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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Famous parents with kids with SN

98 replies

ntt · 24/06/2006 09:52

I can only think of 3 - Jordan, David Cameron and India Knight. Can anyone add to this list? I'm really curious and I'd like to know what sort of care and education they choose (presuming money's not a big problem)

OP posts:
Jimjamskeepingoffvaxthreads · 26/06/2006 21:15

They might just want to protect her though. Dh shudders at the thought of ds1 being in a newspaper because he doesn;t like the idea of everyone looking at him and having lots of misinformed opinions about the child he loves.

Christie · 26/06/2006 21:16

This reply has been deleted

Message withdrawn at poster's request.

Jimjamskeepingoffvaxthreads · 26/06/2006 21:17

Also if she does have something like cp, then the extent to which she will be affected will still be largely unknown as she's still so little. I can quite understand why you wouldn't want papers crawling all over you when you were trying to come to terms with the whole thing yourself, and didn't even know the extent of her disability. I'd have been a basket case if I'd been dealing with the media in the early days of ds1's dx.

Thomcat · 26/06/2006 21:20

Hmmmmmmmmmmm. Did thnk that but feels more like hiding away, really, tbh, doesn't it. Make an announcement, you don't have to have him or her photographed etc. Don't have to amke it personal, just inform and tell people what he SN's are and what they mean etc.

Feels more like hiding away than protection to me, if it's true.
Wold like to think it's protection but and sure that's waht they are saying it is, if it's true, but bollocks.

If it is true I think they should be ecucating people.
Misconceptions are formed through ignorance.
I felt good when I told my story about Lottie to a few mags and hopefully hanged just one of 2 peopels conceptions of what it's like, who people woth DS are born to and so on.

hasbean · 26/06/2006 21:28

Has anyone mentioned Jordan yet?

Jimjamskeepingoffvaxthreads · 26/06/2006 21:32

But make an annoucement about what? "our dd may have cp, but we don't really know yet how affected she's going to be and what it means". Until you know what you're dealing with I don't really see that you can say very much anyway.

Thomcat · 26/06/2006 21:34

Hmmmmm again. How old woud kid be now???
Still feels like hiding it away, sorry, it just does.
That's my take on it, if it's even true.
We'll see aye.

Jimjamskeepingoffvaxthreads · 26/06/2006 21:38

She's about 3 isn't she? I'd do exactly the same in their position. Even now, my main concern would be in keeping ds1 safe, and I'd see his condition as no-one else's business. If someone wants to tell their personal story then fine, but I don't think anyone should be forced to.

DevilsAdvocado · 26/06/2006 21:46

I don't think she's as old as 3 is she?

Actually, there were piccies of the Queens birthday in the paper today, there were a few of Sophie Wessex and some kids at the Winnie The Pooh garden and I wondered why their daughter wasn't in the pic.

Piffle · 26/06/2006 21:46

I long suspected that the Wessex's little lass might have some issues, she has a very similar visual problem to my dd, also born at Frimley and also 3 yrs old. Lousie Wessex was transferred to St Georges which was also where dd was tx to after being suspected of having Noonan Syndrome. If it had just been a standard pre term delivery, she "should" have been tx'd to Royal Surrey.
I have seen them out and about in Virginia Waters and around that area quite a few times when I lived down south and when I've visited, she seems like a pretty nt kid with just the slightest hint of a syndrome perhaps, much like my dd, which is why I bothered to say
And FWIW they do not hide away per se.. I think there are strict rules about unofficial snaps of minors now.

Thomcat · 26/06/2006 21:48

3
Hmmm, might have to just agree to disagree on this one re the royals.

Too half cut to type what I really really want to say, so will bow out now.

Jimjamskeepingoffvaxthreads · 26/06/2006 21:54

Yes agree with Piffle. I've seen photos of her, and I was pleased to see that given her dreadful birth history she didn't look too badly affected by anything. I thought she looked amazingly "normal", and hope she is. If she has a condition, and if it's borderline mild/moderate it will take a lot longer to know exactly how she is affected (even if severe come to that, at 2 I was being told that my severely autistic son had nothing wrong with him, or if he did have it was so mild as to be hardly noticeable). I really have no wish to have a blow by blow account of any dx she might be receiving, that's something raw, painful and private.

amber5 · 26/06/2006 21:57

can't do links i'm afraid (computer illiterate), but there's a photo of sophie and (presumably) louise on the 'hello' pages about her. not v clear, but at least shows she's not entirely hidden from public

Thomcat · 26/06/2006 22:01

I don't think there should be blow by blow details of their situation either btw, just want to make that clear. just hate the thought that any SN's, of any kind, are being hidden away like it's shameful. Nuff said - by me - on this one now.

Piffle · 26/06/2006 22:12

she is 3 this November - Louise Windsor that is

charliegirl25 · 26/06/2006 22:14

Message withdrawn

bluebear · 26/06/2006 22:33

Aside for FIOFIO - Angelman's is really difficult to rule out by testing as, although most affected people have an easily tested type, some are negative to all testing.
Can't do links but if you are interested look here www.genetests.org/profiles/angelman and scroll down to table 1.

FioFio · 27/06/2006 09:12

This reply has been deleted

Message withdrawn

Thomcat · 27/06/2006 10:52

Morning Fio. No sore head, just aching bones

Good point re jordan having to keep setting records straight tbh and put it like that (and with the absense of alcohol!) Iyeah, i can see why too now.

eidsvold · 27/06/2006 11:10

what about all of us we are wonderful famous people and have gorgeous children with sn ( oh okay will wake up now!)

spidermama · 27/06/2006 11:35

I've got the untmost respect for Jordan. She's always been completely open about Harvey and it's been an education to so many people.

To see a strong and successful woman who's also a loving mum dealing with this sort of heartache is inspirational.

Davros · 27/06/2006 20:25

I also respect Jordan. She may not be my cup of tea but she is very honest about Harvey and clearly loves him and looks after him herself with family. Pete is great with him too.
I also totally respect Sophie Wessex and agree with Jimjams' points (no surprise there!). Apart from anything else, she is Patron of the National Autistic Society and does a bloody wonderful job.

albatros · 27/06/2006 20:38

Totally agree with Jordan being an inspiration and Sophie Wessex must make the choices that are right for her and her family.
However............... although she may do a good job as a Patron if the monarchy was abolished and the our taxes that are spent on propping them up were spent on childcare both NT and special needs I am sure we would benefit much more.
I don't know the full figures of how much of our money goes on them but on radio 4 the other day it was stated that Prince Charles recieves 3.5p per tax paying adult per day. (£16.50 ish per year from each individual) Is he so hard up ? Is not owning Cornwall enough of an income for him?
I don't know how much of our money the Queen recievs or all the other hangers on but I can think of alot more important things to spend it on.

albatros · 27/06/2006 20:45

Sorry didn't mean to hijack this thread I'll climb down from my soap box now

Pinotmum · 27/06/2006 20:57

Max Clifford the PR man has a daughter with a disability but not too sure of details.