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SN children

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

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Original poster

What do you say.....

20 replies

eidsvold · 21/10/2004 23:21

Was in the chemist yesterday looking at something when one of the assistants came up and started talking to dd - who put on her usual performance - smiles, waves, funny faces.... the woman then turned to me and asked......

'Does she have a little bit of Down Syndrome??'

I just stared at her for a minute - trying to process what I had just heard.... A LITTLE BIT!!!

I then replied - yes she does have down syndrome....... whilst my mind wondered what 'bit' she had?!?!?!?!

OP posts:

kalex · 21/10/2004 23:28

Eidviod,

How wonderful than someone was so (caring - informed -understanding) I actualy cant fingd the words. To recognizze that your daughter had sn is FAB IMO. I have been on MNET for at least 6 months, and I still find it hard to make posts without causing offence,

Soory

kalex · 21/10/2004 23:32

What I mean to say is that a wrong choice of words, if words can be so imflammatory, " a little bit ds" "a little bit dyslexic" " a little bit" anything. No they are still themselves.

pixel · 21/10/2004 23:39

That sounds familiar!! I've heard my mum on several occasions describe my ds as 'just a little bit autistic'. It didn't bother me the first time but now it makes me grind my teeth. Ds is completely non-verbal with very little in the way of communication skills, still wears nappies and goes to a special school. I often wonder how severe he would have to be for her to admit he is autistic?!

snmum · 22/10/2004 07:32

oh gawd eidsvold, my own mother tells people my daughter has something like cerebral palsy(!! ) I say to her why dont you tell people the truth? It makes me mad because people have no understanding of my daughters special needs because of my mum's 'wooly' descriptions of it. My own family do not even understand that dd goes to special school.

As for the lady in the shop, I suppose she was trying to acknowledge you dd and was being nosey but thought if she said 'a little bit' it would offend you???!!!

Jimjams · 22/10/2004 09:44

ROFL. A little bit!!! You could have said "yeah it's in her foot!" DS1's SALT came out of school fuming because his MTA had asked "err do they have tantrums". His SALT was like "whose they? Use his name not "they".

My mum is pretty realistic now about the level of ds1's needs. Not sure I've ever head the in laws use the A word.

Jimjams · 22/10/2004 09:45

IN fact thinking about it whenever MIL compares ds1 she always talks about her friend's child who has/had verbal dyspraxia who is "just like ds1". And is now "top of the class". Err yeah right- but he has verbal dyspraxia not non-verba autism. I now just tell her to tune into reality FM.

misdee · 22/10/2004 09:49

lol at it being in her foot. thats just brilliant.

maybe she didnt think your dd looked very much like she had DS iykwim. i dont know.

but me and mieow saw a gorgeous little boy in the shops the other day. he grabbed mieow as she went past. he had DS, and was so gorgeous. his mum was trying to get hhim to blow kisses but he thought his coat was mroe interesting than blowing kisses at mieow.

RnB · 22/10/2004 10:12

Message withdrawn

snmum · 22/10/2004 11:26

grr talking of in-laws...just off the phone to MIL, the girl accross the road has a rare syndrome and goes to special school. her mother told MIl that she has started wetting herself again and my MIl said to me 'I dont know why a child her age wets herself' i said its because she has complex special needs, and MIl 'I cant see it!"

See what??!! [anger] she hasnt even realised that the girl accross the road is what my dd is going to be like and people will be bitching about us like that...narrowminded *&&%$#@!

snmum · 22/10/2004 11:27

I can never do the angry face!!!

Original poster

eidsvold · 22/10/2004 11:50

i have had so many different reactions - parents who have children with ds stop and say hi and talk to dd - who usually puts on her performance - smiles, waves, pokes out her tongue, etc. We had one lady ask how old she was etc and then we were discussing if either had heart conditions etc - those things that go with ds. Most other people usually just smile and wave

I guess to me - she is just a cheeky little monkey who loves waving and smiling at people - why not just wave and smile back... I am not going to be having a relationship with this person so why acknowledge the ds at all.,.. just say hi and wave /smile back iykwim. I usually don't bring it up - unless something pointed is said or asked.... I guess I just want her to be treated as you would any toddler who you see out and about.....

I guess that seems harsh.. but that is what I personally would like to see happen....that is probably not much help Rnb....

Jimjams - I did wonder which bit I could tell her had the ds.... I know she was being nice and friendly to dd but it just seemed weird.. maybe the tired hot pregnant lady came out....

OP posts:

Original poster

eidsvold · 22/10/2004 11:53

snmum that is always so hard - interesting to watch the teenagers that I taught in the Uk respond to people with special needs.... a lad we had in a wheelchair - everyone was very supportive inclusive etc ( the kids I am talking about here) however they were less than supportive and tolerant of kids that did not 'look' like they had special needs iykwim.

it seems people are less tolerant of what they can't see iykwim and families I have come to learn are either the best support or the worse for people....

OP posts:

mieow · 22/10/2004 12:30

Someone said to me last week about DD1 "does she a little bit of Cerebral palsy?" I was a bit shocked too

mieow · 22/10/2004 12:33

sorry that should have been a

mrsforgetful · 22/10/2004 13:38

eidsvold.....i just think that 'we'(being people who do not live with DS) have a 'fixed image' of what a 'ds' person 'should' look like......i have mentioned this on another thread to dingle....as i also admit that to me some people with DS may 'look' less 'DS' (if you see what i mean).....but inwardly they may be just as disabled as someone who i would see visually as 'more DS'....and maybe a DS person who 'looks' more severely affected may in fact have easier life skills???

I hope i am not offending you here.

i just feel that there is not enough in the media (t.v particularily) to educated us.....As a parent of ASD boys i feel 'lucky' that over the past few years there have been several good programmes....and R4 having the autism month is great.

i saw that DS programme the other week....but i was deeply upset by that as all i ever seem to hear about DS is the bit where they debate whether the child has a right to life when still in the womb etc.This i now is an important subject.....what i'd like to 'see' is people wit DS 'living their daily life'....as that would help me understand DS better.

as far as the shop assistant goes ..... i hope she simply used the wrong words.

I hate people telling me that 'you'd never know he has AS' etc....because he looks sooooo normal. Equally i hate it when people say ' how do you cope'

ah well....obviously i hate any comments!

Twinkie · 22/10/2004 13:44

Think these people just need educating (should be in school really)and maybe people should rather than just get pissed off gently tell the offending person what is the right way to speak about someone with a disablilty and what the effect on thet child/adults life there is?

Before I came on mumsnet I would have said a downs syndrome child now I know to say a child with downs syndrome (I hope I got that one right at least!!)

Dingle · 22/10/2004 13:48

I know what you are trying to say mrsf. Sometimes I look at dd and I can hardly "notice" any DS characteristics, perhaps that's why she gets soo many second glances, or perhaps that's me being paranoid. Other times, especially when she is tired, she does look more "serverely" affected.IYSWIM.
I have even said before that it took me a long time to see past the DS and see her for what she is, my gorgeous little girl. In the very early days I looked at her and it didn't matter how much I loved her, I still saw DS before I saw the baby- but I think that was the way I had to deal with it personally, you have to do a lot of coming to terms in those early days.

pixel · 22/10/2004 15:41

Dingle, This subject came up at home a while ago
when I saw an article about the possibility of a test to detect autism in the womb. I said then that I would not want to know as I was so glad to have had that special time with ds when he was just 'himself'. I've heard how hard it is for the parents of a child with DS to have to break the news to friends and family, and how their reactions can overshadow the joy of the birth. I imagine it is harder to 'see past' a more obvious disability, especially when you are at your most vulnerable having just given birth.

And children with 'less obvious' disabilities still get stared at, only it's usually because people think they are just horrible little brats!!

Jimjams · 22/10/2004 18:01

trouble is twinkie- harrassed parent just staying on top of coping with all the crap that goes with SN isn't usually the best person to "gently tell the offending person". None of us are saints and we have enough to cope with without having to educate half the population of the UK and Oz.
maybe the education should be in school but then the schools need to f*** listen too (guess whose had her statement reveiw today - will update later- and thanks t everyone for the kind thoughts on the other thread).

marthamoo · 22/10/2004 19:11

Did she ask you if you were a "little bit pregnant" too, eidsvold ?

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