Thoughts about talking about SN in RL

[supportman]

Just wandering what people's thought were on someone starting up conversations about special needs. The reason I ask is that yesterday my collegue and myself took one of the kids swimming at Maidstone and while we were there we saw someone with a little boy who, at a guess, I would say was autistic, and have been in many similar situations. I have never initiated a conversation with someone but on a few occasions had someone start one with me/us.

Obviously people talk about all manner of things SN related on MN and similar sites, but generally would people be offended if someone was to start chatting about SN in RL ?

Personally I don't like people asking "what's wrong with him/her", but I suppose its better than the staring ect, but with someone who knows and understands SN I think its good to exchange experiances and tips ect.

I have often wondered the same thing - a few weeks back we saw a young boy who looked like he had CP, we really wanted to start a conversation but didn't know where to begin. I personally am very happy to explain what wrong - the times I am with dd in a swing park holding her around her tummy and helping her to stand - people assume she is about 9 months old and when they ask and I tell them she is 18 months old they just go 'oh' and then quickly walk away embarrassed! Today at a birthday party it was very refreshing, a friend who I hadn't seen since dd's diagnosis positively grilled me on the subject - it was liberating to be able to talk about what is a huge part of our life.

Hi supportman. I usually start a conversation about something else child related until the conversation leads round to SN.. which it generally does, because I will talk to anyone about DS's SNs.. tis the only way I stay (semi!) sane!

I have a bad habit of talking about wheelchairs. I will admire the wheelchair from afar and realise I am being a "starer" so feel duty bound to go and speak. If dd is with me it is a done deal as she starts staring and smiling.

A while ago I was at a soft play centre and ds was on the bouncy castle with a little boy who had Downs syndrome. His mum and I kept glancing at each other and giving little smiles but neither of us had the courage to start a conversation! Still it was sort of comforting to know there was someone else as pathetic as me .

SHPHH,
I was going to say that I felt as if I 'overshared' re DS' SN, hasn't really kept me sane though!

Eg today at B.day party, fine in the play bit, went in to tea and there were blow out/whistles on the table all the 3 yr olds started blowing them and DS just hid his face in my neck and held onto me HARD, he was quite obviously distressed - he couldn't have got any nearer!

I felt people were staring and ended up explaining (excusing?) to another mum (never met her before)all about DS' SN.

Aly, I was probably being over optimistic lol.. I'm not very sane either. But then I am bearing the bruises of a weekend of violence from him (and he is only 7 ). Its one thing me and DH having those bruises but I wish it didn't have to be DD as well.

Sorry. Off topic.

Hi, I goto a special needs playgroup, and all the parents openly ask eachother about eachother's children, and problems, etc. It is quite nice to be able to tak about it without anyone feeling embarrassed. It is refreshing, because we know there will be judgements. However, my s-i-l came to visit recently, for the first time in 6 months.My dh told her about ds, she
looked at ds with strained look on her face, looked at me (in thinly veiled disgust) and exclaimed 'no-one in our family has it'. She then left very quickly.
Some people are just so ignorant, and my ds is better off without her, also as a bonus - keeps her out of my way asell .
It is nice if people ask, at least they don't feel embarrassed. (But obviously not to behave like s-i-l!)
But I am new to all this. People would ask me before the diagnosis, and make me feel it was down to bad parenting. Now I have something to say, but no-one has asked me yet. If you ever see me in Ilford, toddler shouting jiobberish at passers by, feel free to ask me why he does that. Please.

ooooooooops!
that should obviously be '.....NO judgements'

i've compared major buggies with another parent in Debenhams but we virtually bumped in to each other other than that I've never had the courage although I guess I amy have looked like a starer at times.
SN pre school was great though all very open & up for a chat.

supportman, it is good to talk I suppose, I am new to the sn way , and I am either very uncomfortable when people ask(have they got all day?) and because I am new I am still learning, so if my ds who is still young is being hard work people probably do think he is an out of control/badly behaved big toddler? or am I kidding myself?

I also don't feel I know enough yet to explain my ds's SNs

I am still very tearful too, so I am quite scared of crying in public, I have done it recently.... how would people who ask cope with that?

I also am not sure whether to tell mums at nursery ... ds got invited to a whole class party and I had to reply by today, I just wimped out and said he wouldn't be there because I thought I could not face it... yet....

Unfortunately my DD's "disabilities" are not apparent to others who do not know her - Sotos syndrome - very tall for her age, delayed development, missing teeth (some taken out, some lost early), looks about 7/8, wears 7/8 age clothes (hard to dress her appropriately), size 2 shoe, but she is only 5.

She is nearly as tall as her "big" brother who is nearly 11 and wears only 1 size smaller shoe.

Given the first opportunity, I will discuss her and her "needs" because if that makes people more accepting of her, because of her size, I will.

I like to think of Sasha of being on the bus behind everyone else. Her bus is running a little bit late, whether that be walking, talking, social skills, but she looks so much older than what her actual age is. It is hard for people to see a child of looking 8, actually 5, acting 3.

If I can explain to people and it makes them more accepting of those who are a little bit "different, if they accept it or not, that's up to them.

At the end of the day, if she can be the best she is, whatever that may be, I will be happy as long as people do not "judge" her, which, in this day and age, so many people do.

I like to say that people will judge Sasha on her being a tall (which she will be), leggy (which she will be), blonde (which she will be) although she might prove that blondes are daft (and if she is daft, so be it).

I just want people to judge her on who and what she is, and not what we expect people to be at whatever age they are.

If they cannot accept her for who and what she is, then that is their loss.

I would rather be asked what is wrong with my dd than have people making assumptions and getting it wrong.

For us, conversations usually start something like this, when someone spots dd's height: "Gosh, she's nice and tall, isn't she?... How old is she?... You're joking!"
I can then say why she is so tall, and that it isn't all good because of x,y and z reasons.

I can imagine that it would be more difficult with a less visible problem. I find it much easier if my dc's are there to test the water by asking the child if they want to play!

AFK, Hugs to you(((((((((())))))))!!
I feel a little teary sometimes too.
My ds was up last night from midnight till 4 am. I am so tired all the time, I think I have got used to it now. I used to go tolocal toddler groups, but got fed up with the disapproving looks. So many reasons for them too:my somewhat less than yummymummy appearance, my ds's constant tantrums and refusal to share, his tendancy to lash out when another chid touches him. It just got so exhausting! I suppose I have been hibernating from most other people and have retreated into a world inhabited by other more understanding parents. That is until I have to go 'OUT' to places wher nts hang out.
The good bit is that I don't have to put up with other competitive parents any more i.e. my darling can go to the toilet all by herself, etc.
Take care of yourself, and come on mn and talk rubbish, I do!

Sorry Bumblelion, cross posted with you then.

My dd has got marfan syndrome. She's 4 and is a similar height/shoe size to your dd.

Deepbreath, Marfans syndrome, I believe, causes the same sort of symptons as Sotos syndrome i.e. large stature, low muscle-tone.

It is very hard, as I am sure you will agree, when people say how tall your child is.

I have two elder children, no syndrome.

My son, age 10, asked, when Sasha was first diagnosed whether he had a syndrome which meant he was small for his age - unfortunately neither I or his dad or tall (me, 5 ft. 4", dad 5 ft. 9") and he takes after his dad who. at the age of 40, still looks young and fit (although I am not longer with him).

Dan takes after his dad and I tell Dan he will be just like his dad, very fit, slim, young looking.

Dan just knew that Sasha has a syndrome which makes her tall and behind and he wondered whether he had a syndromne which made him small (although actually he is perfectly in proportion, very fit, although only 10 years old).

Again, accept who and what you are. Dan will never be tall, fat, muscular, but will be young looking and very attractive - take strength for who and what you are.

(Sorry for thread hijack)

Hi Bumblelion. Yes, you're right about marfans. We're having lots of accidents thanks to dd's poor co-ordination/sight problems too.

Even people that know dd tend to forget her true age, and expect her to behave like a 7 year old because that's how tall she is. Being 4, that's a bit of a bummer.

Deeeeja, your SIL sounds the same as my MIL. Never mentions dd. I'm told that side of the family never discuss her or ask after her and we never get invited to their posh do's or chateaus in goodness knows where.
Probably a good thing as we are scruffy types.
I tend to notice wheelchairs first but do get curious about what other people's kids have. I'm quite happy for poeple to ask about dd as long as they don't whisper 'does she understand' or go into over-gush mode (more than you would with an NT 3 yo) in order to show me how PC and with-it and disability friendly they are.
But I have started conversations about wheelchairs or gadgets I've seen other people with.

I found it hard to talk about ds2 in the first year of being diagnosed with Autism, i felt like i was going to cry when i was talking about it. I find a lot of people ask about ds2 and dont ask about ds1 and that really bugs me. My ds1 also has special needs (adhd) which in my own experience seems to be accepted but mention Autism to people and they panic and stop asking.

I meant to say people ask about ds1 and dont ask about ds2 i got it the wrong way around there!

I agree that autism is an uncomfortable topic for people, before getting to be a part of the sn world I don't really know what to say, but I am pretty awkward at social nicities anyway, small talk puts me on edge.... but I think people know so little about sn in general that I do understand people feeling awkward, ignorance takes many forms, but I do think having a child with sn now adays isn't as much of a social taboo now, maybe I am being naive?

I have a friend who hs a nephew who has autism and says that her sil does not talk about it, I can understand that now, and I feel angry with my friend for being stroppy about that....

My friend from school has Marfan Syndrome, she is a primary school teacher now.

Sorry folks, that's all I can add - except I hate when people say "Doesn't he ever stand still?" Because it (unfairly) makes me want to punch them.

I have to admit, I tend to look at wheelchairs too. I am often taken aback by how 'gadgety' they are.
I grew up in ignorance and never understood special needs as a child. I have one cousin who is developmentally delayed but no-one was allowed to talk about it . She was lovely and played with me when I was 6 years old, the only adult I ever trusted!
My mother told me to stop playing with her,and not to talk to her, very confusing for a small child.
Unfortunately that kind of attitude still exists in Asian society, hence the attitude of my s-i-l. When my son was dxed with autism, I did wonder if any other Asian parents had children with autism, because I had never met any. I have now ofcourse, and I hear the same story again and again. THe in-laws and other relatives blaming the mother, turning their back on the poor child, acting as if s/he doesn't exist, etc.
I feel that I should do something to raise awaremess within the Asian community.I jsut haven't thought of what I can do yet. I will publicise it here when I do though.
When Ramadhan is over, I might have more time and energy.
There I go again, rabbit rabbit rabbit!
Sorry about grammatical errors, poor syntax, etc. Lack of zzzzzzzzzzzz

Thanks for the replies people, it has given me a bit more confidence to atleast say hello when out and about. (I think thats a big problem in general society today, no one tends to aknowledge people and you hear of neighbors that have lived next to each over for years and don't even know each overs names)

As for finding yourself staring at other people with special needs, I can sometimes look for a bit too long if there is someone in the distance, as I am looking to see if I have worked with them in the past and I have often spotted people that I know too