On a trip to New York City this week, we visited The Jekyll and Hyde Club.  Touted as family fun, the place was over-stimulation city.  We didn’t have a lot of problems, other than when the Zeus statue came alive and his green eyes flashed; but most ASD kids would have major meltdown in this place.  There is a show every 30 minutes where Jekyll transforms into Mr. Hyde and threatens to slit everyone’s throat in the restaurant, which was a nice touch.

More importantly, the food was BLAH and the place is SUPER expensive.  They squeeze every dollar they can get out of you from the first second you walk in the door.  We spent $90 on two meals that were worse than most fast food places.

On the other end of the spectrum, the Becco Itallian restaurant on West 46th Street was EXCELLENT and very accomodating with our special SCD diet.  They went out of their way to make the it an autism-friendly dining experience.

Related:

• The Jekyll and Hyde Club
• Becco Itallian Restaurant on West 46th St.

GAO report: Special-needs kids abused in schools

Investigators in Utah say a teacher left Garrett Peck in an isolation cubicle for at least two and a half hours.

(CNN) — Congressional auditors have uncovered widespread abuse of techniques use to restrain or discipline special-education students in U.S. schools, with some deaths linked to the practices, a top congressman says.

The findings are among those expected from a Government Accountability Office report scheduled to be released Tuesday. The report documented serious problems with the way children with disabilities are being treated in public schools, including cases of children being held face-down on the ground.

The GAO report was prepared for the House Education and Labor Committee, which is considering new laws governing what actions teachers can take to rein in disruptive special-needs students.

“I think what we’re going to hear from the GAO is that very often, special-need children are subjected to the policies of seclusion and policies of restraint that have turned out to be lethal in a number of circumstances,” said Rep. George Miller, D-California, the committee’s chairman.

In other cases, children as young as 6 have been locked away “for hours at a time,” Miller said.

“What the GAO is telling us is that that policy is fairly widespread,” he said. “The state regulations about how to handle these incidents don’t exist in about half the states, and in other states you have kind of a patchwork of regulations.”

The GAO, the investigative arm of Congress, found that state laws governing the treatment of the more than 6 million children classified as having “special needs” — conditions including autism and Down syndrome — are patchy at best. Teachers and school staff frequently lack training in correct restraint methods, and in some cases, where improper restraints led to injuries, teachers often kept their jobs.

Only five states keep track of incidents where special-needs students are separated or restrained. Parents contacted by CNN commonly said they were not told their child was being disciplined until he or she began to behave badly at home — a sign of trouble at school.

[FULL STORY]

Related:

• The Coalition for Positive Behavioral Interventions and Supports … Abuse
• USA Today: Restraint can dispirit and hurt special-ed students

GAO in 2007 investigated similar allegations in residential treatment facilities.

Often in schools, investigators found, teachers aren’t fully trained in the techniques. Only seven states even require training, and 19 have no laws or regulations on restraint or seclusion in school.

• USA Today: GAO: Schools restrain, confine disabled children

A new report from the Government Accountability Office, Congress’ investigative arm, also out today, finds “widespread” allegations of abuse involving the practices in schools — even when students aren’t physically aggressive or dangerous to themselves or others.

• Hearing About Restraints and Seclusion Today

Today at 10am (EDT) is a live webcast of hearings on the “abusive and deadly use of seclusion and restraint …

• Disability News | PatriciaEBauer.com

Records reveal more abuse at Texas institution - ‘Fight club’ abuse apparently was not an isolated case From the Dallas Morning News: State records say dozens of employees at Texas institutions were fired…

• Mother Records Autistic Child’s Alleged Abuse - 11Alive.com | WXIA
• GAO Report Says Children with Disabilities Abused | Autism Disorder
• GAO Report Says Children with Disabilities Abused « A Time for Change

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

My parents sent me to this nice autism school and all I got was the lousy swine flu!

Autism Parents in NYC get a taste of the Swine Flu to go with that Autism …

The new virus also showed up today in Brooklyn and the Bronx, and may have also infected a Manhattan Catholic school, Mayor Bloomberg said.

“So far, the swine flu here looks like the garden variety flu we see every year,” the mayor said. “All patients we know of are recovering, with the overwhelming majority having had only mild illness.”

A team from the City Health Department is at PS 177, a school of about 400 autistic kids in Fresh Meadows, to determine if it is swine flu that sickened 82 students there.

[FULL STORY]

Top 20 - Fun Sites for Kids with Autism!

Below is my revised list of some of the best games/fun sites for kids with autism. My daughter loves these sites. Poisson Rouge has bumped Starfall from the #1 spot around here, but the two are neck and neck for the all around funnest site.

1. Poisson Rouge
2. Starfall
3. Fun with Facial Expressions
4. PBS Kids
5. Literacy Center
6. Aven’s Corner
7. The Wiggles Playground
8. ZAC Browser is the first web browser developed specifically for children with autism!
9. Kinderweb Educational Children Games
10. Playhouse Disney
11. Fun Brain
12. Sensory World
13. Game Goo
14. School Time Games
15. Mouse Trail
16. ABC Learning Games
17. My Little Pony
18. Caillou
19. Gamequarium
20. Tree House TV and Games

I sometimes wonder if those who feel that autism is related to vaccines created their own red herring with mercury.  If it’s not mercury, does that mean vaccines are automatically off the hook?  I have no clue and don’t claim to know, but it does seem like there is a lot of misinformation on all sides by people who are more concerned with being right than investigating the issue.

All I do know is that our lives changed on September 27, 2001 when our daughter had her 4 month vaccines.   That’s when we had the first seizure of what is as of yesterday 312 seizures (8 this year).  This was promptly written off as “just febrile, 1 in a million that she’ll have another.”  The doctors were all of the “no big deal” opinion.  When we requested our medical records a few months ago, we saw that they actually wrote “febrile seizure,  if it was even a seizure.”

No more seizures until the next day we received vaccines at 8 months. That’s when all hell broke loose in the seizure department.

I don’t see that any vaccine adverse event report was ever submitted on us at 4 months or 8 months, even though we spent a week in the hospital after the second round of vaccines.

On that 4 month day, 9/27/2001, she received the following:

• DTaP (SmithKline, Lot # 998A2)
• Comvax (Merck, Lot # 1827K)
• IPV (Pasteur, Lot # 81556)
• Prevnar (Lederle, Lot # 481556)

I have no frickin’ clue what all was in these, but not knowing what you are putting in your child and relying on some government agency to recommend it, doesn’t seem very smart in retrospect.  I think we got the following (below) injected into our baby that day, but finding out exactly what was in X vaccine on Y date is fairly confusing.  If thimerosal isn’t the culprit, does that automatically mean vaccines are 100% unrelated, case closed?

It appears that on that day, we injected our baby with the following cocktail.  I don’t know exact amounts and finding out seems nearly impossible.  I have no clue what most of these are, if they were actually in the vaccines, if some of them are not just scary hype, but it does seem in the realm of possibility at the very least that some combination of these + some genetic predisposition + the status of my daughter’s immune system; could be related.  Am I saying it is?  No, just that I am tired of the”this case is closed”, “nothing to see here, people, move on”, “mercury is not the problem” attitude.

Injected into my 4 month old on the same day?

• 3 types of polio viruses
• acellular pertussis adsorbed
• aluminum hydroxide
• aluminum phosphate
• ammonium sulfate
• yeast-based medium
• continuous line of monkey kidney cells
• diphtheria and tetanus toxoids
• formaldehyde
• Haemophilus influenza Type B
• neomycin
• phenoxyethenol
• Polymyxin B
• polyribosylribitol phosphate
• polysorbate 80 (Tween-80)
• RBCs
• streptomycin
• thimerosal
• washed sheep red blood cells

If you want to educate me on any of the above or what exactly was in those specific batches, drop me an email at autism.parent@gmail.com

Related:

• Gala goal: Help ‘break the silence’ of autism
• Yates Foundation Fund Donates to the Star Center

150 strollers show odds of whose kid gets devastating brain disorder

Countess/Getty

150 baby strollers are displayed in Central Park to draw draw awareness on World Autism Awareness Day.

It looked like a gigantic play date, but the 150 baby strollers lined up in Central Park Thursday were there for a far more serious reason.

Advocates from Autism Speaks had gathered the strollers together for World Autism Awareness Day to illustrate that one in 150 children - mostly boys - is diagnosed with the complex brain disorder.

“It’s been a constant challenge,” said Robert Howley, 53, of Maplewood, N.J., whose 18-year-old daughter, Kathy, is autistic. “You have to face it every day. It’s something that never goes away.”

Autism Speaks co-founder Bob Wright said parents with autistic children need emotional support - and financial support because most insurance plans don’t cover treatment.

“These parents are broke and exhausted,” he said.

Sen. Richard Durbin (D-Ill.) and Sen. Bob Casey (D-Pa.) introduced the Autism Treatment Acceleration Act yesterday to require insurance companies to cover treatment for the disorder. The bill was originally drafted by then-Sen. Barack Obama.

Actress Holly Robinson Peete, whose 11-year-old son, Rodney, is autistic, said the disorder puts a strain on families.

“My husband and I - with an 80% divorce rate [for couples with autistic children] - had to do a lot to keep our family intact,” Peete said.

[FULL ARTICLE AT NY DAILY NEWS]

Related:

• World Autism Awareness Day Website
  
• Autism Treatment Acceleration Act
• Autism and Divorce - Where does the 80% number come from?
• Prresident Obama’s World Autism Awareness Day Speech 2008 - “As President, I will appoint a Federal ASD Coordinator, an “Autism Czar”
• 150 strollers
• The Autism Experience: The True Meaning of World Autism Awareness Day

World Autism Awareness Day would have been a great time to name the new “autism czar” considering it was 1 year ago that then candidate Obama said the following on autism.

Obama on Autism …

“Many insurance companies have failed to assume their responsibilities. Individuals with autism are routinely denied insurance benefits for their treatments. As President, I will appoint a Federal ASD Coordinator, an “Autism Czar” to oversee and coordinate a nationwide effort to deal proactively with ASD. This effort will include diverse but credible research, treatment, personal care/assistance and family support and will work with existing national and state organizations and taskforces. We need to ensure that combating autism, once and for all, receives the recognition and priority it deserves at the highest level of government. This appointee will also have a mandate to eliminate bureaucratic obstacles that may be delaying implementation of important measures and will ensure that all federal funds are being spent in a manner that prioritizes results. We need to build effective communication and collaboration among federal, state and local agencies. Right now, our government is just trying to keep up and, as any family who faces autism will tell you, we are not even doing that. What we know and what we have seen is that America can and must do more.”

[Excerpts from Senator Obama's World Autism Awareness Day Speech]

Related:

• Obama/Biden on Autism (.pdf)
• G20/World Autism Awareness Day - Brown Obama Must Help
• Progress is slow in the war against autism
• Prime Minister Gordon Brown Responds To Autism Campaigner On World Autism Day