The Contrast of Both Ends of the Autism Spectrum

I have such a great boy. This is what I’m going to write about today so if you already feel like vomiting from reading just that little bit, then hold off and I will send you a more depressing poem later—; But for now, I have got to tell the world that Nick is just such a great boy.

To be completely honest, raising both my kids (one with mild autism and one with severe autism) is in itself an interesting contrast. I have the benefit of raising both extremes of the autism spectrum, but I can honestly say that it was not a picnic raising both of these kids together. Sometimes I wondered if I didn’t have Meghan or if Meghan wasn’t autistic, would I appreciate Nick (autism and all) just as much as I did, and do now? Meaning that compared to the difficulties that I had with Meghan (being on the severe end of the spectrum), would Nick still have been a piece of cake? The answer to that question is: I believe so.

It wasn’t just the contrast of their disorder; it was also the contrast in their personalities, too. Nick is just an easygoing kid who will always do what I ask of him. Just last night I mentioned to him that he needs to participate in an after school activity, like taking up karate again, or we will head out to the gym and swim some laps--just something. Whatever you say, mom! And I also told him that he should be reading more, even though he is a good reader, but I emphasized that it’s a great down time activity. So, what did I catch him doing in his room at 8:00 last night? He was reading! Yup! And after some time he came into my room (where I was reading, as well) and asked me if he could stop reading soon because he was reading for a while and it’s hard to make it to the end of the book. (Don’t ya just want to eat him up alive!!) I think the poor kid thought that he had to read a book from cover to cover in one sitting! (No wonder why he doesn't want to read the Harry Potter books) I just wanted to hug him.

But honestly, whenever I ask him to do something, he does it. Please take out the garbage, Nick. He does it. Eat your vegetables. No problem. We are going on a boring car ride to find the closest Starbucks to feed mom’s caffeine addiction! He jumps in the car—no complaint. And if I tell him not to eat too much candy, like yesterday afternoon, he’ll ask me when he could have a piece of candy. Oh, just loving this boy!!

He listens to everything that we tell him and does everything that we ask. He is just an easygoing boy who likes to please. And did I tell you that he’s a teenager too!!

That fact that he also has a disorder and developmental issues doesn’t bother me in the least, but it worries me. I worry for Nick, more that I do for Meghan; as strange as that sounds. I know that Meghan is going to be fine. After she graduates from her school program at age 22, she will have choices, choices!

But Nick is caught in between. He is neither severe enough to qualify for programs nor is he mild enough to fit into the mainstream. It’s like the pendulum is moving this way and that but I just don’t know where it will fall, at least not yet.

In the meantime, I will continue to enjoy this picnic of a boy for as long as I can…

The Different Faces of Autism

One mom, who calls herself an autism advocate, mentioned that she feels lucky even though she has a daughter with (mild) autism. She counts her blessings everyday because she has two wonderful, beautiful kids. Her autistic daughter does have challenges but she is verbal and can speak and articulate her feelings, and meltdowns are few and far between. She attends a typical classroom and is doing just fine, at least at the moment. This mom believes that her life with autism is tough, but she is standing tougher in her fight against autism and will not allow autism to define her daughter. This mom fights to educate and advocate for her child so that there is acceptance in the classroom and in society. She is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. The golden key here is that she knows that her daughter could have success, and she prays for it everyday. She does feel lucky and will stand up strong to autism.

This mom is also very outgoing and has lots of friends because autism doesn’t hold them back. Again, autism doesn’t have to define their family, at least most of the time.

This mom goes to birthday parties; goes on vacations, but notes that her daughter doesn’t always play well or even played with by her peers, and it breaks this mom’s heart.

Life would be perfect if only her daughter could better her life.


There is another mom who also calls herself an autism advocate. Her beautiful daughter has (severe) autism and is non-verbal and cannot articulate her feelings, therefore, attends a restricted classroom that includes a time-out room for behavioral meltdowns. Her daughter is prone to having meltdowns and being restrained. She is not capable of going out with her daughter without a behavioral plan in place. For her daughter, the school bus cannot transport her to school without the safety of a bus monitor. Going out in the community is stressful and, in most cases, not successful, but she tries. She, too, is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. She does not want her daughter to be defined by her autism, but it can’t be helped no matter how much she tries. The very least of her daughter’s problems is having her make friends; instead, she would just like to get through the day with a lesson learned and a smiling face, and prays for it everyday. She does not feel so lucky and feels guilty because of it. She tries hard everyday to stand up to autism, but gets defeated most of the time—autism for her is just too tough.

This mom also has an outgoing personality but doesn’t make friends very easily, autism defines her daughter just that much that it becomes hard to make and keep friends.

This mom does not go to birthday parties, because she is not invited; would go on vacation but it's very stressful rather than relaxing, so it's avoided at all cost. Her daughter can’t play well with other kids, ever, and this fact is a long running heartbreak, among other things.

Life would be perfect if only her daughter could have a life.

Bachman's Pretzels this Halloween: from Autism Speaks

Raise Awareness on Halloween

This Year Bachman's pretzels come in snack sized bags convenient for handing out this Halloween instead of candy. 5% of the proceeds from purchases of Bachman’s special Puzzle Pretzel will be donated to Autism Speaks. Click the following link to find local stores that carry them:

http://www.bachmanco.com/puzzlelist.htmlIf you have any questions, feel free to email us at greaterboston@autismspeaks.org.

Boston Walk for Autism: from Autism Speaks

Greater Boston Walk Now for Autism 2008Sunday, October 19, 2008Suffolk Downs, East Boston, MARegistration 9:00 am Walk 10:30 am

Greetings
If you have already registered to attend the big event on October 19th, you will soon be receiving detailed information for Walk day. You will also find some Frequently Asked Questions below. If you have not yet registered, please visit: www.walknowforautism.org/greaterboston or call the Chapter office if you need assistance. 617-924-3300. Donations: When you collect checks for donations, please be sure to include the Donation Tracking Form which can be found online at:http://www.walknowforautism.org/atf/cf/{ed421eb4-f3f0-467b-b6d9-6f709dd02e5d}/Donation%20Tracking%20Form%20for%20website.pdf You can collect checks and turn them in on Walk day, or send them any time to our processing center at the following address. Please note that it can take several weeks to process (due to the wonderfully large amounts of donations coming in from Walks all over the country!) and be credited on your web page:

Send forms and checks to: Autism Speaks, Donations Processing, 5455 Wilshire Blvd , Suite 2250 Los Angeles, CA 90036

Please note: Your Registration # is the same as your Walker ID #.

Frequently Asked Questions About the Greater Boston Walk:
1. How long is the actual walk?The scenic Suffolk Downs Racetrack is 1 1/4 miles around. Some people go around once, others twice. You do not have to physically do the Walk if you'd like to just raise funds, attend and enjoy all of the festivities of the day.

2. Does everyone have to register prior to October 19th?Yes, we would like all participants to registers online or via the phone so that we have enough food, t-shirts, supplies, etc. on Walk day. Also, when a person registers they will receive mailings and e-mails with important items and information they will need for the event.

3. What goes on at the Walk?We will have music and entertainment, food from Uno Chicago Grill and other contributors, lots of children's activities (and also a quiet area) and a Resource Fair with many autism related programs, services and product representatives.

4. Do you still need volunteers?Yes, we need many, many volunteers to make this large event run smoothly. Know any high school or college students who need service hours? Please encourage them to contact us at greaterboston@autismspeaks.org or call 617-924-1225. Individuals and groups are welcome. We have lots of available and will be sure to make volunteering fun.

Team Captain Checklist:Use this checklist to ensure that you have completed all of the steps necessary to have a successful Walk Now for Autism team this year.Make sure all team members have registered themselves on-line Involve your company/employer Did you email your co-workers to join the team? Did you involve your boss to rally your company team? Have you asked friends, relatives and neighbors to join you? Encourage all team members to be active fundraisers for autism research, awareness and advocacy Email or call team members regularly to answer questions and check on their progress Create team t-shirts, buttons or a banner to increase your visibility on Walk day

Falling Through the Cracks

I have this one problem about my son. As you know he has mild autism and he is developmentally behind his typical peers (I guess?). I mean I know he is not academically level with his peers and he is in a special needs classroom most of the day. But I really do think that every year he is making significant gains. At least we notice at home. He talks to me about everything, but I know he doesn’t do this at school. His language skills still need some refining, but he’s coming along. He loves to ask questions (at least to me) and likes to learn about things: ask him about any animal, he’ll know it all. He reads very well and we encourage him to do so... So, life is good, until we see someone he knows from school in the supermarket. Like yesterday afternoon.

He will be moving along with me, most of the time pushing the cart around and freely selecting his foods. Then "the big shut down." I already know the signs. He either has spotted an old teacher, aide, or classmate of some kind, and it’s like he’s a different, more challenged kid. Ugh!!

No wonder why teachers and aides don’t believe me when I say, “He’s not as disabled as you think.” (defend, defend, defend) When I say shut down, its almost like he can't even keep up with me when we walk down the aisle. He certainly no longer talks. Usually he rules the roost when we shop—telling me what he wants, taking over the shopping cart, there is definitely a bounce in his step. Just like at home, he is so independent and can do everything. So I'm thinking that he "acts" disabled either because he is shy or he is getting away with not working to his fullest potential at school (you know: the "label thing")--I’m thinking the latter.

I know this because one day an old aide of his spotted Nick at the market and came up to me and said , "Wow, I didn’t know Nick could even talk. " Jeeeeeeez!! Can someone throw me a bone? I spend so much time looking like a crazy woman trying to tell these teachers, aides (or any stranger who will listen), that he is doing great, understands quite a bit, and can talk, talk, talk our ears off. Okay, sometimes he obsesses about topics but he is getting better at having good conversations with us.

The difference between school and home: at home he can open a can of anything and microwave it and have it for snack, put his dish in the dishwasher and take out the trash. Then go to his room and hang up his clean clothes and send the dirty ones to the laundry room. He could do his own laundry if my washing machine knob wasn’t broken off and required a pair of pliers and a little good luck to work the darn thing …

And at school: “Well we would like for him to learn to at least clean off the counters …”

WHAT!!!

And the latest “easy” work coming home from school doesn’t impress me one bit!!


Next year is high school for him. I am starting to look for an alternative school than the “life skills” program that he is currently in. Maybe Tech. Ed?

Anyone going through the same thing—that their high functioning autistic kid is falling through the proverbial cracks? Any recommendations?

Coming Home Again

I had a dream about something that will soon be a reality. Well at least half the dream will be, I hope.

I dreamt that Meghan came home for her first weekend in two months. This dream is the result of what I know will soon happen. We recently had her IEP meeting and one of the key points was arranging for the bus company to schedule her trips home from school. She will start coming home every other weekend. (We will still visit her at school during the off weekends.) This will be such a nice schedule. And I look forward to her coming home again and I’m obviously thinking about how she will react to being home. Will she bounce right back and trot around the house as if she had never left; or will she act like a complete stranger and wonder when she’s going back “home.” Yikes!

In my dream she walked in through the front door for the first time but I couldn’t completely enjoy the moment because a sales woman was also at the door--selling encyclopedias, no less. I tried to cut her off without being rude or slam the door in her face, but she proceeded to entertain me before the big sales pitch and started doing acrobats in my front yard; like a gymnast. Doing flip after flip after flip; forward and backwards; I must say she was very good. While this woman was flipping in my front yard, I was also trying to look around to see how Meghan was doing and reacting to being home. I found her running up the stairs but couldn’t see her face. I think she had a bounce in her step, though, so that was a good sign.

But the darn gymnast/encyclopedia sales woman was still flipping in my front yard. Until she finally says: “Why aren’t you going to buy my encyclopedias?”—cutting right to the chase—oh good! I explained to her, as I do with a lot of annoying sales people, that I have handicap children and their therapies are putting my right under (cue sad face). Yes, pulling the old sympathy card, so what if it’s pathetic; it’s effective most of the time.

Then I proceeded to tell her of the two-year plan my father was on to pay for encyclopedias for us when I was a kid. We would get one a month until all A-Z encyclopedias were in our bookshelf. Then we would pretend to be happy as a clam and read them here and there, for appearances, of course; until one day all we were doing was dusting them as they sat in their designated spot in the shelf looking all pretty from A-Z.

So I told her: “Who needs encyclopedias now, anyway; we’ve got the Internet.”

“Become a gymnast!” And then slammed the door in her face.

For all you dream analysts out there, what’s up with the acrobatic sales lady anyway?

Having Fun with Jenga

I can honestly say that I’m the happiest mom right now just watching my boy do the simplest of things. Or play the simplest of games, as he has been doing for the last two days: playing Jenga. At first I played about a 100 games with him (okay, I’m exaggerating) then his dad played, too; and at that point, I was thinking of kidnapping poor little Jenga and holding it hostage, the ransom? Play any other game, please, any game—like scrabble—it comes with wood pieces, too, you know!!

But then I thought better of the sociopathic little game of mine because this boy is having much too much fun with Jenga (his newest best friend?) and why upset a happy boy. Instead, I should be (and am) the happiest mom right now. In the past he might not have played appropriately with Jenga, and made Jenga do things that Jenga just shouldn’t do. But he is playing the game, even on his own, quite well and, more importantly, he is having fun…and it’s age appropriate too! Yahoo!! It’s the little things in life, isn’t it? He is also getting good hand-eye coordination out of the deal, too—I must boast! Not that he needs better hand-eye coordination, given the fact that he is an expert (proud mom talk here) at video games. Games which cost 50 bucks to buy and only last one week or less before the boy beats the game (that means it’s over) and it goes—bye, bye— into gaming history and stored in the armoire for safe keeping. That armoire is banking some big bucks let me tell you!

So Jenga can stay—all good! Scrabble? I’m still working on it! Nick just can’t seem to get past the fact that the (also wooden) pieces have letters on them and that you make words? “That’s not a game, that’s work.” Yeah, nice try MOM! Like I invented scrabble or something.

As he's getting older... it's getting easier and better!! And the little things count so much more!

What We Need To Know and Teach Our Kids

I hope that you never have to meet abuse. Not only for yourself, but, especially, for your kids. I think there is nothing more hostile than abusing a child—physically and verbally, because there is no difference—one bruises the skin but they both bruise the spirit and the soul.

Abusing a child is cowardly; abusing an autistic child who cannot speak to defend him/herself is unconscionable.

Once upon a time, I didn’t know that my daughter’s bus driver was verbally abusing her. I didn’t see the warning signs—I should have.

She would get on the bus just so early that I thought her hesitations were more about the ungodly hour, not the ungodly monster driving the bus.

One day I drove to her school at the same time that I knew her bus would be arriving. I parked across the parking lot and watched her bus from afar. I rolled down my window and listened; not sure what I would be listening for, but I think there are just some parental instincts that just seem to take over. Did I actually think that I would hear or see something horrible? No! I really didn’t think I would. But when I heard the screaming coming from the bus and saw the driver hovering over Meghan, I became paralyzed.

My body pretty much just shut down for those few seconds; I couldn’t breathe; I couldn’t move; I just sat there for those brief seconds taking it all in: Stunned. Shocked. Distressed. All my fears were coming true; no matter how much time I had spent advocating, protecting, and fighting for her rights: my non-verbal child was being abused.

I got out of my car and walked over to the van and told my daughter to come out. I grabbed hold of her and hugged her (at that age, I could still pick her up and carry her) and told the bus driver what I had heard and seen—and told her exactly what I thought of her: I called her “an abuser,” and that she should look for another line of work.

I told everyone, from school personnel to the bus company, what I had witnessed: that the driver lost control and screamed in Meghan’s face to stay in her seat (even though the van was already parked) and, remarkable and unfortunately, no one “seemed” that surprised, and the bus company would simply replace Meghan’s driver—but not dismiss her from being a driver. (“No thank you, I’ll drive her!”)

Not long after that incident, another incident occurred at the same school. Another parent was walking down the hall with me after we had volunteered together in our children’s classroom—she had an autistic son. She looked at me as if she wanted to tell me something but was holding back, until she finally said: “I have to tell you something that I had witnessed.” She told me that a few days ago one of the aides was sitting outside the classroom with Meghan (Meghan was obviously non-compliant) and the aide said to her (and in front of Meghan), “Meghan is being a bitch today.”

Again, another moment added to my reservoir of pain. I could neither breathe nor move; as if I had just been punched in the stomach and I was bravely trying to recover. I thanked her for telling me and told her that it was the right thing for her to do; because, she told me that she was wavering on whether or not to even tell me. Interesting!! The next day I officially withdrew Meghan from that school, even though we had no other school to attend—at least at that moment. (Oddly enough, it was a school with a good reputation.) I told the school psychologist what I had heard and he was notably shocked and disgusted; but, to this day, all I know is that both the teacher (who was not talented either) and all the aides were demoted to a preschool class at the end of that school year. I know nothing else.

I know all too well about the realities of a non-verbal child, or an adult, becoming a victim of abuse (both verbally and physically) and it horrifies me (as it does you). And I just want to lock my daughter in her room and protect her forever—but I can't do that, now can I? It happens more than we think; in a lot of cases, it remains silent and unpunished.

http://groups.msn.com/TheAutismHomePage/autismandsexualissues.msnw

http://www.articlesbase.com/mental-health-articles/sexual-abuse-in-the-autistic-world-492820.html

Kids With Cell Phones Do The Darndest Things!!

Oh, boy. OH, BOY!! This is exactly what I said when I saw this one boy today. Now if this doesn’t scare you, I don’t know what will??

First of all, it was a beautiful, warm, sunny day today so we were hanging out at one of our favorite beaches. It’s a beach with an adventure walk and wooded trails that wind down to a boardwalk which spills out onto a beautiful, sandy beach. I took some photos of Nick. Climbed the rocks—lots of rocks on our beaches. Watched two scuba divers take to the ocean. Nice!! Relaxing!! Until we pulled out of the beach's country road and onto a much busier road and saw a sight that just stunned us.

We spotted a young boy riding his bike---on a busy road---traveling fast---while talking on his cell phone!!!!

Ugh!! Sure. We can all say that we are guilty of doing the very same thing while we’re driving. Some even admit to text messaging while driving! (How do you do that, by the way? Uh, never mind ... I don't even want to know!!)

But the "problem" is that it looks like our kids are watching, even the ones who are under the legal driving age! And since they all have cell phones, too?

This should scare you even more: This past study by University of Utah psychologists showed that motorist who talk (even on a hand-fee cell phone) are equal to those who drive drunk. As some of you have probably heard, as I have, through similar reports. So ...

I drove away thinking that I had just seen a drunken boy riding his bike---on a busy road---and riding against the traffic---but I guess that's what you do when you're drunk!!

Some Things In Life Should Remain A Mystery

Junior year Psychology class was one of many classes that I remember from High School. On one particularly interesting afternoon, the teacher told us: “These are the best years of your life, so enjoy them because after this--it’s over!” Not something that a psychology teacher should be telling young, impressionable 17 year olds who are neither wise nor emotionally mature enough to handle it.

One of the students, and a close friend of mine, looked at her incredulously and said, “Well then Mrs. T., I think we should just throw in the towel because if it gets any worse, then forget it!” I looked at Mrs. T. the way that I look at everyone who strikes my interest; I smiled at her and was eagerly waiting to hear how she was going to crawl herself out of the massive hole that she had notably dug herself in.

She stared at this student and made a sound that resembled a nervous laugh and fashioned, what seemed to be, a constipated-like smile, and proceeded to say:

“What I mean to say is that you should consider yourself lucky that you are living a charmed life right now; you are living in a nice, small town protected from the harsh cruelties and realities of life and attend a school with a wonderful reputation … ” (Note: memory may not be as good today as it was then, but this was pretty much the gist of her comments.)

It is interesting how I never forgot that moment and those words. It’s funny how some thing just stay with you—one of the powers of being a teacher, I guess—hear that all you teachers?

I remember this not only for her apparent misstep in trying to teach immature 17 year olds the true meaning of life and the burdens and responsibilities, therein—because let’s face it, if she hadn’t recovered from that little fiasco, then the headline in the morning paper could have read something like: Mrs. T’s 6th period psychology students found dead in murder suicide. Mrs. T. (Psychologist) can you explain this??

I remembered her words, now almost 25 years later, and thought about them often while I walked through the years of my life; through all of the ups and downs and the harsher discoveries that I had to face—and learn from. Looking back, I think she was right in some respects and wrong in others. But I do know what she was trying to teach us: that we needed to appreciate our “easy” teenage life (in retrospect)—for the short time that we still had them; but, sadly, that lesson was just too big for teenagers to handle—there are just some things in life that should remain a mystery.

I did see Mrs. T. again at a restaurant in my hometown a few years ago; she was a frail, older, grey-haired woman, and she was peacefully sipping her wine while staring out into the harbor. And when I was approaching her table I thought about reaching out to her and delicately touching her shoulder to say hello. I was certain that she would remember me, as I am certain that all teachers, likewise, remember their students; but as I approached her table I thought about what I would say to her. Do I tell her that I understood what she was trying to tell us that day in class—a day that maybe she, too, was going through a tough time in her own life; or do I say nothing more than a quick hello and leave my life a mystery—as some things just should be; or do I merely walk away without ever touching her shoulder or saying one word, and choose to be remembered as the happy, smiling girl who always enjoyed her 6th period psychology class.

So I walked away, as if I hadn’t seen her; but I duly noted her peaceful smile while she looked out into the harbor.

A High Tolerance For Pain

I have this one problem when I’m out shopping at the mall--and it’s not just the fact that I want to buy up an entire store, especial the Gap--and OMG, just love the new sweaters that they have out this fall, just love ‘em.

No, it’s the way parents behave with their children. Now I’m not trying to judge another mother. My goodness. I’m old enough and experienced enough to know that I wouldn’t even “go there;” I do know what it’s like to run around the mall with the little ones under foot, especially when the little ones are little tricksters and are into everything. Ever see the boys on Desperate Housewives? Well, that’s what my two were like: running around laughing their little heads off while mommy looked like she was having a seizure. Oh, the good old days!! I just have to laugh when I see some parents who only think that they’re in proverbial hell. A News Flash: they really have no idea how bad it could actually be, but I wouldn’t dare fill them in. No! Instead, I’ll just sit on the sidelines and smile.

I do agree that all moms can reach their boiling point. Everyone needs a break. No one can take care of children all day without help or a break; and every parent needs to vent once in a while, it’s only human. So I can sympathize with every parent, with every child.

I just think that because I had the “extra” benefit of being “broken in” by my (especially) difficult daughter, that I have a higher tolerance for the pain. For instance, this one mother was yelling at her little boy for taking off his shoe in Target and she acted like it was the end of the world, as she knew it. The boy was, otherwise, good and quiet and followed his mother around like clockwork. And the shoe thing? Well he was able to put it back on as fast as he took it off. No problem. But Mommy Dearest could have chewed his head off.

Looking back 10 years ago (or even sometimes in present day—I dare you to read my Naked Girl post) my little trip to Target would look like this:

Daughter runs off, mommy chases her down as if playing a game of touch football.
Son screams after mommy and daughter, “Why are you running away? Wait, wait, wait…”
Daughter laughs hysterically and takes off her shoes.
Mommy struggles to put said shoes back on--every 10 seconds
Daughter spots a baby with a bottle and yanks it out of his face and starts sucking on it herself.
Mommy forces bottle away from daughter, but daughter has the last laugh and chews off the nipple with one destructive bite.
Store is horrified and wishes we would just go away.
Daughter decides she’s had enough of Target and takes off her clothes—buck naked.
Mommy freaks out and forces daughter’s clothes back on.
Daughter laughs hysterically, again, and kicks mommy because it’s fun.
Son joins in because it looks fun.
Mommy disciplines kids.
Son takes a temper tantrum for being disciplined and starts yelling: “I hate you.”
Mommy forgets why she even had to go to Target and starts chanting: go to your happy place, go to your happy place …while rushing out of the store before Social Services shows up.

Hey, just another day in the life of a mom with autistic kids! ;)

The Power of Raising Special Kids

One day a friend told me that she was not materialistic. After sucking my left lung back in from laughing so hard, I said, facetiously, “Well, let’s see:

You have a 4-carrot diamond ring on your left hand because the 2-carrot one wasn’t big enough…
You drive a car that rhymes with “bummer…”
You know the staff at Coach "personally," as you do the customers (kiss, kiss left to right...)
You tell the world that you like, what’s that word: “Bling”

Mmmm, you’re right, can’t see why you would be? ;)”

She takes this personally. But I don’t think there’s anything wrong with materialism; it means that you like “things” and if you can afford them, then lucky you. She’s a great mother and a generous friend, so who cares.

I bring this up because once a long time ago, I, too, liked “things” (and still do) but the only difference between me then and me now is that I'm not judging myself or competing with my neighbors, as I once did. I no longer care about having a Volvo in my driveway, or living in a Mcmansion. The change: my kids’ diagnosis.

It's very sobering to find out that your children have developmental problems and working to help them is all you can imagine “having” and “doing” in your life. I remember this feeling clearly, it was an eye opener and a relief, as strange as that sounds.

I was no longer that person who needed things to feel better about herself; instead, I needed to help my children live a functional life, and had a life’s work ahead of me. It wasn’t the fact that I no longer had time for the mere silliness of “keeping up with the Joneses,” as it were, but it was more of the fact that I started viewing it as silliness. Mind you, that before my kids’ diagnosis--and this life altering view, I was making it my life’s mission to move on and UP. This new revelation of mine also came with the loss of some of my friends; people who live in that idea of a “perfect world” or fantasy of one, no longer find YOU attractive. And YOU no longer find them attractive, either.

It was very liberating to lose these friends. I was no longer fighting with them for a place at the country club; but, instead, I was fighting for my children futures. A real dichotomy, now isn’t it?

The most liberating part of leaving behind this “past life” mentality was that I found myself on the luckier side of this dichotomy, like it was a belated gift of understanding what life was really about—and glad that I was wise enough to accept it. Because I will tell you, the other life has a powerful way of sucking you right in. But the power of special needs kids is so much stronger and richer, and I think happier, too.

Family and Friends and Your Autistic Kids

The worst part about receiving my daughter’s autism diagnosis wasn’t the initial diagnosis (as one would think, and as I did, too) it was, instead, dealing with family members and close friends about autism. Some of these people simply ignored Meghan as if she wasn’t even in the room; instead, they chose to pay attention to the more “cunning” and “normal” kids in the room. It was one thing to feel like lepers to the people of the community (like at the playgrounds) but to get shunned by people in your own family (tribe) and who are supposed to care about you and your kids? Well, it was like hearing the diagnosis over and over again—like for the very first time; it was painful.

One day I cried at a relative's home, and had to leave early because I was so overwrought with exhaustion from not only keeping Meghan safe but from breaking things and getting into trouble (it was like taking her into a china shop) and people were not only ignoring her, but no one was offering to help me distract her from getting into “delicate” things or personal things or walking into rooms that we were told were off limits: yeah right, that person doesn’t have kids! Even at three years old, if she was told not to do something, she would beat you down until she did.

So I left early and left crying. And no one walked me out or offered me help (or sympathy) or cared. My mother yelled out after me from the house: “Are you alright?” “No! No mom, I’m not alright” was my silent remark. (But at least she cared to ask!)

I kind of felt like they were all telling me: “well you made your bed, now lie in it!” As if I had done something wrong? Having an autistic child was my wrongdoing, I guess?

The only explanation I can give for this “treatment” was that they didn’t know what to say, how to react, or what do for me—dumbfounded, perhaps (or just dumb), so the best they could do—was ignore me. That’s the best that I can come up with to explain it: the family that keeps their blinders on. What really gets me, though, is that they cared enough about the other young kids in the room to keep them busy and occupied and offered to help them and their mommies while they ate their food from their laps. I didn’t get help. I didn’t get food. And if I did, I didn’t enjoy it.

Like I said, the hardest part wasn’t the initial diagnosis, it was the treatment after…

Can anyone relate to either side?

Is My Car A Lemon ?

Is my car a lemon or am I just a screwee??

I have a 2004 Nissan Quest minivan (first year new model) and in four years it has needed more work than it should have OR is it just me? It also has 75,000 miles:

2 Alternator replacements: ----$700 for one, other was on warranty
All four brakes: -----$1200
Wheel Bearings: -----$ ? I must have blocked it out!!
Going to a bar after costly repairs---- oh, priceless!!

…and now I hear a click, click, clicking sound coming from the front left tire, just one month after the 700 repair!! So back to the shop for what sounds like more work = more money, and where I’ll be spending the majority of my day = more money.

These troubles have me singing around the house: money, money, money …it’s a rich man’s world ...

The last car I owned (a Jeep Cherokee) didn’t need any work until about the 120,000-mile mark or 6 years into owning the car.

So this is why I’m thinking that I got screwed. And the Nissan was thousands of dollars more expensive to buy. I think I’ll be going back to a Jeep the next time.

What do you think? Anyone own a Nissan?

When Perceptions Change

It’s funny how society relates to one another. Just walking about in a city—any city—let’s choose the Northeast, I don’t know why? ;) We walk to work, jump the subway, hail a cab, whatever it takes to get us from A to B and with acceptance and some acknowledgement that we are not alone in the world and that we are fighting against the same crowd of people just like you and me, everyday…and without a mention of a “Hello” or eye contact. I mean, God forbid we linger too long staring at someone—it could lead to some scary consequences. And if we did start making conversation with a complete stranger—then we’re just “weirdos” and think oooh get away from him/her. We simply tolerate our fellow man while we coexist, No? I guess that’s just the cynics approach to society, not that I'm a cynic, but if I were, that would be my answer.

Funny how our autistic kids are knocked for possessing some of these “antisocial” functions that we come to accept as normal in daily life. And are condemned if we don’t.

One day, many years ago, I was walking through the streets of Boston as a young and naïve 20 year old. I was new to the hustle and bustle and harsher mentality of the working city (I grew up in its suburbs that was as protective of their young as the grizzly bear) and was new to its less than attractive inner social workings. I had just started a new job to pay for college and I just so happened to smile at a homeless man standing on the sidewalk holding out a cup for spare change and he said something very horrible to me (I won’t repeat it…unless, of course, you want me to? Okay, it’s more fun to hear the juicy stuff: he said “Don’t smile at me you stupid lesbian bitch”)—to me, a young, nice, sweet girl whose only crime was acknowledging him as a person instead of passing him by like everyone else did. I was walking to the coffee shop where I would grab a coffee, muffin and spare change for the homeless man.

Well I didn’t offer him my change instead I told him "FU" (and it was my first experience, ever, saying that to someone--and it was upsetting--but I felt the need to defend myself).

Funny how a nice, innocent, naive girl can become a totally different person in one fell swoop, and, thus, was my “christening” into the adult “real” world.

This is not much different than the story of my daughter who is now living at a residential school. It was not like we were biding our time with her and just getting through the days and the years. She wasn’t always what we would call “residential material.” Sure, we had our struggles—me, especially—being that I was home with her and her primary caregiver. But we would and could ride out the problems like every other parent does—autism just presents more challenges and frustrations than those of a typical child. In fact, Meghan was the oldest student in her class with her severity, and appeared to be a student who wouldn’t need to attend a residential school. So things were working—not golden—but functioning, and then one day my perception changed—as it did when I was 20 and welcomed into the real world.

Maybe it was because she’s so smart and thought she could outsmart her mom. Maybe because she knew that she was bigger than me and could pick a fight and win. Maybe it was teenage hormones—certainly that played a big part. Perhaps it was all of these things combined—like the perfect storm. It’s not uncommon for this to happen, and it usually does.

But it felt the same as it did twenty years ago, in Boston, with that homeless man; it’s just so shocking that it knocks you right over. And as a cynic might say: that’s life.

Mother Abandons Children--one is autistic

It amazes me that a mother could abandon her own children. As in this story by ABC News. One of her children has autism (mild autism) and she left this boy and her other four children in the care of their stepfather and her eldest daughter who was only 14. And if abandonment wasn't bad enough, she also left them penniless.

I have trouble adjusting to the fact that I had to send one of my autistic kids to a residential school; in some way, it felt as though I, too, was abandoning my daughter—one of the emotional challenges to a decision like this, even though it’s in no way the same, but, still, this story hits home extra hard. I just can’t understand how someone who had so many children, just picks up and leaves—walks out. How come she couldn’t or didn’t realize just how lucky she was and that she should be thankful that she could, for one thing, even have children, and healthy children too? And that one of the children has a milder form of autism—a child who especially needed his mother. How could she live with herself is my question?

This story just makes me want to stop and hug my kids!

The video of this story will break your heart. There is also a link to donations that can be made on behalf of the family (kids).

By the way, the missing mother was found by her eldest daughter (aka actual “mom” who is raising her sibling) via the mother’s website: she was found living by a new name and is a successful author living in London. She should be blacklisted and boycotted!

For Those in Southern CA: Ride for a Cure

Past Ride Participants, Do you remember the cheers of the crowd? Do you remember how good it felt to be a part of something extraordinary with other dedicated riders? Do you remember doing something you love and have it affect millions of people? Once again, here’s your chance to relive those moments as Autism Speaks’ presents ING DIRECT Ride Now Southern California 2008. With much gratitude, I want to thank you for your continual participation and support of the Southern California Ride. As we’re quickly approaching this 4th annual event, I would like to personally invite you to join us as we ride for a cure!This year's Ride will take place on October 5th, and will have both North & South starting points converging in the middle for a great day of fun and celebration.North Starting Point: Bartels' Harley-Davidson, Marina Del ReyRegistration Opens: 9:00am to 10:30amSouth Starting Point: Orange County Harley-Davidson/Buell, IrvineRegistration Opens: 9:30am to 11:00amAfter-Party: Long Beach Marina$30 Registration fee includes admission to the after-party, food, commemorative T-shirt, pin and bandana.We look forward to seeing you on October 5, 2008!For more information and to register, visit Autism Speaks' ING DIRECT Ride Now Southern California 2008Questions? Want to help promote? Contact:bhan@autismspeaks.org or 323-297-4771

A Meghan Update... her residential school progress

A Meghan update:

We saw her last week, as we do every week. And she looked great! She just has this content way about her; she’s comfortable with herself and her life. I’m so grateful. Not just for what the school and teachers do, and do for every child who is welcomed through their doors, but I’m so grateful that there was a solution for Meghan and we had finally found it. Albeit, a harder solution for us, her parents, but we can't be selfish—we didn’t have kids to be selfish and hold them back from thriving—we had kids to help them blossom and grow—and then send them off to find their own life. Even if it doesn’t sit too well for two parents who will love her more than anyone else in this world.

So, Meghan seems content and at peace, that’s what it seems to us. (Does she still need me?) An observation by two people who only see her once a week, but that's almost a better thing: two virtual outsiders (as strange as that sounds) can see through the glare and see what’s really there by not seeing her everyday.

It won’t be like this forever, she will start coming home every other weekend and hopefully it will be a success. I would hate to think that we could screw this up and wreck her progress or her continuity—and that she doesn’t mind commuting the 1.5 hour trip, each way, twice a month, which I think is a good schedule for all of us.

It’s definitely a step-by-step process and we take it one day at a time… and, demonstrably, that is just what we have to do.

One of her favorite thing to do at the (her) house is swinging on the tire swing; she swings high and wide. She also loves her schoolwork and does it for a free time activity, even; she is also using all of her communication books effectively and appropriately (she has two books jammed packed with nouns, verbs, and adjectives, and one communication output device).

She started her swimming classes, for those of you who are not familiar with her school, there is a huge Olympic style pool designed specifically with special needs kids in mind. She loves it. She swims twice a week. And the treadmill, too! Who would have thought that she loves the treadmill? She's on it every chance she can get at the schools gym and house. (She never liked it at home!!) Just more proof that she is coming into her own!

More and more that I think about it, this school is a luxury—one would gather that from its hefty price tag—and at this price—I would expect a hot tub, sauna, and cabana boy ;) but these girl are only 13, so luxury for them entails: an environment of several trained teachers at their disposal for help , guidance, and activities … it’s like having a bunch of moms (or big sisters) who are guaranteed to never get over-tired or frustrated and there’s always at least one mom who will like a particular activity at any given time. Some of the “moms” are good cooks; others like to shop; and some others are just plain playful—how ideal! Who needs just one mom, when you can have a house full of moms.

Crazy Times Call For Desperate Measures

Okay, I will admit to doing something that was very "desperate," "impulsive" and "crazy." (Shhh don’t tell anyone!) It was many years ago and the craziness came from being the mother of 2 autistic kids. For those of you who aren't that familiar with raising autistic children, the craziness can be described as this:

One day you are traveling down a normal road which we will call “Typical Highway.” Everyone knows this road, and most of us even grew up traveling this road. But then, one day, you just happen to be that 1 person out of 150 to hit a strange bump in the road and veer off onto another road called “Autism Path,” and no matter what kind of funky GPS system you happen to own, you cannot get off this road and back onto Typical Way--believe me, you try! So you take the road at lot less traveled and pray that you come out on the other side or back on Typical Way--or at least you pray that "someday" you do.

The only problem with Autism Path is that it’s very bumpy and costly and it’s a road that you've never taken or even seen before--and lonely, all of your friends are still on Typical Way and making it a lot easier and faster--and happier than you!


I also mentioned "impulsivity" which comes from being so very "desperate" that you actually pick up the phone and dial the number of an "on-the-web" psychic to tell you how it’s gonna be and what your future holds … because, you see, I’ve never taken Autism Path before and it’s dark and lonely and scary, and it can make you do crazy things like pick up the phone and dial a psychic.

She swiped my credit card (yes, that’s right, I gave her my card number) and she read my palm--just minus my palm. She called it ((vibes)) and told me all about myself in one minute flat. Then I asked her: “What about my kids? What do you see!?” And she said: “I don’t see anything" but then told me for another swipe of my credit card and 10 more dollars, she would see what she could do!

Huh!

So I was actually thinking …

Still thinking!

More thinking!

“No!” I finally said, sounding dispirited (damn it!!)

Then I hung up.

Ughhhh!


Today, I am more familiar with Autism Path but I still don’t know where it’s going to lead me or where I (we) will end up… but I think I see some light at the end, somewhere. For some of you still miles behind me, I will let you know!

Those in the Boston area:

For those in the Boston area, from Autism Speaks.

Greater Boston Walk Now for Autism 2008Sunday, October 19, 2008Suffolk Downs, East Boston, MA Just 6 weeks until we join together at Suffolk Downs Race Track for the Greater Boston Walk Now for Autism. If you have not yet registered for the big event, please go to www.walknowforautism.org/greaterboston. Registration/Check-in is at 9 am and the Walk will begin at 10:30 am. Registering prior to the Walk means that you will receive very helpful materials and full support from our staff and also helps us to plan for enough food and supplies for everyone. You are also eligible to win fantastic prizes at the Walk – IF you have registered by October 15th.

Back to School - A new School Community Tool Kit is availableYour child’s school is the perfect place to spread the word about the Walk. Ask the special education director if you may send home a Walk brochure with each student. Ask teachers to form their own Walk team and represent the school’s pride. Raise awareness by directing school staff to the new School Community Tool Kit which can be easily downloaded at: http://www.autismspeaks.org/community/family_services/school_kit.php.
With the support of the school community – the teachers, administrators, aides, office staff, bus drivers, nurses, custodians, peers and parents -- students with autism can make great strides and become valued members of a student body.Visit www.autismspeaks.org and see what else is new. There are so many wonderful resources, articles, breaking news information and more. Be sure to sign up for E-Speaks, the Autism Speaks electronic newsletter.

Going Broke Raising Special Needs Kids?

There was some mention on another blog about how people are affording expensive therapies for their special needs kids. My reply was that I enrolled both my kids in the Mass Health insurance program because they are disabled. And for about 100.00 per month, I was able to afford speech and OT therapy—for both my kids—a couple of times per week at a local rehab. hospital. This was in addition to their school’s therapy time. I also found a fund, through my local Arc, offered for residents living on the south shore of Boston, to be reimbursed for therapy equipment or social skills classes (as I did for my kids) and the like. Meghan’s school (residential school) is paid for by our school system—and a good thing, too, because there was no way that I could afford the school on our own even with two incomes (a 255,000 per year price tag).

My daughter is also a clothes ripper—as some may know from one of my posts. So I was relieved that Steve and Barry’s had affordable clothes for one ripper of a girl, but, sadly, they are going out of business. I’m crushed, now I have to got back to Old Navy and pay double…

Some other people mentioned do-it-yourself therapies, by learning these skills and helping their own kids.

How do you do it?

The Dark Night (Ah, Not the Movie) and a Poem

Someone had asked me about the ”dark,” you know, the darker side, and if I had ever had those moments? And I’m not talking about Batman—even though the Dark Knight was pretty dark—and violent. And that joker—wow, he was one scary SOB.

No, I’m talking about the other dark, the kind that most people don’t want to hear about, because, sadly, it’s too depressing. It’s not inspirational; it’s not motivational; it’s not uplifting, so why, why talk about the sad stuff in a world that needs more of the happy-ever-after. But it’s not reality; people do want to know that it’s okay to think darker thoughts, and that they’re not alone—it’s human, is it not? When I had written some poems, I needed to write about the dark stuff, too. It was my outlet; the only way I could acknowledge those thoughts and relate them to my anger, because I certainly didn’t want to take it out on my kids by being angry with them—it wasn’t their fault.

One day I was driving my car to nowhere trying to keep a disconnected, unruly, autistic child entertained, while suffering from sheer exhaustion. She had given up naps and from the sounds of the backseat seat belt, she had found a way to give up seat belts, too—I knew that day was coming! So my dark side brought me to a place—a vision—and thoughts of my only way out: driving into a tree. She and me and one tree. If she and I were gone, then no burdens would be placed on my sister, my mother, my husband, or my brother. Because, frankly, this was the other side of hell—raising a child who I thought was the devil herself … and I had the rest of my life to do it, too.

I kept hearing from people in my life: “I wouldn’t do it; I couldn’t do it; I don’t know how you do it,” and it didn’t make it any easier. These people were telling me that I got cheated and had a crummy life—to boot. No one wants to hear that you got screwed and everyone else got healthy, functioning, normal babies—whom they enjoyed! What a hard pill that was to swallow. Even my elderly neighbor (who had no life) told me that I had no life … HA! That threw me over the edge and into a crying fit. That was all it took to realize: people pitied me. And then one day a “friend” said to me: no one would ever be jealous of you, just look at your kids.” As amazing as that was to hear. And down the toilet went another friend. There was a lot of that going around when your life meets a challenge.

But what stopped me from searching for that big, bold, preferably, beautiful tree (okay, I was selfish) was my son, and who was the only bright star in my life—that’s all it takes, right? —a bright star shining on a darker day really does light your way; keeps you holding on—pressing forward—and realizing that the dark wasn’t always so dark. I could and would never want to leave him because he needed me, and I needed him. He was my lifeline, and an adorable safety net when I would fall into “the dark.”

One of my earliest poems (a dark side) was just after I received my son’s diagnosis and, mind you, I had known Meghan was autistic before I knew Nick was, because she was so much more severe, so I was prepared. But my son was a different story.


"Children are a God-send"

As if it wasn’t hard enough the first time;
Today it seemed easier the first time:
Facts were presented;
Books were read;
Information was exchanged:
For heartfelt reasons and for selfish ones alike.

This time was going to be harder—
It was my other child,
The one we thought would be okay—
our survivor.
The one full of personality, ability, curiosity.
Oh, how does one take the news?

My mother called everyday
Same time. Same ring.
Her unusual tone.
It was the way she would say my name:
The fake, upbeat rhythm of her voice;
The drumming for frivolous information.

I knew what she wondered:
Was I crying?
Would I kill myself?
Did she really think that she could heal me?
Bring back my happy spirit
As if I was some overjoyed creature

Ready to play with anything
thrown my way.
The lies I would tell her
Just to get her off the phone.
I hated everyone,
Especially those with normal children.

I threw away already addressed
and stamped
Thank you cards from a birthday party given for him
Earlier that week.
I did not feel thankful.

Then a friend called to read me a poem.
It told me that God sent these children to me
And read all the reasons why. It blamed:
My happy disposition to love;
My inner strength to guide;
My patience to teach;

And the right amount of selfishness
to keep me sane.
I’m a saint dontcha know--And twice over!
I smiled up to the heaven
to give my regards to my God:
Fuck you, I‘ll go to hell.

A Son Remembers ...

My son came into my room and jumped on my bed with me and we watched the story about Obama. What is intriguing about him (my son that is) is that he has become very political. Here is a boy who people (school) underestimate his intelligence as if he is his diagnosis (label). Funny thing about these teachers and aides is that I think Nick is smarter than some of them.

He not only knows a little about Obama and McCain, too, for that matter, but one day I was watching some old presidential footage dated over 40 years ago. He walked in the room and I told him that I was watching JFK making a speech and he said: "NO, that’s not JFK, that’s John F. Kennedy, MOM." (Oh, happy days!!)

Then the next footage came on and he told me that it was Robert Kennedy. (Ah, more happy days!!)

(Wow, you impress me Nick!—smile, smile)

Then asked me why it was in black and white: boy did I feel old. Nick’s not only in the generation of color television, but High Definition, color television …

(Oh, you depress me Nick—sigh, sigh)

Then he proceeded to tell me all about what happened to “them” using the names:

"Lee Harvey Oswald, Sirhan Sirhan, James Earl Ray"

(Oh, you scare me, Nick!)

So this is why you like politics, eh? It’s not about what they stand for, but, instead it’s about who shot them dead and why? I wonder if I told him who shot John Lennon, then would he be a newfound Beatles fan?

But I digressed, so we were hanging out and chatting and then I was thinking about when I used to sing him a lullaby or “his song” when he was a baby, toddler, and little boy: The song was “Somewhere Over The Rainbow;” and "The Sun Will Come Out Tomorrow" was my song for Meghan (because she was colicky).

So I decided (some 10 years later) that I would sing that song: Somewhere Over The Rainbow” as a silly and kind of goofy, fun thing to do, and while he snuggled next to me (mind you I cannot hold a tune—I am totally and painfully tone deaf) and when I did start singing “his song” he hid his face under the covers. But not in a bad way, he was snuggling in while hiding and I knew that he was reminded of that old feeling of comfort, love, and safety; and enjoying those comforting few moments … just minus the bottle.

It was a mother and son moment, for sure. And moments like these will not be forgotten—as demonstrated. So go ahead and sing that lullaby to your 14, 15 and 20 years old, too--what the heck … they’ll love it just that same; a reminder of a safe place in a world full of Lee Harvey Oswalds, Sirhan Sirhans, and James Earl Rays.

20 Minutes of the Unthinkable and Life-Learned Lesson for a Mom

One should never know how it feels to lose a child, even if it’s only for a few minutes, but your heart is worn on your sleeve when you are faced with the unfortunate and life altering opportunity of finding out.

I had once posted about the day that Meghan ran away from me and I had lost sight of her due to an obscuring partial fence, and I didn’t know which direction she ran off to. Well, I thought I knew, actually, but when I got to that location, she was nowhere to be found.

An enormous weight of dread and a flood of emotion crashed over me—this is the best way to describe the feeling. An overwhelming and surreal wave of “the unthinkable” came to light and I wished more than anything that I could actually go back and delete, delete, delete those last few written moments of my life and be where we were three minutes ago—safe.

This was my opportunity (ironic gift) to learn what I would be thinking at a time of realizing that my child was missing--and a child that I did not think could find her way back home, and that there were 9 ponds and plenty of woods in the area of which I lived. As I was running back home with an 8-year old autistic boy in tow, I thought about my lost little 7 year old, not only as a child who was profoundly autistic and who entailed challenges, but as my “girl” who I appreciated, truly appreciated and forgot that I did.

I thought about the enormous love that I had for her; about her huge, happy, photogenic smile; her sky-blue eyes and happy disposition that made her a photographers dream. And that this was my punishment for forgetting that she possessed qualities that so many could only wish for. I was being punished for actually allowing autism, and of the struggles that it entailed, to outweigh the promising qualities, skills and personality that she possessed—the girl underneath the autism.

I was thinking and praying (and I’m not the praying kind) that if I could get another chance that I would appreciate her more for the gifts that she brought into our life; and that I would love her more for the happy, strong minded and creative child that she was—and smart—I mean she found a way to outsmart and lose one sorry and bewildered mom.

How strange it was to use autism and appreciate in the same sentence—when do you see that or say that? But it proved to be very true at a moment of uncertainty. Actually, I was thinking more about "appreciated" and forgot all about "the autism" for those uncertain 20 minutes of wondering if I would ever get the chance to prove it.

Asperger's Syndrome and Hot Buttons

Oh, I was at the hair cutting place (Snip its) with Nick getting his hair cut today and the Hair Cut Lady (as Nick calls her) was going on and on about how he has gotten sooo tall … and I quickly interjected (quick but casual, as to not scare the poor woman) and said very politely, “Oh, he doesn’t like hearing that, he wants to be young and small” (so kindly shut the hell up—please). (You may want to read my "Dreams of Jail" post before this one to understand the horror that could ensue … but let’s just say it’s a real hot button.) And, as luck would have it, she didn’t get the hint, or the message, or the nature of autism. Instead she went on:

"What grade are you in now, Nick"
"8th"
"Oh, wow your getting so OLD and sooo tall for your age … I still can't believe how TALL you’re getting. " Then she turns to me:
"Mom how do you feel that he’s sooo much BIGGER than you?"

Did she see my snarl?

While I was calmly sipping my Starbucks coffee and thinking: oh, for the love of God, shut the f… up!! And enjoying my coffee like it was my last meal, because I knew all too well that I would be crucified during the car ride home.

And I was right …

He went on and on and on … my lovely car ride home was supposed to involve me sipping my yummy coffee; humming to the music of my favorite stations; while driving with my windows rolled down and enjoying the last of the summer's afternoon air…

Alas, that is not how it went, instead I did my best to keep him calm (sweating) while he started kicking and punching the dashboard and seat of the front seat of the car. And then realizing that all of his teachers must be calling him a "big boy" at school and “older” and “taller,” and doing this everyday, too. And being that he is in the 8th grade and among the oldest in middle school, that he must be the tallest kid in his class, or close to it, so they're (kindly) acknowledging his height and it’s becoming a theme. All I would need is for him to be awarded “Most Grown During Summer Vacation” for it to be his banner year!

I will have no choice but to send the teacher an e-mail titled: “Red Alert” on Monday—first thing.

Fearless Focus: Anorexia and Complexities of Autism Diagnosis

I encourage other fearless topics not just special needs so I wanted to talk about a disorder that I know about almost as well. It’s Anorexia.

My sister developed the (now well known) eating disorder over 20 years ago (when it wasn’t so well known) and when I was only 16.

She went away to college and came back skinny. Not just skinny, very skinny. My parents were worried and took her to the doctor. Unfortunately, it was only our family pediatrician and he should have had her be seen by a specialist (or a good shrink) but, instead, he laughed it off, telling my parents that it was just the result of a hard-working- perfectionistic-college-student—eat little, work harder; and then he amused them with a story about “the good old days” when he was in college and how this, too, happened to him …

What, Dr. Hazen, “emaciated” is normal?

So she went back to her “anorexic” life and even though I was only 17, I knew that this was not normal and that this girl was in trouble.

Some of my friends would even ask, “Oh my God, Holly, is she anorexic? I felt horrible. But deemed powerless. I would even visit her at school and “see” that she was eating next to nothing; it was also a manipulation game for her: telling me that "we" were the healthy ones and that everyone else had an “over-eating” disorder. And all the while fitting into smaller and smaller clothing—I mean she was shopping in the junior section of Macy’s, no longer fitting into the petite adult stuff.

So the emaciation of my sister—while I watched closely—wasn’t a sight to see, but a tragedy.

Then one day, and perhaps the cry for help, she and I were shopping together and trying on clothes and she came into my fitting room (okay, odd, but we were sisters, so not that odd, right? —well that’s what I was thinking…) and then I saw what she actually looked like underneath her clothes (mind you she would wear layers and wool in the heat of the summer) and what she had become since those lost few years after Dr. Hazen’s visit:

Disturbing!

To make a longer story shorter, my sister eventually got the help that she so desperately needed through a renowned Massachusetts psychiatric hospital. And, today, she’s still struggling with her disorder, depression and anxiety—everyday of her life.

She now has two children, but her pregnancies were not comfortable; she had lost so much valuable body fat, that pregnancy was proven painful. But I always think that she was lucky that she could even become pregnant, and twice. So lucky in some ways…

But the problems with having a sister who was no longer emotionally available to me surfaced when my children were diagnosed with autism—and simultaneously, as it were, and that I could barely breathe. I needed my older sister to be there for me: to guide and encourage me with wiser sisterly love. But she was no more emotionally available to me than my own children were. She still needed me to help her with her own needs of encouragement to get through the day. Did she not think that I needed a shoulder to cry on? And that this was not just a simple bump in the road and that I would or could bounce right back from, and then be there for her, once again, as her source of inspiration, encouragement, power. How could I? I was drained!

How could I help illuminate a dimming star when mine forgot how to shine?

So we drifted apart, little by little …and I learned through the years not to expect anything from her—as much as a sister might expect from an older sister—and at the same time, to expect the worst.

More about Anorexia.

More on Sarah Palin and Her "Top Secret" Pregnancy

I’ve written about communication dysfunction before but this takes the cake for me folks.

First off, I like Sarah Palin very much even though we do not share the same political views. I think that she and Hilary Clinton are revolutionary and it's about time that more women are seeking the White House; even though Palin has taken many unnecessary “hits” from people in both parties for her personal and political life. But it should come as no surprise since all politicians who are running for higher office are under the same media microscope and political slander from the opposing party by dredging up anything to throw off the opposition—hey, it makes for good politics and for good debates. Look at her attacks on Obama last night—it’s the nature of the game.

I had questioned (in a previous post) about her readiness for the V.P. chair. I am not stating that I’m sexist by any means, but concerned that their family has got a lot on their own plate to be taking care of the “plates” of the rest of the country.

I’m questioning the latest reports that Palin was pregnant and didn’t let anyone else in on the “secret” including her own 4 children. It’s one thing to hide her pregnancy from her other fellow Alaskans—which came as a shock to them, but to not let her own children know about the newest little “bundle of joy,” and that her children reported that they didn’t even know that he had Down syndrome until after the birth, a fact that even Palin and her husband had known early on in her “top secret” pregnancy.

It’s just a little off-putting to me, that’s all. I mean how is she expected to help unite the country as “one” when she can’t even unite her own family as “one.” It seems that communication is lacking and the dysfunction is running as fast as the gossip.

What's more important: your job or your family; the best interest of your country or your own family?

Autism and Vaccine; Increased Disease and Diagnosis

Researchers are trying to put the vaccine link to autism to its final resting place, as reported by ABC News; but The National Autism Association (NAA) released a statement today calling the study "flawed" and saying that it "fell short of what the public needs to prove safety of the MMR vaccine." Which is no surprise for me or for others who have kept a close watch on autism for the last 13 years.

The NAA also stated that "This is exactly the type of study we've come to expect from the CDC [Centers for Disease Control and Prevention]"

This will be an ongoing debate for years to come, as it already has been.

My only concern is that we are going to see an increase in diseases, such as the measles, as we already have because people are afraid to vaccinate their child, and a whole new epidemic and set of problems will be presented.

An increase in preventable illnesses and death is not the answer.

Do I think that vaccines caused my children's autism? I really don't know because I haven't seen enough "proof" from either side, so the jury is still out for me. But I do know this one fact: there has been an increase in the diagnosis of autism and those who fall under the autism spectrum "umbrella." Take for example my own brother: he was not diagnosed with ADD/ADHD until he was an adult and is now being treated for the disorder--comes 30 years too late, the emotional damage had been done; but more and more "adults " are being evaluated for disorders that had once left them mystified as a child--and a revelation and puzzle-fitting resolution for these adults. There are still some other "adults" in my life who I'd like to have evaluated and diagnosed as well--but we could do this all day. So the diagnosis of these disorders has increased.

Education has improved twofold. I mean how many times have "you" (someone who knows a thing or two about autism and related disorders) have actually walked around "diagnosing" people by saying: "Oh yeah, he has autism and doesn't know it" (to ourselves of course). Because, by now, we are the educated experts.

Visions of Sugarplums Dancing in my Head, Not Jail

I just remembered that I had a dream last night that my son, Nick, was in jail--and at 14, too. Oh, Geeeez!! Please don’t tell me that I’m a fortune-teller and didn’t know it and that my visions come to me in my sleep!!

What was strange about this dream—as all dream usually are—but are also an outlet to our subconscious and psychological state of mind—as we know. In this dream I was in jail with him, too; and so was Jodi Foster, for that matter. Weird! But we were counting the days until Nick was released and that I was praying (and protecting) that he wouldn’t do anything to ruin his chances of ever seeing “the outside” again. It was that same usual feeling of worry that I would normally have with raising a son with AS and holding my breathe that everything goes his way, and that no one pushes his (hot) buttons for fear of a “melt down” (And in this case: more jail time.)

I think this fear comes from being with friends, family, new play date hosts, or witnesses of any kind; and that someone makes the mistake of telling Nick that he is “Growing up” or “Wow, you’ve grown” or God forbid telling him that he’s becoming a man—Yikes! (He’s 14 and he still tells people that he’s 12, or 11 if he can push it!) It’s a hot button for sure—so you’d better watch out!! And when this unfortunate person tells him such a (dreadful) thing as that, then he can become very upset. In the past it was like watching a crime scene unfold: He would get so red in the face and I could tell that he was gonna blow if I didn’t get him out, and out fast…or switch the subject very quickly so that maybe Nick didn’t notice, hear, or simply forget what they had said. And if he did hear (and didn’t forget) and that I’m just plum out of luck and he doesn’t take it well (80/20% chance and against me), then what could happen next is not pretty and I warn you NOW because he could say: The F-word. Yes, it’s happened—twice, as I remember—once with a nice play date mom, all dressed in her nice summer whites, hair bonnet and pearls… Just kidding! But she might as well have been; and the other time was with my mother. (Aahh!) Talk about horror!!

Now I’m not a saint of a mother but I don’t say that word around my son, unless, of course, something dreadful is about to take place, like, for example: almost hitting a deer on the road. I mean what do you say when you swerve to avoid hitting one: “Oh Gosh Darn a deer,” or “Oh Shoot a deer”—NO, you say: “Oh, F… and brace yourself for bloody impact. I live in Plymouth—there are lots of deer here!

So there it is! I took the stand and told the truth, the whole truth and nothing but the truth … and admitted that my son is in “dreamland-juvenile-jail”—at least I hope it’s the juvenile kind—I mean just for saying the f-word in “good company,” I think they’d go easy on the poor kid with ASD, his mom and Jodi Foster, too? NO?

Why Watch a Soap Opera when the Palin Story is On?

I noticed some moms, through other mom blogs, are having trouble believing or accepting that Sarah Palin can handle the job as Vice President given that she has five kids: one going off to Iraq—emotionally I don’t know how she’s handling that; the next eldest (teen) is pregnant, this has got to be a blow for the family and for the conservative message of “family values” and not to mention the boyfriend (aka father to be) who seems scared sh**less to me or is that just my opinion? Her other kids are still very young; and her youngest, Trig, we all know has special needs and is only 4 months old, and that Palin actually went back to work after only 3 days of giving birth—Wow!

This is one mom (that scares the hell out of me) and who has got a full load already. And I’m not so sure she is emotionally ready to be the second highest in command—I’m wondering when on her calendar, or list of things to do, her breakdown is schedule for? I, for one, hope that she has a nanny and a team of specialist to help Trig along because, as some know, special needs kids need everything from lots of attention to special ed. teachers and therapies—it’s a hard job, and for most of us, it can only be—their one job.

Some moms are having trouble with how her 17-year-old daughter’s pregnancy is or could, again, be “romanticizing” pregnancies and drawing attention to vulnerable teenage girls (as role models)—as in the Jamie Lynn Spears pregnancy. I’m sure that reality has already set-in for Spears, now that her child is a few months old—just imagine if she had a special needs child?

Another point was made that if Palin didn’t work (and was a stay-at-home mom) then her teenage daughter might not be in this predicament in the first place. Something to think about (I will admit that it had crossed my mind.) and it doesn’t bode well for the working mom. It’s such a shame. But at the same time magnifies the significance of the “Mom” job as the most powerful and hardest job one can hold; not to mention, mom’s with special needs children who will certainly feel the wave of appreciation from the Palin story.

As a mom and as a woman, I am certain that Palin will do everything in her power (and she will have power) to make sure that her kids and their kids are cared for and helped on so many different levels. Especially, Trig, whom I’m holding a very strong place in my heart; along with most others—I’m sure. If elected, I think Trig will be the most loved child to ever hold high office.

I'm looking forward to hearing from Sarah Palin tonight--she is intriguing!!

"The Storm After the Diagnoses" Poem

As some of you know I did a lot of poetry writing when my kids were younger (3 and 4)--and while I was going through the emotional roller coaster of understanding and adjusting to my kids' (who are just a year apart) diagnoses (which came at me back-to-back)--my daughter is severely autistic and my son was diagnosed as pervasive developmental delay (MR) which we know now is mild autism (aspergers). This was one of the poems (or prose) that I wrote when my world had just collapsed all around me and I was making my way without much help ... It's about our previous school system and realizing that people are just people no matter what your circumstances (or life) might be. Teachers are trained to teach our children of special needs but are not trained to deal with parents of children with special needs.

"The Storm After the Diagnoses"

When you feel like you’ve just hit bottom.
When you think it couldn’t get any worse—it does.
My daughter needed more services, and I needed more help.
My son was just newly diagnosed with a disorder
That I still couldn’t digest
So I called her school’s director for help, but got no answer.
I waited for word, and got no response.
I yielded when I should have charged;
I could take no more.
My emotions were riding high
Building like a turbulent storm;
Turning the once blue skies dark; the calm ocean fierce.
I drove to the school, opened their doors
And sailed in on my tumultuous wind.
I demand help. I demand services. I demand blue skies!
The teacher: the one with the bad reputation
Was the one I spoke with and she was not sympathetic
But rather quick and dismissive. Was I rude?
I was inquiring about her boss’s whereabouts
And desperately seeking a meeting
But she didn’t seem to care
“She’ll call, she'll call”
Was all I got in a brushing-me-off kind of way,
As if I were a nuisance like a bill collector
And was appeasing me with “It’s in the mail.”
She knew about my son’s new diagnosis
And my daughter’s new problem
But did she offer to help or understand—No!
Maddeningly enough, she barely maintained eye contact
As if she had better things to do.
I grew angrier and angrier by the minute
And wasn’t about to go away without a final word for the director
And an attention grabber for an unresponsive teacher.

“Pathetic Witch” printed in neon as bright as sun
Atop my daughters IEP for all to see.
(Funny how the teacher actually got it wrong
“Cold-hearted Witch” was what I actually called her.)
Nevertheless, small lettering of ugly words
Have a powerful way of magnifying and glow
Like a big, yellow caution sign flashing brightly in my face.
The round table struggled not to laugh
And I could barely speak.
A trust between parent and teacher had gone bad.
An agreement of confidence was broken.
An emotion of dread was unanalyzed. Or was it?
I had realized at that moment that business was business
Not matter the business and delicate circumstance.
Gossip stops nowhere especially when an unsatisfactory
Reputation warrants an extra brownie point.

She sold me out; fed me to the dogs;
Led me upstream; hung me out to dry.
Look out for number one—isn’t that the philosophy?
The ugly surfaced; the nasty prevailed;
The Cold-Hearted Witch was living up to her new name.
Institutionalize was her word of the day.
DSS was also thrown my way.
Mouths hung open. Eyes glared. Solemn mood.
Silenced lingered for what seemed like an eternity
As shock waves settled in the thick of the minute
Was this a war or a child plight? I wasn’t sure?
But pay back seemed to be in store!

Lesson number one:
Remember the rules; remember the politics; remember the game.
No matter what wrong was committed; no matter whose fault it was;
No matter what feelings were exchanged, always:
Kiss up; suck up; play the political game and be friends
No matter how much you cringe
Because you will be rewarded--your child will be serviced.

First Day of School Excitement ... Or Not!

My son hates school. I know this because I had to give him a friendly forewarning that school starts tomorrow. Yikes, why is mom always the bad guy. I should have had Grandma or his father do it. If today was any indication then tomorrow will go like this: I will practically have to peel him out of his bed in the morning. And if that's not indication enough that he doesn’t want to go, then the foreseen moaning and temper tantrum little thing like making a fist in the dead air would ensue, preceding a comment like “ School Sucks! Oh, did I swear?” And then terrible regret that he swore. “It’s okay," I will say, "just this once.”

No, my boy is a summer kid. We live in Plymouth, MA (home of the Pilgrims) and summer is the thing we do here. Beaches, ponds, tourists, restaurants ... Oh, and by the way, and because you just might ask, Plymouth Rock is not a sight to see. It's just a rock, and a little one at that. Whenever relatives or friends come to visit and they see the “Rock” for the first time, well let’s just say their comments usually follow: “That’s it!?”

So go see Plimoth Plantation (No typo, it’s spelled this way in remembrance of the first Governor who couldn’t spell). It’s a place to visit and a day's worth of fun. At least you get to meet some of the people from 1620; visit their house; listen to what they do and eat all day; hear and see their life. And afterwards thank God/or Someone that we live in the 21-century!! What would they do with kids with special needs? I always think that when I visit a place that represents our history. I haven’t been to Plimoth Plantation since I was a kid, however, but I’d be curious to ask them that question: Where are all the little special needs pilgrims, just curious?

I, however, looked forward to the first day of school. I didn’t love school, but there was something about the first day that was exciting: New wardrobe, lunch box, shoes, even the first day smells were different. Cool and dark in the morning, like it’s a new world instead of just another summer’s day; with a pang of nervous excitement that nothing could cure, especially breakfast. Knowing that I would meet my new teachers, see some new and old friends (always had a new best friend every year, funny how that was).

Middle school was much the same as elementary; high school and all of its usual nightmares that came along with those teenage years: a cheerleader just to fit in with the "cool" kids; preppy clothes with alligators on the front of them; corduroys; duck shoes; ribbons in my hair (and that was high school); forcing on my fall clothes in the heat of (still) summer—so not looking forward to Nick’s first day of 9th grade next year. His doctor even recommends keeping him on his meds (for anxiety) up until the passing of next year, at least.

No, there’s nothing like the very first day of school … well at least for the kids, but for moms everywhere … “Yahoo!” instead of “School Sucks” might be echoed from sea to shining sea, if only in a whisper!!

So just hanging out on the day before school begins and I’m thinking that Nick doesn't smell that air of excitement. No, he’s moping and wondering, “When’s vacation?”


Here I've added first day of school stress reducers for all of those who might be going thought the same kind of day.

Aah, Reaping the Benefits of Good Communication ... Finally!

Ever notice that good, quality communication is lacking in almost everything we do and who we know: How many can raise their mouse and say they have the benefit of living and working with good communicators? Come on… no passive aggressive husbands, boyfriends, parents, siblings, bosses (Ugh, that’s worse!) to vent about? And lets not mention school districts and special education programs of various sorts … oh, won’t go there (that's another blog). But let’s face it, it’s everywhere … and it’s called dysfunction—and we all live with it and probably have trouble living without it; except:

Meghan’s school is right on the functional communication track—that’s right—I said functional!! And, thank God for that! Because I still feel like I’ve just dumped her off somewhere and said: Ha, this is hell now you raise her. “You” meaning a crew of people: Classroom teachers (and plenty of them) residential teachers, residential caregivers, nurses, doctors, specialists … you name it they’ve got it.

As Hilary Clinton once said: “It takes a village!” And I think she’s right!

Good, effective communication has got to be the hardest thing to achieve when there are so many people “in the village,” but it’s ideal at her school. At the beginning her direct one-on-one school and residential teacher (yes, two different people) would call me everyday to report in. And I would also call the residence too, just because I could! Then it slowed to once a week with a scheduled call from her residential teacher, who we’ve gotten to know very well (personally and professionally) from the calls and our weekly visits—she’s like a house mommy!

She tells me everything that happened during her week—information reported through computer and written documentation so that everyone knows how Meghan did /and is doing on any given day, while also monitoring her progress. I’m never without info …

I’ll even get a call from the lead nurse if Meghan is having a nurse’s visit (routine or unscheduled); a dentist appointment; the eye doctor; the sniffles … they’ll call just to report in and then call again to let me know how it went and how she did (like the dentist’s visit) and without missing a beat.

And as of late, Meghan has advanced to a communication device and is constructing sentences using it--a skill she could not do so easily at her other school and home ... a benefit to her speech and language specialist and classroom teachers, no doubt. Can't wait to meet her OT specialist and adaptive PE teacher ... they'll have her swimming laps like Michael Phelps in no time!! ;)

Again, it takes an effort from everyone--together--to help a (autistic) child succeed! And good communication is the heart of this effort. But this school has got a system that makes it all seem so easy!

Now that’s refreshing! The dysfunctional family that’s isn't!