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????

when ds2 was refusing to drink i remember the gp saying, he'll drink when he's thirsty.. yeh right.. he doesnt know if he's thirsty, hungry, hot, cold etc.

I did actually Roger but I accidentally called you by your old name so deleted the sentence then couldn't be bothered to write it out again

Oh yes the old 'he'll eat if he's hungry' er no he won't. Tried that. He went into ketosis and spent three days vomiting.

he ended up with dehydration & wasnt weeing or pooing. Luckily he developed a love of spitting so for a while permanantly ahd a bottle of water in his hand we were constantly showered but at least he learnt to drink

Ah we had a spitting phase. :embraces dontremember: yes that was a low point!

its lasted 4 years so far, although now he knows its not allowed so just runs off & hides to spit. Yesturday he was sitting fully clothed in the empty bath with a sports bottle, swilling it around his mouth & spitting it down the plug hole.
He looked very embarressed when I found him & just said sorry!

I do think it's one of those things you can't do much about and just have to let it run its course (for us it was the on purpose bed wetting that went on and on and on and on - nappies didn't work - he just stripped off - he liked wetting the bed!)

becarooo - no, didn't think you were being facetious! I genuinely think it's a great idea and will ask for a home visit for any ailment from now on (touch wood he seems to have a strong constitution so we're talking once/ twice a year). I'm sick of being the floorshow for all the malingerers in the surgery as ds screams like a banshee from the moment I've prised his fingers off the door frame as we walk in (he hates it there, still remembers the doc trying to prise the stick halfway down his throat so he could check his tonsils 3 years ago) until we leave. There's always an old gimmer that has to tut throughout as well, which really helps. I can't see why we're not entitled to be spared that trauma if at all possible.

saintly so unbelievably reassuring to hear that your ds will eat anything now. That has always seemed like the unattainable dream for us. The holy grail in fact! Would make the most enormous difference to our lives and our ability to spend more than a couple of hours out of the bloody house! School have just started a food programme and I've been a bit demoralised as progress seems to be painfully slow (he's now putting a sandwich to his mouth) but I guess he's heading in the right direction, and they seem to know what they're doing

You do find as they grow they treat you less like idiots Mary Ellen. By the time ds1 was 8 and had 5 people holding him down in an attempt to x ray they'd stopped suggesting star charts

Every cloud has a silver lining eh

Hello - may I join in? I do feel we do not fit anywhere as Ds is somewhere in the middle. Now age 12, he was diagnosed quite late with autism to add to his ADHD and LD (mod/sev) but is a very lively happy lad. He was late talking but talks well now - although not particularly communicative.
Ds has not long started at an MLD secondary after a very good sn primary where many of the his peers were severely autistic so ds fitted in very well. He is working towards the top of the P scales and his new school are finding him challenging, whilst ds is struggling with all the skills needed to cope with secondary like moving class and doing written work ( he cannot yet read or write but is getting the idea and can recognise a few words).
Food is not a huge problem area for ds although texture and smell can be. He has got more biddible (a huge problem area since earliest days)IYKWIM with time but it very different to his non autistic peers at his new school!!

The last time ds needed an xray (last week) he was taken by the respite staff, which apparently went well with a little bribary. It was not his usual hospital (local paed unit closes overnight) but some of the staff knew him anyway!! He was fine - no break just bruised thankfully.

Toilet training has taken years and ds still wets the bed at night although is occasionally dry. We nearly got there using an alarm, but it did reduce the number of wettings per night. I do not know if his bed wetting is behavioural - I think is probably isn't now but I think he is not bothered either way. He lost day time continance when he started his new school but it has gradually gone back to almost OK.
I see lots of familiar names here!

Ps Ds also does not like to wear a nappy ( takes it off) but I am making him carry the heavy wash load downstairs each morning ( he is stronger than me). It has't helped yet!

DS2 (5.5) has ASD with severe language delays and is also hypermobile, with low muscle tone. We've had no luck getting him to do anything on the toilet, but he will often strip off when he's wet or dirty.

He is in mainstream, with wonderful 1:1 support, but now he is in year 1, he really stands out, as the gap between him and his peers is rapidly widening, even though he's made some huge leaps, lately. He's been gradually introduced to the Y1 classroom, as he needs to be out of the foundation unit before the little 3 year olds start in January, as he just walks all over the little ones - with his dirty great boots on. His teachers have been assessing him using flying start because he scores too low on P scales for them to be informative and indicate any progress.

We have the medicine problem with him. The only time we got anything useful into him was when he had a torticollis and couldn't wriggle away. If we manage give him any oral medicines for a fever, he throws them straight up again.

I don't know how I missed this thread, and thankyou for starting it HouseMistress

Maryellen - school really did do the trick it was slow but then sudden. So he went onto mashed potato at school then suddenly was eating casseroles - once he could cope with a sort of mushy texture progress was fast.

And yes going anywhere used to be a nightmare as he wouldn't eat outside the house. I remember celebrating when he started eating chips again because I thought we'd at last be able to get some food out and about.

Ooh goody - I fit right in here. Ds2 is 9 and has SLD with what I imagine is severe autism, though he's never been assessed as such and is, I think, somewhat atypical. He's working between P levels 4 - 6 atm and attends a mainstream school with a specialist unit.
He has some speech - mainly single words and nearly all requests. He is getting better at putting words together, though its mostly rote learnt and not always very clear. So conversation goes something like this:
DS: Crisps!
Me: Ask me properly please
DS: Crisps preese...I want.....IwantcrispreezeIwant

He is very interactive and loves playing with adults - anyone with enough stamina to play endless games of jumping, tickling, hiding etc. Obsessed with Youtube and certain DVDs, but recently is choosing play in preference to the computer/ TV which is a BIG step forward. He is very affectionate and was, until recently, extremely laid back. This has changed as he's become more aware - he now gets angry if thwarted and hits/screams, though he is controlling this more recently.

Trained for wees at 6 but has only been reliable for poos for the last year. We went through some awful times with smearing etc which seems like a distant memory now, thank God. But still wets the bed most nights and has just started weeing on his bedroom carpet for some reason - if anyone has any advice on this I'd be grateful.

Eats pretty well as long as everything looks like a fish cake . Food choices are sloooooowly expanding.

He also has some sensory stims that come and go - the latest being a kind of gurning where he pushes out his lips and tries to look at them. Am hoping it will fade away as other stims have done.

Roger, a parenting course......for NTs...

I have less ridiculous advice from SS since DS tried to attack one of them when she came round. Suddenly we are taken slightly more seriously.

Sphil you forgot to mention that you are my friend as well (and not roger's )

I do recommend videoing behaviours to play at SS. It works!

ooh it's busy on here
We have had a shitty evening here < but not poo related> feeling quite deflated and ds has bless him has'nt got a clue.
Off to bed now, will catch up tomorrow :)

My ds1 is as yet un dx (and prob never will be due to complete lack of interest from NHS paed)

I know how hard I find it sometimes and my ds "only" has moderate LD and asd traits.

I am in awe of all of you tbh. You are all amazing.

x

Bec yes the book was very enlightening and we are making small changes and seeing how things go. Let me know if you want it back

No, its ok. Glad its helpful.

I am quite aware of the fact that sphil doesn't want to be my friend :o

I am however, magsos friend also but she hasn't mentioned it either!

I am so glad this thread is here btw, even though i haven't contributed much to it It's really hard thinking you are the only one and I have even started to think that on MN< hence why i don't post much anymore, but it seems there are lots of us about afterall

Yes I am indeed Saintly's friend . Am intrigued as to who you were before Roger - will do some furtive ferreting.....

DS2 said ' I sorry' to DS1 for hitting him last night. First time when it hasn't just been echoed (I did prompt by saying ' what do you say to DS1?') The other positive thing was that the reason DS2 hit DS1 was for telling on him for stealing bread - I didn't think he had that level of awareness. I am also aware that only in our world would this be seen as a positive thing

sorry Roger! Yes Roger is my friend!