Saturday, June 30, 2007

Senate Fully Funds the Combating Autism Act

From the ASA e-newsletter... I apologize for the lack of link.

Senate Fully Funds the Combating Autism Act

The Senate Labor, Health and Human Services and Education Appropriations Committee approved its version of the FY 2008 spending bill, including a 52 percent increase for autism-related activities at the CDC and Health and Resources Services Administration. This is the full amount authorized for these programs under the Combating Autism Act.

Specifically, the bill provides $37 million for the Neurodevelopmental Disabilities Residency Program and the Developmental-Behavioral Pediatrics Training Program, which both provide long-term, graduate-level interdisciplinary training, as well as services and care for infants, children and adolescents with disabilities. The Committee also provided $16.5 million for CDC’s autism programs, which include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. The House also provided $16.5 million for these programs.

Because funding levels for autism are different in the House and Senate bills, they will need to be worked out in a conference committee. ASA will be working diligently to ensure that autism activities receive the resources they need.
Other Critical Programs Funded

The Senate Labor, Health and Human Services and Education Appropriations bill also included increases for other programs of interest to the autism community. The legislation provided $11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007, and $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.

Programs under the Developmental Disabilities Act also saw a significant increase of 11 percent in the FY 2008 bill. The legislation included $2 million in new funding to support a National Clearinghouse and Technical Assistance Center to promote leadership by families of children with disabilities in the design and improvement of family support services.

Unfortunately, neither the House nor the Senate included funding for the newly authorized Lifespan Respite Care Act. This is a great disappointment for the disability community, as the legislation has broad bipartisan support. While funding for this year is now unlikely, ASA will continue to work with its allies in the disability community to see that this important program receives the funding it needs.

Friday, June 29, 2007

Changing the World...

One bathroom at a time...

This is a funny story. A few weeks ago, the first week Signal Hill's pool was open, my mom and I took the boys there and then over to Walmart for McDonalds and to shop. Jimmy had an accident in the aisle. This was actually the second time it happened. He was terrified of the bathroom - it had one of those sensor devices that flushes a very powerful and loud rush of water when triggered. Like I said, it wasn't the first time it happened, but I was so frustrated, I actually said something to the manager on duty, a guy named Roy. I asked him if they would consider installing a more traditional, less noisy flushing toilet in the family bathroom for Jimmy. He isn't the first autistic child to be scared of a public toilet. Heck, "normal" kids are scared of these things. It's not an uncommon complaint. He said he would talk to the people from corporate. I followed up with him a few days later and he said it was a nonstarter for sanitary reasons. Not like it is sanitary to have my kid peeing in the middle of the store. I decided to press on, figuring it was an ADA issue, at least in my mind, for my child. I didn't know where to begin, but I intended to follow on with it over the summer.

I was in the store again yesterday and approached someone working on the renovation. This woman happened to be from the corporate office. I explained my concerns to her and she gave me the number of the construction manager overseeing the renovation in Arkansas. His name was Cliff. I was surprised that he was very interested and sympathetic to what I had to say. He said he would look into it and probably get back to me after the Fourth of July. Instead, he called today. He tossed it around corporate and basically said that I needed to go back to the store and talk to Tye, the store manager, because he had to be initiated at that level. I cruised back into Walmart during the lunch hour today. I met Tye, who had not only spoken to Cliff but the woman I had spoken to the day before... he had already ordered the toilet. It should arrive in about two weeks and will replace the DeathFlush. I was stunned. I figured it would be this big battle, but they embraced my concerns immediately. I am completely blown away.

If every battle was so easy. Thank you Walmart, especially Cliff and Tye. I am just amazed.

Jimmy and Paris

Not Hilton. I cat sat for a friend last weekend and took Jimmy along. He made a friend.

Wednesday, June 27, 2007

Scientists eye an enzyme as target in fighting autism

Scientists eye an enzyme as target in fighting autism
Wed Jun 27, 9:11 AM ET
Associated Press

US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.

In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.

In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.

The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.

"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.

MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.

These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.

The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.

The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.

In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.

The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.

The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.

Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.

"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.

The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.

Sunday, June 24, 2007

A little No Doubt to kick off the week

I have decided to let Gwen help relieve my stress. The band joined her on the last night of her solo tour for the encore. I love them!!!

The End...

Of a very long weekend. Hopefully this week will be a little less stressful. Then again, summer school starts... Who am I kidding?

Saturday, June 23, 2007

Enjoy the silence...

Before I found out about my summer school contract, I was afraid I would wind up with nothing, so I picked up a few shifts at the reference desk of my old employer. I am sitting here, working on lesson plans, enjoying the peace. It is really quiet. I forgot what quiet is like. Over the last year, I worked in a completely open library space in the middle of an elementary school. No quiet there. Certainly none at home. I almost expect someone to come through screaming, because that's what I am used to.

Christine has departed and I am left again with my kids. It's been a great week, but I can't wait to have Jacob back in daycare. Jimmy has another week in before summer school, so he is going to Parks and Rec for the mornings this week. Rosa will be around for him, so I have no worries about transition. Therapy kicks in earnest next week, so I will be home in the afternoon, doing lesson planning, packing, and painting. At least I hope too.

Thursday, June 21, 2007

The Thing Arrives

Hey, it goes with his Spiderman and Captain America costumes.

Wednesday, June 20, 2007

First week of summer...

I have had both boys home with me. Christine, my niece, has been around to cover for me when I have meetings and stuff - she is doing a great job! We have taken them to the pool - Jimmy still won't slide, but he really likes the lazy river. His therapist came with us (session at the pool and McDonalds) and he started a quasi conversation with her about the three of us in the lazy river swimming and his recent trip to the bowling alley before school let out. It was "Mrs. Grizzard, Mr. Booty, Sonia, bowl, ball" - words strung together, not formally structured. What it represents is huge, though. We have started plotting a bedtime routine and the food plan will begin soon as well.

Jacob will start his new school on Monday. Childtime reduced the fee after my complaint, but Jacob now has his heart set on going to Cradle to Crayons. I have to let him try. Jimmy starts summer school the following week, so he will be at Parks and Rec with Rosa for next week. I enjoy the extra time with them, but it reminds me how much they are to handle. Hopefully it's better when they are older.

More later.

Friday, June 15, 2007

A long week

Where to begin... it was the last week of school this week, for both Jimmy and myself. We had FAPT on Monday. Services will continue through September 17th. We get 12 hours a week of in-home therapy, 2 hours a month of parent training and five hours of consult in summer school. It's great. Maybe the only thing I would ask for is a little more parent training. They will work on bedtime routine and the whole food selectivity thing over the summer. I will be around for most of the sessions, so I will have the opportunity to learn. I am really excited about that.

Jimmy had his school concert - Kindergarten's "Songs of Friendship." He sang a little, but mostly I was pleased he stood on the riser for the whole time. I know they were slipping him fruit snacks to reinforce for appropriate behavior. Whatever works. At the end of show, he actually winked at me. Or maybe it was a visual stim. I don't know, but it was very funny and cute! I am very proud of the progress he has made. Last year, he wouldn't have stood there at all. He would have been running around, stripping naked!

Of course, today was the last day of school. Jimmy has finished kindergarten. It scarely seems that it has been long enough to have a rising first grader. Actually, if he wasn't autistic, I wouldn't - I would never have sent him to school at five, as I think having a boy at the young end of the school cut off is detrimental for them socially and academically. But Jimmy is there, he is who he is, and he has done well. I love him (and Jacob too, of course) with more love than I could have possibly imagined for another living being. That's saying a lot - anyone who knows me knows that I love probably too deeply, too much in general. I can't love these boys enough.

Incidentially, it was also Jacob's last day of school as well. I made the difficult decision to pull him from Childtime. They have had many management changes over the past year. I have taken it in stride, even when mistake were made in the care of my own child. Things have improved of late - they have two new wonderful managers, along with some great new teachers. Jacob's teacher recently returned from disabilities from injuries sustained in a serious car accident. They were doing more with curriculum and really making progress in the center.

Ultimately, the corporate and regional managers made the unfortunate decision to add a summer surcharge of $25 a week for "curriculum enrichments." In my opinion, curriculum needs to be effectively offered, explained, and assessed before you can enrich it. Kindercare charged a flat $50 to cover their special summer programs for preschoolers. This would have totalled $250. In light of everything that has happened since August, I felt that it was poor form to nickel and dime us, so I pulled him. I took him back to Kindercare and a place called Cradle 2 Crayons. He said he wanted to go to the latter, so he starts the 25th. I don't feel great about yanking him, but I felt that I had no choice, that to stay was just allow myself as a parent to be exploited financially for no sensible reason.

My niece is coming to help me with them next week - I don't work a full schedule, so she will cover for my summer school meetings and trainings and such. When I am not busy, we will hang out. I am looking forward to it. I also have a shift at Mercer's reference desk next Saturday and ALA next Sunday. A busy but enjoyable week...

As for my last day of school... I generally don't post about my job. I would like to say that I have never been more challenged, more stressed, or worked harder at any job than I have at being an elementary librarian. I also have never found anything to be more professionally and personally rewarding. I love my job, I love my colleagues, and I love my students. As I said before, i generally love too deeply and too much. With kids, you just can't. I would also say that I have never felt more loved than I have in my school with the adults and children that I am blessed to work with everyday. I know understand what joy truly is - it's been their gift to me.

Monday, June 11, 2007

Children with autism get day in court

"Children with autism get day in court
By ANDREW BRIDGES, Associated Press Writer
Mon Jun 11, 12:46 PM ET

The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.

Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.

Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.

Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.

"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.

Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.

"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.

The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.

Large scientific studies have found no association between autism and vaccines containing thimerosal.

But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.

"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.

Powers said that the science regarding a possible vaccine-autism link is in dispute.

Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.

"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.

Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.

The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.

Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.

Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.

In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines."

I have never been a big believer in the vaccine theory - I am all for pursuing answers, but I have never thought that the onset on Jimmy's autism was related to his immunizations. Now ear infections - don't get me started on those. There are questions to be answered, but I don't think it is all in one place.

Saturday, June 09, 2007

A Big Saturday

My school carnival, a trip to a pool. I started the morning feeling lousy, but I am glad I got my second wind. Jimmy floated in a tube, by himself, on the lazy river. I was never far away, but it was still liberating. I can take him in the lazy river and it's all okay. He's not scared, he enjoys it, I enjoy walking in the current. His progress often equates freedom for me. We are both happy.

Friday, June 08, 2007

Jimmy's Latest Brillance

Jimmy told both my mom and my sister that he loved them for the first time on the phone this week. I neglected to mention it in favor of the bowling post. No, it isn't a reflection of priorities. Bowling came with pictures.

Thursday, June 07, 2007

Jimmy Bowls a 69

Jimmy and his class went bowling. I was able to break free to chaperone. I was surprised - he really seems to enjoy it. Unfortunately, 69 was the worst score. The other two kids scored in the 80s. Maybe his mom "helped" too much!

Tuesday, June 05, 2007

Jimmy's PALS Scores

PALS stands for Phonological Awareness Literacy Screening. It is a very basic reading test, assessing phonomenic awareness, phonics, fluency, and core reading vocabulary. For Kindergarten, the fall benchmark score is 28 and the spring is 81. Jimmy's fall test was a 7. His spring test was a 94. I think is testimony to both the instruction and the consult services brought in for his attention and behavior issues. I am just astounded at the progress this reflects in him. I am stunned. He just amazes me all the time. Of course, as I am typing this, he is playing in the toilet.

Sunday, June 03, 2007

South Carolina Health Plans to Cover Autism

S.C. health plans to cover autism
By Savannah Morning News
Created 2007-06-01 23:30
Kirsten Singleton | Saturday, June 2, 2007 at 12:30 am

COLUMBIA, S.C. [1] - For families of autistic children, the financial options are few and often unattractive. Ask grandparents for help. Take out a second or third mortgage. Limit their children's treatment or pay for it themselves, sometimes at an annual cost of $50,000 to $60,000.

"A lot of families, in most cases, Mom stays home and tries to learn the best she can to try and do it (the treatment) on her own," said Craig Stoxen, president of the South Carolina Autism Society.

Now, though, the state is stepping in to offer help.

Among the 47 S.C. bills that became state law this week is a provision that requires health insurers to cover disorders such as autism and Asperger's syndrome.

There are exceptions and exemptions, such as for small businesses, but the state health plan is included.

"All I know is, being stuck in the middle with two autistic children, it's as necessary for insurers to cover (autistic children) as it is if they had diabetes or muscular dystrophy or cancer," said Aiken resident Amy Weeks, who has two autistic teenagers.

The requirement is projected to cost employers about $10.6 million annually, including $6.57 million to the state's general fund.

Sen. Dick Elliott, D-North Myrtle Beach, hopes state agencies can use discretionary funds to cover the cost this year so the state doesn't have to wait for next year's budgeting process to start funding the plan.

Elliott said it'll be cheaper for the state to pay to treat autistic children than to pay for their institutionalization if treatment was unavailable.

"It's comparing nickels and dimes to hundred-dollar bills as far as the cost to taxpayers and cost to the state," he said.

No Group Discount for Autism Care

An article in today's Post about a family with autistic triplets. I guess that's how my situation could be worse.

Saturday, June 02, 2007

I'm going to ALA

One more thing... I am going to ALA on Sunday, June 24th. It's here in DC. I have an events pass, but might register for the programming if time and money allow. There is a reception for UT from about 7 - 9, so it will be a full day. I have friends from grad school, namely my partner in crime Susan J (we presented together at a couple of conferences) will be here. I am looking forward to seeing her.

Should be fun. Can't remember the last time I took Metro anywhere!

Jimmy's First Movie... sort of

Well, I wound up taking both boys to Shrek 3, along Diana, Gage, and his mom. Jimmy sat through the trailers with complete attention. He was in my lap and not moving, but it was okay. About 30 minutes into the movie, he was done. He wasn't horrible, but I didn't want to push it, so we left. Regal Cinema very nicely gave me my money back when I explained the situation. The two us went shopping at Kohl's and Old Navy while we were waiting. I was sad we didn't see the movie, but all things consider... well, 40 minutes for him of sitting still and attention in a loud theater, which is a completely new setting to him, was amazing!

A Reprieve

Next weekend is the last weekend of soccer. I just got the e-mail. Not that our season was particular long or anything, but I should never have taken it on as a committment - and by committment, I mean the coaching part. Just adds another level of stress. I am extremely happy. Now I can find a swim class for Jimmy. I won't be in charge of that!

Friday, June 01, 2007

Happy Friday!

A weekend full of activities. Soccer on Saturday. Taking Jacob and his friend to Shrek 3. Jimmy has therapy on Sunday and I might try to take him to the pool at Signal Hill, which should be open. Weekends don't feel like days off. Then again, vacations don't feel like vacations either - just changes of venue with less resources. The joy of having kids.