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

DS1 is diagnosed with severe autism and SLD's, but tbh his problems have far more in common with those with severe learning disabilities. He's 10 this week and non-verbal (although we have one word- Mummy and Daddy seems to be coming too). Also has many challenging behaviours -is toilet trained, although lost the night time training after having it sorted for many years. Why I don't know!

He attends an SLD/PMLD school.

Erm erm erm. Think this thread is a really good idea!

Hi
Like MrsT, I have a son (6) whose diagnosis is autism but his SLDs impact far more on his life. Good idea for a thread!

So glad you think it's a good idea for a thread! Great to hear from you.

I think I started it because of lurking on the 'poem' threads nervously and thinking how much I had in common with parents who are at the severe end of the disability chain who were trying to point out that it is hard to be positive all the time. I myself swing between cheerfulness and a sense of doom!

Will get back soon. School bus has just arrived!

"I myself swing between cheerfulness and a sense of doom!"

Oh yes- I think so much of this depends on outside factors that are no in our control. When my son is relaxed and accessing stuff with good support, it's easy to be cheerful. When the support is removed, or he's upset and I don't know why, or he can't go to things then I am

Great thread - my dd is nearly 3 so I probably will get more advice from the rest of you than I'll be able to give. She has angelmans syndrome. Non verbal, no babbling, just vowel sounds and the most wonderful laugh. She cannot walk yet but is cruising. She also has epilepsy which we are having a lot of problems with at the moment. She is a very happy little woman though and gives the best hugs

Yes, DD, good thread.

DD1 is five. She has a couple of unrelated rare conditions (I have said that so often now that I typed it without engaging my brain ) so she's pretty much unique. She attends a SLD/PMLD school. Her social/communication is pretty much absent, as is her play - learning to watch the telly is a recent huge step forward, but otherwise she just chews stuff. She is currently ignoring cbeebies and chewing the curtains. She has one, maybe two signs. (I say maybe because "yes" currently means "read my mind, and fetch me what I require, minion") and I'm not sure that actually counts as correct usage! She is hemiplegic but can potter around being a total danger to herself and others. Incontinent, sleep issues, feeding issues, severe Epilepsy etc. etc. The usual stuff. No real behaviour problems - yet. Well, intermittent self-harm, chewing radiators, that sort of thing. And will bite or pinch if provoked. But she's generally a very relaxed and good-natured child.

I've come to terms a bit more with her condition(s) now that she's slightly more social - may smile when she sees you, or put out her arms to be picked up, which is all impressive progress. So we have some sort of relationship now, something that makes it all a bit easier.

not really sure where my ds fits hes somewhere between mld and sld so kinda feel in no mans land but i to feel sad at what its done to my son on a good day yes hes mld on a bad day he fits in sld so if no one minds if i join thread

I'm not sure we fit here either as we fall inbetween too. Ds 9.5 exactly has Mod/sev LD with ASD. He attends a MLD/ASD school which is really brilliant and values his interests. He loves social contact and enjoys the busyness and activities at his school. He enjoys cooking and ..... wait for it ( fan fare as new development) he is dry more nights than not now! He has energy to spare and can run like the wind -but has recently learnt to check we are in hot pursuit or even wait which has made life so much easier! Oh and he has a wonderful smile! He takes a lot of parental energy but we have just Ds!

saintly - did you go through a toilet training programme of any sort? Can't seem to get advice on the best way apart from regular toiletting and 'reading' matter while on the throne to concentrate the mind!
I totally agree - always feel that i can cope if I get enough help - living with a child with such complex needs can be beyond human endurance for a family, but like you we tick over with support.
Fio - we're still on the geneticists books tho' no dna stored as far as I know. I remind them to test him every so often because there is no automatic recall. I'm still desperate for a diagnosis
SJ - would love that diagnosis to be Angelman's! - What's the national support group like? They say they welcome kids with Angelman-like symptoms but no diagnosis, which is very honorable of them. I'd feel a bit of a cheat joining tho'
R3 - I found the first few years with ds desperate. He did almost nothing apart from stay awake all night - a 'no reward' child as I've heard it horribly termed, (tho he smiled luckily), but then at 3 he woke up during the day too and started behaving badly - another form of desperation!
magso and phoenix - of course it's ok to join the thread. I think all parents of SN children share experiences that NT families don't tend to understand.
We thought ds was SLD then a school report at 5 yrs described him as 'profoundly disabled'. That was a shock. The categorisation of our kids into MLD/SLD etc. is probably an innacurate science - ds is very disabled but has a totally mainstream, age-appropriate hobby in that he loves live music gigs, (we tell the staff he's 18 with a growth disorder), and is often to be found at the local dive watching MySpace bands (while - not so age-appropriately - shitting his nappy: always happens when he's happy!). He ditched Thomas the Tank Engine for heavy metal overnight. I know plenty of MLD kids at SLD schools and vice versa

donkey - we just put him on the toilet and forced him to stay there. Actually I was crap at it, but my Mum was very good. She chose dinner time as a regular time and just repeatedly put him on the toilet then kept him there by shoving books/toys etc at him and talking to him. After about a year (literally) he suddenly 'got it' then night time training just came immediately. He lost that a couple of years later- again overnight. I think he liked wetting himself intitially so it became fixed, and now he's in nappy's but the wetting is still fixed iyswim.

Toilet training has and still is one of the things that distresses me! (there is this constant smell in our house!) It took many years for ds to cotton on and accidents still happen regularly even with the recent progress. I think it is because it is not important to him! Why do we get so little help with such important issues?

I have to say I'm glad you're talking about this because I don't understand how you toilet train an SLD child at all. .

I could sit DD1 on the loo I suppose. But the process to getting her to know what it is for would be torture for everyone. She has no reinforcers. Well OK, possibly food, but she goes through periods of not liking food much so nothing reliable. So I'd sit her on the loo all day - hold her down forcibly, presumably, there'd be a lot of screaming and crying. And eventually something is forthcoming and there's a food reward which she may or may not fancy. But for her to connect the food with the toileting, we'd literally be there all day every day. For weeks. With no play and no distractions it really would just be about holding her down and singing for hours and hours and hours. And she'd get a bathroom phobia or something - she'd be beyond miserable. And the most I think that would achieve after several weeks would be that if you bunged her on the loo she might wee if she felt like it. There is no way on god's green she would work out from that that she could ask for the loo if she needed it. She's only half grasped the idea that you can request food if hungry and doesn't really understand that you ask a person (as opposed to eg the sofa or the telly). And food is a much more simple and immediate concept. To get her head round the idea that you notice that you want a wee, then you ask to be taken for a wee and then you do a wee and then you get food...

I can't imagine it from where we are now, and I suppose the thing is I can't imagine the intermediate steps, either. I can't imagine the little changes that are going to happen to make it possible.

Am I just being weak and feeble? I mean, obviously the easy option is to leave her in nappies forever ... but is it just the easy option? Am I being lazy?

r3dh3d - we've always had problems with reinforcers too. IN ds1's case he got the reinforcers for sitting on the toilet, so a constant stream of choc buttons shoved into him - the idea was just to get him sitting there. If he got off we'd sit him back on and throw Thomas at him- anything to keep him there as long as possible. Eventually we occasionally caught something by accident and then it was big cheers and response time.

We didn't bother with teaching toilet as a concept or asking for the toilet. The aim was literally to get him sitting there as long as possible. Some days it was minutes, other days more successful. It did take about a year, but wee and poo came at the same time and really overnight.

we used the older version of this book - which would be suitable for LD's (it is more relevant to LD's than autism). It gives different techniques you can try.

Hi donkeyderby and everyone else . My ds is 7yo and has Angelman Syndrome del+. He is non verbal, doesnt sign, can walk on his own terms ie where he wants when he wants,(first walked at 3) but he is unsteady and also uses a wheelchair. Has epilepsy, challenging behaviour, scoliosis doubly incontinent etc etc etc!!! he is also the happiest smiliest little boy I know and he brings an enormous amount of joy to everyone who meets him. He loves chocolate, cheese & noddy. he goes to the local (only) sld/pmld school which he also loves.

There are quite a few ways of having Angelman syndrome and the children who have UniParental Disomy, Mosaicism, etc can be higher functioning-some that I know walk, run and jump and speak almost perfectly. One I know of wanted to know why he wasnt the same as the other boys in his (ms) class and wanted to know why he couldnt catch the ball the same!!! There is a huge range of abilities depending on karyotype. There is also something called Idic 15, which is very similar, affects the same chromosome as A/S but is NOT the same-might be worth looking in to? here

The Angelman Syndrome Support Education and Research Trust website is due for an overhaul soon and tbh there isnt really much on it-it does have a few links that might be worth looking at. here

I am the NW trustee of ASSERT and you are more than welcome to register with us. we have many families who have 'Angelman-like' children and you will have access to lots of info and professionals that may be relevent. We have Bi-annual conferences, Regional meetings and trips and also a newsletter and phoneline. feel free to contact me at [email protected] or call ASSERT 0300 999 0102 for a chat or for a registration pack. The lady on the phone at the moment is called Kate and is also an AS parent.

Nice idea for a thread

Hi DD - I was just about to say monstermansmum would be the one to ask about assert. I'm in the process of registering. Monstermansmum - I sent an email to the info email on the assert website with my address - should that do?
R3 - we haven't started even thinking about toilet training either. I know DD is very young, but I just can't even imagine it. DD isn't great at eating so food would definitely not work as a motivator and has yet to let us know she wants anything ever. No signing, copying, pointing etc etc. Who knows what the future holds I guess

Hello everyone. My daughter is 11 and has SLD, her diagnosis is delayed development.

She still has glue ear and a fluctuating hearing loss after 3 sets of grommits and will be having a hearing aid soon. She walks ok but has a strange running style. Her speech can be very unclear. She uses some Makaton. She was toilet trained in the day at 4 and I used a bed wetting alarm and desmo tabs when she was about 7 to get her out of nappies at night.

She starts at a new school after half term. It is a MLD special school although lots of children there with more complex needs too. She will be in a mixed year nurture group.

hiya my son has also got sld/gdd poss fragile x

Hi SJ-If you emailed ASSERT the chances are we may never get it!!! The email add is registered with the chairperson and he frequently gets over 2000 spam a day whch he doesnt get time to filter. Hopefully he will have recieved it . The best thing to do is send me your name and address etc to the email add below, or find me on face book (Rachel Martin) and I will pass on the details directly to the trustee who sends out the registration packs. Dont worry about dd not pointing etc yet-my ds doesnt point but he does manage to let us know what he wants!! He will take us by the arm to the cupboard or fridge, or he will get a cup and give it to us if he wants a drink. If the fridge is unlocked and the gate is open he will even get something he wants out and is usually eating it (through the wrapper) before we realise. He isnt, and I dont think ever will be, toilet trained as he doesnt show any awareness a all. How old is your dd (forgot sorry

Thanks, so much useful info. Ds at 12 finally learnt to sit on loo and do a poo - only in the evening, will not sit on loo at any other time. It's a start though. Will get the toilet training book.

And, thanks for the Angelman info, monster. I'd just love to join. I've looked at the ASSERT diagnosis page and ds just fits in almost exactly with Angelman syndrome. He's recently started going on and on about cheese too! The only thing that doesn't fit is the wide mouth - though very odd teeth - and obsession with water. I'll be in touch. Lovely to be in contact with you all.

Thanks monstermanmum - I'll resend the email to you.
I'm really looking forward to the day that DD lets us know what she wants. I know it will come - she's nearly 3 so still very young and she's made a lot of progress in the last year (can now sit still and concentrate for more than a millisecond!)

Can I ask about local nappy policies?

Because ds1 is toilet trained during the day we can't get any free nappies, so I currently buy pull ups. What will happen when he grows out of them (he's 10 now)? Different HA's seem to have completely different rules and regs.

I'm sure that you could get pullups from the Local authority here in Bolton in your situation. We could only get nappies at 4 and we are only given 3 a day , you can get pullups if your dc is on a toilet training prgramme, which I am sure your dc would be classed as, although it probably varies alot depending on where you live.