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Bittersweet and Autism

Posted by David on May 15, 2013 in Autism, Parenting |

A few weeks ago Ty asked me what “bittersweet” meant. He had been taken in by “Bittersweet Symphony” by The Verve after hearing it a few times and wanted to know the definition of the word. I tried to explain that it’s when you experience something that could be both good and not-so-good at the same time.

I can tell you that being a parent of twin boys – especially when one is on the Autism spectrum – is often full of bittersweet moments.

autism, ice skating

Even though he didn’t venture far, it was a huge victory just getting Stone in ice skates and to the ice!

Last week Ty and Stone’s school held a spring concert for first and second graders. He was very excited for the occasion as he and his class had been practicing extensively leading up to the show. We arrived as a family in the auditorium and it as buzzing with excitement, anticipation and of course, much chaos ahead of time. We saw Stone’s special ed teacher and she offered to take Stone to the stage with the other first graders and help him stay in place if we wanted. It was only then that Renee and I both remembered and realized again that Stone was every bit the first grader as the others and should be participating in the concert if it wasn’t for his speech delay. We graciously decline and said that Stone would sit with us during the show. He did sit with us and behaved quite well considering it was 30 minutes of children singing.

But it was during the concert when those bittersweet feelings washed over me again. As I watched Ty up on stage performing and having a blast I also looked down at Stone next to us and wondered what he must be thinking and wondering not being up there. He knows all of the kids who were performing – he sees them everyday (even if he doesn’t interact or socialize with them). It was a moment when I desperately wanted everything to be “normal” for us – even if it was just for that occasion. I would give anything to see the twins singing and performing together.

Fast forward to tonight. Renee had a work engagement that went late into the evening so I had the twins to myself. I had promised Ty I’d take him ice skating because Wednesday nights are open skate nights and a good chance for him to skate for fun (usually other kids from his hockey league are there as well). What usually happens is that Ty will skate while Stone and I hang out and wait for him – Stone usually with his iPad as entertainment.

But tonight Stone showed a real interest in going out on the ice. He kept trying to sneak onto the ice wearing his shoes so I told him if he wanted to go out there he had to wear ice skates just like everyone else. I had tried to take Stone ice skating one time before more than two years ago and it was an absolute nightmare. At that time Stone was extremely sensitive to any kind of new shoes (or clothing) so as soon as I even tried to put on the ice skates he was screaming and crying. Frustrated and embarassed I eventually forced the skates on and tried to get him on the ice – but he continued screaming and crying. Like I said – it was a disaster and left me leery of trying for a long time.

Tonight though, Stone seemed ready. I asked him if he wanted ice skates and he repeated “ice skate.” I took him to the skating rental counter and showed him the skates and he reached out to grab some – it was clear he understood the task at hand. So I paid for a pair of rental skates and went about putting on the skates again – unsure how he’d react and respond given the previous experience. He was actually smiling and excited! Even though I could tell it felt different and weird for him, he didn’t resist at all and willingly walked with me to the ice. The fact that he was able to wear the ice skates and was comfortable enough to just practice walking around was a huge victory for me. I led him to the entrance to the rink and encouraged him to try the ice.

He was a little too nervous and scared to do too much – but he would occasionally

Sometimes watching is almost as fun as skating - but I know Stone will love it once he gets out on the ice eventually!

Sometimes watching is almost as fun as skating – but I know Stone will love it once he gets out on the ice eventually!

stick a foot or two out on the ice and then quickly pull them back. But he was laughing and smiling the whole time – he was obviously having fun with the new experience and enjoyed watching all the other skaters whizz by. I experimented with him for about 20 minutes before calling it a night and heading home again but the experience absolutely made my week. I was again reminded of how important progress is in development – any kind of progress! And with this experience I am totally confident that we’ll eventually be able to get Stone out on the ice and skating like his brother.

Tonight was very much a sweet experience – nothing bitter about it at all.

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