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SN children

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

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Original poster

Does it ever end??

15 replies

sparklymieow · 02/12/2004 22:34

DS has to use gaiters, he has had them for a few weeks now, he has to use them at night, Physio came out yesterday, and said he needs a night splint for his left leg. She also measured his legs and discovered that his left leg is 2cms shorter than his right and she has referred him for get a raiser put into his shoe.
He has been off school yesterday with a tummy ache, and today as when he got up I noticed he had bloodshot eyes, just the lower part
of his eyes and thought he was tired, when he is tired school is harder for him, and we get a phonecall to pick him up. His eyes haven't improved all day so going to keep an eye on that one (no pun intended!!) Also he has got worse and GOS are keeping a close tab on that. They keep saying that his pattern of CP isn't typical, but even the damage they saw on the MRI wasn't typical, nothing make sense...
DD1s advisory teacher has told the nursery that they can't apply for ear-marked pupil funding for her, the next school has to, so she will be going into school without support. I am still going to try and get a statement, but that will also have to wait till she is in reception class, and the school get to know her better.
I hate special needs, its nonstop and it feels I am being pulled in all directions.
Sorry feeling sorry for myself

OP posts:

blossomgoodwill · 02/12/2004 22:37

{{{hugs}}} mieow. I want to know why can't dd1 have a statement yet??? Surely they should be applying for it now as the sooner they get the funding the better! My dd got her statement at just over 3 and the only dx we had was a speech and language delay/possible disorder.
Hope ds's eye gets better soon.
BHxxx

Original poster

sparklymieow · 02/12/2004 22:39

I have no idea...

OP posts:

blossomgoodwill · 02/12/2004 22:41

You do know mieow that you can apply for a statement yourself don't you? You write to the lea and request dd1 is assessed. It is so important as without a statement nothing is legal whereas a statement is a legal document and they have to provdie everything on there!

Original poster

sparklymieow · 02/12/2004 22:44

I know that, but its easier with the support of the schools. Which we don't have. She does fit the critrea for EPF, but not Statementing, Herts is one of the hardest county to get a Statement in.

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Chocol8 · 02/12/2004 22:45

Sparklymieow - you have EVERY right to feel sorry for yourself hon, and don't let anyone tell you otherwise!

I'm sorry, I don't know anything about your ds's disability and not alot more about statementing. I have just come back from a meeting about statementing where there were "professionals" and concerned parents of SN children. There was sadly a very big divide between "us and them" and at a rough count - 99.9% of the parents there were having to fight for every right for their child - me included. I'm honestly not trying to depress you but it is a very real fact...that's why there's an SN board on MN - to give support at our worst times.

It sounds very confusing and I do wish I could help - I also hope that your ds is feeling much better soon. I know someone who can help will be along soon to help you, but meanwhile all I can do is send you an extra big ((((((((((((((hug)))))))))))))) xxx

janeyjinglebops · 02/12/2004 22:48

I don't know why they won't statement her now, it can be done for SEN if they are identified beofre formal schooling. How about through your GP?

Kristingle · 02/12/2004 22:50

Chocol8 is right - you fight , fight and fight for everything. Then you get depressed, feel like giving up. But you pull yourself together, get support from others, pray, do whatever it takes and then you go and fight again. Coz only you care about your child that much.

sparklymieow · 02/12/2004 22:54

This reply has been deleted

Message withdrawn

Original poster

sparklymieow · 02/12/2004 23:00

Am eating Choccy atm

OP posts:

jakbrown · 03/12/2004 07:44

{{{{{{hugs}}}}}}
Sorry to hear you're having such a rubbish time. You're allowed to feel sorry for yourself. I thought you could get a statement pre-school (not easy, but feasible)? DD got a statement at 2 and 9 months.

misdee · 03/12/2004 08:31

mieow, can they do further tests if they arent sure about the kids dx? not a pleasent thought i know, but if GOSH are questioning it then it should be looked into further.

Original poster

sparklymieow · 03/12/2004 08:43

They keep questioning the dx, but when they do the MRis again, and blood test, it all comes back as CP. But what if they are testing for the wrong things.? I am keeping an eye on DS' eyes as it can be an indicater for a genetic disorder. They seemed better today. He has gone to school today.

OP posts:

misdee · 03/12/2004 08:45

what genetic disorder?

DingleAlltheWay · 03/12/2004 11:21

Oh mieow!! What can I say? So sorry to hear you're having such a hard time of it ATM. {{{hugs}}}

SantaFio2 · 06/12/2004 09:28

mieow, have you seen a genetic counsellor? I was just wondering if genetics might be able to help you a bit better? Either rule it out or test for certain syndromes etc.?

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