The day I finally knew…

by | Autism, Parenting

I always kinda knew… there were so many things. I gave him therapy, despite the doctors, other mums, friends and family telling me he was fine. I had long toyed with that decision. I knew the therapies, thanks to a University education in Psychology and Psychophysiology, but I wasn’t sure he was on the Autism Spectrum, so should I give him therapy?

I remember vividly drawing up pros and cons in my head, stacking evidence up, but not wanting to write any of it down, because I didn’t want to face this possibility. I knew it would make my darling boy’s life harder. I knew it would mean I had to do things differently, work harder etc. etc. Who wants that to be true? No one sane, that’s for sure! I even beat myself up, reminding my mummy guilt that the doctors and other professionals all said he was “fine”. In the end, I had decided that any therapy I did wasn’t going to harm him, and it would help if he was on the spectrum, a LOT, because if I waited to do it, I would miss great opportunities.

Each day I spent with him, encouraging him to interact with me, showing him I was a helpful resource. You see, if he wanted something, he didn’t motion to me, approach me, or try to communicate what he wanted. He just screamed. I then followed by frantically trying to figure out what he wanted and give it to him. I was helpless… Useless to him… That’s how I felt. Every day I worked harder, got told again that he was “fine” and felt worse and worse about myself. I was digging myself a pit of despair, hoping to hide forever as I was helpless to continue with what I was doing. I couldn’t comfort my child. I was pretty useless with finding out what he wanted, so communication sucked, and my days were filled with screaming and rejection. This was NOTHING like the baby shampoo ads!

Then one day it happened: someone got the courage to talk to me. It was one of his Gymbaroo instructors. I had NEVER mentioned anything to her. I was pretty guarded about it back then. I might have seen lots of problem behaviours, but I was careful about mentioning them, unless with close family or medical professionals. This was the first time someone said something to me, completely unprompted, and yet it was a list of only a few things I’d noticed. She had seen how he HAD to do everything with a ball in his hand. She had seen his rage when things didn’t go the way he wanted to. She had seen me struggle as he was violently enraged. She saw my dedication. For the first time someone wasn’t treating his behaviour like it was my fault. She mentioned all the things I had long ago noted as different for him. His ball obsession, inability to distract him. His difficulty with transition between tasks, even though they were predictable from previous experience. She mentioned that word “Autism”, and my life changed.

Suddenly those doctors who told me his rage response was most likely learned from me, by observation (what?), the family members who told me that I was just ‘looking’ for problems due to my Psychology background, so of course I was seeing them, suddenly the doubts other had put into my head were all irrelevant, because someone else saw what I did. What I had seen from his very early days. As soon as I stopped doubting myself, I was ready to work. It was time, because as a parent of a child on the spectrum, I had the golden ticket. I COULD be his 24/7 therapist, so that’s what I became. I had a permanent run sheet in my head with behaviours to extinguish, procedures he had to learn, and I bought educational and therapeutic toys regularly, targeted at his learning and focus at the time. I bought every colour, size, material and weight of ball I could find, and began to use them to teach him everything I could.

It’s been about 8 years since that day, and my boy Taz is now 10yo and attending school in his appropriate grade level. He struggles with friendships, but has a small core of regular people in his life and shows more and more learning as time passes. He has a diagnosis now (since he was 4yo), and he is thriving, amongst structure that supports him, including activities, school and family & friends. I hope to share with you some of the therapies that helped, and to support parents walking this path by sharing my emotional experience. I truly hope that this will help others to feel supported on their journey too.

If you would like to discuss the ideas in this post further, tell your story, or share your experiences, please join us on our Facebook page.
Please be respectful of others at all times. We are all on different journeys.

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