An Actual Comment I Got About Autistic Kids

I have had too much time on my hands with the snow days so I commented on an article in a newspaper. I didn't realize there was a direct message function, so this was forwarded to my e-mail. The comment that he made in his post suggested giving autistic kids guns and ammo if they couldn't be institutionalized. The editor has since removed the comment.

"I just want to say I don't mean to hurt anyone's feelings over this issue. I just say what is on my mind and sometimes the truth is hurtful to some. I applaud the devotion and dedication it must take to raise an autistic child, but it's just my opinion that they should be institutionalized and the school tax burden that they cause to skyrocket would deminish. It is no doubt the most difficult thing to ever do, to part with such a child. Tell me why people take them to restaurants to disturb somebody elses peaceful meal?"

I need to get back to work. No more holidays, no more snow days. I have too much time on the Internet with too many people who have entirely too many people who have too much time and opinions. Starting now... going to clean the guest room.

What Happens When Autistic Children Become Adults

From the Autism Learning Felt blog. What is most stunning in this entry, in one Florida survey, 74% of autistic adults want to work, but only 19% have the opportunity. The government and communities aren't looking ahead to the future for these kids. Parents... we are just trying to manage the day to day. It also mentioned that ugly institutionalization word again. No job, no group home apparently. I don't want an institutionalized life for my son. He deserves more. I want more. I didn't bring him into to the world for this.

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Does "essential benefits packages" mean nationally mandated? Does this mean we can stop fighting state by state? Does this mean Jimmy will get a chance at the care he deserves even though he lives in Virginia?

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Washington, DC (December 25, 2009) – Autism Speaks, the nation’s largest autism science and advocacy organization, applauds the members of the U.S. Senate for yesterday passing an overall health care reform bill that contains provisions for autism insurance reform, as well as the funding to accelerate the scientific discovery of autism treatments and cures.

The provision for autism insurance reform was introduced in September by Senator Robert Menendez and passed by the Senate Finance Committee with the support of Committee Chairman Max Baucus. The provision will prohibit discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package.

The bill also included elements of the Cures Acceleration Network (CAN) Act, introduced in April by Senator Arlen Specter . Like the CAN Act, this provision of the health care reform bill would create a large new fund for, and focus on, "bench to bedside" research, creating an emphasis on more quickly translating research discoveries into practical medical applications. Autism Speaks was the first disease advocacy group to support the CAN Act.

“We are grateful to Senators Menendez, Baucus, Specter, and their Senate colleagues for passing this health care reform bill, ensuring that families dealing with autism are a part of larger health care reform,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now that the Centers for Disease Control and Prevention has confirmed that autism affects one percent of American children, the need for our legislators to ensure that families can afford the treatments their children need, as well as a redoubling of our federal government’s commitment to science and innovation in the search for a cure, has never been more important.”

“The addition of the Cures Acceleration Network to the health care reform legislation will create the urgency we desperately need at the federal level to push science toward real impact on people’s lives,” said Geraldine Dawson, PhD, Autism Speaks Chief Science Officer. “In the area of autism research, in particular, much needs to be done to translate important discoveries into treatments and therapies that can help individuals living with autism today.”

The Senate and House versions of the health care reform bills must now be reconciled and approved by both bodies before presented to President Obama for his signature.

Have Yourself a Little Taps Christmas

Santa hit it out of the park this year. Meet Disney's Little Taps. Sadly available only in Asia, we had to buy ours on Ebay from a seller in Hong Kong. Grandma got the fifth from someone in Oregon, but it was Asian in origin too. It's sort of the perfect autistic toy - ordered, repetitive, soothing. Jimmy's been watching these Little Taps videos on You Tube since the end of the summer and he loves them. He didn't put these things down for nine hours today. He's just delighted.

I am putting together an e-mail to the powers that be at Disney to see if there is any chance these things will be released here in the States. The mark up in the secondary market might kill me long term. But seeing Jimmy so happy, so engaged with Christmas... it was so worth it.

An e-mail I received regarding concert tickets... Concert Fans Beware!!!!

Concert Fans Beware!

There’s a train wreck about to happen and consumer groups say YOU will be the victim if the two most powerful corporate interests in the live concert business get their way. But you can help stop the merger of Ticketmaster and Live Nation. The government needs to hear from music fans now. Tell the Department of Justice that you’re against these monopolies amassing illegal power over consumers, before it’s too late. antitrust.complaints@usdoj.gov

As a concertgoer you have already felt the pain, and if Ticketmaster and Live Nation get their way, it’ll get worse. In the last 12 years, since Live Nation and its predecessor started its widespread takeover of the concert industry, concert ticket prices have shot up 82% while the consumer price index has gone up just 17%*. We are concerned that if the two concert industry behemoths, Live Nation and Ticketmaster, are permitted to merge, the variety and quality of artists coming to local venues will be affected, and your costs could rise further and faster.

Five of the nation’s most prominent public interest groups called on the Department of Justice to block the proposed merger of Ticketmaster and Live Nation:

“Consumers deserve a fair deal in the entertainment marketplace, not the fewer choices and higher prices that would result from this merger,” said Susan Grant, Director of Consumer Protection at Consumer Federation of America

“This merger is an insult to both musicians and consumers,” said James Love, Director of Knowledge Ecology International

“We cannot envision a remedy that would ease this chilling impediment to competition… In the absence of other effective, expeditious remedies, the proposed transaction should be prohibited.” American Antitrust Institute White Paper

As described by Senator Herb Kohl (WI) in the House Antitrust hearing, “This merger will not only expand Ticketmaster’s control of the ticketing market by eliminating a competitor, but it is also creating an entity that will control the entire chain of the concert business – from artist management to concert promotion and production to ticketing and ticket resale.”

“This merger would be a disaster for consumers. Nothing short of blocking this takeover of the ticket market by two industry behemoths will be acceptable,” said National Consumers League Executive Director Sally Greenberg

“As president, I will direct my administration to reinvigorate antitrust enforcement. I will step up review of merger activity and take effective action to stop or restructure those mergers that are likely to harm consumer welfare…,” said Senator Barack Obama when he was campaigning for the presidency.

If you agree with the consumer groups and lawmakers, make a difference and LET YOUR VOICE BE HEARD NOW.

Send a message to the Antitrust Division of the Department of Justice telling them you support President Obama’s campaign promise to protect the American public from abusive monopolies.

antitrust.complaints@usdoj.gov

To learn more, check out:

ticketdisaster.org

Two Feet of Snow...

I guess timing is everything. I had surgery on Friday afternoon that ran long and was discharged from the hospital very late in the evening... into a snowstorm. I thought they said it wouldn't begin until after midnight. They have already called school for Monday morning, at least for me. Jimmy is completely screwed up sleepwise - just a bundle of energy from being inside all day with no running around. Jacob is crashed out after having "helped" his dad shovel snow. It was a fruitless task as it came down so quickly. I have been up and down between getting sedatives out of my systems while putting painkillers into my systems. Odd timing for a blizzard, but for me some good enforced down time to recover and to hang out with my kids.

1 in 110...

A slight improvement from the initial 1 in 100 that I heard a few months ago, but the CDC is officially reporting 1 in 110 as the autism rate in children, with the rate in boys at 1 in 70. It is still stunning to me that we are arguing about insurance coverage and educational services in light of these statistics. Look around at the kids you know. Name one thing that is more prevalent these days than autism. I think the only the thing you can look and see is asthma and ADHD. As quoted in the linked article, ""Autism spectrum disorder" is an umbrella term for three types of neurological disorders that can lead to significant social, communication and behavioral challenges." Neurological. Yet parents are fighting state by state to get autism covered under health insurance policies and we are completely unclear what is going on nationally within health care reform regarding autism. (Just when I think I have a handle on that, it seems like something has changed yet again...) We fear coming educational budget cuts. I worry what tone outgoing governor Tim Kaine has set in slashing mental health funding on his way out of office. (And he is running the DNC for the next few years? I really hope they don't call here looking for money.)

1 in 110. When does it become a crisis? When each and every child is severely autistic? Or when that severely autistic child is yours?

I will admit, it wasn't on my radar until it happened to me. But autism changed the world view of our extended family as they have seen us struggle. With these number, if you don't know someone who is struggling with raising a child autism, with having the therapy they need uninsured, and their schooling inadequate for their disability, it will not be long before you do. And you won't have to look any further than family photos.

An older article, but the quote is why I love Bob Marshall, for all his quirks....

LEESBURG, Va., June 21, 2009

Insurance Companies Refuse Autism Coverage

Total Cost For A Child Can Reach $5 Million, But Few States Mandate Coverage; Is Change On The Horizon?

By Thalia Assuras

(CBS) An estimated one in every 150 children in America has autism and the number of reported cases is growing.

The total cost of caring for an autistic child can reach a staggering $5 million.

Parents are increasingly demanding that insurance companies cover the newest treatment.

CBS News correspondent Thalia Assuras visited one such family in Virginia.

At 7 years old, Tristan Oldham is the big brother in this rambunctious trio. A couple of years younger is Gareth - bubbly and playful until he was two.

That's when "he slowly stopped playing. He would sit in a corner and chew on his shirt and play with the shadows," said mother Cassandra Oldham.

Gareth was diagnosed with autism. Nine months later, as Cassandra and Bill Oldham struggled to cope with Gareth's condition, they suffered another blow. Their third child, Korlan, is also autistic.

"I can't even describe it in words really. Just pain. Pain. Gut-wrenching more pain," Cassandra Oldham said.

The emotional anguish was multiplied by financial stress.

Intensive, one-on-one behavioral and speech therapy called "applied behavior analysis therapy" or ABA helps the boys. But it costs up to $7,000 a month per child for the recommended 40 hours per week. The Oldhams struggled to pay even half the amount.

"Which child do you choose? We don't have enough money to pay for therapy for both of them," Cassandra Oldham said.

The Oldhams have insurance, but not for autism therapy because Virginia isn't one of the seven states that mandate coverage. Businesses say adding autism to the list is too expensive.

"Prosthetics, mental health, stress, hypertension: all of these things lead to a cumulative effect that runs the risk of putting the insurance out of reach for the average business person and the average employee working for that person," said Hugh Keogh of the Virginia Chamber of Commerce.

Cassandra Oldham and state Delegate Bob Marshall don't buy it. They are pushing legislation that would force insurers to cover ABA, and say the costs of a policy would be minimal - somewhere between $2 and $4 a month.

"There are real children whose lives are going to be destroyed because we are acting indifferent to them. That's not a moral response," Marshall said.

But in tough economic times, states like Virginia are trying to figure out how to do the most good with fewer resources.

"I have a lot of fear when I think about the future and where my kids will be at," Cassandra Oldham said.

They've thought about moving to a state where their boys can get all the help they need.

The Dolphin Feeding

So, one of the first things we did was the dolphin feeding at Sea World. We got in the line, bought the fish, and briefly waited. We came in, DH took the video camera to try to get footage of us feeding the dolphins and we set to it. Jacob is doing okay, but I have one hand on Jimmy. With his free hand, he is taking off his socks and shoes, wanting to go for a swim. I am thinking this isn't going well. Jacob is pushing up on the edge to get closer to the dolphins, so I can see him going in too. One of the trainers sees me struggling and asks if she can help, looking specifically at Jimmy, who wants to swim with the fishes. I introduce Jimmy. The next thing I know, she blows her whistles and calls over our own personal dolphin to feed, pet, and commune with. It was truly amazing. We were over the moon and I was moved by her generosity. It was the greatest gift to both my boys, but most especially Jimmy.

Sea World

Sea World was just huge for Jimmy. It wasn't just that we went through every exhibit. Jimmy would drag us through multiple times. He was so excited to feed the dolphins, he tried to take off his shoes to go in for a swim with them. He would wake up every morning and look out the window, across the parking lot, towards Sea World, begging to go. He loved every bit of it. So did Jacob.


The holiday photo with Shamu...

Jacob in conversation with Zap and his elf friend. This was hysterical. They were street performing elves in the waterfront area and I think Jacob spent 20 minutes with Zap, just talking to him. It was just kind of amazing. Jacob still talks about him, asking if he's coming for Christmas. Forget Santa, it's all Zap now. Whoever this guy was, he is amazing. If you stumble across this blog, thank you for making my kid feel so special!


Jacob in the tank in the new Manta exhibit, under the coaster. Kind of cool.

More Universal Island of Adventure Photos

The Fantastic Car...


Jimmy wanting no part of the Spiderman picture.

After much delay, the Thanksgiving photos...

Okay, I know they are considerably overdue, but here is the beginning of the Thanksgiving vacation photos. We sort of didn't do much of anything this summer in anticipation of this trip and it certainly was worth it. We went to Disney World in 2006 and realized how we really missed the boat with Jimmy when we wound up spending hours at Epcot's aquarium. So, this was the Sea World trip with a day at Universal's Island of Adventure for Jacob.
Meeting Spiderman...

Jimmy running around If I Ran the Zoo in the Dr. Seuss area in IOA... Couldn't get him on many of the rides like we did at Disney, but he loved the play areas at Universal.

Jacob with Betty Boop...

Jacob as a Jurassic snack...

Every parent, as sad and frightening as this is, should read this article...

This is the future that I fear and the one that I work so hard to give Jimmy the tools to prevent.

"To whom it may concern:

"If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky's. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible.

"Trudy Steuernagel."

Yes, we are back... and alive...

We took our vacation to Florida for Thanksgiving... and I brought back a cold. So I have again neglected my blog. I will try to compose a post about my trip tomorrow. I did want to post our best photo of our dolphin feeding experience. Actually, there is a better one with all four of us, but it is upstairs.

More tomorrow on the trip...