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SN children

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Original poster

can I ask about the word "mild" and how it affects you

57 replies

saint2shoes · 25/09/2008 21:34

due to the dreadful murder that was in the news. I have been thinking about this a bit.
and I thought I would ask..

when you have a child that is dxed with a mild disability(say mild cp for instance) do you find you slip through the sn net, because of it being "mild"?
sorry if I sound nosey, but I don't know much about "mild" disability and am interested.

OP posts:

vjg13 · 26/09/2008 15:06

I agree, but don't feel it's right that children with more articulate parents get a better deal. All this 'every child counts' stuff is total BS IMHO.

jimjamshaslefttheyurt · 26/09/2008 15:22

Oh it's not right. And I've tried to argue on behalf of other children as well - and have been told I'm not allowed to discuss them.

It's an apathy in the system- so you need to push it and cajole it and really force it along. If you don't or can't do that then your child will miss out.

dustystar · 26/09/2008 15:30

What i think is really sad is that even though I am lucky enough to have quite a good knowledge of the law surrounding education etc and have a Mum who is a SENCO and can help me out with lots of stuff, some of the best advice and information I have got from the SN board on here.

Not one of the professionals that I dealt with told me about the importance of the wording in statements or which parts were the legally binding ones; no-one told me about DLA or CA; no-one told me about IPSEA or where to get help and advice. All that sort of help I got from other parents n the SN board and as grateful as I am it makes me angry that this information and support is not being offered by the professionals involved with assessments etc.

PrimroseHall · 26/09/2008 15:34

Initially DS didn't slip through the net. He was DX'd pretty quickly and we got a fair amount of help. Then his Paed. switched areas and the new one felt that DS was 'too able' for his DX of ASD and that he was 'just a bit odd'.

He's 6.8 now and it's like trying to shove a sqaure peg into a round hole. He's aware enough to know that he's different, but he doesn't know how to be normal. You have to watch him closely to see what he gets wrong and so he gets missed. There's a child in his class with behavioural problems and he possibly also has ASD, and DS always gets compared to him. As if being the second least able in the class should bring me some comfort. He's still miles behind everyone else, excluding this one child, and he's lonely and miserable.

I've all but given up trying to access help for him. When I tell his teachers that he's unhappy they try to promote strategies that would work for NT children. I'm stuck somewhere between being grateful that they are trying to help at all and being incredibly frustrated knowing that it won't work.

amber32002 · 26/09/2008 16:57

Mild? Yup, what it normally means is "how it looks in terms of appearance or behaviour". It often bears no relation at all to the life-experience of the person with the disability.

In theory I have "mild" Asperger syndrome, because I can walk, talk, look normal, behave like an ordinary person for a certain amount of time. So, most people like me get no help, no support, no advice, no protection...and so often end up stressed to a point of not coping, trashing relationships, having no jobs, living in poverty, addicted to drugs or alcohol or self-farm as ways of coping - all because it's invisible and therefore people incorrectly think it's mild.

amber32002 · 26/09/2008 16:58

*self-harm! (oops, must check for spellys...)

sphil · 26/09/2008 20:35

DS2 was informally described as 'mild' by the professionals who saw him when he was 3-ish, though we've never had an 'official' description of where he is on the spectrum. We thought so too. It was all based on the fact that he has very few behavioural difficulties, is pretty flexible, obedient and doesn't have any really rigid routines or obsessions. It took me a long, long time to come to terms with the fact that all this (while admittedly making our lives a hell of a lot easier) doesn't make him 'mildly autistic': he has severe delays in language, social and play skills which impact hugely on his life and probably will always do so. And at times the fact that he IS mild in terms of his behaviour is a disadvantage - it is very very easy to just let him be. We're as guilty of this at times as the school.

There's a boy in the year above him at school who was similar to DS2 in terms of ability two years ago, but who had huge behaviour issues when he started. As a result they've put in tons of strategies to help him, most of them behavioural (rewards, incentives etc). His behaviour has improved a great deal but his language and cognitive skills have absolutely gone through the roof. Whereas DS2 isn't seen as needing that kind of intervention because he's 'good'. Makes me so frustrated!!

sphil · 26/09/2008 20:37

Not that I resent the help this other boy's been given btw - he's great, I know his Mum and it's lovely to see him blossom.

mumslife · 26/09/2008 20:38

This reply has been deleted

Message withdrawn at poster's request.

SixSpotBurnet · 26/09/2008 20:47

If I am describing DS1 nowadays I do tend to say he has "mild" autism - he's 9 and he has managed so far in mainstream without a statement and I think that describing his condition as "mild" is fair enough now.

HOWEVER he was actually far more of a worry to us when he was aged 3 or 4 than DS3 (who is non-verbal, still in nappies and would be regarded as having moderate to severe autism) is, because of his behaviour around other children - DS1 would lash out, hit, kick or bite, DS3 has never done anything like that - if another child gets in DS3's way he just waits for them to move!

In answer to 2shoes' question - I can see how (in the context of autism) a "mild" disability could nonetheless drive a parent to despair.

SixSpotBurnet · 26/09/2008 20:48

And I should add it has never been a problem getting the professionals to take DS3 seriously - whereas it really was with DS1 (and he almost got excluded from nursery to boot).

mehgalegs · 26/09/2008 20:53

We have quietly slipped from mild into moderate recently and the word disorder is bandied about more than delay too. Strangely I find it weirdly comforting, especially when people meet my very loud and bubbly three year old, it's not quite a dx but it seems to help knowing the his problems are actually quite serious (weirdy aren't I, not sure if I am getting this across all that well.)

SixSpotBurnet · 26/09/2008 20:56

No, I know where you're coming from on that one, mehgalegs . Not weirdy to me.

mehgalegs · 26/09/2008 21:03

Thank you sixspot .

SixSpotBurnet · 26/09/2008 21:06

Oh, I love your photos! I've never got around to doing anything about mine . Your music tastes resonate with me as well!

mehgalegs · 26/09/2008 21:09

SaintPeachy · 26/09/2008 21:33

Sixspot- I take it you have a 1 and 3 with asd then? Like me. How does your dc2 cope?

SixSpotBurnet · 26/09/2008 21:43

Hi Peachy - yes, I think you have commented before on us being somewhat similar to you (I used to post as Dinosaur, you might remember me by that name).

SixSpotBurnet · 26/09/2008 21:43

Sorry - didn't answer your question!

He copes magnificently but I worry about him (a) putting up with too much shit from DS1 and (b) adopting too much of a "carer" role for DS3.

SaintPeachy · 26/09/2008 21:44

Ah I see! Dio- that makes sense

Widemouthfrog · 26/09/2008 21:50

I hate the word 'mild'. My ds has AS, and is very high functioning. However the impact his difficulties have on his life and that of his family is far from mild. His own awareness of his difference is associated with high levels of stress and anxiety. I think 'mild' does an injustice to what many people with disabilities have to deal with on a daily basis. DS is such a brave boy every day of his life just to cope with what his peers do naturally.

madmouse · 26/09/2008 21:59

very interesting thread

especially as I am hoping for the 'mild' label for my ds.

good to know that there are drawbacks to, forewarned is forearmed. and I am a pushy mummy

aeao · 26/09/2008 22:11

I know mild isn't the right word, but I think Very High Functioning AS for Flamechick still sounds wrong.

Most of the time I just go with "she is her".

She can be the most loving caring child in the world.... who sobs her heart out because they change the layout of her words for school. She will be so kind and caring to her brother, but must always ask if her breakfast/dinner/apple is the biggest/has the most sugar etc.

She doesn't slot in with some AS things. She doesn't slot in with many NT things. She is just my little girl.

SixSpotBurnet · 26/09/2008 22:37

amber, what you say is exactly the sort of thing that makes me worry about DS1...

cyberseraphim · 27/09/2008 10:24

We didn't really get any indication of 'mild' or 'severe' or 'anything' at the time of DX. It's still hard to say now as you don't really know what you are measuring against. One of the therapists at the hospital said that passive autism (which DS1 seems to have) can be more challenging to work with than aggressive 'lashing out' autism. Yesterday though he got angry when the therapist changed the rules of a game and this was seen as a good sign !

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