Hello to those with an SLD child

[donkeyderby]

I've been posting on here a while but not sure how many of you have children, like mine, with SLD but not classically ASD.

DS1 is 13 and has no diagnosis - his facial features suggest a 'syndrome' - but has quite autistic behaviours and high care needs. Mobility is poor (needs a wheelchair at times), doubly incontinent, some challenging behaviours. Otherwise, he's the life and soul of the party, very loud - he suddenly started speaking aged 7 - and loves music. He is far worse at home behaviour-wise. It has often been said that he is very Angelman-like but no diagnosis so far.

It would be good to know about your kids and swap advice on all sorts of things like toilet training, behaviour management, just why do they behave the way they do?, experience of special schools etc. etc. Should have introduced myself a bit better a long time ago but felt a bit 'flamed' on one of my postings so withdrew from anything too personal (except after wine!)

BTW It's nice to find such a busy board - there seemed to be no place to talk to other parents when DS was young.

I am pleased the NAS is listening to you amber and adjusting the way they do things. But do you know if they are consulting parents of SLD kids?

Maybe severe ASD kids are more likely to have their educational needs met [ducks]? Here we have two ASD/SLD units within local SLD schools and the staffing is 1:1/1:2.

Outside of school - i.e. the rest of their lives - it is a different matter! The NAS should must have zero aspirations for SLD children if they think their needs are being met, 'albeit imperfectly'. Who the hell have they asked to come to this conclusion?!!

Yes it's the same here donkey. I think that's fair.

"more likely to have their basic needs met" ...than children with Asperger syndrome.

More likely to have some of the basics, rather than him saying "all their needs are being met".

Important difference, I'd say. He's pretty new to this job and wants to learn and make a difference. I'd say write to him and explain what's what.

Are they consulting with those with SLD and with their parents/carers? I bloomin' well hope so.

amber, can you direct me to his actual report or wherever it was he made his comments? I have looked on the website and can't find a reference. Many thanks

Was at a conference recently, so spoken commentary rather than written down

Incidentally, I don't feel like my basic needs have been met today, having been on the receiving end of a relentless attack of hairpulling, scratching, pinching, spitting and general violence. I'm fuming and sad, and it's only Monday with the whole of half term to go. Our family life isn't unusual among the SLD community and the basic need for a decent family life is not being met at all. I still cannot think why this man has said this, whether it's 'some' or all of the basics [glugs back wine].

You're right amber. I haven't renewed my membership (debated long and hard with myself) and I think I should write and say why.

I was wondering who to write to- sounds like he might be the man (although will it reach him I wonder?)

My experience is that he's very 'hands on' and can and does answer personally whenever he can, so I'd say go for it. I do.

Donkeyderby, I think the wine is definitely called for (having survived a day on public transport which is as un-ASD-friendly as can be imaginable and having spent much of it asleep through exhausted shutdown as a result). (but they did tell me that I could get the safety instructions in braille if I needed them, and there was a wheelchair ramp available )

Fio, yes we get dp's and respite - but then it is absolutely necessary for my families survival and only gained after crisis point reached repeatedly. It is just the lack of much to do while on half term and just one of those days without help where ds was 'in the zone' and siblings to be catered for too but missing out. All is better now (I'm at home alone!!)

A centre is exactly what is needed. What a shame yours isn't catering for SLD. Can you approach them to let them know of the need? Or just turn up there and let them deal with your family?!