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See all MNHQ comments on this thread

Original poster

Hey MNHQ. Would it be possible to have a discussion about how SN issues/threads are handled on the main boards. ( pt 2)

370 replies

Samcro · 26/06/2016 10:23

waves

OP posts:
Akire · 27/06/2016 22:30

2boys I don't think anyone is offended if you post a question using severe. Had someone said anything?

I know what mean s out how DR use language. I often get nurse or hos reports saying I'm can't communicate er no I can't speak I can communicate in lots of ways! I'm not in a coma unable to blink!

Akire · 27/06/2016 22:37

From what you say about your son he certainly has Extea needs so of course you are a SN parent or parent with child of additional needs/Disabled what ever phrase you feel most comfortable.

Not sure how or why someone would argue with you or that!

2boysnamedR · 27/06/2016 22:43

I think it's harder to talk honestly on here than it is to Sen parents IRL. For fear of upsetting people.
My son was seen by EP who couldn't or wouldn't state his LD. LD are ( my county schools) grouped on severity of need. So I was suprised that I offended saying he has severe ASD, severe LD, severe Lang disorder. He is not up in the asperges scale, he's down the other end of the spectrum. Never ever step foot into mainstream severe, never ever live a Independant life severe. I was told it was odd to refer to him as severe anything. To say he's never going to get into MS. But it's not odd IRL. No child in any of the SEN schools in county move on into MS. None, ever. Why is that so wrong to say? i would love it to be a possibility, I would do anything to see him get a GCSE, job wife etc but of all the hundreds before him it's just never happened.
So it's severe. I don't feel as a parent that I need yet more confusion making up a new terminology for clinical words.
Like Katie Price when Harvey was born. People said he was visually challenged. Katie said blind.
It just feels sometimes that anything can offend. Disabilty is another word. But why? "ASD isn't a disabilty " so what does the D stand for in his DLA payments? But that's another thing that gets people's backs up on here.

Original poster
Samcro · 27/06/2016 22:48

now I describe my dd as being severely disabled, once a well known poster got annoyed by that as her dd is more severely disabled!!
but I still use the term as what else can I say? its a easy way of saying it, rather than listing all her disability.
I get confused by the use of SEN as my ds was classed as SEN due to hearing loss. yet he is nt, so I don't use that term about my dd.

OP posts:
NeedACleverNN · 27/06/2016 22:51

That's not what you need Samcro really is it?

Having to live with a child who has severe ASD and then being told well actually my child is worse than yours so there!

You get enough abuse and misunderstanding from joe public. You don't need it from other parents who SHOULD understand a smidgen of what you going through on a daily basis

Akire · 27/06/2016 22:52

I'm suprised maybe that was one poster? It's not a compution like you say you just stating fact. So what if your child needs are not as high or much higher than someone else's idea of where line is?

I call myself Disabled it's proud term with history and battles and sense of identity. If anyone says I should call myself s person with Disabillites I may have run over their feet. I'm still "a person first" even if some parts of society fail see that

Akire · 27/06/2016 22:53

What's NT? Seen it few times can't work it out!

Original poster
Samcro · 27/06/2016 22:53

normal

OP posts:
Flouncy · 27/06/2016 22:54

Neurologically Typical

Original poster
Samcro · 27/06/2016 22:54

although calling my son normal is funny lol

OP posts:
NeedACleverNN · 27/06/2016 22:54

Also for what it's worth I class myself as NT.

I have a complete loss in my right ear and 70% loss in my left due to meningitis. Having to go to have a hearing test as I think I've had a decline due to an infection. Would be a shame as it has been steady for 10 years plus

However I did receive one to one support in primary school and not so much in secondary school but I was still given allowances during exams and GCSE's such as having a private room during a listening exam and someone there to repeat the question if I don't hear it. I rely heavily on lip reading. So in some way it is a SEN but I guess it depends on the person

2boysnamedR · 27/06/2016 22:58

That's what mean really samcro it's just a easy way to discribe needs. It's terminology used by school and NHS. Or I would need to list out all his quirks and you would have to put the pieces together to see where he sits on the ASD spectrum Grin which is a ball ache I can do without after some old random lady told me to give him him a good slap to "sort him out"

Both boys have educational needs ( dispite one good and one unknown IQ) so SEN is fine here.

Im never comparing my kids needs to other people's / posters. Sometimes I think " I couldn't handle that" and some people say the same to me. But you cope at level you know so that becomes irrelevant mostly I guess.

I am quite happy getting advice from a parent who's child is sitting GCSEs at mainstream with no EHCP. It's not that.
It's almost like words become disabalist. Like ASD has become ASC and then the safest thing is to not talk about disabilty. Even as a parent of a disabled / Sen child and that's a sad situation.

BishopBrennansArse · 27/06/2016 23:00

I consider my middle son to be severely autistic with a hefty dollop of ADHD. Because he's verbal others disagree. However his speech isn't often useful communication other than echolalia and he cannot express himself at all easily with associated meltdowns. He can't keep himself safe, us in special school and won't be independent.

Because others are more severe doesn't diminish his severity if that makes sense?

Akire · 27/06/2016 23:03

So would it mean having a disability that you compensate for so consider it not to count is that what you mean? Well I mean you cope and don't think of it as coping it's just life?

Flouncy · 27/06/2016 23:03

I tend to say autistic because people know what I mean and it doesn't seam to offend.

Original poster
Samcro · 27/06/2016 23:03

well my dd is now an adult
when she got her dx we were give a list of words...so CP and the kind and then added to that the name of the tendencies.
a couple of years ago all the names were changed....it was so confusing as after years os saying she had a certain type of CP they changed it. not the dx just what they call...confused?? so was I.

OP posts:
2boysnamedR · 27/06/2016 23:15

I try not to think that we aren't just a boringly normal family. The boys have needs, they get met, were happy it's all good as it's all we know. But thats a very thin vail that often gets broken as if your on the outside looking in, we are anything but...

My point really is that I don't like people dumbing things down to a PC level
Me " he can't talk" - A " at least he's happy"
Me " no one at this school grows up to be independent" A - " don't be defeatist"
Like I don't know this already, it's a point I personally passed way back.
I get that IRL too. But he's not going to be independent, he can't talk, he has severe needs. But you know what? That's OK. It's ok to be non verbal, it's ok to not sit exams, it ok to have ASD.
For me personally it's OK. So why does it need sexing up? At some point you have accept these unsettling truths but how when people keep dumbing needs down?

I guess this is just a general rant Wink

Akire · 27/06/2016 23:38

That does sound annoying 2boys good have places and people that let you just rant. Sometimes do have to say it how it is, thing the glass half full is when people don't know what to say so try be postive.

fanjoforthemammaries7850 · 28/06/2016 08:21

happiness is very important, mind you.

My DD has always been happily non verbal but now is getting increasingly less happy and more frustrated. Happy is a big deal.

Original poster
Samcro · 28/06/2016 08:23

yes happy is important, dd is happy and thats the main thing.

OP posts:
2boysnamedR · 28/06/2016 08:46

Happiness is very important. But all ds needs don't get negated down to zero just because he seems happy.
I think people don't know what to say, they feel awkward so say something positive. I get that. That doesn't irritate me too much.
It's the more "don't be negative, hes not to bad, they all talk by school, at least he's happy" then dealing with the "don't say severe" comments together which makes the "severe" thing worse. Like if I need to do is stay positive for him to lead anything like a normal life. It just makes me feel that no one gets it. Not even the other parents who's kids have ASD.

fanjoforthemammaries7850 · 28/06/2016 09:05

how old is he?

2boysnamedR · 28/06/2016 09:30

He's four and a half. Too late to just start talking now. Too late to be a Einstein

fanjoforthemammaries7850 · 28/06/2016 09:43

He may well still start talking. But even if not, communication is key, its at the root of all my DD's frustrations, so hopefully he will be able to keep communicating and stay happy :)

Original poster
Samcro · 28/06/2016 09:44

i think you misunderstood. a lot we can't change, but you get to the stage of thinking as long as they are happy.
it doesn't cure my dd's massive disability, she still can't walk talk, needs 24/7 care to meet all her needs.
but at least i know she is happy,

OP posts: