Re: Vicky - OT

[Guest guest]

Di, I didn't go to PCT directly I did it through school and paed, remember this is my older son who is HFA not youngest severe boy.

I had just succeeded in getting him a place at an independent day school for Aspergers Syndrome, so the solicitor was probably fresh in their minds.

It started with statement review and IEP, I insisted needed OT in order to progress, from there I made numerous appointments and phone calls to paed on how much his lack of O.T. was impacting on his life, I told of night terrors, and at one point school even had him on a wrist strap when out and about, I reported continual accidents, etc.

None of this is through the normal legal channels but within a couple of months I had ground them down and O.T. was visiting him in school, she would work with him in sessions and also gave home exercises for us to do, was well worth the fight.

I have to be dead blunt here, like everyone else we have all these darned rules and stuff my experience has always been if you need something for your child you have to make an individual crusade that without it your child will never progress and infact will actually suffer, you need to push them in a corner, I have threatened to go to the newspapers and local T.V. I always ask them to put in writing why they will not provide X for this disabled child, about 7 times out of 10 what I ask for becomes available, and then I get it in writing, even if it isn't as much as I want continuing battling for more after the official "yes".

was the only child in his school receiving O.T. my belief is because I was the biggest pain in the rear, get paed onside, if need be ask paed to put on dx child is dyspraxic, autism is an umbrella term.

Vicky

[Guest guest]

In a message dated 13/04/2006 16:50:08 GMT Daylight Time, m_d33@... writes:

You mentioned that you had to fight to get OT, how did you eventually get it? Our PCT have exclusion criteria on their OT service and autistic spectrum disorder is one of the exclusions.

>>>Can you use the disability discrimination act on that one? I think it must be unlawful to exclude apopulation with disability surely?

Mandi x

[Guest guest]

Hi Vicky,

You mentioned that you had to fight to get OT, how did you eventually get it? Our PCT have exclusion criteria on their OT service and autistic spectrum disorder is one of the exclusions. I can get OT for my daughter, but only because I told them her diagnosis was PDD-NOS and got the school senco to say the same. I've tried my MP, who just sent me a list of the exclusion criteria (very useful!) and I've tried to contact someone at the PCT who I've been told to speak to but she's never there. I've left messages but they're obviously not getting through or she's ignoring them. Apparently, our PCT is going to amalgamate at some point in the future to the County Durham PCT (at the moment there are 5 district PCT's, our's being the one with the exclusion criteria, typical!), that will probably sort out the problem, but that could be years away. I'm currently spending in the region of £300 per month on supplements and biomed, so paying for OT isn't an option either. Have you got any advice?

Diane

Re: gmtv wed am

My oldest son who has HFA with dyslexia and mild dyspraxia had a whole set of exercises from O.T. a few yrs ago, not quite the same as these, didn't involve toothbrushes or closing eyes, but they were very effective, and diet we already knew about, so wondering if a good O.T. could not achieve the same sort of results.

My youngest would never in a million years co-operate with these exercises, but then he has absolutely no dyspraxia and could walk a tight rope over the Grand Canyon!

Would defnitely save money if all the kids could get to see an O.T. we had to push for that here, but got it in the end.

Vicky

[Guest guest]

DI

is in mainstream but they have an SEN base too. Our OT has visited there in the past but hasnt done nearly enough with Becky who has huge sensory needs.

This debate might just stor me into action on this one.

Love Caroline

xx

[Guest guest]

Thanks Vicky,

Could you not have OT for , or have you not gone there yet with him? I managed to get OT for my older HFA daughter, but not for my ASD son, who has lots of sensory problems that impact on his life a lot. In fact, now his bowel problems have been sorted by (hurrah!!) that is his biggest problem. At the moment, I'm desperately trying to find a shop that sells jeans without the adjustable waistband inside, because he can't tolerate it. After staying virtually the same height for years, he has just shot up by an inch and a half in about 5 weeks, so he's grown out of most of his clothes, we're washing and drying the same pair of jeans continually for him. He's also terrified of balloons and fireworks, etc. I really need sensory integration, but I want an OT assessment for him at least.

Thank you

Diane

Re: Vicky - OT

Di, I didn't go to PCT directly I did it through school and paed, remember this is my older son who is HFA not youngest severe boy.

I had just succeeded in getting him a place at an independent day school for Aspergers Syndrome, so the solicitor was probably fresh in their minds.

It started with statement review and IEP, I insisted needed OT in order to progress, from there I made numerous appointments and phone calls to paed on how much his lack of O.T. was impacting on his life, I told of night terrors, and at one point school even had him on a wrist strap when out and about, I reported continual accidents, etc.

None of this is through the normal legal channels but within a couple of months I had ground them down and O.T. was visiting him in school, she would work with him in sessions and also gave home exercises for us to do, was well worth the fight.

I have to be dead blunt here, like everyone else we have all these darned rules and stuff my experience has always been if you need something for your child you have to make an individual crusade that without it your child will never progress and infact will actually suffer, you need to push them in a corner, I have threatened to go to the newspapers and local T.V. I always ask them to put in writing why they will not provide X for this disabled child, about 7 times out of 10 what I ask for becomes available, and then I get it in writing, even if it isn't as much as I want continuing battling for more after the official "yes".

was the only child in his school receiving O.T. my belief is because I was the biggest pain in the rear, get paed onside, if need be ask paed to put on dx child is dyspraxic, autism is an umbrella term.

Vicky

[Guest guest]

My oldest is in mainstream now, I kept him in the AS school long enough to get his confidence back, he is in the LSU attached, they have so many outreach workers going in for all manner of issues, it's a fanatastic placement for my boy, he has done so well.

Vicky

[Guest guest]

Di I don't rememger how old your child is but I also managed to get OT via the Statement of Educational Needs, we went to tribunal using an independant OT report, our PCT also actively avoided giving OT to ASD kids but it was unwritten rule. 2 parents at the same special school went to tribunal at the same time so the school now has OT regularly advising the school. The Head was delighted we did it. I think education seems the easier route to get these things (ie SLT and OT) as at least there is a well used and prescribed process even if it is slow. You don't need to wait until child is school age to start the statement process, but i found that a decent independant OT report helped a lot as the LEA did not have any reports so ours was the definitive version ditto for SLT. The important thing is insuring the OT is trained in sensory integration as not all peadiatric OTs are trained for this.

Where I live the good ones are all Australian or South African!! HTH

[Guest guest]

Hi ,

is 7, but he is in mainstream at the moment with 100% support. I don't think OT's go into mainstream schools, unless anyone knows different.

Diane

Re: Vicky - OT

Di

I don't rememger how old your child is but I also managed to get OT via the Statement of Educational Needs, we went to tribunal using an independant OT report, our PCT also actively avoided giving OT to ASD kids but it was unwritten rule. 2 parents at the same special school went to tribunal at the same time so the school now has OT regularly advising the school. The Head was delighted we did it. I think education seems the easier route to get these things (ie SLT and OT) as at least there is a well used and prescribed process even if it is slow.

You don't need to wait until child is school age to start the statement process, but i found that a decent independant OT report helped a lot as the LEA did not have any reports so ours was the definitive version ditto for SLT. The important thing is insuring the OT is trained in sensory integration as not all peadiatric OTs are trained for this. Where I live the good ones are all Australian or South African!!

HTH

[Guest guest]

We have an OT - new to us - who has just devised some stretching and

pulling exercises that Tom thinks are fantastic. It helps that she's

blonde and very pretty (he's not daft) but he loves being pulled

arms and legs quite firmly and squeezed. She also recommended the

kind of environment in which he's more likely to feed himself (which

he can do, but doesn't) and she was right. He likes absolute quiet

when he eats (he'll have to move out). So we've found OT really

helpful

steph

>

> Hi Vicky,

> You mentioned that you had to fight to get OT, how did

you eventually get it? Our PCT have exclusion criteria on their OT

service and autistic spectrum disorder is one of the exclusions. I

can get OT for my daughter, but only because I told them her

diagnosis was PDD-NOS and got the school senco to say the same. I've

tried my MP, who just sent me a list of the exclusion criteria (very

useful!) and I've tried to contact someone at the PCT who I've been

told to speak to but she's never there. I've left messages but

they're obviously not getting through or she's ignoring them.

Apparently, our PCT is going to amalgamate at some point in the

future to the County Durham PCT (at the moment there are 5 district

PCT's, our's being the one with the exclusion criteria, typical!),

that will probably sort out the problem, but that could be years

away. I'm currently spending in the region of £300 per month on

supplements and biomed, so paying for OT isn't an option either.

Have you got any advice?

>

> Diane

> Re: gmtv wed am

>

>

> My oldest son who has HFA with dyslexia and mild dyspraxia had a

whole set of exercises from O.T. a few yrs ago, not quite the same

as these, didn't involve toothbrushes or closing eyes, but they were

very effective, and diet we already knew about, so wondering if a

good O.T. could not achieve the same sort of results.

> My youngest would never in a million years co-operate with these

exercises, but then he has absolutely no dyspraxia and could walk a

tight rope over the Grand Canyon!

> Would defnitely save money if all the kids could get to see an

O.T. we had to push for that here, but got it in the end.

> Vicky

>

>

> DISCLAIMER

> No information contained in this post is to be construed as

medical advice. If you need medical advice, please seek it from a

suitably qualified practitioner.

>

>

>

>

>

[Guest guest]

I thought of that too, and might well go down that route if I don't get anywhere with the woman at the PCT. Our local autism support group campaigned to get the criteria lifted in one of the regional PCT's, but there's only me in our region who is actually bothered that OT isn't provided, and there are 8 autistic children just in our little village!

Diane

Re: Vicky - OT

In a message dated 13/04/2006 16:50:08 GMT Daylight Time, m_d33@... writes:

You mentioned that you had to fight to get OT, how did you eventually get it? Our PCT have exclusion criteria on their OT service and autistic spectrum disorder is one of the exclusions.

>>>Can you use the disability discrimination act on that one? I think it must be unlawful to exclude apopulation with disability surely?

Mandi x

[Guest guest]

I know of an OT who goes to mainstream in our borough, alot of the exercises don't require much special equipment etc. but the quality of the OT is paramount and phrases like "suitably qualified paediatric OT experienced in working with children with autism" is important on the statement. The OT would train the support to do exercises etc. so frequent visits are required to properly supervise. Statements are about the child's needs not what suits the local LEA. Rant Over! Diane McGregor <m_d33@...> wrote: Hi , is 7, but he is in

mainstream at the moment with 100% support. I don't think OT's go into mainstream schools, unless anyone knows different. Diane Re: Vicky - OT Di I don't rememger how old your child is but I also managed to get OT via the Statement of Educational Needs, we went to tribunal using an independant OT report, our PCT also actively avoided giving OT to ASD kids but it was unwritten rule. 2 parents at the same special school went to tribunal at the same time so the school now has OT regularly advising the school. The Head was delighted we did it. I think education seems the easier route to get these things (ie SLT and OT) as at least there is a well used and prescribed process even if it is slow. You don't need to wait until child is school age to start the statement process, but i found that a decent independant OT report helped a lot as the LEA did not have any reports so ours was the definitive version ditto for SLT. The important thing is insuring the OT is trained in sensory integration as not all peadiatric OTs

are trained for this. Where I live the good ones are all Australian or South African!! HTH

[Guest guest]

That's great. will be 11 in September and will be going to a special school with only 70 kids in the whole school. In her mock SATS, she scored a 5 in science and a 4 in maths, both her favourite subjects, and she can apparently attend the nearby comp with 1 to 1 support to sit GCSE's. I don't know how it's going to work out, but she really likes the school and was treated 'like a grown-up' by the headmistress so she's looking forward to starting there.

Diane

Re: Vicky - OT

My oldest is in mainstream now, I kept him in the AS school long enough to get his confidence back, he is in the LSU attached, they have so many outreach workers going in for all manner of issues, it's a fanatastic placement for my boy, he has done so well.

Vicky