Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

Showing posts with label CDD. Show all posts
Showing posts with label CDD. Show all posts

6/10/08

End Abuse of Children in Residential Programs: ACT TODAY!

I received this from ASAN and wanted to spread the word. Please call your Representative and urge them to support and vote yes on H.R. 5876!

Grassroots Action Needed for Approaching Vote

June 10, 2008-After swift approval by the House Education and Labor Committee
on May 22, The "Stop Child Abuse in Residential Programs for Teens Act of 2008"
(H.R. 5876) appears headed to the House floor for a vote next week.

The bill is a welcomed response to thousands of allegations of child abuse and
neglect at private residential programs (therapeutic boarding schools, wilderness
camps, boot camps and behavior modification facilities) for teens with emotional,
behavioral or mental health needs, reported by the Governmental Accountability
Office
(GAO).

Although some parents find such programs helpful, protections are needed
because too many children are being abused and nobody is watching. H. R. 5876
would make available information to help parents make informed choices about
their children's care in these placements.

H.R. 5876 was introduced on April 23 and is sponsored by committee chairman
George Miller (D-CA) and Representative Carolyn McCarthy (D-NY). It would:

  • Keep teens safe with new national standards for private residential programs.
  • Prevent deceptive marketing by requiring disclosure to parents of qualifications,
    roles and responsibilities of current staff and of substantiated reports of child
    abuse or violations of health and safety laws. Programs would also have to
    provide a link to or web address for information on all private residential programs
    kept by the U.S. Department of Health and Human Services (HHS).
  • Hold teen residential programs accountable for violating the law by requiring
    HHS to conduct unannounced site inspections at least every two years.
    Civil penalties up to $50,000 would be levied for every violation of the law and
    parents would have a federal right to sue program operators that violate the
    national standards.
  • Ask states to step in to protect teens in residential programs by providing grants
    to states that develop their own standards that are at least as strong as the
    national standards and inspect the programs in their state at least every two years.

Under Chairman Miller's leadership, this issue has garnered much-needed
attention. The Committee's website has links to testimony from an April 24
hearing, where the GAO and other experts testified and presented a follow-up
GAO report
.

Please Act Today!

Urge your Representative to support H.R. 5876 today and to vote yes when
the bill is considered on the House floor.

  • Call the Capitol switchboard at 202-224-3121 and ask for your Representative's
    office. You can also call your Representative's direct lines, available on his
    or her website through www.thomas.gov/

Now is the time to end abuse and neglect in private residential programs that are
intended to help teens with behavioral, emotional and mental health problems.

5/14/08

Ramblings this week...

The other day, I was flipping through the channels. I missed most of the interview (which, I can't say I was upset about!) with Deirdre Imus on Fox News. The banner on the bottom of the screen read, "Parents trace link between mercury in vaccines & autism." What they fail to mention in that headline, is that this link has no scientific basis. Once again, Mrs. Imus, just like Jenny and others, denies the possibility of a genetic link to autism. This perspective is somehow held onto by these people, despite real, hard evidence of various genes related to autism. Twin studies are very interesting to review. Here's what Deirdre had to say:

"...no such thing as a genetic epidemic & autism is an epidemic."

It was a brief piece, at least what I caught of it. What's unfortunate, is that Deirdre's irrational points, along with that ridiculous headline about a "link" between vaccines and autism, all got the last word. I was surprised the phone wasn't ringing, family and friends asking "did you see Don Imus' wife on T.V.?" Questions about the Omnibus cases, and also, I imagine, why the heck Mrs. Imus was involved with this debate. No one did call, so I assume they all, like I almost did, missed this brief snippet. One thing is for sure, the anti-vax message is spreading. For a while, it was found only on MSNBC, and then CNN, and now Fox. It's clear to see who has all the money--and what they are doing with it. Why ever would this elite bunch, with their cash cow organizations, want to actually help autistic people with the money they raise?

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Something I found strangely ironic, was a while after this autism-vaccine piece, the show featured a comedy troupe in the U.K. (doing a Facebook sketch). This troupe is called "Idiots of Ants," which when pronounced aloud is, "Idiot Savants." I imagine that no one at Fox News understands the irony. Well, based on statistics, perhaps at least one person on the production crew, in the back office, or in the studio got it, if their child is also autistic. The term "idiot savant" is no longer used, but was once how autistic savants (and in general, most savants) were referred to. Webster's defines "idiot savant" as
"a person affected with a mental disability (as autism or mental retardation) who exhibits exceptional skill or brilliance in some limited field (as mathematics or music) —called also savant"
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This thought came to me tonight, amidst all this autism-vaccine hubbub. What do the anti-vaxers have to say about Childhood Disintegrative Disorder? It was first documented in 1908. The fact that the symptoms and onset of CDD is very similar to regressive autism (age being the main differential), would make one wonder if they both have the same cause. Recently, there has been some written on autoimmune and environmental factors in CDD. However, since it has been affecting children since at least 1908 (and surely prior to a doctor identifying and naming it), one has to wonder if a vaccine link to CDD is truly feasible. Surely the children with CDD in the early 20th century were not vaccinated. Curious...to me at least.

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