The Pain Of Watching Your Autistic Child 'Do Nothing'

[JakB]

Sorry, seem to be only posting depressing stuff this week! Housebound today as ds ill. I have dd on Thursdays so we're all stuck in. Ds VERY clingy (am paranoid now it may be something more than a cold) so have had to spend several hours observing dd as not able to interact with her properly. DD can spend HOURS doing nothing (just tapping her tambourine on the radiator). Have found this very depressing

Jaysmum, stimming is just short hand for Self Stimulatory Behaviour (and guess what I thought that was at first )!! JakB, I find that DS stims more when he's tired/ill etc. Mind you, he is also terrible at occupying his time. When I hear friends say they've got a day with nothing to do so XX will spend all day on the computer or watching videos I think "if only"! He's fine hanging around the house now which, at one time was a big no-no as he'd be climbing like IG's DD and we couldn't leave him on his own for 2 seconds. Now he goes off, jumps around a bit, rocks, plays on his big OT balls (no more !), sits with us for sometime, then gets back into his circuit. Hope things get better, that idea of "let's interact" which I was first told to do by a badly informed SLT just made me feel totally inadequate, now I'm used to it! No, he does interact a lot but also stims a lot!

Glad to hear that your dd is better JakB

ROFL at your idea of stimming Davros

Davros, it is SO reassuring to hear of your experiences of 'stimming' (LOL at your first impression- it is a strange phrase!). I know EXACTLY what you mean when people say their child has spent the day on the computer etc. DD is very much in climbing mode at the moment and I have visions of us having to watch television on the ceiling eventually. It is really, really amazing to hear another mum who has a child similar to DD. I don't know why it's getting to me so much at the moment. Dd is very distant. Had an awful experience at a local softplay this morning as she was just totally not with us. She usually loves it and is remarkably good at negotiating her way around but today spent the time breathing with a sort of 'hooting' noise as if she's about to hyperventilate and running in to walls. It's every since this last ear infection. DD does her own thing alot and that's the way it is but I think that day got to me particularly because it was literallly 9-7 with a sick ds clinging to my shoulder . Anyway, seeing the ENT specialist tomorrow so hopefully...

JakB, I know this is kind of 'off thread', but just read what you said about your dd at soft play. My ds had pneumonia a few months ago, and had antibiotics in hospital. He was totally off the wall for about a fortnight afterwards, the nursery were really worried about him and were asking me 'what happened?'. Gradually he came back, and after a few weeks he was back to his normal self. Hope your dd will be the same, good luck with the doc tomorrow.

JakB - sorry you are feeling down just now. I know how you are on the aimless thing - ds does a lot of running from one side of the room to the other a bit like a caged animal. Currently jumping on and off the sofa over and over, and dd is copying him...

How is your dd today?

JakB, hope DD is getting better, I'm sure the excessive stimming is related to illness and not having a repertoire of "leisure" skills. Something I've worked hard on over the last couple of years is finding out-of-school activities that suit DS. He stims much less when he is physically occupied although we laugh at him disappearing under the water when we go swimming as he is too busy hand flapping to swim! I have said that I will write a book called "Stimming Not Swimming" (as opposed to drowning not waving!). Its hard when you're doing a fulltime home prog though as we had enough to do without finding extra things for after sessions and I don't think he was ready for it until he was 6-7 yrs old. Maybe start to have a look round your local area to find out what is available and try things out slowly, it took me quite a while to sort out a reasonable programme of activities combined with just plain ol' stimming time at home!

OMG! Stimming Not Swimming is absolutely inspired! You have to write that book. I think you're absolutely right about it getting worse with illness and, of course, they haven't got 'leisure activities' to relax in to. I will definitely look in to local activities. When dd starts school I can get ds's childminder to have him so I can take her out a couple of times after school. She has been doing less physical stuff due to illness. SHe usually does lots of swimming, soft play etc. Anyway, we went to the ENT expert yesterday and THERE IS STILL A GROMMET HALF DISLODGED IN DD'S EAR! So that is part of the reason that her ear infections have been so virulent and gone on for so long. He has also suggested dd having her adenoids out as he thinks they are causing probs too. Does anybody know anybody whose child has had this done?
Onwards and upwards!!!

Jak - I had my adenoids out when I was about 6. They were just taken out as a matter of course after an ear infection. I had grommits too but I don't remember having any more ear problems after that. The only lasting thing is a slight deafness in one ear that I hardy notice. Can't say I miss my adenoids - not even sure what they do exactly!

Think they protect against infection during early infancy. Apparently, they are at their largest at 4, which makes sense in dd if they're getting constantly inflamed and infected. Think they can prevent the eustachian (spelling?!) tubes draining off properly. Anyway, think it will help so will probably go ahead. Only a minor op but she will have to stay overnight in hospital. I'm not very good at things like that with dd. Get all emotional! Hate general As

I'm rather suspicious of grommets and it seems they can cause more trouble than they solve. I really do think that a lot of children, particularly those who are autistic, are given grommets "just in case" and don't really need them, or maybe its more marginal than in many other cases.

Yeah, I agree. If I could turn the clock back, I wouldn't have gone through with them. We were at the 'oh she's just got a mild hearing loss due to glue ear' stage and thought grommets would change everything and her development would suddenly take off.

JakB - I have only just picked up this thread. Sorry that you have been so down and things with dd so difficult. Really hope they get better soon.

OMG - about the grommit being stuck in there! WTF! Lets hope that once it is removed your poor little dd doesn't have to cope with such horrid infections anymore.

Couldn't agree more Davros. Poor dd had to go under a general anaesthethic and guess what once they got in her ears no glue! Put the grommits in and she had nothing but trouble.

I ams till so angry about it as dd reacted really badly to it as well!

well second day of half term and I got so fed up of tripping over ds1 lying around moaning and shrieking (what he reverts to when even stimming bores him) that I picked up all 3 kids (all crying) shoved them in the car, plugged the ipod into the car stereo and spent the last 2 hours driving round Dartmoor (stunningly beautiful today). Ds2 and ds3 fell asleep and ds1 had a great time (loves the car). Shame we had to come home!

Sounds like a nice way to spend a couple of hours jimjams.
I had the joy of taking dd and ds shopping. It was so empty that they kept running around the shop. I was not impressed!

how funny, i also resorted to the car late morning and had a trip round regents park! ds not in good mood and dd stalking me.

Thanks Goodness I have finally passed my test! Sounds like I will definitely need the car when I have to do the 'half term' thing. DD booked in for removal of offending grommet (grommit?) and adenoids (as far as I can tell this is a pretty safe op? But if anybody knows differently do tell me) on March 31.

I think I may drive towards the sea today... (not into it ) Although bit worried that ds2 will start whinging about wanting to get out if he sees a beach.