, I should get her a leotard (a long, frustrating story). Let me just add, holding her in her room has never worked. She doesn’t mind being in her room, and the one time that she did mind, she threw a toy at the window and broke the window. I got to her just in time before she could play with the shards of glass—which she found most intriguing!!

The bottom line: Meghan didn’t care about being sent to her room or not getting dessert (which she would just find unfair) or not going to the playground; she didn’t understand how not getting these things were in relation to what she did wrong, even if the consequence followed the negative behavior.

I’ve even tried rewarding her for her positive behavior. For instance, she would never sit in her seat belt in the car, so in order for me to drive anywhere, I would give her a piece of her favorite candy (like an M&M) every few minutes for rewarding her for sitting in her seat belt. Unfortunately, doing this just proved to be a desperate attempt to keep her busy while she sat in her seat belt. Either she didn’t understand that she was being rewarded for the “appropriate behavior” or she simply didn’t care, because, when she got full or bored, she would be out of her seat belt like a hyperactive child on a sugar high (hmmm)--and I would be screwed!

One Christmas when Meghan was around 5, my sister bought her a preschool toy that taught cause and effect. The toy was big, bulky, and required the youngster to push a small plastic ball through the top to watch it come out through a door at the bottom: a consequence to the action, place the ball in the top, get it back at the bottom. I thought it was insulting.

Today, I want it back, because Meghan still doesn’t get the consequence of her actions theory. And no matter how much I try and trust that she does, it is always thrown back in my face.

Take, for instance, her ipod. She first borrowed Nick’s even though he told me he didn’t want her to use it because she would bite its shiny glass surface. I told him that I would supervise, and did, until I trusted her with it, and then she broke it.

So we go out and buy them new ipods (a consequence to my misguided actions and a second chance for Meghan) and all is forgiven and good again, until she decides to chew on the plastic earphone cord, and now the earphones no longer work.

And no more ipod for her until she learns that biting the cord will get her “no ipod.”
And how do we exercise that experiment? By eventually giving her new earphones and trying again.

And again…
And again…

Do you see the vicious cycle here? This is not parenting 101 (like it was/is with Nick); this is super parenting for the parents who are destined to go insane!!

And I know in some way she can’t help it; she has sensory integration issues and when she is in the presence of a soft, pliable piece of plastic, she can’t help but chew, chew, chew to her hearts content. And, yes, I have tons of chewing tubes for her to use for this very need, but, apparently, these, too, get boring.

As for the ipod, Meghan is still none the wiser, for she cannot understand the concept: that due to her actions, she can no longer listen to her ipod; just as much a mechanical consequence as it is a behavioral one.

So she bites her hand and kicks me. And still no ipod. And I walk away.

Hmm, there’s always next time, I guess.

Happy Mother’s Day!

2009-05-10T08:49:00.006-04:00

I’ve been hearing those three words for 15 years now...

and it doesn’t get old.

But they are!!!

Have a Great Day all of you Fearless Moms!!

Track

2009-05-09T09:08:00.007-04:00

I watched Nick at track practice the other day. I had to go early to pick him up for a doctor’s appointment (a psychiatrist appointment for more meds… sigh. A boy of 15 (12 when he started) has a shrink…sigh, sigh, sigh.). So, I got a chance to watch him at track. Now let me tell you that I have done this before, and will continue to watch him at track because I’m so proud of him for even participating in an extracurricular sports program while he is suffering from acute anxiety at school—hence, the need for meds—and for a second year of track, too.

Yay for Nick!!

So, what’s it like to watch him with the other kids—typical kids? Well, my feelings are a bit twofold, as one can only imagine… On one fold, I love watching him, and sometimes I get to see how he fits right in with the other kids... I mean, running is a solitary sport, right? Up until it’s not. Right? Now you must be thinking: what the heck is she talking about; what’s she sniffin’ over there in Plymouth??

Nick is not really a smiling kind of kid. He’s happy, but he doesn’t always show it on his face. So when he’s at track, one can’t tell what he’s thinking… I know he likes track, otherwise he wouldn’t want to go, and I certainly wouldn’t make him. So I have to believe that he is happy in track and enjoys himself—as he has told me that he does, the many times that I’ve asked. The other side of this fold, is that when I do watch him at track, I feel like I’m chewing on my heart, for reason I’m going to tell you now.

On this particular day, it was raining outside and practice was held in the gym, running and playing racing games, etc….

And I had to witness him play a group racing game (team game), and did.

How’d it go? Well I got that ache in the pit of my stomach that said: shit, fuck and damn, why do I have to be here. Why couldn’t I just fantasize that he is doing great in a group activity and smile obliviously and be happy.

Huh? Why? Why did I have to witness this…?

Kids were broken up in two teams: one team on one side of the gym, and the other on the opposite. They were competing with each other for the team that could run the fastest, while touching various lines. The team opposite Nick’s ran first: the clock stopped at 20 seconds…

When his team was next, I held my breath and watched: the time stopped at 25 seconds. And any clueless spectator would have been able to deduct that it would have been a much better time if Nick hadn’t slowed them down.

Shit, crap, damn…was that a moan I heard from a few of his teammates?? And were they all watching me because they knew who I was?

Now I am not picking on my son; I love him dearly—obviously—but he didn’t even seem to try. The buzzer sounded and the kids ran, and Nick was about 10 seconds behind them and he wasn’t working hard to catch up… even slowing at some points.

The heaviness I felt was not that he was slower than the other kids… even on the field, he is slow at the races, as if he thinks that racing is about going as fast as he wants to: like there’s no team spirit, no rules. I don’t care if he comes in last, but I do care if the other kids are wishing and hoping that he isn’t on their team.

Remember picking teams in high school? Someone was always picked last, and that meant that they didn’t want that person on their team.

And I can’t help to think that that’s my son, too.

It’s like chewing on your heart to watch…it really is.

The Stone Zoo's got some green and wild things cooking!!

2009-05-08T15:56:00.005-04:00

Recycle computers and electronics at Stone Zoo!
Free recycling day on Sunday, May 17

In honor of Endangered Species Day, Stone Zoo is inviting people to help the environment by responsibly recycling their old electronic and computer equipment. Items may be dropped off in the Stone Zoo parking lot from 10:30 a.m. – 5 p.m. on Sunday, May 17. CRT Recycling, which has a zero landfill policy, will recycle the items. CRT Recycling ensures that computer hard drives, which may contain personal info, are shredded if they are removed from the machine. For more information on CRT Recycling, visit www.crtr.org.

The company recycles the following items for FREE from schools and non-profit organizations: computer monitors, laptops, CPUs, servers, CD Rom/DVD drives, speakers, mice, keyboards, plugs, wires and parts/accessories of computers, copy/fax/scanner/printers, phones of any kind and phone systems, UPS (computer battery back -up systems), camera/video/audio equipment, DVD players, stereos, VCRs, Walkmans, iPods and accessories, microwaves, air conditioners, refrigerators, freezers, dehumidifiers, hot water tanks and heaters, washing machines, dryers, stoves and dishwashers. Please note that televisions will not be accepted.

For more information, please visit www.stonezoo.org. Stone Zoo is located at 149 Pond Street, Stoneham.

Celebrate Endangered Species Day!May 16 and 17 at Stone Zoo

Did you know that Endangered Species Day is May 15? Did you know that Stone Zoo is home to several endangered species including jaguars, hyacinth macaws and snow leopards? On Saturday, May 16 and Sunday, May 17 visit the Animal Discovery Center at Stone Zoo to learn about endangered species, including our very own special residents – the Panamanian golden frogs!

Pick up an Endangered Species scavenger hunt, and participate in activities and animal encounters to learn what you can do to help endangered species and raise awareness.

Meet our Zoo staff and learn about animals and conservation!
2:00 p.m.—Jaguar, at exhibit in Treasures of the Sierra Madre

About Endangered Species Day: Endangered Species Day is a celebration of our nation’s wildlife and wild places. Started in 2006 by the United States Congress, Endangered Species Day is the third Friday of May.

ALSO: A Wild Affair!

Everyone’s Wild for Stone Zoo’s 2009
Fifth Annual Tasting Event to Benefit Zoo’s Education and Conservation Programs
WHAT: A Wild Affair is a “tasting” event that will feature stations hosted by local restaurants and caterers - as well as live entertainment, a silent auction and an opportunity to stroll among the animals. Last year’s sold-out event attracted more than 600 guests and this year promises to be even better with the opening of Stone Zoo’s new gibbon exhibit. Endangered animals native to Southeast Asia, gibbons are arboreal (tree dwellers) and the exhibit will be 20 feet tall to allow them to climb and swing from trees, mimicking their natural environment. Proceeds from A Wild Affair support the operation and continued growth of Stone Zoo, including its education programs and conservation initiatives.
WHEN: Saturday, June 20, 2009
TIME: 5:30 p.m. - 9:30 p.m.
WHERE: Stone Zoo, 149 Pond Street, Stoneham, MA 02180
TICKETS: Tickets are $40.00 in advance and $50.00 at the gate. To order tickets call 617-989-3760 or or visit www.stonezoo.org. FOR ADDITIONAL INFORMATION: 781-438-5100 or visit www.stonezoo.org

Two kids, two lives

2009-05-06T14:45:00.006-04:00

It may appear that I have only one child; at least it feels that way. I catch myself thinking that sometimes while I’m doing basic things: taking a shower, cleaning the house, picking up groceries. I think to myself: is this just a phase in life that everyone goes through, that it happened to me earlier than expected? It’s not like a death where she is gone from me for good, but it’s more like a moving on to a different life earlier than expected… a childhood cut short, an innocence fading--in a way, at least from my perspective. It’s boarding school, really, kids go to boarding schools or else they wouldn’t exist (...ah, boarding schools, that is, not kids). She is there at school enjoying her life of school programs, activities, girlfriends, and even dances--for which I have to buy her a new dress, but will not be there to see her in it, but she is happy from what I hear, very happy.

But it does seem like there is only one now, a boy, to take care of, to love, to dote on and offer him pie. Blueberry pie, this time, and it was good from the look in his eye and the smile on his face…good pie after his hard day at school, how simple is that: a boy’s life, his innocence, a childhood still intact.

Teens, Sex and Television (Ugh!)

2009-05-01T08:30:00.005-04:00

My son seems to be making transformations of his own lately…. That is, he is only watching television shows that display, talk about, and refer to the act of sex. And he’s learning about this stuff from, um, television’s very high quality programming (extreme sarcasm here): Two and a Half Men, for example, yeah, nothing like learning about womanizing and inappropriate sexual comments, and, unfortunately, it’s his personal fave… I always hear him cracking up a laugh or two over its stupid and perverted jokes…. Jokes that he doesn’t get…at least I think he doesn’t. but I think he likes the kissing scenes and the half naked women leaning over the bed, kinda thing. Ohhh, geez!!!!!!

And there’s another show called Family Guy. I’ve never actually watched this one but after overhearing it on the TV, I quickly realized it has sexual references. So I ran down to the family room to hover (not to criticize, just observe nonchalantly) and Nick quickly changed it to CNN. Yeah, right! That’s the equivalent of the time that I had just gotten my drivers license (at 17) and told my mother that I was meeting a friend at the "library." Yeah, right! Let me also back that statement with the well know fact that I’ve only actually been to our public library maybe twice in my youth…

So no, Nick, I don’t believe you were watching CNN.

I do believe, however, that you were watching something with sex themes (please tell me that they are not graphic.), but here I must stop myself because I realize that you are 15 now—as hard as that is for me to believe, but when did sex become an interest??? Dirty jokes, Madd magazine, do you even get the comedy? But that’s not up for me to argue or deny, because you are a growing boy just trying to feel your way to adulthood… I get it. I was your age, too. However, my dad bought me, um, higher quality magazines, like Redbook and Young Miss, the real and healthy way to get all the answers—and I did, quite surprisingly—and genius on his part. I also relished some of the young teen fiction books located at my school’s library (when one is forced to go to the library, then one is in search of sexually interesting books…). Yes, in fact, that is where I learned that "sex is like an itch that you need to scratch." (Hmm, not sure if that’s any better?) Anyway, it’s my turn to teach and I am failing miserably. So if anyone knows todays equivalent of Young Miss magazine, but for young men, then please let me know what you would recommend---and if superheroes are the theme, then it’s a done deal!! And I am not talking about what’s happening to my body books, he’s got those, I just need to feed his peaked interest of the nature and, perhaps, the mechanics of sex in a more positive way—if possible.

OMG I can’t believe I had to blog about this….

Genetic link to possible future treatment for autism.

2009-04-29T08:27:00.005-04:00

New findings in the cause of autism leads to hopeful treatment in 5 – 10 years. Here from Abc News.com:

For the first time, scientists have identified specific genetic mutations
that lead to specific abnormalities in how brain cells communicate and carry
messages in the brains of those with autism.

By comparing the DNA of those with and without autism, researchers were
able to identify several genes related to autism. Scientists say that autism, a
complex disorder, could be caused by as many as 50 genes.

The findings point researchers in the right direction toward developing
drugs to treat the disorder.

"What we're discovering in this study is that these genes appear to be
affecting similar biochemical pathways in the brain, and so then, if we can
develop drugs that can help to repair or restore that pathway, this eventually
could be extremely helpful as a treatment."

Read the whole story AbcNews.com

My feelings are that it's great to know that we are realizing a better understanding of autism and its possible causes... and if there is an actual treatment for it, then what a bonus...

Feel free to offer your opinions in the comments..

Playdates

2009-04-28T10:07:00.009-04:00

An interesting thing happened a couple of weeks ago. We were walking into a—not so—local restaurant for Easter dinner with my family and spotted a family that we knew. Actually, they’re one of our neighbors who live up the street from us, and their kids used to play with my kids—especially with Nick, and expecially this one girl he liked. It was actually a nice period of time, a few years back, that kids would come into our yard and play with my kids… Ahhh, doesn’t that sound so nice!? And how did I pull that one off? I mean, how did I get a bunch of neighborhood kids interested in playing with my special needs kids who could not leave their yard. I vamped up my backyard with every toy imaginable—that’s how. I added a huge swing set w/ a fort, a fun trampoline, a basketball hoop, badminton, horseshoes, baseball game… get the picture? I bribed them to play with my kids without the actual contract. Until the day came that they all got bored. Sad! But the good part of this story was that when all the kids had dissipated and went off to the next fun yard, there was one boy who lingered. He was our immediate neighbor who happened to be the exact same age as Nick, and he would come over to play with him almost everyday, and sincerely, too! They would play on the trampoline together, then go to the family room and play a Play Station game… it was so nice for Nick, and I think this boy enjoyed himself, as well.

Then one morning while I was making coffee and looking out the window, my eyes did a doubled take in the direction of this boy’s front yard—I squatted, squinted, and with my mouth hung open wide, I saw the sign: For Sale.

Fuc* was my immediate reply.

But back at the restaurant, we said our very pleasant hellos to our neighbors and their extended family and moved on to our table led by the hostess. At the very next table from ours was a girl who I immediately recognized as a friend of Nick’s from school; a girl he knew from his special needs classroom. I said Hello to the girl and then quickly scanned the table to where her mother was sitting… I said a very nice hello, as did she, and as she was telling her husband who I was… I saw a look in her eyes that clearly said: You snob!

Meanwhile, Nick sat at his seat that was somewhat facing the girl’s chair. After seeing the girl, he immediately placed his hood from his hoodie on his head and I had to say, “Uh Nick, no hood, buddy.” I knew what he was doing; he was trying to hide.

I called it being civilized. I did not care about the people who were sitting next to us (either one of the tables) or their feelings about me, etc…We were having a nice dinner with our family--as were they--and that was all.

I bet you want to know what happened, dontcha!!?

Before I tell you the interesting details, I will tell you that it was an interesting dichotomy to be sitting between these two groups of families—that was for sure!!

At the beginning of the year, or shortly after, Nick was invited to this girl’s house for a playdate. After asking him if he wanted to go over her house and he replied yes, I called to make the playdate appointment. (Strange to say appointment isn’t it? Growing up as a kid in my small development, one merely ran around the neighborhood and pounded on any door that looked fun to play at…). On that day, I drove Nick to his playdate since he could not go over by himself because it was about 4 miles away, and even it wasn’t that far, I still couldn’t have him go to a compete strangers house by himself. (Again, unlike when I grew up. I remember banging on the door of the “new people's house” in the neighborhood and asking if she (the woman) had children—and when she said No, she asked me if I wanted to come in for some tea and cookies. I, of course, said yes—I mean, really now!! But how bored must this woman have been… entertaining a young, dirty 7-year-old girl who had just climbed a tree (probably) and sporting bare feet (most likely) with tea poured from a china teapot and offering tea cookies on a silver tray!! Uh, well I exaggerated the silver tray part, but you get my point!)

Now I’m not that experienced with playdates… it’s been a while. But I wasn’t just going to drop him off and leave… From the way the girl’s mother welcomed Nick into the house, it seemed like that was her plan. No, I hung out and was deathly bored. But that was okay, I mean… I wanted Nick to have fun on his playdate—or date. Do 14-year-olds have playdates?? This girl has special needs too. Down Syndrome, actually, and she was very sweet and nice to Nick, and who also seemed to have a crush on him. I think Nick was curious about where she lived and, well, being asked over to her house was new for him; it doesn’t come along very often. Um, almost never, actually!

To make a long story short, the following week I offered to have the girl come to our house… and we had pizza, soda drinks, and some wine for the mom. Then the following week, the mom emailed me to have Nick come over again. Nick agreed and I sat there talking with the mom for an hour and Nick was doing nothing more than watching TV with the girl. Bottom line, they had nothing in common, and by the next invitation, Nick asked me if he “had” to go over and I said “absolutely not.” So he declined. Actually, I had to do the dirty work and tell them that he was busy, etc. And after three, or so, emails later, she finally got the hint that Nick didn’t want to come over… at least that’s what I would have thought. I mean, what is one to do??

Unfortunately, the girl started being a little mean to Nick at school—she was in the next classroom over from Nick’s class and would see him intermittently throughout the day. I knew it was her way of being mad at Nick for not coming over anymore.

And this mom’s face at the restaurant had said it all.

I mean, what is one to do?

All’s fair in love and war; all’s fair in special needs and typical kids alike, whether we like it or not.

Why Meghan Goes to a Residential School

2009-04-24T09:05:00.014-04:00

It’s been a tough week to get through. And I’m almost there. No, I’m not trying to bitch about Meghan being home and how it has been a lot of work keeping her entertained and out of trouble…. Can I just say, though, thank God for television and a handy ipod…at least for Meghan, and at this moment; because without them, I would not get much of a break.

As you may have guessed, Meghan is home from her residential school for the week, enjoying a vacation—an at home vacation. It’s nice to have her home on one hand, but tough on the other. She has been up to her old tricks of trying to eat too much, washing her hands too much, dumping out soaps, shampoos and even toothpaste—I still don’t know why the toothpaste? She also loves food and would eat quite a bit at one sitting if she could--and does--when I’m not looking…(Um, that would be an entire bag of frozen French fries, a whole bag of bagels, an entire box of pastries…I think you get my drift! I still can’t get over how much she eats.) I actually have to stand guard, when I can, to “try” to contain the overeating.

It’s still a full-time job taking care of Meghan, but what’s different from how it used to be, just one year ago…? I am no longer scared to intervene and enforce a No when necessary--even though she may not listen. I have lived many years of trying to mother and discipline a reluctant autistic child. Spending most of my time with her and keeping her safe and on track. What track? Any track. But, as some of you know, when she turned 12 (her teenage years), she'd found a whole new way of manipulating me in trying to get her way—she attacked me. I would be left black and blue with bite marks all over …and let’s not even mention my bruised and broken ego.

I think there’s a big difference between being attacked by your child than being attacked by your husband. The being attacked part would be the same, I imagine: the hair pulling; being pinched in the most sensitive of places—the cheeks, the breasts, the neck—anyplace that would hurt you. But, I think when it’s one of your own children hurting you like this, it’s a lot different, at least from the mother’s perspective. In both circumstances the abuser would show the rage in their eyes—they change, and the whole look of the person’s face becomes someone else—a different person in the moment. At that point, the anger is so beyond control that the abuse will happen no matter what you (the victim) say or do. If my husband hurt me like this, I would call the police, have him arrested, and I would want him dead. When my daughter came after me (sometimes once a day) I would almost surrender to her and allow her to pull my hair and pinch my cheek; but, at the same time, I’d be fending her off as best I could without truly hurting her…. I mean, how can you hurt your child who doesn’t fully understand the world around her, and cannot speak—communicate—to articulate her own complex feelings… I mean, how else could she let it out? And whom else could she let it out on?

I, of course, didn’t like her attacks. And after those few seconds, while both of us were resting from the adrenaline rushing through our bodies: hers through rage, mine through self protection, the bites and the pinches were not as painful as the pain of what was left of me after those moments… when I would get away, run outside and cry.

Meghan, on the other hand, would run to her room, or my room, sit, watch TV and laugh. I didn’t think it was a sinister laugh, but I did think she felt better… I mean, she let it out, right?

My husband once asked me, after an attack, why it was that I was crying…

I couldn’t believe he had to ask.

I am not scared now… I know Meghan has learned that attacking people is not acceptable… She’s learned this at school—her residential school, where there are trained and knowledgeable teachers who understand the different facets of autism and its associated behaviors—and where there are always two or three women (teachers) on hand to stop her before she can start…They are not scared, because they know the routine. When Meghan comes after one of them, usually the one who told her NO, two or three teachers will be there to grab her arms and direct her to a chair until she calms down…and at the same time, redirecting her to another activity. And, consequently, they would not be sad, or scared, or be crying. They would not even be mad at Meghan, because they know best how to help her understand, behave, and, eventually, live to become a productive member of society (or at least learn to live to her fullest potential). And as for Meghan? Well, she has since learned that this form of “trying to get her way” is no longer acceptable. She still bites her hand and pinches or bites her teachers when she’s frustrated, but most of the time she will walk off to her room, or to a chair, to vent and regain control.

I sit here now with confidence that when Meghan is home, I will do my best to keep her from eating too much, dumping out soap, biting foreign objects, etc.. and keep her engaged in activities to move her along with her day. I will teach, or coach, her what I can while she’s here—because I now know I can without fear. I will also enjoy snuggling with her, watching TV with her, playing her silly little clapping game (one that she has learned at school) and know that the time with us will be invaluable and well worth the petty struggles (the small stuff), because she will go back to school next week and learn even more…and make progress.

Sometimes I wonder what would have happened if I hadn’t allowed her to go to residential school; if I just chickened out and thought, well, I will just manage and do what I can; and if I get attacked, well, it would be better than having her live outside our home…right?

I know our life would have been different—very different. Meghan would be at a collaborative school—one that would actually tolerate her attacks; but at the same time, not like her because of them, perhaps even be afraid of her. I mean, why not? The other schools were, so why would this one be any different? She would also be twice as tall, and three times as big (at that point), and her tirades? Well they would be commonplace. And Nick would be afraid now, too; he would run away from her and, in turn, not respect me anymore… He would want to escape to a place far away from his mother—who he had once felt close to and, ironically, safe with, but who has now abandoned him because of her broken spirit and lost sense of self.

And in the years that would follow, people—neighbors, would drive by my house, and at sometime, somewhere within the depths of their car someone would eventually ask: Hey, what ever happened to that woman who lives there? You know, the one with the happy disposition and easy smile. I remember when she used to have wonderful birthday parties for her kids and would invite the whole neighborhood to come… And someone else, the one who would know, would say in response, Oh, yeah, well she still lives there. You see, somewhere deep within her house, sheltered behind closed doors, she lives there with her adult autistic daughter who scares people…and, unfortunately, all attempts to get her into an acceptable program have failed. Yeah, it’s sad. Some people even say that the woman’s arms are always covered with bruises; her smile, gone; her spirit, lost.

Yeah, it’s sad there now, very sad.

Almost a year after entering residential school…

2009-04-20T11:39:00.006-04:00

This week I thought I would stretch back to my archives and pull some oldies from when I first started blogging 10 months ago. As you know I started this blog to help me deal with the reality of sending Meghan to a residential school. And over these few months, many people have found me (this blog) for that very same reason: they are facing the same reality of having to send one of their own children to a residential school.

It’s interesting because back then I definitely thought that some visitors to this blog would condemn me. I thought they would tell me that I was “giving up” or “how could I send my child off to residential school,” or an “institution” for those who didn’t understand. I thought this because I, too, thought it of others who preceded me and had done it to their own children when my daughter was still very young.

Back then I had no idea what laid ahead for me, for my family, and for Meghan--and it scared me to death. The “not knowing” about our children is the horror in anyone’s story--as in any difficult situation or traumatic event. I can honestly say that I thought of myself as a fighter for my daughter (for my children) and was determined to make her a success story. But by sending her off to a residential school was surely the start of just giving up and surrendering.

This was the main reason for writing this blog: A form of therapy, reaching out to others, helping others, seeing my words reflected back at me to completely comprehend what was going on…all of it. And I found myself pulling away from Meghan—physically and emotionally, as if to protect her and to protect me. I would find myself searching for an escape—reading books, spending time with friends… anything to detach myself from my failure. Failure. It’s interesting to see this word and think of it as a common word used when one is failing at school, or a job, or a project…but not parenting. Failing your child is inexcusable. And no matter what anyone said to me in support of this decision, I believed it was a failure on my part and an end to her success story.

And now, after almost a year, I realized something that I wasn’t sure I would. I realized that I was wrong—terribly wrong. I realized that NOT sending Meghan to her residential school (and I’m stipulating her school) would be the true act of failing her. By not sending Meghan to residential school would be saying that I didn’t believe in her, her future and her ability to succeed. What I thought was selfish on my part—sending her away to school and in the care of strangers who could do the job better—was instead sending her away to a school with “many” trained teachers who could help her. I realized that this was a gift with a disgusting name in a cold and uncaring disguise. A gift to her, and to me, and to our family. It was gold.

I also came to realize during this crazy, surreal and transformational year, that this was just the start of her success story—not the end of it.

Spring, spring; it's here, it's here!!!

2009-04-16T16:08:00.009-04:00

My kids will be home all next week for spring break, and Nick will come home from school this afternoon and ask for tomorrow off to start his vacation a day early… Hmmmm?? Anxiety or manipulation?? What to do?

Meghan will be home for the entire week. This will be a good...and fun...and lovely little break for all… and by Thursday, I will be a complete nut job (that is: more so than I am already).

I will require many trips out to bathe in the warm sun (there had better be sun or I’m gonna hurt someone) and enjoy some relaxing drinks.. (um, apple martinis come to mind); so while I walk around like a crazy person and sweetly sedated by liquor, I have just one assignment that I want to do for Meghan:

Paint her room.

Paint all of our rooms, actually--and the family room too. And the porch railings, and fertilize the lawn, repair the Adirondack chairs (J.C).

Anyway, my problem is this… I need to find out what color Meghan would like me to paint her room. I have, at one time, laid out swatches of color to have her pick her favorite, but to no avail; she just pointed to each one and recited the color---she's so proud of her “color speaking skills.” But I want to know “which” color to paint her room—or what her favorite color is, frankly—but she doesn’t understand the question.

Any suggestions? Please be my guest.

Otherwise, I’m going to go with Apple Martini green!!

Ohhhhh!!

And interesting to note: I have been wearing a shirt on my body for hours now—one that I didn’t recognize as my own, and much bigger... so I thought, hmmm, where the heck did this come from??” Anyway, it looked good on me so I decided, hmmmm, who cares, it looks good with my jeans!!

So out and about I suddenly noticed a little tear at the sleeve and thought--OMG, it’s Meghan’s shirt… how did I not known?

The bottom line: Meghan has been living outside our home for several months that I didn’t even recognize her shirt.

New Book Release -- The First Year, Autism Spectrum Disorders

2009-04-15T09:13:00.009-04:00

For all of those just starting their journey and research into autism... this is a must read!! Pass the word around if you know someone who could benefit from this book!

A Message From Da Capo Lifelong Books:

I’m writing to let you know that our new book, The First Year®: Autism Spectrum Disorders, is now available. In this important new book, Nancy D. Wiseman, founder of the national organization First Signs, Inc., walks parents through everything they need to learn and do if they suspect their child has autism. Offering both compassionate insight and a wealth of information, it will provide parents with the range of care, treatments, therapies, and services available for their child’s needs.

Praise for The First Year®: Autism Spectrum Disorders:

"An invaluable guide. With this book as your companion, you can help your child live a happy, healthy, full life.”—Kenneth Bock, MD

To learn more about the book and its author, please visit: firstsigns.org

Best regards, Lindsey Triebel
Marketing Manager
Da Capo Lifelong Books,
Cambridge, MA 02142617.252.5284 .
http://www.dacapopress.com/

Happy Birthday Songs...

2009-04-14T11:31:00.009-04:00

Nick’s birthday is today.. HAPPY BIRTHDAY, NICK!!

My parents call all of us on our birthday to sing the HAPPY BIRTHDAY SONG. I knew it was them when they called Nick this morning… based on caller ID and that I have a special tone assigned to their number… so I can tell it’s them w/o seeing the phone. A talent which Nick still can’t wrap his brain around…."How do you always know it's them, Mom???"

Anyway, halfway through the song that they were singing to him, Nick looks up to me to say: "Yup it’s them!!" As if he didn’t quite know for sure… so funny.

Afterward, I started singing him a song too, made up songs that I like to sing around the house every so often…

This was our quick conversation:

"How’d you like that song, Nick?"
Big smile on his face…
"Do I have a talent in this area??"
"Ah, NO!"

Uh-huh! Now that’s my honest boy who’s (big gulp) 15 today! YIKES.

Do I look like someone who has a 15 year old???

Well do I?

HUH??? ;)

And we will be going out birthday shopping with Nick today—to spend his birthday money, and yes, he’s loaded!! Thanks to Grandma, Grandpa, Aunt Sue, Uncle Rick, his parents… And, Yes, he’s playing hookey today. Of course! Then to Grandma and Grandpa’s house for dinner.

Did you hear that? (cue new song..) I don’t have to cook todayyy… Hooray, hooray….No, I won't sing this song because, apparentlyyy, I don’t have a talent in this areaaa… hooray, hooray!!

Awkward, isn't it???

Social Skills Programs, Community Programs, and Camps… Oh, my!!

2009-04-14T10:24:00.009-04:00

This list started off as only one resource, and then it grew out of control… How fun!!

For those living in the Seattle area, I recently read about this program:

PEERS - Program for the Education and Enrichment of Relational Skills; A teen friendship-making program.

This program offers social skills intervention for motivated teens in the 7th-12th grade who are interested in learning ways to help them make and keep friends. During each group session teens are taught important social skills and are given the opportunity to practice these skills in session during real play activities (e.g. playing sports, board games, etc.). Parents are taught how to assist their teens in making and keeping friends by providing feedback through coaching during weekly socialization homework assignments. Regular attendance is imperative and parent participation is required.

More about the success of the program here.

For those in Massachusetts: A friend gave me the heads up for this program. Massachusetts General Hospital is offering workshops and social skills groups for your child with autism. There is a summer social skills program, offered in Wellesley, and will run for 2 weeks, three different sessions, 9:30-12:30. There’s also an after school program being offered. Check out the program and rates here. http://www2.massgeneral.org/youthcare/social_club.html#location

I would love to have Nick attend this social skills class (it sounds great) but Wellesley would be a difficult commute for us this early in the morning.

Also in Massachusetts: Community Autism Resources is a wonderful program dedicated to helping and teaching children with autism through community programs. I have participated in several programs offered through CAR in the past years, and plan to again, for family time at Wellsprings Farms, while Meghan is home for spring break….Check out the calendar for spring here…. CAR also offers other links to programs such as, social skills groups, IEP help and Circle of Friends …

Summer camps: For those living in southeastern Massachusetts, Hanikids have great programs for all ages and special needs.

I asked Nick what he wanted to do this summer: handikids camp or sailing at the Duxbury Maritime, and he chose sailing. If anyone is in the Duxbury area this summer, here is the link.

Check out camps for kids—day/overnight for all kids—in your area.

For Everyone: Model Me Kids social skills training DVDs.

HELP: If you know of other social skills programs in your area that seem interesting, please let us know in the comments, or email me and I will let the word out…

Suggestion: my local Arc (Plymouth, MA) also offers social skills groups on an ongoing basis. Check out your local area Arc for groups and let us know at Fearless Females.

Note: all of these resources are also provided in the Resources links of this website...

Literally Autistic

2009-04-09T08:30:00.010-04:00

I don’t know why, but I keep referring to Nick’s ipod as his iphone…With his hands held open and his arms out wide, he tells me: “I don’t have an iphone, Mom!” He thinks so literally and sometimes lacks the creative thinking to substitute the correct word for my misspoken word (or vice-versa??), or in this case, the correct object…even though it sounds almost similar.

Sometimes I just want to yell: Ughhhh!! You know what I mean!! But he doesn’t really. And I’m still trying to work with him and teach him that people are “only human” and that they make mistakes—and all the time, too…. But then we’d just get into the whole discussion of “why are you mad, Mom? He thinks I'm mad when I'm simply exasperated, and thinks that I’m angry when I’m simply making a strong point! And in case you haven’t guessed, I just really want to say to him:

Hey look kid, I’m simply a product of my own mother—one who always appeared to have an extreme, and before her years case of dementia—to say the least.… So I grew up acquiring the fine art, or skill, of being able to play an interesting game of word-decoding and filling in blanks when needed; that is, putting pieces of stories together and making sense out of the jumble. And let’s not even mention being called three different names before coming to my own…and without taking it personally! So give my 42-year-old brain a break, would ya? Besides, a few centuries ago, most people would’ve been on their deathbeds at my age!!

But, of course, I wouldn’t dare say anything like that to my boy! I could never. I wouldn’t hear the end of the discussion—debate—theories—obsession—traumatic moment-of-a-14-year-old-boy’s-life… and the list could go on and on…

Especially the “death at 42” part…Whoa! I would hear something like: “WHAT, people don’t die at 42, they don’t die until they’re 100, Mom (like on the dot), you know that!! So stop making up stories!” Even though he runs—like a racehorse—to the nearest TV when he hears about death and dying on the news (and before the age of 100)… And I won’t even mention how he took the news about how cats only live ‘til about 20… “WHAT, but that’s just a teenager!!” Don’t worry; I’ll spare you—my good, loyal readers—the in-depth details of that particular discussion… But here’s how the rest of the ipod/iphone story went…

“Why do you always get things wrong, Mom?”
“I don’t know… I was distracted.”
“Why are you always distracted, Mom?”
“I don’t know, it just happens to moms.”
“Like Grandma?”
“Yes.”
“Why does she always get things wrong?”
“Because she’s getting older…and that just happens sometimes…”
“What? she’s not old…100 is old, what are you talking about, Mom? Stop making up stories!!”
“I know, I’m only kidding…”
“Is Nana old?”
“Well, she’s 82..”
“Is that old?”
“Yes, a little”
“Yeah, she got all wrinkly already!!”

Hey, got wrinkles?? ;)

Have a wonderful Easter, or Passover…

Autism Advocacy

2009-04-08T14:20:00.004-04:00

Lately I’ve found myself looking more closely into an autism advocacy group called “Acceptance vs Cure.” And I wanted to say that I was misguided and didn’t mean to antagonize a friend.

As I have stated before, I want both: an awareness--an understanding of autism; and an acceptance of autism for the sake of our children—don’t we all?

However, I do support the studies of autism; to learn and understand more about autism and other similar disorders.

Some people believe that autism should be left alone and accepted for who they are in this world, as a difference. I agree to a point. I certainly want my children accepted in this world for who they are—who the hell wouldn’t? I also believe that my daughter is who she is—her strong, vibrant and playful personality defines her. I only wish that some of her own personal struggles with autism could be resolved, like: comprehension and verbal language ability, sensory overload and behavioral issues; if only to help her live an easier life.

I found this quote from Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, I think he says it eloquently:

"I do think there is a benefit in trying to help people with autism-spectrum
conditions with areas of difficulty such as emotion recognition. Nobody would
dispute the place for interventions that alleviate areas of difficulty, while
leaving the areas of strength untouched. But to talk about a 'cure for autism'
is a sledge-hammer approach and the fear would be that in the process of
alleviating the areas of difficulty, the qualities that are special - such as
the remarkable attention to detail, and the ability to concentrate for long
periods on a small topic in depth - would be lost. Autism is both a disability
and a difference. We need to find ways of alleviating the disability while
respecting and valuing the difference."
http://en.wikipedia.org/wiki/Autism_rights_movement

In the News...and TeacherVision

2009-04-08T12:37:00.004-04:00

In the news... the questionable and the truly unthinkable:

I find science interesting. I may not always believe what I read—like rain causing autism, but this is interesting: Women who conceive in the spring are more times likely to have a child with birth defects… Read the link for yourself...

And what's "truly" unthinkable: A Massachusetts mother withholds cancer treatment from her 9 year old son---who had autism, and later died of his curable form of the disease. Read here.

Feel free to offer your opinions in the comments...

Also, I thought I would pass this link on to anyone who may be interested. It's called TeacherVision and offers lesson plans, printables, and special need information and helpful suggestions for your special needs child, including IEP information. Great for teachers, parents who homeschool, and all parents....

My Two Stars

2009-04-06T15:09:00.008-04:00

Sometimes I wish my kids were this young again… if just for a little while, so I can still pick them up and hug them tight!!

But, of course, I’m glad that they’re older, and some of the mystery of their lives are solved and their futures are a bit more in focus.

I know that Meghan is in a great school for her, and that next year she will be in a work training program—learning a trade that she likes, and taking on a job that she wants, while working on the building blocks of self-esteem, confidence, and happiness—her life. And when she graduates at 22, she will, hopefully, have the skills and the understanding to live as independently as possible in a group home with good friends whom she can relate to and rely on.

And Nick will move on to high school next year and have a teacher that he had back when he was in 1st grade; a little comfort in a strange new place. He, too, will graduate when he’s 22 and move on toward a work program and live wherever and however he chooses—and home will always be a choice for him. Perhaps in his adult life, and maturity, he will find that one special friend to hold on to and walk through life with—a little protection.

And I will be there, too. To watch, help and advocate for them whenever and wherever they need me, just as I was when I first shot these pictures.

Vacation at Home??

2009-04-03T12:23:00.011-04:00

Sitting here while awaiting Meghan’s bus (and inhaling some chips and dip--salt, I need SALT), Meghan will soon be getting off the bus and running inside. Did you get that, running? Yes she will, because, to her, this is "vacation." Ohh, now I've got the Go-Go's "Vacation" song in my head.

And now it's in your head, too! Sorry! But what the hell, let's just enjoy it .... G0-G0's Vacation, live

Coming home every other weekend is a "real" break from a stricter routine and food menu. Yes, food too. I feel guilty because she just wants to “inhale” food when she’s home (like I'm doing with these damn chips!!), because she can’t do it at school. A food addict or sensory needs? Not sure, but she loves food, and the guilt comes into play because I give in a bit and give her “extra” food that she would not ordinarily get at school. Oh, good mother; bad mother??

A few minutes ago I popped into her room to check on her bed to make sure that everything was to her liking. Gee, I feel like an innkeeper: good food, nice bed, and NO, there isn’t a chocolate on her pillow…that would be ridiculous! (It’s actually stuffed in her drawer!!... Hey, what that heck do you want from me, I’m a mom!)

But on her bed is the newest member of her Winnie the Pooh collection of stuffed animals. It’s Piglet. She didn't have Piglet, so I got her one from Disney World. (Incidentally, she keeps Winnie the Pooh home, and the others are on her bed at school. Not sure why, but I’m guessing it's to make sure she knows she’s coming home (tugs at your heart, doesn't it?). Meanwhile, Tigger and the rest of the crew are with her at school—cute, huh?) And Yes, I was feeling a wee bit guilty that she had to stay in school, and did not come along on our latest trip. But I’m glad that she didn’t; it would’ve been hard on her from what I had heard from school. I get an update every week and last week was no different. The teacher told me that she didn’t have a good week last week… A lot of hand biting and sensory issues, and it seems like it was PMS related. Can you imagine being on the plane, or on a Disney ride, and have Meghan feel overwhelmed and become behavioral? Yikes. It was one thing when she was a lot younger.. and smaller!

I remember one time a few years ago, I took the kids to a fair and, bravely, took her on a “fun” ride: the water, roller coaster ride (semi- coaster, more water ride). Anyway, she had decided that she had had enough and wanted to get off as we were ascending the roller coaster part and then a splash down… I had to yank her down and practically sit on her to make her stay in her seat--while I was having heart palpitations!! Can you see us now? I mean, where did she think she was going to go?

So yes, as I was standing in line for a scary as hell Disney ride--which included heights, I imagined that scene and knew that I had made the right decision--to make this trip just about Nick!

And I’ll admit, I had a good break too!

And the Vacation song is over..... so sad!

A Run for Autism

2009-04-03T08:30:00.007-04:00

Please help sponsor a friend running in the Boston Marathon. You know the “run;” the arduous, 26-mile trek from Hopkinton to Boston…. Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life.

So far she has raised a little more than $3,000 and needs your help ... today!

Please spread the word about Christine Carlson (who is amazing, by the way). Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

Here's more about the Autism Language Program (very interesting and necessary for kids with autism who cannot communicate verbally---like my daughter, and probably someone you know too!) : http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html

Obsessive Compulsive Disorder (OCD) Online Support Group--New

2009-04-02T07:37:00.005-04:00

Do you, or someone you know or love, have OCD (Obsessive compulsive disorder)? I know people who do. Beth Green, a volunteer for a new, free OCD online support group, wants your help to spread the word. Read more and click on the link to join in ...

My name is Beth and I volunteer to help spread the word about a new free Obsessive compulsive disorder online support group.

As I know this falls within your interest I thought that you might want to help us in the quest to reach as many people as possible (the more people know about the group the better help they will get). You can support us in many ways (not financially): telling people you know, linking to it, writing a blog or forum post and participating in the group discussions.

Your help is much needed and any support will be most appreciated.
You can check out the group at: http://www.mdjunction.com/obsessive-compulsive-disorder.

Have a great day,
Beth

Sincerely,
Beth Green, POB 200067, Pittsburgh, PA

April Vacation at the Zoos

2009-04-02T07:17:00.005-04:00

Need to keep the kids busy during April vacation? The folks at Stone Zoo and Franklin Park Zoo wanted me to pass along some fun activities taking place at their zoo...

Bunny Bonanzoo
April 11, 11:00 a.m. – 3:00 p.m.
Stone Zoo

Hop on down the bunny trail to Stone Zoo where an Easter celebration awaits! Activities include holiday games, crafts and seed planting. Be sure to visit with our special guest, the Easter Bunny, who will be ready to smile for photographs.

Conservation Week
April 20 – 24, 11:00 a.m. – 3:00 p.m.
Stone Zoo

While school is out for April school vacation week, have fun while visiting the Zoos! Each day will offer a variety of engaging and educational activities for kids of all ages, as well as many helpful hints for preserving our planet.

Stone Zoo info

Hours of Operation: Summer Hours (April 1 – September 30)
10:00 a.m. – 5:00 p.m. Weekdays
10:00 a.m. – 6:00 p.m. Weekends and major holidays

General Admission: Adults: $9.00
Senior Admission (62+): $8.00
Child Admission (ages 2-12): $6.00
Children under 2: Free
Members: Free

Address: 149 Pond Street
Stoneham, MA 02180
Ph: 781- 438-5100

Website: stonezoo.org

-----------------------------------------
Conservation Week
April 20 – 24, 11:00 a.m. – 3:00 p.m.
Franklin Park Zoo & Stone Zoo

While school is out for April school vacation week, have fun while visiting the Zoo! Each day will offer a variety of engaging and educational activities for kids of all ages, as well as many helpful hints for preserving our planet.

Animal Survivors Spring Break
Come spend four fun-filled days at Franklin Park Zoo during spring break! This year’s theme is Animal Survivors and we’ll explore the relationships between predator and prey, as well as the unique adaptations animals have that help them survive in an “eat or be eaten” world. Topics include habitats, adaptations, predator-prey and extreme survival and are taught through interactive presentations, keeper encounters, behind-the-scenes tours, games, crafts and more!

For more information, call 617-989-3742. Class sizes are limited – advanced registration is required!

Participant Ages: 6 – 10 years old
Location: Franklin Park Zoo
Dates: April 21 – 24 (Tuesday through Friday)
Prices: $150 Members, $175 Non-Members
Time: Drop-off: 8:30 – 9:00 a.m.; Pick-up: 3:00 p.m.

Earth Day
April 26, 11:00 a.m. – 3:00 p.m.
Franklin Park Zoo

Come celebrate Earth Day with crafts, activities, animal encounters and environmentally-friendly exhibitors at Franklin Park Zoo! Did you know Zoo New England supports conservation efforts both locally and abroad? Throughout the day, we will celebrate the great diversity in the animal kingdom with all of the incredible animals that call our Zoos home. Discover all the different ways that you can have fun while helping our planet.

Franklin Park Zoo info

Hours of Operation: Summer Hours (April 1 – September 30)
10:00 a.m. – 5:00 p.m. Weekdays
10:00 a.m. – 6:00 p.m. Weekends and Major Holidays

General Admission: Adults: $12.00
Senior Admission (62+): $10.00
Child Admission (ages 2-12): $7.00
Children under 2: Free
Members: Free

Address: One Franklin Park Road
Boston, MA 02121
Ph: 617-541-LION

Website: http://www.franklinparkzoo.org/

Back from Vacation; Back to Reality!!!!

2009-04-01T08:49:00.016-04:00

Woke up this week to some pretty extreme anxiety issues. Not me—Nick. I was a little surprised, because with the break last week (Disney trip), I thought he might be back to his usual self. No. Actually, he’s a lot worse off this week. Gee, I thought going on three roller coasters would have done him in; but no--school--not Space Mountain, is the culprit…

Who would have thought?

To be very honest, my anxiety was high during some of this trip. Going on Space Moutain, and twice, did me in---and yes, I screamed; and I had to hold my sister’s hand (like a scardy cat ) on Soarin’, I mean, OMG—it’s simply not the thing to do if one is deathly afraid of heights---um, that would be me! But it was an incredible ride when my eyes weren’t sealed shut! Experience the ride yourself on this you tube that I've found: Soarin You Tube.

Oh, but I digress; Nick actually had to take yesterday off because his anxiety was much too high… I couldn’t make him go while he looked like he was about to have a panic attack. Instead, I emailed his teacher about the issue and she told me that she understood about his anxiety and will do everything to alleviate his stress. This includes not going to his homeroom class after going to his locker. Instead, he will be met with an aide to go to his lifeskills classroom (smaller class and easier for him to manage) and then he will be accompanied by an aide for his other classes. The teacher will also give him a special journal to write about his anxiety when he feels the need. (I have a feeling he will be writing a book today.).

Anxiety at school will surely be continued….

But Nick had a ball with his two cousins at Disney World… Here is a little preview…

Nick at Magic Kingdom... We visited Magic Kingdom, Hollywood Studios, Epcot, and downtown Disney.

Epcot; London in Epcot; Nick and me at the entrance of our hotel; the view of the river at our hotel (we stayed at Disney's Port Orleans French Quarter Resort); below is an artist's cartoon drawing of the kids...

Vacation....

2009-03-23T08:26:00.003-04:00

... hope you check back soon....

What a great teacher, principal, psychiatrist, pediatrician, nurse, shoe store..

2009-03-19T09:01:00.007-04:00

First, what a great teacher…

As a continuation of my last post (anxiety issues at school), Nick’s teacher sent me this email the very next day:

Hi Mrs. Collins,
I sent Mr. S., the principal, an email regarding the lockdown. Attached is his
response. My GUESS is it will be this week, but please be sure to tell Nick I spoke
with Mr.(Principal) and the alarms are NOT expected to go off. I know Nick talked to me
yesterday about being nervous about the loud noise from the fire alarm.
Thanks so much,
(Teacher)

Hi (Principal),
My student Nick is VERY anxious about the lockdown drill. Do you
know if the fire alarm will be going off, he's worried about the
noise.
Also, I know we aren't supposed to know when it is, but he is
leaving for Florida on Monday and I don't want him to continue to
be upset the rest of the week. Is there any way to know if we are
having the drill this week? He now needs to be walked to class
with a para because his anxiety is so high. I also have his
mother's cell phone number to call her if we have it while he is
on vacation so he won't ruin his vacation worrying about the
drill.
Any help would be greatly appreciated. Thank you so much.
(Teacher)

Hi (Teacher),
The drill will be sooner than later. His vacation will not be ruined. In
fact, he will be relieved. The alarm is not supposed to go off during the
drill. Thanks.
(Principal)

What’s also great is that Nick’s psychiatrist got my message about my concern about him needing more meds (based on what I have noted about Nick)… and his response was: he agreed and has already called in a new script to the pharmacy… and all within a 24 hour period, too…. Hey!!

And don’t look now but we seem to be on a roll… I left a message for the pediatrician asking for a note, stating that Nick has autism, so that we can get a disability pass at Disney… Even though I kinda felt like a heel ... I mean, I called and had to leave a message on the nurse’s "hotline" number… “Hi, uhhhhh, I know you're busy, but, um ... we’re going to Disney next week and I wanted to get a, uhhhh, note from the doctor saying that my son has autism so he can, um (cut in line and be first for rides at Disney), get a disability pass" … Ugh... But, the nurse called me back--2 hours later-- (same nurse as always—nice woman) and said, “Of course we can do that, no problem…. Who do I address it to at Disney?" Whoa!!

And they had the letter ready for me the very next day.

Hey, we’re getting some good service around here!!

And I'm feeling so good that I'm running off to buy myself a new pair of shoes!! Yum ... They're nice designer ones at Marshalls for only 30 bucks... Hey, some healthy, guilt-free shopping-- just for me!!

Anxiety Disorder and Autism

2009-03-17T10:52:00.006-04:00

As of the last week, or so, Nick’s anxiety has increased at school—and going to school, as well. About 3, or so, years ago, I had to take him to a therapist and a psychiatrist (for meds) to help him with a, almost debilitating, case of anxiety. We tried Luvox to relieve the anxiety and OCD, and it has worked, wonderfully, for these three years, and on a low dose, too. Just to reiterate, the OCD was like being hen-pecked with his perseveration about obsessive issues—like being nervous at school. I would hear: "I'm nervous in school, Mom" about 10 times just in the 20 minutes he would be getting ready for school. And my response? Well that was well practiced, too. I mean, if I didn't just say: "I know you are Nick," then he would get upset... apparently he just wants to hear those words--and nothing else--to help him through the issue...

So, I asked his teacher if she’s noticed an increase in anxiety at school—and that I would be calling his doctor to see about finally increasing the dose—I mean let’s face it, he’s only on 50 milligrams and went through 2 growth spurts since starting the meds (he’s now 5’7, and 14 years old), so I thought it just has to be the meds, but I just got this e-mail from his teacher…

I'm thinking part of Nick's anxiety is that we are planning a practice
lockdown drill. We don't know when it will be happening, and he is very nervous
about the whole process. We have stressed to him that it's just practice so we know
what to do in the event of an emergency. We have practiced them within the
classroom and they have talked about them in each class he attends. Until the
practice lockdown passes, an aide has been walking with him to his classes, rather
than going independently, to help with his anxiety. I'm hoping once we have the
practice lockdown, Nick's anxiety will be alleviated, as I'm not sure there will be
another practice one this school year.

Other than the lockdown, nothing else has changed here at school. He was slated to do the Pledge of Allegiance on the intercom this week which he has been practicing for months and really excited about, but has decided not to do it this week, he's just too nervous about the lockdown. Maybe he can try again later in the year.

Something to mention to the doctor; however, I’m also experiencing more frustration at home.. So I think I will be upping his meds… Tough call!

Any thoughts?

Art by Two Autistic Kids

2009-03-12T19:06:00.017-04:00

Tooting Nick and Meghan's horn!!

One of Nick’s paintings was on exhibit this week at the Plymouth Center for the Arts through his school program called: Plymouth Public Schools’ Youth Arts Month Exhibit.

Obviously, the "artist" is not standing next to his work of art because he was embarrassed and damning me the whole time (at least that was my interpretation). Nick is a very shy guy, and if he knew that we were there for his painting, he would have refused for us to go, rejected the whole idea, and cursed out his art teacher (at least to me) for the “What’s the big idea” for hanging one of his paintings for exhibit, and for all the world to see, too!! ........... Ok, well just Plymouth!

But he noted his painting while we gushed and praised and asked for his autograph--and if it were up to me I would have called the local paper, too!! But Nick turned and walked away--as a shy, modest guy just might do.

But I was very proud of him. Not only for his art, but for what he didn’t say to a lady who was sitting in the reception area and asking people to sign in… She had a face condition, not sure what it was exactly, but it did look pretty shocking… and if the previous years were any indication, my kids would have let her know it, too. Meghan might have walked right up to her and examined her (like a doctor)… and Nick would have mentioned to me that something was wrong with her face in the most descriptive way he could… and within earshot of the poor woman, too--um, like right in front of her face…

Oh, those were the interesting years…

But not this time; Meghan didn’t make a scene and Nick waited, at least until we were safely back at our car, to say: “Hey, Mom, that lady's face didn’t look handsome.”

"Yes, Nick, I know, not everyone can be as handsome as you--or talented!!”

Being careful not to hurt someone's feelings (or understanding other people's "feelings") isn’t something Nick completely understands--still--but a least he has learned to discuss his “observations” with me in private!

Take a look at his recent skeleton and Meghan’s mask (or face) painting that is hanging on my wall:

Weekend Review

2009-03-11T13:13:00.009-04:00

Unfortunately we didn’t have the best weekend with Meghan while she was home this past weekend. She wouldn’t go out with us very easily. We went to an art exhibit in our town that featured one of Nick’s paintings (more about that on my next post), but then that was all she was willing to do. We wanted to walk around Main St, Plymouth and check out some of the shops, just minus the antique shops with lots and lots of old and expensive glassware—Meghan has motor-spatial issues and she and glassware do NOT get along!! (Um, you may want to use you overactive imagination for just a few minutes now, and then do your quick little laugh, thing!! Don’t worry; I do it all the time!) However, she redirected me back to the car and didn’t want to take that walk …

Then we drove by a favorite casual place for dinner (for barbecue and ribs, oh yum!!) And I could just taste the pinot noir that would be waiting for me and calling out to me… come, come and drink me!! But then we "unanimously" realized that the noise and the seating would not work out for Meghan (sensory issues). In fact, if we happened to be at a restaurant that seemed loud and visually overwhelming for her (like TGIFs), then she would not do well, e.g., bite her hand in frustration, not focus, fidget and need to use the bathroom—a lot, and all of these are the fine makings of one huge temper tantrum—that means a smashed up table and coke on our laps (and one mom (me) sucking down some major wine!!)

So we drove along (very quickly) after imagining the “could be” scene at that one place… And, again, usage of your overactive imagination will work fine here, too!! And, so, we drove down the street to the beach. It was a nice day so we decided to take a walk, climb the rocks (our beaches are super rocky) and listen to the rolling ocean and the seagulls squawk….Ahhh, peeeeeace….

But, not really!! You see Meghan didn’t want to walk on the sand. A new sensory issue? Not sure. But this wasn’t the first time she refused to do what used to be a Meghan-all-time-favorite. Sigh!

So we continued to search for a restaurant that she wouldn’t reject, and after 30 minutes and continuous hand sign rejections (um, sign language that does not involve a finger—thank you very much!!) we drove home—humbled, confused, frustrated and hungry. We ordered in pizza and pasta, and Meghan ate the pasta.

Since Meghan has been living at school, we almost forgot how tough just going out can actually be with her. I’ve become very spoiled!! I've forgotten how everything used to be planned and plotted, questioned and imagined… and not without great tension! Nothing was taken for granted, and usually one of us (me) would have been on “alert status” at all times. Tough going!

Consider my new issue: Meghan loves to go sledding so I thought that we would take her to the mountains where there is tubing—I mean she’s doing so well at school and will kind of tolerate more outings…. So here’s the thing: since the snow has melted where we live, I thought that we could take her to the mountains in western Mass. or N.H and go tubing. But, what I’m worried about is that she might not get on the lift, or worse--panic, or that she simply won’t get out of the car after driving all the way there. And then we’ll have to consider food choices and restaurants that she may or may not eat at…. And if you have an imagination and a keen understanding of sensory issues, then the list goes on and on… Should I just forget it or try it? I really want to do more with Meghan, and have the type of fun that I know we can have as a family. I mean--it’s about time, isn’t it!?

But then again, my imagination always precedes me.

And I can’t even tell you how guilty I’m already feeling about going off to Disney World in a couple of weeks--without Meghan. We have never gone on vacation without her before, but for this trip—and to crowded and overwhelming Disney, we wanted Nick to have a real vacation with his parents and his two cousins who are also coming along. A little time for--just Nick--because he’s been so patient with his sister, and has lost out on a lot!!

Oh, the trials of raising two kids with different issues!! I’m sure most of you can relate!?

Nick and his cousins who will soon be enjoying time together at Disney!!

Social Skills Group on South Shore of Boston

2009-03-10T08:07:00.004-04:00

I am still looking to start a group for kids with Asperger's Syndrome or high functioning autism on the South Shore (south of Boston). I've noticed that there aren't many --or any, rather -- social groups in my area for Nick to enjoy. As you may know, kids with autism have trouble making friends and being in social settings--and Nick is no exception. I'm not sure about your child, but Nick doesn't have many friends outside of school to do activities with or to meet up, so I thought that starting a group of friends (on the south shore) might be a great idea ... Leave a comment or send me an email if you are on the south shore and have a child with high functioning autism, and are between the ages of 6th grade - high school (Nick's in 8th grade) and wish to do fun activities together (start a social group): go bowling, rock climbing, arcade, ice skate, ski ... etc..

***Update*** So far about 3 moms have emailed me, some are also interested in a mom's dinner night out!!

http://fearlessfemales.blogspot.com/2009/01/social-group-for-kids-with-aspergers-or.html

Chicken Fingers and Mac and Cheese

2009-03-06T08:53:00.008-05:00

One of the biggest problems that we’re currently having with Meghan at home, and at school, is her need for consistency. I know, I know, kids with autism need to have a consistent schedule, however, Meghan also wants her food to be consistent, as well.

Lately, her only SIBs (self-injurious behaviors) have been around food selection. Meghan loves to cook, so she chooses to help with dinner preparation at her house. However, she wants to cook the same meal over and over again every single night—chicken fingers and mac and cheese. (Ohhh, I know--ideal comfort foods, how can you blame her!??)

But it just can’t be; it’s not healthy to eat the same food over and over again, especially chicken fingers and mac and cheese. I’m not sure why this is happening; she was never like this before—needing to eat the same foods over and over again. I’m guessing it could be one of two things:

When she comes home (every other weekend) she likes to make Chicken Cordon Bleu (chicken filled with ham and cheese) so we make it with her since she likes to cook. It’s funny too, because every time I make this with her I’m reminded of something Nick said a few years back, when we first started making Chicken Cordon Bleu. He said: “Uh, no Mom, it’s not Cordon Bleu, it’s Cordon Yellow” (we use yellow cheese) —like duh, what’s wrong with you, Mom!! It’s funny—sometimes Nick thinks he’s so right and the world around him is sooo wrong!!

So perhaps Meghan feels it’s like a little piece of home life at school? Could she be that nostalgic? Or it could be that chicken fingers (breaded strips of chicken) is the only thing she knows how to make (and likes to make) so she, and everyone else at her house, will just have to eat it Every. Single. Night. And for the rest of their life, too... Damn it! (Some restaurant she’s gonna own someday: “Meghan’s house of chicken fingers and mac and cheese—don’t you dare ask for anything else…” Come to think of it, it just might be a winner!!)

So I’m wondering if I should stop with the chicken when she comes home? But I’m not sure we can, since she looks forward to it so much!?

Natural Therapy for kids with autism

2009-03-05T11:15:00.003-05:00

I received this interesting website from its owner, Kaliana, who is an emotional care expert with 30 years experience in natural healing. She uses what she terms as “Combination Therapy,” combining many forms of therapy in one: herbal, aroma, color, sound, etc. As a person who believes in the power and benefits of aromatherapy, I was intrigued. Read more if interested and curious!!

And let me know what you think?

http://kaliana.com/content/childrens-study

Kay and Flo

2009-03-03T19:56:00.007-05:00

I recently saw the Discover Health documentary on Kay and Flo. I know other bloggers have mentioned them on their blogs in the past, but after seeing the documentary for myself I was in tears.

In case you’re not familiar with these unique and incredible women, they are 50 years old identical twin autistic savants who grew up in NJ and have been passed around from family to family after their parents died. Their younger sister took them in and cared for them as if they were her own children, until she tragically died of a sudden heart attack. The women were forced to try and understand the tragedy of death in a world they didn’t completely understand. Their fragile world consisted mainly of their rigid daily schedule—as most autistic people tend to naturally gravitate to or require in order to feel comfortable and secure in an uncertain world. For these women it was the 100,000 Pyramid to feel secure—an obsession with this game show and with Dick Clark, who would later become their hero; their daily ritual; their lifeline and something and someone predictable to hold on to.

The amazing thing about these women was their unique savant ability or savantism, which was their uncanny ability to recall dates and times of events that happened in history, even events that happened before they were born. When asked about a certain moment in history, they could recall (within second) the day, date and time it occurred—like a human calendar. However, when asked about emotions and feelings based on a hypothetical situation, they were not correct in their assumptions.

What also struck me about these women was their innocence about the world around them. They were so dependent on family member for help and daily living assistance that it was sad and sometimes scary to watch. Throughout the hour program, I thought about my daughter and her life—as one might assume—and even though her life and circumstance is and will be different from these women, I learned more about what I don’t know about my daughter. As the world got to know more about these two articulate women, I learned that I don’t fully know my own daughter’s inner-thoughts, interests, feelings and what makes her scared, sad, or depressed. Today, I can only guess what she thinks or feels based on her reactions to things, places, sounds, smells—because she’s non verbal and still has not acquired the skills to write—as a conduit—to share or express her personal thoughts and fears …

As I was sitting there watching and feeling sad for these two vulnerable and unique women, I was feeling even sadder for my own daughter. I cried for her. I cried while watching my daughter’s world of autism through the life of these women, listening to their problems and their joys and trying to understand their thought process …

The program took an interesting turn as the world got to see how they reacted to their hero, Dick Clark, and the news of his stroke, and to the inevitable moment that the 100,000 Pyramid would no longer be broadcast on national television—an unexpected blow. They told the world how depressed and despondent they’d become—as if their world had dropped out from under them. So vulnerable and innocent that it struck me with immense fear—a fear for my daughter in a world that doesn’t understand her. Unlike these two women, she has no true partner in crime, confidant, or a sisterly-bond and a human connection like no other. She has no one person who completely understands her—who can relate and comfort her especially in a world that can be so cold and hostile—and when the definition of hostile seems to be one in which the world stops airing a favorite game show.

But these women have each other to walk through life with--a benevolent shadow in an uncertain darkness—two flowers that sprung from the same seed in its own unique garden. They are one in the same and different from the rest.

So I cried for my daughter who lives in a world all alone. With no one person to truly rely on, to relate to, to converse with and be understood—at least not in a way that speaks to her and that will keep her safe.

When the program ended it appeared that these two women would finally receive the help that they needed and would be welcomed to a group home that would encourage independent living—together, of course—and that they were going to be just fine. But I was far from fine. I wanted nothing more than to hug my daughter real tight and tell her that it was going to be okay and that I would never let her feel alone or insecure or vulnerable, and that I would always be there if and when she needed me—as her benevolent shadow in an uncertain darkness.

But, of course, I couldn’t do that, at least not that day, because she wasn’t there. She was somewhere else--forced to face her own fears, alone, and in the dark.

"What's ...."

2009-02-28T10:33:00.008-05:00

“What’s a Dick?”

Oh Geez, here we go again, influenced by kids and hearing things he doesn’t quite understand because he takes things so literally, so I have to try and explain—such as the life with autism.

“Where did you hear that, Nick?”

Impatiently he says, “I just know it.” Which is my cue for: just tell me what I want to know and stop asking me so many questions—such as the life with a teenager…

“Well it references a boy’s penis.”

“Uhhh, N000!” Embarrassed smile.

“It’s not a nice thing to say. Some kids call kids this when they’re just kidding around… but it’s usually said when someone is mad at someone else, like calling someone a jerk. It’s not a nice thing to call someone.”

“It’s not a nice thing to say?"

“No.”

“It’s mean?”

“Yes.”

So I start talking to myself… just not out loud, this time… Please, please don’t tell me that someone is calling you a dick, please, please, oh, please…

“Oh, so my Grandpa is a dick?”

Huh?? ....... “Oohhhh!!!" “Uh hum" (throat clearing uncomfortable moment), "um, in this case, Yes, Grandpa is a Dick ........ his name is Richard and his friends call him Dick!! It's a nickname and a name!!”

Oh My and Phew!! And big smiles all around...

And a lesson learned for this mom—don’t always assume the worse case scenario!!!!

And poor Grandpa..... ;)

Octuplet Mom and Autistic child and Babysitter adventures or nightmares

2009-02-26T09:37:00.007-05:00

This ended up being a combination of two posts …

First off I wanted to ask if you’ve heard the latest about the newest mother of 14. I’m talking about the single, unemployed mom who has given birth to octuplets (3rd in the world) in addition to her other 6 children. I know, trust me, it’s just as hard to write that number as it is to read it. But I’ve just learned that one of her children has autism. Good grief! And as you may already know, the chances of one (or more) of the newest 8 also having autism is higher for her because she already has an autistic child (and same donor); next to the fact that these children could have other issues like PDD or other disabilities that preemies are at risk for.

This mom is in her early 30s, done with having children—We. Can. Only. Hope. And is now going to care for 8 newborns—again, that’s eight babies--all at once! And not including her other 6 young kids—that’s six! Equals 14. And she’s going to do all of this while going back to school for her master’s degree in psychology. HELLO!! And, psychology? now isn’t that ironic? I mean, who in their right mind would ever think about potentially having 14 kids (IVF), with no job, no money, almost no house, and no husband… and don’t forget, one of her kids is autistic. Now that’s a real question! More about her story here.

Good grief. I know, I said that already! Now one could either bow to her and worship the saintly ground that she walks on or call her an unfit mother for being, well—selfish. Selfish for putting her needs and her wants before the welfare of her children… again, ironic.

And what’s on everyone's mind now is an interview with the doctor (Dr. Michael Kamrava ) who implanted the 6 embryos when the single mom already had 6 other children and questionable mental health issues. The state medical board apparently also wants one, too, and is now investigating.

Personally, I could barely handle 2 autistic kids as a stay at home mom--with a house, and a working husband. And as my kids grew to 2 and 3, I was cranky and exhausted and I could only dream of having a babysitter… at least. I guess octuplet-mom is now getting one (or perhaps a crew) and thank goodness for the sake of the children—read here.

Which leads me to tell you about my adventures with babysitters. Funny, sad, pathetic?—you tell me: One day a wonderful (saint) older woman—who was also a family friend— begged to come and baby-sit for me. I was too busy laughing hysterically before realizing that she wasn’t kidding. I, of course, took her up on the offer and was determined to have a good time out—considering that I thought it would be my last…

This wonderful woman drove almost an hour to get to our house. We greeted her at the door with huge smiles and hugs, seated her at a nice spot on the couch--perfectly placed in front of the TV, clicker in hand. We hosted (bribed) her with appetizers and beer—poured before her very eyes into a freshly chilled glass… Now how many people give their sitter a beer? huh? Case in point—we were desperate! We had made sure that she was all set and that our children were freshly washed and in their pjs with books piled up high before them on the couch hoping that they looked, well, busy for a while--or at least until we actually left the front porch …. And ran to our car … burning rubber out the driveway…

But it worked out great and the babysitter actually came back, too.

But then one day we got cheeky and moved. We moved away for the sake of our sanity and our children’s education… (a little inside joke there). We moved to an ocean-side community and to more educational opportunities… and more babysitters, too? Well that was a different story.

We had money from the Arc for a PCA (personal care attendant) and then we received even more funding (DOE Fund) for Meghan through the state (DMR) because of the severity of her disability. This fund is usually given to people whose next option would be residential school. It was a desperate attempt to keep her home… But, the hidden secret to this hopeful promise was that the choices of helpers had become a huge problem in itself, hence…

Babysitter from hell number 1: she was a young 21-year-old pathological liar. Yes, one discovers this sort of thing when one has an almost daily presence in your home. And the stories would keep you entertained for days… and did. Let me humor you with a little taste: Lie #1, she was in college—an almost finished—with her degree in speech therapy. Uh, Nope—lie. Lie # 2, she actually had a car to get to work. Uh, NO. Lie # 3, she broke her arm one day and had to go to a bone specialist—her exact words. The very next day she came back to work with no cast, but a sling, and was using her, um, broken arm on numerous occasions w/o the aide of her “cast-sling-thing”… Then one day, she just never came back. No call, nothing.

Babysitter from hell number 2: a real college student (studying for her OT license)--oh yay, you say? Come to learn very quickly that she had no interest in the field. None. Actually, she had no interest in babysitting either. None. Actually, she was afraid of my kids and wouldn’t go near them unless forced, actually!

Babysitter from hell number 3: She was a culinary arts teacher who got laid off and told me that she really, really, really wanted the job. After about, what--10 minutes-- let’s just say, she was working with Meghan and Nick took a temper tantrum which caused Meghan to cry out and scare babysitter number 3 and bye-bye babysitter number 3, because she grabbed her jacket and ran out of my house … really fast!

And last but not least, babysitter number 4 was really special. She was about 20 and told me a few days after I had hired her that she was pregnant… Oh, joy! So what do you think happened next? Well let’s just say, to an observing eye, it may have appeared that I was working for her… Hard to fire someone who obviously needed a job, now isn’t it? I did get lucky though, because she was confined to bed rest early in her pregnancy and had to stop working … Yahoo! Then she went on welfare.

I was done. Done! Did you hear me, DONE!

Then something wonderful and almost magical happened--my brother--my flesh and blood who would do me no wrong, decided to take the job. Ahhh, and cue that oh so familiar song: Hallelujah….

Oh, and I do hope the best for octuplet-mom and her 14 kids …

Franklin Park Zoo fun and Sing-a-longs in March

2009-02-25T07:35:00.006-05:00

Ohhh, March, does that mean spring is almost here!!? And the zoo is great fun for all kids, and adults alike, especially since it's getting warmer outside!!

So Leap into Spring! March 8, Franklin Park Zoo, Boston, MA

Year of the Frog may be over, but the amphibian crisis is not. Turn your clock ahead and come learn how you can be a friend to frogs through fun games and activities. At Franklin Park Zoo, celebrate our amphibian friends, as well as the start of spring, with some froggy fun in a special education program! The Leap into Spring program will be held from 10:30 to 11:15 a.m. for children ages 3 to 4, and from 1:00 to 2:00 p.m. for children ages 8 to 10. The additional cost for this event is $8 for members and $10 for non-members (cost includes adult/child pair for the early class). To register, call 617-989-3742. At Stone Zoo, stop by the Animal Discovery Center between 11:00 a.m. and 3:00 p.m. to learn about amphibians. There is no cost for the Stone Zoo program.

2nd listing: Sing-a-Longs with Su Eaton! Every Saturday in March, 11:00 a.m. – Noon, Franklin Park Zoo
Escape the winter chill and bring your little ones down to the always-balmy Tropical Forest for family entertainment provided by our professional children’s entertainer during our Saturday Sing-a-Longs! Wildly popular children’s entertainer, Su Eaton, will perform every Saturday in March. These events will be held in the Hippo Theater at Franklin Park Zoo and are free with general Zoo admission. Saturday Sing-a-Longs will be held March 7, 14, 21 and 28. This event is free with general admission.

General Admission: Adults: $12.00
Senior Admission (62+): $10.00
Child Admission (ages 2-12): $7.00
Children under 2: Free
Members: Free

My son found a new habit ...

2009-02-23T08:57:00.006-05:00

My little boy is now a coffee drinker. Uh, let me rephrase: My little almost 15-year-old baby boy is now drinking coffee. Yeah, he woke up two days ago and poured himself a hot one … Mixing in milk and adding some sugar, he sat down and drank coffee as one who looked like he’d been drinking coffee his whole-hard-lived-long life.

No, I didn’t panic. But I did watch the drug invade my son’s body for the first time with horrified interest… And I started to think back to when I first started drinking coffee...

I was almost sixteen. I know this because I began working at Dunkin Donuts with my older sister (who got me the job) and, of course, drinking coffee was one of the “perks”… so I obliged and then became “hooked”--of course, isn’t that the way?

Light with cream and lots of sugar was how I first blended it. Almost like a creamy, coffee flavored dessert--a liquid donut, if you will…

Through the years following, I had stayed somewhat true to this sweet and light delicacy, while enjoying the caffeine (and sugar) rush, or high--however. Even when packed in a business conference room during my working years … I was always amazed at how people could actually drink coffee--black … What, no added creaminess or sweetness? It was usually on my mind next to eyeing the trays of freshly made gourmet sandwiches and other tasty desserts that accompanied our meetings. A nice distraction from listening to the world of investments: stocks, bonds and mutual funds …. ah, how boring; I don’t even know how I ever survived those years!! Thank the world for coffee!

It was also here that I was told that I wasn’t a true coffee drinker. Even though I "needed” the coffee in the morning and “enjoyed” it during my day to keep me moving and alert--just like them--the real coffee drinkers? I was told that I was a fraud; a fraud coffeeholic. Huh??? I wasn’t sure if I actually agreed with this mentality. I mean coffee drinking is coffee drinking, is it not? It starts off steaming hot and black, but so what if one adds in a hint of cream, or takes it with milk; mixes in some sugar; chooses it au lait, espresso, latte; or goes for the gold and adds in a shot of Bailey’s, oh, yum! --but, no matter--if you like or need coffee, then you are a true coffee drinker; a connoisseur; a dreamer of Juan Valdez dancing in your head … oh, well maybe that last one is going a bit too far!!

So now that coffee--and all of its funny nicknames: java--cup-o-joe, has so intrigued, seduced and captured my son with its bold, eye-wakening aroma; and who (from my observations) now wears the glowing, caffeine-induced “perky” smile; and has made this new leap--inching further into adulthood-- as the newest member of our zombie-like, ever-so-worshiping-our morning- drug world and its rituals. What else can I possibly say but--welcome, welcome to a new dawn, son… Welcome to the druggies’ world. There’s no turning back now …

Sigh.

Learn some fun coffee facts here and more here.

My Other A-Word

2009-02-20T09:19:00.010-05:00

Two older Irish gentlemen came to the door. No, this is not some silly joke, it’s real and they were spreading the word of God. The only difference between these two fellas and some, um, other … ahhh, more “eccentric” looking guy that one might have expected to come to the door--and one in which I would’ve had to quickly fake malaria--um, the contagious kind--and would be forced to shut the door, immediately… Or I might have used the old standby: Ah, my kids are running with knives, so I really gotta goooo…

No. Instead, these guys were the kind who looked like your average grandpa. Or better yet, two fellas you would definitely sit down with and chug back a beer--or two. A nice Irish brew, perhaps.

But as someone who can’t seem to shut the hell up: call me fearless; call me looking for trouble; or perhaps just someone who likes to antagonize when prompted--who knows--but I kindly said three words to them that were honest and honestly looking to end all discussion.

I’m an atheist. (Or is that four words?)

Oooh, I couldn’t believe I said it either… and how easily it seemed to spring from my (big, fat) mouth. I mean one just doesn’t go around saying such things in good company. It’s just …well… so unacceptable.

It was on my mind and on the tip of my tongue, but my better, less mouthy side told me to hold back, don’t go there… don’t do it--they’re such nice fellas.

But then again, perhaps that’s why I said it.

Both men reacted to the a-word. The first man closest to my door shifted back on his other foot to get a better look at, um, well--atheism. And the other fella looked like he finally woke up.

Geez. All that these guys were trying to do was pass along a few pamphlets and say a few nice words, that’s all.

Now I wasn’t trying to antagonize them; the word just demonstrated who I was and what I believed… as we all are different. Perhaps I thought I could open up to these nice looking Irish grandpas. I mean, my grandpa has long since passed, and perhaps I wanted to share my thoughts--that is, exhibiting my nice, wistful side. Or perhaps it was the knowledge that few people would disagree or turn away the all–knowing, wiser, friendly face of the lucky Irish, so nice marketing--oh, my evil side.

So these fellas were not shocked or “scared” by my otherwise free spirited candor. Nor did they feel mistreated by the revelation. Instead they interviewed me and asked me if I was always “this way…”

I said yes. And I continued with the fact that I thought spirituality was a good thing for the right person. And I certainly encourage it for those who choose to seek it. I’m just not one who does and never have been.

The other fella, the one who I apparently just woke up, asked me if I grew up with religion. And I told him I did. As a matter of fact, I attended Catholic church every Sunday with my family; graduated from Sunday school at 18; and I got married in a Catholic church, too, oh my.

“So you don’t believe in a higher being”
“No, I really don’t." And I sloppily continued with, "I’m more of a concrete thinker." (Oh, forgive me if that sounds arrogant.)
The guy standing closest to me came in even closer, so close that he almost touched my nose and said in a most Irish accent: "If it’s not here and tangible, while knocking on my aluminum siding (not the effect that I think he was going for), then you don’t believe, eh?"

I said yes. I supported my thoughts with the fact that I don’t believe that after this life we go on to another…

And then the most shocking thing came from my mouth, next to speaking the words of my childhood devil “atheist.”

Well I also have two autistic children. Now isn’t that interesting? Why did I feel the need to say that? Was I just trying to demonstrate my personal beliefs?--and let’s face it, there are other atheists in the world, not just me--or was I trying to say if there was a God, then why would He have screwed me and my kids? Why would autism and other special needs exist if it proved to be a challenging life or a life of suffering? Or maybe since I never believed in Him then he doesn’t believe in me and handed me a much tougher life--so there.

How convoluted is that… No, I’m not a psycho, it’s just the product of a crazy mix of being raised forced to believe in something and someone that I just don’t--so, of course, I would sound conflicting. And nature vs. nurture theory would prove that I’m an atheist by nature. It’s just the way I think; the here and now.

But it was an interesting visit to say the least; almost blaming someone I don’t believe in for my problems …

One of the gentlemen smiled with his face still up close to mine and gave me two pamphlets and asked me to read an article--if I would--of interest to me, perhaps; and then kindly asked if he could come back and visit again--in the spring--to check in on me.

Nice fella.

Probably thinking that I’m some kind of mental case.

When they left I quickly looked at the article that he left open, it was an article with a beautiful sunset and captioned: How to make the world a better place, through kindness and love.

I smiled.

Then a few moments later as I was pulling out of the driveway I noticed an advertisement stuck on my mailbox that I had to tilt my head and squint my eyes to read: If you’ve got a problem, then let me fix it.

Ohhh. I wonder who left that one?

Ringling Bros. and Mom Central deal and giveaway

2009-02-19T09:48:00.007-05:00

Love the circus? I do and the Ringling Bros. is not to be missed if you haven't yet been. Both my kids have enjoyed this show in the past, so I thought I'd pass this great deal along to all of you!! Read on from Stacy DeBroff of Mom Central.

Last year, Mom Central and Ringling Bros. and Barnum & Bailey® teamed up to provide families across the country with a special opportunity to experience The Greatest Show On Earth®. Our national survey found that 88% of Moms regarded Ringling Bros.® as a "not to be missed" childhood experience, and, from the enthusiastic feedback we received, we want to provide you with another special opportunity to see one of the three incredible, entirely different Ringling Bros. productions with your family.

The Mom Central team recently had the pleasure of checking out the newest production from Ringling Bros. and Barnum & Bailey in Orlando, FL, and we were blown away by the energy, music, dancing and really outstanding illusions found in ZING ZANG ZOOM. The show features magical Zingmaster Alex Ramon, who had us gasping in disbelief at the grand illusions that he performed, and is an amazing interactive family experience merged with traditional circus acts that were remarkable. It brought back the magic of the circus from our own childhoods and reminded us of the importance of passing down the lifetime memory and tradition of experiencing Ringling Bros. as a family to our children.

With the economy posing a challenge for many families, the value of a night out at Ringling Bros. is high, as the experience includes the All Access Pre-show, a fun opportunity to meet circus performers and dress up in clown costumes, which happens one hour before each performance.
We are excited to extend the following special family offers:

Offer #1: Get 4 tickets for just $44 by entering the code "MOM" at select ticketing channels**. Offer good on all performances, minimum purchase of 4 tickets required; additional tickets above 4 can be purchased at $11 each. Offer not valid on Circus Celebrity Seating, Front Row and VIP seating or combinable with other offers. Other Restrictions May Apply.

Offer #2: A select amount of Front Row and VIP seats have been reserved for you to buy before they go on sale to the public - just enter the code "MOM" when purchasing those seats. Dates and cities where families can use the national MOM discount code this spring are as follows:

Newark/East Rutherford/Uniondale/NYC Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM March 5 - April 13 Offer not valid on performances from April 10 - 13 at Madison Square Garden
Washington D.C./ Fairfax, VA/ Baltimore, MD Ringling Bros. and Barnum & Bailey® proudly presents Over The Top March 18-April 19
Philadelphia Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM May 13-May 25
Phoenix Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM June 24-June 28
Houston Ringling Bros. and Barnum & Bailey® proudly presents Over The Top July 15-July 26
Anaheim/LA/Ontario Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM July 8-August 2
San Francisco Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM August 12-August 23
Dallas/Ft Worth Ringling Bros. and Barnum & Bailey® proudly presents Over The Top July 29-August 16
Sacramento Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM August 27-August 30
Kansas City Ringling Bros. and Barnum & Bailey® proudly presents Over The Top September 16-September 20

To learn more about the three Ringling Bros. and Barnum & Bailey shows touring the country this year visit http://www.ringling.com/, and visit http://www.ticketmaster.com/ to use the 4 tickets for $44 code, MOM. We are also giving away a four pack of tickets to each of the above Ringling shows. If you live in one of these areas, you can enter to win here. Good luck!!

*Please note that these offers are also valid for Disney On Ice shows in select cities - visit http://www.disneyonice.com/ to find a show near you.

IF YOU WOULD LIKE MORE INFO. ABOUT DISNEY ON ICE --SAME DEAL-- LET ME KNOW IN THE COMMENTS OR EMAIL ME AND I WILL EMAIL YOU THE CITIES AND INFO...

Ringling Bros. and Mom Central Circus Deal and Giveaway

2009-02-19T09:14:00.007-05:00

Love the circus? I do and the Ringling Bros. in not to be missed if you haven't yet been. Both my kids have enjoyed this show in the past so I thought I'd pass this great deal along to all of you!! Read on from Stacey DeBroff at Mom Central:

We are excited to extend the following special family offers:

· Offer #1: Get 4 tickets for just $44 by entering the code "MOM" at select ticketing channels**. Offer good on all performances, minimum purchase of 4 tickets required; additional tickets above 4 can be purchased at $11 each. Offer not valid on Circus Celebrity Seating, Front Row and VIP seating or combinable with other offers. Other Restrictions May Apply.·

Newark/East Rutherford/Uniondale/NYC Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM March 5 - April 13 Offer not valid on performances from April 10 - 13 at Madison Square Garden

Washington D.C./ Fairfax, VA/ Baltimore, MDRingling Bros. and Barnum & Bailey® proudly presents Over The Top March 18-April 19
Philadelphia Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOMMay 13-May 25
PhoenixRingling Bros. and Barnum & Bailey® presents ZING ZANG ZOOMJune 24-June 28
HoustonRingling Bros. and Barnum & Bailey® proudly presents Over The Top July 15-July 26 Anaheim/LA/OntarioRingling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM July 8-August 2
San Francisco Ringling Bros. and Barnum & Bailey® presents ZING ZANG ZOOM August 12-August 23
Dallas/Ft WorthRingling Bros. and Barnum & Bailey® proudly presents Over The TopJuly 29-August 16
SacramentoRingling Bros. and Barnum & Bailey® presents ZING ZANG ZOOMAugust 27-August 30
Kansas CityRingling Bros. and Barnum & Bailey® proudly presents Over The TopSeptember 16-September 20

FOR MORE INFORMATION ABOUT THE DISNEY ON ICE AND CITIES, LET ME KNOW AND I WILL EMAIL YOU THE INFORMATION... and SAME DEAL.

Engaging Autism, now in paperback

2009-02-18T11:09:00.009-05:00

From: Lindsey Triebel, Marketing Manager, Da Capo Lifelong Books http://www.dacapopress.com/:

I’m writing to let you know about the paperback release of Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley I. Greenspan, M.D. and Serena Wieder, PH.D.

Engaging Autism is an invaluable guide to the highly recommended Floortime approach for treating children with any type of autism spectrum disorder from the earliest signs in infancy through the school years and beyond. Now available in paperback, it includes new, exciting information on neuroscience research, plus guidance for parents navigating the controversies surrounding the treatment of autism.

Praise for Engaging Autism: “This is a valuable book: valuable to parents who worry about their child, valuable to professionals who are consulted, valuable to the teams (parents and professionals) who are looking for interventions for this frightening disorder. Floortime and the DIR programs are exciting innovations and dramatically effective.”

—T. Berry Brazelton, M.D., Clinical Professor of Pediatrics. Emeritus, Harvard Medical School

For further information about the book and its authors, please visit: dacapopress.com

I have not read this book as of yet, but I have read The Child with Special Needs, by Greenspan and Wieder, many, many years ago. It was one of the first books that we'd read at the start of our journey with autism ... I used the well known Floortime approach which I thought was very helpful, effective and a good start at learning and interacting with my children.

Lisa Jo Rudy, About.com: Autism read the book and shared her thoughts here, including the pros and cons and a description of the book.

Have you read this book, what are your thoughts?

Socially Unacceptable

2009-02-17T15:39:00.010-05:00

I was at the comic store with Nick, again, and we had a bit of a social opportunity… but then again, not so much. Nick was trying to look at comic books, as he always does when we’re at the mall, and the guy who worked there was straightening the comics and making sure that all was perfect. Nick was hovering and avoiding as he usually does when someone is in his, um, “space.” Nick wanted to look at the section that the guy was straightening (but not really needed much since the area looked great as it was). The guy spotted Nick and said “How ya doing buddy, everything good?” It was a nice way of saying how ya doing dontcha just love comics??? And, as always, I’m someone there, too; located just off center stage, set back to the side but safely in Nick's “protective” eye view and ear shot… “Not too far away, Mom,” Nick might say. So when this guy said that to him, Nick responded in his typical way… he turned away from the guy as if he wanted to forget that the guy was trying to talk to him.

Ughhhhhh!! Two years of social skills class and this is still what’s going on… I want my money back!!

So there I was (as usual) to speak up for Nick and say, “Yup everything is fine.” Now go away so I don’t have to stand here all day, buddy!!! The guy looked at me in a strange sort of way and nods. I understood this strange look all too well. It was pretty much equal to: What’s this almost 15 year old kid doing hanging around with his mom; and, furthermore, what’s the mom doing answering questions for him … hey, cut the cord already, lady!!

I know, I know. I’m asking myself the same question. It’s the same question I ask myself whenever we’re at the mall, the supermarket, Target, and Nick still needs me in his range of sight--no more than 10 feet away. And, needless to say, he is still so far from being able to stay home by himself, even for a few minutes. He’s just not there yet in his development. Simple as that.

I’m trying to question if this is an immaturity? His disorder? Or am I hanging on too tight and need to “cut the cord” already and force him to be out of my sight view for a few minutes at a time to exercise this developmental step. Or should I wait until he tells me that he’s ready and not force it? Trust me, I've tried to force it but he doesn't like it and I'm always afraid that he might panic.

And back at the comic store was a comical sight to take in: the guy was spending much of his time hovering around Nick and the comics section straightening bookshelves that were already perfect; meanwhile just a mere 15 feet, or so, away was this appalling sight.

Or perhaps I just have a case of OCD? Or perhaps I’m just getting back at the guy who made me feel like a bad mum…

No Bias, No Bull: Plea for Vaccinations

2009-02-13T07:50:00.005-05:00

CNN’s Campbell Brown is never afraid to speak her mind and last night was no different. After reporting the newest (3 case study) findings that the MMR vaccine and vaccines containing the mercury based preservative does not cause autism. More on those findings here.

She made her own personal plea in light of the news that she is expecting her second baby and that she does not question that vaccines are safe. She also wanted the public to be aware that in 2008 the U.S. had the highest rate of measles in 10 years due to parents choosing not to vaccinate their children.

She continued with “Major medical groups and government research are
unanimous: the measles vaccine is safe, and you must get your children
vaccinated; because if you don't, you are endangering my children. You are
endangering your neighbor's children. You are endangering all of our
children.”

“Let's all move on together and focus on finding the real cause of
autism and at the same time protect all of our children from deadly diseases
like measles that we know how to prevent.”

As these new findings were reported yesterday, Autism Speaks and The Autism Society of America, two of the largest autism advocacy organizations, asked for more research into the “causes” of autism.

As always, your thoughts on these new findings?

CNN News links here: http://edition.cnn.com/2009/HEALTH/02/12/campbell.brown.vaccine/#cnnSTCText

http://edition.cnn.com/2009/HEALTH/02/12/autism.vaccines/index.html#cnnSTCText

Rett Syndrome and Girl Power 2 Cure...

2009-02-12T07:21:00.006-05:00

I received an email from a great group of "Fearless Females " over at Girl Power 2 Cure. It's a non profit organization dedicated to curing Rett Syndrome ... Read more from Kelly Butler, Program Director and a daughter who has Rett Syndrome, and check out their website:

I consider myself a fearless female as I raise my special needs daughter who has Rett Syndrome (most debilitating form of Autism that only affects girls) I thought about your blog and how it goes well with the non profit I work with Girl Power 2 Cure all of our girls fighting each day with Rett Syndrome are for sure Fearless Females too - we would love it if you would link to our site and honor our "Fearless Females!!"

http://www.girlpower2cure.org/

The “label” thing

2009-02-10T08:27:00.005-05:00

Autistics, Aspies, Special Needs, a Disorder, my Daughter, my Son, Other:

What do you label your child? Or better yet, what does your special needs child (or adult) prefer to be tagged with?

This is not a hostile post, but I’ve noticed that people call their child (or themselves) with at least one of the aforementioned tags. And it’s interesting to note.

Personally, I’ve never liked hearing the “autistics” and “aspie” label, it has always rubbed me the wrong way--not sure why, but it just does, but I’m not a person with autism or asperger’s. However, I have read recently through another blog that a few people with Asperger’s syndrome do not like to be called aspies--someone actually said that, for them, it was like being called the “R” word. Interesting.

I’ve mentioned before that I don’t like labels and I have not labeled Nick with autism. That is, he does not know that he is on the autism spectrum--like his sister. He does not know what PDD is, nor does he know about MR or even that “R” is used in a derogatory manner--by horrible people. I know this because he has never come home and asked what the R-word means, but he has come home and asked me what: dork, butt head, idiot, nerd …all mean … No, I don’t like it either, but he hears it and wants more input. And it was lesson one in labels.

He knows his sister has “autism” because she is on the severe end of the spectrum and we use the label as a mere explanation for why she cannot talk and has behavioral issues. And why she had to go to a residential school.

Nick doesn’t question labels for himself. He just knows that he has an aide in school because he needs the “special help” and he wants the help, for now. But I am thinking that this may change for him. He might want a further explanation for the “special help” -- someday. Or perhaps some “bully” might offer him an explanation for him and open his eyes further into the world of labels.

I do know that my brother wanted an explanation for his “disorder” because of a childhood troubled by bullies. But he never got this conclusive label until he was an adult. He pursued it and was tagged with ADHD. And to me -- his sister, and someone who understand disorders -- I was relieved for him; I was relieved that he had the "diagnosis." It provided him with the explanation for his behavioral problems growing up -- the remedy; the “why” he was so different from the other kids; the mystery solved. It was a revelation for him and a diagnosis that happens to come with its own label -- like a present. Or is it?

I suppose it’s up to him if he wants to use the "label thing" -- it’s his label. I guess the choices are that he could ignore it and continue on with life with satisfaction that he understands more about himself and his DNA, or he could use it and tell the judging world that he has a disorder so give a little won’t ya…

To note, he has always used the I have “special needs” tag before he was diagnosed and sometimes I believed he used it as an excuse for fearing the world or not getting what he wants. And, as of late, I’ve often wondered if he’d switched to the I have “ADHD” tag to let the world know that he’s now "officially" at some kind of a disadvantage than his competing peer. Or perhaps he’s learned that a “label” really doesn’t get him very far.

I don’t know.

When the common cold causes common problems

2009-02-06T09:33:00.006-05:00

Meghan has a common cold, therefore she is experiencing SIB (self injurious behavior) and assaultive behavior – not uncommon for Meghan and not uncommon for a lot of kids with autism. As some may know from your own autistic children, SIBs are hand biting, hair pulling, and some kids are even prone to head banging. Meghan has never done the latter, but hand biting is very common for her; so common that she sports a dry skin rash on her hand – a consequential blemish and a sign of a repetitive SIB problem.

As her mother it is never easy to hear that she has exhibited these behaviors, and, unfortunately, it seems just about every other week I’m told by her school contact teacher that she has exhibited SIBs – a solemn but true fact of life with Meghan.

It’s common sense to write down what triggered the behaviors in the first place, but sometimes I’m told it’s a mystery. Yeah, right? … uh, not really. As her mom -- and the only person who knows her so well -- I know that her hand biting is obviously due to a sign of frustration (well that’s evident to all), but with a few other imperceptible facts I can usually pinpoint what caused the outburst in the first place, such as: she is not getting what she wants (the stubborn girl); she is not completely understood (the frustrated girl); she wants her dinner and NOW (the very hungry girl); or she is not feeling well: fighting a cold or other (the poor sick girl).

What do these facts really do for me other than help me feel less helpless? Yeah, that’s what it comes down to. She can’t get away with these behaviors no matter what prompted them, but I feel as though I owe it to her to at least understand “why” she exhibits SIB and destructive behavior, and yesterday was no different. I had to hold my breath because I received two calls from her school (did you get that — two): one was her scheduled call from her teacher to tell me that she had some SIB, and the other was from the nurse. Yikes, the nurse call is never a good sign! I was told that she bit a teacher and drew blood. Ouch. Ouch to the fact that biting someone else hasn’t happened in over six months, and the first incident at her new school.

And now that you know that I feel helpless -- as one would in this situation -- what does a helpless parent do with this kind of information? Apologize? Certainly not. Actually, one of the very first and very wise comments made years ago by one of her teachers was: “You should never feel as though you have to apologize for your autistic child.” How true is that? And she was right, so I don’t -- and nor should you. Instead, I ask what lead to the problem to get to the “why”; the inexcusable, but explainable “why.”

As for yesterday I already knew that Meghan wasn’t feeling well -- and to me -- that only means that she’s nothing more than a ticking time bomb and I must wait patiently for these inevitable calls -- and without apology.

Don’t get me wrong; these are also the days that I feel bad for her teachers: the underpaid, sacrificial heroes that never let-up or run and hide (um, like I would – like anyone would when an enraged person is ready to strike), but, instead, they are unwavering in their approach and dedication to working with Meghan and not letting her autism get the better of her. Now that is a hero to Meghan and to the people who love her.

And I feel bad for me, too (yeah, I thought I’d throw that in), ‘cause she’s coming home today -- noontime to be exact. So if you’re the praying kind, then "pray." Pray for the weak, the vulnerable, the “prey” who is up against a nonverbal autistic girl and a very bad cold.

And her menstrual cycle.

Feb. Vacation Events: Franklin Park Zoo, Stone Zoo, Easton Children's Museum

2009-02-05T09:00:00.012-05:00

February Vacation "Hot Stops" with the Kids… in Massachusetts
Things to do and places to visit if you’ve got kids—"all kids"—this February vacation:

1st Stop, Franklin Park Zoo, Boston, MA:

Help Little Joe Celebrate His 16th Birthday During February School Vacation Week
Franklin Park Zoo Plans Special Activities for “Go Ape Week”

Set off on a tropical excursion during February school vacation week - bring your family to Franklin Park Zoo for an ape-themed getaway! Little Joe turns 16, so Franklin Park Zoo will celebrate his birthday all week! Activities include:

~First 25 visitors per day receive a special gift
~Sign a large birthday card for Little Joe
~Enjoy gorilla-shaped birthday cake (on Monday, February 16)
~Opportunity to participate in a variety of creative and educational ape-related activities
~And, many other surprises throughout the week!

February 16 – 20 11AM – 3PM (Go Ape Week activities happening every day!) Monday, February 16 11AM; Enjoy complimentary “gorilla” birthday cake by Montilio’s Baking Company

Events are free with regular paid admission Franklin Park Zoo Admission: $12.00 for adults; $7.00 for children 2-12; children under 2 are free.

Tropical Forest, Franklin Park Zoo , One Franklin Park Road, Boston, MA FOR ADDITIONAL INFORMATION: 617-541-LION or visit http://www.franklinparkzoo.org/

2nd Stop, Stone Zoo, Stoneham, MA:

Come Play the Animal Way! From: Stacey Goldsmith-Nathanson

February 16 – 20, 11:00 a.m. – 3:00 p.m. Stone Zoo

Beat the humdrum winter routine and come out to Stone Zoo during February school vacation week. Watch wolves, coyotes and others have fun in the cold, and learn about neat animal adaptations to the winter temperatures. Just like you, animals can get bored when they’re cooped up all winter, so we have come up with some neat enrichment activities to keep them happy! Come and see all the creative things we do for our critters, and learn how we keep them active and playing throughout the winter using enrichment techniques.

Please contact Brianne for any questions: 617-375-9700
Stone Zone Website

3rd Stop, The Easton Children's Museum, Easton, MA:

If you're interested in more fun activities over February Vacation, The Easton Children's Museum runs a February Vacation week program, this year themed as Ruff Ruffman's Operation espionage! We'll be searching for Ruff's squeaky toy, which has gone missing. Come check us out!

If you haven't been to this museum, I highly recommend it!!

http://www.childrensmuseumineaston.org/Home.asp

Therapy is great!

2009-02-04T09:41:00.009-05:00

There, I’ve said it and now I can stop and make this the shortest post in history, but I won’t. I will blab away and tell you why I say what I do, and do what I say … and what inspired this post.

Like you, I like to read many blogs and most of them are located on my blogroll where you will find the Brazen Careerist blog. The reason why I like her blog is why a lot of people like it -- the human and self interest side -- the personal stuff. Her blog is meant to help those in business to learn and grow using her successful ideas and suggestions -- all good. However, she also blogs about her personal life, some stuff so humorously shocking (for a business blog) that I continue to read -- as do most people who like to read the juicy stuff now and then (and don't pretend that that's not you, too). Btw, she mentioned that she thinks she might have Asperger’s syndrome (perhaps in a more tongue in cheek manner), but her young son was diagnosed with the disorder.

One of her posts was one of which my eyes did a double take and I smiled. "How to decide if you need to see a therapist” is the title. I loved seeing it even before I read it, because I'm one of those people who believe in the power and the rewards of a good therapist, and I am emphasizing the word: “good.”

Do run from the bad therapists and search for a good one. And you will know when you have found each of the two: A bad therapist will make you feel stupid, boring and undeserving (yeah, that happened to me). And a good therapist will know why you're there in the first place.

A lot of people believe that seeing a therapist is a sign of weakness, of shame. But that attitude is the actual weakness if you ask me. To have enough love for yourself, the desire to know yourself better, and the courage to be the best person, parent, husband/wife that you can be, is what seeing a therapist is all about.

I’ve told you before that Nick and I see a therapist together because he is on Luvox for his anxiety and OCD, and the one-hour long, one day a month appointment with B (our therapist) is actually required. At first I thought, ugh, a whole hour spent with someone because we are "forced" to and that Nick talks incessantly about only two topics: how nervous he is in school and about superheroes.

Come to realize soon after, it was a blessing. Hint: she’s a good therapist; someone who will let you know what she thinks without holding back -- is a very good thing, and the fact that she’s very aware of Nick behaviors and of autism spectrum disorders is everything for us -- almost like a substitute parent for an hour -- while I suck down my latte and enjoy the view…

Then one day I just opened up and divulged my true feeling about everything that I was dealing with in my life (I'd found the courage) and it was like a huge weight was lifted from my shoulders -- because that was where all my problems and the problems of my kids were resting. It was a moment of clarity and certainty; a moment that I was able to see more clearly the kind of person and mother that I was to Nick, and to Meghan, for that matter. She also gave me confirmation and validation about my feelings and about my heart-wrenching decision of residential placement for Meghan -- and the educated opinion of someone who understands and who has been there.

Friends are also good people to talk to about your problems -- and expected, but sometimes friends can’t tell you what they really think in fear of hurting your feeling, nor do you really want to burden them with heavy problems and major decisions.

In therapy sometimes B and I just gab away … she gabs about her interesting family and of growing up with a father who she believed had Asperger’s syndrome, and I gab about my personal and family problems, issues, concerns -- of course! We talk. We laugh. We drink lattes -- until Nick interrupts to say: “EXCUSE ME, is it my turn yet!!?”

Ahhh, we love therapy!!

My two faces of autism

2009-01-30T11:15:00.009-05:00

There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children--everyday, and want to open up to the world to show how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they’re burdened with. These parents want to offer their voice to speak in support of autism--the fight for its existence, acceptance and its sustainability.

I understand this attitude and this activism. And, personally, I do embrace autism and all of its pretty colors--to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great--just like you believe that your child is great. So, I’m here to say that I’m standing right there beside you--like-minded parents who want to promote autism as a positive and stop judging it as a negative for the sake of our high functioning autistic kids and their place in the world.

So, I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our heart and the hearts of others who have the privilege and open-mindedness to know and embrace them.

However, I also represent, respect, and understand the other side of autism that we call hell -- for those of you who understand what hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it’s often hidden from the world. It’s a sadder, scarier, exhausting and, frankly, horrific side to this disorder that you know as severe or low functioning. It’s a perplexity that I’m still trying to wrap my brain around and understand, even after 13 years. It’s autism at its worst and I’m not choosing to celebrate it. Not a chance. It’s a side that few people actually get to know, understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It’s autism at is worst--an evil, hell, devastating, and heartbreaking. And don’t tell me to stop and look on the bright side or be positive, because there is no brighter side to this side of autism--trust me, I’ve spent time looking, begging and pleading that there would be a brighter side--at some point, someday; because how can a parent allow herself to feel this way?

A severely autistic child, like Meghan, is not a child like Nick with higher functioning autism and one you can mainstream into classrooms, and show off in public places without worry or incident. She is not a child that you can trust to play in the yard without running off, to trust with a toy without breaking it, or to trust to use the bathroom without playing with her feces—even at 13. She is not a child who you can talk to and have a conversation with or to get to know her precious little thoughts and secrets. After 13 years I still don’t know what Meghan’s favorite color is because she doesn’t understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me--her mother--or to even speak those precious few words that we all wish to hear: "I love you Mommy," or even "Mommy" would suffice; I’m still waiting, I’m still waiting to hear her voice. It’s autism at its worst and I know it just as well as I know autism at its best.

Harsh? Maybe, but it’s true. But I also want to say that it’s okay, too. It’s okay to feel this way. It's okay not to pretend that everything is okay when it’s not. To allow yourself those fleeting moments to feel hostility instead of happiness; to feel dread instead of hope; to want to condemn autism instead of celebrating it, because it’s real, and it’s raw and it's hard. And it’s hidden from the world because, frankly, people want to see the hopeful side of autism--the prettier side--the acceptable side--the side that we want to show off, celebrate and promote with all our hearts, because it makes us feel better.

Miles for Miracles…Boston Marathon Run

2009-01-28T10:04:00.006-05:00

Please help sponsor a friend running in the Boston Marathon… You know the “run,” the arduous, 26-mile trek from Hopkinton to Boston….Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life. So far she has raised almost $2,000 and needs your help... so spread the word..

Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

https://howtohelp.childrenshospital.org/bostonmarathon09/pfp/?ProfileID=CC0103

Read more about the Autism Language Program:

http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html

Good luck, Christine… you are an inspiration!!

Miles for Miracles…Running for Autism…

2009-01-28T09:56:00.002-05:00

Please help sponsor a friend running in the Boston Marathon… Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life. So far she has raised 2,000 and needs your help... Spread the word.

Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

https://howtohelp.childrenshospital.org/bostonmarathon09/pfp/?ProfileID=CC0103

Read more about the autism language program:

http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html

Good luck, Christine… you are an inspiration!!

My son gets all As and Bs, but he won’t graduate from high school

2009-01-27T09:26:00.009-05:00

Every quarter Nick and I are invited to a special “Honor’s Breakfast,” a breakfast hosted by the school in honor of the kids who make the honor roll.

My son has made the honor roll every single quarter since he started middle school--two years ago--because he gets As and Bs on his report card--and he’s in a special needs class.

A Special. Needs. Class. Don’t get me wrong, I’m always proud of him, and, lately, I’m proud of the fact that he has taken an interest in reading his own report card and noting the good grades and the few comments some of his teachers have written about him in the special comments section.

I’m glad that he does well in school and that he knows it, too. But my problem is this:

Since he’s in special needs and that he does not follow the typical curriculum, but, instead, a modified curriculum designed for him and for his needs--then what is the actual measure used in grading him?

I already know the answer to this question. There’s no measure. He is not at the top of his class because he is not competing with his class; he's receiving good grades for simply doing the work given to him and learning the information at his own pace. He receives a good grade for simply moving forward and, well, learning.

And of course I’m very proud of him for this and for his quarterly achievements--even if it’s not based on the same academic performance and measure of his typical peers… And I will always be proud of him for whatever he works hard for and achieves; I tell him this all the time, because I know it matters.

But what I do worry about is that even though he’s doing well and receiving good grades based on this modified criteria, he will not meet the requirements to graduate from high school. That is: he will not wear a cap and gown and walk to the football field or march through the gymnasium to partake in the ultimate celebration of his life--and receive his diploma--the very same diploma that demonstrates his years of hard work and achievements. In other words: he can attend quarterly honor breakfasts and chew down some donuts, cupcakes and bagels, but he won’t be attending a graduation--or a “congraduation,” as he calls it.

Ironic, isn’t it?

The biggest problem is that he knows all about this “congraduation” and that one wears a cap and gown on their “big day”; a day that I believe he’s looking forward to just as much as he’s looking forward to finally leaving school, but I don’t have the heart to ask. It’s actually funny because I joined Facebook about a month or two ago and one of my classmates from high school found an old picture of our high school graduation ceremony. It was funny to see, but not all that fun for me, because I know that my son will not have one of his own to look back on, some twenty five years later, or to simply remember the day fondly.

And I would love to show him this picture because I know how tickled pink he would be to see an old school photo of me, especially at my high school graduation ceremony and all decked out in my cap and gown …for my congraduation…

But I can’t bring myself to show him the picture.

Btw: I'm third in from the left, front row.

Lack of common sense or lack of interest? About 8 year old autistic girl arrest

2009-01-24T11:30:00.008-05:00

I’m sorry but have you seen Common Sense? I can’t seem to find it out there and frankly it has me scared to death for my autistic children.

I could so easily be talking about a lot of the headline news; sometimes it’s just enough for me to suck down my morning coffee without chocking on the latest heartbreaking news. But, today, I’m primarily focusing on the backlash of last week's story of the 8-year-old girl with Asperger syndrome (AS) who was arrested and sent off to be charged with battery (later dropped).

Children with AS usually do not have intellectual disabilities and, therefore, are more easily mainstreamed into typical classroom (sometimes not so easily) -- and sometimes require an aide for classroom support and behavior modification. Apparently, the teacher in this little girl's school didn’t understand autism and some of the behaviors associated with the disorder (or at least didn’t appear to) and, in this case, the child may have exhibited sensory issues: the child wanted to wear her hoodie (hooded sweatshirt) which was also a cow outfit and the teacher wanted her to remove it and the child became behavioral and started hitting the teacher. Now I don’t like hearing about this sort of situation anymore than anyone else who has autistic kids--because--for some of us--it really does hit home and it’s upsetting and scary as hell. But as I was looking further into the opinions (commenters) of the story, I noticed that “some” people believe that the teachers had no choice in the matter, as in saying--the teacher and school did the right thing, and then had some harsh words for the child.

Clearly some people don’t understand autism, but do you really have to understand autism to know that it wasn’t the right thing to do?

I was stunned that someone would even think that having the child arrested was actually an option -- but then again, the school officials and the teachers also thought that it was the “only option” or “right thing to do” or “protocol” or “by the book.” I don’t care how you say it. And to further stun those with actual common sense, the child was charged with battery -- an underage 8-year-old autistic child who weighs 50 pounds. And let’s not even start to identify the emotional trauma that she might have walked away with after, um, leaving jail…. So let’s recap: 8 year old who doesn’t completely understand the world around her was taken away in handcuffs by police officers (who also like to “work by the book”) and whisked away from the only people she knew and probably not knowing if she would ever see her mother again …

In this abc news article the child’s mother said:

"She started screaming 'Mommy, I don't want to go! What are batteries? What are
batteries?'" Towry said. "She didn't even know what she was arrested for."

And back to the fact that this child weighs, what -- just about 50 pounds -- could even be considered a threat to grown adults and would warrant such treatment.

A very interesting fact about an incident like this is that it has happened before....

I certainly understand that business and organizations have rules to follow; hell, one of the assignments that I had last year was to write a Policy and Procedure manual for a new business… so I am one who knows, understands and appreciates why there are rules to follow and procedures to carry out… but in this case?

And furthermore, rules are designed in black and white … there’s no grey area or when and where to follow good judgment and some good, old fashioned “common sense?”

Perhaps the use of common sense should be enforced, too.

Or perhaps it’s not about common sense but simply not wanting to deal with the child with special needs--an “undesirable” student? From the information that I found in Writeslaw website, (special needs advocates) this seems to be the schools way of thwarting their responsibilities of ‘dealing with kids with disabilities.” I’m not a lawyer, but if you are, please weigh in your thoughts.

Let me just say that if Nick was taken away in handcuffs because he yelled at the teacher or shoved someone because they made him mad (which could easily happen--his emotions have a way of getting ahead of him, and, since communication is lacking due to his "disorder"...) being arrested would ruin him (and for a mistake) and he would have a very hard time recovering from such a trauma ...

And you all know that Meghan has hit and shoved her teachers before, but the teachers and school officials know this as a behavioral issue due to her disability and lack of communication skills, they would never have called the police... Nonsense. Instead, we found her a new school with teachers and staff who are trained to handle her behaviors and help her... Not ruin her.

We want to help kids, not ruin them..

Feel free to share your own thoughts about this situation?

Here is the full story from ABC News

Kids' Update...

2009-01-23T09:04:00.006-05:00

As you might know I have not spoken of Meghan in a few weeks… that is because all is boring on that side of the great kid divide.

What I mean is: Meghan is doing wonderfully. Really. She has a good and consistent life (home and school) and she’s comfortable. At school she has a daily calendar of schoolwork (Which she loves—now how many kids love to do schoolwork?—she’s going to be a genius when she grows up!!) and then she has activities, special programs and she goes swimming twice a week. And when she goes to her “house” she does more (request) schoolwork, colors, and plays a game with one of her favorite friends…Oooh, did you hear that? She has a friend… It’s funny because when I receive a weekly call from Meghan’s assigned house teacher, she tells me that Meghan is the most social student (at least of the 8 girls at the house). It brought me back to when she was four (two year after her “severe end” autism diagnosis) and we were seeing a neurologist at the Ladder’s program in Mass. and the doctor said Meghan was special from the other (severe) autistic kids she knew because she said Meghan is “social.”

And it’s true, to a point. She is not what I would call a social butterfly; looking to entertain kids and people around the clock… but she has always been willing and able to acknowledge people and work for their attention— positive or negative, either one—she doesn’t care; she is not looking to please anyone but herself. If you think about it, isn’t that the way of a well-adjusted person? Looking to seek pleasure from others, but not willing to give a piece of yourself for the sake of others. It’s the attitude of a well-adjusted person, but not necessarily a person who would keep a lot of friends. Interesting, isn’t it?

On the other side of my kid divide is a boy who sits on the opposite end of the spectrum (high functioning) and could attract so many kids if he were…well…social. Just a little social; a small chapter from Meghan book is all that I would ask for; to balance his willingness to please with some social skills and an interest in other kids--of any kind, would be a great gift—for him. And maybe a little bit of healthy work ethic to go along with it, too. He hates school and work (unlike Meghan) and as of late, he told me that his aide gives him the answers to schoolwork—how about that for honesty!!? Ugh. And do I know this boy of mine—his handsome face, nice personality and cunning gets him everywhere!

Perhaps in time and if they hang out together when they’re grown adults--there’s hope, right?-- they would make the perfect dynamic duo (like Batman and Robin): with his ability to retain friends at a single bound, and her ability to attract them like no other…Wow, they would conquer the world and set out to new sites and actually leave the bat cave and live a life of solidarity and less solitude!!

Ahhh, a mom can only dream… and I’ve got comic books on my brain.

And at this very moment I am awaiting Meghan's return home for the weekend--loaded up with her favorite snack foods... and we will take in a day of sledding--her favorite! And I have a smile on my face... see

Happy Weekend to you too!!

What's Nose Hair, Mom???

2009-01-22T18:37:00.009-05:00

"What’s nose hair mom?”

Ugh!! Here we go again! I know how this conversation will develop… Let me just explain about Nick and hair-- if it’s not on his head, he doesn’t want it. He still stares at the one chest hair that he barely has and wants to shave it…and let’s not even mention his legs and, um, another place… so let’s take this ride together, shall we…? because you're coming along too... too bad, don't complain!!

“Everyone has nose hair, Nick, it’s normal.”

“But I have nose hair see…” (Nick demonstrates a finger and a turned up nose in my direction. If he wasn’t my son I would have to say Ewww, here….)

“Yes, you have nice nose hair, Nick!”

“I don’t have to cut it?”

“NO, see I have it too.”

“Only men who get really old have long nose hair?”

“Yes.” (If I were to guess, he is talking about his late great-grandfather who died over 5 years ago … and was 93 and had grey nose hair…and, apparently, "problematic" nose hair, too!)

“And they have to cut it?”

"Sometimes." (Oh, no, was that a concrete enough answer?? Try that again…) “Yes, they have to cut it if it gets long…” (I can’t believe I’m having this conversation…I will crack a beer now… You can crack a beer now, too, if you want, I won't blame you..)

“Why do we have nose hair?”

So we looked up all of the functions of --- nose hair --- (interesting! read here for your nose hair reading enjoyment, too!! It's only fair!!)

“Okay!”

What! Satisfied? Wow. No obsessing for hours about nose hair, or chest hair, or hair growing in odd and “all” places…. But I just cracked a beer and am ready!!
Oh wait, he’s coming back…

“Should I shave my legs like you do, Mom?”

“Absolutely NOT!”

“Only girls?"

“Yes, only women shave their legs…”

And he was off...
That was it. Nice and easy. And he’s satisfied…

But what's he shaving!!!??? Do YOU want to ask??

Go Ape during February Vacation Week, in Massachusetts

2009-01-22T17:42:00.005-05:00

Help Little Joe Celebrate His 16th Birthday During February School Vacation Week

Franklin Park Zoo Plans Special Activities for “Go Ape Week”

WHAT: Set off on a tropical excursion during February school vacation week - bring your family to Franklin Park Zoo for an ape-themed getaway! Little Joe turns 16, so Franklin Park Zoo will celebrate his birthday all week! Activities include:

First 25 visitors per day receive a special gift
Sign a large birthday card for Little Joe
Enjoy gorilla-shaped birthday cake (on Monday, February 16)
Opportunity to participate in a variety of creative and educational ape-related activities
And, many other surprises throughout the week! .

WHEN: February 16 – 20 11AM – 3PM (Go Ape Week activities happening every day!)

Monday, February 16 11AM; Enjoy complimentary “gorilla” birthday cake by Montilio’s Baking Company

TICKETS: Events are free with regular paid admission
Franklin Park Zoo Admission: $12.00 for adults; $7.00 for children 2-12; children under 2 are free.

WHERE: Tropical Forest, Franklin Park Zoo , One Franklin Park Road, Boston, MA
FOR ADDITIONAL INFORMATION: 617-541-LION or visit www.franklinparkzoo.org

Autism Insurance Reform, Note from Autism Speaks..

2009-01-22T16:48:00.003-05:00

Dear Massachusetts Autism Advocate:

Autism Speaks is pursuing autism insurance reform in over twenty states across the nation, including Massachusetts.

Last week, an autism insurance reform bill was introduced in the General Court of the Commonwealth of Massachusetts. The bill, sponsored by Representative Barbara A. L'Italien (D-42) and State Senator Frederick E. Berry (D-7), will require private healthcare policies to provide coverage of the diagnosis and treatment of autism spectrum disorders. The autism insurance reform bill will cover applied behavior analysis (ABA) and other medically necessary, evidence-based treatments prescribed by an insured's treating physician or psychologist. Autism Speaks is partnering with AFAM (Advocates for Autism in Massachusetts) to ensure passage of this crucial legislation.

There are currently eight states that have passed similar bills across the country, including five states during last year's legislative season: Arizona, Florida, Louisiana, Pennsylvania and Illinois. This legislation will position Massachusetts to be one of the next groundbreaking states that provides access to treatment for families dealing with the challenges of autism spectrum disorder.

Your help is needed to generate support for the autism insurance reform bill from your Massachusetts representative. Note that the deadline for co-sponsorship is February 4th, so please reach out to your state legislators now...

HOW CAN YOU HELP?

1. CALL YOUR STATE LEGISLATORS. Find out who represents you and their phone numbers here.

2. SEND AN EMAIL TO YOUR STATE LEGISLATORS. We encourage you to take the opportunity to personalize the e-mail before you click send. You can do so in the box below our letter.

3. STAY INFORMED Visit the Autism Votes website and sign up today to receive alerts and information pertaining to the autism insurance reform bill.

4. FORWARD THIS TO EVERYONE YOU KNOW A far-reaching grassroots effort will be crucial to the success of this legislation. Reach out to those who have asked how they can help by asking them to support this bill. They can show their support by by contacting their Massachusetts legislators and by registering for action alerts at www.autismvotes.org/.

For more information on the autism insurance reform initiative in Massachusetts, visit www.AutismVotes.org/Massachusetts.

Warm regards, Judith UrsittiRegional Director of State Advocacy Relations Autism Speaks

Social Group for Kids with High Functioning Autism on South Shore of Boston

2009-01-21T11:34:00.009-05:00

I am still looking to start a group for kids with Asperger's Syndrome or high functioning autism on the South Shore (south of Boston). I've noticed that there aren't many --or any, rather -- social groups in my area for Nick to enjoy.

As you may know, kids with autism have trouble making friends and being in social settings--and Nick is no exception. I'm not sure about your child, but Nick doesn't have many friends outside of school to do activities with or to meet up, so I thought that starting a group of friends (on the south shore) might be a great idea ...

Leave a comment or send me an email if you are on the south shore and have a child with high functioning autism, and are between the ages of 6th grade - high school (Nick's in 8th grade) and wish to do fun activities together (start a social group): go bowling, rock climbing, arcade, ice skate, ski ... etc..

***Update*** So far about 3 moms have emailed me, some are also interested in a mom's dinner night out!!

First Hundred Minutes...Let's hope not

2009-01-20T08:13:00.010-05:00

My son doesn’t understand satire. But that doesn’t hold him back from enjoying his MAD magazines. He loves it. He loves that they spoof a superhero or two throughout the magazine, and in almost every issue, too. Whenever he runs to the mailbox to get the mail, I know that he’s eagerly awaiting either a Netfilx movie or his MAD. And when he does get his monthly issue, he runs to me to show me what’s so funny this month.

I know it as satire and laugh at what I see; a totally different reason than why he laughs and what he sees. And this months edition was no different: It’s titled: “Ohama, The First 100 Minutes” and has three cigarettes hanging out of Obama’s mouth—just to say the least.

Of course Nick found it hilarious just the same--the cigarettes, that is. And not really understanding why Obama is parodied looking disheveled, sweating profusely, eyes bloodshot, aspirin and Pepto Bismol running amok -- “You know cigarettes are bad for you!!” he says of the scene. “And he has three in his mouth and two ashtrays full” laughing along amusingly. And, of course, the whole cartoon of Obama looking -- well -- just hilarious is enough to tickle his funny bone.

I do try to explain more of what is funny about the picture. The truth. The politics. But I think some things are better left for the adults who understand the complexities of the world—not for innocent boys like Nick. I do smile at his enjoyment and his delight of the magazine as a whole. And I do wonder, as he reads cover to cover, if he’s getting the message—if just a little bit. Perhaps in time and after a few hundred MAD magazines he might start connecting to the real world a little more, and losing that sweet innocence along the way. But no hurry!

To truly appreciate why Nick found the cover picture so amusing … read this older post of his obsession with cigarettes and smokers alike … It’s just as amusing!!

And let’s hope that President Obama’s first few minutes are better than illustrated….

Good Luck President Obama; Nick’s rooting for you!!

Getting older; getting wiser...

2009-01-18T11:25:00.006-05:00

Nick was at his usual obsessive "talks" of not wanting to grow up. It started off the same:

“My art teacher keeps saying that I'm tall; and said she can’t believe I’m in the 8th grade!”
“All teachers say that, Nick.”
“Yeah! You know I don’t want to grow up!!”
“I know.”
"And you KNOW I don’t want to go to high school!!"
“I know.”
“Why do the stupid teachers tell me that I’m big? I HATE that!!
“I know, but most teachers think that you like to hear that.”
"Well I don’t! (with a demonstrated fist in the air) I HATE THOSE STUPID TEACHERS, I'M GOING TO PUNCH THEM!”
“Nick, the teacher doesn’t know you don’t like to hear that; you’ll have to tell her next time, that’s all.”
“Yeah, well you know I don’t want to grow up and be older!”
“I know!”
“But it’s a good thing too?”
“Yes, it’s a very good thing…”
“I can do more things, like watch rated R movies?”
“Yup, older kids can watch whatever they want…”
“It’s boring to be little all the time?”
“It sure is; being older you can watch and do whatever you want…”
Big smile as he bounced out of the room and down the hall …

In case you didn’t catch the drift of what happened in our conversation, let me paraphrase: Nick introduced why he was mad; then his rage climaxed; then he gently talked himself out of it with the same content used to "settle the problem" in previous similar conversations… I had very little to do with it!! Remarkable!!

It’s getting easier now, and he’s memorizing and using points of conversations that help him feel better… I can just sit back and take the ride…YAHOO!! Or at least I could, this time. But it was wonderful to listen and note his progress!? No temper tantrum. No crazy talk. (Um, trust me, the previous outburst wasn't the worst!) He’s definitely growing up—physically and emotionally… And I’m so proud of him!

All I really have to say is Ahhh--my work here is done!! (well, kinda!!!)

And yeah, but… um… he will always be my little boy, Ubaboo, though! Right?? That’s U-ba-boo. It's love talk in native Mama, and it’s one of many, many nicknames that I have for him! And, Yes, just so you know--I do beat the record of "the most nicknames given to ones children," (if there is such a record) and I can prove it, too!! ;)

Come Play the Animal Way! Stone Zoo during Feb. Vacation

2009-01-16T07:45:00.005-05:00

Come Play the Animal Way! From: Stacey Goldsmith-Nathanson

February 16 – 20, 11:00 a.m. – 3:00 p.m. Stone Zoo

Beat the humdrum winter routine and come out to Stone Zoo during February school vacation week. Watch wolves, coyotes and others have fun in the cold, and learn about neat animal adaptations to the winter temperatures. Just like you, animals can get bored when they’re cooped up all winter, so we have come up with some neat enrichment activities to keep them happy! Come and see all the creative things we do for our critters, and learn how we keep them active and playing throughout the winter using enrichment techniques.

Please contact Brianne for any questions: 617-375-9700

Stone Zone Website

Comic Books for all ages?

2009-01-15T08:06:00.006-05:00

Ummm, maybe I was a little hasty about a point that I recently made in my last post about Nick outgrowing superheroes--entirely. Yesterday Nick asked me to take him to Newbury Comics, his new favorite store since he discovered that they have every comic book under the sun (and far out beating the bookstore). Not to mention tons and tons of superheroes figures, toys, memorabilia … you know Newbury Comics, right?

Well as Nick was looking over the comic books and choosing the one he wanted (Hellboy) since he still had a 50 gift card (from aunt Susie) for Christmas, I was observing a guy standing near and checking out comic books himself… and then I started to listen to his phone conversation (on cell) talking about “Spiderman,” I believed… unless he was saying that he just saw a spider, man!! But I didn’t think so; I think he was talking about Spiderman—the superhero … um, the fictional superhero, right?? And since he had a deep voice and a “beard,” I had to think that he was an adult—aka a grown adult male who loves superheroes, still!!! And then I realized that his buddy on the other end of his cell had to also be an eternal fan of all things superheroes, as well!!!?—perhaps there’s a club for all men who (don’t want to grow up) like superheroes?

I did quickly try to sneak a peek at the comic book that the “man” had stashed under his arm, to see if I could make out exactly what he was buying and if--just if--I had made some tragic mistake and the section that I had Nick practically stalking was, in fact … you know, the nude-girly superhero comics … if there was one? I did actually think that for a quick sec…

But then I realized no, and calmed my overactive imagination while standing by "observing" and holding my jacket, Nick’s jacket, Nick’s gloves, Nick’s hat, my purse, my hot coffee, my bags —and watched the boy and the man reading comics.

I noted that a lot of people (in all different age groups and cultures) love comic books, does this include superheroes for all ages? What do you think??

Everything Batman, but predicting not forever!!

2009-01-14T12:49:00.008-05:00

Dunanananana BATMAN, BATMAN, BATMAN…Dunanananana … (click here if you want to hear the orginal tv show song and the tune in my head...)

I sing that song every night as I walk down the hall and glance into Nick’s bedroom. As a spin-off of my last post (about my daughter’s favorite things) my son loves all things superheroes … and Batman was one of the gifts that he got for Christmas--well actually, several Batman things, but I’m not counting or judging. One of these Batman things were Batman pajama pant bottoms; and after several weeks, I still see these Batman pjs hanging from the top bunk of his bunk beds, and still hanging from its hanger—“like on display.” Hmm, it would appear that he was not wearing the pjs and not really caring about them because, you see--you still don’t know about my son and his clothes hanging issues and clothes storing habits …. more on that later… but it’s simply not true. I see him at night walking around with the very same black and white Batman pjs--as in “worshiping” form. So my conclusion to my not-so-heavy research into this very interesting mystery is that he is wearing these pajama pants at night--as I do witness him sporting them proud throughout the house; and in the morning before his shower at 6:15 a.m, I can only assume that he is carefully taking them off and hanging them back on its hanger at the edge of his bed (like Batman would do) so that they don’t get dirty, wrecked, wet, ruined, or spoiled in any way…

Good grief, the only thing I can do at that hour is drag myself to the kitchen---with all of my “original” nightclothes still on my body (and NO, they are not the same clothes I would have been wearing the “evening” before… my life isn’t that much fun … anymore!!). But all I can do is make and pour myself coffee; hanging up clothes would be a far-reaching fantasy at that hour--but my 14 year old has been doing it dutifully for several weeks.

Now let’s go back to this boy of mine dresser drawers: sock drawer, pant drawer, pajama drawer--which has clothes strewn about and disheveled. Some of the drawers don’t even shut all the way because the clothes are so carelessly thrown in and hanging out--like a real slob’s room would look … But his Batman pjs are hung back up fresh, careful and without a wrinkle--and on display respectfully at 6:15 every morning.

God forbid I wash them and some tragic thing happens in the washer--my washer is on the fritz and it has been known to wreck clothes: rip, destroy and eat up to shreds ….

Ohhhhh, don’t even think that!!!!

But I don’t think that superheroes will be with him forever; at least not at the same obsessive level. If I’ve been observing anything in my life, it has been my son. And through the years I’ve noted that what he used to love and obsessed about, he no longer finds interesting. He doesn’t talk about, or read about, or play with dinosaurs (his very first obsession); and he hasn’t mentioned the words Power Rangers in years. So, if I were a scientist and this were my case study, I would conclude that this too will pass and he will move on to things of adults nature--as he grows into an adult: Women, sex, family, jobs—eek, sex and women are not comforting elements to think about; but one must face the tune as most parents across the globe do, regardless of if we accept it or not.

And if I can throw a cyber penny into a cyber wishing well and make a wish and have it come true, I wish all these things for him--everything he wants in life--even the scary adult stuff that all good parents must bear to witness of their special children. And I wish for a nice woman in his life who will love him more than anything and anyone; and…um…who just so happens to have a good paying job as a successful attorney, doctor, scientist--no, I’m not picky, but a scientist would be preferred, because that would be so much more fun for him!! And, of course, this wonderful woman would find her mother-in-law equally wonderful, deserving, praiseworthy … Okay, okay, I’m going too far, but it’s my penny and my wish!!

Smashies -- Kids Tested ...

2009-01-13T07:17:00.008-05:00

Got kids? Or better yet, got kids who love apple sauce? I do! So when I was asked to review a new, all natural and organic apple sauce called “Smashies,” I was all over it!!
My son, Nick, is the applesauce connoisseur of the family and was just “delighted” when we received our Smashies; just so excited about trying a new product, and that it was “apple sauce,” Oh, my! After a taste, he just loved it and couldn’t get enough; he ate 2 out of the three we received in samples and has since asked for more. Now my daughter, on the other hand, is very picky about food and has never liked applesauce, so when I gave her a pouch to try I expected her to give it back to me, but she didn’t. I think she was intrigued by the packaging, the pouch, and after just a taste, she was going in for more—Mmm “approved by Meghan,” now that’s hard to beat!!

They even loved the pouch that it comes in—easy to open screw top and no spoon required!! It’s a great idea and ideal to eat anywhere at anytime. And, of course, I love that it’s organic and all natural—that’s No. Sugar. Added.

And no, I’m not getting paid to review this product; it’s definitely a green light for two young special teens! And yes, I'm having trouble refraining from calling it a "smashing idea!!"

Nick has requested that I pick some up; and after searching the Internet, it doesn’t seem to be available in stores in my area as of yet, so I will have to purchase them online through their website.

Here's more from Smashies:

Smashies is an all-natural line of organic applesauce that comes in a revolutionary pouch. No mess, with an easy to open screw on cap, it’s a great way to keep a nutritious and fun-to-eat snack at your fingertips. Each pouch yields 1 serving of whole fruit and is packed with antioxidants and Vitamin C. There is no added sugar or high fructose, and it’s low in calories and all natural. I’m hoping you agree that Smashies is a great product to feature.

Fact Sheet:

Who We Are: Smashies is the first organic, no sugar added “squeezy” applesauce line in the United States. Packaged in portable, convenient no mess pouches, they are perfect for lunchboxes or on-the-go families.

Smashies Story: Hot on the success of his all-natural vegetable juice blends, Karsten Robbins decided to launch a line focusing on children. Armed with intimate knowledge of how to bring products to market, he quickly honed in on the key criteria that would guide him: organic & no added sugar (because he has kids, too), convenience, eco-friendliness, and taste. Karsten wanted a product made of real fruit, but with the convenience and portability that a squeezy pouch could offer. In October 2008, Karsten officially launched the Smashies line of all-natural products.

Flavors: Snappy Apple
A blend of Organic Red Delicious and Organic Golden Delicious apples gently pureed.

· MSRP: 3.2 oz pouch $1.49
Smashies Health Benefits:
· Each 3.2 oz pouch yields 1 serving of whole fruit
· Packed with antioxidants, 25% Vitamin C
· USDA Organic
· No added sugar or high fructose corn syrup
· Low calorie, low sugar, all-natural

Eco Friendly-ness:
· Flexible packaging developed to reduce land fill space
· Less weight, therefore less fuel needed during freight
· Less breakage means less waste during manufacturing, in transport, in the store and in kids hands

Smashies Differences:
· Organic, no added sugar, preservatives or high fructose corn syrup
· Tastes closer to a real apple: snappy, tart
· Squeezy pouch makes snacking a no mess, all fun affair
· Guilt-free for parents: organic, no added sugar, it’s just apple
· Perfect on-the-go snack
· Convenient
· No messy hard to open foil cups or spoon needed!

Founder: Karsten Robbins

Plantings: Smashies are launching in stores all over the East Coast in October 2008. Look for them in natural food stores, coops, gourmet delis and soon to be in Whole Foods Markets. Also available for purchase online at www.smashies.com.

Website: http://www.smashies.com/

Consolation of raising a special child--or is it?

2009-01-11T09:30:00.008-05:00

Meghan still loves Barney, you know the big purple dinosaur… although I've noticed that the show has new kids from when she used to watch it--years ago, and as I’m listening to it right now from down the hall, I hear a new Barney voice as well. Oh, nothing stays the same--well almost nothing, but Meghan couldn’t care less, she’s jumping around to Barney and the music as she did when she was still a baby sitting in her walker--just bouncing around with the same big smile on her face. Even though she’s now 13, it’s still cute as hell to hear and watch. A child who can do more for herself than she could as a baby, and learning math and spelling, and long since has learned to write her name, still finds Barney a great joy.

Every time I see moments like these, from either one of my kids, I can’t help thinking that these are the moments that mothers (parents) of typical kids can’t relate to or identify with—among other things; it’s kind of like a weird consolation to having a child with autism and other developmental disabilities; that there is a piece of them, an innocence that may never mature—and likewise, child-like behaviors that a parent will never tire of; but, also, a fine, fine line of crossing over to a damnable offense, and an unsettling future.

Oh, Private Practice…autism and vaccinations

2009-01-09T08:50:00.011-05:00

Oh my. It was real, it was raw, and it was true ... The power of television certainly does outweigh the power of words and of celebrity, at least in my opinion.

ABC's Private Practice aired a show last night about a mother with three young sons, the eldest child had autism and it demonstrated that this mother was truly commitment to her autistic son by revealing that she sought after new and innovative therapies to help him any way she could, but it also revealed that she had chosen to forgo immunizations for her other two younger sons for “fear” of getting autism. And, unfortunately, one of her sons contracted measles and died.

The show certainly spelled it out in black and white, at least for me. It was so heartbreaking to watch because you just knew how it was going to end, I mean the boy with measles just had to die to make “the statement” and it was a fierce statement about pro-immunizations.

The intensity of the drama grew even more riveting when the doctor treating the children took it upon himself to immunize the third child, even to the mother’s gross refusal

I think that this nighttime soap opera—drama—did a great job at showing us the “total” picture-- that not immunizing your kids could start an epidemic of sickness and death throughout the world--and a new fear. The show even demonstrated how others could so easily contract the disease because it is so contagious, including a pregnant woman’s concern for her unborn baby and the possible sickness and birth defect that the baby could be born with—just like that.

Personally, I am for immunizing children. I do not believe there is conclusive evidence that immunizations cause autism, and since there is no scientific or conclusive evidence, then why put a child and a society at risk for preventable disease and death, especially since the MMR does not contain Thimerosal (mercury based preservative that was suspected of causing autism), and since other immunizations, including the flu shot, can be given without Thimerosal, then …

What about you, did you see the show and what do you think?

Falkenbury Farm and Guest House -- Vacation Idea for Children with Autism

2009-01-07T08:04:00.007-05:00

I love Vermont! There's so much to do and see throughout the year: summertime sightseeing, hiking and swimming, fall foliage, and winter skiing... Last year I took Nick to White River Junction, Quechee and Woodstock and stayed at Killington. We explored everything including several farms: cheese and maple syrup making; we ate lunch overlooking the river and a waterfall; and Nick got to see how pottery and glassware was crafted by the artists themselves. Every place we ventured, there was something unique to see and explore--and the mountain backdrop is a photographer's dream... And when I saw this note from Falkenbury Farm I just had to share it...

A Note From Falkenbury Farm:

Recent visitors suggested I try to market our guesthouse to parents of Autistic children. Their child loved the animals and whole atmosphere of the farm. The parents were able to relax completely in the guesthouse and cook and do things whenever they wanted. They had been searching for 'hands on' activities for their child. He was able to feed the cows, visit the llama and bond with the goats. If you have any ideas how to target such an audience, I would greatly appreciate it. Or if you would prefer to simply share our website with someone you may know? Benson, Vermont.

http://vermontguesthouse.blogspot.com/

The Breastfeeding Debate--it's so much more than that...

2009-01-05T12:50:00.006-05:00

Sometimes I have to laugh at parents who sit and worry so much about such matters as whether to breastfeed and not to breastfeed (ongoing debate), and that these young mothers become so anxious about possibly “screwing up” the development of their child so early on…. These parents are made to feel guilty and shameful, and are usually open for ridicule from the “expert moms” and doctors who believe that they should over not.

As a mom who was not successful at breastfeeding her kids, Nick was just too hungry to be satisfied by my milk supply, that I would lean toward the bottle to supplement and then just allowed the convenience to take hold—because I knew my son and I knew what was best for him—case closed. Did I feel bad about it? Yeah—I’m no different than any other mother, but I also felt like a better mom for listening to my gut and not the words of other so-called "wiser” moms, doctors, and the damned “baby book bible.”

My point is that there are so many other elements to parenting—so far beyond those first few months and the breastfeeding issue—that parents really do need all their energy and focus placed on these other elements of their child’s development, progress and happiness. Trust me. Focus on getting to know your child for who he is and pay less attention to comparing, competing, or preaching.

One day when Nick was about 7 months old, or so, we were dining at a small restaurant in Boston and Nick was holding his bottle (Playtex) with one hand. We thought nothing of it because that was what he was able to do at that stage of his development. The people at the next table to us also had a son of about the same age and just had to say something about Nick. They were so impressed and in awe with his ability at his age that they started insulting their own child and his “lack of” abilities.

I didn’t walk away gloating that my son was a genius of all babies his age and soon to conquer the world as Nick the Great—hell, I already knew he was great!! But I took his abilities at what they were for him at that time. We all acquire our own skills, talents, concepts and opinions that others may have yet to acquire or own—heck, I’m still trying to acquire some myself, but the one thing that I did know about my son at that early age was his ability to sit, attend, and absorb information—even early on—and these are the “bigger things.” And more importantly, I learned to trust my own instincts about him—as my shield and armor—because I knew him so well.

Flash ahead a few years and we knew that Nick was slower to develop and needed special help; but, again, I also “knew” him and I knew he was taking in information and asking for names and labels and absorbing everything that especially interested him, regardless of what others were saying and prejudging his abilities.

So when a group of doctors—highly acclaimed in their field (who says so anyway??)—told me quite conclusively that Nick would be nothing more than a trash man in life, I thought what a fool I would be if I listened to them and not myself—someone who knew him and had learned to trust her own instincts. To actually believed in them more than I believed in us. To believe the words, convictions, and thoughts of others who had only known him for a few short hours as opposed to my expert opinion as someone who had known him his entire life—through and through—as only a mother could. To actually be swayed to believe or think differently of my child than what I had already come to trust in myself; well then—I would be a fool.

Why I blog

2009-01-02T13:37:00.006-05:00

I know what it's like to have an autistic child, hell, I know what it’s like to have two autistic children. Even though I know what my life is like, I certainly don’t know what you go through day in and day out. But because I see autism at its severity, and on a milder scale, I think I know a little about you.

I didn’t start this blog to bitch about my unfortunate life. I don’t want to take a stand for “why me” and preach my anger for anyone to listen. I chose to start this blog to find you. To find those who are living a similar life with kids with special needs. I also hoped by telling of my experiences--my successes and my failures--that I could help others just starting out on their own journey of a “different kind.”

I know what it’s like to be angry and sad and cry yourself to sleep because you know more than anything else in this world that the child you love more than any other person is going to have a difficult life. I know what it’s like to be criticized and not understood. To be ostracized. To be cheated. To be taunted. And to be beaten down and intimidated. I also know what it’s like to stand up and fight, fight for what I want and need, and to advocate for my children and for their futures anyway I can. I choose to fight to keep ineffective teachers or bad therapists away from my kid’s classrooms; and I choose to work hard to afford good therapists not matter what. I know far too well about taking on a school program and meeting ugly obstacles, but I choose to persevere and not surrender. I also know that I’m lucky, too; to be living in a state that has good schools, services, programs and plans available to help me if I ask—and if I know how to ask. I know many states that can’t compete and, therefore, people can’t help their children as much as I can. I hear. I read. I listen. And I’m learning too. And count my blessings that I don’t have to go through what some may have to endure—but I’m willing to try, help, come up with ideas and think outside the box.

As far as I’m concerned, people who read my blog have something in common with me and I want to listen to what you have to say and I want to help.

I don’t think of myself as “fortunate” to find that everything I’ve fought for to help my daughter has now failed me; Meghan attends a residential school because I have no other choice, frankly, and am faced with no other options besides a deserted island and an isolated life. And if this school program (extreme in its intensity) doesn’t work, then I know my daughter’s future is forever jeopardized.

I’m a parent--just like you--trying to work hard to keep my kids head above water.

Wishing you a Happy New Year

2008-12-31T18:17:00.004-05:00

Happy New Year!!

I can't afford my autistic kids

2008-12-30T16:20:00.006-05:00

Can someone please explain to me why Children's Hospital audiology (hearing, right?) cost me 500.00 for Meghan to have a hearing test? I really want to know. Is it because they are highly regarded professionals in the world of all things that hear? Or is it because Meghan is autistic and, therefore, costs more?... or is it because they want to rob me blind (and now I'll have to see one of their ophthalmologists, too) and since Meghan goes to these appointments with her school, hmmm ...

What's really interesting and has inspired me to open a bottle of wine and start gulping is that the first test was inconclusive and they want to do annooooooother teeessssst! Sure they do! At 500 bucks a pop, I would want Meghan to have another one too... and maybe a third, and a fourth... hell, why not have her visit every month!!! Or perhaps I just need to change my career? So what does it take to become certified in ringing some bells in various tones???

I'm hearing they rake in the dough!!

This is second to the "ten minute" neurologist at 800.00... Really, that actually happened! Is it me? Do people see me coming and then charge me 100 bucks a minute?? I don't charge 100 bucks a minute, do you?

Or is it that when doctors hear "autism," their price automatically triples ... Is autism just a secret code word for "goldmine?" I'm wondering as I'm getting ripped off.

Or maybe I'm not? You tell me?

Chicken Cordon Bleu, it’s what’s for breakfast…

2008-12-29T15:08:00.004-05:00

No, most people know Chicken Cordon Bleu as a fancy dinner plate at some nice French restaurant—or other, but Meghan calls it breakfast.

I know, I know, I’m raising a princess; but she was just so good all week—no outbursts, no hand biting, no bouts of destruction of any kind—you might be thinking “Miracle on 34th Street,” but, no, it was more like “Holly Golightly Does Vacation” (home is like vacation for her) and she was good as gold and ecstatically happy and singing all week. (Note, some exaggeration in the previous.) She went back to school yesterday and seemed ready for it, too. Really! I didn’t have to pull and yank and bribe, and she was easy as pie (and ate pie, too) to motivate and get showered, dressed, and on her last morning (boy, I sound like she’s dying), enjoyed a different favorite for breakfast—pancakes. (And I never want to see Chicken Cordon Bleu for the rest of my life!!) After “pancakes” she waited for her bus to arrive, got on with a hop, skip and a jump (I’m exaggerating again) and even blew us a kiss (not exaggerating), and she was off to school until she comes back home for the weekend—in two weeks.

Wow, right!? But I’m no fool. I know this week was a good week because of Christmas and all the treats that she enjoyed, but she’s still demanding and quite a bit of work when she’s home. I hope that doesn’t sound cold, but I know my girl.

I’m just so glad that she enjoyed herself, and we enjoyed her, as well; these are the moments to remember and cherish—and they do come! And because it was such a successful week, it was sad for us on her last night home and knowing that she will be gone for another two weeks... I was sad and felt like crying as I snuggled with her underneath my bed comforter, while we watched a cartoon show that she likes, and I briefly thought to keep her home for another week—since Nick is home from school and her vacation is when we say it is… but, then, I quickly dismissed that thought with a wave of my hand, because I knew that a good week doesn’t mean another week would be good for Meghan.

So you might be wondering why just two weekends a month home for Meghan? We chose alternating weekends so that we could have more time with Nick on the opposite weekends—take weekend ski trips, sightseeing, hiking—these things aren’t so easily done with Meghan, nor does she like doing them. And in the past, we would have had to forgo trips to anywhere (or at least plan heavily around Meghan) for fear that she would be difficult or non-compliant (A plan B was always in the works!)—A lifestyle that was neither good for Nick nor offered him much of a life—or us, for that matter.

Two years ago in August, we took Nick to Vermont for a little weekend away (or one night, really). It was the first time we ventured without Meghan and I did feel a pang of guilt for keeping her with my parents and my brother, but it was for Nick and we enjoyed it tremendously. We even laughed about it; because what we ended up doing and visiting were things and places that we could never do or go with Meghan, like swimming in the river or watching glass blowers make fine glassware in their “factory” (as Nick called it) and above all, actually wandering through the glassware gallery and viewing all their work. Let’s face it, one tantrum with Meghan and we would have been writing GREAT BIG checks and banned for life with our mug shots posted in the gallery entryway (or posted up at the state line) looking like: Husband and me: crying because of big check writing; Nick: smirking and pointing to Meghan; Meghan: laughing hysterically, and, incidentally, the best darn photo that I would have ever seen of her… and Reading as caption: Crazy People Alert, Absolutely No Entry!!!!…

These are my daily thoughts in life by the way!!

So this schedule allows us to keep a good balance between the needs of both my kids, and Meghan seems to love it as well. She has so much going on at school with the activities there, she even has school on Saturdays—which she loves.

So that’s my story… and I’m sticking to it!!

Teaching the Spirit of Christmas

2008-12-27T10:12:00.007-05:00

Every year it’s the same, but it has gotten a lot better than it was. When my kids were real little, they were seemingly underwhelmed by Christmas morning as if they really didn’t care for it (opening presents, my excitable voice hoping that it would become infectious) but they would be opening presents like it was a chore. So the following years I would talk to them about Christmas, Santa and presents. On Christmas Eve I would make special Christmas cookies with them, mention Santa and his sleigh, buy them new pj’s (as my grandmother used to do for us as a tradition) and read Twas the Night Before Christmas to them as another start of a tradition to try and evoke the Christmas spirit—of some kind.

It wasn’t until Nick was around 10 that he started enjoying Christmas--or at least it started to show on his face. He seemed excited about opening presents—and wanting to—but it was still nowhere close to how excited my siblings and I were on Christmas morning—but getting there.

Meghan, on the other hands, could simply go without Christmas and presents, she just didn’t seem to care … and it certainly didn’t warrant enough excitement to actually get out of bed as early as 7 am. No way, go away!!

The last two or so years, including this year, Nick has really been into it. It was so exciting to see. I mean don’t we become parents just to see our little kids excited faces on Christmas morning!! This year when we got the tree, he decorated it almost all by himself … after I wired it up with lights … and he hung the stockings with care … and talked about Saint Nick who would soon be here. ;)

We have also been teaching Nick to buy gifts for others as well as anticipate them for himself. Gift giving is still a little harder for Meghan to understand, but we’re working on it. For the most part this Christmas season, Nick’s questions have been just a little unusual: for instance, when we listen to Christmas songs (which he loves from year to year and one in particular called Here comes Santa Claus…), he asked me why Jesus Christ was mentioned in a song because “That’s a swear word??” It took a few days to help him understand that this was okay in this circumstance … forget about religion school … and church is a castle, right? Ugh. It’s hard enough teaching Nick about Christmas and the Christmas spirit, but religion is a whole other abstract vs. concrete obstacle to encounter, but I try. And I do feel a little regretful that I didn’t teach him religion when he was younger. I grew up going to Sunday School and church every Sunday, even though I didn’t really believe--it was forced upon me. But it’s up to Nick to decide for himself if he believes in God, so I have been teaching him more…

And I must add that this year, in particular, both my kids were into Christmas … even though we still had to drag Meghan out of bed as late as 8:00 am—she came! And they both were excited about opening their gifts with smiles on their faces. And Nick noted that he gave us presents, too!! Sooo nice!

Now all I have to say is Yippee! It finally came… after 14 years of trying, the Christmas spirit is finally within and I have the rest of my life to enjoy it with them, too.

So, a little (lot of) patience and a better late than never attitude when raising special needs kids is the discipline!

Which side does the stamp go on..

2008-12-24T09:39:00.008-05:00

As the holidays are approaching you would think that I was oblivious. Nonsense. I love to go Christmas shopping during the last two days. It’s festive, exciting, and deal-catching. I walked into kbtoys (going out of business) and found a few things for Meghan that were under 10 bucks—a few extras. But before that, I had Nick with me and we had a few stops to make. One was getting his haircut and while he was doing that, I was busy on their comfy couches doing my Christmas cards. Yup, that’s right. I was writing out the envelopes of my Christmas cards and had my huge address book stuffed in my bag. No better time than that last possible moment, dontcha think? Well, actually, they had just arrived in the mail—late, or later than usual for me. But I take great pride in the fact that I got them out in time for Christmas—at least most of the people on my list will receive it in time. (Then again, it is a holiday card—good for another week!!)

As Nick was sitting with me, he was looking handsome with his freshly cut hair. I asked him to help me by stamping the cards. I showed him how to do it or which side the stamp goes on with one example and he was good to go. I finished them within the half hour, with great speed and an extra helper (Nick). And the hair cutting people were quite amused. Then when I gathered the cards I noticed that the last 10, or so, were stamped on the wrong side—the left and not the right. At first I thought about it and wondered where I went wrong. He was doing fine when I first watched him and then BAM he switched sides. I gently brought it up, and gently is the optimal word. And he said, oops it’s just a mistake. A mistake that didn’t have to happen was what I was thinking. And a mistake that required me to actually have to stop in at the post office (fight the lines) to make sure that this was okay instead of just dropping them in the mailbox.

I’m still trying to figure it out, though. I think that Nick becomes lazy with his work is what I’m thinking. He starts off fine and then he becomes disinterested and lazy about “the work.” He does this with his math homework as well. He starts off trying and then the second half of his paper he gets the answers wrong and we have to go back over them. Perhaps it’s just repetitive work that he finds boring? The only other explanation was that he just didn’t think it mattered-- like a sticker. I couldn’t probe him about what he was thinking, because he’s too sensitive and he would have become defensive. And since we were out Christmas shopping and having some fun, I didn’t want to make him feel bad. But it does raise a very big red flag. How is he supposed to hold down a job if he’s lazy about working in general? Will this change for him? He’s 14 and does not have any skills besides talking about superhero movies and playing video games. So I’m a bit worried.

Incidentally, I walked into the post office and the line was long as I anticipated (not sure why, really?) so I started asking the people in line if they thought it was okay. No one knew. But they all became just as curious about getting the answer as I was. So as soon as a free postal worker was available, everyone in line brought it to her attention. The postal worker smiled and took them from me and told me that she would re-stamp them.

There’s the answer.

And today seems like a great day for making cookies (chocolate chip with chocolate kiss) as we do every year, but first, I will fight the crowds and the crazies and see what deals are out there today!!

I’ll do the wrapping at midnight! ;)

**Cookies: make chocolate chip cookies from scratch, add Hersey's kiss last 2 minutes of baking...sooo good especially eaten warm!!

HAPPY HOLIDAYS TO ALL OF YOU!!

The Big Three Words of Advice

2008-12-23T09:30:00.005-05:00

On another blog that I read the question was asked—many weeks ago— “What woman can do when they’re young to be happy later in life?”

I bring it up now because responses just keep pouring in. It’s definitely a real hot button. The question comes from the study that women start out (in their 20s) happier than men, but when women hit their 40s (and onward) they are not as happy as their male counterparts.

The advice given to women to ensure their happiness in their 40s and beyond were these (real hot buttons) words of advice:

--Don’t have kids (if you want to be happier later on)

--Keep your career (if you want to be happier)

--If you are divorced, get plastic surgery (will make you happier)

It is assumed that women are placed with the most responsibility in taking care of the kids, and by deciding to give up their job or work less, therefore, making less money and not being in good financial shape when (if) they do get divorced. And when you do reach that age (40 something—I just turned 42 myself) then you better start up with the Botox and the boob jobs in order to compete with the younger versions of YOU.

I agree with keeping your job or at least one foot in the door at all times. I had always “planned” on keeping my job—I was a business and technical writer for a large investment firm—but having had two autistic children one year apart, I became so overwhelmed with two Irish twins and a demanding job, that the only thing I could do was quit. I know in hindsight that it would have been too difficult to work (even part time) and deal with autism, but I do wish that I kept a door open, in some way, to make starting over a bit easier since my kids are older.

And I think if women want plastic surgery, then fine, but not because they “have to” in order to compete. I guess the theory is that if you look better then you get more opportunities and better men.

And as far as having kids, I think that women would lose out of a great experience. It’s a personal choice, but choosing a career over having a child(ren) is sad to me. These are the experiences in life that make you smarter, wiser, stronger and selfless—especially if you have special needs children.

So for someone in her 40s, I am perfectly happy. I do make less money than I did when I was in my 20s, and I look older, but I can't say that I'm not happy. Actually I think that I'm happier because I know myself so much better and am so much more confident and willing to take more risks and try new things...

What do you think of these “The Big Three” words of advice?

Here is the link for more..

Happy (20th) Birthday to me!!!

2008-12-21T11:01:00.008-05:00

my cake with 20 candles------(stop laughing!!!)

My son doesn’t like birthdays; not for me, not for himself, not for anyone he loves because to him it means that people get older and then they die.

I think this fear comes from my grandparents. They lived into their 90s and died within 3 months of each other. But before they died, my son (who was around 8 or 9) would visit them with me on a few occasions, and the very last time he saw my grandmother, she looked really old to him … scary old!!

And my grandfather could barely stand and slept most of the time. It was tough to watch because ever since I was a kid he would be so active and always doing something rewarding for himself. This small Italian man, named Americo, wasn’t much of a student but a talent in so many other ways. He was a ship builder and built a huge boat for his family. He was a plumber to support his family, he was a great Italian cook, and, in retirement, he taught the elderly people at the local nursing homes the craft of woodworking. And above all, he was a boxer. He loved boxing and tried endlessly to teach his 5 grandchildren to love it too. But we didn’t. He would painstakingly try to give us boxing lessons (and accordion lessons too, shhh, don’t tell anyone) but we hated it and would let him know in our own way. (Why he couldn’t teach us Italian was lost to me!!)

But while this frail, old man was trying to stand in his hours of death, he jabbed Nick a few familiar boxing moves with every bit of strength he could muster and Nick responded back with the same moves and loved it—his very first boxing lesson. My aunt yelled to Nick to be careful…but my grandfather waived her off and enjoyed those few moments with him, and I’ve never seen this little Italian man happier. He finally got his boxer.

After that day, Nick started asking me a series of questions: like “Why?” "Why do people get old and wrinkly? I don’t want you to get old and wrinkly because that means you will die.” He then started obsessing about age and didn’t enjoy birthdays, even his own. I tired to explain to him that age doesn’t happen overnight, it takes 100 years. But the theory of age and time is still abstract to him. So we enjoy birthdays in a more subtle way; like having lunch or dinner at a favorite restaurant, or at my home with a few family members and cake and presents and a cross my fingers promise that we can do our previous age over again.

So this morning, as one might note, he was not so pleased to say happy birthday to me. And when my parents called me for their annual song-singing of Happy Birthday, and loud enough for everyone in the room to hear, he looked more horrified than happy. But he did ask how old I was. So I asked him how old he thought I was.

He paused and then paused some more, and said 20?

I smiled!!

And it's snowing again in Massachusetts!!

On Behalf of Zoo New England -- Fun with kids in Boston

2008-12-20T10:13:00.005-05:00

Sing-a-Longs with Su Eaton!

Every Saturday in January and March, 11:00 a.m. – Noon, Franklin Park Zoo

Escape the winter chill and bring your little ones down to the always-balmy Tropical Forest for family entertainment provided by our professional children’s entertainer during our Saturday Sing-a-Longs! Wildly popular children’s entertainer, Su Eaton, will perform every Saturday in January and March. These events will be held in the Hippo Theater at Franklin Park Zoo and are free with general Zoo admission. Saturday Sing-a-Longs will be held January 3, 10, 17, 24 and 31 and March 7, 14, 21 and 28.

Go Ape during School Vacation Week! February 16 – 20, 11:00 a.m. – 3:00 p.m., Franklin Park Zoo

Set off on a tropical excursion during February school vacation week and bring your family to Franklin Park Zoo for an ape-themed getaway! Learn about these incredible animals by visiting our gorilla troop at the Tropical Forest. Children of all ages will have the opportunity to participate in a variety of creative and educational ape-related activities.

http://www.zoonewengland.com/

Sexist boy of mine…

2008-12-19T12:52:00.005-05:00

While having dinner at my parents’ house Nick will be sure to bring his plate to the kitchen, scrape his plate in the trash and place it in the sink, WITHOUT being asked and regardless of the fact that my mother says “Oh, that’s okay, Nick, you don’t have to do that.” (as a grandma would say). I tell her Yes, he should do that and beam with pride because he makes me look good...Well doesn’t he?

But don’t be fooled. My boy will not do the same for me at home. I have to remind him to clean off his plate and place it in the sink, and this request usually follows with a “Ugh” and “Heavy Sighs” and the usual: “Why do I have to work, I’m done with work”…(translation: he works all day at school so give him a break). One day while my brother was over for dinner, Nick told him that clean up and doing the dishes was “Mom’s job.” Nice, ‘eh!!

Oh Boy, did sirens go off in my head. Please note that I am against the notion that men and women have their specific jobs in the household. I don’t care if women are stay at home moms (I don’t like the term: homemaker), men should share in the cleaning of the home as well. I cringe when I walk past the toy vacuums and ironing boards in toy stores… and I don’t think that people are buying these toys for their sons. I am not saying that I’m totally against gender specific toys like Barbie (as it is a real issue for some women) but I think if the child wants the Barbie then fine … it’s a personality thing in my opinion. But don’t eliminate the football from her toy box, either.

So I started making sure that he takes out the trash and cleans off his plate. I did start having him empty the dishwasher, but that, to him, was like asking him to build the pyramids of Egypt!! My point is that he complained through the task every step of the way, and because he is a bit of a slow worker, it did take him quite a while. The bad mother in me just couldn’t take the complaining for the long 15, or so, minutes it took him to complete the chore (with my help) … So, I will just stick him with trash, mail, hanging up his clothes, and Windex-washing windows duties for now, because they offer quicker relief and a feeling that he has accomplished something sooner—and then come sooner smiles and sigh of relief when he is done. And I will work him up to dishwasher duties, eventually. But I am relieved that he knows to help out at my mom’s house, so that’s something!!

But I do know where he gets his sexist attitude; it comes from me doing the housework because I work at home. And also because I like a clean house (as my son does) and my husband couldn’t care less.

Speaking of housecleaning, how's this for sexist: Have you heard the one about the maid and her skimpy little French number?

No joke … it's real. It's about a businessman who needed more money and hired his wife out to clean houses wearing a skimpy maid's outfit, apparently business is boobing ... I mean booming!

My opinion: if the woman thought of the idea herself then great, but it was her husband who did. What do you think?

School Vacation Week and Anticipating a Problem

2008-12-18T12:08:00.006-05:00

Do any of you have trouble motivating your child to do things other than laying around the house in their pjs, watching too much TV and eating waaaaaaaay too much for their own good. If this is your kid (too) please tell me some of your strategies in getting them to get showered, brush their teeth and get dressed… and leave the bloody hell house…

We already use a social story but it’s the dragging and pulling and “working her” for hours that is the problem. The star reward system doesn’t work in our house…it only works at school where it’s extremely structured.

Then if we do eventually get Meghan out and drive to our destination, she won’t get out of the car—she’ll stay put if she doesn’t want to go in. She’s what you call stubborn, determined and sometimes even ((scary as hell.))

For instance, next week we have two events that we have to attend. One is my birthday lunch that I am inviting my family to enjoy with me at one of my favorite restaurants. The very last time we were there, Meghan scared the waitress, I won’t tell you what she did because it was kinda gross and very hard to write… but all of the food that the waitress was holding on her tray went crashing to the floor. Then she threw her coke in my father’s lap for no reason and then she tries to dirty her hands—anyway she can with food—so that I have to take her to the ladies room (for the 5th time) and that’s even scarier because she likes to clog up the toilets and make a flood—really, I will be in the same stall with her and be fighting her off from the toilet paper—people must think we’re nuts… At some point I just motion the bartender for a martini... and just start drinking the hard stuff.

And Christmas day we go to my parents’ house for dinner. If Meghan doesn’t want to stay there or is all done with the visit and we are not, then this clever girl starts breaking all things that are glass, porcelain, even china throughout the house. Last year, she starting plucking the glass ornaments from my parents’ Christmas tree and smashing them on the floor—how’s that for an attention getter? She’ll even go into the bathroom and unscrew the light bulbs and smash…I certainly don’t want to have to leave after her behavioral performances, to show Meghan that this tactic of hers will not work, but I can’t have her breaking things.

Do we sound dysfunctional? And I really have to say that moments like these really do make me appreciate my son, because he is so easy in comparison and I am really lucky and glad to have him.

I know this is a tough one, but any ideas to help make this week’s school vacation not so hard, loooooog and martini-drinking worthy?

A life that seems to mirror your own

2008-12-17T08:22:00.007-05:00

I love Christmas! Not only because it is a joyous time of year with winter snow, sparkling lights, and gift giving, but I also just love the little extra reds and greens that are unevenly intertwined within my daily mail’s bulge of bills--the holiday cards. It’s so bittersweet, but my son only sees it as sweet!! As he should!

It’s a form of catching up, especially from people that I don’t call or visit as often as I would like (isn’t if funny how we say that: “as much as we’d like!”). Anyway, most of the cards that I receive (and give) are those with photos of their kids. To me, it’s a fun glimpse into their life—a little peek—and to see how much bigger and older their kids have grown. Some of these yearly cards I keep from year to year, and I have half a mind to show you a snapshot of that drawer of mine!! There is one family that I especially like to receive a card from; it’s always the same picture from year to year (same pose in front of their tree). This family is very unique because it’s the family of a friend whom I've known for over 20 years. We talk here and there, meet for dinner on occasion, and when we do meet up or talk, we know what to say and pretty much will pick up where we’ve left off—like time hasn’t passed.

The very last time we talked I was troubled. It was a month before Meghan was going off to her new school (July) and we had them over in June for a barbecue with their two kids. My friend and her husband were rubbing my shoulder and hugging me and offering me their support, encouragement and good friendship. But then again, this is what friends do, especially a friend of more than 20 years. But don’t get me wrong, this wasn’t the part of our visit that was troubling to me; the troubling part was how I noticed that her 4 year old daughter (a child that took years to conceive) was not developing the way that children her age should develop.

She was not responding to questions, she would not respond to direction, she would not play appropriately with toys, and she had trouble focusing on one activity at a time.

I didn’t know what to say as my friend and her husband sat next to me and looked at me like I was the only one needing consoling. I also knew that their older child had just been diagnosed with ADHD and Tourette syndrome, but the only thing I said about that subject was simply asking about his well-being and school. I wanted to let them offer me more… or better yet, I was hoping that they would. But no more came with their story.

I know for fact that her brother’s child has autism and now she has a child with ADHD (which I believe is on the spectrum) and now, again, from where I was sitting and observing, their daughter seemed much worse off than their son was at her age. She actually reminded me of Meghan when Meghan was 4, but I sucked that thought down with every gulp of my wine.

The most troubling part of this situation is that my friend (of more than 20 years) does not want to talk to me about her kids’ issues, especially since I know that her daughter has been in early intervention since she was three—but that is all she ever told me—even though I had gently prodded for more. I don’t think that she’s in denial about her children’s problems, but I think that she thinks that they will get better, unlike my situation. Then again, maybe that is a denial. And I have not taken this lack of divulging, or confiding, personally. I certainly know how tough it is dealing with two kids with issues, but, to me, that’s the point that I’m trying to make and to get through to her: The fact that I’ve been through it all, from diagnosis, to where and how to get therapeutic services, to advocating for kids on an IEP within a public school systems, and, if not most important, offer emotional support as someone who knows what she’s going through—as she already knows—and something that she and her husband have always been so willing to offer me.

I just don’t understand. How do you not utilize and appreciate the knowledge and experience of a friend who has been there?

Stone ZooLights, 2008 -- Fun in Massachusetts

2008-12-15T19:45:00.004-05:00

Hi Holly, I wanted to pass along this fun and entertaining holiday event for the whole family. Thanks! Jillian Kuzyk

On behalf of Zoo New England Celebrate the Season at Stone Zoo’s “ZooLights 2008”

Share a Magical Winter Wonderland with the Animals of Stone Zoo this Holiday Season

WHAT: A beloved holiday family tradition returns to Stone Zoo when ZooLights opens on Thanksgiving. This winter wonderland attracts thousands of visitors each year who get into the holiday spirit by strolling along tree-lined paths lit by thousands of twinkling lights. Upon entering the Zoo, guests will visit Yukon Creek, which not only features dazzling holiday lights but is also home to bald eagles, porcupines, lynx, a gray fox and a pair of reindeer. Children will want to make sure they visit with Santa, who awaits their arrival in Santa’s Castle. Jolly Old St. Nick will be available for photos through Dec. 23. After visiting with Santa, enter a magical holiday world filled with fairy tale characters and dancing plush animals.

WHEN: NOW – Tuesday, December 30, 2008
**CLOSED ON DECEMBER 25**

TIME: 5:00 p.m. – 9:00 p.m.

TICKETS: Admission is $4 per person on the weekdays (Mon-Thurs) and $5 per on weekends (Fri – Sun). Children under 2 are FREE.

Members, and those who purchase tickets in advance online, receive a discounted rate of $3 (Mon-Thurs) and $4 (Fri-Sun) per person.

Santa photos and carousel rides are available for an additional fee.

WHERE: Stone Zoo 149 Pond Street Stoneham, MA 02180

CONTACT: For additional information, visit http://www.stonezoo.org/

Shame on me, I just want to have fun?

2008-12-14T20:57:00.005-05:00

On another blog there were two people who made comments that I really had to respond to. Now this is not new to me, I mean I respond to a lot of other bloggers and the comments they may receive if I’m so inclined; or when and where I feel that I can offer something valuable or write in defense. So when I read the comments (opinions) of two people, well I kinda laughed and then I kinda said to myself: well WTF. Let me just say that I am not picking on anyone, I’m wonderfully open-minded and I love when people offer their own opinions—it’s what blogging is all about, isn’t it? And good for people who have something to say and want to share their personal view and opinions. So with that, I wanted to post my response to these two comments.

One comment was to the effect that if a parent can’t parent their kids under their own care (meaning at home and not residential), then shame on them. And another comment was something to the effect that we only choose residential to get our lives back and then go out and have fun, as if we don’t want to face our responsibilities of parenting our kids.

Interesting!

Before I write my response to these WTF comments, I am going to tell you about how I felt today:

I was feeling really low today, part of my sadness is that Meghan has gone back to RESIDENTIAL school for the week and I will miss her spirit and liveliness… my other sad feelings are actually conflicting because I am just terribly relieved that she has gone back and I feel guilty for that.

How’s that for shitty!?

Watching her bus pull out of the driveway with her as the only child passenger was not only sad to watch, it’s dreadfully painful when you realize that she is leaving to live somewhere else simply because I cannot mother her safely and effectively. Meghan’s autism is that real and that raw, and clear to me that people who have to choose this route don’t do it for kicks or because they just want to have a little fun in their life--they do it for survival and to be a good mother.

My response to these comments went something like this: Obviously you don’t have a child who qualifies for a residential program. For some of us it is our only hope for our children and their future. For me, my daughter has and does physically attack me, and on many occasions has bit me and had once stabbed me in the hand with a fork, and has made my other autistic child fearful to be in our home. W/o a “team” of trained and fearless teachers physically prompting her (sometimes pulling), my daughter would not do anything: She would not get up and get dressed, she would not shower, she would not go out into the community w/o having a meltdown or at least threaten one—try that type of mothering w/o help and support. And I do know, because I’ve done it for 13 years. Most of us have tried respite (PCAs) in our homes, but it doesn’t work because there are very few qualified people who are actually available and who actually want the job for very little pay (respite doesn’t pay very much). Residences offer several teachers on hand at all times so that our kids have a chance to learn how to properly manage their behaviors (safely and effectively) as well as offer job coaching and training … and the only hope for a future and a life that a burned-out and powerless mother just can’t possibly compete with.

Yes, to that comment from Anonymous, since your comment was directed at people just like me, I will respond for just me: Life is easier when she is not home with me. It’s actually easy and wonderful. I can actually have a life; I can go to a restaurant w/o worry and enjoy my other child, I can drive in my car and go to the store … a simple, mundane task that everyone in the world takes for granted, but I assure you not something I can easily and safely do with my daughter on my own—ever! And since Meghan’s behaviors are just that challenging (and, thus, qualified for residential placement), there are no babysitters, or day care providers, or even qualified respite providers who want the job of helping me.

This criterion is not unlike that of others who have to choose residential for their children. So, now you tell us, what are parents like me suppose to do? Is it our duty to be held hostage in our homes, ignore the needs of our other children and be physically and emotionally abused?

And yes, Anonymous, being able to go to the store whenever I want to buy a carton of milk w/o searching hours for a babysitter (for a 13 year old) is freaking Disneyland for me. What do you call Disneyland?