Another supermarket gem....

[eidsvold]

I seem to get them all the time - people saying stupid things to me.

Last week had to take 2 dd's grocery shopping - usually go by myself. It was a nightmare... dd1 was really playing up - mainly cause she was tired and partly as we have terrible twos every now and then.

I have old women glaring at me cause dd1 is screaming and dd2 decides to cry with her for good measure.

I get to the checkout ( harassed and totally fed up) and the checkout chick ( old woman) asks me 'Do you know what her learning capabilities will be?' in reference to dd1. I wanted to tell her to mind her own bloody business and hurry up and put my shopping through before I totally lose it. I just shook my head not daring to open my mouth...

What do you say to a question like that?!?!?

Hi SleepyJess. The Williams Syndrome is completely seperate from her cp. It is random genetic disorder that causes/can cause a range of developmental and/or health problems. There is a thread from about two weeks ago that someone (I think it was Merlot) kindly started for me after I had posted about WS in a different thread. That will give you more information about it.
Dd's cp was caused (or allegedly caused!) by medical negligence during her birth. On the cp side of things she got away quite 'lightly' if that is the right expression to use, as we knew from very early on that she would be affected in some way it was just a case of waiting to see to what degree. It is her right side that is affected although her arm and hand are now pretty good, (still 'clumsy' and a bit 'lazy' but all things considered fairly remarkable fine motor skills with her right hand). Her balance in standing is almost non existent, although it is coming, just as it did, with sitting, kneeling etc and she is walking really well with a rollator.
It hasn't been 'officially' discussed yet but I am presuming she will need a wheelchair for getting in and out of school and her rollator for inside the building, but that is a apretty scary thought. Did your ds use a wheelchair before he went to school? How did you cope with that?
Your ds sounds like a real little ladies man! Seems like you've got a lot to be proud of!

Just read that post back - hope my choice of words hasn't caused anyone any offence. It's sometimes hard to know how to describe things when you're not talking face to face.

You know MandM, the more I think about that other mother the more I find the behaviour so awful... really shocking. It was one thing not to admonish her child for her comment but if she actually encouraged her dd to say what she did she is not fit to call herself a mother. You can be damn sure she won't like the look of anyone different to herself once her mother has finished educating her, not just your dd. Her mother is condemning her to a life where she will constantly be in trouble for her comments as schools will NOT accept this behaviour. This makes be both and so . Just give your dd a hug and remember was joy she brings you.

Hi MandM. What comments which could have caused offence? I can't see any!

DS had a Maclaren Major buggy until November last year so started school with the buggy. But although he was still well within the weight for the buggy (I have seen much older children using them and DS in 'only' 3 stone - which feels bl*dy heavy when carrying him, lol!) ..he is so.. it's hard to describe.. active.. and can't/won't keep still.. grabs things and people.. that he would quite often tip the buggy over and be laying flat on his back etc! He used to find it v.funny.. but you should have seen the faces of people in Tesco who once looked at me as though I was deliberately thowing my disabled child around the place! (I could go on forever about my supermarket experiences.. like the time when DS pulled down an enormous display of Charmin loo rolls which cascasded all over me and him.. and all over the floor.. and people just GLARED! And nobody helped me pick them up! I think this depends on the people who happen to be nearby when things like this happen though.. because I've often had people help me out at times like this - there have been MANY.. .. as well.)

I did have issues about the wheelchair for a while.. but it is small and neat and called a Blade 2 .. my other kids think its cool! lol. DS loves it.. he shouts 'Wheelchair! Wheelchair!! (which sounds like Wee-chair! ) when we put him into his seat on the school bus and the driver loads the chair into the back! The first day we picked it up, I put aside my issues (forcibly!) and went straight to Woolies and bought Nemo stickers and gold letters and we all decorated the wheelchair that night.. and put his name down it!

I do have a few problems in that I am a bit too tall for it so I stoop when I push it (look like an old woman when I catch sight of myself in windows ) and it's not great to steer because of the narrow handle bar thingy.. (that's a technical term! )... but on the whole, it's better than the buggy because DS is more stable in it.. and more comfortable I think becuase he's not slumped back slightly like in the buggy. And school are happy from a health and safty point of view.

And for DH, it really is only and A to B thing.. he is very mobile otherwise..can't walk or stand unaided.. but likes to cruise round furnitire and crawl..and walk with aid. He has a walker at school but our house is too small for one unfortunately.

I do know how you feel about the wheelchair.. but you will get your head around it if you have to.. and it's really not that big a deal.. it just feels like it for a while. I just put the 'child in wheelchair' stigma thing out of my head.. and enjoy the benefits of cars stopping to let us across the road etc.. which we never got before we had the wheelchair!

I will look up the thread on Williams Syndrome... thanks.

SJ x I

Thanks Sleepyjess

That post was really reassuring. I know the whole 'wheelchair thing' is something we will just have to face and deal with, it just seems a bit 'final' if you know what I mean. It was really nice to hear some of the ways in which yuou and your family have dealt with it. that is one of the great thing that I have found about MN, even in the short tme I've been posting, you can ask questions on topics that would perhaps be too sensitive to raise with people face to face, and there is always a kind and helpful 'expert' around to give answers.
Thank you again and I look forward to 'talking' to you on other threads soon.

MandM I agree. MN is great for this. (Btw I meant DS in last paragraph.. not DH lol!)

I looked at the Williams Syndrome website and don't think DS could have this. I know this is no real reason to think he should have.. but he is basically 'undiagnosed' so I tend to check out all syndromes I hear of .. although less than I used to. He does have some of the features.. but he his speech is very delayed.. not advanced.. and I think he is much more physically disabled than is described. I also think he has had the FISH test. Can't believe I can't remember off the top of my head! Shows how chilled I have become about it lately!

Glad you feel a little reassured. Chill until the you have to the do 'chair thing'.. and when you do.. take DD to Woolies and let her choose some Barbie stickers.. or whatever is her thing!

Strangely enough, I don't think of it as final.. (although I totally know what you mean) because for the first time ever. physios are starting to talk about DS in terms on when he walks. I actually gave up asking the 'will he ever walk?' question a long time ago because a.they can't/won't answer it and b. I realised a long while ago that DH and I know far more about DS than any of them ever have. And then it gradually became obvious to me that DS would walk.. in some fashion.. probably nothing like 'normally', ever.. but who cares And now the professionals have starting saying this too. It's clearly his mission to walk.. and I had learnt to deal with the fact that he might never and learnt not to mind.. (there are SO many other goals! ) and now it appears he will.. so the wheelchair is just something he needs right now. Or maybe he always will to some extent.. and if he does then so be it.

Lots of love to you and DD

SJ x

It never fails to amaze me how ignorant and rude people can be. The DS of a close friend has CP and whenever we've been out together, whether it's on holiday or wherever, I can't believe how many people stare. And why is it the adults are often the worst culprits? Surely they should know better?
Friend's DS is one of the most captivating and beautiful children I know and it breaks my heart that people don't have even have the decency to smile at him. His parents have such dignity and ignore the strange looks they get whereas I'm always ready to offer a few choice words back at the ignoramouses.
I feel that my (NT) DS is totally blessed to have a friend like this and will help him to grow into a more accepting, understanding and compassionate human being who won't stare at people in the street because they might be different.
I'm convinced that they must release some sort of gas through the air conditioning in shops and shopping centres that brainwashes some people into believing that other parents really want their advice or opinion!

LOL Bexi.. well that would explain it!

DS has a lovely friend as well.. she is 4 months older and wonderful with DS. She is my best friend's daughter and I have so many pictures of them with their arms round each other. She used to say DS was 'special' but now say 'disabled' and explains what that means (but only comments if peole ask!) Both of them started school last Sept (not the same school) and she has a disabled child in her class who she is wonderful with and who adores her. A friend without any additional needs is a wonderful addition to a SN childs life (as well as other SN children obviously.)

SJ x

i best one liner to someone staring in a supermarket is,

"do i know you ?"
"no"
"lets keep it that way"
my 3 have autism two of them twin girls go to a special needs school, if we are out and they see a child with downs or in a wheelchair, they stare i tell them if they look at someone they can smile/wave/say hello but they do stare and i find that difficult as i worry how the other child feels and the parents cos to the unknowing eye my girls look just like any other kid.

Like it....Like it a lot....and I WILL use it.

Love it, OJ!

c'mon everyone any other one liners we could use?

what about - are you the smacking/supermarket/food/whatever police?!?!

A closed mind is a good thing to lose.