To think things said to SEN parents can be horrific

[summernight]

What's the worst you've had said to you?

Yesterday, after a school event, that ds (8 - HFA) was involved in with the class and the teacher said to me 'it was great, he looked just all the other children during the event. At the end of the day, all us parents want is for our children to look normal' (soooo....he doesn't look normal the rest of the time). Sad thing is, I smiled and didn't say anything.

I’ve had quite a few...

Telling my MIL very early on when we had been told something wasn’t right her reply “Oh no! After all the lovely things you bought her”

Later also the MIL to my DD while on FaceTime “don’t worry, at least you are pretty”

Generally speaking the public were lovely until she hit an age where sssumptions are made about “naughty” behaviour instead of considering SN.

someone said to me my DS only appeared to be 'a bit autistic' lol

Just had an incident that was perfect for this thread. Ds has a genetic condition that can throw up a variety of issues, obviously some of these overlap with other conditions. I’m part of a FB group for parents of kids with this condition, it often accepts people dealing with the symptoms if not the condition. Yesterday someone joined because their adopted child has some of the symptoms. They genuinely posted asking how many of the problems were caused by prenatal drinking and drugs and how much ss involvement we all had. It was awful that I suspected a troll because she was so matter of fact about the fact that we had all caused the problems by drinking (it’s 100% genetic). She went on and on about needing more info to deal with her child. Was totally offensive.

My eldest has quite severe anxiety and panic issues at the moment. The number of people who can’t differentiate between her ‘safe’ things to do and the rest of everyday life is stupefying. Yes, she can sit with a few people for an hour in a music room practicing (on a very uncool instrument, with other equally uncool-instrument players). That’s a safe space. No, she can’t sit for five hours in one day in a core subject which she shares with somebody who has been verbally abusing her for 18 months. No, no it really isn’t just the same, and she most certainly isn’t just “picking and choosing” what makes her break.

Back into the fray this week. Something needs to give, and I have a sneaking suspicion it might be my temper unless I get some more sleep.

My son has Nystagmus, his eyes move from left to right all the time and he has no control over this. A teenager literally shouted out 'What the fuck is wrong with his eyes?'

The use of the word retard or variations of it like fucktard or leftard - leaves me cold

I have had that @FlashingBeacon ds had a rare chromosome disorder they can be inherited or in ds case happen randomley its basically a genetic error that occurs on conceprtion ie ie no ones fault , but again someone in the facebook group put it down to their adoptive childs birth mother using drink and drugs Someone with the dosprder can be affected mildly or severly or somewhere in between but someone else in the group kept banging on about how most people were not affected (no one really knows how many people are affected by it as testing is fairly recent) i had to come out of the group in the end as it didnt feel supportive

@AamdC that actually makes me feel better. I found out I was pregnant late, and have lingering guilt over it. Ds condition was nothing to do with that, 2 recessive genes and all that.
Maybe it is a common troll because sounds the same. There was also the not so subtle implication that our lives were chaotic. Normally I have such admiration for people who adopt but I really don’t feel this woman is well suited to creating a supportive environment.

My DD's best friend has SEN. One day they were playing at my house when a child-free friend dropped in.

Over coffee my child-free friend said "See, that's in part why I don't want children. What about if it turns out like that thing?" pointing out of the window at my DD's best friend.

We're not really friends any more.

My mother was fairly supportive of DS's SEN until he started secondary. Now it appears that she believes he should have grown out of it the moment he grew taller than me!

"I think where you've gone wrong is talking to him like he's an adult instead of just punishing him for all this. If he carries on like this someone will punch him in a pub one day, and he'll have no bloody idea why. And you can't blame them really, can you? I mean they don't know what he's like so he needs to sort himself out to avoid stuff like that! "

That's the latest gem. And now she can't understand why I refusing to speak to her or let her see my DC! It really hurts when it's his own grandmother saying this shit, but then given how she treated us as teenagers I probably shouldn't be surprised.

My DD has severe conductive hearing loss and it’s not what people say it’s the fact that so many people don’t see it as a disability. Everyday is a struggle for her and people just expect her to get on with it. She comes home everyday knackered from all the concentration her condition requires in order for her to keep up in an often noisy unruly classroom.

She often gets scolded for not hearing or mishearing things and if she gets upset they remind her she had hearing aids! My heart breaks for her sometimes. Her primary education has been such a struggle from diagnosis to getting and keeping support.

And for the record, DS is a perfectly lovely young lad who gets constant praise from teachers, has friends, is kind and thoughtful and other than being a bit grumpy (but not rude) occasionally is a delight. He just fidgets at the dinner table (ADHD), struggles to meet exacting standards of cutlery use due to dyspraxia (manners better than 90% of other diners out there) and the real killer is he tries to join in adult conversation and discuss politics because he's interested in it 🙄

About DS1 - first assessment for ASD
‘all of this is probably because he is insufficiently attached to you’
Me ‘actually he is very attached to me’
Them ‘then it’s probably because he’s too attached to you’
We got a second opinion, funnily enough he does have ASD!

Quite possibly a troll @Flashingbeacon i think its quite normal to have a lingering guilt i know i have it but as ds paediateicuan said its just the way hes made which made me feel better!

The worst is people assuming that child with autism have some sort of magical talent because they've seen Rain man.

Rainman has a lot to answer for.

My brother was in a wheelchair, severe autism and CP. Some bloke asked me one if “It” understood what he was saying

”he can't have autism, he obviously loves his sister, if he was autistic be couldn't" - a gp

Related to a comment above. I was (justifiably) concerned dd had ASD. I was refused at panel to continue down the ASD pathway, instead the community pediatrician saw me at school. He said dd could draw brilliant circles at 6yo and had good eye contact. He ‘diagnosed’ sibling rivalry

Dd was diagnosed about a year later with ASD after trying to self hsrm with a knife. 3 years on, I’m still mad!

DD has selective mutism. I've had people tell me that it doesn't exist.

Where to start! Ds has to wear a Lycra body suit and glove. The amount of people who think it’s acceptable to comment including “oh how did he burn himself” to “that can’t be comfy” “ooh that’s funny looking” (all comments from ‘professionals’) because getting an 8 year old to wear it and not feel conscious isn’t difficult enough is it!

Roomba My mother constantly points out to me how DD didn't have the same difficulties when she was childminding her. She's 14 now, she was 18 months then 😕.

Add to that, as a single parent and currently FT carer, the professionals seeing how much I will jump on applying for free stuff and funds.

Roomba - your DS sounds like someone my DS would get along with brilliantly (same for the rest of DS's posse for that matter).

teacher sounds like a prick, I can kinda get what they meant, your DS joined in well and didn't seem phased by it, which is fantastic, but all us parents want is for our children to look normal no, fuck off is it, all us parents want is for our children to be happy! I work with children with autism in mainstream, it really annoys me how some teachers talk about children with SEN.