Can I Ask You About The Attitudes Of Your Friends With NT Children?

[boolifooli]

My DS who is just 3 has ataxia and walks like a 1 year old. I have often felt frustrated and sometimes even hurt by some of my friend's comments. One friend has a penchant for saying things along the lines of 'isn't it a shame he can't walk and run like other children, I feel SO sorry for him'. Maybe it shouldn't but it makes me want to scream! I have avoided her for several days after some of these gems. I do like her but I really wish she would try to be a bit more positive for me. I mean does she not think it has never occured to me? Does she not realise how much I worry all the bleedin' time about his lack of upright mobility. Argh, today I'm feeling like Peter Griffin doing a segment on 'You know what really grinds my gears' lol.

Most are OK'ish, don't get it but are OK.
I have one who for the first 5 yrs just said "Oh my Kate was just the same at that age", (kate doesn't have CP or ASD btw) well meaning & meant to be reasuring but bloody annoying.
I have another friend who just oozes pity & is all "poor little mite, what will become of him"

The friends who are great & just take ds2 for him are childless.

Your friend sounds like a git, boolifooli. She sounds like it's always all about her ("I feel so sorry for him"). WTF does it matter how SHE feels. I know it is difficult for people to be positive without sounding patronising, but she should try a bit harder!

my oldest friend was fabulous, really supportive, understanding, helpful the lot!

Then she had a baby, not her first but a huge gap (20 years!) and she started going on about how it would be the end of the world if he didnt walk (my ds is wheelchair bound) moaned how her xp wanted to see the baby more often (my ds's dad visits him twice a week for 50 mins if he's lucky!) and various other tactless comments...we rarely see each other now

I think even clever people become a bit dim arround disabilty.
one fiend(worked with kids with SEN) decided to tell me how difficult her DH found her dd(same age as mine) I was gobsmaked at her insensitivity, tbh glad we lost contact

I would want to scream too boolifooli although I would probably just dissolve into tears if anyone said that to me - friend or not!
My dd similarly struggles with her walking and her running looks very strange. My friends rarely comment about it but I'm the kind of person who worries about what people are thinking so it's what they don't say that I worry about iykwim!

I do get annoyed when friends with NT children go on and on about really trivial stuff that worries them about their children - probably being selfish but I'm thinking FFS!!!

Anon - It's the pity that sticks in the throat isn't it, gah, I want his abilities to be celebrated, that's not too much to ask is it?

Sickoff - You're right, I'm a lot more interested in how he feels about it, I can't be worrying about how sad she finds it.

Glittery - what a thing to say, speechless. Lord hope I have never sad anything so bl**dy thoughtless. Although it does remind me of my ex's sister saying, as I was watching Somehing Special with DD, 'I would hate to have a child like that'. At the time I hadn't even had DS but I gave her a bit of a talking too. Grr

2shoes - this is what I don't get, at this time in my life I want to be handled, by my so called friends, with the tender sensitivity and support that I would, and have, afforded them through their trials and tribulations. I have had days where I have been in so much pain I just couldn't run the risk of hearing anything that might snap me in half.

Busy - Yes, must remember to come back with what a happy chap he is and how he is getting a whole lot out of life regardless of his difficulties. I just clam up, it's like flinching from a blow, that can't be right can it!? Feeling like that around a friend.

Scottie - I hear you! I have had that a lot. When DS first stopped walking and was still deterorating I found it impossible to listen to friends moaning about traffic jams and stuff. Even now I just have to get away from it when I'm having one of those days where you're just swimming in worry. And yes I too get tied up worrying about what onlookers may be thinking at times, it's human! Generally speaking I'm much better though now, thankfully! I'd literally stopped leaving the house which isn't ideal.

i have few NT friends one of whom has 2 nephews with ASD so understanding

another that thinks its a competition between her nt son and my ASD ds i have to keep reminding why he can do these things yet you would have thought it would have sunk in by now takes great pleasure in bragging what he can do better than my ds do not socialise with her at all now

most have been good some are just ignorant and forget why my ds is as he is and compare a lot but i have learnt to switch off and then say oh well its good he can do that ds will do one day too shame people see it as a competition considering my ds has ASD and yours doesn't

i have the what a shame and his so good looking

i am immune to shite comments now and usually can give a comment back quick as anything to shut them up lol

I am now avoiding most of my NT friends apart from the childless ones - who don't ask questions about "Is he doing such-and-such yet?" or go on about their own DC's latest achievements. Nice comments from mums with their NT babies (before I stopped seeing them) included "Look at his arms, they're just like little flippers!" (as he holds them very stiff) and "What a funny position that is" (as his little torso twists). These from people who know he has CP as well.

Yesterday the bloke in the dry cleaners asked me "Is he ill or something?" I just said yes he has a cold!

people are fine. we get a lot of "I don't know how you cope." "BOTH of them?" "You are amazing" etc etc comments. People mean well. I just say that i don't think it's any harder than having nt children, just a different set of challenges. And that I find nt kids hard work and weird!

Being a parent is hard, whether the child has additional needs or not.

My friends are ok... lol that is why they are still my friends
A few dropped by the wayside on the journey here though....sometimes it was me and sometimes it was them but it was just a sense that our lives were going in different directions that made it difficult and so it was easier to cool the friendship.
Occasionally (very occasionally) my mates do say something which if it wasn't coming from their mouths i might think .. but i know that somewhere along the line they have fallen in love with my kids (as i have theirs) and i can see it as just a clumsy comment iykwim.

Meant to add...
i know i have made equally clumsy comments about their nt children in the past

Ds is wheelchair bound (CP) and has SEN as well. Dh BIL (note he is NOT mine) once told dh's mam that the reason he never looked at ds, let alone interacted with him, was because he doesn't do disabled.
IMO thats a good thing because I don't do Useless Lazy Cunts like him.

Mostly they mean well but there is no way the commentors can really understand what effect the well-meaning comments have inside you, is there?

You need to develop a thicker skin, and brush off the comments, or reply with something along the lines of what busybeingmum says, trying to look on the positive.

If you let all of the comments get to you, you will not survive!

Most people mean well, but genuinely do not know what to say.

Most of my friends have no disabled children. DC's like ours are rare, you cannot go through life not making friends with a huge swathe of potential buddies because they make a few gaffes about your dc's disabilities! Life is too short!

(cowers in corner waiting for flak)

Yeah I think the point here is that a few gaffes are to be expected but a general and consistent attitude of pity is not helpful. I just don't want to be pitied, I want to be treated NORMALLY, not like the worst thing in the word has happened to me and that I am seen as being removed from 'them' and I think our DC wish the same too

But don't sometimes even we think that the worst thing in the world has happened? Most of my friends probably are so grateful it didn't happen to them - and I don't blame them for it.

Exactly Mars
Equally i admire some of my friends ability to cope with other issues in their lives and am grateful i haven't had to go through the same thing.
I'm sure i have made stupid gaffes about these things to them...trying to be supportive but with a lack of understanding.

Of course we feel like that, but sometimes I feel like i am coping and it's do-able, and then I want my friend to not be the stuck record of 'woe is you'

Then tell her! (kindly if she is your friend)

siouxsieandthebanshees: OMG!!! I am in shock at that comment! That is disgusting.

I know what you mean though boolifooli about not wanting pity.

When we went to DS Cousin's 2nd Bday party last month, they had a bouncy castle outside and there was a lot of older kids and no younger ones or the same age as DS. This suits him fine as he likes older children when he is in a good mood. But all the family members were comparing DS and his cousin and then would make comments like "What a shame." and "Don't you just feel sorry for him."
I got so wound up after 4 hours of these comments I just said (to to MIL )
"no, no it isn't a pity, no it's not a shame. Look at him, he's laughing, he is perfectly happy right now.... and oh, look over there your "perfect" grandchild has just bitten someone. What a shame for you."

dd and the rest of us went through such a thoroughly grim time before diagnosis that I think everybody was just relieved for us when her disability was recognised and she was allowed to start using aids

which is what we felt ourselves

don't think any of my friends felt that sorry when they saw her in the wheelchair- they'd seen her crawling on the pavement

dd herself feels very much like meltedmarsbar- if I cared that much about silly things people say, she says, I'd never make any friends and I need friends if anyone does

also, during the past year, her best friend has lost her mum to cancer and her other friend has ended up in a totally grim school where she is very unhappy: I think dd feels she is the lucky one of the three

doesn't mean I can always feel it of course

but tbh misguided sympathy is absolutely the least of our problems: we've had so many attempts to deny that dd is disabled at all and so many accusations of making it up or causing her problems by poor parenting: having somebody feel sorry for her makes a very refreshing change

with the attitude of some people we know.
We constantly get comments like "he is just naughty! He is playing you up , this behaviour isn't autism!!!" ...i boil inside when i hear it! I want to be rude back and say "and what makes you an expert on autism ??? are you speaking from experience???"
People feel they have to pass their own judgement on DS's behaviours and of course it is their duty to tell us he is simply a naughty child who happens to have much trouble with his speech and socialising with his peers.

Of course, i wonder why i bother taking him to see all these professionals then,...i'm obviously wasting my time.

'autistic children can be naughty too you know?'

We've had that. Trouble is, I celebrate it when he is. Almost 3yr olds are 'supposed' to be naughty. It's a GOOD thing. I 'want' him to be a cheeky soandso who is capable of arguing back and deliberately winding me up.

Most of the time he is just wandering along in a confused bubble.