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.

"Is it the NAS?"

Dear god no. The words chocolate teapot spring to mind

Other parents are the gospel. I have learned 99% of the useful info I know from other parents.

Not sure where you are, but I'm doing research into the ways in which children with severe autism and learning disabilities interact. Am always happy to talk about that (for free). I want the work, which is pretty academic at the moment, to be useful to parents/carers/teachers in some way (otherwise what's the point?)

I think the group sounds good - I would attend something like that. We have monthly talks at DDs preschool. Although the kids are younger than your target group, some of the talks I found very useful were one from a dental hygenist (special tooth brushes, diet etc.) and a nutritionist / dietician (who also went though special cups / straws, cutlery etc.)

ooh yes those would be useful. Ones on sensory integration too would be helpful.

Hi DD, have lost your email (deleted a few by mistake the other week...) but mine is bergmann dot grainger at btinternet dotcom. Where I live we have a families information/support group run by professionals with guest speaker every month. Because the group is organised for, rather than by, parents, it doesn't really challenge any of the professionals who turn up (until three wicked parent minxes started an Independent forum). Recent topics: short breaks (respite); bedwetting/continence services; claiming DLA and other benefits; transport; play facilities. Parent partnership also arranged a conference on 'change' all about educational transitions, eg nursery to primary, with guests from a range of services and some specialist teachers. Really useful, best thing being meeting other parents to tell you what it's really like to fight battles over school!

emailing you now Arabica.

Saintly, I'm on the South coast, in the South East. Your subject matter sounds great.

oh well if you set something up and are short of a speaker give me a shout. I have plenty of people I can stay with/visit in the SE.

I do think its a great idea to set up a group.

it does theres nothing like that here and since ds only has asd traits lotof the courses here are only forthose on asd spectrum not ld

Is the NAS a 'chocolate teapot' for just kids with severe autism? I've heard other parents on here sing it's praises. On a couple of other forums, there have been complaints about the NAS chucking young ASD/SLD adults out of their day centres because they were too difficult. My ds has a - questionable - ASD diagnosis but the local autistic society said he couldn't attend their clubs because he has SLD. Maybe they are yet another organisation that won't deal with people deemed too disabled?

Well that's my view, and that of the majority of parents I've met whose kids have severe autism.

I don't know, I did ask why there were no NAS run courses provided locally (nationally I'm not sure) that are suitable for parents of kids at the severe end of the spectrum and was told the guy putting the courses together thinks that those who have severely affected kids need less support than those dealing with the higher functioning end of the spectrum. (I wasn't asking for courses to be replaced, just additional ones for the likes of us).

My son is not allowed to attend the local NAS out of school club as he is too severe.

Wow, that's shocking. It sounds like the NAS needs a rocket up their arse to influence their local groups to do something about this situation. The problem is that so many parents with severely autistic children are just surviving - or not - and don't have the time, energy or money to influence anything.

Well exactly. And often can't access the events organised anyway.

they would notlet me or ds attend anything as we have no dx just asd traits and his ld to severe even though he does not have severe challenging behaviour .

Infact think there is lotless access to courses help with Ld

I'd agree with Pheonix - the NAS is pretty unusual in providing anything at all. If your child doesn't have ASD, it's Hobson's choice. I agree though that NAS should be for everyone with ASD, or what's the point in claiming to support a "spectrum" condition? Otherwise it will soon be "HFA without behavioural issues" and then "HFA without behavioural issues but with sensory issues" and then "HFA children who happen to have exactly the same profile as the kids of the people on the committee"

DD1's school is in the process of opening a separate SLD/ASD stream so there is some "official" recognition that need isn't being met. Nothing whatsoever extracurricular or supporting the families.

One of the main stumbling blocks must be that SLD kids are expensive to cater for because so many need a 1:1 to access anything. Why on earth is there not statutory funding for afterschool and playschemes for children requiring anything more than a 1:8 ratio and specialist childcare/play and leisure groups available to all children? DS goes to one such inclusive scheme - a charity started by parents - but he can only get a max of 1 or 2 sessions a week compared to 5 for mainstream kids, just because there is too much demand for SN places and not enough money. At least it is there for us - I know others are not so lucky.

Does anyone know of any national campaigning organisations that specifically represent SLD? I know the challenging behaviour foundation is there but I'm not sure how much they influence government thinking.

yep i am fully expecting that any club that ds will want to go towhen he is older i shall have to go too, mind sofar 3 wont have him on their waitinglist.Am muttering very loudly to them about discrimantion

Mencap?? But not specifically sld I guess. Completely agree with you about the 1:1 issue. That is such an important campaign. Ds1 loves going to schemes - but access to the one suitable one is so limited.

I know quite a few people who now call the nas the national asperger's society.

mencap only deal with adults here

Same here phoenix but I think they represent children nationally iyswim

Same here phoenix but I think they represent children nationally iyswim

Mencap here for adults only. I don't know of any work that Mencap does that specifically addresses the needs of SLD children apart maybe from their 'Breaking Point' campaign which I think influenced Aiming High (could be wrong). Filtered down to local level, AH doesn't necessarily represent us - our AH wants to focus on MLD.

A lot of organisations seem to use the most able disabled adults and children on their committees as a nod to user power. IMO they can no more represent our children's experiences than NT's. It's a bit like using Bengali British people to provide a voice for the Vietnamese community here. There will be things in common but a lot of differences too.

DS has been 'consulted' in an Ofsted inspection of his respite home. If you ask DS whether he likes shit or sugar, he'll say sugar because it's the last word you say. Pointless. They need to ask us, our kids real voice.

'National Aspergers Society' - I don't know whether to laugh or cry! Send this thread to the bastards someone!

dont know epasked ds at preschool what he liked about it senco had to remind her erm one he cant understand it and 2 cant answer you anyway

agree donkey about the lack of voice. Did see on another thread here yesterday the the chief exec of the nas said last week that their research showed that those most profoundly affected are having their needs met. And it's the other end of the spectrum that needs support. Which explains their strategy but indicates that they really have no clue about those who are severely affected. I can only think their research came from their own members- those with severely affected kids have left in droves judging by conversations I've had.
Oh I met someone very involved with the nas once and I really want to say what was said in the conversation but I can't on a public forum!!

im am my sons voice litterally ,he does notfit critera for nas,mencap does not evengive advice for children locally and will talk to them nationally .Surestart programs here are non existant specialist hv is load of crap and the sn group go to ds just does not fit in his needs are so differnt to the others and do not mean that as a slur against them or anyone its just a fact. .

.To be honest the best support help,advice been given has come from here .

....are more likely to have their basic needs met from the research they did, but imperfectly....to give a fuller idea of what he actually said. He did make it clear that there was much more to be done.

From my point of view, it isn't the National Asperger Society. Every time I have tried to access an event for adults with an ASD that is run by/in conjunction with the NAS, I've left exhausted and scared witless... because there has been zero understanding of my own fairly standard Asperger syndrome needs (needs that are known by the organisers in advance). There again, that has been the experience in other ASD charities too, not just the NAS.

I'm working with them to try to help them understand that putting us into a noisy, chaotic, echoing environment with no notification that it'd be like that, and with crowds of jostling people, for an unexpected social gathering to 'network' with each other is not actually very good for us. We need a quiet space somewhere to retreat to, and to know where the big danger zones are for us. It can push us into some pretty dangerous overload situations. Especially if I have to try to drive home after one. I'd rather not have to be collected by a helper because I haven't coped.

When I was talking with one of their senior people a while ago, I'd chosen a quiet spot with no distractions and just that one person to talk to, because that's what I can manage. And lo and behold, it got turned into a big group discussion and I couldn't then participate properly. Can't switch attention between people effectively, can't work out how to join in a group discussion, just get more and more stressed out.

So no, it's not really the National Asperger society either. But they are very willing to apologise when they've got it wrong, I found. I suspect good things will come out of it in this next year or two.