My Journey from Autism Awareness to Autism Acceptance

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Niki, Community and Family Coordinator (CFC) at CTN, shares how she learned to move from awareness to acceptance after her son was diagnosed with autism spectrum disorder (ASD).

My son Brody was diagnosed with autism spectrum disorder (ASD) in June of 2011. Although  I was aware of autism and had some knowledge of and experience working with Autistic individuals through my job as an educational assistant, this didn’t necessarily give me many advantages as a mother. Parenting itself was also new to me, as Brody is my first born, and although I wouldn’t say the diagnosis was a total shock, I wasn’t quite prepared for the weight of it either. At the time of Brody’s diagnosis, I was nine months pregnant with my second child, so I had no time to waste. I got straight to work on checking off the list of recommendations from his developmental pediatrician, signed Brody up for all the services he was eligible for and immersed myself in books and articles so that I could learn everything I could about autism. That is, after all, what I was told to do to “help” him.

I thought I was doing everything right. If you asked his therapists from back then, I bet they would tell you I was the “model” parent. But I wasn’t the being the parent Brody needed me to be. He didn’t just need a mom who could “hit” all the targets, make all the visuals or follow all the medical advice. He needed a mom who would prioritize HIS feelings and respect them, no matter what that looked like. A mom who would consider his sensory needs and preferences and honour them, not find a way to make him “correct” them. He needed a mom who could understand autism, but moreover would take the time to really understand HIS unique needs. While I like to think I did some of this along the way, it wasn’t enough. I was very aware of Brody’s autism, but did I accept him for who he was? While I would like to say yes, the harsh truth I came to realize is, no, I did not.

By prioritizing the medical pieces, I completely overlooked what Brody was going through. He needed to be loved and accepted for exactly who he was. While my heart loved him for exactly who he was, my actions were that of a mom who wanted him to be a little different, a little more like the others. I was too concerned with the therapies, the reports and the progress. A little too concerned about the future, and not concerned enough about what was happening right in front of me. And then we hit the proverbial wall. Brody had been in intensive therapy for a little over a year and it wasn’t going as expected. This particular therapy,  that the professionals had sworn by, wasn’t the right fit for Brody. I had to take a hard look at myself and Brody, and really consider why I was doing the things I was doing for him.

Was it the best fit for him?

Was he happy and engaged?

Had he built trusting relationships?

No, no, and no.

Once I had the answers to those questions, I knew what I had to do. The physical action was to withdraw him from all therapies and allow him the opportunity to go to school and ride that yellow bus he loved so much. The mental and emotional pieces were a bit tougher. I had to rethink all that I thought about what being a good parent to Brody meant. It didn’t mean I had research all the latest treatments or remortgage my home to cover therapy costs. It didn’t mean I needed to have my basement set up with puzzles, shape sorters and matching games that he hated. It meant that I needed to accept Brody for exactly who he is in that moment and focus on the things that make him, and our family, happy. So that is exactly what I did.

By accepting Brody for exactly who he is, it not only took the pressure off him, but it allowed me to stop worrying about all the goals he was or wasn’t meeting. Instead, it allowed me to focus on a well rounded, happy life for all of us.

After all, don’t we all just want to be accepted for exactly who we are?

Niki Huxtable, Community and Family Coordinator at CTN and Mama who changed her perspective from awareness to acceptance and hasn’t looked back.