Story Idea-Aspergers/awareness

This person wants more coverage of awareness of the spectrum. This item was emailed to this blog--AR


The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.

I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!

I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.

He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.

His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!

Thank for listening - MM, Kansas

Story Ideas-Costs

This posting was submitted from a father who wants coverage on costs. This item was emailed to this on this blog--AR

Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:

• The cost to school systems and the local battles that ensue for parents to get the services that their children need vs budgetary constraints
• The cost of therapies for children for Applied Behavioral Analysis, Speech, Occupational, sometimes physical therapies
• The insurance battles to get these therapies covered.
• The run around that parents get between schools and/or insurance companies to have therapies covered. Therapies are often classified as educational and are denied by insurance on that basis (therapies should be done by the schools, they say). Non-restorative is the term often used by insurance saying that these children never had speech and that therefore speech is not covered because you are not trying to 'recover' speech already lost. ABA therapies are deemed 'experimental' by insurance even though it is probably one of the main strategies employed to help autistic children. Occupational therapies are not recognized as therapies for autism because of the aforementioned non restorative and because they can take many months to years to see benefits (occupational should be used to restore from 'injuries', insurance says)
• The financial devastation families go through getting their children the therapies they need and don't get within the school system or covered by insurance. I love to know the bankruptcy figures for families with autistic children
• The 'cost' of mainstreaming adult autistics; what is being done vs what COULD be done. Many of these adults may be 'underemployed' because of their 'social' disability; they may be competent and able, but may make potential employers uncomfortable.

You can see the potential for story lines here; the day to day financial and time management struggles that most families with autistics go through are an underreported and much needed story to be told.

If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")


Thank for your attention to the autism issue,

William Kuhles

Chelation Therapy

Hi everyone. My name is Robert Kessler, I'm working as a research assistant on the series. I am researching specifically chelation therapy. If you have any experience with or knowledge about chelation therapy, I'd love to hear about it. I'm just looking for anything you've got: what age is best to start, different types, which method of administering is better, anything. I would also like to know about bio meds. I want to make sure that my knowledge of chelation therapy is as complete as it could possibly be. Thank you for taking your time to share your experience and/or knowledge with me.

Story Idea- Therapy

This posting was emailed to this blog---AR

Hello:

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E-mail: myDTconsultant@aol.com
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