Re: I can't believe this....

[Guest guest]

Rob,

States can't be compelled to pay for what doesn't exist.  Why would

they be in a hurry? 

Nothing hurries things along - at school or in the state government -

like someone in power having a close family member with autism.  Try to

find an elected official with some influence who has family with autism

and get him/her involved in speeding things up.  Or some important

person in the media who can make a fuss about the time they are taking. 

State governments do not want to be seen as discriminating against kids

with disabilities.

We've been lucky in Australia with most state governments and the

federal government moving fairly quickly on autism.  Not that there

aren't problems, but it is easier.  I applied for carers payment for

looking after my son.  The paediatrician wasn't sure he was bad enough

to warrant it, so we filled in accurately every section - about 30pages

- so they knew exactly how bad he was (or wasn't).  I got a letter back

in a few days saying that because my son had a diagnosis of aspergers

they didn't bother reading past the first page.  Of course, I only get

AU$106.70 a fortnight, so I guess I won't break the federal budget.  My

son still claims he is entitled to 50% because I wouldn't get it

without him.  Of course, without him I would have had a full-time job

many years ago, which sort of cancels things out.

On 29/05/2010 2:19 PM, Rob wrote:

 

I simply can not believe all the problems and frustration I am

having getting services for my child in the state of Alabama. It's

really unbelievable. I have found out that a Law was passed in my state

in 2008 to create a Task Force, and they have been doing research and

are supposed to report back to the State that there actually is

something called Autism that really does exist. Hopefully in three or

four years they will report their findings, and maybe then they will

recognize it. Are You kidding me??

[Guest guest]

Well, I certainly appreciate your advice, , but the problem in my state is that Aspergers is not recognized, and Autism by State Law here has the same definition as mental retardation. The Federal Government can't assist because they only regulate that states violate disabilities, but since Asperger's is not recognized in my state as a disability, and Autism has the same scores per the school guidelines as mental retardation, well the state isn't violating any laws because its not recognized as a disability....

From: Riley <klriley@...>Autism and Aspergers Treatment Sent: Sat, May 29, 2010 1:24:11 AMSubject: Re: I can't believe this....

Rob,States can't be compelled to pay for what doesn't exist. Why would they be in a hurry? Nothing hurries things along - at school or in the state government - like someone in power having a close family member with autism. Try to find an elected official with some influence who has family with autism and get him/her involved in speeding things up. Or some important person in the media who can make a fuss about the time they are taking. State governments do not want to be seen as discriminating against kids with disabilities.We've been lucky in Australia with most state governments and the federal government moving fairly quickly on autism. Not that there aren't problems, but it is easier. I applied for carers payment for looking after my son. The paediatrician wasn't sure he was bad enough to warrant it, so we filled in accurately every section - about 30pages - so they knew

exactly how bad he was (or wasn't). I got a letter back in a few days saying that because my son had a diagnosis of aspergers they didn't bother reading past the first page. Of course, I only get AU$106.70 a fortnight, so I guess I won't break the federal budget. My son still claims he is entitled to 50% because I wouldn't get it without him. Of course, without him I would have had a full-time job many years ago, which sort of cancels things out.On 29/05/2010 2:19 PM, Rob wrote:

I simply can not believe all the problems and frustration I am having getting services for my child in the state of Alabama. It's really unbelievable. I have found out that a Law was passed in my state in 2008 to create a Task Force, and they have been doing research and are supposed to report back to the State that there actually is something called Autism that really does exist. Hopefully in three or four years they will report their findings, and maybe then they will recognize it. Are You kidding me??

[Guest guest]

Perhaps the changes in the new version of the DSMV will help.  It

'autism' is used to cover the whole spectrum, equating it with mental

retardation will look dumber than it does now.  Unfortunately, you may

have to use political means to get politicians to change their minds. 

Recognising aspergers will cost them money, so somehow they have to be

persuaded that not recognising it will cost them more.  The autism and

aspergers groups in your state need to get more involved and make sure

that the politicians can't ignore the issue.  When Aspergers is

recognised in every country in the civilised world, it doesn't take 3-4

years to recognise it exists.

On 29/05/2010 4:32 PM, Rob West wrote:

 

Well, I certainly appreciate your advice, , but the problem

in my state is that Aspergers is not recognized, and Autism by State

Law here has the same definition as mental retardation. The Federal

Government can't assist because they only regulate that states  violate

disabilities, but since Asperger's is not recognized in my state as a

disability, and Autism has the same scores per the school guidelines as

mental retardation, well the state isn't violating any laws because its

not recognized as a disability....

From:

Riley <klrileyalphalink.au>

Autism and Aspergers Treatment

Sent: Sat, May 29,

2010 1:24:11 AM

Subject: Re:

I can't believe this....

 

Rob,

States can't be compelled to pay for what doesn't exist.  Why would

they be in a hurry? 

Nothing hurries things along - at school or in the state government -

like someone in power having a close family member with autism.  Try to

find an elected official with some influence who has family with autism

and get him/her involved in speeding things up.  Or some important

person in the media who can make a fuss about the time they are

taking.  State governments do not want to be seen as discriminating

against kids with disabilities.

We've been lucky in Australia with most state governments and the

federal government moving fairly quickly on autism.  Not that there

aren't problems, but it is easier.  I applied for carers payment for

looking after my son.  The paediatrician wasn't sure he was bad enough

to warrant it, so we filled in accurately every section - about 30pages

- so they knew exactly how bad he was (or wasn't).  I got a letter back

in a few days saying that because my son had a diagnosis of aspergers

they didn't bother reading past the first page.  Of course, I only get

AU$106.70 a fortnight, so I guess I won't break the federal budget.  My

son still claims he is entitled to 50% because I wouldn't get it

without him.  Of course, without him I would have had a full-time job

many years ago, which sort of cancels things out.

On 29/05/2010 2:19 PM, Rob wrote:

 

I simply can not believe all the problems and frustration I am

having getting services for my child in the state of Alabama. It's

really unbelievable. I have found out that a Law was passed in my state

in 2008 to create a Task Force, and they have been doing research and

are supposed to report back to the State that there actually is

something called Autism that really does exist. Hopefully in three or

four years they will report their findings, and maybe then they will

recognize it. Are You kidding me??

[Guest guest]

Lol u got a little business man on ur hands there. I don't get paid to care for my son but he has a para for school and a psycho-social group and I get respite care 1 or 2 times a week as neededSent via BlackBerry from T-MobileFrom: Riley <klriley@...>Date: Sat, 29 May 2010 16:24:11 +1000<Autism and Aspergers Treatment >Subject: Re: I can't believe this....Rob,States can't be compelled to pay for what doesn't exist.  Why wouldthey be in a hurry?  Nothing hurries things along - at school or in the state government -like someone in power having a close family member with autism.  Try tofind an elected official with some influence who has family with autismand get him/her involved in speeding things up.  Or some importantperson in the media who can make a fuss about the time they are taking. State governments do not want to be seen as discriminating against kidswith disabilities.We've been lucky in Australia with most state governments and thefederal government moving fairly quickly on autism.  Not that therearen't problems, but it is easier.  I applied for carers payment forlooking after my son.  The paediatrician wasn't sure he was bad enoughto warrant it, so we filled in accurately every section - about 30pages- so they knew exactly how bad he was (or wasn't).  I got a letter backin a few days saying that because my son had a diagnosis of aspergersthey didn't bother reading past the first page.  Of course, I only getAU$106.70 a fortnight, so I guess I won't break the federal budget.  Myson still claims he is entitled to 50% because I wouldn't get itwithout him.  Of course, without him I would have had a full-time jobmany years ago, which sort of cancels things out.On 29/05/2010 2:19 PM, Rob wrote: I simply can not believe all the problems and frustration I amhaving getting services for my child in the state of Alabama. It'sreally unbelievable. I have found out that a Law was passed in my statein 2008 to create a Task Force, and they have been doing research andare supposed to report back to the State that there actually issomething called Autism that really does exist. Hopefully in three orfour years they will report their findings, and maybe then they willrecognize it. Are You kidding me??

[Guest guest]

I agree with . I need to move to Alabama and teach em what autisim is heheheSent via BlackBerry from T-MobileFrom: Riley <klriley@...>Date: Sat, 29 May 2010 16:44:59 +1000<Autism and Aspergers Treatment >Subject: Re: I can't believe this....Perhaps the changes in the new version of the DSMV will help.  It'autism' is used to cover the whole spectrum, equating it with mentalretardation will look dumber than it does now.  Unfortunately, you mayhave to use political means to get politicians to change their minds. Recognising aspergers will cost them money, so somehow they have to bepersuaded that not recognising it will cost them more.  The autism andaspergers groups in your state need to get more involved and make surethat the politicians can't ignore the issue.  When Aspergers isrecognised in every country in the civilised world, it doesn't take 3-4years to recognise it exists.On 29/05/2010 4:32 PM, Rob West wrote: Well, I certainly appreciate your advice, , but the problemin my state is that Aspergers is not recognized, and Autism by StateLaw here has the same definition as mental retardation. The FederalGovernment can't assist because they only regulate that states  violatedisabilities, but since Asperger's is not recognized in my state as adisability, and Autism has the same scores per the school guidelines asmental retardation, well the state isn't violating any laws because itsnot recognized as a disability....From: Riley <klrileyalphalink.au>Autism and Aspergers Treatment Sent: Sat, May 29,2010 1:24:11 AMSubject: Re: I can't believe this.... Rob,States can't be compelled to pay for what doesn't exist.  Why wouldthey be in a hurry?  Nothing hurries things along - at school or in the state government -like someone in power having a close family member with autism.  Try tofind an elected official with some influence who has family with autismand get him/her involved in speeding things up.  Or some importantperson in the media who can make a fuss about the time they aretaking.  State governments do not want to be seen as discriminatingagainst kids with disabilities.We've been lucky in Australia with most state governments and thefederal government moving fairly quickly on autism.  Not that therearen't problems, but it is easier.  I applied for carers payment forlooking after my son.  The paediatrician wasn't sure he was bad enoughto warrant it, so we filled in accurately every section - about 30pages- so they knew exactly how bad he was (or wasn't).  I got a letter backin a few days saying that because my son had a diagnosis of aspergersthey didn't bother reading past the first page.  Of course, I only getAU$106.70 a fortnight, so I guess I won't break the federal budget.  Myson still claims he is entitled to 50% because I wouldn't get itwithout him.  Of course, without him I would have had a full-time jobmany years ago, which sort of cancels things out.On 29/05/2010 2:19 PM, Rob wrote:  I simply can not believe all the problems and frustration I amhaving getting services for my child in the state of Alabama. It'sreally unbelievable. I have found out that a Law was passed in my statein 2008 to create a Task Force, and they have been doing research andare supposed to report back to the State that there actually issomething called Autism that really does exist. Hopefully in three orfour years they will report their findings, and maybe then they willrecognize it. Are You kidding me??

[Guest guest]

Our daughter was recently diagnosed with aspergers after being misdiagnosed 22 years ago as mentally retarded. She is very verbal, and at the appointment, she looked right at the specialist and said I am not retarded. I realize back in 1988, the doctors didn't know a whole lot about diagnosing autism and aspergers and she was misdiagnosed by a Pediatric Neurologist at Boston Childrens Hospital. Imagine our shock when the specialist said your daughter is mentally retarded and will probably never be able to walk or talk or be able to do much of anything. My husband and I were very scared, but I was determined to do whatever it took to help her. Just an FYI, I had no complications during my pregnancy, ate very healthy, exercised daily and worked up until the day before

she was born. My OB said she was going to be a big baby if I let my pregnancy go any longer (8 pounds) and that I should consider having my water broke if I didn't go naturally, he was the doctor and I was a soon to be new mom. So I went in a week earlier than my due date and had my water broke, no progress after 4 hours so he induced with pytocin and all hell broke loose for 4 hours but no progress. She was born by cesarean section and was only 6 pounds 5 1/2 ounces, 19 inches long. At 3 months of age started having seizures called infantile spasms and at her worst 60 seizures a day. We gave her clonopin and depakene syrup to no avail as she was a zombie, skin layer biopsy for cause of seizures, nothing revealed. We then tried ACTH (acorticitropin, steroid) injections in her thighs, every other day for 3 months and she was seizure free for about 1 week and then the seizures started all over again and we did another course

of shots for 2 1/2 months with success. She had been seizure free for 19 years. Our daughter exhibited the typical quirks of a child with autism, but no professionals challenged the diagnosis. I myself didn't know a lot about autism, however I was given a book to read called, "The Sound of a Miracle", by belle Stehli about her daughter Georgieanna Stehli which open up my eyes to the possibility that my daughter had autism. So many similarities to the child in the book, stimming, sensitivity to sound, light, touch, loved to stare at spinning objects such as a ceiling fan and toys that spun, not aware of her surroundings, oblivious to voices, in her own little world. In our first apartment our bathroom was located in the middle of the apartment and I'd have to put my hands over her ears and close the door whenever her dad mowed the lawn. She had a lot of special education supports such as P.T.(therapuetic brushing, joint

compressions, samonas sound therapy), O.T.(fine motor skills) and Speech Therapy "see mama" for eye contact) and I have to say to all moms and dads out there how crucial follow through is at home for these. It takes time but this is not about you, it's about whats best for your child and how you can help them be the best they can be in our world. Our daughter is a walking, talking, dancing, singing, working young lady and still does have sensitivity to light and sound, but I feel strongly that the therapy I did at home helped her be who she is today. You'd never know she had any problems. One of her P.T.'s from elementary school calls her an over achiever as she had such a slow start. It takes a focused team to help your child, remove the garbage and the things you cannot change and move on to help your child. Life is tough for all of us, walk a mile in their shoes. Enough said, thanks for your time. Rhoda

L. Forrest, SLP-A From: Riley <klriley@...>Autism and Aspergers Treatment Sent: Sat, May 29, 2010 2:44:59 AMSubject: Re: I can't believe this....

Perhaps the changes in the new version of the DSMV will help. It

'autism' is used to cover the whole spectrum, equating it with mental

retardation will look dumber than it does now. Unfortunately, you may

have to use political means to get politicians to change their minds.

Recognising aspergers will cost them money, so somehow they have to be

persuaded that not recognising it will cost them more. The autism and

aspergers groups in your state need to get more involved and make sure

that the politicians can't ignore the issue. When Aspergers is

recognised in every country in the civilised world, it doesn't take 3-4

years to recognise it exists.

On 29/05/2010 4:32 PM, Rob West wrote:

Well, I certainly appreciate your advice, , but the problem

in my state is that Aspergers is not recognized, and Autism by State

Law here has the same definition as mental retardation. The Federal

Government can't assist because they only regulate that states violate

disabilities, but since Asperger's is not recognized in my state as a

disability, and Autism has the same scores per the school guidelines as

mental retardation, well the state isn't violating any laws because its

not recognized as a disability.. ..

From:

Riley <klrileyalphalink (DOT) com.au>

Autism and Aspergers Treatment

Sent: Sat, May 29,

2010 1:24:11 AM

Subject: Re:

I can't believe this....

Rob,

States can't be compelled to pay for what doesn't exist. Why would

they be in a hurry?

Nothing hurries things along - at school or in the state government -

like someone in power having a close family member with autism. Try to

find an elected official with some influence who has family with autism

and get him/her involved in speeding things up. Or some important

person in the media who can make a fuss about the time they are

taking. State governments do not want to be seen as discriminating

against kids with disabilities.

We've been lucky in Australia with most state governments and the

federal government moving fairly quickly on autism. Not that there

aren't problems, but it is easier. I applied for carers payment for

looking after my son. The paediatrician wasn't sure he was bad enough

to warrant it, so we filled in accurately every section - about 30pages

- so they knew exactly how bad he was (or wasn't). I got a letter back

in a few days saying that because my son had a diagnosis of aspergers

they didn't bother reading past the first page. Of course, I only get

AU$106.70 a fortnight, so I guess I won't break the federal budget. My

son still claims he is entitled to 50% because I wouldn't get it

without him. Of course, without him I would have had a full-time job

many years ago, which sort of cancels things out.

On 29/05/2010 2:19 PM, Rob wrote:

I simply can not believe all the problems and frustration I am

having getting services for my child in the state of Alabama. It's

really unbelievable. I have found out that a Law was passed in my state

in 2008 to create a Task Force, and they have been doing research and

are supposed to report back to the State that there actually is

something called Autism that really does exist. Hopefully in three or

four years they will report their findings, and maybe then they will

recognize it. Are You kidding me??