Re: Re: What do you with free time?

[Guest guest]

Thanks Everyone

I'm hoping the paed will refer on to Maudsley Kath, really don't see why not, funding isn't an issue surely, biomed has saved that budget for years now!

Patience, we have been taking him for long walks but the minute we are in the door it's back to square one, he literally doesn't amuse himself for a second.

Mandi, yes, we are past experts at avoiding the good places on sunny days but there's still a fair amount of people around on cloudy days.

Ideally I would like some kind of provision on weekends throughout the year, something like a special needs youth club, but it would have to be for severe kids because the one I know of is SCOPE and they are less problematic logistically than , also whole different set of issues.

We also have a club on Saturdays for PMLD but must need a nurse ie medical needs, seems strange that doesn't it? Would have thought at least one weekend a month they could have dispensed with medical needs and provide something for our kids but then probably more to do with how much harder work that would be.

Vicky

Re: Re: What do you with free time?

Sent from my iPad

Hi Vicki

We also have great difficulty occupying Sophie. Unfortunately she is obsessed by food and her main interests are eating and cooking and searching the house for forbidden foods.She also has severe OCD which we have never been able to get a handle on.

I can't take her out on my own now she is too big and strong,and darn't take her out in the car alone (too many incidents) Even with help we can't go anywhere near shops.

We spend free time on weekends basically visiting various beaches, she loves watching waves.fortunately we live on the coast. She also likes visiting farms where she likes watching animals eat,she also likes washing the animals down with a hose pipe.(they do allow this at a local farm)

She will play for a short while on the I pad. We have downloaded various apps like dominos, glow draw. The WI has been a good buy, she likes watching just dance and can just about use the controller.She will watch music DVDs as long as she can control the tracks.She also likes watching dance exercise DVDs.Other mindless activities are playing with the hosepipe in the garden and digging in the soil (digging up the new bedding plants)

I can really empathise with all the worry about health. Sophie lurches from one bout of I'll health to another. Last year she had a spell that lasted for 4 months when she was pale lethargic, didn't sleep at all,OCD went thru the roof,she drank continuously.The paed was completely useless , didn't even want to do a blood test!

Kath

Sent from my iPad

We do zip wires (best on dull day less kids) ten pin bowling and swimming but only with mega slides now, he refuses to get out of car for a plain pool. He'll walk his carers dogs but is unimpressed with our rescue pup who won't give ball back.

If he is not doing any of this, he is watching youtube, eating, sleeping or seizing!

Mandi x

Hi Vicky,

Would he enjoy long, quiet country walks? Would you?!! I could show you some.

Patience

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> Probably no answer to this but what do you with your childs free time if they are very severely autistic?

> Finding has absolutely no interest in anything any more. He's happy to go for a drive in the car but not ecstatic or anything, just content, otherwise he will just sit in his room flicking the pages on books.

> He will allow a small amount of interaction from his brother but only rough and tumble and for a limited time, 10mins at most. He doesn't watch TV or Video, music can start to take him to rage, could be favoured track is over or who knows why? Not interested in old favourites like puzzles, will not allow teaching of new games which to be fair he hasn't moved up developmentally to enjoy anyway. Will play racing penguin on ipad for a fairly long period of time but wont be persuaded to play other ipad games and I don't want him doing that all day and all evening. Swimming isn't the fun it once was now he is a teenager, can't take him to public places aimed at younger children in case of rages, we had one yesterday out and about.

> Tried getting him to help with cooking, he didn't have the slightest interest. he seems very much in a huge regression to being unreachable, seems shakey, nervey, ticcing, stimming and OCD out of control.

> Very worried, waiting for paed to give us an appointment as we had gone to yearly last time because things were going very well but can't hang on now and GP can't do anything, CP have us on moving up the waiting list sooner although I absolutely do not believe we are, because already we are over the time for standard appointment. Isn't it marvellous when they assume mentally impaired child means parent believes anything.

> TIA

> Vicky

>

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[Guest guest]

thanks ....

Re: Re: What do you with free time?

try in the ikea the ekorre range for children and adolescents as most of the hanging items support a weight of 70 to 100 kg, they have a chair , a swing (traditional version), stairs, etc with the range also comes fixings loops to screw to wherever you want.

We have several items of the range as they are a reasonable price ranging from £20 to £30.

[Guest guest]

Thanks and all, I'm pretty sure that right now is in a bad place, have just filmed him being brought down for lunch and the ensuing nightmare, need to tape this stuff to show paed who will hopefully refer, don't think he can settle to anything.

I have a rage cycle, now need the tics and OCD which are just like Sydenhams or it's close cousin PANDA'S, he never had many play skills but with all this going on it's down to zero.

We do have a huge herpes sore on his mouth right now, having said that he has been going downhill for a while now.

Vicky

Re: What do you with free time?

Will he listen to audio books Vicky? We have played Harry Potter ones to Joe, dont know how much he takes in but is happy to sit and listen to them, if he didnt like them he would switch the cd off or leave the room

x

> >

> > Probably no answer to this but what do you with your childs free time if

> they are very severely autistic?

> > Finding has absolutely no interest in anything any more. He's happy

> to go for a drive in the car but not ecstatic or anything, just content,

> otherwise he will just sit in his room flicking the pages on books.

> > He will allow a small amount of interaction from his brother but only

> rough and tumble and for a limited time, 10mins at most. He doesn't watch TV

> or Video, music can start to take him to rage, could be favoured track is

> over or who knows why? Not interested in old favourites like puzzles, will

> not allow teaching of new games which to be fair he hasn't moved up

> developmentally to enjoy anyway. Will play racing penguin on ipad for a fairly long

> period of time but wont be persuaded to play other ipad games and I don't

> want him doing that all day and all evening. Swimming isn't the fun it once

> was now he is a teenager, can't take him to public places aimed at younger

> children in case of rages, we had one yesterday out and about.

> > Tried getting him to help with cooking, he didn't have the slightest

> interest. he seems very much in a huge regression to being unreachable, seems

> shakey, nervey, ticcing, stimming and OCD out of control.

> > Very worried, waiting for paed to give us an appointment as we had gone

> to yearly last time because things were going very well but can't hang on

> now and GP can't do anything, CP have us on moving up the waiting list

> sooner although I absolutely do not believe we are, because already we are over

> the time for standard appointment. Isn't it marvellous when they assume

> mentally impaired child means parent believes anything.

> > TIA

> > Vicky

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