anyone else's disabled child want nothing to do with others with disabilities

(20 Posts)
Notonaschoolnight Wed 23-Mar-16 21:44:23

My dd12 has Down's and is in mainstream y8 and has to choose options as the school is doing the new curriculum GCSE work over 3 years rather than two as its more difficult.

There are compulsory GCSEs for her to take English Maths Science and RE she doesn't have to take a language due to her level of ability (on the current system she might get E/F's for all subjects, but on the new, more difficult curriculum, I dread to think) she is also meant to choose between geography or history, then choose 2 additional subjects

At the end of a discussion we thought that taking 7 GCSEs may not be the way to go and instead do the 4 compulsory ones plus one option, Textiles and also do level 1 Princes Trust. This would mean only studying 6 subjects leaving her some extra time to concentrate on these 6, as she wouldn't do history or geography

My dd was there when Prince Trust was discussed but as soon as we left started to cry she doesn't want to do Princes Trust she wants to choose options like everyone else, doesn't want to be different doesn't want to do a subject with others with difficulties (has always been reluctant to mix with people with disabilities)

I'm trying to cheerlead Princes Trust but the truth is I don't know what the right thing is to do, I can only guess and is my guess worth getting her so upset? I don't know

What do you think?

Akire Wed 23-Mar-16 21:49:37

Is it because she will be away from friends? Can see how that would be upsetting. Maybe when she has done things as part of a larger "special needs" group there is some teasing in school?

Also depending on disabilities of other children and if she is more "able" she may just want to do things that are more interesting and grown up.

Having said that I'm guessing as GScE kick in she may find it harder to keep up and may be quite glad have chance to drop one or two once she starts. Would school allow you to try see how she manages first?

Notonaschoolnight Wed 23-Mar-16 21:58:35

She hasn't got any actual friends, girls in her year group tolerate her eating at the same table as them but the rest of break time she's on her own, the only talking she does with peers is in class

I hear you though, even though this is the case it's still important to her to appear to be the same, so could it be possible to start a couple more GCSEs in year 9 but stop them in year 10, I'll ask

elliejjtiny Wed 23-Mar-16 22:12:05

No advice really as my dc are a lot younger but my ds2 is desperate to be like the other children in his class and not use his wheelchair when he needs it, even though he will be in pain later (He has Ehlers danlos syndrome).

Akire Wed 23-Mar-16 22:20:41

So sad that she dosnt hVe any friends. Are there any smaller more mixed groups or activities she may like outside school? If she's never really mixed with lots of people can see how this would be off putting. Guess I'm thinking more long term post -16 qualifications you may be more restricted into funding and college places available so perhaps princes trust could help her feel more prepared. Well you know what I mean.

Notonaschoolnight Wed 23-Mar-16 22:22:00

Oh bless him in the past I've been a TA working with a child using a wheelchair and having to miss out on some activities so I can understand how hard it must be for you as his mum

lougle Wed 23-Mar-16 22:22:57

It's so individual. DD1 has always gone to special school but is in the most able cohort cognitively and physically (although pegs middle of that cohort). I don't think she really sees disabilities. I mean, she knows that 'Flora' uses nappies, 'James' uses a kaye-walker, 'Rachel' blows raspberries instead of talking, 'Grace' uses eye gaze technology to communicate, 'Steve' has a PECS ring binder, 'Peter' wears ear defenders and she needs to keep out of 'Tom's' way when he's angry....but their just her mates.

If 'James' is in her way with his Kaye walker, she would say 'can you move please?' She doesn't give him automatic right of way. Just the same as the child who uses a wheelchair queues like all the others.

So it's a bit long winded, but I suppose exposure has normalised disability to her. She knows she has a brain which didn't grow quite correctly in the womb and that makes her wobbly, inattentive, with global learning difficulties, but she is quite certain she's awesome!

Does your DD spend any time with other chosen who have extra needs?

Notonaschoolnight Wed 23-Mar-16 22:36:32

She's always been in mainstream so I've gone out of my way to take her to Down's social activities but since the age of 10 she doesn't want to know and she's very stubborn about that sadly

Notonaschoolnight Wed 23-Mar-16 23:04:17

Unfortunately I've reached a point were I feel like no school would work for her, special school would have benefited her socially but not academically, whereas her current mainstream is doing the opposite. I've mentioned special needs youth clubs and that idea went down like a lead balloon.

I can't force people to be her friend equally I can't force her to be friends with people she doesn't want to be friends with, all whilst trying to keep the smile plastered on when really I want to climb into a cupboard and feel sorry for myself and have a good cry.

God we've got a life time of this I was thinking the other day of the "welcome to Holland" poem we all get landed with and how we grieve for what we haven't got etc etc. It made sense to me at the time but I didn't appreciate is that that grieving doesn't all happen when you find out you're child is disabled as how can you grieve for all things way in the future, for me i think it's something that will happen at every life stage

That that's enough of me moaning time to get the butlins redcoat and smile back on winkI shall definitely ask about giving more GCSEs a go initially though, thank you all x

Akire Wed 23-Mar-16 23:29:10

You sound like you are doing everything you can red coat too! You are right about the new grieving though for both of you. Good luck

TalkinPeace Thu 24-Mar-16 21:40:15

Slightly sideways
but one of DDs oldest friends has become progressively physically disabled as time has gone by, involving shit loads of hospital appointments (which have whacked exam results) and now full on electric wheelchairs
the girl has very few friends
because she is odd
no judgement on either side - kids choose their friends, they choose the easy ones
BUT
hang on in there
my fave member of staff at my local waitrose is the Downs lad - as he never gets pissed off. I am not alone.

GasLightShining Fri 25-Mar-16 23:41:14

What do the school think?

DorothyL Sat 26-Mar-16 06:25:46

Could I, with the greatest respect, point out that it's preferable to say "the lad who has Down's syndrome"?

Message withdrawn at poster's request.

Message withdrawn at poster's request.

Jims Sat 26-Mar-16 06:59:40

Not education related but there are charities such as Friends for Leisure in Cheshire who recognise those difficulties. Might there be something like thatvin your area?

Flossiesmummy Sat 26-Mar-16 07:00:50

I know my brother (has DS also) doesn't like to mix with people when they have only one thing in common: having additional needs.

I guess it's kinda like me being grouped with people who have brown hair rather than people I enjoy the company of.

Sorry I couldn't be of more help, but thought I'd add what I can.

ChalkHearts Sat 26-Mar-16 07:07:49

I don't have a child with DS, so I could be totally wrong. But these are my thoughts:

I think it's fine for her to have no friends. As it sounds like she doesn't want them or miss them. (If she did she'd presumably be more interested in SN groups / DS groups etc)

I also think it's fine for her to do 10 GCSEs at G level rather than 6 at an E level - it that's what she wants.

She can always drop some any time between now and exams. Equally she can always retake some later.

The main thing you need to be figuring out are the skills she needs to live independently / get a job. And I don't think GCSEs are going to be the path to either of those things.

Notonaschoolnight Sat 26-Mar-16 07:17:35

Morning

I spoke to Down's Syndrome Assoc last summer about the situation and they sent this

http://www.down-syndrome.org/practice/2012/

It's basically saying that my situation is quite common and how being involved in the community and mixing with people of all ages with similar interests helps develop friendship. I can see that and when dd is a bit older it's something ill instigate

For now though she says friends aren't important and her school works more important (bless her she's every teachers dream in terms of her attitude)

Also obv schools closed but I did send a second email asking if she could do 8 GCSEs in year 9 then look at changing year 10, explaining that it's not right that ,even though I know what's best , that I dictate it as dd needs to see for herself that it's too much

ChalkHearts Sat 26-Mar-16 10:17:02

Well done.

You're listening to your DD and respecting her wishes. That's massively important.

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