I have read some books about autism and my favourite is by Charlotte Moore called 'George and Sam' which probably gives the real truth about the daily highs and lows of autism. But to be honest there weren't too many lows from what I remember as Charlotte's very positve ability to turn things round about her sons was inspirational. For example she talked about how her sons don't answer back and all the other negatives a parent can get from their children but are not in this vein when confronted with a child with autism. Her boy Sam sounded just like Joel and I related much to her writing and her humour and it was a welcome relief from all the sentimental drivel a parent has to sift through about their children who have autism.
To some extent I agree wholeheartedly with Charlotte but at the same time I do want my son to answer back to me. I would love him to be sarcastic but I would be grateful if we could start with having a simple conversation. The best I get is something he learnt by rote a few years back 'how are you Joel?' to which he replys 'good' even if he's not so good. I'm still trying to get a conversation off the ground with him but feel guilty that I've temporarily given up reading to him.
I have given up because if I read to him he snatches the book off me and proceeds to turn the pages like a speed reader not really acknowledging the story as such just getting a kick out of the general way the pages turn and perhaps registering the pictures I'm not quite sure. I think basically once he's started turning the pages he needs to get to the end of the book so it's a procedure he has to carry out from beginning to end. Does this sound harsh? That's autism it is so crazy I can't be all American about it either.
The first book I was ever recommended to read when Joel was nearly three and freshly diagnosed with autism and newly started on an ABA programme in Sydney, was called 'Let me hear your voice, A family's Triumph Over Autism' by Catherine Maurice and I was a total convert to ABA and all the other therapies Catherine recommended. But I wasn't keen on the sugary way it was written and it lacked irony, humour and was too earnest and quite frankly unrealistic for every family who have a child with autism. It was a happy ever after story about autism and I've already mentioned I haven't got a 'happy ever after' at the moment. I am not getting that warm fuzzy feeling in my heart regarding Joel's autism. I'm getting the confused beyond belief feeling about Joel's autism. Like tonight for example. I have bought the children yet more electric toothbrushes as they mysteriously disappeared a while back (mentioning no names). So they disappeared this evening and I instantly knew where they were. On the roof. Again. Why? It's an autism thing and it kind of drives me insane. I know it's a tiny thing to deal with it's just a toothbrush or two but when you're having to play inspector Morse on a really small scale every day with regards to Joel's autism it kind of drains the resources. Kids do that anyway but ...
Regarding the Horse Boy book. Please don't say to someone who has a child with autism the following. Has he/she tried riding? Re the book about a dog who helped a boy with autism- I tried to get to the end but the pain and angst I had to get through initially mirrored my own life so I simply didn't need more angst at the time. I have made a note when feeling stronger to go back to that book as I hear the dog did miraculous things for the boy with autism. But please don't say have you thought about getting a dog? I know you're trying to be helpful but I have tried the horse. Joel goes riding weekly and there are no earth shattering moments. Joel enjoys riding now and no longer requests for the 'car' once he's on the horse., but I don't think we're going to get more than that. Nor are there any dog earth shattering moments other than Joel loving his Grandparents' dog in Cornwall called Blue and trying to ride it like a pony saying 'horse' much to the dismay of Joel's Grandparents. I have called the Horse Boy Camp and the cost for a week in a camp with the family was surprising so quite frankly I'd rather spend a week in the South of Portugal in the heat as opposed to damp Bodmin moor chasing miracles on a pony!
I have been recommended to read a book called 'For the Love of Ann' about a lady who according to Joel's swim instructor Chris was 'just like Joel' but grew up to surprise those around her as she obviously overcame a lot of her autism and so I've ordered it. I may even suggest it for my book club. Talking of book clubs I've just joined one and the book is so mundane it's almost enjoyable 'Mrs Palfrey at the Claremont' by Elizabeth Taylor is such a light read after reading all the books on autism the trials and tribulations of this protagonist feels like a walk in the park.
No comments:
Post a Comment