Here are some suggested organisations that offer expert advice on SN.
Stupid things people say(28 Posts)
Probably done this one but I need to horrified laughing.
My gem is someone holding a 2 yo who was tugging at her hair and looking at DD (quadraplegic cerebral palsy with no movement) and saying 'you're so lucky she doesn't do this'
Thats me. Lucky.
omg that is horrendous. how did you not slap her.
Noooooo! Have to join you in laughing at that one! Was she mortified or didn't she realise??
Mine was when DD3 was 4 weeks old, and I was at a party with my elder DD. Another mum commented that DD3 looked sleepy, and I felt at that stage I had to tell EVERYONE she had Downs syndrome. Other mum says "Oh, she'll be a mongel then?" Me (to my great shame) "..err.....well...yes...but " She'd gone by then, and these days I'm full of smart answers. I was newly postnatal, thats my excuse. I don't know WHAT her excuse was....
it does sound horrendous but this might put it into context
when I was last at the Bobath Centre with dd1 (quadraplegic spastic cp, but mobile with aids) dd2 was running around all over the place, I couldn't keep up with her
I said to some of the other parents there 'I'm not used to this, it was never as hard as this the first time round'
they laughed and they understood - I think there is another way to see this comment and this is from a point of one parent treating another parent like, well, just another hassled parent. I'd rather have people making jokes to me in that way than feeling awkward around me
am I completely off message here?
No, I get you - sometimes you have to see some sort of humour in it all - after all what you were saying is true! And you do have to laugh at the incredibly insensitive remarks of others, or you'd go crazy.
On explaining that ds1 has delayed speech - "Oh, he's a bit backward then?"
HR WAS STANDING RIGHT THERE, HE BLOODY HEARD HER, AND HE'S NEARLY 4, AND UNDERSTANDS EVERY BLOODY WORD.
Silly bitch. 'Backward', ffs. She was only about 30. grrr ggrrrrr
And, a classic from my dad
"Do you talk to him?"
No dad, I hadn't thought of speaking to a child with a speech delay, what a novel ploy! I lock him in a cupboard and only bring him out for family photos. Might expain why he also, as you put it "always looks ill, that child"
I try and keep the humour going. The banter at our CP support group would make the PC brigade just cringe and I wont tell you DD's nickname cos when I did it on a normal-people list I got removed!
But I do see the funny side in thoughtless comments. We had one about how I was lucky I didn't need to potty-train DD. Its like half humour and half shock at the ignorance.
I do scare her paediatrician though. I tend to amble in and ask him why she isn't juggling yet. Poor man. Then I asked him what he was going to do about her main affliction. He started talking about how CP wasn't curable etc so I said 'no, not that. Not worried about that. Its her ginger-vitis. What can we do about that hair and freckles. Everyone will see!'
Oh, we've had to explain that DD is bright. Then we get 'but how can she be bright if she doesn't walk?'
Bring him out for photos Colditz? Tsk, the shame. I tell everyone the cellar is for DD. She is our family secret and we just shove food through a slot. One women actually got as far as 'but if she can't move how does she get the food....' before she cottoned on!
I have a friend with a daughter with DS - her gran told her "she'll grow out of it!"
I get you Capacino. Friend of mine has a boy with hemiplegic CP so he can shuffle around and use one arm. Whenever he is pulling something over I just say 'C never does that, she is a good girl.'
The humour helps with the pain. C has no movement at all. I know many quads can move but C can't move any limbs at all. Or sit or roll.
Always means she stays put though. can't say that about many 3 yo's....
My mum reckoned C would grow out of her CP or told be off for being too negative when I said 'mum, she's totally quadraplegic and blind, it ain't gonna happen.'
'You;re so negative dear. I know someone who had something that got better.'
A cold maybe!
I had a lovely woman (not) stare at ds when he was trantrumming (is it a word?!) in a shop. When I said that he was autistic she said 'What did you do wrong then? The MMR?'
I would've lamped her one if I didn't have my hands full at the ime.
bobalinga you have just had me crying with laughter. thank you.
I think black humour is what keeps us all sane.
Its what keeps me going 2shoes but many people get offended. usually people without a sn child I've found. They try and be ultra-PC etc and can't cope when I let rip.
Hopefully I'll never upset someone with a sn child as thats never my intention but I've always tried to find the humour in something. We've had some bleak years with DD, with her epilepsy and times when I thought I couldn't take one more blow. I have MS too and use a wheelchair so I've found if I shout 'make way for the cripple' people are too horrified when they see its 'the cripple' being un-PC they don't know what to say ;-)
And heck, if they did say something I'd just dribble on them and tug at their clothes till they went away.
But quadraplegia is a bugger. No way can I shop lift and blame it on the wheelchaired one! Mind you, given that everyone tries not to look at her (it might be catching....) I could probably stuff her chair with half the contents of IKEA and saunter out. Us cripples are invisible (has a benefit in that when I'm in me chair, no-one ever approaches me for money, no charity etc. I do appraoch them sometimes and hold out a hand....)
do you get the moses thing. I love that when I just put my head down and keep pushing the wheelchair. people just move
also find the caps seat handy in getting the foreign students out of the way.
when pregnant with dd2 - i attended an antenatal appt with an obstetric registrar who asked me ( after reading my history) How did I know my dd1 had down syndrome!!
I was gobsmacked - in that dd1 was in the room - we had just been for an ultrasound where I sonographer commented on dd1 having down syndrome ( in a positive manner) BUT an obstetric registrar could not see it.
I sat in the seat like a mute and just pointed at dd1!!! When I finally recovered I said well we knew before she was born and the diagnosis was confirmed via blood karotyping.
Head girl - I had a woman telling me how 30 odd years ago they had been offered a 'mongol' to adopt. I was again speechless - probably only the 2nd time in my life..... but then realised she was a very old lady and 30 years ago they would have referred to children like dd1 as mongols.
Eidsvoid, you're right, it used to be the accepted terminology. Its a horrible word, the woman who said it to me was my age though.
I recently went to see a GP cos Issy had a sinus infection (she's prone to them, cos of her flatter nasal passages) He too asked me when did I find out she had Downs. She was 5 at the time, and I couldn't see the relevance of this question. And I was sooooo tempted to say "Downs Syndrome?? Waddya mean? Do YOU think she has Downs??"
Just to see his reaction you know ....
My MIL has spent 35 years caring for her profoundly disabled daughter - and is capable of chatting about her friend's daughter 'the mongol'. It is a horrible sounding word.
ohhh headgirl that question makes my blood boil - cause in my learned (ha ha) opinion they ask for two reasons:
1. you knew before hand and so are some martyr or right to life nutter and went on to have your child - so be treated with kid gloves.
2. you found out after the birth and poor you have had to 'put up' with this child and their sn since. Cause it was too late to do something about it.
I agree that having a laugh and some light relief is always in order (DH and I would also shock most people). But its different to share a situation with people who understand through their own knowledge and experience rather than someone being insensitive through ignorance.
Someone once said to me how lucky I was to have a Blue Badge.... yeah, right ...... and the child who has never called me Mummy to go with it. She was embarrassed as soon as she'd said it though.
Know what you mean about doctors Headgirl. We changed GP's when DD was 2 so her notes hadn't arrived. I took her to see the GP cos I thought she had an ear infection.
She was lying floppily on my lap, her hands in the traditional CP position, no head control, no language. Doc is looking at her. Asks how old she is. 2 I say. Ummm, does she sit up yet. Nope I say. Ummm, she is reaching for toys. Nope i say, how are her ears.
You could see he didn't know what to say and thought that maybe I hadn't noticed and was wondering how to break the news to me that my 2 yo wasn't 'normal'.
I let him burble on for a bit before saying 'well, she wouldn't fo those things would she. She has CP' The relief on his face!
But then you get some docs who say 'How do you know she has cerebral palsy? Are you a doctor?'
I answer then with 'Oh, I don't think she has, I think she's just lazy and has fits to annoy me. Should I spank?'
one of the mums from a toddler group I used to go to has a dd with cp. She has no movement. I saw this woman in the park one day with her two younger dd's, and they were racing around and she was trying to get them back so they could leave. She then turned around to me and said "I've never had this trouble with dd1". I just heard the other mum in the park draw in her breath in .
When I was a child my sister used to tell her school friends that if she was annoyed with me she would rearrange the furniture. And they believed her.
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