What's wrong with your child?

[MabelBee]

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.

Well that's good to hear because we have taken a kicking these past few years. We have a placement at a lovely special school from September so I'm really hoping to meet some more like minded parents there and hopefully we can foster some friendships for her.

Oh I think things will really look up for you then, also venting on here helps, I did it a lot!

I do enjoy a good vent. I usually just whinge ferociously to myself in the car or while washing up.

Feel better for posting anyway. I can shelve this now and prep a response for next time.

Better out than in!

I trained my other kids to blurt out in a loud voice 'but mum isn't that a hate crime / disability harassment' when someone said something really crass about their brother with autism .

There are so many people about who could do with a good flick on the nose!

Ended up chatting with some kids from ds2's class and they were falling over themselves to find the right words. If 9 year olds can be thoughtful, then it shouldn't be beyond an adult!

I've only had the what's wrong question the once and I took it completely at face value. Ah, he's just got a bit of a cold. Turned out to be quite disarming!

I had 'what's wrong with your child' from a senco at a pre-school we didn't end up going to. Current senco not that much better though to be fair.

Sending a huge hug!

I think you should actually give yourself a huge congratulations that you kept so calm in both situations!

Some people in life are so naive and I actually pitty those people.

I love my own sister but when she asked me if I thought my son (only 3, S&L issues and poss ASD) 'would always be retarded'...rather than correct her un pc, naive attitude, I just felt glad that I was my son's 'less narrow minded mum' and greatful that my sister's children don't have any difficulties they would need to rely upon her as an advocate for! She loves her children dearly but clearly doesn't 'get' anything outside 'the supposed norm'!

You are a better mum for your understanding that life isn't black and white! Xxx

I once took my son to the GP and she had to check his legs so when she attempted to touch them he refused, she literally asked 'what's wrong with him?' I made a complaint that same day. Bloody hell if professionals aren't understanding how the hell do we expect others to be understanding when they lack even more knowledge!!

I think it's that negative language that is probably the easiest thing to address except I only think of what to say afterwards. People's attitudes and preconceptions can probably only change from experience - so my in laws, for example, said some quite stereotypical things about some autistic children they know of but don't know very well, before we had our diagnosis. Things about all autistic people being violent etc. Now they know better, because they have experience of our child who is anxious mostly, but can also be a happy little beam of sunlight and who is never violent.

But those types of comments, "wrong, problem, blighted", surely there is a stock answer. If I could think quicker on my feet next time, perhaps I could say "Well we don't consider her to have a problem actually. She is perfect in every way" with a big smile on my dial so that they aren't offended. Or maybe it doesn't matter if I offend them. They are offending me after all.

In a professional capacity, doctor or senco, they need a complaint though for sure. I have never complained officially. Although when I last saw a GP for myself, during which I sat and cried because I was pretty much over the line of losing my shit from stress and exhaustion and depression, she couldn't cope with my daughter's anxiety and asked us to leave before the end of the appointment because she said she couldn't handle the screaming. So I left, crying, with no help. She must have thought I liked living with that noise 24/7.

Just reading the OP. I am thinking that the other stuff has gotten rawer because of the party incident!?

I'm thinking the party incident was about the party host having the manners to invite all from a group (whole class?) but assuming that you wouldn't come. The invitation to 'not come' wasn't because you were unwanted but because she realised she hadn't made a party bag and wanted to save face!?

All I can say is that things seem to get easier as your child gets older. I don't know why. Perhaps it is because you get both a thicker skin and filter your 'friends'.

'Do you confront or correct people when they say things which offend you?'

Not unless I have an army. So I build armies. When you have a couple of other parents on your side you'll do better. That takes a lot of time and isn't so much to do with YOUR actions, just your revelations as the years go by. You'll find people who will stick by you, and who genuinely want you and your children. It's hard to think that when you're struggling but it will happen.

Even online armies can help. They might not be there on the day in person but knowing they exist is essential.

Oh and a note about children's parties. They REALLY don't bring out the best in the hosting adults.

What they are praying for is kids that make no noise, do as they are asked, eat the food appreciatively, sit down to eat, don't wind each other up, don't ask for anything that isn't provided, don't hurt themselves or each other, don't whinge, manage to do everything within the paid for timeframe, and still have THE BEST PARTY EVER!!

If on top of that child with difficulties turns up that due to their ignorance they weren't actually expecting and don't have a party bag for.........

If the woman isn't vile usually, I would make a point of saying 'Thank you so much for the party, x really enjoyed it'. If you're brave you could add 'X was especially delighted to be invited by Y as X talks about Y quite a bit. Would Y like to come around next week? We are available on these dates....'.

Yes, I do think so. I was caught off guard by the party thing but I don't think it was done maliciously. Her phrasing was more to let me off the hook so that I didn't have to stay. I actually went home to check whether my child's name was on the original invitation, just to make sure I hadn't misunderstood! My feelings afterwards weren't about us not being wanted at the party - I'm more concerned at this feeling I have that she didn't think my child would notice or care about the party. Even though we have been at this school and have known these children for nearly two years now, my child is still so misunderstood. She actually really loves other children and whenever she is included, which is rare, her whole little face lights up. Her dyspraxia, I think, is crippling. She can appear disinterested and vague but is just waiting for someone to tell her what to do. She might, for example, just stand and stare at the ceiling, but if someone says "come and play with this train" she springs into action with a massive smile. She just can't initiate doing anything by herself. My upset about the party, I think, is more about other people's perception of her, that she doesn't think or feel or have awareness or want to be included. That she is just a spare part.

And that is why I'm pondering whether I should be more educational in my approach. There is another child at the school who has physical disabilities caused by a particular syndrome. When she started, her mother sent all the parents at the school a bunch of information, saying she knew it was sometimes difficult for people to ask questions but this is why her child is like she is and feel free to approach her. I had never considered just laying it all out like that. Maybe I should have. I haven't been secretive about it. Just never considered that approach. But also, I suppose, we are still on a massive learning curve so we haven't always really known what was going on ourselves.

Note taken. Will arrange a day to play. We have had the party child over to play before. It's tricky because all of my children are very similar ages, so anyone who comes over tends to be monopolised by the other two.

Her 1:1 at school says her friendships might be starting to emerge at school anyway. Apparently there was recently a kiss with a boy on the mat!

Even the party bag thing isn't necessarily malicious. She miscounted, or someone else maybe came without rsvp-ing. But of all the children there, she thought that mine wouldn't notice or miss the bag, so chose my child to be the one who went without.

Either way, I went into the kitchen and stole a piece of cake and two stickers out of the prize bowl.

If you replied that your daughter was coming she should have had a party bag. Don't make excuses for her. She was thoughtless and cruel.

Univiting on the door is the lowest of low... I would not give such people a second look, if I ever miscounted etc I would make my son go without and make sure all the guests were given a party bag and explain to my son !! People these days are incredibly bitchy, so what if u stayed at the party??

This may sound melodramatic but my friend had a party for her son at school a few weeks back. The class teacher miscounted the students stupidly and two girls went without a party bag. My friend was so upset and felt so bad she went out and bought them two and gave it to them a few days later!!

As the mother of a 7 year old girl with ASD who can't understand why her big sister goes to loads of parties and she never does, something about the lack of party bag particularly gives me a lump in my throat. It's as if our children have to be grateful for any crumbs of social acknowledgement they're included in. The lack of party goodies would also suggest to me that my daughter is considered "less than a normal child" and therefore it doesn't matter.

Sorry op but your friend was very rude! I think an answer along the lines of " I used to be ignorant of unseen physical disabilities - but the more I mix with people I can see how they can have very happy fulfilling lives given the right support, after all it would be a tragedy to go back to the days when they were outcasts' smile sweetly but with the i'm quite touchy about this subject look in your eye.The aim being you want people to think - watch what you say around X!. Also it highlights their lack of manners and their ignorance.

There is no excuse for the party bag, if she was one short, she could have made up another and brought it into school another day. She sounds awful. I am so sorry that you have had the misfortune to meet so many awful people

Oh I know. I just can't keep wallowing about the bag but it was an issue for me. I had loads of spare bags at our last party, in case children brought siblings or people came unexpectedly. I would never consider someone going without. And if it were my house and I had run out of bags I would put together a makeshift one in a hurry. But I actually asked for my child's when one didn't materialise and we were leaving. The mother did apologise, said she had given the last one away but then didn't try to give us some cake or something anyway, which is when I went and helped myself. So yes, there is a definite implication that my child wouldn't care and so is "less".

Either way, I had a friendly chat with the party mother at school this week about nothing in particular and said we'd had a lovely time. So am no longer harbouring any hurt feelings and hopefully more prepared for next time something like this happens.