What to do when people stare???

[eslaymum]

My dd2 is 32 months,does not walk(shuffles on knees!!) and does not talk,apart from that she looks like a (hate this word!!) 'normal' 32 month old.We went for school photos today,you know school children with their pre-school siblings.Why do people stare,what do you do,obviously cannot explain dd2 issues with everyone I meet,but hate the sideways glances!!And it's only going to get worse as doc said she might be 4 yrs old before she walks.
How do you deal with it??Have I just got to toughen up a bit!!??Thanks...

[eslaymum]

The hospital paed has said she has reasonable tone in her lower limbs,but extremely hypermobile joints,so the thinking is that the delayed speech is due to her jaw suffering with severe hypermobility too.The paed said many of us could show up as had having a small bleed,if we were MRI'd,they are caused by lack of oxygen to the brain,which could have happened at any time from conception to birth(but dd2's birth & my pregnancy were fine,no probs).

[anonandlikeit]

I usually just glance back & shake my head...

Although i did feel awful the other day, I caught myself staring at a young boy, with the same w/chair as ds2. Not sure why i was looking other than his w/chair was much cleaner, thing is the mum didn't know I ahve a disabled ds at home, she obviously thought I was some sort of nutter.
She was too far away for me to discretely explain without me chasing them like a stalker.

[nappyaddict]

Ah I asked about chromosomal abnormalities cos I know Ehlers-Danlos syndrome and Marfan syndrome cause hypermobility.

Does she have hypotonia because I know that can affect speech.

What do they think the small bleed is due to?

[eslaymum]

Hi nappy addict,MRI was clear except there was a small bleed of 5mm,which the paed said would not contribute to her probs.Yep,had chromosomal bloods,they were clear.She goes for regular hearing tests & they are clear.She is a right puzzle!!!Comm paed seems to think if she has intensive help at special needs school for the next 2 years she shpuld be ready for MS school at 4.Not sure if she has hypermobility syndrome,but she is too young to dx yet.

[wonderif]

THAT ZAZZLE IS GREAT SITE THANKS HAD NEVER heard of them

[wonderif]

oh thanks will have a look is it something i should do or like my husband says it could draw more attention to her.

we were in an airport one year late at night and she was screeching and people staring i got so angry and just shouted all over the place get your cameras out and take a picture !!!

[nappyaddict]

You can get them from cafepress and zazzle as well.

[wonderif]

i have had this same conversation with my dh recently and sometimes its cracks me up

recently mum mum had my autistic child out (5) they were at a craft event and when it was time to go she freaked as she loves art so much.

anyway this woman just tutted at her as she lay on the ground and had her meltdown, my mum who is so protective just turned and said no my granddaughter is not being naughty she has autism !!

and the woman apologised

anyway we are going to euro disney soon and i dont want people staring and pushing so i seen hoodys on ebay saying i love my daughter with autism maybe if i wear this they will back off !!

it mite just save me getting so angry
x

[roundwindow]

Love the smile and wave tip. Deffo going to try that!

Me and dh have perfected a great passive aggressive technique which is to say to DS, very loudly, something along the lines of 'shhhh, that lady over there is getting very upset with you, look at her cross face!'. It's a great way of saying 'what the are you looking at?!' without having to say it to their face always makes me feel better as well.

[nappyaddict]

Oh also has she had a CT scan or hearing test?

[nappyaddict]

eslaymum did the results come back from the MRI yet?

Have they done blood tests for any chromosomal disorders?

[adriennemole]

I haven't had to deal with any stares yet but read this and found it quite amusing

[eslaymum]

Thanks to all who replied,it's good to hear how you all cope!!On another note,finished the mountainous task that is DLA yesterday with a little help from HV.Wow,has it made me feel depressed.I now need to wear a sign round my neck,saying 'I have a disabled child!!'thats what it feels like anyway.How did you pick yourself up after 'The dreaded DLA experience??'

[cloelia]

My dd is 11 and a Dr Who addict. Last year DH took her to the exhibition at Earls Court as a treat. As they were coming out a little girl shouted that there (my dd) was the monster character (don't know his name) who had been in a sort of wheelchair, breathing bubble type thing in the last series. My dd actually thought it was extremely funny and used it as an anecdote when she next saw the neuro consultant who at the time was videoing her: unbelievably it made him cry. With emotion not humour. I have to say now, my reaction is to say to dd when she notices people staring, why don't you go over and say hello to him or her, perhaps he knows you? Mind you, I did have to ask a child to go away and stop staring as i performed an emergency tracheostomy change outside Next the other day... hey ho.

[mysonben]

We haven't had nasty comments yet but as DS is only 4 (mild asd) people just assume his is having a toddler tantrum, had a bit of staring when DS has had mini-meltdown in supermarket and once when he completely flipped his lid in superdrug because the shop-assistant had half closed the door curtain to stop anymore shoppers coming in... i was trying to calm him down but DS was in tears, jumping up and down and screetching 'doorrrr!!!"
Shop assistant was staring with questioning look on her face as was the woman waiting to pay behind me, so i just said 'ds has some special needs and gets distressed quickly'.
They both half smiled and that was that.

As time goes on if and when needs be that i say something i might try the big grin and maybe the wave is i'm really p*off.

[Jo5677]

I once told a woman 'my daughter would really like it if you smiled at her rather than just stared,she's very sociable' and smiled at her.
I was having an of day,i'd not normally say anything,the woman just rushed of embarrased though rather than smiling ...oh well

[boolifooli]

Nappyaddict - she just sets up a sort of assault course for him involving steps fences, hills and so on. Thankfully he loves it. Can you give me a brief description of what they do with DS in hydro?

[nappyaddict]

He has physio and hydro. The hydro has helped him more than the physio because at this age they can't really do proper exercises. What stuff does your DS do at physio? See if you can get DS a course of hydro it's fab.

[boolifooli]

Sorry for the hijack people!

Nappyaddict - Yes, I am grateful for the recovery he has made so far. To begin with I couldn't even see that he would be able to ever stand unaided again so even the point that he has got to now is good enough. Anything else is a bonus. Is DS getting any physio? DS is having a short course of physio and has Peidro's which am not sure if they make any diffs but they certainly don't make it any worse.

[nappyaddict]

DS is still recovering now but the good news is that when they have it so young (DS was 2.7) the brain can learn to rewire itself and just ignore the injured bit so that's what we hope for every day.

He had issues before he was poorly anyway with slow development and suspected ASD so I think and the psychologist agrees that the encephalitis just exacerbated what was already wrong IYSWIM.

[chopstheduck]

the way ds has been lately, he is likely to shout at anyone who stares at him.

I generally jsut glare at people.

I do love the idea of the smile and wave, but don't think I could quite manage it!

[boolifooli]

Nappyaddict - He didn't walk at all for 3.5 months. Then he spent a few months doing a bit here and there before he was routinely walking all the time. He can walk long distances now, so long as he can't see the distance ahead of him if you see what I mean! He doesn't want to walk all the way down the street but will cover miles walking about at the park/zoo/town etc. How long was your ds's recovery? I've heard of a few other cases from talking to others on the net and even in RL and some people are up and about in no time and some take many many months.

[nappyaddict]

Ah DS had that caused by Encephalitis. How many months did it take him to walk again?

[boolifooli]

Cerebellitis, inflammation of the Cerebellum. That's the most likely diagnosis anyway.

[debs40]

With the meltdown thing, I try being absolutely, terrificly, obviously, and loudly kind to DS. The exact opposite of what people expect when a nearly seven year old is screaming because he can't wait.

I find people just look away then. it's as if it is so unusual to respond like this, that they know something must be 'wrong'.