It's funny you should say that Fio, I actually emailed to Gess about a book exactly like this a while ago- really just the voices of parents, plus a big director of support organisations and people who will help you through the minefield - eg IPSEA.
The idea would be to help parents whose children have either been born with special needs (eg Downs) or parents who have later discovered their child has special needs (eg an autism dx)
A great idea- and I bet JKP would publish it......
I think diverse views/experiences would be helpful as well- so any number of people could pick it up and think 'wow that;s like me'. I remember the first time I came across a book with someone like ds1- it was 3 years after dx- 'Lucy's Story' - it was amazing to read and I treasure that book. It would be my desert island one.
I think it is a brilliant idea. I guess that there must be a process following dx similar to the stages of grief following a bereavement and it would have been so good to know this. DD's SN are fairly mild but we've still found it really hard as a family, it's only recently I've found someone locally whose DD has similar things that I realise how actually we're not completely rubbish at coping as I thought for ages.
I'd like to volunteer DH to build a website if needed, I'll tell him after he's had some more caffeine !
I'm in for this - think it's a great idea. DH has just read a book called 'Different Dads', which is a collection of pieces written by fathers of children with SN. Perhaps a format like that? At the end of each personal article, there's a short piece about the particular SN described. When I read it, I enjoyed the personal bits, but felt there could have been more factual stuff. So maybe a format combining personal stories with factual info would be good? I'd love to write something about a sceptic's conversion to ABA!
<sneaks in> Sounds like a completely brilliant idea to me. It could be publicised to clinical genetics services and so on- I bet they'd love to have something to recommend when people ask about reading material <sneaks out again>
I don't see why it can't be MN's new book. They have done books with info/advice on NT kids. It would have to be checked carefully by more than one parent of an SN child though, but I'm sure we could do that????
I think though that it's essential that it gets input from all sorts of SN families and all sorts of conditions: there is this perception in the NT world that all SN is this big amorphous mass of kids with similar (dreadful) problems and in fact they're far more different from each other than the most diverse NT kids and I would never think my experience with DD1 would equip me to understand someone else's experience - though at least now I know what I don't know iyswim.
In fact, one of the things that I have hugely learned from Mumsnet SN is that although we have huge amounts of things in common, those things are mostly about the system and how other people treat you. How it affects you and how you handle it is very diverse and largely dependant on how severe/medical/behavioural the diagnosis is iyswim.
I'm waffling again, aren't I? Er, as I was saying, count me in!
Yes that's very true r3dh3d. Even conditions with the same name can be incredibly diverse. I mentioned 2 books earlier- Lucy's story was the first time I'd ever read a book about a child like ds1- and by the time I read that I'd been reading autism books for over 3 years.
I would love to be a part of it - my DD's condition is pretty rare, and the hospital where she was born has a baby born with it once approximately every 3 years. So as you can imagine we didn't have an awful lot of specific information (though the general support for SN was excellent).
I was incredibly naive about the whole SN world I had joined, even though I am a health professional. A book about it would have been really welcome.