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.

My visually impaired so hasn't even started school yet (he'll start reception in September 2019) and I've already had a few "Will he be going to school with normal children?" It's called a mainstream school you twat bag! Maybe you need to return to education to learn not to be a horrendous cunt!

Rainbow I’m at the point where happy seems like some pipe dream. In fact, I’m not ashamed to use his frames of reference here and say I’d quite like my son to be a Pokemon. It’s all he talks about. He’d be happy enough too, as he’d have 600+ other Pokemon to be pixelated with, and a nice pokeball to retreat to when the world pisses him off and he can’t cope. It actually sounds reasonably doable. I may need more gin...

DC is now grown up but some of the things which were said or done at school upset me to this day. Primary school and LEA were unwilling to assess despite daily ongoing difficulties from Reception. Eventually and grudgingly at the end of Y3 the LEA sent someone out to assess, she confirmed the dyslexia which we had already had diagnosed privately, I asked what support would be offered. The answer was very little, she said we know children with dyslexia can find the classroom difficult to cope with but they just have to get used to it. At secondary school there were too many examples to list but this incident stands out, DC was statemented by this time and going through a phase of school refusal, dyspraxia had also been diagnosed. PE was understandably the worst lesson for him to join in. One day I had persuaded him to go to school by mid morning and drove him there (16 mile round trip), part way there he realised he had left his PE kit, it would have made him even later for school missing the start of the 11 o'clock lesson so we didn't go back for it. In the PE lesson later on he helped set out the equipment and took part, all be it without his kit. At the end of the lesson the teacher awarded a merit mark to every pupil in the class apart from DC because he hadn't got his kit. He was upset, it seemed so petty, a mark could have been given to recognise that he had made it into school that day and taken part. The school were well aware of the refusal which had begun after years of struggling without appropriate support. There was very little understanding of dyspraxia at that school.

Sadly there still is little understanding of dcd/dyspraxia

Please may I join? having the ‘title’ issue currently.

Thisisit777 just jump in, this has been a really supportive thread.

I actually planned on reading this thread so I don't accidentally say the wrong thing, but whilst I may stuff my foot in, I'm not a malicious arsehole so have never even thought these things have could possibly be acceptable.

Before DS got his ASD/ADHD diagnosis - I was picking DS up from his nursery one day and one of the workers in his nursery said to me

'I do feel for you with 'xx', it must be like having triplets at home' .

My friend who did have twins was very about this comment when I mentioned it to her, but I found it rather comforting as it acknowledged that DS was more than just your 'usual handful'.

My friend with twins kept saying that I must have it easier then she did as she had twins, thereby implying I was making a mountain out of a molehill when I talked about how hard I was finding DS .

Whilst I did agree with her, I still was struggling with DS much more than she seemed to be with her twins.

It was actually good to know that someone at the nursery, who had experience of a lot of children agreed that he was not easy to look after

On the whole though most comments about his SEN are quite hard to deal with.

One of the most memorable moments of being the parent of a child with an ASC was when our LA caseworker (formerly teacher, Senco and acting headteacher) stated that DS "couldn't possibly have any Learning Disabilities because his diagnosis was Asperger's Syndrome and therefore had an IQ of at least average", less than 6 months later DS was diagnosed with a much higher than average word recognition but also with 2 specific learning disabilities.

Same person also didn't know that an ASC is a PDD and had PDD recorded as a separate diagnosis (PDD does not appear on any paperwork pertaining to diagnosis), also denied knowing that DS has other medically diagnosed conditions despite knowing him at that point for 6 years and having previously written reports specifying the conditions, had meetings with Senior NHS Therapists who produced his therapy plan and was in receipt of equipment given to DS by the NHS all to aid him at school.

all us parents want is for our children to look normal

All I wanted for my DS was to be treated with respect not as a burden, to be educated in accordance with the law, to be included in everything where possible and to have reasonable adjustments made in accordance with the Equality Act.

Instead of that he suffered discrimination and victimisation.

for everyone.

Someone said to my sister about her son (who has autism, dyspraxia and GDD)
"But he looks so normal- you'd never know"

I know it's not exactly SEN issues, but about my daughter who has a genetic condition affecting her face, take your pick....

"You must have been devastated when you found out."
"What's up with her face?"
"She looks so much better after surgery."
"What did you do to cause it?" (During pregnancy!)

I hate people sometimes!

DH’s ex wife said our little boy ‘just needs a good slap’. Wrong on every single level, regardless of his disability, and tells me an awful lot about her parenting style.
We get a lot of the ‘you’d never know’, ‘you can’t tell by looking at him’, which I know people say as a reflex and think they are meaning well, but honestly.
Also comments like ‘we’re all on the spectrum’, or ‘oh yes, my DS does that too, perhaps he’s autistic’ are belittling and rude. I give people like this a very wide berth.

The whole ‘we’re all on the spectrum’ makes me want to slap people sideways tbh.
There’s a dickhead saying it on a FB group I’m on atm and is then saying it’s true as we all have traits. Makes me want to go on a rampage akin to Godzilla

Not SEN. But my eldest daughter has had very severe anorexia for 2 years (thankfully now in recovery). On the day she was admitted to hospital as an emergency because she had ceased eating entirely the mother of a friend told me that if it was her daughter she would just have “made her eat and wouldn’t have let it get this far”.

Some people really have not a clue. I acknowledge that there is an end in sight (hopefully) for us and that for many on this thread it will be a lifelong struggle to deal with thoughtless comments.

People are twats. We’re currently going through the assessment process with DS. He has executive function difficulties and behavioural issues - possible ASD but we think more likely ADHD. We’ve already had
“he can’t be autistic, he makes eye contact and talks well enough” 🙄

“He just needs a good smack” said by several people when they’ve seen him in a very hyper state/during a meltdown. I’d like to see them try that, he’d probably punch them right back.

“You’re too soft on him, he’s mollycoddled” nope, we have good boundaries, he doesn’t listen (no focus), doesn’t respond to standard rewards or time out and doesn’t care if we remove everything he owns.

“He hasn’t had enough cuddles or time with you”. he’s never off my knee when we’re at home, always wanting and getting cuddles, and we do a hell of a lot more things together than most of our family do with their kids.

“He’ll grow out of it”. No, if anything his issues are getting worse and more apparent the older he gets.

It’s exhausting enough, but having these people offer their batshit opinions makes it all the more tiring and frustrating.

Ipswitch witch
I totally agree with everything you say - especially the bit about boundaries. whatever you say my DS who is nearly 12 just doesn't listen. He is also so rude to me and dad but never to a teacher
I thought he would maybe get better as he matured but if anything his anxiety has worsened and he is more sure of his own mind. You certainly cant get him to do anything he doesn't want to He has elements of PDA and it seems as though he enjoys trying to control you.
I was once confronted by a grandparent telling me I was a disgrace of a parent and to keep Ds away from their GS. He stood in front of me in the street and wouldn't let me pass, ds went and hid down the road. It was really scary as he was inches from my face and really aggressive

Can I ask what is wrong with 'we're on the spectrum'? I thought autism was a spectrum?

tallulah it is. What I think the PP was referring to (as I've had the same comments from well meaning family..) is that you often get people saying "well, everyone's a little bit autistic / on the spectrum"

Its the same vein as people who say "I'm a bit OCD" to describe being organized

Ohhh I see. Thanks!

I’m on about NT people saying it.

I've had "she can't have autism, she's a girl" and "you don't agree she has it, do you?" "She's affectionate though" "she doesn't seem autistic to me" About my 4yo DD who has ASC. And lots of well meaning comments about how she'll catch up with xyz like she'll just grow out of it.

I get The Glare a lot - and tutting, and eye rolls.

I’ve had; ‘he doesn’t look autistic’, said encouragingly, like at least his disability is invisible and this should comfort me!

I've got dc with both invisible or invisible disabilities and tbh I find the visible disabilities easier to deal with for the most part. I find a lot of people think invisible means "not that bad" or a severe case of pfb. We've had a lot of "but he doesn't look autistic" too. I'm wondering what someone with autism is supposed to look like.

About a decade ago, there was quite a scandal at my Dsis’s SEN school - when it came out that when several of the teachers had been talking about the children, they were categorized as being either “wheelers” or “droolers”. So I’m sadly not shocked that PP have had such bad experiences with professionals.

I always got so cross when "professionals" never used my sons name just " him". Also being told ds didn't have any imagination, I don't know why but found this incredibly upsetting. Which turned out to be totally wrong, he has an amazing imagination.