Noah age 8 -Oct 2009

Noah age 8 -Oct 2009

Monday, February 1, 2010

How Was I Suppose to Know My Son Was Autistic?

So your child was just diagnosed with Autism. After the shock you probably thought, "How did I miss that?".

For me, that is what it was like.

Noah was diagnosed with autism kind of late. Not because he wasn't showing any signs. No, because his mother didn't have a clue as to what autism looked like (like it has a look!) or acted like.

In my defense I always knew what he wanted without him asking so I just figured he could say it. I thought I was being an attentive mother. Besides when I would bath him and we (meaning me) would play the "what is this body part?" game. He would look at me like "are you nuts I know what it is. Don't you?”

Noah always smiled and at least looked me in the eye. I didn't realize he wouldn't look other people directly. What mother wants their child talking to strangers and making eye contact?

Noah also was not sitting up on his own when he was a year old. But he could pull himself up with his arms and climb everything and anything.

Noah didn't crawl using all fours. He did the army crawl with his arms and elbows. These things had nothing to do with autism and everything to do with Noah's size and motor development. He was so tiny when he was born and just grew on his own curve it never dawned on me.

At 12 months old he was still wearing 0-3 month clothes (a little background. Noah was born at 37 1/2 weeks gestation and severely IUGR he was only 2 lbs 14 oz and 14 1/2 inches long. I had some placenta issues there). So Noah, not talking was to me nothing to be alarmed about. I was too focused on other issues.

Note to self: you should have started this blog when you first thought about it 7 years ago.

I would take Noah into his Neonatal follow-up appointments and all I would hear was "What" my boy wasn't doing. What do you mean? Not doing, Look how he lined up those blocks for you and made the dinosaurs migrate all in a line from biggest to smallest. How dare they say he's not doing something? He's well organized for being only a year old. (Anyone else ever get that feeling?)I remember dreading every time I had to go to a neonatal follow up because I would always come home feeling like a complete failure as a mother. That first year was horrible. Noah was the light of my life and No One could see what he was doing and that it was a miracle that he was even here to begin with.

They would mail me his reports from the follow up appointments with comments saying "a suggestion of PDD-NOS" but it Never explain in the report what PDD-NOS was. Everything else in that report was detailed enough his mother understood it. This term kept popping up in all of Noah's reports for at least 2 1/2 years and I never had the courage to ask anyone what it was. I was a stupid first time mother that thought that if it was important they would have said something to me in the appointment and then explained it in the report. Man I was so wrong.

It wasn't until Noah was 3 years old when I finally got the courage to ask a family educator "what is PDD-NOS?" She said, “Pervasive Developmental Disorder - Not Otherwise Specified”.

Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) still confused? Yeah, me to. So, I Googled it and then became very quiet and upset that anyone would suggest that my son had anything to do with autism. The only child I had ever met with autism sat in a corner of his mother’s house and played by himself and his mother quietly leaned over to my mother said, “he’s autistic” like they weren’t suppose to say it out loud. I never noticed that Noah didn’t play with his cousins or other kids (there wasn’t any children in the park we lived in). I knew he would get “over stimulated” and he would put himself in time out. I thought that was because of his IUGR thing.

So, now that was brought into the light, I had to prove to them my son wasn’t autistic. But this meant the beginning of another long battery of tests for the boy. At first he was diagnosed with PDD-NOS because Noah refused to cooperate with anyone who wasn't in his little circle of trusted people. After he was in his autistic preschool program he opened up a bit more and cooperated with the tests and later received a diagnosis of Severe Autism.

And thus, the story begins…

I am interested to know what your reaction was when you found out your child has autism.

1 comment:

  1. Wow! I can relate to a lot of what you wrote. My son just received the official PDD-NOS diagnosis yesterday, but I have been wondering for a long time. For me, my Sam was the 4th child to be born, so I could see early on that things weren't right. He wouldn't fully look us in the eye, as an infant, but would dart all over the place. By a year old, he didn't play with his bath toys, he lined them up. He also never babbled and was very late even getting a first word. We started early intervention at 15 months, but they would always say, "I don't think he has autism because he's too social", meaning that he would hug everyone he met. Or "he doesn't stim, so he can't have autism". Later, at the age of 4, he was diagnosed with a genetic abnormality called xxyy syndrome as well as severe apraxia. He has been in preschool for 3 years, and is about to turn 6. I have pushed and pushed for answers, and finally yesterday, someone put all the pieces together and gave it a name! I'm relieved and overwhelmed, all at the same time! I look forward to reading more on your blog, as I'm so anxious to find any source of support I can!! Thank you!