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.

Hi, my DD has GDD: good gross motor skills but very delayed with everything else, particularly speech. She has slightly dysmorphic features but testing drew a blank. How do you know whether your child has MLD or SLD, does anyone know? We still keep getting told, 'she's very young and who knows how she'll develop...'

With my daughter she started out as MLD and then moved up to SLD at about 5.

We use Curity Sleep Pants (a pull up style) size large which cover the bigger child/youth sizes ( order in) and seem less leaky than drynights and cheaper than Tena. Our HA also will not give NHS nappies for night only use or pull up style- although we were eventually approved for 2 traditional style a day ( ds needed changing in the night due to leakage)- we never got any though! We used a night alarm and ds has almost got it now! Took a while to get ds used to the idea of wearing it. After years of up in the night every night we now have some sleep throughs!! Ds has language now but I can see now that I started trying to toilet train him (at 3 nonverbal then) far too soon for him to get it. We also started by popping him on the loo for as long as possible whilst the bath ran at night. Fortunately he liked chocolate buttons and baths as reinforcers!

Arabica, I think part of the problem is that the tests that show developmental age/progress (Griffiths et al) are notoriously innacurate for young children. So they will hedge with a "GDD" diagnosis until I guess 4 or 5 when the tests get a bit more meaningful and also you can look back and see what the rate of developmental progress has been and project forward from that. DD1 has remained pretty much static since about 14m, which is fairly significant. The other thing is that a diagnosis makes it a lot easier of course and that may come with time too.

Re: HA and night nappies rules - I believe some people have been told this in the past, argued with them and eventually won; probably it's a question of getting more and more "professional" people to chip in (school nurse, community nurse, get your paed to write a letter, etc) till they give up. The NHS does have a bit of a habit of only listening to other bits of the NHS ime.

On the topic of an SLD diagnosis, as DD is so young she has not officially received this...yet. She will be assessed by a psycologist before she starts school, so an appropriate place can be found. However, I know myself, based on her AS diagnosis it is likely she will have severe / profound LD. Also, most of her her classmates have down syndrome, so likely MLD and they run absolute rings around her. They all get on great though and I think she learns so much from being around them

ds is almost 4 with GDd he is stuck at around the 18 month level physically and mentally atm and there still sitting on the fence about him as he already carries a few labels ther enot sure if mld or sld but we are due back to see specialists any time soon

As for nappies there is nothing here untill they then been told have to phone specialist health vistors but not till the day like hes going become dry in 5 weeks
he has no undertsanding or caring of potty training you can not even get him to sit on a loo

The toiletting is difficult - the health professionals had a go at me, but I'd have to lift her onto the loo or commode -and she's nearly 7, unable to stand or walk and so heavy, and shows no inclination to tell me she's weeing or pooing. Anyway she mostly poos in the night. I gave up and she wears pads (they don't like to call them nappies round here for some reason) all the time, gets skin infections down there...

HI all. My ds is 4. He has a brain injury which has caused a general delay in his development amongst other things.
He had an evaluation over a year ago that described him as "severe".
He has improved tremendously, a recent evaluation placed his language as severely delayed, but much improvement in other areas.

However everything he learns takes a lot of effort and time, endless repetition. Does this mean he has a SLD? I wish I knew exactly were he belongs.

On the toilet training front, we only recently managed to toilet train him during the day(after 10 long months). He is tall and the night time nappies have started to leak. I cannot find any nappies suitable for him. Does anyone know if I can buy larger nappies online? I am going to wait a couple of years before night training, not looking forward to that at all.

I am very interested in talking about behaviour management and motivation to learn. It is the most difficult part of parenting my DS.

You can buy Tena and Attends and other brands of nappies/pads in child sizes (xxs, sx, s, sixe 7, 9)on line but they are much costlier ( roughly £1 each) than size 6 in the shops. Therefore if you can get the disability team/ continence team to provide nhs pads its worth pursuing!

how do all you reorder themjust wondering as ds will be entitled in few weeks and thinking 3 a day not going to go anywhere

We have an Incontinence Nurse who you are referred to by Health Visitor, who does assessment of childs needs then places order. We have to pick them up from a health Centre (and not our closest one, grrr) once a month. Every now and again they forget to order them!! I give the boxes to a friend who keeps chicks in them.

Coming over from another thread....do you find it easy or hard to meet other parents with SLD children? I've found the school to be a really difficult place to meet with parents - hardly anyone comes to the very occasional coffee mornings, there's no support groups either in the school or in the city, (only ASD for MLD and more able) and the annual school disco is too loud for anyone to speak!! Have a lovely group of friends through a new-ish parent support group but it's been a fuck of a long time coming and all their kids are younger.

How do you meet other families with SLD - or any SN - kids?

i struggle to,there is alocal sn support group that I go to but the other children are asd or physical diffcultties and coping in ms so I do tend to find myselfmore isolated ,There is a parents support group in the town closes tome but its at 7pm and can ont get babysitter toget their either

for me the internet has been a lifeline and paticular all of you on the sn section

I have met some through school but it's hard. The nas support group is 99% of the time attended by parents of as/hfa kids so not really relevant at best / pretty depressing at worst. The local trust for Id's only eorkseith adults. I have met most of my friends going through the same online!

Of god sorry am on iPod the local trust for lds only deals with adults!

I too have found it difficult and very isolating. I have started to get to know a couple of parents at ds school but it is difficult with the distances involved. I belong to a local ADHD/ASD support group but our issues are so different (LD and delays are not shared with others in the group)- especially in the early days when ds was in ms and frankly it was disasterous! In fact I feel out of place in every support group. Perhaps thats why the toileting issues have been so taxing - there really is no one else struggling with this issue and its not something others can help with! Ds now goes to a sn Sat club ( only once a term though) and I am getting to know a few others.

Yes I think so. Actually it was when ds was younger ( under 7 - when ds had no Dx -before I joined MN!)I most needed the support so perhaps a group for SLD/GDD would be a thought! Personally I would have liked advice and support from others slightly further along the line ie where to buy things I needed ( ie swim nappies), about DLA , sn play areas, - as well as from those facing similar issues! Good luck!

What i meant was before I or anyone else realised ds had SLD and was going to suddenly catch up as is ofen implied by GDD!

I mean NOT going to catch up!

magso, don't worry we understood you.

Do you really think GDD implies the child will catch up? That is interesting. I always say to people DS has GDD but I have never expected him to suddenly catch-up.

My DS is still young so until now I have made friends with parents of NT kids, but as the differences are showing more and more it is getting much more difficult to fit in.

Oh no - although I stayed open minded- but it was implied by others that he might! In fact I heard 'he'll catch up' quite a lot! I think being overly optomistic delays acceptance and provision of support.