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)
If you are a member of a club, go to events, use after school clubs, swim lessons, ballet, theatre, church, orchestra, ask how many people with sn use their facilities. If it looks like their are less than in the population then ask why and what they are going to do about it.
If you have no one in your life with a disability ask yourself why and how that has happened.
Teach your children what inclusion really means (look it up)
Hi - just read your thread in chat & for what it's worth I think the comments you got were unfair. OK, the correct term is probably 'severe development delay', but anyone reading your thread would see you weren't trying to offend.
As background, my DD has Down syndrome and with that comes severe GDD (development is half her age, she cannot walk and has hearing & vision problems), as well as compex health issues.
Back to your question here, you actually sound fairly considerate, so these comments are meant for the general public at large, but what would really help us is:
1) Please don't stare in public - it's never helpful
2) Try and see her as the person she is, rather than your assumptions of what that condition means
3) Don't sympathise with me. I love my DD as she is, I don't wish
(i) I could make her 'normal'
(ii) "I'd been given the option to abort her"
(both genuine comments from random strangers in the street)
4) Please think about comments before you say them; the one that sticks in my mind is when one person at a soft play centre asked me in all seriousness if I'd ever tried to teach DD to walk Damn, wish I'd thought of trying to do that first, rather than wasting 3 years on daily physio...
5) If any of your DC do have a child with SN in their class, you would absolutely make the parent's week by including them on play dates / to any party...
Yes to what zzzz said... inclusiveness where it counts. At church, in the cub's group, at the children's choir, ensure that the 'difficult' 'odd' 'weird' 'quirky' child is welcomed and accepted for who they are. They will reveal their wonderful sides if given a chance, which they rarely are normally.
Talk to their parents.... we have become used to being sidelined because our children are the way they are. We know that most judge that it has happened because it's our fault aka ''blame the parents''.
Parents social lives revolve around their SN children's needs; but probably more than most we need to get out and have a laugh. No I am not going to cry on anyone's shoulder, or fall apart, or get angry.
Actually, forget my ones - just go for porridgeLover's 3rd one!
Or better still, offer to babysit for someone with a SN child. I haven't been able to go on a night out with DH since DD was born, and I'm guessing I'm not the only one on this board with that problem...
proudmum74 at #3
tattoos I think you could probably learn a lot just by lurking on some of the threads on this board. It is surprising how frequently we all face the same crap with family, friends, professionals and institutions. Lots of good suggestions above so my 3 are:
Don't assume a child has bad parents because of the child's behaviour, I truly believe that children want to be loved and liked and want to be 'good' (for want of a better word) so any child who is consistently behaving in what might appear to be a terrible way, chances are the parents are doing everything they can.
You might also notice we ignore a lot of stuff that parents of neuro-typical children would deal with. We very quickly have to learn to focus our energies on the most important issue. An example would be me getting the judgy pants' evil eye because ds wasn't wearing a coat in sub-zero temperatures. My choice was force a coat and he refuse to go to school or get him to school reasonably calmly but cold.
Please stand up for us when other parents are complaining about our children's needs or behaviour or whether they should even be in mainstream school. Some parents are truly vile and have very worrying opinions on anybody different
Mostly though, just be the kind enquiring person you clearly are. I never mind people asking questions about ds. You will find many parents of children with SNs massively under-play the amount of work they put in and how exhausting it all is. I'm trying to be more honest with people who ask because otherwise nobody knows. I would also say that we (en masse) are a pretty good source of support for ordinary parenting problems too, because we have usually tried everything and then found a whole raft of creative and alternative solutions too.
proudmum ds is 10 this year and me and dp have not had a single evening out together since a visit to a curry house to encourage labour when ds was overdue. I have only missed bedtime once when I got stuck on the motorway for 4 hours.
Thank you - honestly - I know I used the wrong term on that thread and I won't use it again, it'll be "developmental delay". Is learning disability OK or is it offensive, even if only a little?
I would never let the children stare (although they're older now but I wouldn't have when they were younger) or stare myself and I'd try to be understanding but I'd hate to offend someone or inadvertently (sp?) make their day any harder than it has to be.
YY on the party thing. I hear of so many kids with SN upset because they're never invited to parties. DS1 does get invited. He doesn't really interact with anyone there because they all belong in school, not out of school, but he enjoys himself, all the same.
My kids attended a small rural school and there just wasn't any kids with SN - apart from one child in the class below DD who had developmental delay and some sensory issues (sight and hearing) but since she wasn't in DD's class we weren't really in the position to be inviting or not inviting to a party. If she had been I'd never ever have left her out. That's horrendously cruel that children would be left out like that.
The fact you are asking makes me think you are already a kind person. I have just skimmed the other thread & also think you were unfairly attacked. Very few people tread comfortably in a world that they have no experience of. Before I had ds (3.8,gorgeous,globalally delayed) I'm not sure whether I'd have done some of the things that now drive me crazy in other people.
I guess I would say the main things are:
1) inclusion, & trying to influence those around you to do the same.
2) try not to assume someone can't or won't want to do something. Its often the case that with a bit if a work around,its possible. & if not,its nice to be asked.
3) I'm sure you dont,but I hate it when someone I don't even know states the obvious 'oh he's v small' 'oh he's a v late walker' 'his speech is v delayed,do you talk to him' (!!!). Maybe stick with generic conversation-wow,cool coat etc. Sorry if that sounds really daft!
Thank you for asking the question
Between 10% and 20% of children in the uk have special needs, so either the children in the school didn't have visible sn or they were discouraged from attending in the first place or transferred.
zzzzz - the school has grown in recent years but is still very small (50 pupils) so 10% would only be 5 pupils, and if they weren't in my child's year group, how would I know if they had a non-visible SN? Or actually, even if they were in the same year group, how would I know? The school would hardly tell me would they?
I can promise I will not state the obvious, ask a rude question, leave out an SN child and try to be as inclusive as possible.
Sorry zzzz that last sentence in my first para sounds rude, but I mean would the school tell us? Surely they wouldn't be allowed to?
Since my child has been diagnosed with ASD, I never look at screaming children in supermarket the same way because I now know that supermarket can lead to sensory overload and I know that the only thing the parent can do to calm the child is to exit asap. So if a child screams and parents rush, don't think of these parents as bad and the child as naughty. And if you catch yourself staring just give an encouraging smile!
Oh I had an epic supermarket tantrummer - I remember the tuts from busybody judgeypants people!
Which I know isn't the same as having an ASD child I know but that is something I can at least empathise a bit with.
Well if you knew ten children from the school, one or two of them in all likelihood had sn. If you knew twenty 2 to 4 of them did, so it's unlikely you don't know anybody with sn unless there is a selection process involved.
Of course school wouldn't tell you, most medical information is private, only the Mums could have told you.
I just heard today from DS2 that his friend (they are 7) told him his mum says DS1 is spoilt.
He has AS. We do things differently in school at drop off/pick up. She has obviously decided that is indulgence and it is nice of her to share that with her children
So, in addition to inclusion NOT meaning integration ( we don't all have to be the same), it would be really, really, very nice if people didn't just think it was as easy as 'putting your foot down' - and that goes for some school staff too!
Sorry - the fair point was to zzzz
Don't tell me you feel sorry for me or say "oh what a shame/pity" or even worse "oh how awful", when you hear my child has special needs.
Do people really say those sorts of things? (Actually from my thread in chat I suppose they do I'm just and )
People say really horrid things, and, on the basis that the majority of adults probably have considerably better social skills than my ds, who is completely unable to keep a thought to himself, I suspect an awful lot more people think horrid thoughts but refrain from saying it out loud
tattoos, thank you for even trying to tiptoe through what can be perceived to be a minefield.
as to the 'do people really say that?' - someone said to me, when I was pregnant with dd2 'oh, that's nice. now you'll have a chance to be a real mum'. because presumably dd1 is a figment of my imagination
and then, when pregnant with ds, people said 'oh, it'll be so nice for dd2 to have someone to play with'. because presumably, dd1 is a figment of dd2's imagination too
as for what you can do - zzzzz came up with a brilliant list. I owuld add - if you see a parent with a child with SN at a gathering, maybe off to one side a bit (either through dealing with child with SN, or because they don"t really know anyone else as they are always a bit on the outside) - please go and talk to them, instead of just joining with the rest of the parents.
I am regularly left out at dd2's school pick up/parents gatherings, because I oftne have dd1 with me. this means we stand alittle out of the way of everyone else, but no one stands with us to talk. we don't bite, or smell. we just have to stand a little to one side as dd1 gets a bit overwhelmed by crowds. it doesn't mean we don't want to talk to anyone.
I don't even know what to say. I'm just SIGH. It shouldn't be like this for you and your children. It isn't right. Or fair. Or. Or. Or.
Firstly thank you very very much for even asking the question!
I'm going to make your life harder now by giving some different answers.
With the greatest of respect to the other posters who've said don't feel sorry for them or say 'how awful', I've actually found it wonderfully helpful when my closest friends just came out and said how shit it was when we told them about bluechick's dx. It made me feel that they really felt what we were going through and were right there with us.
I didn't in any way take it that they felt bluechick was somehow sub-standard although I suppose one could take it that way from a complete stranger. Obviously I know the kind of people they are and so I was able to take their reaction as concern and an acknowledgement of how devastated and worried we must be which we were.
I suppose what I'm saying is take your cue from the way the person tells you. Our emotions are all over the place and we have down days and up days. We also have nightmares about the future, especially when we're not around anymore, and for that reason alone, YES, if I could wave a wand and make bluechick 'typical' then I would.
Bluechick is only 6 months and so I'm new to the SN world and I certainly don't wish to offend any of the other posters. I just wanted to give my view. I love bluechick to the ends of the earth and think she's just lovely in every way. But yes, I'm still devastated and scared for her.
I suppose I'm saying my three things are -
Please don't assume we're all in the same place emotionally. We're still all individuals.
Please be friendly to us, I certainly need it.
Please include children with special needs in all the things NT children take for granted.
And please if you ever know someone reeling from a dx, ask them how they're doing. Don't assume they want to be left alone.
That was 4 sorry!
And again, thank you for caring enough to ask.
oh agree, bluebird - my best friend has told me on occasion that she doesn't know how she'd cope with all the crap we've had with dd1. but then, she has known me for 25 years, and properly sees (and hears!) about all of that crap! I don't want the cocked-head, misty-eyed, 'oh, god only gives special children to special parents' nonsense.
but yes, sometimes, someone agreeing with you that life is shit at the moment, can be as good a distractor as anything else. I think the difference is the acknowledgement that this, right now is shit, rather than 'all of your life must be shit' that you get from relative strangers somtimes, iyswim?
For me, I am stuck at home with DS age 12 24/7, he can't access much due to his needs, nit even school. The profs are at a loss with how to help. However it's a very isolating world with DS and a laptop all day.
I would really appreciate a friend, someone to chat to, about anything. Someone to help DS and I try to access things. (DS is 2:1) It would be nice for someone to ring and ask if there is anything I need, milk, bread.......often run out, as by the time the end of the day comes we are too tired to even nip out. DS is 24 hour supervision. DH works a hard physical manual job and is up through the night with DS. It would be nice to get 10 mins with hubby alone.
apologies if that sounds sad, but when you've been stuck like this for years it becomes sad and lonely.
So sorry to hear that dev. Whereabouts in the country are you? (Don't answer if you don't want to obv!)
Message withdrawn at poster's request.
I can't find the thread in chat, can someone linky please, I want to await the bun fight, it'll be the only decent discussion I would of had today
Here you go <ducks and runs for cover>
I was actually really trying to be sensitive. Which got taken the wrong way.
Thank you all for your comments I promise I am reading and taking them on board.
I know you are genuinely taking an interest, otherwise you wouldn't of ventured here alone
Glad your taking the comments on board.
The whole thing has just made me think. And the last thing I'd want to do would be patronise or offend or be horrible or any of the other stuff that has happened to you all. It's just disgusting.
tat can you linky the thread in special needs also please
HQ were on the gin last night and deleted the wrong thread - they deleted the one in special needs not the one in chat.
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.
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.
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.
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
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!!!!!!!
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.
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
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.
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.
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.
Message withdrawn at poster's request.
A honk from me too!
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!
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.
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.
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.
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.
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.
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?).
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).
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 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.
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.
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
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