Here some suggested organisations that offer expert advice on SN.
What's wrong with your child?(58 Posts)
Apologies in advance because this is going to be a bit of a ramble. I have three children, two NT and one with ASD, SPD and dyspraxia. I had a bit of a shit of a day recently which I can't stop thinking about. I went to a local playgroup with one of my NT children and was chatting to a very lovely woman who I've seen at various groups over the past 3 years and occasionally have a chat with. She asked after my older two and then said "which is the one with the problem?" I was really thrown because it just seemed such negative phrasing. Then she went on to snigger her way through a story about someone she knows with "terrible aspergers" who (guffaw, guffaw) has now decided that he wants to get married. I mean whatever is he thinking? And she doesn't know what the "problem" is with this woman he wants to marry but she also clearly has social issues and together they are an absolute nightmare. The whole family are hoping it just blows over.
I honestly didn't even know how to react. I didn't really say anything and then busied myself with my child and moved away to another activity. I'm still quite upset about it though. I mean why did she think it was okay to tell me that story when I have a child with those types of issues? I can't stop thinking about it. I've had people ask me what's "wrong" with my child before. I just get so flustered that I don't have a comeback. I know I should think of a stock answer but also they aren't necessarily horrible people so I don't want to say something cutting and don't want to embarrass them. But also I feel like I should say something. Also, it's not like I can just give a simple explanation because her reactions and behaviours are so complex and there isn't always a simple answer.
Later that same day we were on our way to a birthday party which was a bit of a big deal because my child doesn't have any friends and never gets invited to parties. I'd done so much prep for it and she was really excited. Then, bizarrely, when we arrived, the mother of the birthday girl kind of uninvited us. It wasn't necessarily that she didn't want us there, I don't think. But because the other children there were unaccompanied and I was going to be the only parent staying, she said she didn't mind if we didn't come. Again, I was so taken aback that I just kind of mumbled something about it being no problem and then stayed, kind of awkwardly. But then there wasn't a party bag for us at the end. I'm trying not to read too much into it but I'm still really upset. My child did love the party and had fun. But I'm just left wondering what that was all about? Does she think that my child is just a blob without a brain? Why did she think my child wouldn't notice that we weren't going into the party or that she wouldn't care about not going in? It's just so weird.
Anyway. Sorry that's so long. Maybe I can stop thinking about it now that it's written down. I suppose I'm wondering really if you feel you should always be educating other people about your child's condition? Or if you have stock answers you give when people say things which offend you? Or if maybe I should learn to not be offended because, really, why would they know if they didn't have a child with ASD? I don't know if it's really their fault.
Wow that was a really shit day, wasn't it?
Bad luck, you met two horrors. Most of the human race aren't like that just as most aren't rapists or con artists, but occasionally you meet a real doozy. Two in one day is pretty bloody shitty.
Just because people have children themselves and are ostensibly your age and look fine doesn't mean they aren't horrors.
I have had similar gobsmacking revaluations.
Sorry posted too soon! I think there is a difference between people wanting to be supportive and interested but saying it in the wrong way and people who are downright ignorant and rude.
I cannot see how anyone's relationship plans should be a topic of sniggering at playgroup for most reasonable people (leaving aside celebrity gossip if you're into that). And "de-inviting" a child from a party on the doorstep is callous and rude beyond belief.
I'd be polite and give the benefit of the doubt to people who sometimes phrase things in a clumsy way but stear clear of adults who are treating anyone different or with special needs in this horrible manner. Neither you or your children should be expected to put up with it.
I think those people were rude and mean. And yes I would say it's their "fault". They behaved badly.
I don't think you need to say anything but if it would help you to have a set answer maybe you could prepare one?
I find that there are lovely, supportive, good hearted people out there (as well as the idiots) and fingers crossed you run into a few more of them in the future.
Thanks peeps. I think both those things are about people not really understanding that just because someone with ASD doesn't display their feelings in what might be considered a normal way, doesn't mean they don't actually feel anything at all.
Do you confront or correct people when they say things which offend you?
We are already so isolated. I don't want to push more people away. I suppose I am still a bit bruised from the pre-diagnosis phase and a bit exhausted from pushing for our EHC so I just want everyone to fuck off. But I should probably have a better attitude and stick a smile on.
I'm not good at confronting people. I find I get so upset afterwards that it's not worth it for me. Although I think I sometimes give people a hard stare (works even better if I have my glasses on and I can peer at them over the top of the glasses - like my Mum used to do to me ).
I wonder if you develop a thick skin after a while - my autistic DS is now 14 - and I can't remember any recent negative encounters like yours - but I wonder if I just don't really notice so much these days.
Two other examples. We have a very close family member who regularly posts on facebook what a saint they are for donating their free time to spending a few hours a month with someone they know who has learning difficulties. And how people have said they deserve a medal for it. It's so offensive. I can't say anything because it would damage a fragile relationship. So I say nothing every time.
I also have a friend who recently described the very worst of her child's behaviour using my child's name. So if my child was called Jane, she was trying to describe how horrendous her child's behaviour was and said something like "she doesn't just have tantrums, she has real Jane-style tantrums." Again, I just fluffed it and didn't go hold on a second, my child has a freaking disability so don't be so rude.
I know not everyone is a horror. But I do seem to know all of them.
Yes, I think I come off worse through confrontation. I keep worrying that I'm doing my child a disservice though and that I should be sticking up for her more.
I would definitely pick my battles.
There is a standard MN phrase you could use though, "Did you mean to be so rude?".
I haven't heard it much recently but I'm pretty sure that's the phrase. It comes with an optional head tilt. (Somebody back me up/correct me.)
Wow, the 'Jane-style tantrums' one is a shocker!
Statistically, you should have a run of nice understanding people for several years now.
I don't suppose it would work if I did a hard stare while miming some glasses.
I was instantly offended by "jane-style tantrums" but I think I've lost my ability to gauge. I can't tell anymore if I'm justified or just being precious.
I feel responsible for the world ds is going to grow up on so I do try to explain when someone says something particularly crass. I don't want him hearing and understanding those comments and silence seems like acceptance.
Oh myyy at some of things that have been said! I would definitely not stay quiet as I feel the sentence the person said will forever be playing in my mind!! Having said that it depends on how close they are to me
See, that's what I'm thinking. I really need to be more informational and find the right tone. There must be a way to explain to someone that what they've said is a bit shit without actually saying that. I'm always caught on the back foot and only afterwards do I think I should probably have said something.
I'm close to no-one, so I don't know if that helps. I've slowly weeded out the people who don't care or understand and it turns out there isn't anyone left!
Uninvited to a party on the doorstep?!! Where is the empathy there? Unbelievable. My DS and I would have been devastated....
How old is your child?
Over the years I have met some really amazing friends who are in same situation as me..it helps.
The two people you mentioned in OP sound like massive twats, worth avoiding.
God, the party bag thing makes me want to cry.
Yeah, you are right to be offended by the "Jane style tantrum".
It's all so awful. What a run of cunts.
You should address the Jane style tantrum comment. In fact, address them all. You aren't in the wrong. Objecting is fine
She's 4. I don't think she heard when we got to the party because I was busy getting everyone out of the car, so she was happy as a clam. And while I do think party mother is generally a bit of a massive twat, the playgroup lady is a very sweet grandmother who says she used to work with children with special needs so I really don't understand what happened in that conversation. Maybe she was just trying to be chummy.
4 is a hard age when it comes to other parents. One mum invited another family to her child birthday party when it was just me, DD and them in a tiny room.
One asked me what the matter was with DD. Preschool was he'll on the other parent front.
Now she is 9 I have lots of friends with kids with ASD and it's much easier. It will get better.
People sadly can have shitty attitudes and work with kids with SN.
Your skin will also grow thicker in time..I often got teary at preschool due to attitudes to DD.
Now I actually don't notice attitudes or if I do they get short shrift.
It really will get easier.
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