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.

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?

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.

The Thing Arrives

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

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.

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.

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.

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.

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.

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!

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

Soccer...

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!

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.

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

Soccer practice...

Begins tomorrow. At long last. It took forever to get enough of a team together and then the coach had to bail out. But it seems to have been resolved and we will be practicing here in Manassas Park, at Signal Hill, tomorrow night. We went for team photos and everything. Of course, to keep Jimmy in the photo, I had to be in it as well. The girls doing the photos were over the moon about our inidividual photo, but I didn't the the digital. Guess I have to wait for the hard copy.

He was right...

From Time magazine...

"According to Kim Hyang Sik, in one of these calls, just last New Year, her nice Kim Hyang Im — Seung-Hui's mother — confessed to her aunt and other relatives that her son had been diagnosed in the U.S. with autism."

I feel ill.

An interesting observation

My husband commented on the man who committed the horrible atrocity at Virginia Tech. He was chilled by the comments that the shooter was an individual who could not make eye contact with other, a person who wasn't capable of speaking in conversation. Asperberger's? It sounds familiar. Not that many spectrum people grow up to be mass murderers, but it does sound, according some press accounts, that he wasn't fully understood by his own family.

IEP Meeting

I am sure some of you were wondering if I survived it. The answer is yes. We got everything we wanted... consult and direct services are now written into the IEP as well as parent training. The speech language goals are much more appropriate to his disability. The occupational therapy stuff - well, the therapist is fantastic, so we are always well covered there. I finally got a chance to apologize to Jimmy's teacher about all of the drama. I didn't like the Rifton chair, but I hated the way the administration handled the situation after that initial conference. I think some good is coming of the situation, but someone got hurt in the process. I am never going to feel great about that. I think the thing that was most interesting about my IEP meeting is that the principal did not come. I did have the head of special programs, but he always attends.

I also have my pet SEAC cause for next year. I need to convince the city to hire a second speech therapist. The regulations state that they only have to employ one speech therapist for every 68 students served. We have one serving 70. Moreoever, no other district in the area is making the same demands of their therapists. The one I know outside of Manassas Park serves 50 and that keep too busy. When you have children with issues like severe articulation problems, being completely non-verbal, etc..., 20 minutes a week is ridiculous. And no one picks up the slack. Health insurers aren't required to do it (that whole habilitative versus rehabilitative thing again), they pawn it off on the schools which don't have the resources to do it correctly. It's insane. I had these great goals in Jimmy's IEP and I realized that the person who wrote them won't be there at the next meeting. As a matter of fact, I have not had the same speech therapist at Jimmy's annual meeting ever. From one year to the next, it changes.

We have parent training tomorrow night to work on the poop issues. He was playing in it again this evening. I also have to figure out what to do about getting my homework done for Wednesday. My timing is such that I can't take a personal day. Blah.

A big Jimmy week

A quick post... I have SEAC tonight, in preparation for next week's school board meeting. And Thursday is the IEP meeting, the first since the Rifton chair incident. I will give a lengthy post of the proceedings Thursday evening.

My family doesn't schedule visits...

They just show up. I pull into my parking spot just before Jim pulls in his, shortly after 6pm. Jim runs in the house to go to the bathroom before we split the kids to do errands. I had just gotten back from the doctor after being diagnosed with strep and needed to go to the pharmacy. As I am sitting in the car, a man walks up to my window. It's my brother-in-law Jamie. He is up from Texas for business in Richmond for the week. No one told me a thing. Not a word. Didn't think anything about my sister's multiple phone calls to work today. Nope. We went to dinner and he played with the boys for a while before heading back. He is returning tomorrow night too. He could be hitting the bars while he is away from my sister, but no, he wants to see his nephews. He is nothing if not family oriented. I think its sweet. Of course, the timing is horrible as I have a presentation for class Wednesday night, meetings tomorrow, and a raging case of strep. But I am happy. Jimmy and Jacob are both having the best time with him.

We're Back

And our washer is working. An Easter miracle?

Going Home

Hopefully today. I hate going away. With kids, its not really a vacation, more a change of venue. This venue doesn't have enough toys, doesn't have all the safety mechanisms that we have set up - the gates, the doorknob handles. I keep finding Jimmy out on the balcony, stacking chairs and getting on top of them. I am terrified he is going to go over the side. I don't sleep as well, because I am trying to listen for him. Oh, and we only have dial up - our wireless card is dead and we aren't investing anymore in this laptop. If I get a summer school contract, I am lobbying for a iBook.

I'll post pictures when I get home. Hope you all had a great week.

Greetings from Massanutten

We are currently on vacation. It's going okay. Getting out of the house was a joy - our washer died before we got the last of the laundry done. First order of business is to purchase a new one, as the laundromat isn't an option for even a week. The trip itself has been uneventful. Well, except for the urinal cake incident - I invited the husband to guest post, but he doesn't want to talk about it. He was fascinated and reached in while a guy was doing his business. There's a story he'll be telling for a while.

Massanutten actually has a Kids Rec program and they actually take autistic kids. We actually had a meal without them. It's pricey (more than $10 an hour each), but it was nice to have a break. My in-laws were up yesterday, so we also got out to see "Blades of Glory," which was dumb, but hysterical. There isn't a whole lot up here for small kids. The new indoor waterpark's small fry area is so small, it isn't even worth admission. They have a great playground, which we have hit everyday. I'd be more relaxed if I wasn't lamenting the washer. Oh well.

Hit you again when I get back.

Ten Toys That Speak to Autism

My mom, who has been waiting since Christmas, is coming to buy the 8X8 moon bounce today. I wonder if he is ready for Tinker Toys.

Opposite End of the Spectrum...

Not the autism spectrum, but the familial, for sure. I was concerned about Jacob's articulation, so I put him through Childfind. Turns out that was a huge waste of time. His articulation was great, as was everything else. I told the Childfind coordinator that I had never raised a "normal" kid before. She looked at me and said "You aren't." Jacob possesses scattered skills intellectually to the age of about eight. He is very intelligent and advanced, completely the other end of things. He has two more years until he can even enter school because of his birthday. Finding a preschool is now a holy mission for me - I fear what could happen if I don't keep him challenged.

My date with Jacob

Jacob and I had some quality one on one time this weekend. We went to have a funny face pancake at Ihop. Then it was off to check out a new preschool - Chesterbrook, on the far side of Manassas. A bit more than what we are paying now, but definitely a preschool and not a daycare. A more structured curriculum and a gorgeous facility, but it will be way out of my way in the morning. But I am thinking about it. After an hour checking that out, we went to see TMNT. He is a boy obsessed now. The movie was actually pretty good and he did a great job sitting through it. It was about 90 minutes long and I think that's all he can do right now.

I always feel pangs of guilt when Jake and I do things like this. They are things that I did not have the pleasure of doing with Jimmy first. I'll be enjoying the moment with him and then I will just feel this stab and my eyes will start to well. Why don't I get to share these things with him? I take Jimmy out to eat, but he bounces around. I usually have to get a box because I don't have the opportunity to finish my meal. I can't imagine trying to get him to sit through a movie. I hope we will someday have our dates, too. I want to share these things with him, have special time with him. You know, time that doesn't involve an ABA therapist.

Expanding the Promise for Individuals with Autism Act of 2007

Senators Clinton and Allard Introduce Historic Autism Services Bill
Tuesday, March 20, 2007

Autism Society of America Welcomes Senate Legislation to Support Autism Community

The Autism Society of America (ASA) hailed today’s introduction of the Expanding the Promise for Individuals with Autism Act of 2007 as landmark progress for Americans living with autism and their families. This legislation, if passed, would provide approximately $350 million to improve access to comprehensive treatments, interventions, and services for individuals with autism and their families.

ASA strongly supports the Expanding the Promise for Individuals with Autism Act of 2007 and urges all Senators to cosponsor this important legislation. “This bill specifically addresses the most critically important issue to the autism community today obtaining appropriate services across the lifespan,” said Lee Grossman, President and CEO of ASA. “Our families and individuals with autism are pleased that their voices have been heard by Senators Clinton and Allard, and encourage their Senate colleagues to support this legislation.”

The proposed legislation aims to:

* for the first time, convene a task force to evaluate and report on evidence-based biomedical and behavioral treatments and services
* establish State-based demonstration grant programs to provide evidence-based autism treatments, interventions, and services for children and adults
* support protection and advocacy systems to address the needs of individuals with autism and other emerging populations of individuals with disabilities.
* fund expanded access to coordinated multi-agency treatments, interventions, and services to children
* provide supplemental grants for training and technical assistance to service providers and educators and to establish a national center on autism information.

ASA, its national network of chapters and other autism organizations joined with Easter Seals, National Disability Rights Network, Association of University Centers on Disabilities and other organizations delivering needed services in calling on the Congressional leadership to support this welcome—and critical—federal legislation for families.

Manassas Boy Hit by Train

This story was in the news last week. A six year old got clipped by a train as he was walking along the tracks, leaving him critically hurt. My secretary heard more on the radio today - the boy was autistic and had escaped his house. His parents quickly noticed and called to report him missing to the police, but it was still five minutes after he had been hit by the train. That just chills me.

Autism t-shirts

Okay, so I have recognized the fact that sometimes it might be beneficial for Jimmy to be identified by his disability - is this t-shirt too much? Cafe Press has like 3,000, so I really need some input here.

Sweet Victory!

Jimmy's services have, at least for the next 90 days, been upped from 2 hours a week to 12 hours a week as a result of today's FAPT meeting. This has been a long time in coming, but I am elated!!! We still get parent training, 2 hours every other week. Having that much therapy is a huge burden on our schedules, so having it re-evaluated on a frequent basis isn't all bad. I am just happy that he will have the services.

Jimmy at the art show...

(For the sake of vanity, I must mention that I was sick with a kidney infection and later had an allergic reaction to the antibiotic they had me on. I was running a fever, which is why I look hot, sweaty, and absolutely hellish.)

Here is the story. Last Thursday, I show up to pick up Jimmy, only to run into the principal. (Yes, I was polite.) Turns out there is an art show that night. Jimmy obviously can't tell me, but it did make it in the last newsletter - I just don't get the usual reminders that parents get from their kids. Turns out Jimmy has a piece in it. I call Dad - Thursday is his late night at work, so he is completely deflated at missing it. My friend Diana, who was helping me with pick ups (okay, she helps me with EVERYTHING these days) had her camera in her purse. We race over to get Jacob and then turn around and head back to the school. There are a ton of people there, Jimmy is way overstimulated. He is alternately going limp and stimming up a storm. All we want to do is find this artwork, take a photo, and get going. We find it - it has his name on it, but no class.

Backtrack a few months to the fall. There is a big display of Cougar Elementary Pride, featuring the class of every single grade, except the two autism classes. I was crushed. It just felt like a huge slight, but when I asked the administration, they blamed the PTO. I let the resentment fester until the whole Rifton chair thing broke. Then I decided to address it. The only member of the PTO leadership who I could find a phone number for - that was the poor soul that got my call. He apologized for it, attributed it to the fact that Jimmy's class isn't considered a homeroom on the list they got from the school, and said he would address it with the group and get back to me. That was a month ago and I haven't heard anything. Last week, I e-mailed the president of the PTO. Not a word from her either. A few days later, I am at the school for this art show and there is no classroom name on my son's artwork. I have decided that the people over at Cougar are officially trying to will the autism classes out of existence and the kids in them are non-entities, not worthy of being proud of.

At least that's how I feel. I am waiting for someone at that school, anyone, to show me differently.

Oh, one more thing, the most important thing. He did really nice work on that. I am very proud of him.

Cliched Song Lyrics Post

Woot woot!!! I have been listening to this a bunch, though. I would love to meet the Dixie Chicks. I could see having a beer with them - they would get me.


Taking the Long Way Around by the Dixie Chicks

My friends from high school
Married their high school boyfriends
Moved into houses in the same ZIP codes
Where their parents live

But I, I could never follow
No I, I could never follow

I hit the highway in a pink RV with stars on the ceiling
Lived like a gypsy
Six strong hands on the steering wheel

I've been a long time gone now
Maybe someday, someday I'm gonna settle down
But I've always found my way somehow

By taking the long way
Taking the long way around
Taking the long way
Taking the long way around

I met the queen of whatever
Drank with the Irish and smoked with the hippies
Moved with the shakers
Wouldn't kiss all the asses that they told me to

No I, I could never follow
No I, I could never follow

It's been two long years now
Since the top of the world came crashing down
And I'm getting' it back on the road now

But I'm taking the long way
Taking the long way around
I'm taking the long way
Taking the long way around
The long
The long way around

Well, I fought with a stranger and I met myself
I opened my mouth and I heard myself
It can get pretty lonely when you show yourself
Guess I could have made it easier on myself

But I, I could never follow
No I, I could never follow

Well, I never seem to do it like anybody else
Maybe someday, someday I'm gonna settle down
If you ever want to find me I can still be found

Taking the long way
Taking the long way around
Taking the long way
Taking the long way around

A few photos for the FAPT team...

This is what happens when I give four minutes attention to my three year old. Jimmy uses the bathroom and does this. The sad thing is there was a poopy hand print on the toilet paper. The child really tried - he just can't call out for help.

I am so out of my league raising him. God, please help me.

Consult has begun...

Well, it's been a busy week. Consult has begun for Jimmy. We have parent training on Sunday, so I am sure that I will hear about how things are going then. I know the teacher is very upset at losing the chair. I feel badly for her, but her boss agreed to move away from it and bring in consult and failed to keep her word when she balked at the consult. I had no choice but to pull the plug then. Once I learned how illegal this was, they were lucky I didn't call a lawyer. That's probably a little dramatic because the truth is there are some excellent people in this district - ultimately, the School Board and the Head of Special Programs helped me as they were supposed to. I guess you can say that in this case, the system worked.

Admiration

"We have a few autistic children in my school and none of them have parents who advocate for them as much as you. I really admire how dedicated you are to doing what's best for Jimmy."

This was from an e-mail my 25 year old niece sent me. She admires me. That's sweet. What she doesn't know is that I admire her more - she had her kids at 17 and 19, by a boy who has never really paid the ordered child support (he was only ordered to pay $50 for both.) She works at an elementary school, she goes to college, and until recently was raising those kids on her own. My sister helped out a lot, by my niece has never let her situation get the best of her. When she finally got married this summer, it wasn't to the non-father of the children, but to a man she loves and who loves her and her children. She is 12 years younger, but has always had the courage to make the best of her difficult choices. I admire her for that.

I Love to Singa - Jimmy's Favorite Cartoon

Eight minutes of giggles to the child...

FAPT Team Meeting

We finally got one... the head of Special Programs told me a week or so ago that we were getting one, but we got the letter today. We go to FAPT on the 19th. The link above describes the purpose of FAPT. Consultative services begin next week - the lead regional therapist is finishing the proposal tonight. I also talked to someone from Our Lady of Grace, the Catholic ABA private school that is in their first year. They have a waitlist and it's $10K, so it seems like a longshot. Anything to get what Jimmy needs, right?

No More Rifton Chair

At least not without a Behavior Intervention Plan. God is great and the head of Special Programs is pretty good himself. The therapists get to put together a proposal for consultative services and I get to worry less about my son. I feel bad that I was heavy handed with Mr. Special Programs, but never send me that kind of news in an e-mail at 4:30 on a Friday afternoon. I did nothing but stew, send e-mails, and make phone calls all weekend.

Getting Hosed...

So, apparently after our meeting a week ago, our principal has had a change of heart over consultative services. I got an e-mail from the head of special programs implying she was pulling the plug on consultative services, before they even get started. So, I am guessing she thinks restraining him in a Rifton chair for his school is completely appropriate and legal. Even though my understanding is DOE law says no. Wow. Of course, he sends this e-mail late Friday afternoon, so I can't respond for a few days. Lovely...

My nightmare...

Apparently, Rifton chair abuse is fairly commonplace among schools serving autistic children. This is just one article I found.

Gifted? Autistic? Or Just Quirky?

The first of the articles the Post ran in the Health section today. The second is a little more interesting to me... It's called Rare No More. The author speaks of his daughter, who was diagnosed in the early 1990's, when it occurred in three of 10,000 children. Now it's 1 in 150.

More snow...

Although, this time I am hoping for a delay, so I can sleep a little longer after the Oscars! Boys are a little stir crazy today.

The update with the Jimmy meeting. They told me sometimes he snaps the belt on the Rifton chair, sometimes they do, just to get him to stay. I told them to move away from the chair and work with the Matthew's Center therapists to get him to do it. I probably should have done what was suggested and tell them no more chair, but I took the middle ground. I am still really mixed on the whole subject.

I met with the head of Special Programs the next day to talk about that meeting and getting Jimmy more services. He is putting him up for FAPT again, this time for VABA with a speech therapist. The public hearing on the school budget is in two weeks and I am getting ready for it now. I will definitely be there - they have to raise the level of services they are providing. Alex, the reporter who put all that hard work into Jimmy's story, found that Manassas Park only spends half what Manassas City spends on children with autism. I don't care how small we are, but if they can afford a new building, they can dig a little deeper and pay for the education Jimmy and his classmates need, with direct and consultative ABA services as well as parent training.

"In My Language" Video

I am going to processing what I saw in this video for a week.

Meet the Rifton Chair

This is the beasty... there is a belt in addition to the tray as well as a pad between the legs.

More on the meeting later.... Jacob is melting down.

Sulu takes on Tim Hardaway

George is the best!!!!

If you are interested in my George story, go here...

http://realityblah.blogspot.com/2005/10/george-comes-out.html

Rifton Chair

I get to meet with my son's school regarding the use of the Rifton chair - it's a mechanical restraint that is used to keep him sitting (think high chair) instead of having him learn to sit and attend. Apparently it's illegal. So I get to go talk to them about it. My son's therapists, who said they would go with me, have now backed out, citing conflict of interest. I am furious.

Yippee!!!!

I don't have to work tomorrow - my school will be closed. But, Jimmy's school is open. Jacob will go to daycare. What does that mean? I have the day off!!! Granted, some of that will be spent on housework (namely cleaning their room - impossible to do with them around), but I am going to read, do some collection development, and plan my garden. Oh, I am happy, happy, happy!!!!!!

Stimmy Jimmy

His stimming behaviors have increased lately. He was under the weather this week, so I am thinking it has something to do with it. But he is stimming with his toys more and talking less. Hopefully next week will be a better week....

Autism Rate in US Higher Than Thought

"The largest U.S. study of childhood autism to date has found that about 1 in 150 have the disorder — a higher prevalence than previous national estimates."

I knew it would go up sooner rather than later...

Another Snow Day...

Jimmy's second day off school in a row. He has a cold and is pretty miserable. I kept Jacob home out of convenience - I don't want to commit to having to go out to today. I don't like cold and snow. Fortunately, we don't get it all that often.

Jimmy is increasingly scripting his language, especially through song. I guess any language is good, but it is a little weird to hear him quote something that you have heard on TV in response to a question.

More later... Jacob is screaming at me. I swear that is the kid's only volume.

The Update

Things have gotten busy yet again. Jimmy's lead therapist met with the head of Special Programs and switched our services from 2 hours of direct service to 4 hours of consultative a week. She had some good points in her argument for doing it, but I am still uneasy. Consulting doesn't ensure that things actually get done. Additionally, what we are getting is still less than other jurisdictions - he needs direct and consultative services. No school system should be allowed to plead poverty when this is what constitutes "a free and appropriate education" for my child. Especially when they have so many capital expenditures...

Jimmy is doing well, though. He is still pooping in the toilet. He hasn't mastered wiping though - I'll spare you the details on that. Jacob is just Jacob. He and I battle every morning getting dressed and dropping him off at daycare. It is quite honestly the worst part of my day. His favorite teacher Shannon's last day was Friday, so I think it will be an even bigger battle of the wills now. Jimmy's signed up for spring soccer and, in the interest of equity, I am looking around for something for Jacob to do. I have to fit it in around my class though. I thought life would slow down post-graduation.

Great News!!!

Jimmy has used the toilet for number 2. The barrier has been broken. He has gone where he has never gone before. Woo hoo!

Yes

From Wednesday's post... Jimmy didn't draw the picture, but he wrote yes in the box!

The Brief Update

Jimmy is still sleeping well. Jacob is developing into a little monster. He fights me every morning, every step of the way. I am trying to figure out what to do about it. At least Jim is getting six or seven hours a night.

Back again... at GMU

Updating from George Mason. I have a class on Wednesday nights now. I am currently sitting in the old reserves room, waiting for Jim to pick up Jimmy (I brought him to campus with me while Jacob is with Diana.) Jimmy is writing on the white board. When I get home, I will add the photo. He just drew a picture of an elephant and wrote "elepant" next to it. One of the student assistants drew a character with a speaking balloon and he wrote in "yes!" I am just blown away.

Things are going better. Jimmy sleeps at night now. We are still trying to get it right, however, as Jimmy got up at 5 a.m. this morning, cutting into my primping and cleaning time. I have to send his doctor an e-mail updating him on the sleep so he can phone in a prescription for the attention issues. But he is doing pretty well. Jim is more rested. I am more rested. Unfortunately, we all have colds, but there isn't much you can do about that this time of year.

Got behind again...

This new job kicks my butt. It really does, but I love it. I just can't believe that I went eight days without posting.

Now, the Jimmy update. He hasn't been sleeping. He stays up until 2:30, regardless of what time we put him down. He just goes until there is nothing left. Yet, we still get him up to go the school at 7:30. He doesn't nap. It's crazy. So, after a week and a half of trying to get a referral out of Kaiser, we have an appointment at Children's tomorrow. I got a sub, since they only time I could get an appointment was 12:00. I am hoping they can give him something to sleep, so we can get him on a real schedule and the 10 - 12 hours a night a child his age needs. It would also enable us to get some sleep - although, in fairness, Jim shoulders most of the burden as I am useless after 10pm.

I guess the upside these days is Jimmy is doing well at the afterschool program. I sent him for a few hours on Monday, since they do holidays at a different facility. Two first graders came over when I picked him up and said they were Jimmy's friends. I went home and cried. I never thought Jimmy might someday have peer friends - he is such an introvert - but I guess it could happen. I thought it would always be just us. Maybe there is hope there too.

How am I doing? Mentally, it's taking a toll. I am exhausted, anxious, and stressed out. I think I am starting to realize, finally, that this might be forever. Not that I am giving up hope on how far he can go, but recognizing the possibility that his life might be limited in scope. It's painful, in a way that most people can't imagine. I have aniexty attacks over my mortality, over him, over what might or might happen. I know I am not in control of this situation and his progress and it has turned into a horrible feeling in the pit of my stomach that I can't let go of...

With that said, I assure you I am trying. I am getting some help. I am taking care of my own health, physically and emotionally. I rejoined Weight Watchers and have lost five pounds. Someone at the meeting said about worrying how long it is going to take: "The time is going to pass anyway." They are right. I finally acknowledge that I have a responsibility to take of my kids, probably for a longer period of time than most parents. I won't be able to do that if I am obese and unhealty. I figure to be healthy, I need to lose 70 more pounds. I guess now is as good a time as any - the time is going come and go regardless.

Oh, and I turn 37 tomorrow. Lovely.

I can't believe I just posted my age on the internet.

Should I be worried?

Jim is on the bed, listening to "Strange Brew" by Cream. These kids are wacky - is it nature or nuture?

Jimmy Recovers... sort of...

He got over the flu, but he isn't sleeping well. His doctor from Children's called and scheduled him for Friday for an appointment - if Kaiser can produce a referral. I can't believe this is even a question, but it is. So I have to wait to request a sub until I know if Kaiser will come through. This sucks. And all I want is for him to get more than six hours of sleep a night. Six or seven is all he gets... He basically goes until he crashes at like 1 or 2 am, then we drag him out to go to school. Even on the weekends, we drag him out just to try to get him on some sort of schedule - and we fail miserably. Jim bears the brunt of this and is just fried because of it.

In good news, he is doing okay in the afterschool program. Our therapist had her first session with him at the school and she was pretty positive. It's a huge learning curve for these people, taking him on like that, but I deeply appreciate it. They'll never know how much.

I am off to bed. I should clean. My house is obscenely trashed, but I have no energy. I do have a three day weekend, so there is hope I will get something done.

I'll keep you posted about Jimmy.

Jimmy's Down for the Count

Has a virus. Will likely be staying home tomorrow. I am going to cuddle on him now and try to get him to drink something.

An Interview with Jacob

Yes, I am still behind... It's been a whirlwind of a week. I sat for the VCLA exam this morning. It's a professional assessment. I hope I did well - it was definitely easier than the GRE. No math. A good thing since I haven't seen the inside of a math classroom since 1987.

Jacob said he wanted to talk in this post. So here goes...

So, it's January 6th and 70 degrees out. Enjoying the weather?

Yeah.

Can today be attributed to global warming?

Yeah.

I know the ladies like you, but you have a special girl these days?

Yeah.

Who is she?

Shannon.

Going for the married women these days, I see. Do you think her husband will be jealous?

He's John.

Will John be jealous?

Yeah.

Jacob, why did you just dump the Ritz Bits on the floor?

Because I was putting them out.

Do you think you can put them away?

Yeah.

More with Jacob later, after he picks up the Ritz Bits.

Okay, Okay...

I have been busy. Back to school, back to work, back to daycare...

Jimmy started the afterschool program at Cougar. It's an adjustment for everyone, but I think especially the staff. I don't think they have had anyone quite like Jimmy before. I have been picking him up early this week, which makes no sense from a weather standpoint - if I want to go for a walk, you couldn't have a better week... I am afraid if they have too much Jimmy at once, they would head for the hills.

I started the whole narrative of our trip, but never finished it. I promise I will. Likely sometime Saturday. Saturday morning I have to sit for an exam for my provisional teachers license. I am suppose to meet my Mason friends for dinner at Wegman's on Saturday night. I thought the holiday bustle was over...

More later. I will post later tonight or tomorrow.

Still Getting Around to Posting

My niece came back from Texas to help with the boys, so I have been too busy to finish the quasi-saga of Christmas. But I do have some photos... The best burger chain in Texas is Braums - they also have fantastic ice cream. These pictures prove my husband's slavish devotion to it.

Our trip

Well, this is your longer post. We left our house at about 9 am Sunday for the day long odyssey that was getting to Texas. We went up to BWI with my mom so she could shuttle our car, since we had no idea which airport to which we would return. We pulled into the airport drop off and Jimmy threw up. The trip nearly ended there (since we were flying standby on passes, we had no investment in tickets or anything), but we pressed on. We were listed for a 1:30 flight, but waiting through 3 more to finally get on a 7pm flight. Since Jimmy was sick, he slept all afternoon. Jacob was a bear to deal with - we took turns (with Jim taking more than I) running him up and down the concourse, looking at planes.

We got on the plane and the world ended. Jimmy had a panic attack. We spent the minutes on the ground trying to figure out who best could hold him in his seat and who would get Jacob, since we had two seats three rows apart. I had to inform the entire flight crew that he was autistic, as well as the surrounding passengers, so there would be some level of understanding or empathy. The kindness of the people on our plane was pretty amazing, especially the flight crew. Once we pushed back, however, Jimmy was fascinated. He was pretty good the first half of the flight. Then Jimmy learned how to take off his seatbelt. Jim, who sat next to him, basically had to sit on him for the rest of the trip. But we made it.

Since Jimmy had slept all afternoon, we enlisted our niece Christine to come back to my dad's house to stay up with Jimmy, so we could get some sleep. Jimmy and Jacob were out within the first hour.

That takes us to Christmas Day, which we will be the next post as Jacob demands my attention.

Merry-Go-Round

Jacob on the carousel. We went to Grapevine Mills. Jimmy desperately didn't want him to ride it. He grabbed him and the waist and wouldn't let go. A longer post tomorrow.

A Shout Out

What up, E? Hope you are having a wonderful holiday in Hawaii!

Greetings from Texas

Well, after 8 hours at BWI trying to get a flight out, we are in Texas. Jimmy had a huge meltdown on the plane - for 15 minutes, from the time we boarded until the time we pushed back. He didn't want to stay belted, he was inconsolable, and I was sitting three row ahead with Jacob. Jim had to deal with it on his own. The flight attendants were amazing - helpful and supportive, running stuff back and forth between us for him, and running interference with the other passengers. I love American!!!!

More later. I will try to get some photos up, even though we left the camera.

I hope you had a Merry Christmas and we will be back for New Year's.

Okay...

I have been sick. What do you want? Big news though...

Jimmy got into the afterschool program at his school. I am thrilled. It's nearly $100 less a week in childcare expenses and it is less of a transition from home to school to daycare. Just home and school. It makes life more simple. Thank God for potty training. And he told me he loved me again.

I go on Christmas Break tomorrow. I promise more regular blogging from Texas... and new photos!

Neglecting my posting again

I have been busy... actually, I am home today for the second time in a week. Jacob is sick. I was sick on Monday (Jimmy was too...)

Jimmy is doing well. Apparently, he is singing a lot of Christmas carols at school, because that is all he is doing at home. We had Christmas parties this weekend (Friday and Saturday night) and we were able to get Shannon to sit both nights. Apparently Jimmy read "Green Eggs and Ham" to her visiting mother. He is doing a lot of drawing, a lot of writing (single words, out of the blue), and a little bit of talking. We are trying to get him to answer yes and no questions. He is so stuck on the structure of "I want" that it is proving to be difficult.

That's the brief update. More later.

A Done Deal

According to this and Senator Allen's office, it's done. The legislation had already passed the Senate, so it isn't going to be voted on again. Now, the president just has to sign it. I can't imagine he won't, though I will be relieved when the ink is on it.

ASA Applauds the House Passage of the Combating Autism Act
Wednesday, December 6, 2006

Legislation Provides Nearly $1 Billion in Additional Funding for Autism Research and Education

The Autism Society of America (ASA) commends the U.S. House of Representatives for its passage today of S. 843, the Combating Autism Act. This critical legislation authorizes nearly $1 billion through 2011 in federal funding for autism-related research, early detection and intervention.

“ASA applauds Chairman Joe Barton, Speaker Dennis Hastert, Majority Leader John Boehner, and our countless supporters in the House of Representatives for their work on the Combating Autism Act,” said Lee Grossman, ASA President and CEO. “We welcome the federal leadership on this national health crisis, and look forward to working together to effect dramatic change.”

S. 843, authored by Sens. Santorum and Dodd, first passed in the Senate on August 3, 2006. The legislation contains many important provisions to strengthen autism research and diagnostics, including a renewed investment to track the incidence and prevalence of autism spectrum disorder; to increase public awareness of early identification; promote the use of evidence-based interventions for those at higher risk for autism; and establish state-level clearinghouses for information on autism. For the first time, this legislation also calls for culturally competent information on autism.

“Autism has been neglected for far too long,” continued Grossman. “Thanks to the Combating Autism Act, federal agencies will have the resources they need to coordinate autism policy and to develop better diagnostics, treatments, and interventions.” ASA commends the hard work of its members and parents nationwide, who mobilized tens of thousands of emails, letters and press coverage to convince Congress of the importance of supporting this bill before convening.

In addition to the Combating Autism Act, ASA has partnered with many disability associations this year to ask Congress to support important legislation providing needed healthcare and respite services for the autism community. “This is only the beginning of our commitment to ensure that the federal funding is spent wisely and, in the most effective way,” said Jeff Sell, ASA Director of Chapters and Membership. ASA will work actively on the Hill in the 110th Congress to ensure further legislation for autism services and environmental health.

The Moment

Well, over Thanksgiving I had the moment I had waited for - my son telling me he loved me. So now, I have had the moment I have dreaded - he is in the sink getting cleaned off. He took a poop in the sink and was standing there, writing his name in poop on the mirror, singing "Santa Claus is Coming to Town." It was bound to happen.

Life is about the little moments.

Thank God!!!! Combating Autism Act passes the House!

"12:51 P.M. -
Mr. Ehlers moved to suspend the rules and pass the bill, as amended.

S. 843:
to amend the Public Health Service Act to combat autism through research, screening, intervention and education

Motion to reconsider laid on the table Agreed to without objection.
On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote."


The votes should be there for it to get passed in the Senate, but I have made the calls to be certain I have done my part. It is a happy, happy day. I would like to thank the Honorable Frank Wolf and his staff, especially Lucy Norment, for their support of this bill and my son.

My hands are shaking.

Town Hall Meeting

Okay, so I went. My friend was willing to come help me with the kids couldn't get away, so I decided to go solo. Big mistake. I got there first thing, to ensure that I would get the first spot - get in, get out, get done. Unfortunately, Jacob was done before the meeting got started. We had waited for 40 minutes and he was just tearing around the place. I had Jimmy in the stroller and some sweet man restraining Jacob while I attempted to speak. It was overwhelming - fortunately, I had handouts.

The truth is my life is equal parts Heaven and Hell. I have a beautiful child who can't speak. I can take him out, but sometimes he gets overwhelmed by it. I can't really leave him with a babysitter because no 16 year old is equipped to deal with a child who likes to play in his own poo. I work and I raise both my sons, but every decision that I make is defined by Jimmy. It isn't a fair way to live sometimes.

I want him to have every opportunity to have a real life and make a small contribution in the world. That's why I go to these things, that's why I ask for help. He needs a chance. We need a chance. I never express well enough how much I love this child. The experience of raising him, as difficult as it is, is an incredible blessing. Of course, that's when my house is clean, I have enough sleep, and I am not scrubbing his poo of the wall.

Now, what to do about Jacob... He's a good boy most of the time. I apologize to those who were at the townhall tonight. I didn't have a choice but to bring him. Sorry.

Legislative Townhall Meeting

Why do I find out about these things at the last minute? Well, I now have more plans for tomorrow night.

A trip to the doctor

I took Jimmy to the doctor on Friday. His stools are very loose. They always have been, but it is to the point where it interfers with finishing potty training. His therapist mentioned yeast - he is prone to those yeasty rashes and his poo smells funny. Found out that our doctor isn't a big fan of the yeast theory, but asked us to switch to lactose-free milk and did a full panel of allergy and some gastrointestinal blood work. It took four people to hold him down to take six tubes of blood. I felt like the worst person on the planet. He didn't have an accident, so I believe he was trying to say the one thing he knew should let him escape - He screamed "I want pee pee on potty" the whole time. It would have been comical, if he wasn't so upset. We will see what it come back with.

Special Needs Toys Website

An FYI for anyone who is interested... a lot of this is more than Jimmy would need, but it is a great resource.

Crazy week

Long weekends throw me off. I am overtired and have a lot of work to do at home. I have started exercising again because the physical demands of raising two boys is going to require me to lose some weight. I keep injuring myself (twisting an ankle, straining my back) since I am in such poor shape. I walked Monday and today and did Yoga yesterday. I have afternoon appointments the next two days, so I am going to try to get in to work earlier so I can walk before school. I might even get around to rejoining the gym.

Jimmy is using the bathroom at school and at daycare. Home hasn't been a problem in a while. Number two is the problem - that usually results in the only accidents. But it is amazing progress. His therapist has great success in getting him to speak. It is rougher going at home. And I am taking him to the doctor on Friday - we have a hunch that he might have a yeast imbalance, but I am unsure how to check it - I have a little research to do before then. I also finally put together Jimmy's wish list. I have a few art things, but to those friends who were asking - it's here via Amazon.com.

Hey, do any of my local readers know when they are doing the General Assembly Legislative Townhall meetings in Manassas Park?

I Love You!

After five years and four months of life, my son finally told us that he loves us. We were decorating the tree last night and Jimmy was having the best time. He kept running back and forth, putting all his ornaments in the same spot - when his back was turned, I moved them. But he was so happy. He ran over to his father, gave him a kiss, and kind of haltingly said "I love you!" I about fell over. I was so shocked about what he had done that I missed him saying it to me! No matter - it was a thrill. Not anything I don't know, but it was so wonderful to hear him say the words!

The tree is done and the shopping is mostly done. Money is always a concern (especially with going to Texas), but these boys don't need much either. I am just pleased that I have two amazing kids! Jimmy has made so much progress this year and Jacob is developing normally. As much work as that is, he is still amazing. His new thing is "Cars" - he has been bugging me for the movie for two weeks and I finally got it for him. We are twenty minutes into it and he is beside himself. He is dancing naked to Rascal Flatts - why, oh why does he not like clothes?

Have a great week!

Jimmy's Black Friday

Jimmy and I dropped Jacob off early and headed out to the mall. We couldn't get potty success out of him - I think he is afraid of the high powered flush. But we did visit Santa and he wasn't as squirmy. We actually got a picture with Santa - unfortunately I had to sit and be in it to get it to happen, but we did it. He was much better with him than he was on Sunday. Maybe it was a better Santa. I don't know. But it is a great picture, even with my overly shine face in it. If I can scan it, I will.

I think I am going to create another book list for the boys. They don't really need any more toys for the holidays (unless someone is willing to come put them together) and I have bought Jimmy art supplies - Crayola coloring set was an early bird special at Toys R Us this morning. I'll see if Amazon will let me post a link here.

You Can Dress Them Up...

...but you can't take them anywhere.

We went to my in-laws for Thanksgiving. It was pretty good. Jimmy actually started saying "sad" on the way up. Turns out it was his way of telling us he had to go to the bathroom - the whole "Dry pants happy/Wet pants sad" thing. He managed not to have an accident though.

When we got there, things went pretty well. Jimmy was not interested in joining us at the dinner table, but Jacob did. Jacob also manage to strip naked and run through the house before I managed to get him cornered and clothed again. I also crashed out on the couch for an hour, a rare occassion since I had extra hands to help.

After my in-laws, we went to my stepdad's sister's home for dessert. It was nice to see everyone again, even so soon after the funeral. They are lovely people. But it was pursuit mode of both boys, with my mom, husband, and I rotating. Potty success, a nice visit, but it ended with a very overstimulated Jacob pulling the towel rod off the wall in the half bath. I was suitably mortified and apologetic. She was lovely as always, but I am still embarrassed.

I have said it before - Jimmy may be autistic, but my normal kid is just killing me.

Tomorrow, I am banishing Jacob to daycare and taking Jimmy with me to meet my mom at the mall for shopping. We are going to practice toileting and walking while holding hands. I don't think it will be that crazy - I am looking forward to a day with just him.

He has autism. Like me?

So, yesterday at the post-graveside reception, I met a young man with autism. He is the cousin of my stepfather. I have know about him, but had not had the opportunity to meet him until yesterday. What a great opportunity that was!

He is 22, an apprenticed piano tuner and lives at home. But he was nice, polite, sweet, and happy. I could converse with him - his interested were sort of restricted in the same ways Jimmy's are, had the stimming behavior, likes to draw, and loves his recently married sister.

I kept kind of gravitating towards him, observing him in conversation or thought. Late in the afternoon, I sat down in the chair next to him. With a room full of family there, we started talking about my boys. I got around to Jimmy - we talked about their common interests and eventually I got to the fact that he doesn't talk. He asked me why. I said it was because he had a disability. He asked what kind. I told him that Jimmy had autism. His whole face lit up. "He has autism. Like me?" He was excited.

Until yesterday, aside from watching an interview with J-Mac, I could not put an adult face on autism that wasn't from the film "Rainman." I see that part of my life with a little more clarity - not that Jimmy will be exactly like him, but I now have an idea of what he could be. Of course, I would love for him to be like everyone else. But if he is like my stepdad's cousin, it's okay.

Goodnight

The last task of a very long day. I was off work today to go the Eloise's service. It was lovely. I spent the afternoon with one of my stepfather's cousins. He is in his early twenties and is autistic. What I saw in him gives me such hope. I lured him into conversation and told him about Jimmy - he gave me the greatest smile when he said "He's autistic like me." I will post the whole story tomorrow afternoon when I leave work. It was amazing.

Jimmy's Magna Doodle Art

Autism Makes the Cover of Newsweek

Again... although, this time it focuses on older children with autism. I often wonder what the future holds. It even discusses the role of siblings, especially with the eventual death of the parents. Sometimes, even though I really don't want and couldn't handle a third child, I think about it so someone will be there to help Jacob. It hardly seems fair what his future holds if Jimmy can't function on his own.

Right now, Jimmy is lying in the floor, stimming with a black puppy from McDonalds, barking.

Eloise

My stepfather's mother Eloise passed away last night. My stepfather and my stepgrandmother really came into my life too late to play either role, but both people mean a great deal to me. Eloise was wonderful to my mother and wonderful to me. Although not wholly unexpected, I am deeply saddened at her loss. I wish my mom didn't have to go through this again, losing a parent, even if it is a mother-in-law. I feel very sad for my stepfather and his siblings - the sense of loss was palpable in his voice today.

I was blessed to have known her, although too briefly and never well enough. Thank you for treating me with such kindness, warmth, and generosity of spirit. Rest in peace.