Apologies in advance. These first few posts are a bit schmaltzy. And yes, I found the word schmaltzy on thesaurus.com, and I am unashamed. It’s just sounds like the word I need to use here. But I promise that all my posts are not schmaltzy, in fact they will likely be the opposite. But I feel like there is a lot of backstory and its necessary to know we wouldn’t survive without our support system.
When I first sought out an evaluation, it was actually just speech. It was noticeably delayed, and I would soon learn he was about 18 months delayed by the time we started at 2.5. I told my parents I thought maybe he was autistic. I was surprised (and angry) to learn they had the same concerns. Why didn’t anyone tell me? Seriously. I DON’T KNOW WHAT I AM DOING! He was 2 years old, I didn’t know there were red flags. But it’s ok, I wasn’t ready to hear that information. And I am certain hearing it before I was ready would have led to resentment and hostility even to this day.
Early intervention and a strong support system are key. If I hadn’t sought an evaluation for speech, who knows where I would be. Speech led us to OT and PPCD, and put a team of experience people around me. Qualification for PPCD gave us an Individualized Education Plan (IEP) at 3 years old. I know moms who are struggling to get accommodations for their school aged children even with a medical diagnosis. We are so lucky, this is not us.
We sought private speech as soon as we aged out of ECI. I mentioned in my earlier post I delayed PPCD enrollment but I felt it was important to continue speech. OT had what felt like an insanely long wait list but eventually we started private OT as well. We are going on year 3 at Therapedia and couldn’t be happier. The therapists there are so caring and feel like an extension of my family. The relationships we formed there are invaluable. Again, lucky. Rivers was just recently dismissed from OT (temporarily we expect) and while its actually GREAT, I am sad. I can’t explain it, I should want him to move on from therapy, but it feels a little like climbing a tightrope without the safety net.
While good therapy and an accommodating school system is important, I think the thing that has really helped us the most has been family. I have always been close with my family. We did family dinners at my grandmothers house regularly my whole life, and we still do. My parents are long divorced but are both active in our lives and the lives of my children. We celebrate every holiday, birthday and milestone twice. It’s exhausting and it takes a toll, but I wouldn’t have it any other way.
My family has never treated Rivers any differently. They never suggested it was a lack of discipline, or structure that caused his behaviors. They supported my search for holistic treatments of gut health and offered support when I suggested that might not be enough. They understand his stimming, and provide an outlet for him to do so. One of his stims is slamming doors, to the point it would drive any human to insanity. My mom purchase those tiny circle stickers you use to reinforce binder pages, and labeled each of her doors. The green ones he can open and close an unlimited amount of times, to his hearts content. The orange ones he can open and close 5 times then he has to move on, the red ones are off limits. Genius. This system works flawlessly, she makes me feel like a bad parent, but in a good way. Sometimes I cant see outside myself to create a system that works. The day to day grind becomes unbearable and I feel the burden of life weighing me down. This is why support matters. I could have a family that doesn’t believe in Autism, you know the ones that think they just need a good spanking. They bend and flex with me, they learn along side me. They are my rock, my shoulders to cry on, and my relief when it’s all too much.
Rivers is 6 now, you can probably tell he is much younger in these images. He was about 2.5-3 years old in these; the age when he started therapy. It felt appropriate to put a reference as a reminder of how young he really was when we began this journey. It made my heart happy to look through old photos and reminds me I need to be better about documenting our daily life.
Typically Atypical 