The statement “when you’ve met one person with autism, you’ve met one person with autism”, has never been more true. Though there can be similarities, those similarities are usually slightly different. For example: two kids could like deep pressure, but one will only want it on their legs and the other their arms and god forbid you do the opposite. That is how specific you need to be.
J is constantly surprising me. Every day he changes, good or bad, he changes. One day he is a ping pong ball, bouncing from here to there, with no amount of sensory regulating techniques to help. I mean it’s crazy. He has so much energy he doesn’t know where to put it. He can’t focus. The next day he’s so regulated without any outward assistance it’s a amazing. There is no rhyme or reason. There is nothing to predict how each day will be. I am constantly on my toes with him. It makes each day very interesting.
What does autism look like for us?
J goes to preschool on an IEP (individualized education plan). In his IEP he receives, OT(occupational therapy), this helps with his sensory needs; PT (physical therapy), working on his safety in environments and well as motor planning. Because of the fragile x, J is pretty much double jointed everywhere and has a hard time coordinating his body; Speech and ABA(advanced behavioral analysis), which is basically the holy grail for autistic children. It isn’t always effective depending on the child, but for J it has been the best thing. He learns fast under its model. He is in school full time. After school he has speech, ABA and OT. His days are long and very structured. He does really well with it and has a harder time with free time. My philosophy has been that if his schedule allows it I’ll add it. It can’t hurt him.
J loves technology. Anything tech he can find even if you hide it. It’s amazing to see him navigate it. We have the process started for a device to help him communicate. I can’t wait to see what that unlocks for him.
J is sensitive. Things upset him a lot. Oftentimes he cannot come down from it and it becomes a meltdown that takes a while to calm. Sort of like waiting out a hurricane.
J likes to be touched. He likes hugs and tickles. His new thing is making eye contact with everyone to say hi. He wants to play with you. The few books and songs he likes, he wants to involve you. It’s been wonderful to see his growth this year.
J loves water. Any kind of water.he lights up when he knows he’s going swimming. He can’t swim. He sinks like a stone to the bottom. Does this deter him from walking into water? No. This is why such a large portion of autistic people die in water. It worries me that he’ll end up a statistic. I want so much for him to learn to swim or at least float. The problem is swim lessons. Appropriate lessons I should say. He needs one on one with an instructor who knows autistic kids. He needs someone who can navigate his challenges and turn them into strengths. Swim lessons like this, if you can find them, cost a fortune and so we wait and hope that one day he can swim.
J is a big boy. He’s 50lbs and 45″ tall. He isn’t potty trained. It is a struggle daily to change his diaper. To find diapers that fit. We were incredibly lucky to discover that our insurance would cover his diapers now.
Insurance is a whole other beast, and although tricare requires hoops, ramps and a 10k they usually cover everything I need them to with nothing out of my pocket. This being said J’s after school 10 hrs of ABA cost around $60k a year. I will not complain about my health insurance too much.
His autism does not look like anyone else’s. He is unique. His challenges unique. His triumphs to be celebrated. He’s awesome and tough some days are more challengening and I want to lock myself in a closet, he’s worth it.