Here some suggested organisations that offer expert advice on SN.
Right. I have a question for you all.(66 Posts)
I have no direct experience of SN. None. Nada. Zilch.
As a non-SN experienced person, what are the three things that I could do/change in my day to day life that you would most appreciate?
(off the back of my chat thread where I know I used a wrong term for example)
(I hope I don't sound patronising)
One of the things that means most to me is when someone treats me like I'm a 'normal' parent - which I am (both of ds with autism, and dd who is nt). Disability doesn't discriminate about where to strike - anyone can have a child with SN, and being a parent of one doesn't make me any different from any 'normal' one. Just have a slightly different set of circumstances to live with.
Another thing that makes me sad/angry/despairing is when it is obvious someone is squirming with embarrassment and won't/can't bring themselves to use the 'A' word. Like ds's condition is something taboo, to be embarrassed about. I would love to talk more to people about him and his condition (as long as it's because the other person is genuinely interested, not because they're only asking out of prurient curiosity iyswim).
Suppose it's a balance between acknowledgement and understanding of ds's condition (and how it might make things difficult for him and result in 'different' behaviour), and that not meaning they see him as a lesser person, or me as a 'different' kind of parent or person.
Since ds has had a dx, the true friends I've made are those people who aren't frightened off by him and genuinely interested to know more about him (both good and bad stuff), and the more they know about him the more they'll understand him - like any child I guess. If someone treats it like a taboo subject it's like denying his existance.
Then there are those who seem interested him but whose eyes glaze over when I start talking about the boring stuff like getting support at school etc
So, very rambling I know but I spose the 3 things would be:
1. don't be scared to bring up the subject - the mum/dad might be really pleased that someone is interested for the right reasons (ie not out of freak-show motives)
2. try to see the child as a child first and foremost. A child is not a disability.
3. treat the other mum/dad as you would any other - they're just normal people with different circumstances, and you can be friends while still acknowledging and understanding their child's disability
And 4. pass on the attitude to your children that other people who are different (in looks, behaviour, mobility etc) are nothing to be feared but a part of our society
I am incredibly touched and moved that you've all taken the time to reply and I promise promise promise I'm taking everything you've said on board.
I also agree with the ask what can I do. My ds has cp, and can't walk or stand. He uses a walker. This means for example when he goes through wheelchair adapted electronic doors they start to close before ds is through them. Someone else pushing that button may stop my needing to be an octopus or doing my back in. But he's not strong enough to open normal doors.
Also he can't walk but he's not a baby. If you see us don't treat him as if he is much younger, he can answer for himself.
If you are curious ask, don't assume. I might tell you, I might not. But if I'm asked I will always be polite whatever else is going on. If you make assumptions I might just be rude. I won't intend to often (well not given you are clearly so nice) but if I am abrupt give me a bit of a break, whatever day you've had it's likely to be for just a day. Often whatever is making me grumpy is making me grumpy for months ( think fighting the system when the rules change daily, no-one cares as much as I do, and there's no money or time )
Don't assume I am only interested in my child, or his condition. Yes I could win mastermind in cp, but I am also a fully qualified and trained professional in my own right, widely read, political and have opinions about many things, just like anyone else. Sometimes I just want to forget about one aspect of life and be me again.
1) Don't tell me that your niece/cousin/cats-sisters-brother has the same condition. No 2 SN children are the same, if you've met one child with a diagnosis of X, then you've met one child with a diagnosis of X.
2) please don't tell me that you're "sorry to hear that" or "that must be hard for you" when I tell you the condition.
3) please try not to tut or cats-bum-face me when dd is having a meltdown, (especially when accompanied by point 1)
And a 4)
I know you said 3 the loveliest thing was when a stranger came up to screaming dd in town, got down to her level, told her her name and asked she wanted to stroke her very calm dog, turned out he was a therapy dog and she stayed with us until dd calmed down.
I would agree with the comment about the little things that make the difference, as in just a calm "what can I do" when something is clearly going wrong, and then actually doing something (a big shout out to the lovely staff member at Waitrose in Brent Cross a few weeks ago, when DS was stimming on the sliding doors and failing to allow me to pay for my shopping. She put the shopping through, packed it all up and put my card into the machine while I stood outside with him at the doors, and then went outside and watched him at the doors for the couple of seconds it took me to put my PIN nuber in the machine. Now that made a difference to my day).
Yes, people really do and did say "oh what a shame/pity" (a number of friends, some of whom have just suddenly stopped contacting us) and "oh how awful" (actually from a psychiatrist who I was seeing for anxiety and depression, great, huh?).
1 no stupid comments like one person said to dd dont make those silly noises.
2I like talking about dd she is my dd and I love her very much when people find out shes autistic they are so scared of saying the wrong thing that they change the subject. Which upsets me as I like to talk about her.
3 Dont try and cheer me up about dd disability I have bad days and sometimes just need to feel it.
You sound lovely op.
For me it's simple I would just like to be included,just because DS doesn't like social situations and company I do.
A cup of coffee and a chat with people in real life could be the only time I get to be normal in weeks.
Starlight - I wouldn't take it personally I hope. Shitty stressy days are horrible for anyone, SN child or not, and I'm sure SN parents get many more than non-SN parents do.
Tattoos, I'm afraid I also have to warn you that aren't s of SN children aren't saints and are a mix of personalities like everyone else. If your offer of help is rejected don't take it personally. The mother coukd be stressed and taking it out on you, paranoid you are taking the pee, too tired to say thanks, humiliated at the offer of charity or just a bitch.
We can't all always be grateful and humble. Sometimes we're just getting through the day iyswim.
Thank you all so much. I can promise you have made a non-SN parent think and I can also promise I'll approach you, offer to help, make normal chit chat and try to be tacktful.
Personally I hate it when people say 'whats wrong with her' and pointing to my daughter I would much prefer to say hi to my daughter and then ask I we could explain her condition. I also hate how people stare often it is just because they are curious! But when your child is shovelling food on the floor in a restaurant staring is the worst thing! Maybe offer help of you ever see someone who you think could benefit? Even of its a mother trying to get a child into a pushchair mid meltdown or getting them out of the way of danger? Maybe offer to step in hold bags or puschair? Or offer a distraction! Often the tiniest things are the best! Also I often now see many place that arnt suitable for wheelchair users, even though my dd is mobile I see things differently now. And most of all I absoultyl love those few people who look at my daughter when she had her ventilator mask on and tell her how beautiful she is a how good she is! It really makes her happy, even if she doesn't quite understand it, seeing someone talking to her instead of staring makes her soo happy! Happy miracle =happy mummy!
Well, instead of spending my evening tidying up, I have been skim reading the some of the other threads in here. I am just more and more and more shocked - the more I read the worse it gets.
Oh and can I be a honky person? If you'll allow a non-SN parent to honk I'd be very proud to.
Yes yes yes to the 'he / she will get there in their own time' comment. It's not reassuring, it suggests that the person saying it hasn't taken on board the implications of your DC's diagnosis.
She is NOT simply doing things at her own pace, she has a chromosome disorder. I'm looking at you MIL.
And the best thing that has ever been said to me in difficult moment has been 'what can I do?'
Usually it is something as simple as saving my space in a queue or guarding my shopping or holding my ds' pram still.
I think everyone else has made the comments I would want to,,, but I just wanted to echo those who have said actually if you are interested and over here asking then you are likely not to go too far wrong... and thank you
My 2 would be
- If someone tells you their child is developmentally delayed, don't try to offer support in the form of -
'Einstein didn't talk until he was 4!!!!!'
'Boys are always a bit more lazy, he'll get there in his own time...'
- before you judge a - bigger child in a pushchair, a screaming child in a supermarket, a child making noise or mess or eating their own food in a restaurant (or any number of potential AIBU scenarios) bear in mind that these things may be more difficult if a child has sn.
If I can just illumiate you further. You may or may not be surprised to know that having a child with a disability is a shock, but not half the shock you get when you then have to engage with 'services'.
Oh my word!!!!!!!
oh dear, was curious to see the comments, did you get some good advice?
At the end of the day when special needs are involved we do put our other kids in compromising situations. This always makes me think how disadvantaged my other kids have been, especially my DD closest to my DS. We all also know what they are capable of. Still doesn't make it right or wrong, just shows help is needed x
In response to silverfrogs post, I got impatient with a couple of family members when they tutted and gave looks at me to discover I was pregant with no.3 when ds was disabled, as if it was really irresponsible.
I myself told them that I was simply having a replacement for the 'faulty one'.
Idiots. My 'faulty one' is my light.
Well I hope you tidied up for me coming and where's my ???
Seriously though, thank you all for understanding my hamfisted attempts at sympathy. And if I could I'd babysit for any of you in a heartbeat. And supply coffee and cake and wine. I take and have taken so so much for granted.
TBH, it is just nice to have a visitor here once in a while.
This board is hidden from most so it takes effort to visit, and usually our visitors seek it out because they have an axe to grind rather than offer support.
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