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????

Oh my above should say 'at an age when you might expect them to b independent'. So for example I supervise ds3 by roads because he's 6, I hold ds1's wrist next to roads because he's severely autistic - a 12 year old woukd usually be able to be unsupervised near traffic.,

Just bumping this thread.

My ds with severe intellectual disability and autism has just started in a new school. He's 5.5.

At the moment we're having a tough time with sleep since Christmas- usually ds sleeps the night but now he wakes usually twice a night and is usually very upset. If he's still awake after 5am he's up for the day. We've adapted by going to bed much earlier but I'm still finding it very tough as he screams and cries for up to an hour when he wakes and this is very hard to take

There's a possibility of a constipation issue - he had this before and the last few days he's had 2 days days where he had loads and loads of poos and also poo accidents.

We're also down to get new grommits as he once again has glue ear and has had 4 ear infections in the last 2 months.

All of this has made start at his school very stop start. It's a special school for children with autism with 1:1 ratio.

How is everyone else getting on?

I've heard of a lot of people having sleep problems atm seannos. I don't suppose the ear infections help with sleep either :( Ds1 used to get repeated ear infections but did grow out of them (ditto ds3) - I hope that's the case for your son as well.

We're doing well - ds1 is doing really well with his new talker and I've started a blog with lots of videos here: a life unlimited if anyone thinks it might suit their child feel free to ask any questions. DS1 pretty much refused to use all electronic communication aids until we came across this one which he loves, and it is organised differently to most - and I think it's that that really suits him. I'm just beginning to find out how much language he already has. There are gaps obviously, but I love it when for example he asks me for something, I say no and he replies in his American talker accent 'later'. The first time he did it I almost crashed the car - he was trying to send me down a narrow country lane ('right right right') on the talker, I said no chance and straight back he said 'later'. I had no idea he knew how to use 'later' in conversation iykiwm.

He's still surfing as well which seems to help keep him calmer. We're not going this weekend and I suspect we'll suffer a bit because of the lack of surfing. Roll on surfing next week!

I think there is a lot of difficulty in really shading the 'spectrum'. Most can tentatively identify very high functioning as being very highly functioning and also can identify very low functioning as being very low functioning but most of what is in between ( which is a lot) is judged as being relative to what you are comparing with. ds1 is definitely not HFA but compared to very LFA he can look 'good' conversely can look 'bad' compared to very HFA.

Hi saintly I had a look at your linked blog. I can totallly relate to the chaos you descibe with family life with regular kids a son with special needs. We have two nt children aged 4 and 2 as well and our house is fairly mental. I'm told it will get much easier with the nt anyway but I'm not so sure! The bit I find hardest is how much they talk and ask questions and that I want to be into what they're doing as well as trying to constantly run programs with ds1 with autism and LD. And really there just isn't enough time! My sister has reassured me that they will grow up with a much greater ability to be flexible and accomodate things that don't do the way you plan. I certainly hope so.

Your son sems to be doing great things with his surfing and his ability to use the new communication device is really really cool. What was he like when was younger? I do sometimes wonder what my son aged 5 now might be able to do in the future. And I know it is completly completly pointless to try and guess but I still sometimes do. Imaging that he might someday surf would eb amazing - I did a lot of surfing before I was a parent so I relate to the benefits and thrill of outdoors and a bit out of control activity.

Hi willowcat - I know what you mean about categorisation - lots of people have islands of ability and disability that don't really go together in a straight line. I think for me what resonates about this thread is that pretty much most of the time I don't fit in or relate to a lot of the autism threads - because the children talked about are light years ahead in terms of ability from where my ds is at. people often tell about such and such an activity/aid directed at people with autism and I know that the referred to activity would be meaningless for my son because he's just not able enought to use it or even be remotely interested.

Will reply properly later but between the ages of 3 and 6 we couldn't get ds1 onto a beach!!! Let alone surfing. Or onto the moors.

He's come on a lot - particularly in the last 18 months (he's coming up to 13 now). I used to worry so much when he was little that we were running out of time for things to improve. but that doesn't seem to be the case.

Thinking back aged 5 he couldn't tell us where hurt, he had no understanding of yes or no at all - no concept of it, he couldn't imitate at all so everything had to be taught hand over hand, he had to wear a harness when out and about to stop him running away.

It has got easier as the younger two have got older - Before I used to sometimes end up grabbing ds1 and ds3 who would be trying to head in opposite directions. Now ds3 is 7 I can yell at him to do as he's told! And ds2 helps out now - in that I can for example leave him and ds3 in the car while I take ds1 to the toilet next door or something like that.

Thanks Saintly

It's really great that your son continues to learn. I had recently started to wonder that now ds is 5 that is this pretty much it and that we won't see any big learning. But sounds like it's always worth looking for those new skills and interests that click with him. Small steps. And a lot a lot of patience and work (from him and us).

DS now at 5 has poor comprehension of language (but has a little which is a great), has some immitation (taught over the last 2 years) and still has poorer than average gross motor skills but again has improved a huge amount in the last 12 months and loves balance beams and steps while still needing lost of assistance with these - we worked a lot on gross motor skills down through the years because he was always very very wobbly

Can't wait for my other 2 to get easier (and then will probably be all sad that they're all grown up). But I will probably be a bit more sane then rather than juggling too many balls all of the time.