Tuesday, February 12, 2008
For those who were wondering about Tuesday
Better Living Through Chemistry
Monday, February 11, 2008
So we didn't go...
Saturday, February 09, 2008
Still on for tomorrow...
Friday, February 08, 2008
Reality Blah covers the campaign...
My sister hates me right now...
Thursday, February 07, 2008
Your weekly update...
Monday, February 04, 2008
Mac Mini Disaster
Second Part of the Auditory Therapy article...
Sunday, February 03, 2008
Our local paper does another story on autism
Thursday, January 31, 2008
Late Nights
Tomorrow I met with Jimmy's teacher to check his progress. He had a string of potty accidents last week, so I want to make sure that has been addressed.
Wednesday, January 30, 2008
We're #3
A letter to the editor that explains a little more about what happened to HB83
"Unfortunately, the House Labor and Commerce Committee has decided more study is needed and has forwarded HB 83 to a commission to study the bill and provide recommendations for next year's session. I hope they will realize the error in the current insurance company interpretation of federal education law and recommend passage of the bill. I urge all of our delegates and senators to join Marshall in his efforts to level the playing field for children with disabilities."
So it isn't dead forever, just for this year. It could easily be studied to death, though. If you feel passionately, you should call your elected officials and urge them to help out kids like Jimmy.
Tuesday, January 29, 2008
Monday, January 28, 2008
Sad News from Richmond
From the Potomac News
"HB 83 Mandated insurance coverage for children.
Del. Jackson H. Miller, R-Manassas is a cosponsor of this bill.
It was killed by the House Commerce and Labor Committee and would have required insurance companies to provide coverage for habilitative services for children."
First, I can't believe the reporter left out that whole "autism" thing. Habilitative services for children with autism.
This proves yet again that most legislators in Richmond don't give a crap about kids with autism. If my past experience hold true, the business lobbyists went in there to speak on the bill, saying it would cost companies too much in premiums. Poof. Dead.
Sunday, January 27, 2008
More Presidential Stuff
Thursday, January 24, 2008
Job Search Update
Wednesday, January 23, 2008
'Underdiagnosed' Girls With Autism Struggle to Fit In
"It is exactly this desire to please that Myles believes may explain how a girl with autism could fool the experts, so to speak.
"We overtly teach social skills to girls," Myles said. "They are told not to get angry, they are told to be nice, they are told to share -- all of those behaviors."
Myles believes these social skills are not as ingrained in boys as they are in girls. "It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl," Myles said. "
This article is very interesting... I never thought of autism this way for girls, that we are socialized to overcompensate. The last paragraph goes to the stigma that still exists for all parents of children with autism, especially those who are among the highest functioning.
""Nightline" recently followed Kaeda around school and met a faculty member who was skeptical, suggesting that the children's challenges had to do with the way they were parented. Myles said that kind of reaction is "heartbreaking, and indicates a gross misunderstanding of autism spectrum disorders. And I'm not blaming that indiviudual staff member, but he or she doesn't understand.""
Brenda Myles is much more understanding than I am. Jimmy seems to be much lower functioning than these children, but for years autism has been equated to and dismissed as bad parenting. If anyone suggested that to me about my child or any other child with autism, like my son's classmates, they would catch hell from me. I am stunned that an educator working in this day and age would say that.
Sunday, January 20, 2008
My birthday weekend...
Saturday, January 19, 2008
Happy Birthday to Me
Thursday, January 17, 2008
My Continuing Quest
An e-mail from the Edwards campaign...
Thank you for writing John Edwards about autism. He appreciates that
you took the time to share your thoughts and concerns. Hearing from
people all over the country about the issues important to them
strengthens our campaign.
Autism is a quiet crisis, affecting an astonishing 1 in 150 children and
four times as many boys as girls. Nobody knows why diagnoses have risen
tenfold just over the past decade.
We need to find the causes so we can help protect our children. The
National Institutes of Health have concluded that childhood vaccines are
not the cause, but many families are not convinced. As president, John
Edwards will double funding for autism research, issue an all-hands-on
deck challenge and follow the results wherever the science takes us.
We also need to take better care of children affected today. Our plan
for universal health care, guaranteed coverage of autism care in
Medicaid and private insurance, and better investments in special
education and home health workers will assist families to support and
treat children with autism and help children, and adults, reach their
full potential.
We should also invest more in recruiting, training and paying
sufficiently teachers, therapists, psychologists and others working in
the special education field. It's time to finally get on a path to
fully funding special education.
This is an area John Edwards has been involved with for a long time. He
started fighting to help families with autism when he first arrived in
the Senate. One of the very first bills he introduced and help make law
was the Fragile X Breakthrough Research Act, which provided new
resources for a genetic condition that results in autism for thousands
of children. The Senate passed the bill into law, providing new
resources for research devoted to Fragile X.
Again, thank you for sharing your ideas with the campaign.
Sincerely,
The Edwards Team
Wednesday, January 16, 2008
The Countdown
Tuesday, January 15, 2008
Great news on HB 83!
committee and voting for it on the House floor."
Monday, January 14, 2008
I didn't rig this outcome...
| You Are Cookie Monster |
Sunday, January 13, 2008
Is Cookie Monster Silly?
House Bill 83
Saturday, January 12, 2008
Meet my oldest nephew...
Why did they put this on YouTube? Hawaiians love their karaoke a little too much.
I did do one more thing today...
Combating Autism Act has been funded...
Wednesday, January 09, 2008
Genetic glitch raises autism risk
Tuesday, January 08, 2008
The Indignities of Therapy
Monday, January 07, 2008
It bears repeating...
- 1 in 150 births
- 1 to 1.5 million Americans
- Fastest-growing developmental disability
- 10 - 17 % annual growth
- Growth comparison during the 1990s:
- U.S. population increase: 13%
- Disabilities increase: 16%
- Autism increase: 172%
- $90 billion annual cost
- 90% of costs are in adult services
- Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
- In 10 years, the annual cost will be $200-400 billion
Hillary Clinton has an autism plan as well...
I know it is politics and what not, but I thank Senators Clinton, Edwards, and Obama for taking a stand (at least on paper) to help kids like my son. It means everything to me.
Maybe I am a little too political, but I love Jimmy. If you were in my shoes, you would be screaming too.
We had his evaluation today. I will post at more length when we get the full results. Suffices to say that he is not MR.
Sunday, January 06, 2008
This is why we should be afraid...
son's generation (9 years old) and the rest of his peers with autism
(10% of male population that age, according to CDC) mature and need
services. My son also does not have mental retardation by the "book"
and so does not qualify for group living by current standards. This
is going to be a huge social problem for our country, and for us, as
aging parents and caregivers."
Melting Down
Friday, January 04, 2008
It's Friday
Two Dems that didn't mention autism on their campaign website...
Bill Richardson's on board...
Autism
First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.
Who doesn't talk about autism? Part 2
"Cute little guy," Romney responded before launching into a monologue on topics including stem cell research and cloning — but not autism.
"I felt avoidance of the issue," Wessels said."
John Edwards' autism position
"Autism affects families from every walk of life. Sometimes I talk about the Two Americas – but when it comes to fighting for families affected by autism and autism spectrum disorders, we must come together as One America to deliver on our national promise – helping every child realize their full potential." -- John Edwards
Autism and autism spectrum disorders affect an astonishing 1 in 150 children. More children than ever before – a 700 percent increase over the last decade – are being classified as having an autism spectrum disorder. We need to learn more about why the number of children diagnosed with autism and autism spectrum disorders has been growing. We know that early intervention is often crucial to helping children with these diagnoses reach their full potential, but the education and health care resources needed to help them and their families are strained to capacity. For families, caring for a child with autism can be expensive and emotionally draining. While Congress took an important step last year by dedicating more than $900 million to address autism over the next five years, more can and must be done. [IDEAData, 2005; CDC, 2007]
John Edwards believes every child deserves the opportunity to reach his or her potential. Helping everyone reach personal independence and assume social responsibilities is a responsibility we all share. His Promise and Potential plan will:
- Guarantee quality affordable health care for families living with autism – ending insurance discrimination.
- Help unravel of mysteries of autism by issuing an all-hands-on-deck research challenge.
- Fund schools so they can provide essential services.
- Strengthen supports for families dealing with the diagnosis.
- Ensure a continuum of care with lifelong supportive services.
Hillary Clinton and John McCain both speak out on autism...
Who hasn't talked about autism?
Thursday, January 03, 2008
Obama's Campaign actually says something about autism...
More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families."
This was the first search I have done on a candidate on this issue. I am pleased to see that he is addressing it as part of his healthcare policy. I am going to Google each candidate and see what they all have to say. Especially to a family living with autism, how a candidate sees addressing this issue is as important as any other policy issue.
Could someone explain...
Mommy, is your butt going to get smaller?
Tuesday, January 01, 2008
Happy New Year
Sunday, December 30, 2007
New Year, New You
W is for Worksheet
Christmas Break Winding Down
Friday, December 28, 2007
A nice day
My husband has left the building...

Welcome to the ride...
Thursday, December 27, 2007
Autistic Kids - The Sibling Problem
A positive sign
I feel like poo...
Tuesday, December 25, 2007
Merry Christmas!!!!
Monday, December 24, 2007
Pantless at McDonalds
Autism is priceless...
An Interview with Jamie Lynn
Sunday, December 23, 2007
Good Morning...
Saturday, December 22, 2007
On the first day of Christmas...
Shortly after we arrived home, Uncle Mark arrived. It had been awhile since he had been for a visit, which went fairly well. Except for Jimmy peeing in his cup... he was shifting around as I went to try to get him to the bathroom. Just leaked right there, as he was drinking his medicine (I have never seen anyone move as fast as Mark did to get out of the way.) So Jimmy used his cup... I can feel you cringe, but this is my life. It's why my house doesn't really get clean or neat - I can barely stay ahead of putting out the fires. It's an effort just to get him to keep his pants on at home. Unless you are living it, it is so hard to understand what we go through.
Yeah, I wish that it had been the perfect visit, but I can't knock it - the husband made prime rib for dinner. The food was great. The boys each got a present early as Mark opened his, so Jimmy got his little Padme and Anakin action figures for his Galactic Heroes set. Rosa, their old sitter, dropped by with gifts for them as well. They both were very happy to see her as well.
Tomorrow is another packed day. We have therapy for Jimmy in the morning, a visit with Auntie D in the afternoon, and I am planning to Jacob to a kids church service here in town tomorrow night. Hopefully I can fold some of the clean clothes in the basement and put a dent in the loads of work I have to do over the break. I get the feeling it will be over before I know it.
Friday, December 21, 2007
For those keeping track of the car saga...
A Needed Break...
Monday, December 17, 2007
Autism Study Lends Credence to 'Fever Effect'
Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.
"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."
Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement."
This is an interesting article. Thanks to Edwin for sending it to me. I am going to go to bed finally. Maybe I will dream about what he would say to me if he could. He has thoughts, ideas, even a sense of humor and its all locked up inside. I long for a day when it will all come out.
Autism, Welcome to My Inner Circle...
We got a Christmas card from a couple we have know for years - someone my husband worked with in the comics industry. Taking you back... he, an incredible creative individual in many ways, got engaged and married this wonderful woman. We hung out a bit, until we started having kids. Then it got a little harder. I think as Jimmy's problems became more obvious, we both started to shut people we had known in the past. I had my friends from Mason, women who having been walking this road with me since the day autism entered my vocabulary. The husband has been sort of walking alone. Both of us found our paths easier than constantly having to explain or apologize for what has happened with our son. I will freely admit that I have shut my own family out to some degree, just because it hurts too much to have explain or defend or justify.
At any rate, eventually they moved away and we didn't stay in touch. In part for the reasons above, but also because regular old life has kept us extremely busy. Today, their family Christmas letter revealed that their son had recently gotten a spectrum diagnosis. The husband is crushed, but I am just shocked. I think maybe we collectively have 50 people that we consider friends between the two of us. Relationships are hard to maintain in adulthood in the best of circumstances. These are the people who we manage and even work at staying in touch with, even if we don't get to see them the way we would like or should. People he knew from his store, people I knew from grad school or my job, people we know now. Of those 50 people, not one had a child with autism or anywhere on the spectrum, save us. Until now.
By my estimation, that isn't 1 in 150. That's 1 in 100. The activist in me would really like to know how many kids it takes to make autism a national emergency, so people are motivated to find a cause, a treatment, and a cure. So kids like mine can speak and interact and live a more normal life. So families don't feel like they have to hide or apologize because their child doesn't act like his or her peers. How many kids and how many families have to suffer before the rest of the world cares or acts? Or does it have to strike everyone's inner circle first?
Friday, December 14, 2007
One more week...
Wednesday, December 12, 2007
A follow up e-mail...

The left side seemed to have worked with last round, so this focused on the right.
Tuesday, December 11, 2007
Date Night
Monday, December 10, 2007
Freaking hysterical...
A sick kid...
Sunday, December 09, 2007
Saturday, December 08, 2007
Buying stock in Jif
Thursday, December 06, 2007
Meeting with Jimmy's Teacher
Allison is amazing. It is her first year teaching, yet that doesn't scare me. I think initially she was overwhelmed, but this is now her life and passion. I honestly think she wouldn't have it any other way. It can be so hard to be Jimmy's mom sometimes - I carried that boy inside me for nine months. I have loved him more fiercely than I have loved anyone in my life. I need to know the people who I turn him over too for so much of the day love and believe in him.
I have always felt that Mr. Booty (the instructional assistant) believes him and now I know Allison does too. I am thrilled. She is anxious to continue consult and working with his therapists, which I think is great. I walked out of there for the first time this year really confident in his school situation. That helps me get through everything else I have to do with my day personally and professionally. It's huge.
Wednesday, December 05, 2007
Hey...T...
How to spend your snowy evening? Posting your husband's resume on hotjobs.com, careerbuilder.com, and monster.com. Am I good or what?
Please let there be a two hour delay tomorrow morning!




