Monday, 28 December 2009
I was in two minds about taking Lyla to the Christmas Carol Service at St Paul's Cathedral. I love St Pauls and find it a very beautiful and spiritual place. From an autism point of view, the sounds and sights and sheer business of the place could be too overwhelming for an autistic person like Lyla. But I like to give her a chance to experience new things and she loves singing so thought I'd give it a go. We could always leave......
As it was a children's service I wasn't too worried about her behaviour would be received. I remember somebody commenting on the fact that David Cameron included his disabled son Ivan in family occasions and took him out in public. And why on earth shouldn't he? There seems to be an unwritten law that we should keep disabled children hidden away. Why? There's something very sinister and dehumanising about this notion that disabled children are somehow shameful and I don't intend that Lyla should live her life hidden away. She has as much right to experience life as anyone else.
Other parents I know with physically disabled kids say that they find it hard that people don't acknowledge their child. I find the opposite. We tend to get loads of stares as Lyla looks 'normal' but her behaviour is way off-key. Lyla enjoyed singing the carols but didn't understand a lot of the rest of it and found it boring. So she started singing during the readings. It wasn't particularly disruptive as there was a cacophony of baby noise. Then when the priest said to pray for people we've lost she shouted out- Oh God well, we're not gonna pray for Grandma Doris cos she's dead!! We got a lot of stares, mainly from other parents. I think in fairness they were trying to figure her out. Over the course of the service, the stares went from benevolent (haven't you got a handful there?!) to curious (Isn't she eccentric?) to embarrassed (Blimey, there's something serious up with your kid- I can't look you in the eye!!!!! ) Because we don't often see autistic kids let-out, it's not something that people are familiar with, so I can kind of understand.
My hope is that with more exposure to normal situations, Lyla will eventually learn some of the social skills normal people take for granted. And other people can see that autistic people like Lyla are very much loved and valued by their families and friends.