A very basic question - what does Special Needs include?

[emkana]

Reading the "You know you have a special needs child when..." thread has made me think.

Ds was born four and a half months ago with a skeletal dysplasia (dwarfism). There are many, many different types of skeletal dysplasias and he has not yet been "properly" diagnosed. Atm all we know is, from looking at him, that he has a small-ish chest, and short arms and legs. He is, however, a normal length and weight for his age, just a bit out of proportion.
So far the problems we have had have included lots and lots of chest infections (probably, but not necessarily, related to his condition) and he's a bit slow where large motor skills are concerned - as far as you can tell at this age.

From reading about skeletal dysplasias it is very likely that ds will be NT. His problems will be mainly of a physical nature - basically, he will be short, and he will have related health problems, like chest problems or arthritis or other things, but which exactly we don't know yet.

Now, and this is my point, (sorry this is so long-winded), in a way I feel sort of a fraud in posting on the SN board because I feel that the problems we have/are going to have are so different and somehow insignificant in comparison to others on here. So my question is: What does SN actually include? How would you define it?

In terms of the education system SEN is anything which is not covered by the 'normal' system, andy child who's needs are 'extra' if you will.

So, while a child who is deaf may very well be NT she/he will still have SEN, Ditto a child wirh CP, or visual problems.

There are the 'physical' sen if you like, and the learning/social sen.

But they are all , IMHO, SEN.

I'm very good at paranoia actually.

It's quite difficult isn't it?

I post here occasionally but don't necessarily feel that dd has special needs, rather she needs extra care IYSWIM. She is on the SN register at school and we claim DLA.

I don't always feel at home here though. I suppose the MN SN board has quite a high proportion of children with neuro issues rather than medical/illness and maybe that has a bearing on how I feel.

I do know that if you post here Em, you will get support and understanding. People will 'get' your worries rather than dismiss them.

I received a questionnaire from occupational therapy this week, which asked "In which areas does your child need more help than other children his age - feeding/bathing/dressing..."

bit pointless really at four and a half months, innit?

Hi emkana! My DD has skeletal dysplasia too .......or so it is assumed as we have no exact diagnosis either.
Prepare yourself for many more questionnaires of that type!

reiver - hi there! Would love to hear more about your dd!!! How old is she?
Would you like to exchange e/mails?

My address is emkana at gmx dot net

Yes! I'll email you now.

Got your e/mail and have just replied!

I'd post wherever you think you're likely to get the best answer. For example if in the future you had questions about DLA then here would be best, or if you've just bumped into the competitive mum with the child dancing at 6 months old then again probably here would give you the most helpful response. Othertimes health might be a better bet (for example I've just posted an epilepsy problem under health- although lots of the lovely SN board have answered me ) Othertimes the main board. I don't think anyone is gatekeeping though

Emkana - not trying to hijack your thread or anything, but have you heard of the Child Growth Foundation. One of their categories (if this is the right word) is Bone Dysplasia. I joined because my DD has an overgowth condition called Sotos Syndrome. If you join (it costs £15 for a year's membership) you get quarterly newsletters and they hold a conference once a year. You might not want to join a "foundation" but I found it very enlightening - if only to prove that everything I read that I felt was quite negative did not particularly apply to my DD.

Thanks bumblelion, I sent off the membership form on Saturday!

Hope you find it as helpful as I have.

Emkana - I post here when I need specific help or advice - or a rant - connected with DS's (mild) mobility disability. Sometimes his leg causes special needs in his (and our) life, mostly it doesn't. But the specifics of worry about decisions, practicalities of splints etc etc always find a group of people here - and have always attracted excellent support from a wide range of parents, too, whether thier children have any form of SN or not.

I would have thought that many of your 'issues' would be well placed on this board.