Re: What do you with free time?

[Guest guest]

Hi Vicky,

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

Patience

>

> 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

>

[Guest guest]

Hi Vicky,

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

Patience

>

> 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

>

[Guest guest]

Hi Vicky,

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

Patience

>

> 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

>

[Guest guest]

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

[Guest guest]

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

[Guest guest]

Hi VickiWe 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!KathSent from my iPadOn 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Hi VickiWe 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!KathSent from my iPadOn 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Hi VickiWe 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!KathSent from my iPadOn 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Sent from my iPadOn 3 Apr 2012, at 13:11, Kath <butler39@...> wrote:Hi VickiWe 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!KathSent from my iPadOn 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Sent from my iPadOn 3 Apr 2012, at 13:11, Kath <butler39@...> wrote:Hi VickiWe 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!KathSent from my iPadOn 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

We recently put a swing inside our house, so whenever he needed he will go on

that and relax, recently he has started taking books and looking. He can't read

and he is still non-verbal.

I do take him to the park on weekends very early and it has helped him a lot, he

likes going out all the time, he doesnt engage with anything at home.

If your child has sensory issues,email me the issues, I know very good OT, so

she may give you some advice to help and keep him engaged.

> >

> > 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

> >

>

>

>

>

>

>

>

>

> =

>

[Guest guest]

We recently put a swing inside our house, so whenever he needed he will go on

that and relax, recently he has started taking books and looking. He can't read

and he is still non-verbal.

I do take him to the park on weekends very early and it has helped him a lot, he

likes going out all the time, he doesnt engage with anything at home.

If your child has sensory issues,email me the issues, I know very good OT, so

she may give you some advice to help and keep him engaged.

> >

> > 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

> >

>

>

>

>

>

>

>

>

> =

>

[Guest guest]

We recently put a swing inside our house, so whenever he needed he will go on

that and relax, recently he has started taking books and looking. He can't read

and he is still non-verbal.

I do take him to the park on weekends very early and it has helped him a lot, he

likes going out all the time, he doesnt engage with anything at home.

If your child has sensory issues,email me the issues, I know very good OT, so

she may give you some advice to help and keep him engaged.

> >

> > 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

> >

>

>

>

>

>

>

>

>

> =

>

[Guest guest]

would love to know what kind of swing you managed to get for indoor use. My dd would love one of these, as she spends all summer on the one outside.

Re: What do you with free time?

We recently put a swing inside our house, so whenever he needed he will go on that and relax, recently he has started taking books and looking. He can't read and he is still non-verbal.I do take him to the park on weekends very early and it has helped him a lot, he likes going out all the time, he doesnt engage with anything at home. If your child has sensory issues,email me the issues, I know very good OT, so she may give you some advice to help and keep him engaged.> >> > 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> >> > > > > > > > > =>

[Guest guest]

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]

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]

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]

Forgot that we have special needs Youth Club, he goes 2 hours on a Friday night, it was formed and run by a mum of AS child, she does 2 sessions of 4 hours each week of school hols also. She had to fight tooth and nail to get any funding out of short breaks because most of the money goes to those Artz type things, when what she offers costs so much less.

http://www.gimmeabreakdorset.org/

Mandi x

In a message dated 03/04/2012 14:11:32 GMT Daylight Time, MaddiganV@... writes:

Thanks EveryoneI'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

On 3 Apr 2012, at 13:11, Kath <butler39@...> wrote:

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!

KathSent from my iPad

On 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Forgot that we have special needs Youth Club, he goes 2 hours on a Friday night, it was formed and run by a mum of AS child, she does 2 sessions of 4 hours each week of school hols also. She had to fight tooth and nail to get any funding out of short breaks because most of the money goes to those Artz type things, when what she offers costs so much less.

http://www.gimmeabreakdorset.org/

Mandi x

In a message dated 03/04/2012 14:11:32 GMT Daylight Time, MaddiganV@... writes:

Thanks EveryoneI'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

On 3 Apr 2012, at 13:11, Kath <butler39@...> wrote:

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!

KathSent from my iPad

On 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Forgot that we have special needs Youth Club, he goes 2 hours on a Friday night, it was formed and run by a mum of AS child, she does 2 sessions of 4 hours each week of school hols also. She had to fight tooth and nail to get any funding out of short breaks because most of the money goes to those Artz type things, when what she offers costs so much less.

http://www.gimmeabreakdorset.org/

Mandi x

In a message dated 03/04/2012 14:11:32 GMT Daylight Time, MaddiganV@... writes:

Thanks EveryoneI'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

On 3 Apr 2012, at 13:11, Kath <butler39@...> wrote:

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!

KathSent from my iPad

On 3 Apr 2012, at 12:36, Mum231ASD@... wrote:

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

In a message dated 03/04/2012 12:32:21 GMT Daylight Time, onthesosh@... writes:

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

=

[Guest guest]

Hi Vicky,

Why not contact autism anglia - after all they're our local autism charity and

they collect money to help families, or so they say......

http://www.autism-anglia.org.uk/services/family_support.htm

They have a psychologist and a day/training centre in Dereham. Maybe they need

to be given a few ideas of how they can make good use of them!

Patience

> >

> > 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

> >

>

>

>

>

>

>

>

>

>

>

>

>

> =

>

[Guest guest]

http://item.mobileweb.ebay.com/viewitem?itemId=170594204278

This is the one we have got, we have converted our garage to a play room and put

two hooks. I got it from india for 4 pounds from an exhibition.

You can also get a rope ladder and they can swing and climb indoor. ( climbing

rope has reduced my son' s flapping and jumping a lot. Ours broken now need to

get another one soon.

Regards

Jabeen

> > >

> > > 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

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> > =

> >

>