Monday, 28 December 2009

Christmas Carols

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.

Happy Christmas!


  1. You know something,Rachel? You are just awe -inspiring. While the rest of us winge about minutiae...our looks,money,lives just roll up your sleeves and face life head on and take it by the horns. I don't think I have ever met a more strong,beautiful woman than you. You have a heart of gold. Stay you. xxx

  2. Inspirational in every way. Lyla is lucky to have you as her mummy.

  3. Hi there,

    I just found your blog today and thought I would leave you a note.

    It sounds like your daughter did great--not just with her behavior (my boys would've been WAY worse) but as an ambassador for autism. You are absolutely right that we should have our children experience anything and everything they can. We might just educate someone in the process.

    Thanks for sharing!

  4. Hi, my friend just linked me to your blog. I have a daughter with autism too, and your post is a very familiar scenario to me.

    Re: your last paragraph, perhaps it's not just our kids who need to be socialised, the people who stare will perhaps learn something too. Or at least the charitable part of me hopes so, I know how ignorant some Other People can be.

  5. Thanks for stopping by my blog today! I agree that hopefully with more exposure - both for our children and the general public - more positive responses will occur. Awareness leads to understanding! Best wishes to you.

  6. I just came across your blog and I want to thank you for sharing and to agree that you are indeed awe-inspiring. Our Stephen loves singing in Church and we get the same mix of stares and comments.You are right that although it can be difficult, we need to get out and about with our kids, give them as full a life as possible. The more we do of this, the better it will be for everyone. Thanks again.Happy New Year!

  7. Its hard, we have to bring our children out for them to learn, but sometimes the 'stares' are a lot to handle. Hopefully our skins will thicken over time and our children will learn too. Well done to both of you:) Happy New Year. Jen


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