A thread for those with dc with severe/ very low fuctioning ASD?

[TheHouseMistress]

Would anyone be interested?
I know Autism/ Aspergers posts are in the majority on this board but I genuinely find it very difficult to 'fit' in anywhere.
Such a massive spectrum.. Ds is a joy, has developed well over the last couple of years but remains severely autistic, he has the associated sld still on p scales at 10 has huge behavioural problems but we would'nt be without him :)
Fancy sharing ideas and a bit of support????

hi housemistress.

yes i do! my ds is only 5, but doesnt talk (tbh i dont think he ever will) and still in nappies (tho hopin to start structured toilet trainin prog in new year) (god, sorry for txt spk!)

our ds at first nights respite tonight! . but i know we need to do it, and he'll be back in the morning.

Hiya yoga :)
He will be fine, I remember well ds's first respite stay, he LOVES going now.
Ds started talking at 81/2, we thought he never would. Admitedly he mainly talks complete nonsense but it has certainly made life much easier for him and us.
Is your ds at ms or ss?

I know the feeling of not feeling like i fit..DS is classed as severe/low functioning but he can talk,although its all scripted and learned phrases.
He attends a resource unit but i think we might have to think about special as they seem to be struggeling with him.He his toilet trained and did this from age 3 so we have been lucky in that way.
He doesnt go to respite cos hes only 7 and im still finding it hard to think about but i know i might need it llater on.

I remember looking at special schools for ds2. I remember the head explaining to us that ds2 was too low functioning for her school.
I think that was my lowest point.

But he is 15 and a total joy. He has us very well trained now

Hello - good idea! DS1 is 12, non-verbal, attends an SLD/PMLD school and in his own little way is doing very well. Behaviour is generally good (by which I mean good for a severely autistic child ) and he communicates well now.

His life changed dramatically when he started surfing. For the first time ever I look forward to school holidays and I am actually hoping for a strike day on 30th so he can go surfing (there's a reasonable chance of some swell that day). A year ago I would have been weeping at the thought of an extra day at home with him!

He's just been given a Vantage Lite and is doing LAMP. The blog is not properly set up yet (was going to do it this weekend but have been ill so went to bed early each evening) but I will be tracking his progress here: alifeunlimited.wordpress.com

always forget to tick the box
alifeunlimited.wordpress.com

DS is 4, ASD/ SLD attends a special school. Still in nappies, can't dress himself, sleep and sensory issues. Speech has improved a lot in the past couple of months, he is starting to use phrases such as "I coming". He is very sociable but only on his terms - he will ignore strangers who try to speak to him! He is very rigid and likes routine, no sense of time, no empathy.
I try not to look too far ahead - some days he seems so much improved and then other days are a nightmare!

Good thread

Our DS is 5 yrs 2 months. Hs has autism and a learning disability which is probably severe but hasnn't been assessed recently. Like other posters our issues often don't 'fit in' with discussions from other posters with children with higher functioning autism.

DS has had a high level of intervention in a home program since age 2 although it took quiet a while to get the appropriate intervention (needed to make things much simplier and targets more realistic).

Starting a special ABA school early 2012. Don't know how that's going to go yet. Pretty nervous. My baby going big school where I can't be there all the time.

DS non verbal with limited comprehension of language (although comprehension has really come on this year compared to last year). Not sure if DS will ever speak but hearing that other children started to talk at 8.5 does give me hope that even this late it may be possible and we should keep trying (even if it was scripted words I would love to just hear his voice)

Started toilet training June this year. Now on a schedule i.e. brought regularly through the day . Doing really well compared to where we started and I'm very proud of ds and our achievement. DS doesn't ask for the toilet although we are really trying to push using the PECs (he uses PECS for edilbels etc). Now being brought every 90 minutes and has been dry and soil free 5 days in a row last/this week which is our new record. Accidents recently are also much more understandable ones (we're in the car or just after swimming or when DS needs to poo he often has a wee accident cuing us to bring him to toilet for a poo). Was really really tough through July and August - I think lots of people would have given up because for 3 weeks it really did feel like we were going nowhere but we have good support from our team of tutors and both DH and I were really commited - it was very stressful for everyone - I was pretty obsessed by the whole thing and the family never went anywhere (I think out record number of accidents was 14 wees in trousers one day - and this 6 weeks into toilet training). So you need courage. And a medal for whatever you do achieve. feel free to ask me any questions when you do start toilet training.

No really difficult behaviours from DS - some shouting or crying but manageable. Sleep is good (although it can go haywire for a few weeks which is a pain and ususally we discover a cause)

Interested to hear from other parents and to hear about your children.

Hello
Ineedstrongcoffee love your username :) I could do with a caffiene drip in some days. Is your ds in an autism base? Ds goes to ss and has done since he was 4, it is a fab school and they really treat the children as the individuals that they are.
Pagwatch I have been on mumsnet for a good while(bit of a namechanger) and I love your positive attitude, have you always been like this?
Saintly I think we have 'spoken' before, seem to remember saying to you just how normal your ds looks (no offence meant) whilst he is surfing. How utterly wonderful that you have found something that he loves doing.
cwtch how fantastic that your ds is doing so well with his speech :) Totally get what you say about not looking to far into the future-it's scary!!
seanoss I don't know a great deal about ABA but sounds like you have got a good school which will be able to continue all the hard work you have done.
In regards to ds, we never ever expected him to talk, I think what did it for him was asking school to abandon the use of pecs which tbh he never liked and we all started using Makaton. Within 18 months he said his first word home Like ineed ds he is mainly echoleic (sp) but he can say what he wants now. I never tire of hearing his voice (unless it's 2am and all you can hear is "downstairs" )
He is continent of urine and self potty trained one day he took himself off to the toilet and has never looked back, think he was about 7.5. Still in nappies at night and for poos.
Behaviour wise we do have problems but always have, so nothing new, it's just harder now as he is so much bigger and heavier.

Re toilet training. My mother made it her mission to toilet train ds1 when he was 5. She would feed him full of orange juice at tea time them glue him to the toilet seat by shoving thomas at him and putting him back on every time he got off until he produced something. It worked! (eventually). I am grateful to her because with ds1 having 2 younger brothers as well it was something I just couldn't do. He was very quickly dry at night, although regressed for a few years when he liked to wet his bed every night (and he did like it - it was behavioural). Thank god we're over that one now.

DS1 couldn't imitate until he was about 8 but since then has started using more Makaton - he seems to pick up a lot at school although he tends to be quite inaccurate in the way he signs.

TheHouseMistress,
It is nice that you think I have a positive attitude
was I always like this? No.
When ds2 was first diagnosed I swooped into a massive depression which lasted a couple of years. But by the time ds2 was six I felt as though I could feel happy again. I still worry so much about his future, but I know he is mostly happy and that really helps.

I think we each have our own adjustment process. Some take longer than others don't they? Being on here, talking to peers helps. Helps me anyway.

I have noticed that I read waaaay more than I post on sn though. It used to be the first section I checked and engaged with. Now I find stuff in active convos and then read the section once a week or so. But don't post that much.

checking in here..DD is 5 with severe ASD..am at work and will post more later

ds is 10 and severe ASD/AHDH/SLD/Challenging Behaviour and huge sensory problems. He is a gorgeous lad who has come on so much and who I am very proud of. He is in SEN primary school and we are just starting the transition discussion for secondary school.

Even within his SEN setting ds still stands out and struggles and sometimes that really hurts. He had a bad day today and I can't help feeling guilty for those that have had to cope with him. Most the time ds is very even tempered but he is a big boy and when he does get cross we know about it.

About 12 months ago we actually got a Disabled Children Social Worker and she has helped get us some outreach and support.

DS1 is 4, ASD and SLD. He started special school this september and LOVES it. He has almost no functional speech, although he is vocal all the time and does repeat. He's just started saying the odd word in context like 'shoes'. He is in nappies but school have decided they are going to give training a go in the new year...I'm not sure but watch this space.
He is a very gentle child, and affectionate with his main carers. He uses a few basic PECS to ask for favourite food items. He has a younger brother who he now tolerates much better than he did 12 months ago. Possibly because DS2 is now 3 and a bit less in his face.
He has very rigid and limited interests - mostly based around patterns or lining things up. He has no interest in peers. School find it very hard to engage him. He is unlikely to ever go mainstream or be independant.
He is a happy child and laughs a lot. there are problems if his routine is upset, and he is a runner so often goes in the Major buggy outdoors.
We all adore him and wouldn't change him. He is happy with who he is and that gets me through.

Yes DS is in an autism specilic unit but i dont think its going to work .The staff are fab but hes the most severe by a mile and they are stuggeling.
Im really feeling quite down about education at the moment because he just doesnt seem to fit anywhere.

Well i'd never of posted on this thread a few months ago as i hadnt considered ds2 to be severe but his recent assessments have very clearly described him as extremely low functioning or low functioning in all areas.

He actually has a pretty good level of understanding (maybe just a couple of yrs below what youd expect for a 9 yr old) & can speak, has a pretty good vocabulary but struggles to converse with anyone. He is better at home with us where he has good functional language but no conversation.

He is in MS primary with ft 1to1, but we were recently asked which SS we were considering for secondary.
He was potty trained during the day for wees at 5, the rest has gradually happened.
He has no real behavioural problems but has huge sensory issues that are very restricting and also OCD which is at time controlling.
He constantly sniffs, licks & sucks thing, seeks pressure & at home is wrapped constantly in a quilt or blanket.
He also spits alot although he knows its wrong & hides to do it.
He also does not go out of the house without a huge fuss & becomes very distressed.
He is also a very loving cuddly little thing who we adore & wouldnt change (well maybe some bits) :)

Also academically he is at reception level, so progress is slow. He also has mild CP.

Yey! A thread I fit in. Ds2 is 5.5 significant asd, ld and behavioural difficulties. He is still in nappies and shows no sign of potty training, still has a dummy and drinks out of a sippy cup.
He did do 1 term in a base but within a few days we both decided it was not right for him and is now in ss, his speech is touch and go, if you know him you can make out what he is saying and he can say 2-3 words together but the words are not clear. He is a joy, so loving and funny.
At the moment he is not well at all, I think he has a chest/throat infection but as he wont go to the GP practice or take medicine then we are just going to have to ride it out, which is heart breaking . Someone told me about calpol suppositories today so I am going to ring the docs in the morning and request a prescription.

keepingupwiththejones - will your GP sort out a homevisit? I am fortunate that ds GP has said that it is too stressful for ds at the practice so will home visit if needed.

Good luck with the suppositories - in europe they are used widely I believe but there is a reluctance to prescribe them here. Ds has had them in hospital (after he refluxed his meds all over the nurse) but I was told I would have to go on training if he needed them at home. ds is 10 now and meds are easier (never thought I would say that) - he has ADHD meds crushed in juice 3 times a day and have told them about it "make ds feel happy" and he will tell us "meds" - hope eventually to work on swallowing them whole so he can go on slow release.

I'm glad this thread has been started but not sure I can join
DS is 15 and has - very - SLD with an undiagnosed sydrome (some physical, visual disabilities). The psychiatrist has sort-of diagnosed him with ASD but the school disagree. He has many autistic behaviours and is challenging, doubly incontinent and still drinks from a feeder cup.

Our main issue is the challenging behaviour and sleep deprivation. A good respite package has saved our lives. Now looking to the future....

hi again! had to get to bed the other night housemistress!

my ds wouldnt take medication from a spoon either, but when he got tonsilitis a couple of years ago, i decided to bite the bullet (i can be a bit of a sargent major mummy...).

so, loaded up the medicine syringe, lay him flat on the floor, straddled him (arms hled tight by my legs), and forced the syringe into side of his mouth and squeezed it in a wee bit at a time.

god, that sounds really awful! and he wasnt happy at first, but now he will just sit on the couch and take the syringe in his mouth quite happily.

but good luck, and hope you get the suppositries too.

it is really encouraging to hear about other kids who have not spoken till much later on. i read once somewhere, that if kids havent spoken by the time they're 7, then they probably never will. its really stuck with me. glad to hear some are bucking the trend!

i also read a good book recently called "lucys story" written by an autistic australian woman who is 40, and didnt speak till she was about 20, and even now very rarely speaks. another encouraging story.

we are actually home educating my son this year. we live in the sticks a bit, and the only suitable place for him would be "the learning centre" in a local primary school. a catch all unit for kids with any type of learning disability. we just feel he is not ready and his home programme is going well, we might never put him in. (depending on finances, etc!). we have a great teacher who comes in 2 mornings a week. and we would hope to increase that next year.

better go, got to get his wee sis from nursery!

speak to you all soon!

(about suppositories - we get them prescribed for 5yo ds (ASD & lots of food phobias - won't take oral meds). I just called the GP & asked for them, we get them on repeat now. No need for training or anything, they're no harder to use than glycerol suppository for example which is over the counter. It's worth a try they have been a godsend for us)

bakelite - you sound to me as if you fit right in here :) (lucky you!).

We cannot get any meds into ds1 (4.11), even with dh and i both restraining him. We've tried everything humanly possible, but he simply will not swallow it if it's in his mouth. We were prescribed paracetamol suppositories about 18months ago and yes, a complete godsend. I thought all my worries were over on that front but then I went to ask for a repeat prescription and was told that the surgery is not prescribing them anymore as they are very expensive. My pleas fell on deaf ears!

Well ds's fever has broken and he is much better today. GP is pretty useless to be honest, we haven't had a permanent GP at the surgery for about 18 months. mary that's rubbish! yoga we have done that too, but he just spits the lot straight back out. Thanks for the info about the suppositories I am going to ask for some.