no- that’s not the reference I’m trying to make….

I feel like the Jane Goodall of Autism.  She’s the only person I could think of to compare myself to.  My degree is in Educational Psychology.  It was a couple years after the diagnosis, when I finally came to terms with the label of Autism after hyper-loading every book, video, and expert’s words on the topic, that I decided to ignore it all.

Yep – donated all the books to the charity store, deleted all the PDF’s, Audio files and Manuals.  When we transitioned out of the “Birth to Three” program, we lost all services because my husband had insurance.  Then he died, and we had no access to health insurance.  I was on my own and nothing any of the experts said fixed my child.  I rolled up my sleeves, put on my comfy pants, and let my inner psychologist loose.

I stimmed, I rolled my eyes – watching my son carefully making sure I was mimicking him perfectly.  He found it funny, but it helped us bond together.  Instead of stopping the stimming, I wanted to know why he stimmed.  Then, if it was something within my control to fix, my theory was he wouldn’t need to do it anymore.

I practiced echolalia and playing the same 4 second bit of a video over and over again, watching it closely.  The more I tried to be like him, the more I began to understand why he did the things he did.  Impatience or frustration coupled with the inability to voice why equaled pacing the hallway a certain way.  Needing the bathroom was a different kind of dance.  Before long, I realized all the stimming was dancing – it was his language.  Perhaps this is why he feels so connected with the bees.

The more I learned about CJ and why he did what he did, the less-helpful all the books and advice were.  I’m sure they were a good fit for someone else – but their Autism wasn’t my Autism.  I have had to over-explain so many times how I disagree with giving a teenage child a chewy-toy.  If you can train a dog not to chew on things, then certainly my super-intelligent son can learn not to chew on things.  He doesn’t have a medical need to chew.  Remove the negative stimulus causing the undesired behavior and the behavior will disappear also.  In this case, explaining to my son the “WHYs” of not chewing on things was all I needed to do.  Now, when he feels he needs pressure in his mouth, he has a number of things he learned from his OT, Miss Molly, that he can do instead – socially acceptable things.

He was biting on his hand.  His teacher explained how that isn’t a good behavior and then she asked him if he wanted her help to stop doing that unwanted behavior.  Every day, they made a contract together to reduce the hand-biting.  Now it’s only in extremely stressful situations for him that he bites his hand.

I paid attention to how he reacted in different environments also, and what kinds of things made him uncomfortable.  Then, I didn’t take him there anymore.   Why drag him places he doesn’t want to be.  The places he must be that may not be fun for him, I prepare him with everything he can expect from the trip, and how he gets to “unwind” when we get home.  He understands the whys of proper behavior in public.  He trusts me now to tell him why first, and then what I want from him.  He never asks to take his iPad out of the house on trips.

We have very few meltdowns, always at home, and when we do, I can usually figure out why in a few seconds.  We have more tantrums lately, but those are because his iPad needs charging.  He still lacks a sense of personal safety, and for that, he still requires close supervision, but his room is a safe place and he enjoys spending time in there now and then.

So my first step to learning “how I do it” is:

  1.  Forget the diagnosis and parent your child.  Learn their language.  If you know your gut is right, follow it.  You are the only one who knows what your child needs to thrive.

 

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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

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