It took some time between my son being diagnosed with autism spectrum disorder last august, and finally telling people personally and professionally about it this past week. I was trying to figure out why I was so hesitant to say anything. I knew a large part had to do with people saying stupid stuff. I already had plenty of that in the handful of people I did share with. I also knew when I got the diagnosis that my only experience with autism had been through my previous job as a 911 dispatcher. Here I was recalling all these frantic calls from parents with children who were aggressive or having these epic meltdowns. So even I had no clue what exactly ASD meant initially.
So I’ve spent a long time reading everything I could get my hands on. Taking every online course. Watching movies, tv, etc that had any mention of the spectrum. Talking to anyone I knew or met that had children on the spectrum. You name it. Just trying to educate myself as quickly as possible so I could be the best help to my son. But there I was still kinda avoiding telling people.
Was it feeling like a failure as a mom? That seemed to be something I felt since the day he was born honestly (why is it so hard to breastfeed, why isn’t he sleeping through the night, how does everyone else look so put together and I feel like its totally obvious I have no idea what I am doing).
Was it worry that my husbands anti vax family would blame me because I vaccinated my kid and now he has autism? I definitely thought that if anyone said anything like that it would result in me being charged with assault and battery lol but it wasn’t what was holding me back from sharing…
It finally hit me after watching the show “Love on the Spectrum” and reading a book written by someone on the spectrum what was really going on for me.
Now when my son got diagnosed, he was non verbal. And he had an obsession with balls (throwing them at objects in the room like ceiling fans, bouncing them in place, or hoarding them). After the 3+ hr assessment, the doctor told me he was 99% sure my son was on the spectrum. But…he wanted to stress that my son was very “high functioning” and was level 1 (needing the least amount of assistance). That with the right interventions done soon enough (he kept stressing I had until my son was 5 before things would be more ‘permanent’) that I could ‘reverse’ and make him as close to neurotypical as possible. Get him talking and he could pass as your everyday average kid.
And that was the strategy. We started with speech therapy twice a week. Which I will say has had the greatest impact as my son now communicates pretty good and is only getting better with each visit. Then I got him into ABA because that was what my health insurance covered. That quickly became a waste of time. I could go into detail on that later but I’ll sum it up here with no in person staffing so they wanted to do it over the phone via zoom. I personally hate zoom so a three year old trying to learn via zoom….come on. So I started out of pocket Occupational therapy which has been expensive but well worth it. He gets to go to a sensory gym and work with a fantastic staff that has a very detailed plan for his needs.
Like I said earlier, from the moment he got diagnosed I’m reading everything I can get my hands on. But what I failed to do from the get go, was read a book by a person on the spectrum. I kept reading books by doctors who studied ASD. And I’m not saying those books weren’t helpful but it wasn’t until I started to actually read and listen to people on the spectrum talk about what it is like being on the spectrum that it hit me. The initial approach from the Doctor who assessed him and how we were going into intervention programs was trying to get him to be more like neurotypical kids.
He’s never going to be like neurotypical kids. There is no cure for autism. No matter how much ABA I do he will only ever learn how to mask or pass at best. Why in the world would I want him to try and blend in and pass? I realized what I needed to do was learn how his brain worked, how things were different for him so I could help teach him and better engage with him. I needed to see that there is nothing wrong with my son that needed to be fix or corrected. He’s just different. And that’s ok.
He is an amazing kid. He is always laughing and smiling. He has a compassion for animals, especially dogs. He is very detail oriented and his memory skills are incredible. He is just full of personality and surprises. I love every moment I get to spend with him.
This is why I am finally able to share with people about my son’s diagnosis (and why I am on hiatus from doing artwork full time).
I had to change my thinking about what having autism actually means. And I guess I had to stop thinking about my damn self too if I’m being completely honest. This journey as a mom (in general not just to a child on the spectrum) has been a rollercoaster. I just hope I keep learning from my mistakes and I promise to always strive to be the best mother to my son that I can possibly be.
If you’re reading this and you are a parent of a child on the spectrum or on the spectrum yourself, feel free to reach out via our social media pages to connect and share some wisdom for me. On a side note, Management is slowing down herself but doing well overall. And we hope to be sharing some works in progress for Buckner’s Extravaganza in September soon.