Sunday, May 23, 2010

The Elephant in the Room

That's right, I'm going to talk about it. 

There is a big myth floating around that Asperger's Syndrome is a label put on a person who is categorically a Supergenius, if a bit of a quirky oddball.  I may be contributing to that myth a bit by going a full year in my blog talking about the lighter moments of what it is like to live with someone or parent someone with Asperger's.  I'm very lucky to live with one who is extremely funny, oftentimes intentionally, and more often, not intentionally. 

But to be honest, luck has little to do with it.  Many people worked very hard to get him to this place from the screamer he was for his first three years.  His early childhood is what made me find out what I was made from, and it was much stronger stuff than I ever could have imagined.  And I have a huge imagination.  I became the lion that roared, the Mama Bear who did everything she could to protect her cub.  Part of that was taking him to this doctor and that for tests, etc that included two sedations before he turned three.  And like his mother, Captain Comic is extremely sensitive to sedation.  There is nothing scarier to a parent than to watch your tiny child not wake up for 36 hours. 

Part of that process was getting him into Early Intervention, which I was a bit late in doing, so he only got three months worth of it.  He received at home and Center-based treatments (two towns away) in Occupational and Speech Therapies.  By that third month, I learned a lot of tools to help him, and he aged into the local Integrated Preschool in the next town.  By the following year, they opened one in our little town's only public school, the elementary his brother already attended, which simplified things a great deal for me, and I was finally able to return to work part time, rather than just manage around his care and treatments which continued throughout his three years of preschool.  His team and I decided, with his late August birthday and where he was at that time, it was best that he remain in preschool rather than advance to Kindergarten just yet.

The following year, days after his 6th birthday, he entered his brother's old Kindergarten class, with the same supports available to him as he had in the Integrated Preschool.  Thankfully, We were in Massachusetts, among the top ranked Special Needs states especially in regards to Autism Spectrum Disorders, and in an excellent school district whose main mode of thought on special needs was to integrate them as much as possible.  Captain Comic was challenging, but with the right supports in place, from continuing his Speech and OT, to Sensory Feeds in the OT room on regular and as needed basis, he progressed well. 

By the end of first grade, He had friends and went to birthday parties.  Other kids came to his. We had regular playdates at parks and at each other's homes.  The girls looked out for him in the cafeteria and playground. He had a girlfriend and they were going to grow up and get married.  She was also the prettiest girl in the class. He was thriving and everyone who worked with him loved him.  We cried in IEP meetings about how far he had come from the kid who when the OT met him at the original Integrated Preschool, wondered how she was going to help this kid, who looked impossible.  He was down from one-on-one micromanaged  support in the classroom to one-to-three, more observation-oriented support.

And then we moved to Virginia, one of the worst ranked states in Special Needs, and the first thing that happened, the first school he attended ripped his brand spanking new IEP to shreds because it was jam-packed with accomodations, "there was no way they could provide!"  I replied, "Well they did in Massachusetts!" 

But I was alone in the room, which began to shrink and swell, and it was the first time I ever really felt I had to fight for his needs, and I didn't know how to do so without making more issues. 

They tried the Integrated approach without the old accomodations to keep him functioning in the classroom well. They didn't believe me that that was why he did so well in Massachusetts. They had issues.  Eventually we moved into a different school's neighborhood, but kept him where he was, because all the other transitions, like the double move, were setting him off as well, let's try some kind of consistency, but I chose the wrong place to provide it.  I should have moved him to the newer school as soon as we bought the house and moved from the apartment.  By the time I did at the start of the new school year, it was far too late, and the District refused to provide the summer program that was a given for consistency where we came from.  It was provided in the old District, because consistency is what any person on the Autism Spectrum needs.

Needless to say, at the end of the first semester in his zone elementary, things had gone from bad to worse.  The 'supports' they provided were basically to keep him from disturbing the rest of the class too much.  To say that he can be loud is an understatement.

The tipping point, and what landed him in what is now being referred to as a Behavior Support class, but upon his entering was called The Emotionally Disturbed class in yet another elementary, was they were trying to give him one of his sensory feed walking breaks to calm him down (I think they more used it to get him away from the other students, and a lot)  and Captain Comic grabbed onto the door frame and screamed a la Calvin and Hobbes, "Get the authorities!  Call 911! Police, Help!  They're trying to kidnap me!"

See, now I read that as he wanted to stay in the class and work with the rest of the students.  But because at that point, he was so far gone in ability to manage him without the proper tools - accomodations - in place, he was moved to a smaller class environment in a different school with 'troubled kids'.

I met his teacher before he entered, and mind you, through all of this, I was going through two miscarriages and then a complete bedrest pregnancy, so I was wheeled into this meeting. I'm sure a lot of what I was going through wasn't helping his behavior at school, either, as he worried about me and was excited about having a new sibling.  I was barely able to speak, to be honest, and my parent advocate pretty much handled the meeting, bless her heart.  She saw us through all three schools.  I could not be civil anymore after they had broken down my highly functioning child so thoroughly within 18 months. 

His current teacher and her team, learned with him to the point that all the other kids in the District with Asperger's ended up in her program, because she cared and wanted to learn what worked with them.  I love her.  I want to keep her. 

So, what has prompted me to write this treatise on my child, is Friday afternoon, we had his Transition to Middle School meeting.  And here is where I start to cry again.  Captain Comic briefly attended the meeting, mostly to meet the Head of SPED for his new school.  He was a part of the meeting, until I noticed 'that look in his eye', the one that means he is about to burst from nervousness into a repeated monologue  from a video, or his description of a funny dog video playing in his head. So I interrupted the meeting with an opportunity for him to exit before his vocal outburst.  On his way out the door, he said he was "glad to go back to his Science class, because Ms. I is such a fun teacher."  The others in the meeting seemed to appreciate that. 

Then we discussed the possibility of his moving out of the Behavioral Support Model, which I neglected to mention above is a stepped program back into Mainstream. Right now, he is fully re-integrated in Mainstream. That's a long climb back from that screaming doorframe moment. His next three year IEP Eligibility meeting comes up at the end of October.  He'll still need accomodations to function in school, but it won't be under the label of Behavioral Needs.  It will be provided under his Autism label through standard Special Education, according to his IEP. 

We're going to keep an eye on how he does in the beginning of the school year at the Middle School, but he'll be back in his zoned school, with the kids from the neighborhood.  I think this will all help him to integrate in the neighborhood better, too, because for now, he's the odd kid at the pool come summertime, the other kids don't understand. And during the school year, they see him wander periodically with our dog, but mostly, I keep him close to home.  There is a boy across the street who is a year ahead and another kid who comes to shoot baskets with him. They are nice guys, but I think they don't quite get Captain Comic, largely because they don't see him at school.  Captain Comic really wants to be friends with them both, and have a 'normal boyhood' in which he hangs out with his friends. 

It may finally start to happen.


  1. Cath! What a journey you have been on ... and what an incredible woman and mother you are. I'm speechless to read the story and think that you are 100% right in putting "Superwoman" at the top of your blog page. You truly are!

  2. thank you, bethanstritton. I appreciate that you pointed out superwoman!

    sometimes i forget why i have that up there, except by virtue of so many of us mothers just need to be to get through everyday, special needs or not.

  3. Hi :) after your weekword comment, thank you by the way, I noticed your tags for Asperger's. I also saw that you were a MA native like myself at one point. I put 2 and 2 together and read this post... I used to teach in MA on the North Shore to a class of children with Asperger's. I feel like I should know you! This post got me so frustrated for you and your son. I haven't taught in a classroom since I moved to NY in 07. When my son was born, I decided to stay home with him, I do miss teaching so much, but it was an important trade off I had to make. I've often thought of becoming an advocate someday. I really enjoyed the kids. I wish I had written down all of the crazy wonderful things that were said in that classroom. We shared so many thoughts and laughs and other emotions. I'm so grateful for the experience. I learned so much.

  4. justahumblebee, thank you for this. feel a kindred spirit in you, too! i worked in educational support position from long before my sons were born, but only started working in learning disability support when i realized what i could handle because of raising my son. it was the best work i ever found, and still periodically tutor students privately here in VA.


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