Blue Sky July

[needmorecoffee]

Anyone read this book? I feel like I could have written it as she describes the hidden netwok of us mums with our children, the desperation.
And especailly how 'normal' never seems enough for those without disabled children but only we can see it.

There was a lovely version on Radio 4 a few months' back. I don't have any SN children myself, so I did find the radio version very illuminating.

I have read a few reviews as well as extracts from the book and an interview with the mother and I do wnat to read the book some day.

I'm about a third of the way through. Thing is, already she's been to therapy centres and the Peto Institute so I am feeling inadequate. If her child is juggling by the end I might just cry.
I also bought therapy books for kids with CP aimed at OT's and physios and not one bit says what to do if a child has no movement. It all starts from 'poor' head control or 'poor' reaching skills. Poor dd, can't even have CP like the books say.

I remember seeing an extract of this in the paper a while ago and I agree that it is beautifully written. There was one bit where the mother described the joy of seeing her son holding his own at mainstream school "like a kiss on my belly" and it was so lovely it made me cry my eyes out. Also, as you can see it has stuck in my mind!
NMC, I just googled the title to make sure I was talking about the right book (didn't want to make a fool of myself) and I came across this. Thought it might interest you, especially the last bit, after what you just said about feeling inadequate. Btw, it's not just you, I've stopped reading books about children who are 'cured' of autism 'by their mother's determination' for the same reason.

thankyou so much for that, just what I needed. I also realised that most parents who don't get a miracullous cure don't actually write books!
I di still feel bad about lack of conductive education but I have 3 other kids, one of whom has run away to live elsewhere cos she couldn't cope with the stress that is our life with dd. And last night ds2 picked up Blue Sky July and he couldn't read past the birth because it reminded him of dd's and he still can't deal with even thinking of that day. He's 12 and was 9 when it happnened. I hadn't realised that he was so affected heck, I still can't write a birth story as its too painful for me.

I read this and nearly posted about it a few weeks ago. Very well written. Made me cry heaps. Her story isn't mine but a lot of it resonated.

As for the 'miracle' therapy stuff. I of course wonder whether I could have and should do more with dd1. But I also think you have to have a life. And you know, later in the book she does stop doing a lot of the therapies. I think she realises that she was just grasping at anything when infact some of it didn't really do anything. And a lot of chasing therapies relies on money that some just don't have.

For me,this wasn't really a 'miracle' book. It was more about a woman coming to terms with what has happened to her and accepting who her son is. I kind of felt Joe's progress was by the by. Of course it is fantastic that he is doing so well but I got the impression that by the end of it, that didn't matter so much to her anymore.

"Joe?s next venture is to swim with dolphins. This will be well-deserved holiday for Joe and his mother
but while they are away there will be some mothers of disabled children and teenagers lying awake in
the small hours feeling guilty and depressed because they did not work hard enough to help their child
develop in the early years. "

that brought tears to my eyes

Pixel thanks for posting the link.

I found the radio adaptation very moving but although I have not read the book, I don't think it gave enough weight to the fact that Joe had more capacity to develop than the very grim prognosis given at the hospital - ie I am sure some of the treatments did help but they wouldn't be the answer for all children - if the underlying problem was more severe.

Very interesting link Pixel.

I have known about this book for a while, and am not sure if I should read it or not - Pixel your link makes it pretty clear maybe I shouldn't. We have tried a lot of different things for DS2 (not as much as this woman though) and while some of it may be helping, I think the rest of us in the family are suffering for it.

Hey I decided to stop reading Memory Keeper's Daughter even that was bad enough!

Pixel - your link has said more to me than the book probably would! I think I'll give it a miss, there are too many other books to read...

I read this, and it brought up all sorts of emotions, at times I just sat there sobbing (much to DH's consternation).

It's a beautiful book, and I think a book that parents of NT children should be encoursged to read to help them understand that children with disabilities are exactly that, and not some separate species. Not that all think that, but a lot do, IMO.

I ordered this book when I read this thread the other day. It came in the post an hour ago. I picked it up 10 minutes ago and read the first few pages to page 27.

I'm suddenly a basket case! Crikey I should be studying (am so behind) and instead I'm sitting on here balling my eyes out. That's reall abnormal; we've even had a good week. DS hasn't hit us at all this week; he's been lovely. Had a bit of a rough morning - I fell asleep last night without getting everyone's school uniform ready so this morning was a bit rushed and stressed and if anyone raises their voice before the school bus arrives to collect DS, that triggers him off and he starts with the violence so I'm a bit worried about how he'll be at school today.. but there is absolutely no bloody reason for me to be sitting here balling my eyes out. I don't even cry as a rule! No point really; it never makes me feel better.

DH is going to bloody kill me for buying this book. I just skipped ahead to near the end and read a description of Joe that sounds almost exactly how DS is now, at 7. (Except no damage has ever shown on DS's brain scans, oddly, although not uncommonly it seems.)

I'm glad I bought it though. I just want to read it all now but I have less of the emotional strength required to do so than I do the time!!

My DH told me off for reading it too, he doesn't understand why I have to read so many "miserable" books; I think he thinks I'm just wallowing in feeling sorry for myself and he's worried it'll tip over into depression (not unreasonable, I was very depressed after DD2 was born).

I actually find reading about other people's experiences makes me feel better about life though, not so alone IYKWIM.

Yes coco, they help me too, long term, in ways that I can't explain. I do sometimes wonder why I read them though. I often wish I could more like men seem to be.. just plodding on, and dealing with "what is" rather than "what might have been" or wondering "WHY??!". I don't know which approach is the "best" but I can't help the way I think! And yes, depression always lurks, waiting to get me when I'm not thinking positively - I know the feeling.