You know your day isn’t looking good when you have ugly tears in front of strangers, then 5 hours later in front of your son’s speech therapist. There are just days that I wonder if my son will ever fit in and if he does, who will he fit with? It goes back to the limbo space. I took O to a play group this week for “wonderfully made” kiddos with issues of varying degrees. At first he was shy, but he found his stride quickly, running around on the playground, playing tag, eating popsicles. Then, it happened. He got so jacked up that he punched another wonderfully made kid in the stomach. Then turned around and nailed the kids sister. My eyes welled up immediately. And that is on me, because that’s just who I am.
I sat him down in time out and we went through the whole “nice hands” speech and he gave his typical “I did not mean to” response. And truthfully, he probably didn’t mean to. He’s not a blatant asshole just for the sake of roughing kids up. When he gets into sensory overload, his impulse is to knock it out of the way. I made the decision to leave because of one little girl that kept saying over and over how mean he was. I just couldn’t deal.
I cried calling my husband on the way home. I just want O to be able to behave “normal” because he wants so badly to have friends. I worry will he be like this forever or will age help? I just don’t know. And I hate not knowing.
I posted on a local parents group asking what people do with their kiddos when they work and that kid go to short day programs. Have him go to OT! We already do that. Have him go to speech! We already do that. Have him go to ABA! We don’t qualify without an Autism Spectrum Diagnosis. See Dr. R for an ASD diagnosis! Cool, we saw him in January and he said that’s not the right diagnosis for O. I’ll give you the name of another doctor that will! He’s been to 3. How many more do we need?
I’m not certain that he will never be put on the spectrum. I truly believe that there will come a time when SPD will be recognized as a spectrum disorder. But, until then, we are stuck. I reached out to an ABA service asking for private pay information and basically telling them we were desperate for help because I know with all of my heart that is the one service he needs. The response, which is typical of all that I have contacted is that it’s a minimum of 9 hours a week, at $100 per hour. Awesome. $900 a week for 52 weeks = $46K and change. Seems reasonable.
The constant advocating and fighting slowly chip away at you. It’s made me a more difficult wife, a mom that is harder on my “typical” child, a shitty friend. The part that makes me the most sad is that I don’t enjoy him as much as I should. He’s funny and nutty and smart and I’m so sad that he doesn’t let other people see that unless he REALLY gets to know them. But that leads to a story about how friendships change when your kids are different. And that is really sad.
Our SENSE-ational Life 