My Neurodivergent Ninja

Only 3 more days left of my PDA fundraiser. If you are able to support by purchasing a shirt it would mean so much to me! All money raised goes to PDA North America, the main source for PDA resources and support in the U.S.

It was exactly one year ago, on April 1st 2024, that we received our sons official diagnosis. Autism, unspecified mood disorder (hello, PDA), and developmental coordination disorder (the ADHD we were already well aware of, having been given that diagnosis in Kindergarten). Ironically April 2nd is World Autism Awareness Day. I can assure you that the most surefire way to make someone aware of Autism is to diagnose their child with it. With one appointment we became aware AF, on the correct date and everything. Well done, universe. *slow clap*

Obviously I had my suspicions, and had been talking about having him assessed for the better part of a year. We knew that there was more going on neurologically than just ADHD, but had no idea what. Husband and I are both ADHD and all I knew was that us and him were most definitely not the same. The appointment with the doctor who had overseen the administration of the assessment came early on a Monday, after what felt like an eternity. In reality it was about 4 weeks after his last visit, which is how much time it took all of the data collected from the full neuropsychological exam to be reviewed and analyzed. When kids are assessed, the tests are typically administered over two sessions of 3-5 hours each, whereas adults are put through one long marathon session of 6-7 hours. We had to go back 4 times. Four times. It was a pretty solid indicator of his complete inability to focus on anything.

Upon delivering the diagnosis, she asked us how we felt about it. It’s not a question I was expecting, and I suppose everyone reacts differently. Personally, I felt a mixed bag of validation, sadness, and relief, which was a weird combination of things. Validation because I felt like this confirmed that he is in fact unexpectedly hard to raise and why no common parenting strategies worked, and that we weren’t just terrible parents raising an untamable kid. Sadness because I knew this would impact his life in various ways, and that uninformed people would make assumptions about him without knowing the realities of certain struggles he faces every day. But relief was strong. Relief that we finally had answers as to why he did some of the things he did and suggestions on ways to help him navigate the world through appropriate therapies and practices. Relief that a diagnosis would enable us to get him set up with an IEP that he so clearly needed in order to get through school. Relief to realize that support is out there, for him and for us. And relieved to have better verbiage to preemptively let new coaches and teachers know what to expect, that wasn’t “outgoing and smart but he ignores boundaries and is socially akward and trying to get him to do anything that is not his idea is incredibly difficult”, which was quite the mouthful.

When people first receive a diagnosis there is so much that I think they do not expect. I expected to spend time going to various therapies or doctors, but I didn’t expect the shear time suck that it would be to research doctors, find ones accepting new patients AND our insurance, childcare options, types of therapies or treatments, insurance claims and coverages, school meetings, filling out mountains of paperwork required for intakes and state and school support, etc. It seemed like I spent days on end on the computer doing all of the things.

The other thing they don’t tell you is that you will become an advocate, like it or not. Working to get accommodations in school and constantly explaining to people various neurological differences and what different acronyms mean. Fighting for and being a spokesperson on behalf of someone else, all the time. I, and I suspect many people, had no idea just how varied Autism presents itself. I had preconceived notions of limited speech or constant outbursts or savant-like characteristics displayed by Dustin Hoffmans character in Rainman. While those are certainly struggles many people face, reality encompasses so much more. Based on Ninjas sheer chattiness alone, I certainly never  considered the possibility of Autism early on. It took awhile to wrap my head around just how different everyone is, and fully embrace the saying “If you’ve met one person with Autism… you’ve met one person with Autism”. No two are the same.

I’m certainly less judgmental of others than I used to be. In situations where my younger childless self would think that parents should control their children better, I now realize that they are probably doing their best and that I know nothing about what anyone may be going through. And it used to bother me much more when I’d see those looks of disapproval from other parents on the playground or during our attempts at extracurriculars. Now I know that we are doing our best and those people can shove it. Just kidding, sort of. People don’t know what they don’t know. Recently a dear friend sent me a shirt that says “We can’t all be neurotypical, Karen”, and I love it and want to wear it to all of the functions, because that’s what I nonchalantly say in my head now when I notice those looks.

Awareness. April hits differently now.