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

Original poster

DT2 was yesterday

16 replies

jambuttie · 17/02/2006 08:23

put on special needs register.

Without diagnosis I may add

I kinda got freaked out a bit and wanted to know what was happening with him, but caouldn't find out

Thankfully I had a friend there for support but it never really hit me until I said to another friend ???? is on special needs register and I cried.

Thing is when I go back to work tonight and all my colleagues ask how it went and I say went ok hes on the register
They say Oh what for
I say don't know how stupid does that make me feel/ look

Sorry just wanted to have a moan and see what your experiences are too

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blueteddy · 17/02/2006 08:26

Message withdrawn

Original poster
jambuttie · 17/02/2006 09:45

No he was assesed at CDC by peadsiatrician, OT, Salt and has been assesed also by physio.

Pead put him on special needs register.

he was also measured for his boots with orthotist last week

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blueteddy · 17/02/2006 09:49

Message withdrawn

Miaou · 17/02/2006 09:52

jambuttie, you don't need to say you don't know, just that he hasn't had a specific diagnosis. The experts presumably work on the "symptoms" (sorry wrong word I know) rather than waiting to find the underlying "cause" and for now that means you can access more help/support than you could before.

I have no experience to offer you, but from what I have read and can imagine, although this is probably a step forward in practical terms I guess it's a bittersweet pill. I hope your RL friends are able to support you as well as MN

Original poster
jambuttie · 17/02/2006 10:44

miaou thank you.

I am going to post a message onto this in a moment which hopefully will be a lot clearer

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Original poster
jambuttie · 17/02/2006 10:45

Morning all,

please can you help me. yesterday dt2 attended an assesment at child development centre. By the end of the appointment the peadiatrician had informed me he was being out on the special needs register which I had to sign to say that was the case.

Thing is no diagnosis was given. He is only 2 and was 11 weeks prem 2nd twin. SALT are attending our house next week to have lunch with him to try and help him chew and swallow with difficulty. OT is coming out on 6/3/06 to asses house and see what support aids he needs. Physio has confirmed low muscle tone and joint hypermobilty. Orthotist fmeasured him for boots last week which we are waiting delivery on them.

How/why is he on the special needs register then if no diagnosis has been given yet? Does this mean they are onto something and will wait the 6 months before telling us just so they are sure?

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Original poster
jambuttie · 17/02/2006 11:11

anyone?

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Original poster
jambuttie · 17/02/2006 13:38

please

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maddiemostmerry · 17/02/2006 13:59

In my area they have a panel that handles all the info about children with SN and referrals on to different departments. A parents needs to sign in agreement to this. This ensures that all agencies involved know what is going on Could it be something like this?

My youngest has no dx but is known to have sn and the idea is that all the involved teams will meet togeteher and decide on dx.

Hope this helps a bit.

Original poster
jambuttie · 17/02/2006 15:41

oh thanks for that hun. not sure really in all honesty.

I am feeling 6 months is a long way away though before we are back at the clinic for dx. although as my friend pointed out today it will fly by with all the individual appts in between

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maddiemostmerry · 17/02/2006 16:01

I know its really hard JB, but try not to focus too much on a dx. The important thing is to make sure he receives what ever support he needs and that he is known to the system.

Lots of sympathy though, as I know how hard it is.

littleredcorvette · 17/02/2006 16:27

I couldn't read this without posting.

My ds was in a similar situation - despite all the blood tests, scans, x-rays, it was nearly a year after he was born before they discovered that he had a rare genetic condition. Again just like your son, he was seen regularly at the CDC (Paed, Physio and OT) before any diagnosis had been made. From personal experiece I know that you just want someone to tell you the reasons why your child has Special Needs and waiting for a diagnosis is very hard.

Just like Miaou said, although he hasn't got a specific diagnosis it means that he will get more help and support now that he is on the Special Needs register.

Original poster
jambuttie · 17/02/2006 21:42

littlered is your ds ok? did you get a diagnosis

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Original poster
jambuttie · 17/02/2006 21:42

littlered is your ds ok? did you get a diagnosis

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Davros · 18/02/2006 20:08

I think the SN Register is a SOcial Services thing and it just means that your are known to the systema and, more imporantly, they can PLAN services if they know more about the children in the community with SN, e.g.how many, who and what issues they have. HTH

Original poster
jambuttie · 19/02/2006 14:14

thanks davros

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