Yes, I know that is it Sept 3rd and I am posting day 2. I am not behind - yet. You have to live the whole day to find out what new thing you learned that day, sillies! So my thirty day scrapbook/journal will actually end on Oct. 1st.
Last night Gary and I saw the movie "Adam." It is a sweet love story about an adult man living with Asperger's Syndrome. I have to say that Hugh Dancy's performance was spot on. He was able to capture the monotone speech patterns, absolute cluelessness in social situations, even the slightly stiff walk without seeming stupid or mentally slow or like Rainman or Forrest Gump. Of course, no one with Asperger's Syndrome has EVERY symptom of the disorder. But the character, Adam, shared many traits with my Cole. I think Gary and I found the story more funny and more sad than the average movie patron.
In the movie, when Adam opened his cupboard and revealed boxes and boxes of macaroni and cheese I burst out laughing. Seriously, that is the only thing Cole would ever eat if we let him. When we were leaving the theater, I heard another boy protesting to his mother that he eats other things besides macaroni and cheese.
So now I am wondering if a desire to eat only macaroni and cheese is on the list of symptoms that specialists look for when diagnosing Asperger's Syndrome. When I sat in the interview with the psychologists that were testing Cole, did I say the magic words "macaroni and cheese" and tell them that indeed, Cole has Asperger's Syndrome?
The movie itself was good and had a good positive ending, but I left the theater tears. I made it to the restroom and cried heaving sobs. Everything hit a little too close to home.
Go see Adam. There are so many adults who never get a diagnosis and somehow stumble through life. That "wierd" person you know might just have this disorder. With a little patience and understanding, you may get to know a spectacular person.
We got the diagnosis on January 8th. My oldest son, Cole, has Asperger's Syndrome. (You can learn more about it here or here.) I can't say it was a surprise. Afterall, we put him through two days of diagnostic testing and a month of evaluation. I guess I was just surprised at the firmness of the diagnosis. It wasn't "it looks like he might have" or "it could be" it was "93% positive for Asperger's Syndrome."
I started crying about half-way through the results appointment with the two specialists. The first tears were tears of relief. Extreme relief. We knew there was something wrong since Cole was 4 years old. We've been chasing diagnosis' and treating symptoms. Now we finally knew.
The tears were tears of relief because now I knew it wasn't my fault. I didn't do anything wrong. I didn't damage him. I'm not a bad mom because sometimes he drives me crazy.
I cried out of relief that now we could start on a course of truly helping Cole.
I cried for the next two weeks.
Tears from memories of times that I have yelled at him or punished him for things he could not control. Tears that my firstborn has a medical issue that will affect him the rest of his life. Tears from the knowledge that his life will be more difficult and he will have to work so much harder than "normal" (Aspie's call us neurotypical) people.
My tears were tears of fear. Fear that I would not be able to be what he needs me to be. Fear that I will not be strong enough.
Finally, I cried tears of GRATITUDE. We so blessed and lucky. If he has to have this disorder, he's got two parents that will do whatever it takes to get him the help he needs. Two parents that will become AS experts. And while we are not rich, he has two grandparents that will spend their very last penny to be sure that he is getting the very best care and treatment.
So now, I am on my way to becoming an expert. I am assembling a team of the best professionals to treat Cole. He is already complaining about going to appointment after appointment. I think I have found a school that can meet his needs.
I've stopped crying.
I stopped crying because he is still Cole. He hasn't changed. He is very high functioning. It took us seven years to get a diagnosis! The tests that he took also show that he is very gifted. This is not atypical of of an Asperger's Syndrome child. Many gifted children with AS grow up to be extremely successful. They become doctors and lawyers and bankers. It has been said that Bill Gates has AS.
Life for Cole is going to get more difficult in middle school and high school. His college years and later, however, should greatly improve. He is likely to find other AS friends who understand and accept him. I believe that even without treatment, he would be okay. Everything we do from this point on will just make his life better and easier.
So there it is. The beginning of the worst January ever. Stay tuned, it just keeps getting worse.
I gave it a lot of thought before I put Cole's diagnosis on the internet. I know once it is out, it can't be taken back. I finally decided to talk about it because it is nothing to be ashamed of. Asperger's Syndrome is a recognized neurobiological disorder. Perhaps now that people know about it, they will cut him a little slack. Perhaps eventually I can help other mothers that are going through what I am going through.
Please know, however, that I will always protect Cole's privacy. When I write about him, it will only be in the way that his disorder effects ME. I will not write about specific events. Everything I write will always go through the filter of "will this hurt or embarrass Cole?" and "is it okay if every single person in the whole world knows about this?" and "if Cole reads this will he be mortified?"
Kal Barteski I am an artist of life. I create in paint, words, colours, letters and design. I am the principal designer at iDeaMonsters and the creator of LoveLife... all in chilly Winnipeg, Manitoba CANADA www.ideamonsters.com & www.love-life.ca