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????

Sorry folks I did not mean to stop the thread!
Whilst here can I ask how you cope with meltdowns when out and about. mostly I try as do we all to avoid them of course but recently I have found myself unable to physically cope! Ds is almost as tall as I and once he lost it all I can do is try to shepherd him to safety or get others out of his space till he is calmer and able to notice his surroundings. It is usually me he hits but he is quite unaware of others if they are unfortunate enough to not steer clear. Since starting his new school meltdowns have increased. He needs to run off his upset so cooping him up all the time is not realistic.

yay, dont feel so alone fit right in here. ds is 10 severely autistic, gdd, adhd, low muscle tone and pica. ds is still in nappies, doesnt communicate, sleeps very little, cant dress himself, finger feeds, and is pretty much a baby as i do everything for him. He is the most adorable loving little treasure and i am very lucky to have him, though he is extremely hard work.

magso - ds1 doesn't do it too much these days so I just tend to hover, or tell him off (depending on how far gone he is). If he was doing it a lot I would put him back on his crelling waistband belt harness thing and give him the space to have the meltdown while holding onto him. Once he'd calmed down a bit I'd let him run. But tbh we don't really go to places with traffic - so it's doable - would be harder in crowded places or near roads.

oohh shazian ds has pica too, never 'met' anyone else whose dc has it although i'm sure there are plenty. Wood remains his favorite choice or the fecking tv remotes - spend a fortune replacing them!
Magso we have copped out, ds uses his wheelchair whenever we are out now. He is such a big fella that I cannot physically stop him now so for the safety of everyone, most of all him he is pushed

DS doesn't really meltdown in public much, it tends to be at home, usually because he czan't go on the computer. He self harms mostly but will hit out at people if he feels they are getting too close. He punched a police van on bonfire night as the crowds were overwhelming.
We've stopped using his buggy and not sure we want to go to a wheelchair. Maybe when the LO's are out of their prams. Or before we renew the mobility car so we can show we need a 'proper' 7 seater

Thank you. I guess my instinct is to avoid going out alone with ds. Idid manage to take him swimming during half term -the first time alone in 2 years, but planned it for a good time of day and it went well. It was a pool where I did not have to get in the water which I found easier. I think what has frightened me recently is the apparent suddenness of jumping from itsy to full blown completey lost it! Some situations I know are dodgy( dentist, hospital) so I plan for trouble IYKWIM but after school ds is wired he can seem calm but can really loose iy if he most pressing demand is thwarted. Actually everything recently that has gone horribly wrong has been after school. The new school expects a lot of them and gives a lot of freedom a huge jump up from his primary. Both were technicallyclassified as MLD but the primary was also ASD specific and understood so much better.

I know magso, can completely relate to the spectrum of being fine one minute then completely losing it the next. We call ds Jekyl and Hyde (sp) and predicting when he is going to be dreadfully upset is very difficult.
It's blowing a gale here today so the heating is on and think we are going to have a quiet day playing Mariocart and watchig rastamouse
Perhaps if we are allowed may get to watch some of the match later on this afternoon.

oh housemistress, so im not alone. never known anyone with it either and ds goes to special school with about 65 kids from age 2-18yrs. its hard going eh! my ds favourite is mud eeuuch lol. in fact he faecal smears too (if he is left alone for 1 min), this is the worst he even eats it. DS is on 3rd week off school, at the moment he seems to be stressed to the point where he is screaming and rubbing head so hard he is now bald on each side head all bleeding and weeping. have been waiting on school coming up with solution, as prob seems to be there, perhaps xmas preparations which he cant cope with. Hard work trying to keep them occupied isnt it have other 2 NT kids aged 12 & 9. Sooo busy wee house here

bakelitebelle and everyone else.

i am just wondering what you consider to be a really good respite package, as i noted you said it had helped you.

we have started with respite this last year, and although it has been hard cos our son is only 5, we know we need to do it for our whole family. his big brother and wee sister need a break as much as we do! i also try and think about it helping our son for his future "independence" and life experiences, as his siblings will go on sleepovers (and already do to their aunties), but he is unlikely to get the chance.

so far thank goodness, the respite has went very well, and he appears to enjoy it. over the last year he goes to a shared carer about once a month. and this month he went to a specialised respite unit for the first time.

i would like to know how much respite others get, and what you feel you need? and what you can all (as a family, parents and child) can cope with?

Ds has 12 overnights a year at a respite centre - started at age11. During the introductions and getting used to it he had some 'teatime visits' when he went after school had his tea and then I picked him up. A regular tea time slot would be wonderful (ds does not get these) but it is often the younger children or those with very complex needs, with one day a week tea respite usually picked up straight from school.

Ds gets 2 nights a month started when he was 11. We were offered them a lot younger but we weren't ready.
He also gets a saturday morning club every other week and at least 1 activity a week during holidays. When he is 14 he will stop the saturday mornings and get an extra 2 nights respite a month.
Respite in our area is linked to need and severity of illness. Some of the kids get up to 3 nights a week and some only get 1 a month. Be prepared to miss him a lot. We notice the house is really quiet without him but we wouldn't cope without these regular nights away.
I think the level we get is enough for now and he is comfortable with it which is the main concern

Yogabonkers my ds aged 10 gets 21 nights respite per year. At a respite centre. He also goes out every 2nd saturday with Sense Scotland for 5 hours. His 21 nights is split up, i put dates in a year in advance, so try to work out Mon-Fri then 2 months later Fri-Mon. My ds has been going since about 6 yrs, like you i wanted him to go (much as its hard and i miss him), for the sake of my other 2 ds (aged 12 & 9). He seems to really enjoy going though as he doesnt communicate it is hard to tell exactly how he feels. The house is extremely quiet when he's away. i miss him terribly though it makes me appreciate simple things like sit with a cuppa and watch tv, things other families take for granted. I also worry about what if anything happened to me, and he was not used to anyone else, so yes i feel he needs some independence for the future. Like Debs75 says it has to be something that you are both comfortable with, and a also wouldnt be able to cope without these breaks. When it gets extremely hard at least i can say i've only got another ..... until ds respite, which then gives me time to recharge my batteries and more importantly quality time with my other 2 ds.

It is the 'what if' that got me searching for respite (health problems). We also had some direct payments to provide additional care to support ds in a local (ms) afterschool club.

thanks everyone. for us too, it was "what if" we're ill, and no one else has ever looked after him, was a factor too.

yes it is really quiet! for someone who doesnt speak, he makes an awful lot of noise! we miss any of them if they are not about, although we really appreciate the rest.

shazian, our ds went to a respite unit run by sense scotland and he had a ball! we did a lot of prep groundwork and so did they with visits to them, and their staff came to us, and we felt they were really thorough which obviously contributed to the success of the first overnight. they brought him home and came in with him and he was running about the living room laughing and giving me kisses. we were relieved and pleased!

there is not much going on at weekends here for our ds unfortunately. i dunno if sense scotland only do that stuff near glasgow, but we are a good journey away. but must investigate!

Missed the discussion about respite. DS1 gets one night a week - one week it is on a school night and the next week it is on a Saturday with an activity club tagged on the front. Initially he only had the night but he spent the whole saturday screaming with anxiety about waiting so I sent SS the video.

He also gets 15 hours a week of direct payments a week during school holidays so I can pay someone to help me take all the kids out. If ds1 is stuck inside for a day he starts self injuring and doing damage but I can't get all three kids out alone.

That package is fine and keeps us sane, although SS are currently trying to cut it.

So how are we all coping with the run up to xmas? DS1 has started going a bit loopy and anxious and started a hideous new tic with his head which includes much eye rolling.

On a good note he's still surfing (although I really do need to work out how to get some gloves onto him). I am boring everyone with this, but of him taken at the weekend. I really do recommend these guys - they are absolutely fine with severe autism and severe learning disabilities

aww your not boring us with his surfing its lovely to see and you must be so proud.He looks so at peace on that board.

:) I don't know about proud, I am, and incredibly grateful to the surf school, but it's more so happy - it's made such a difference to us all. Because he's so well known at the beach now and because the surfers, lifeguards and people who work in the cafe are all so great with him it doesn't really matter if he's having a very autistic day iykwim. He can run into the kitchen in his dripping wet wetsuit (and he did), and whilst I obviously need to extract him, the fact that they know him means it doesn't really matter in the way it can do elsewhere. And if he's trying to climb in someone's car while I'm trying to sort something out with the board or find our gear or whatever one of the surfers will grab him.

Thanks saintlyjimjams I loved that film.

My DS is only 3.5 so we haven't reached the stage most people on this thread have. But he is severely affected by his ASD so it's useful to lurk here.

I never cry about DS and his issues, I'm not sure why, but your film had me choking back sobs from the start for some reason. It looked so peaceful - made me want to surf!

:) scobe - lots of people have been in tears watching it. I'm hard as nails but quite often want to cry when I see ds1 surfing. I think it is because it's about the only time he sits still, and he's so relaxed out there- especially sat out the back. I never tire of seeing him like that really. I also never thought anything like this could be a possibility. I refused to take him the first time we had an opportunity to try surfing as I said 'well that won't work will it'

Saintly that is a lovely video. It looks bloody cold though, is he someone who doesn't feel the cold? Ds is a bit oblivious and often has freezing cold hands. He obviously loves it, how did you get him started?
Our ds recently went canoeing with the local disability group and they want to take him kayaking if they can get the chance. They said he was great, he listened, didn't kick off and really enjoyed it. He loves water so surfing would probably engage him. I'm not keen on the sea though, and I don't think we get many big waves in Yorkshire

I know people surf at Whitby! The waves don't need to be huge. DS1 goes on the south Devon coast which is ideal really. Dh and I recently had a couple of days surfing at Watergate Bay on the north Cornwall coast and were mashed!!

He first went to the Breaking the Barrier events. So he did 3 years of those (half an hour surf once a year) and loved them. After the third one the coach who had taken him out said he seemed to enjoy it and suggested we bring him to a couple of group sessions they had funded. So we did those, and then I just started booking him in. He stopped last December when it got cold and I re-started him in May with his birthday. He had a few session and then from sometime in August he started going more or less weekly. This year he doesn't seem to mind the cold (although it's been pretty warm until this week tbh - I only wore boots for the first time this week). I will need to get him wearing gloves if he's going to go through the winter - which is proving slightly problematic, but he keeps banging on about surfing so I think once I find something he'll wear he'll be okay. Ideally he'll wear a hood as well.

He didn't used to go out anywhere near as far as he is in that video. That's happened very gradually. And he used to do a lot of charging up and down the beach - that changed in August when he started just wanting to be in the sea (and is great because it means my input isn't needed so I can just surf for the hour that he's out in the water).

Hi, marking place, got to run, brb x

Hey,
When I asked our paediatrician what it means when people ask where DS is on the spectrum (severe, mild etc) she said 'it means they don't have a clue what they're talking about'.

How do I know how to describe my son's type of ASD?

What's the criteria for 'severe'? or low or hight functioning??

please help x

My son is severe, no talking, in pads and he is visually impaired. I have to do almost everything for him :( Scoop his food etc

I think functioning/severity depends on independence personally. If your child is always going to need 24 hour care/never able to walk down the street alone/never be able to be left alone in the house/ need constant supervision they're severe.

What did your paed mean him? Seems a bizarre thing to say!