Thursday, May 31, 2007

Jacob's First Playdate

We haven't had many proper playdates for Jacob. Sort of a result of the whole all consuming nature of Jimmy's care. But Jacob has a friend at daycare who attends Jimmy's school as a kindergartener. I am taking the two of them to see Shrek 3 on Saturday. I called his mom to set it up. I knew this boy knew Jimmy from school and had made some effort to play with him, enough that he asked me why Jimmy "talked weird." The boy wasn't being mean, he just didn't know how to express what he was thinking. Turns out that he sees Jimmy everyday for "specials" - things like art, music, PE, and the library - as he is part of the class that Jimmy is mainstreamed into for these activities.

Jimmy apparently has a friend too, someone named Dalton. Apparently, Dalton has told Jimmy's therapist that he is Jimmy's best friend. Jimmy yammers on about him too, repeatedly saying his name. Guess I am going to have to try to set them up too. Hopefully, the parents will be game. I always worry about that.

Sunday Sessions

We have been getting a lot of weekend therapy for Jimmy lately. You are easily unaware of how much is getting done and how much time is being spent your kid when services are being delivered at school and daycare. It becomes sort of intrusive when you have people in your own home constantly. I am very comfortable with our long term therapist - she appreciates what we go through. Lately, however, there have been new therapists training with her. It is so unnerving to me to have strangers in my home.

Monday, May 28, 2007

A Brilliant 80's Song...

Rick Astley "Never Going to Give You Up" from late last year in Britian. I think he sounds better than he did 20 years ago. And I don't think he has aged a day.

Sunday, May 27, 2007

Digging out...

I have neglected my bedroom, especially my closet for a very long time. I am taking a little break from cleaning it up.

Not much to say about today. My husband thinks that Jimmy has made a great deal of progress in May. I think he is right. Jimmy is more verbal, more responsive, and playing slightly less in his poop. He scored at or above grade level on his PALS test (it's basic phonics and literacy skills) in every area. I am was thrilled about that - since I do PALS at my job, it was something quantifiable that I understand. He sings in the kindergarten concert on June 13th. I am really dying to see it. His therapist Rachel will be there as well. I told her to bring enough kleenex for us both.

Happy Memorial Day.

Saturday, May 26, 2007

Both kids are asleep...

And we can't the UFC pay-per-view. Something is seriously messed up at Comcast. You can't even get through. Blah...

I really hate Comcast.

How I wound up a soccer coach...

Oh yeah, another reason why I have been too busy to post...

MASA got Jimmy's soccer team coach, but the coach (who is also the commissioner of the program) quit before it even got started and soliticed a parent volunteer. I was the only one to step, so I am soccer coach this year. I should scan the team photo. It's pretty cute.

I'm kind of miffed at MASA though. Previous seasons, we have been provided a coach and TOPSBuddies, kids earning volunteer credit by providing one on one assistance to the kids. Nothing this year. And it is impossible for me to do anything truly organized like drills when I am responsible for my own kid not running off. I am very frustrated and hope it doesn't happen again.

Friday, May 25, 2007

Memorial Day weekend...

Another posting lapse, but things have been a little crazy. We are considering putting our house on the market and buying one on the other side of town. I am not completely sold on the idea, as there is much to do to the place first. I am also not crazy about increasing our mortgage, but he insists that we won't be house poor. I am a little less convinces, but trying to not sweat it. We actually have to sell the place first.

Jacob had a stomach bug this week - I had to leave work early on Wednesday. I am supposed to move my collection into the new library soon. Jimmy graduates kindergarten in a few weeks. We are juggling therapy all summer. I am hoping for a summer school contract for some extra cash. There is a lot going on. I am frazzled.

It's got to get better.

Sunday, May 13, 2007

Microsoft and Home Depot cover ABA!!!!

In related news, I will never shop Lowe's again!

Families Changed Microsoft's View of Autism

By Amanda Spake
May 8, 2007

BRIAN ROSENBERG SUFFERS from autism. And while that term can describe a wide range of developmental problems, says Jon Rosenberg, Brian's father, "My son is at the severe end of the spectrum." At that level of severity, he explains, "Kids don't know how to imitate, and that's how most kids learn. It took weeks to teach my son to get himself a glass of water, months to teach him how to use a fork and spoon."

Brian has learned these skills by working one on one with a behavioral therapist, day in and day out, since his diagnosis. Behavioral therapy for autism can cost as much as $60,000 per year, a serious financial challenge for a family whose insurance won't cover it. Indeed, many families have no coverage for the services that autistic children need most. The Rosenbergs are lucky: Jon's employer, the software giant Microsoft (MSFT1), covers behavioral therapy as part of its health-benefits package. But that wasn't always the case — and the story of how the policies changed at the Redmond Empire is instructive for any family facing a costly medical problem.

Statistics collected yearly by the Department of Education show that the number of children between ages 6 and 21 with autism or autism-like developmental disabilities has increased by 500% in the last decade. A recent report by the federal Centers for Disease Control and Prevention shows that as many as one child in 150 is now diagnosed with an autism-type disorder. While doctors have been unable to explain the reasons behind this startling increase, research on how best to treat and teach autistic children has confirmed the value of an early intervention program that relies on intensive behavioral therapy. More than 500 medical studies published in the last two decades support the idea that behavioral techniques, focused on teaching everything from language and academics, to basic life skills, can help substantial numbers of preschool-age children with autism achieve intellectual, academic, communication, and social skills that approach normal range.

Yet, too often health insurers do not cover such treatment, and few corporate benefit managers are aware of the significant problems this gap in coverage creates for their employees who struggle to pay for their autistic children's therapy.

Jon Rosenberg was determined to change all that, if not in the world as a whole, at least in the world of Microsoft. "About eight of us parents got together in 1999 and were comparing notes on how behavioral therapy was effective for our autistic children," he recalls. They decided that each would send an email to the president of human resources at Microsoft. "Each of us told him about autism, how it affected our children, about behavioral therapy and what a great, positive impact it was having on our children and our families."

The company immediately promised to look into the issue — but it probably wouldn't have done so without prompting. "That started the dialogue," recalls Mark Stoppler, program manager for U.S. benefits at Microsoft. At the time, Stoppler says, very little was understood in the insurance and benefits world about autism or autism treatment. Coverage of speech therapy, physical, and occupational therapy was typically denied because insurers assumed that speech would eventually come to all children, and that occupational and physical therapy were appropriate treatments only for adults.

To its credit, Microsoft did not take those assumptions for granted. "We worked extensively with the University of Washington's autism center to get an understanding of the condition, the types of treatment available, which showed the most promise," explains Stoppler. The university provided background on Applied Behavioral Analysis, a type of behavior therapy for autism that has proven successful in many clinical studies. Once Microsoft decided ABA would be worth covering, the school helped the company design a benefit plan around the treatment.

Microsoft, a self-insured health-care provider, pays 80% of the cost of ABA. Because research suggests that the type of early intervention needed by most autistic kids required three years of intensive behavioral therapy, Microsoft imposes yearly and lifetime limits based on those assumptions. Microsoft recognizes and compensates for two levels of care: The benefit provides for a program manager who oversees each child's entire treatment program, as well as for the therapy assistants, who are the day-to-day providers of the therapy. Speech, occupational, and physical therapy recommended by the program manager are also covered at 80%.

To employees of Microsoft who have autistic children, the value of these benefits is almost incalculable. "This therapy is literally Brian's lifeline to the world the rest of us live in," says Jon Rosenberg. "It gives him a sense of control in his life. Brian is 14 now, and I can see by 20 or 25 he will have learned enough to have independence in his life." Better still, "Now, the world is not just a place making all of these demands on him that he doesn't understand, it's a place he can have fun, too."

Microsoft's approach to autism benefits remains more the exception than the rule. But a few other corporations have taken similar steps. Home Depot (HD2), for example, began covering the full range of treatment for childhood autism as part of its health insurance benefits for the company's 365,000 employees about eight years ago. Roughly a year and a half before autism coverage was added, employees who had been denied behavioral, speech, physical and occupational therapies for their autistic children had to appeal the denials, first to the company's insurance carriers, then to the company's benefits managers. And often, even the appeals were denied.

According to Illeana Connally, the company's vice-president for benefits, Home Depot eventually was persuaded by unhappy employees to look more deeply into the issue of autism. Connally and her staff consulted various research centers that specialize in the treatment of children and adolescents with developmental disabilities, including one that was particularly close to home: the Marcus Institute in Atlanta, which was originally founded through a gift from Bernard Marcus, the founder of Home Depot, and his wife. Home Depot eventually fashioned a package of autism benefits that was essentially written by medical experts from the Marcus Institute and the Kennedy Krieger Institute, a treatment and research center in Baltimore. The policy covers cognitive behavioral therapy, occupational therapy, speech therapy and physical therapy for children with autism, as well as for kids with Down Syndrome, cerebral palsy or a severe neurological or genetic disability.

Connally is hopeful that a wider array of companies will institute autism coverage in the future. Indeed, advocates of such care may have numbers on their side: The one major cost-benefit analysis of behavioral therapy for autism, a study published in 1998 in the journal Behavioral Interventions, suggested that the savings in unneeded social services could be substantial if every autistic child was offered these services. Using a model that assumed preschool children with autism would receive three years of early intensive behavioral intervention from age 2 until they entered school at age 5, the study concluded that by investing about $50,000 per child yearly for three years, more than $1 million per person would be saved by the time these children became 55-year-old adults. Since as many as 500,000 kids may be diagnosed with autism by 2010, early behavioral therapy looks like it could be a good investment.


We had our second "game." He is doing better than he used too - he is more interested in kicking the ball, but it is still a solitary activity and one of a relatively short duration. His soccer pictures were very cute... Only if I had a working scanner!

For Mother's Day, I met my mom at the mall with the boys. We had lunch and shopped for a couple of hours. My mom commented on how Jimmy was doing better in walking with her. And we got haircuts - by we, I mean the boys. Jimmy's is extremely short. Jacob rebelled, not going as short as I wished. Jacob also twisted his ankle by jumping off the train on the indoor playground while my mom was alone with them and I was in the bathroom. Mother of the year - I felt pretty awful.

Only five weeks left of school. Six weeks on my contract. But really - who's counting!

Saturday, May 05, 2007

Autistic Kids Have Difficulties Learning Words

Autistic Kids Have Difficulties Learning Words
Fri May 4, 7:02 PM ET

FRIDAY, May 4 (HealthDay News) -- Young autistic children have difficulty recognizing ordinary words, and their brains become overtaxed as a result, according to a University of Washington study.

"Rather than becoming an expert in recognizing words, their brains slow down. Because these children can't distinguish what should be a familiar word, their brains work too hard, and they are unable to focus on new words. When they can't understand a word, they miss everything else that follows in a sentence," Patricia Kuhl, co-director of the university's Institute for Learning and Brain Sciences and an expert in how infants acquire language, explained in a prepared statement.

Her team was scheduled to present the findings Friday at the International Meeting for Autism Research in Seattle.

The researchers used sensors to record the brain waves of children between 19 and 30 months of age as they listened to familiar words (dog, cat, ball, book) and unfamiliar words (bide, pint, rate, verb).

The pattern of brain activation in typically developing children showed markedly different responses to familiar and unfamiliar words. Their brain activity when hearing both types of words was centered in the temporal lobes of both hemispheres of the brain.

Autistic children showed no difference in brain response when hearing familiar and unfamiliar words, which means they were unable to differentiate between the words, the researchers said. Brain activity when hearing the words was more diffuse and not centered in the temporal lobes. This indicates that they were using more of the brain in an effort to understand the words, the team said.

The two groups of children also listened to recorded words that were played backwards. The brains of the typically developing children responded as if they were hearing something entirely different from other types of words. The autistic children's brains showed a similar pattern.

"One of the puzzles of autism is the variability of children with it," said Kuhl, a professor of speech and hearing sciences. "We believe the highest functioning autistic children have some recognition of phonemes (the basic sounds of language). And this new study shows autistic toddlers can differentiate between backward words, which are not characteristic of a language, and real words. So, some learning has gone on."

This study is part of research to understand why language disorders are a characteristic of autism.

Thursday, May 03, 2007

Previous post about Applebee's

Why did this letter have resonance with me? Recently, I was at Ihop, when Jimmy started to flip out about the bustling crowd. I left my mom and Jacob to settle the bill. The manager followed me out and accused me of ditching out of my bill. He didn't initially accept my explanation about my son and the bill being settled by my mom. The parking lot was full, there were people watching, and I felt like I was treated like a criminal. It was (and still is) humilating.

A letter making the rounds...

From a list serve that I am on...

Dear Applebee's,

I write you as a faithful patron of your chain who left the
restaurant feeling discriminated and disgraced as single mother
tonight. I look for Apple bees because the food is reasonable and
it's nice atmosphere. I am single parent and I have a child with
autism. He is four years old and limited verbal his name is Andy.
Time to time I take him to your restaurant in Fountain Valley,
California and we have had a wonderful time.

Tonight I got him out of the car to choose where to eat he ran to
Apple Bees with a smile on his face. This is his favorite place. He
does not understand when food was passing right by him and he had
nothing. When we first sat down I asked the waitress to give us
something as soon as possible. 10 minutes later we got our drinks
and crackers. . . .I was singing to Andy doing everything I could
every time food went by he let out a short yelp. I was pulling out
everything in my bag of tricks I could. Then he calm down.

The manager came to me and told me because of my child he lost
business (boy I felt guilty). I felt as though my heart was being
ripped into two. I try so hard with my son. I told him my son was
waiting for food --chips anything. I apologized and told him my son
does not speak much and has autism and I'm sorry. He came back a
second time and told he was losing more business because of my son.
I had to do something. All my son wanted was drinks something. He
came back told me we had to leave. I'm sorry I told him. This time
every one was looking at us because of the manager kept making a
huge deal and coming to our table. We were yet to get our food. My
heart was sinking and all my son wanted was food! I felt stepped
upon like yesterday's trash.

I had to pull my fifty pound four year old out of his favorite place
in tears. This posed a tremendous safety hazard and was totally
unnecessary. I feel like my heart was smashed in a million pieces.
When we were out the door the manager said "I had to do I have to do
and that I should not take my son out if he is not fit (How is he
qualified to make this comment)." As he plopped a bag of food to go
in my hand.

I take my son out to eat a lot and we have never been kicked out and
disgraced like this. We ate at this restaurant a lot. . . . .He just
a little kid---and if they would brought him food---or drinks---I
could not get him out the door after he ran in because he was at his
favorite place---
I understand why he did what he did but he did not have to be cruel
he could have done it differently ---instead me having to pull him
out in tears. I do not have much money and I try to get my son
positive experiences and take him to places he enjoys I earned a
gift certificate from my work and I took him there for a good time.
I usually can not afford Apple Bees and I take him there as a reward
he lights up so much in the restaurant.

I feel belittled and disgraced and this hurts this truly hurts. I
feel like I have been ran over by a Mac truck. How can I ever take
my sweet my little boy to his favorite place again let alone out to
eat in public again?

A former AppleBees patron