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.

Autism: The Musical

I watched it tonight on HBO. Well, actually I just got done watching it on my DVR. If not for that, I'd never catch a show on television (other than what my daughters choose!). Just before the "opening night" in the film, my daughter started screaming. I went to her room, she was screaming over something I wasn't able to make sense of. I picked her up and she settled down. I brought her into the living room, continued watching Autism: The Musical. She rested beside me, and fell back asleep. Just as the movie was ending, she says, "that was good movie." I guess she heard the audience applaud, and figured it must be good! She then went on to talk about a "pop" that "boke" (she unexpectedly got to the tootsie part of a tootsie pop the other day, it quite disturbed her!). This morning, she woke up screaming over her trike that needs some repairs. I'm always amazed at how much is going through her mind, at all times. I digress, back to the film (little one is now back to sleep in her room--for now)

I loved a lot about the film, there were some parent's views I disagreed with (what else is new). I'm at the point where I am well aware that I won't agree with all the people all the time. I've even reached a stage where I don't care so much what someone else's views are, so long as their concerns and goals are in tune with mine. I am more than willing to work with someone who blames vaccines for their child's autism, IF we are working to get say, a vocational program for adult autistics. We can all have our various beliefs, so long as we are moving forward, with our child's future being the utmost concern. I was able to watch this film, and appreciate it as a whole--even with the few sound bites I'd prefer not be a part of it. All in all, I felt it was an upbeat movie, one that celebrated autism (in its many forms!). It was wonderful to see so much of the spectrum depicted--verbal and nonverbal, asperger's and classic autism, boys and girls, many snapshots of autism.

I also liked that a recurring theme was the future for our children, what opportunities and services they may (or may not) have available to them. Hopefully, it can serve as a stepping stone for more of us to come together, to change our children's futures. There were a few absolutely wonderful moments in the movie, and I appreciated the rawness of the parent's emotions (without being dark and disturbing ala that other Autism "documentary"). I applaud the children and their families, who essentially went where others had never dared gone before. I have deep respect for Elaine Hall, who with humor and bravery followed through on her dream. Honestly--who would believe that a single mom could pull together a group of children (did I mention they are autistic?), and in six months have them perform in a musical?

According to their website, The Miracle Project (which will at some point have information on nutrition and education, something I may be weary of, we shall see) is planning on branching out to different cities. Right now, you can buy various packages (script, music, etc.) to put on your own "Autism: The Musical." I would be delighted to see such a program available to my daughter in the years to come. I think other projects involving art and music would also be wonderful as well; they could prove to be very beneficial to autistic teens. I am going to bed tonight, feeling a bit more positive about the future of autistics. If one person can create a program like The Miracle Project, and make such an impact--what can the rest of us do?

Communication: More Than Just Spoken Words!

"Not being able to speak is not the same thing as having nothing to say."

I really wish everyone would read this quote & really take the time to understand and accept it. I'm saddened by the amount of parents I come in contact with who are desperately hopeless because their child is nonverbal. They presume therefore all sorts of terrible things. One is that their child is not capable of much, including ideas or opinions. The other is that their child will ultimately be institutionalized. Another is that their child is unaware of what's going on around them, what is said about them, and also what is written about them.

So many people honestly think that if someone cannot speak, then there is nothing go on inside. They also assume that if someone walks around grunting or stimming or twitching, that they can't possibly be thinking of much. So many of these parents are tragically ignorant, and most aren't willing to open their eyes to this. They would prefer, I think, there not be a possibility that their child or the autistic adult is capable of higher thinking.

I hear time & time again, parents saying "if only I could hear him say 'mama'" or "it breaks my heart that she won't say 'I love you.'" I feel for them, I do. Before my daughter had words, I remember falling into that belief, that if she couldn't speak or say "mommy" that we just wouldn't be able to connect. Our neurologist is amazing & early on, he recommended sign language. We used sign language & picture cards. I yearned to hear my daughter say "ma." I thought that would be the most amazing thing. I was wrong. The day my daughter signed "daddy" was one of the most wonderful things ever. A few weeks later, she would sign "mommy" and then further down the road, it was "I love you." Seeing those signs, that was so beautiful. Those personal experiences, really made a permanent impression in my mind on this whole nonverbal issue. Being nonverbal, does not mean a child or adult doesn't have thoughts, feelings, or desires.

Parents are so close-minded to what communication really means. Often, they seem to take personal offense if their child cannot verbally communicate. They feel a 'normal' parent-child bond or connection can never be achieved because of this. Verbal speech is not the end all be all for communication--far from it. In this day in age, with technology, the options are seemingly endless. PECS cards, ASL, laptops, writing boards, etc. While our daughter is now verbal, she still uses PECS & signs, and I imagine when she gets a bit older, she'll use typing quite often too, as a form of communication. I'm excited for that. Speaking is very difficult for her, she tires easily, and is often very hard to understand. So, I'm excited for when she will have yet another option for communication, and I can't wait to 'hear' all she has to 'say.'