To want to know the Something Special disabilities?

[EmmaCate]

I am interested from a science POV about what makes some children on the show the way they are, but it feels a bit voyeuristic sometimes. Especially because it's often the very disabled children that make me wonder what condition they have and why it manifests that way.

I also wonder whether the shows could help people who have just found out their DC has one of the conditions featured. Without knowing what disabilities are featured in each episode though, it wouldn't be much of a reference point.

Would be interested in views of parents with children that have a disability. I heard on Radio 5 a Mum say she liked people asking about her kids because then they understood them better, but this is always a sensitive area to have any opinion on and I don't know therefore if IABU.

*Pag: it is great. Especially when my doesn't-talk-yet-two-year-old did the sign for vet in response to Justin on the tv!

Are you saying he/she gave Justin a big old v sign

This is an interesting thread and it is quite thought provoking for me.

One of the thoughts I have had is about my reaction to finding out what one of my friends disabilities is. I had known this guy for about two years and whenever we saw each other we had a good time. I never really thought about his disability until I knew what it was. Until then, I saw that he was person who had short legs, sometimes used a wheelchair, and had a big scar on his back, but those things were non issues in terms of the friendship I had with him. When we were out one day in a big group, there was someone who was collecting money for a spina bifida charity, and that was when I found out what his condition actually was.

I am slightly ashamed of my reaction to finding out, because later that week I found myself reading about it on the Internet, and then feeling awful for him because of the things he was likely to have been through as a child and because of the things I then knew that he still had to go through. In short, I felt sorry for him, and it made me think differently. Not in a particularly bad way, but in that i had found stuff out and was relating it to him, when he had never told me himself. I don't think I should have felt like that because he wouldn't like me feeling like that about him, and nor would he want me to admire the way he dealt with it or feel anything about it really.

We had an alcohol induced chat about it a while later and he completely understood how I felt and he was lovely, as he always is, but why should he have to deal with my reaction to a 'label'? Why did I find myself feeling that way when I had never even thought about it before? I don't know.

I am ranting a little and it's quite nice to say how I felt about this because I never really have before, but in conclusion, I don't think it does any good to know what label a condition has if you have no need to know. In my experience anyway. It's just not necessary.

Something Special is very possibly one of the best children's tv shows there is.

the amount of work it has done towards 'normalising' disability is astounding.

as other posters have said, young children watch it without even noticing the disability (and there are NT children featured too) - just a lot of children having a great time with Justin and Mr Tumble.

and the work it has done with making signing and makaton more mainstream too.

the more programmes which are shown with this type of premis the better, imo.

dd2 asked at Christmas why Cerrie on Cbeebies only has one hand. she is nearly 5. she had not noticed before then - she only noticed then becuase (in her opinion) it would have been easier for Cerrie to do whatever she was doing with 2 hands. and then she wondered why, etc etc. she has been watching Cerrie on Cbeebies for at least 3 years. an aboslutely prime example of seeing the person first, and the disability (a long way) second.

she watches Somethign Special, and occasionally might remark 'oh, look, X is a bit like dd1, isn't he/she?'. and she might ask whether other children shown will have similar difficulties to dd1, or different ones, and we talk about why they might (or might not, and what other difficulties they might have) and so on.

How Very Dare You?

He does not know that sign!

when I was at university, a group of us that had been friends at school used to visit each other at our respective universities - a weekend at each, the hwole gang together etc. was marvellous.

so anyway, they all came up to visit, and a good time was had by all. and then one evening we were all in the bar, and I noticed one of my (uni) friends was a bit upset. (we were all a bit emotional due to be err, a bit plastered, tbh).

I talked to her, and it turned out she was worried she had upset one of my school friends (who, as it happens is deaf), because she hadn't realised she was deaf, and had not been facing her when she was talking to her, and thought she might have embarrassed my friend who had had to ask her to repeat, etc (friend was absolutely ok about it, btw). she asked my why I hadn't told her that my friend was deaf, and was horrified when my answer was ' sorry, I forgot'.

in my defence, I really had. we had been at school for a long time together, and it was 'one of those things'.

we all ended up having a long talk about it, and I defended my position then by saying it just wasn't the thing I thought of when I thought about her - it stil isn't. it is such a small part of who she is.

I long for a wrold where disability is always seen that way - it is important (sometimes) to know a label. there amy be practical considerations, and I woudl have avoided a bit of upset if I had remembered to tell my friends somethign they needed to know in order for the evenign to run smoothly.

but at the same time, it took nearly 2 days for anyone to notice that there was osmethign they needed to notice, so to have labelled her from the start would also have been wrong.

I want a world where people do not attach importance to the labels, where my dd can be known as 'dd1. the girls who is XYZ, oh and also (in case you need to know for some situations) also has ABC' but where she is not defined by, or restricted by ABC. and I think that can only come about if disability as a whole is more visible, if people do ask questions - of me, of her, and of themselves, and if diversity is truly accepted.

manic i see you may think that children with disabilities and medical problems special needs , have things they can not do but there is many more things they can do and enjoy the same way as all children can , I dont think children should be sheltered away from joining in fun things because there may be some aspect they cant manage , I think this sort of programme helps ALL children understand differences not discourage it ,

iusetomuchkitchenroll SB is the disability i have and Its ok IMO to feel some sort of empathy even sympathy and caring about somebody after you have read the symptoms , It isnt a walk or wheel in the park depending on your mode of transport but with a lot of medical conditions symptoms vary , and with most people the treatment and operations symptoms are just part of who we are not who we are ,

manic..well what should they be doing on the show? "SN" type things?

Thank you mrsjay.

Lots of children with severe and profound disabilities (and even more minor ones) don't have a cause for their disabilities either. My child is severely learning disabled, has physical disabilities, chronic epilepsy etc and genetically she is completely normal, her brain scan is normal and everything should be normal, but it isn't! We are not alone

its awrite iuse its ok to care and worry about your friends ,

oh silverfrog, your dd2 sounds like my two NT children. They have SN radars I am sure :) I love Something Special too, we all do. My daughter (the one with sld) loves Justin in all forms though, gigglebiz, justins house etc. I think he is a marvel

I'm all for chatting in a general way about my DS's disability, I think it's fine when people want to know more about a condition and what it means for that person/how it affects their life.

What I cannot stand is people outright nosiness and voyeurism. My DS often uses a large special needs buggy, one day we got on the bus with him in it and a woman sat nearby piped up loudly "aw bless, what's wrong with him love?" Well for a start he's not deaf, and there's nothing wrong with him! His condition is no one's business but his and his doctors! I was absolutely gobsmacked that this stranger thought this loudly insensitive and patronising question was a wise move!

Something Special is a fabulous show in terms of showing NT children and children with disabilities together enjoying their lives. My ds loves it and I'm hoping ur generation of dcs who watch it will grow up seeing people first, individuals, not disabilities or labels.

I think that possibly many people are curious about these children and what disabilities they have, but it doesn't mean that anyone has a right to ask or know.

I love Something Special. DS has been watching it since it first started. His little bros watch it now and copy the signing.

I am always interested into what conditions children have because its part of my job. But lots of the children I work with dont have a named condition so it is also irrelevant.

The OP is certainly not alone in wanting to know what disabilities the kids have. Hands up who gets asked regularly (from the slightly apolgetic to the sodding rude) 'so whats s/he got then?'

Happens all the time with DS. Not because he has an obvious disability but because he looks 'normal' yet attends special school and SN activities.

Parents of kids with SN ask each other quite a bit too.

But in the case of Something Special the point of the programme is not to educate non disabled people. Its a children's entertainment show. If you learn from it - great - but that isnt what its for.

Thanks. I have lots of friends with various disabilities and I think much less about these things now, I don't even know what some of the disabilities are. I think this one just bothered me because it was the first time I had experienced anything like it, and this friend is a very strong 'mans man' who just wouldn't like to think that people felt sorry for him (especially female friends that he enjoyed some mutual flirting with)

What Mrs De Vere said, it's a really nice show which allows children with disabilities to be on TV and to have someone communicate with them in a way they understand and about things they enjoy, not a science documentary.

My son (NT) has a classmate with a number of physical disabilities. I don't know what the root cause is, neither does he. He once asked "Why does [classmate] have trouble with sitting cross-legged?" and the answer was, "Because the way her legs and joints are made make it hard for her to cross her legs."

I can't think that me being able to say, "because she has this condition called xxxx" would have enhanced the explanation one bit.

Why make it sound more significant than it is? Knowing the cause is important for the disabled person and for their family, so they know what else to expect and how to manage it. But if someone's coming to my house and they're (for example a wheelchair user, I don't need to know why they need a wheelchair in order to make them welcome, do I?

No-one has asked me for years what my daughter has. I think they might be frightened of her though as now she is big and challenging and swears like a trooper, she isn't cute or socially acceptable

Actually, something in the programme information on the website (think CBeebies has a "parents" section) might be a good idea. Obviously not identifying conditions of individual children but it could just give some links to other sites on e.g. autism, CP or whatever (see? I have no clue). They have a link to "What is makaton" already.

Just because Something Special might be a logical place to find further information if a young child was watching it and asking questions and you had no idea where to start looking.

Well I can see both sides I guess.

I don't think Something Special is the right forum for this, but a series of about me programmes aimed at younger kids (I know there have been things for older ones) where 'I am Sam and I have AS' is included amongst 'I am Sara and I am jewish' or 'I am Sidney and I live with my Grandparents'.

Soemthing that is on every week so they can cover laods and loads of stuff.

According to my Paed, 60% of kids in my borough never get a dx. I suspect that in fact they are the ones whose aprents struggle, it's not ahrd after all to google 'what is Angelmanns' (etc)- having plenty of contact with the SN world through my kids, I do it a lot.

I actually don't have a problem with you wanting to know more OP. I have 2 DS's that both have sn but not physical. To look at them when they are watching TV or something similar. I can understand why some people would prefer that people didn't ask but I am the opposite. I would much rather people asked about my boys rather than start or whisper, which is what we mostly get. DS3 has significant Autism and learning difficulties with severe speech delay, he is 5 and can have quite bad behavioural problems. Because of his issues around being out in public we use an sn buggy, still has a dummy and is still in nappies. It is amazing how many times I have heard people walk past me and gossip about how disgusting it is to have a child of his age in a pram, sucking on a dummy and how I am a terrible mother. Only once in 3 years has anyone actually said 'oh, he's a bit big to be in that isn't he' so I explained and the woman was great, even said she wouldn't automatically judge because it just hadn't occurred to her. Don't think it helps that DS3 is, although being 5, he is very big and I mean big, he wears age 10-11/12-13 clothes.
Don't get too much in regards to DS2 as he just comes across as full of energy and a bit quirky!
As others have said the internet is full of information on lots of disabilities. Cerebra is a good on as it covers all neurological disabilities.

TBH I would quite like to know why DS is the way he is. He had some DX but they are the sort that don't really explain why.
He has LDs
ASD and Auditory Processing Disorder.

Or does he?

Does he have genetic condition, a broken arm of some chromosome somewhere?

All of the above DXs are often part of a syndrome/conditon etc. Knowing will not change him but I cant help but wonder.

I would like for him to have a proper screen but understandably most LAs will only do the basic Fragile x/Downs etc.

Cant you ask his paed to refer him for some more tests?

I know when my daughter went for assessment they did ct scan of brain, eeg (or is it ecg? ), chromosme analysis, further mri of brain, specific genetic tests and fish test etc. I don't think it;s unreasonable to ask. As i said though, all my daughters tests were clear/normal