Connections

pixie · Connections

Does your child have a diagnoses or is your child's condition a mystery?

Maybe there are others with the same or similar symptoms. Talk about them here and maybe you will find others with similar symptoms to connect with.

pixie · Undiagnosed

A great website.

They also have a forum but it doesn't seem to be working. Feel free to post here about your child with an undiagnosed condition and maybe we can connect a few with similar difficulties.

http://www.undiagnosed.org.uk/

johnvb · Undiagnosed

Hi Pixie

Our son is 6 and undiagnosed. He has a combination of learning difficulties, tremor, gross motor delay, large head, cystinuria (a kidney disorder that makes him prone to kidney stones) and now seems to have some autistic tendencies (though mild). I'd love to hear from anyone whose ever come across a similar set of symptoms!

pixie

I hope you find someone to connect with John.

If you are not already a member of SWAN I would recommend becoming one.
The lady who runs it is lovely and will help with connecting people as much as she can.

johnvb · SWAN

thanks Pixie, we aren't a member of SWAN. Definitely sounds like a good idea!

welshie

Daniel hasn't a diagnois big problem here in south wales dan is on the autistic spectrum but noe severe enuf for them to consider diagnois due to funding

pixie

That seems to be a problem here too as mine didn't get a DX until age 21, 14 and 11.

I think that was to do with funding too.

Once the younger 2 were DX'd though they cost the LEA a fortune as one was shipped an hour away by LEA funded taxi and had 2 nights respite every week.

The youngest is in a private school funded by the LEA. (Around 40+K per year)

If only they had DX'd and statemented earlier it would have saved my daughter from all the mental health problems she has now and the bullying she suffered in mainstream.

I assume Daniel is coping well in mainstream. Some do but mine just didn't cope at all well.

They are both very happy now and my daughter is appying for a job as a teaching assistant in a special school.

There is light at the end of the tunnel.

welshie

Strangely enough Daniel has always coped well in school we were really concerned when change to high school but he suprised us and got on really well not sure if it helps that its obvious he has some problems so people awareand he'd been statemwnted since he was four years old.With Sarah it was a different story took months for the school to place her in a suitable class she just couldnt cope she became isolated and depressed she was bullied and just seemde at breaking point must say when i arranged a meeting with the school they were fantastic but that couldnt stop the bullies.
Thankfully thats all changed and she is a different girl done to tae-kwon-do we can not believe the girl we have now it so fantastic to see she is so confident and happy and it's helped in school in all ways we are so grateful to see we were so concerned we'd lose our girl but now we have the daughter i always new was there underneath

pixie

That's great to hear Rachel. It's so hard when your child is being bullied or suffering because they can't cope with mainstream.

We ended up home educating one of ours until he was 11. The LEA finally relented and gave him a lovely private school local to us. He's very happy there.

My daughter was so badly affected that she walked out of school when she was 11 and refused to go back. She was close to suicide by that stage so we kept her at home for 3 and half years until the LEA also gave her a lovely school an hour away.

I'm pleased your two have found their way through and are now happy and settled.
It makes a great difference to family life too when the kids are happy and settled.

welshie

It does make a great difference i was so afraid for Sarah at one point the school were fantastic i must say they were concerned too and helped as much as the could, just so glad she had found something that has given here the confidence and strength to get through

Connections

Undiagnosed

Undiagnosed

SWAN