Where’s My Autism Handbook?
It’s been about a year and a half since we started the process of finding out what was
wrong going on with our son. At the time our youngest was just five months old, but I wanted to know more about the reasons why our middle son who was developing normally, now seemed to be moving backwards instead of forward. It took less than two months of testing with our Child Find program for them to diagnosis him with Autism. The thing I want to know is “Where’s my Autism Handbook?”
Twice in the last 24 hours I’ve read about the term non-verbal autism. Both times I said to myself “what the heck is that?” So naturally I depended on the internet to help me learn more about the term. A term that I honestly have to say scares me more than I care to admit. See if you’ve been following my Autism posts then you know my son J.B. was diagnosed with Autism when he was three year old.
A few years ago I shared for the first time about him when I wrote my post – Wishing and Waiting for Words. When I wrote that post I didn’t know about his Autism, while he was displaying signs we just couldn’t see past our own selves I guess. We wanted to believe that he was just taking him time to talk, that he would one day have an ah-ha moment and words would start flowing like a faucet from his mouth. We started to gear up for his endless questions about why, who, what and where. We waited and waited and once our fourth child was born I started to see what I wasn’t seeing before. The small signs that were there all along that I was missing while I was hoping for something that now seems it may never happen.
There’s an old video on my computer of J.B. saying hello. It’s a short clip where I’m asking him to say hi to my camera. I was working on a blog video that day and he kept interrupting. So I gave him a chance to film hoping he would give me a chance to work. I would give anything to hear those words from his lips again. I would let him interrupt me a thousand times over and over if I could have it all again.
When we received J.B.’s diagnosis, no one told us anything about Autism. All we received was our copy of the findings in the mail. They sent it to us early so we could bring to our next appointment, where they would be setting up services based on their findings. In the packet were three sheets of papers from the staff psychologist letting us know based on her findings our son had Autism. One sheet listed some websites we could visit. That’s it, no real direction on where to start and what to do next.
Now that I’ve been seeing people talk about non-verbal autism I’ve been wondering if this is our son’s faith. Will he develop words with speech therapy or will he solely rely on his communication device all his life. I don’t know if I need to find more communication software for his device. Should I be getting a different device for school and home. How does it affect his goals for school and life. It seems like just when I think we are starting to understand what’s going on with our son, something else comes up to knock me off my game.
I don’t think I’ll ever know everything there is to know about Autism and I know that on one person could ever create a handbook on the subject but I sure wish there was a handbook to refer on days when I just don’t know what to do. Like today when I want to know more about being non-verbal and autism. If you have a child that has autism and non-verbal, drop me a line about how it affects your life. I would love to find more families like ours.