Thursday, February 23, 2012

"He's socially retarded".....

First I want to say, I hate the misuse of the word Retarded. Like so many words in our vocabulary, this one has been taken and convoluted to become a word of hate and ignorance. I cringe when I hear people using it. My son's school, the Norwich Free Academy, recently did a great presentation seen here: Norwich Free Academy R Word Campaign

My 17 year old son has Asperger's Syndrome. It's sometimes hard to explain what it is.  Someone once described it to me as he's socially retarded. From the time my son was very little, I knew something was off but because I was a young mom with three kids by the age of 22, I was just seen as what's often referred to as "a breeder". You know, a person who has a lot of kids at a young age. I was discounted because they thought I was just needing attention. That I was a hypochondriac. So, I gave up on fighting but only for a little while.

When my son was a baby he was almost always content. He didn't crawl normally, he did a combat type crawl, he didn't walk until almost 18 months old, he had a speech delay and he was obsessed (read crazily, insanely obsessed) with dinosaurs. As soon as he could say Paleontologist, that's what he told people he wanted to be.

When my son started school some things we noticed were almost innocuous but they just didn't sit right with me. He did math "out-of-the-box" as his first grade teacher described it and he couldn't spell no matter what. Or so we thought. Turns out, he just couldn't spell on paper. When he was given an oral test, he could spell almost all the words. I tried to get his teachers to understand this but they didn't want to hear it. He was later diagnosed with a sensory processing disorder. Common in kids with Asperger's. He didn't understand sarcasm. For example, his third grade teacher once asked her class "What are some things money can do?" and all the kids responded with buy things. My son about came out of his seat with excitement because he knew something money could do that no one else had mentioned. When called upon by his teacher he excitedly proclaimed "Mrs. Ramsey, did you know money can burn a hole in your pocket?" and he was DEAD serious! She had to turn around to laugh because he was that serious and because if he saw her laugh, he would cry. He didn't like it when people laughed at what he did. Even if it wasn't making fun of him, he took it that way.

When my son started middle school, that is when things became glaringly apparent. He could not connect socially with his peer group any longer. We were seeing a psychologist at the time and he was in counseling and they said he had ADHD and depression. So onto meds he went. Not because I wanted him to take them but because I wanted him to be able to function.

He had always struggled with organization and could never turn in his homework because he could never find it. Another common trait amongst Aspergian's. Unfortunately, he almost failed 7th grade because of that so I pulled him out and home schooled him. He was testing into college at this point in everything except Language Arts and mostly because he had to write things. There are fewer bubble tests, or multiple choice questions in Language Arts.  His handwriting was so poor. It still is.

So the catalyst for him being diagnosed with Asperger's was not what you would think.  It did not come from all the countless meetings at schools with their Special Education Department, or from the Psychologist or from a therapist. After 14 years, it came from me channel surfing. Yep, channel surfing. One of the thing my husband hates that I do actually is what got my son diagnosed.

I happened to be channel surfing while the show I was watching was on commercial break. I happened to flip over to a channel that had one of the Hollywood new shows on like Entertainment Tonight or Extra or something like that. There was a girl on there talking. Her name was Heather Kuzmich and she had just been kicked off America's Next Top Model. She was talking about how she didn't do well in social situations and didn't like to be touched or like certain textures. Bells started going off in my head. OMGOSH, she is talking about my son! That's when I started researching. That was around November of 2007.

It took 8 months to get my son diagnosed by a Developmental Pediatrician and Child Psychologist. I went through hours of frustration with this man. He actually asked me if I was one of those parents that was just unhappy with the fact that my kid wasn't a straight-Student. I was so mad I cried, an unfortunate problem I have and hate. I told him I would be happy if my son brought home an F if his teacher said he was doing the best he could. Apparently that appeased him because he became nicer after that.

Needless to say, it took 14 years and a lot of frustration. I was humiliated on many occasions and I almost gave up. Heather's diagnosis and testimony lead to my son being finally diagnosed and my son's diagnosis helped a friend realize her son too has the same disorder.

All I can say is NEVER give up. If you believe with all your heart and mind that something is not right and if you gut tells you the same thing, chances are, you are probably right. No matter what, stick to your guns! I can tell you that I had a Special Education Superintendent sit with my son for 5 minutes and actually ask me on a scale of one to ten, how convinced was I that my son had Asperger's. Yes, really! I told her that since a Developmental Pediatrician and Child Psychologist of over 35 years of experience diagnosed him, I would say about a nine and a half. She STILL did not believe me and sent my son for testing. No shocker when it came back as him having Asperger's!

Above all else I will tell you that if your child has special needs, fight like you have never fought before and DO YOUR RESEARCH! Educate yourself so you can educate those that aren't. Be your child's best advocate.

My son is about to graduate high school. I love the school he is in. They have great Special Education resources and a great team of facilitators willing to make the necessary accommodations for my child to succeed. No, he is not an A student, although if he turned in his homework he would be, but I am happy he has made it this far. And for the record, he plans to go into the Culinary Field and has already been accepted into college. So much for Paleontology, right?