Last week I attended an Autism conference by KidsAbility in Waterloo and had the privilege of listening to a very honest, heartwarming and heartbreaking dialogue between Dylan Thomas (a 22 year old U of W student with Aspergers) and his mother, each describing their point of view of what it was like growing up with Autism. The closeness of their relationship as mother and son as well as their unique perspectives gave me moments of laughing my ass off with Dylan’s straight shooter depiction of thinking of people as animals to that large lump that gets in your throat as his mom described the constant challenges they faced in navigating the school system on Dylan’s behalf.
That presentation as amazing as it was, somehow turned me into a sobbing mess on the way home, an ache in my heart that felt so heavy as I thought about the road ahead and what we might have to face as T grows up.
That was Friday and it somehow opened the floodgates for the weekend as my most amazing husband sent me off to the cottage with the girls to regroup, relax and reconnect with lovely ladies I hadn’t had a chance to catch up with for quite a while. These are beautiful friends, women that I know very well, enjoy their senses of humour, and can easily talk about anything. Yet I found myself, worn out from a fairly exhausting month of work, unable to prevent the crack in my voice and the floodgates to open when we were having a simple conversation about Autism. I’m not sure if it’s that I don’t want to talk about it in case in starts to ostracize people or if I don’t like talking about it because I don’t want it to define who T is and who we are. I surprised myself by admitting that anyone who gives me that sympathetic, “I’m sorry” head tilt, I want to slap and I find myself putting the word “Autism” out there as almost a dare for anyone to react in a way that is anything different from normal.
T is doing really well right now. He is engaging in social conversation, he is doing way better at looking people in the eyes, his frustration freak outs are almost non-existent. He is doing well because we are working hard at managing a household that works for Autism. We go to Speech Path weekly, we practice at home, we work with his teachers, we know what sets him off and create plans that don’t contribute to those ugly moments.
But he still has Autism.
He still has repetitive behaviours, over-stimulation issues, sound and texture sensitivities, communication and social challenges.
We always try to take a very positive approach to this journey but I have to admit, after a month of school field trips, volunteering in the classroom, school dance, and most recently an end of year performance where the kids go to dance, we are emotionally exhausted. Every time we go to one of these events, my heart is FULL of love for our little guy..we feel so incredibly proud of what he has achieved. But there is a part of me that is really sad…sad when he checks out into his own world in the middle of a performance, sad that kids aren’t connecting to him in school activities, sad that he is left out…sad because we can’t make a difference in those moments.
I know this just a moment in his life but its one I wish we could speed through and get to the other side.
After hearing the Thomas’ story, it seems like the road is a long one.