Monday, February 15, 2010
Sometimes Autism sucks!
Recently we decided that Button would not be making his First Communion this year (or any other year, in all probability). It wasn't exactly a tough decision, but it did open up a bit of a Pandora's Box of emotions that I had thought had been firmly laid to rest.
As I have mentioned before, I am not particularly religious. I believe in a higher power, but I'm not a huge fan of organised religion. I think if you're a good person and treat others with respect and dignity, well, that should be enough for anyone's God. But Communion is more than a religious event. it's what 8 year old boys like Button should be doing! A rite of passage, that was part of my vision for the future for him in the days, months and years before he came home. I have very happy memories of my communion day, and quite simply I wanted the same for him.
In the run up to a child's First Communion, there are 5 or 6 special masses arranged where the children all sit together and do the readings and prayers of the faithful. Two weeks ago we went off to mass, fully prepared with his favourite small toys, sweets and the promise of the iTouch for being quiet. It was a disaster. He was poking the lady beside us, shouting and trying to escape from his seat. After about 10 minutes (that felt like 10 hours) we decided enough was enough and made a hasty retreat to the car, with Button kicking and hitting various members of the congregation as he made his way up the aisle.
As I sat in the car waiting for Mr Taz and Belle, I just knew that Button was not ready for this. He simply cannot cope with crowds, and having to sit still for any length of time. And suddenly I was sobbing, as it hit me just how much his autism affects him and us as a family.
We go through our daily life thinking that Button is doing great (which he is), basking in the lovely comments that have been coming home in his Book recently and loving his funny, quirky nature. We live in a little autism bubble. This is our world and we know no different. As Belle grows up, we're getting glimpses of the "other world", but for the main part we potter along thinking everything is going to plan.
Then Wham! one day something hits you, and you realise that you're not as ahead of the game as you think you are. The difference between Button and his peers is remarkable. I watched those little boys and girls sitting quietly with just the odd giggle and murmur of chat. Their hands piously joined in complete innocence and joy, fully aware of the importance of the day they were preparing for, and my heart broke.
I'm generally a very optimistic, positive person. but that day I grieved for all the things Button will never enjoy. Birthday parties, trips to museums, pantomimes, playing football on the street with his mates, these things that you dream about and imagine your little boy doing. They are not part of his life, and in all probability never will be. It sucks.
He is the happiest, most innocent little soul I have ever known. He doesn't care one bit about those things. And 99% of the time, neither do I. I am not at all bothered about the actual communion, it's just a very stark reminder that life with Button is always going to be different from how we had pictured it to be.