New Website: Fearless Folks

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…

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, um, yeah...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 in 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. (Um…the cartoon characters...not the naked men dancers! But, hey, I 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)

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 teacher made him go back to his regular class by himself, which is walking down two large hallways to get to his regular classroom—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 I've 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 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, obnoxious people without suffocating.

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 alright and you were fine?”
“Yes, but I’m not fine...”
“Okay buddy, I’ll write a note.”

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

Anxiety or Manipulation?

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

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-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.

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 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 (sounds both disturbing and comical doesn’t it? but don’t get me wrong, I’m am not kidding.) I think I even joked to 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 something 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 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

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

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

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

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, beecause 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 him  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 neighbor's 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 not allowed.

The air of Gemini is among us...

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!!

Find out more about you and your sign here.

A time once remembered under lock and key

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….

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

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

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

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!

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

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!!

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

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!)

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.

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

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

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…

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 the future would hold 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 I was as a fighter, and fighting for 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 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 a better job?  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.  A gift to me. And  a gift 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.

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

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

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...

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!!

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

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

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

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....