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.

Daycare issues, again

Yes, there was a post here. I took it down. I decided I want to give things a chance to be resolved. Jimmy is fine as is Jacob. I just hope that things improve in my daycare center soon.

Another Virginia Bill

Oh please say it will pass this year... oh please, oh please, oh please!!!

I read through it - it's Delegate Ken Plum. I love that man - he never wavers in his support for kids like mine.

Today's quote

"Dry pants happy, wet pants sad."

He said it this morning while waiting for the bus.

Six times!!!!

He peed at school SIX times today. He left in the same underwear he went to school in. Of course he pooped at Childtime, but it is still amazing.

Stewart/Colbert in 2008

This would be a great ticket...




Be sure to pick up this week's Rolling Stone. These two are nightly genius and a needed laugh at the end of the day.

Looking ahead to the 110th Congress

From the ASA newsletter...

Election 2006: Implications for Autism

ASA's Efforts to Pass Combating Autism Act Continue

Election Day 2006 brought a round of changes at all levels of government, as Democrats won control of the House of Representatives and possibly the U.S. Senate (AP and CNN are reporting today that James Webb has won the VA Senate seat), 28 Governor's mansions, full control of 23 state legislatures and partial control of 10 state legislatures. This Democratic wave has broad implications for many health issues, including autism, as Democrats have made health care a centerpiece of their agenda. In the early days of the 110th Congress, the Congress will likely consider legislation related to the reimportation of prescription drugs from Canada, allowing the federal government to negotiate for lower drug costs and efforts to fill the Medicare Part D doughnut hole. With regard to autism, Democrats may try to increase funding for biomedical research, public health programs and education programs.

That said, Democrats will be challenged to translate campaign promises into legislative realities. Despite Democratic victories in the House, the margins to enact legislation are very thin. Furthermore, Senate rules requiring a 60 vote majority for most legislative initiatives ensure that health care reforms will have to be bipartisan measures. While it is difficult to predict the direct impact this will have on autism, ASA will be sure to work with members of Congress on both sides of the aisle to continue to build support for autism related issues.

For a comprehensive analysis of the election and its outcomes, go to: http://www.sonnenschein.com/docs/2006electioninsight.pdf

Combating Autism Act

Despite the sweeping changes in the House of Representatives and the Senate, including the defeat of Combating Autism Act author Senator Rick Santorum, ASA continues its efforts to enact this critical legislation this year. Thanks to the outpouring of support from autism advocates all over the country, Chairman Barton has approached the autism community to identify a possible compromise on this important legislation. While negotiations are still underway, ASA is hopeful that they will yield a compromise that can be passed during the lame-duck session. ASA is working with Chairman Barton's office and other leaders in the autism community to ensure that a comprehensive, strong and effective bill is enacted. As more information about this potential compromise becomes available, we will be sure to notify ASA's members and supporters.

Media Coverage: Stalled Autism Bill Highlights Funding Rift

By Jeannie Kever, Houston Chronicle

In labs across the country, the increasingly vocal demands for more research into the causes and treatment of autism have been a good thing.

"People are convinced it's an important problem to work on," said Dr. Arthur Beaudet, a geneticist at Baylor College of Medicine. "You see it on the covers of magazines and on your TV screens. It's increasing the funding."
To read the entire article, in which ASA's Ennvironmental Health Advisory Board Co-chair Dr. Martha Herbert and ASA Director of Chapters and Membership Jeff Sell are quoted, go to: http://www.chron.com/disp/story.mpl/front/4307489.html

ASA Promotes Passage of Lifespan Respite Care Act

Important Legislation to Provide Temporary Relief for Caregivers

As previously reported, the Lifespan Respite Care Act of 2005 was passed by the House Energy and Commerce Committee and needs to be moved to the House floor for a member vote. This bill would amend the Public Health Service Act to authorize the Secretary of Health and Human Services to award grants to develop respite care programs at the state or local level and to evaluate the effectiveness of such care. The bill defines "respite care" to mean planned or emergency care provided to a child or adult with a special need in order to provide temporary relief to the family caregiver. The bill would also establish the National Resource Center on Lifespan Respite Care to: 1) maintain a national database on lifespan respite care; 2) provide training and technical assistance to state, community, and nonprofit respite care programs; and 3) provide information, referral, and educational programs to the public on lifespan respite care.

Research on families of minor and adult children with disabilities, including autism, indicates that one of the most sought after services is respite care. It allows caregivers to take a break from their caregiving duties to attend to sibling needs, the health of their marriage, and to themselves. ASA supports the Lifespan Respite Care Act and encourages families of individuals with autism to actively promote its passage with their Senators and Representatives. Press on the links to see a sample letter to the editor, a list of the bills’ cosponsors, and state-by-state numbers of family caregivers and the dollar amount of uncompensated care they provide released by the National Family Caregivers Association.

ASA Urges Increased Funding for Social Security Administration

Services for Those with Autism Affected

ASA signed on to a Consortium for Citizens with Disabilities (CCD) letter to William H. Frist (R-TN), Majority Leader, Harry Reid (D-NV), Minority Leader, Thad Cochran (R-MS), Chairman of the Senate Committee on Appropriations, and Robert Byrd (D-WV), Ranking Minority Member, requesting that the Senate provide at least the President’s budget request of $9.494 billion for the Social Security Administration’s (SSA) Limitation on Administrative Expenses (LAE) and that the Senate remove SSA’s LAE from the discretionary budget caps. SSA’s funding level of $9.093 billion, included in the Senate Committee Report of the FY 2007 Labor, Health and Human Services, and Education, and Related Agencies Appropriations bill, is $401 million less than the President’s request. This cut would exacerbate reductions in fiscal year 2006 when SSA’s budget was $294 million less than requested by the President for that year. If the $401 million cut for FY 2007 is passed, Commissioner Jo Anne Barnhart has indicated that SSA will need to take a number of significant actions including:

Closing of local SSA offices nationwide
Increasing serious delays for individuals
Reducing the number of continuing disability reviews (CDRs)

Services to individuals with autism and other disabilities would be hampered by such actions. The letter urged the Senate to appropriate the additional $401 million and to remove SSA’s budget authority from discretionary spending caps.

Call John Dingell

(202) 225-3641

This is the number for the Democratic side of the House Energy and Commerce Committee - Congressman John Dingell from Michigan is likely to be its new chair in January. Ask for their help in getting the Combating Autism Act of 2006 out of Joe Barton's hands and on the floor for a full vote!

I owe you guys a lengthy, Jimmy filled post and you will get one. Tomorrow.

Jimmy Update

It's early and I have to run to the shower, but Jimmy - the boy who keeps us up nights - has been sleeping through them for the past two. He is downstairs watching Zaboomofoo, giggling at that lemur. It's nice to see him happy and alert in the morning. Potty is still hit or miss, but we are all still trying.

Autism and the GOP - Why Many Parents are Fed Up... by David Kirby

Today is a very happy day. Joe Barton will soon no longer be the chair of any committee. A beautiful thing. The only thing that would have been better was if he had lost his seat entirely... Below is a insightful piece of what parents find themselves up against in Washington. My son's condition informed my vote and will continue to do so.



"Autism currently ravages 1-in-166 American children, meaning that 1-in-83 parents are also affected. Many of them, it's safe to say, will not be voting Republican.

Over the past six years, as the GOP wielded near total control over Washington, the autism parents I know have felt as welcome at the table as, say, Cindy Sheehan.

Thousands of moms and dads are convinced that environmental toxins - and mercury in particular -- played a pivotal role in their children's illness. But this idea has been very unpopular in George Bush's Washington.

Why? Just follow the money -- and follow the mercury.

Big Energy and Big Pharma are two of the GOP's most reliable cash cows. They also happen to be responsible for most of the mercury that ends up in our kids. And though the autism-mercury link has yet to be proven, Republican leaders really, really want the issue to just go away.

But those pesky parents won't let them. On Election Day, many of these highly motivated voters will repay the GOP for what they say has been six years of hostile indifference, at best.

After all, it was GOP leaders who inserted a secret rider into the Homeland Security Bill to dismiss lawsuits against companies that use mercury in vaccines. It was Bush Administration lawyers who tried to seal the records on all government data pertaining to the controversy, while also devising clever new ways to gut EPA regulations on mercury emissions from coal-fired power plants. And George Bush himself utterly reneged on his reelection campaign vow that all mercury should be removed from childhood vaccines ASAP (something to remember when getting little Johnny's flu shot this year).

Then came the Combating Autism Act, a sweeping (and long overdue) bill that made its painstaking way through the US Senate earlier this year. Careful consensus was crafted among all major autism groups to help create a nearly $1 billion bill which, among other things, would direct at least $45 million into NIH research on potential environmental causes of autism.

To his credit, Republican Senator Rick Santorum introduced the bill and worked to get it passed, but only with enormous pressure by autism parents and heavy hitters like Bob and Suzanne Wright of Autism Speaks, and environmental activist Deirdre Imus, (who was stunned to see a blubbering Bill Frist begging for deliverance from her relentless radio host husband, rather than worrying about the kids).

The bill passed unanimously in the Senate, only to get bottled up in the House, in the Committee on Energy and Commerce chaired by Rep. Joe Barton, of Texas. Barton had a bill of his own, to reform the way NIH gets and distributes research money. His bill passed the House, but is going nowhere in the Senate. Meanwhile, Barton refuses to let the autism bill out of his committee, despite the fact that it would pass overwhelmingly in the full House. Barton says he doesn't like "single-disease" funding bills, and promises to address autism in a new compromise version of his NIH legislation.

Barton says he is not opposed to funding for environmental autism research, but many parents can be excused for their skepticism: Among his top political contributors are electric utilities and pharmaceutical companies. A lot of money, a lot of mercury.

Barton may resubmit his bill - even if he is a lame duck Chairman - after Election Day. But it's a safe bet that his version won't contain any specific funding into environmental causes of autism. In the meantime, he is excoriated almost daily by Don Imus, whose colorful adjectives to describe the Chairman are gleefully repeated on autism blogs nationwide.

And now, at least 1-in-83 voters will have autism on their mind when heading to the polls. They will wonder why the Combating Autism Act has seemingly died in the House, and why leaders like Speaker Denny Hastert have done little, if anything, to save it.

I know many Republican parents who will be voting Democratic this year. It's not that the opposition party presents any great alternative. But, like with most Americans and Iraq, these fed up voters feel like any change will be a change for the better."

Election Day

Well, I got 8 get out the vote calls on Saturday and 4 on Sunday. There were some yesterday, but I just picked up the phone and hung up quickly when it came across my caller ID. I am hoping tomorrow morning finds Joe Barton out of the House leadership. That would put a smile on my face for days. If you want to help children with autism, you might want to consider voting Democratic today. I think the people in Texas are foolish enough to vote him to another term, so really the only way to run him out of his chairmanship is to flip the balance of power. Part of me hopes we don't lose my member of Congress in the process - Congressman Frank Wolf and his staff have been very good to Jimmy and I on this issue - but Barton really needs to be removed from the leadership today.

On the Senate side, I am glad to be getting rid of these ugly commercials. Man, I don't like either guy all that much, based on what's been said.

And a special shout out to my favorite local reporter this morning - go get some Starbucks and get going. Something tells me you and your colleagues are going to have a busy day.

Vote!!!!

(More tonight - it's parent/teacher conference day...)

Weekend update

Not enough house work done. I am recovering from a sinus infection and the post-nasal drip is making me cough. Jimmy continues to potty training. He has been halfway successful in pooping in the toilet. Suffices to say, you don't want me to define that any further. Jacob, on the other hand, is going through this willful regression where he is peeing everywhere but where he is supposed to. He is making me crazy.

Should be a great week. The election and Veteran's Day leaves me with three days of classes, one work day, and Friday off. I take the boys to the doctor Friday morning, but they are going to daycare in the afternoon. I am determined to have it to myself.

Cleaned out the cell phone

Jimmy playing at the park during the Manassas Park Fall Festival...



Jake on the swings the same day...



Jake playing tent in our papasan chair....



And one from the summer - Jake's love of Coldstone Creamery knows no bounds.

Run Down

My allergies are in full effect. My peak flow is too low. I am headed for the doctor in the morning and will likely spend the rest of the day on the couch. I wish I could sleep now. I will be coughing too hard to get much rest. I am waiting to meet my new doctor tomorrow to get some blessed antibiotics. Then life can return to normal.

No successes today in the toileting department, but he is in a really good mood. He hasn't had an accident since he got home either. I think he will likely use the potty here before he heads for bed. Right now, he is happily watching "Blue's Clues." He is such a giggle monster.

A Few Words...

When I first heard this statement, it was attributed to Nelson Mandela, a man who greatness inspires an almost spiritual affection in me. I later heard that the original author was Marianne Williamson. I still imagine Mr. Mandela saying them though.

Why I am posting them? Because I have two people in my life right now who make me think of them - the first is my son, obviously, but the second is another mother, a reader of this blog, and someone who I would love to call a friend in time. She inspires a lot of people in our community. You know who you are, even if you would never admit it publicly. Thank you for your quiet support, as an advocate, a mother, and a mentor.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It's not just in some of us, it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.

The Photo and More Success

Yes, they had a good time. Jimmy continued a successful run of potty with two productive trips today at school.

One more thing...

Jimmy had success with Shannon at daycare too - with toileting. Such strides - it's just exciting!

Halloween

Pics to follow. Jimmy was completely participatory in the event this year. We went to the city's party and then trick or treating around the neighborhood. Saw Chief Evans out and about - it's pretty neat to live in a community where the police caravan through the neighborhoods handing out candy.

Jacob will be eating candy for weeks. Then off to his first dental visit.

Goodnight.

The End of a Very Long Day

He has peed in the bathroom correctly four times today. He tried to poop, but he did it with the toilet seat up, so he fell in. He got out mid-poop and well... it got really messy from there. But it was success that I really didn't think would be possible. He is really doing this. I am so excited.

ESPN Story on J-Mac

CNN Segment with Rep. Barton and Sen. Santorum

It's broken into three parts. Part one on top, part three on the bottom.

Potty again

This morning while his therapist was here. Keep going Jimmy. I can't remember if I have said this before, but when he is potty trained, I might be able to get him into his school's afterschool program, which is $50 a week instead of the $140+ I am currently paying at his daycare for the twos part time rate. And he would get to be with age appropriate peers who model correct behavior for his age - instead of two year olds.

Keep going Jimmy!!!!

Joe Barton Turns Away Parent of Child with Autism

If you care about Jimmy, watch this video. Please feel free to forward the link as well to everyone you know. I can't believe Barton and he staffers think we are vile people. We are desperate parents, trying to get a good piece of legislation through. It is being stonewalled by one man - Joe Barton. That's shameful.

More birthday pictures

Jimmy, Jacob with his new Spiderman (sings and dances), and their preschool teacher Shannon with Jimmy.

Birthday Surprise

Well, today Jacob finally got his Spiderman birthday cake. This party was kid light because the Rists were laid low with pink eye. Bummer. But my mom showed up with Jacob's birthday surprise. My sister flew up from Dallas for the party. She walked in behind my mom. I caused quite the scene - I completely bawled. This had been in the works for a while. Apparently, my dad was supposed to make the trip with her, but he broke his sternum about three weeks ago - travel isn't a hot idea for him now. Probably just as well, because I would have died from the shock. Jacob had a great time, as did Jimmy and Evan, the other little boy who came. Light turnout and we still have a ton of stuff.

A really great day.

Caught You

Caught Jimmy in the act of using the toilet. We had the Dora potty seat in, so he was kneeling on the toilet bowl, aim through the smaller hole, soaking his shirt in the process. His pants were off, as they usually are these days when we are home. But he was doing it. I am thrilled. He does this on his own. Wow. I guess it is a matter of time now.

Jimmy's Day at School

Got a call at lunch. It took them three hours, but they got him to go at school. I am thrilled.

Guess What's Playing at My House Yet Again?

Ah, it used to be my favorite film...

Success Again...

Jimmy's therapist Rachel got him to use the toilet today. She is coming for parent training on Sunday to get a success here as well. When his teacher took him to the bathroom today, he called it by the correct term. And he hosed down the toilet bowl again tonight, just after I cleaned the bathroom. I am still optimistic. I said by Christmas at his birthday - that seems like too much to ask for now, but maybe...

Jacob's Birthday

This Sunday my baby turns 3. His party will be Saturday afternoon at Burger King. I have a Spiderman cake... I just need gift bags. I can't find them anywhere. He repeats three people over and over as potential guests - Maddy, Josie, and Tori. Tori is Maddy's mom and Jacob adores her. I have invited a few others, but apparently even my attendance is optional, as long as these three ladies are there.

Quick update

Jimmy has peed on the toilet. Not in it, on it. We haven't been modelling the whole standing up thing, but he has picked it up from his brother. So seperate from his sits, he is trying to do it on his own. Fewer messes to clean up, but my bathroom smells horrible. I will be addressing that tonight.

Autism and TV article

Time covered the controversial article, but had this to add at the end....

"The week also brought a more definitive, though less splashy finding on the causes of autism, published in the Proceedings of the National Academy of Science. A team led by Levitt found that a fairly common gene variation-one that's present in 47% of the population-is associated with an increased risk of autism. People with two copies of the gene have twice the average risk of autism; those with one copy face a slightly increased risk. The gene is intriguing because it codes for a protein that's active not only in the brain-the organ most affected by autism-but also in the immune system and the gastrointestinal tract, two systems that function poorly in many people with autism. Levitt estimates that anywhere from five to 20 genes may underlie the vulnerability to autism. There are probably many routes to the disorder, involving diverse combinations of genes and noxious environmental influences. Could Teletubbies be one of them? Conceivably, but more likely the trouble starts way before TV watching begins."

Jimmy's New Great Love

He has watched it five times since Friday. It has replaced Jungle Book in the old VCR in the kids room. I am not sure how I feel about this, although I am a huge fan too. He has watched Episode IV (the original Star Wars) that I am ready to introduce him to the Ewoks just to not have to hear the cantina music again.

I think I have just figured out the appeal. He flips out with excitement when he appears on screen.

Spring Soccer

We just got the e-mail about Spring soccer registration. I went ahead and registered Jimmy, even though this fall didn't happen. TopSoccer, the team for children with disabilities, was cancelled because one coach was travelling most of the time and a second moved away. This is a wonderful program for children with autism and other disabilities. I thought I would put it out there in case anyone reading was interested in knew of anyone who might be interesting either coaching or volunteering as a buddy. I keep meaning to ask Jimmy's gym teacher at school - he is such a nice guy - but I know he is busy as well. But we could really use a coach.

No Luck Today

Many accidents, lots of laundry, but no luck. I am not giving up hope. We will get there.

I read this today on MSNBC...

A mother's love

Toni Braxton startled — and moved — fans in a recent concert at the Flamingo in Las Vegas when she broke down in tears, discussing her autistic son.

“She was dedicating ‘I Wanna Be (Your Baby)’ to her son, and then she said something about how people have warned her that she shouldn’t talk about it, but said that he was autistic, and then she started crying and rushed off stage,” says a source. “It was very emotional.”

Braxton’s rep didn’t return a call, but fans have been writing Braxton in support.

“Please don’t lose heart,” one fan who also has an autistic child wrote to Braxton. “You’ll see great improvements with your little one. May God bless you and bring your little one around soon.”

I pray she doesn't give up hope either. When you are a mom struggling with your child, it's all you have got.

Light stayed on again today

He peed for his therapist Rachel again today. Still not doing it for me. We are trying to figure out how to make it achievable across environments. Yesterday, it was a three hour sit. Today it was only two. But who has the time to do it at home or school? We have to bridge that gap, but it is encouraging. I am excited at his progress. He is brushing his teeth too, a task to which he initially had a strong sensory adversion.

Jacob started with a fever at daycare today. Fortunately, I was able to get a sub for the afternoon. He has to stay home tomorrow, but my mother-in-law is taking this one for us. Unfortunately, that means I get to drive her back to Gaithersburg in rush hour. With the boys. Who are potty training. Yay me. At least I don't have to take the day. But Jacob feels so puny. He was just crying. Both times I got him down to sleep, it was in my arms. The power of Mom.

The light has officially switched on

At 6:15pm this evening, Jimmy's bladder officially erupted. Fortunately he was close to a toilet, which he used for the first time completely realizing what its purpose was. A joyful moment for all. All thanks goes to Rachel from the Matthew's Center. You are truly amazing.

"Night of Too Many Stars"

It was a great show. I am glad that they were able to raise $2 million - I know the money will go to help some very good schools in New York. A worthy cause...

1 in 166 - if you don't know Jimmy and don't know someone else with autism, you aren't going to have to wait long until you do. A cure would be nice, but education that is appropriate to their condition is needed now.

Okay...

Maybe the party was premature. I am trying to put privacy film on the windows in boys room (Jimmy keeps destroying the blinds) and Jacob runs in to tell me he has had an accident. I guess these things will happen.

Jimmy has been sitting on the toilet and has had one accident today.

Jacob is officially fully potty trained

He pooped twice in the potty today. We had a party for him, complete with a Happy Potty Day Scooby Doo cakes. Pictures to come. Those were some perplexed people in Giant's bakery, but they were nice enough to make us a little Scooby cake in about 20 minutes.

A first...

We have been trying to get Jimmy to go into a moonbounce forever. Today, at Manassas Park's Fall Festival, he did it. Had the best time. Someone had to go retrieve him to get him out. It's such a little thing, but a happy moment.

Spoke too soon... and "Night of Too Many Stars"

Shortly after my last post, Jacob pooped in the kitchen. But we are close.

Comedy Central is having an autism benefit on Sunday night at 8pm. "Night of Too Many Stars" will be hosted by our beloved Jon Stewart. I wonder if he would come do the Matthew's Center benefit in April? ;) We are looking forward to the show.

One Down...

Jacob is going peepee exclusively on the toilet now. He had a poop accident - he trailed pellets around the daycare - today, but not anything else. And he does poop in the potty. For all intents and purposes, as long as well continue to reinforce this weekend, we are there. He should be able to join the threes room after his birthday - he's on track to do it.

Happy happy happy...

Dreaming Big

So I am looking into when exactly Jimmy will be potty trained enough to get to go to the afterschool program. Yes, he isn't greatly successful yet - he's peed into a toilet twice. But I want to look forward to it. And why not? The afterschool program is essentially $50 a week. $50 versus the $140 that I am paying right now to have him "accomodated" at Childtime. Heck yes, I want him in the afterschool program. I wish they could just take him.

I also got a phone call that was soliticing donations for a place called Value Village. Turns out it is affliated with something called the National Children's Center, which has programs in DC and Maryland for developmentally disabled children and adults. I shot them an e-mail through their website at www.nccinc.org and I got a call back. Turns out they are considering extending their service area with programs in Virginia. I don't know much about them, but something is better than nothing.

Our respite provider has fallen off the face of the earth. Anyone want to come babysit my kids so I can clean my house?

Coach Gets Jail for Beaning Autistic Boy

Some people richly deserve jail. I think this man is among them.

To illustrate my point

I just finished giving Jimmy another bath. He had an accident while potty training. He snuck down to the basement and was fingerpainting on the wall with his own feces. He's five. I am not freaked out - in fact, I am resigned to the fact that he does stuff like this. But it still makes life difficult. Jacob doesn't do such things and he's two. I could say I want normal, but it isn't worth longing for. It doesn't seem like it is ever going to happen.

I am sorry I am so negative. It's one perpetual pity party today.

Frustration Level...

Extreme. I have been going off every which way and I trying really hard to put myself down. Trying to take some positive steps.

Still no success...

But we are still trying. With Jimmy. Jacob did go a few times yesterday and had a few accidents. Double the laundry.

Holding

Apparently Jimmy has become pretty good at it. He went the whole day at school without peeing or pooping. Not a single accident. Nothing. Until he went to day. Of course, they didn't send home the platinum padded underwear. Jacob is going to underwear and extra changes tomorrow. He has had enough success that I am willing to try.

Not much else to report. I was home most of the day with a stomach bug. Immodium is my new friend.

Thursday meeting in PW Co.

Since I know I have a few parents reading now, I thought I would post this...

Anyone in any state or county is invited to the October meeting of
the Prince William County Support Group For Parents Of Children
Diagnosed With Autism Spectrum Disorders

THIS MEETING IS SPONSORED BY THE AUTISM SOCIETY OF AMERICA's
NORTHERN VIRGINIA CHAPTER

OCTOBER MEETING: October 12, 2006 -7:00 pm to 9:00 pm

TOPIC: Financial Planning for Parents of ASD children

GUEST SPEAKER : Theresa Waddell

Theresa is the district manager of Waddell and Reed in Vienna, VA.
As an advisor, Theresa focuses on helping families with special
needs. She joined Waddell & Reed in 2000. Her mission statement is
to help her clients develop and implement a personal financial plan
that helps them to have peace of mind, clarity, and confidence in
their financial lives. Theresa and her husband Christopher, a
Waddell & Reed division manager, live in Arlington, VA, with their
three sons, two of whom have special needs. She is secretary of the
board of the Northern Chapter of the Virginia Society of CPAs; and
president of her Toastmasters club. Theresa and Christopher
volunteer for autism research and support organizations.

MEETING IS AT 8730 SUDLEY ROAD, ROOM 22, MANASSAS, VA

For more information about the meeting, contact Christine Hoch at
703-431-1558 or choch@comcast.net

U.S. government launches autism study

The study is funding for $5.9 million by the CDC. It's a small start in what needs to be done. Perhaps by identifying causes (and I am sure there won't be just one), better treatments can be pursued.

From the article:

"The study, the next of the agency's promised initiatives to look more closely at the disorder, would look for factors that may put children at risk for autism spectrum disorders and other developmental disabilities, the CDC said.

It said 2,700 children aged 2 to 5 and their parents would take part in the five-year study. Researchers will look for infections or abnormal responses to infections in the child or parents, genetic factors, the mother's reproductive history, hormone levels, potential gastrointestinal problems in the child and other factors.

"We hope this national study will help us learn more about the characteristics of children with ASDs, factors associated with developmental delays, and how genes and the environment may affect child development," said Dr. Jose Cordero, director of CDC's National Center on Birth Defects and Developmental Disabilities."

News from the front...

We continue to meet with resistance from Jimmy on the whole toileting thing - about three minutes in to his five minute sits, he starts to cry. But...

Jacob has been to the toilet three times today and has been successful three times. Has peed twice and pooped once. Of course, the poop was only because I caught him trying to squat in the hallway, but he was so happy when he did it right on the potty.

Hey, I take my joy where I can find it.

Enslaved to the toilet....

That should be our weekend, in four whole words. Trying to get two boys to use it exclusively. The safe money is on Jacob learning first. Jimmy hasn't been successful once this week.

In related news, I have to book Jake's third birthday party this weekend and throw out all his bottles. He is too old for them now. I have been losing the battle of the wills until now. I am resolute.

Day three

Well, I actually reverted back to diapers for the day to allow me to regroup. They switched him to underwear though at both the school and the daycare, which they promptly threw out when it got poopy. That's going to get expensive, especially after I bought 10 pair of the padded training pants at $4 a pop at JCPenneys. I bought every last pair they had in a 4T. It's not just the expense, but the availability of this stuff. These had better not go in the trash.

The school now has three complete sets of clothes, six pair of underwear (padded), several vinyl covers, three pairs of socks, and a stash of extra diapers. Daycare has bag of supplies as well. I have it organized and under control. For the moment. Laundry looks to be a nightly occurance for a while.

I need the weekend. Badly.

Day two of the potty....

4 soaked changed of clothes,
3 loads of laundry to do,
2 wet leather shoes to clean,
1 pantless boy running around my house,
and not a single success on the toilet.

Hey, it's only day two.

What really irks me...

Is that the Combating Autism Act might die in the House of Representives while they are busy tending to this nasty bit of dirt. I don't know who to be more angry at - the politicians or the media.

Potty Training Day 1

Feels like day one million. The school got the protocol and followed it all day. Instead of actually using the toilet, Jimmy held it until 2pm, when he soaked everything. He had another accident at daycare - the manager who was to be filling in didn't come down from Delaware. The one that was there couldn't access the center's e-mail and apparently didn't think to call the area manager. So he had another accident there as well. He was back in diapers when I picked him up. It was likely just as well, but he had a massive case of the explosive poops at about 7:15. It was nasty.

Feces - I know you guys come to read about feces.

I did call the Hill today. The three members mentioned in the post as well as my congressman, the Honorable Frank Wolf. I asked his office to ask him to talk to Joe Barton about getting the Combating Autism Act out of committee and voted on this session. I know things don't work that way, but I figured it was worth asking.

Manassas JM article link from May

A link to May's article on Jimmy!

Achy Achy

I have a ton to do still, but I am fleeing to bed. I am achy all over. I don't know if I have a bug or it's just my allergies, but I am miserable. Looks like I am going to have to get up extra early to get extra clothes and underwear ready for school or daycare.

My thoughts on my earlier post regarding the Combating Autism Act. I am extremely disappointed that it looks like it will meet an untimely demise. I will be making some phone calls tomorrow, those listed in the e-mail. I know many of you care about Jimmy very much - I would ask that, for him and all the other kids like him, try to find the time to pick up the phone in the next day or two. It would mean a lot to both of us.

Chairman Barton Stops Combating Autism Act - For Now

This came to me via e-mail. I don't think any party can claim to put children first when their leadership tries to kill a bill with over 200 co-sponsors.

Chairman Barton Stops Combating Autism Act - For Now
Remaining Hope with Boehner/Hastert

House Energy and Commerce Committee Chairman Joe Barton (TX) will not consider the Senate-passed Combating Autism Act in the House this session. He remains steadfastly unmoved and unimpressed by over 200 House members and a unanimous Senate. Without regard to the merits of our bill or the desperate state of our children, he indicated he would not even consider it without passage of his NIH Reform bill—an impossibility this Congress. In the end, his personal legislative agenda outweighed the needs of hundreds of
thousands of children with autism. He would only consider a bill devoid of any NIH provisions, including environmental research, and that is unacceptable to the autism community.

Let Chairman Barton know how you feel! Call Barton today and let him know that it is unacceptable for our elected officials to put personal, political interests ahead of your sick children! Call Rep. Barton today at 202-225-2002. Keep calling until you get through. Let's jam his phone lines and make ourselves heard.

Speaker of the House Dennis Hastert (IL) has thus far refused to intervene on our children's behalf. His Office of the Speaker website states: "At home we put children first, and Republicans are doing just that in the House". Ask him to back that up and put S.843 on the House suspension calendar! Call Speaker Hastert at 202-225-0600 and ask him to do what's right for children with autism.

Majority Leader John Boehner (OH) has been unwilling to stand up to Chairman Barton! Let him know you expect him to show the leadership it takes to do the right thing for hundreds of thousands of children and put S.843 on the House suspension calendar. Call Majority Leader Boehner at 202-225-4000 today and make your voice heard!

Our fight is far from over! Call all three representatives today and let them hear the full voice of the autism community. We will speak for our children, because they cannot.

Thank you for your support! For complete information about the Combating Autism Act of 2006, go to www.combatautism.org.

Next Week's Potty Training drill

This is the toileting protocol we are using next week and forever on... in theory. Our therapist is the potty training queen (she really is outstanding!) and I know he will get it eventually. But this is going to be rough. He will be in underwear, although he will have vinyl pants at school. My printer isn't working, but I have to get this run off. I guess I am stopping by the library tomorrow. I have to get everyone - school, daycare, and both of us here - on board with this. It has been discussed and everyone has signed off on it, but the reality of doing is different than the abstract "we are sending a protocol and dry clothes" statement.

• Jimmy should be taken to the bathroom every sixty minutes. It is suggested that the adult responsible for Jimmy carry a timer to remind them when to take him next. He should sit on the toilet for five minutes after each 60 minute interval.
• Use a timer with an audible bell and place it in view but out of reach of Jimmy during each sit. This will create a concrete beginning and ending to his sits and he will become more comfortable with the demands. Point to the timer and direct his attention to it while giving him praise for good sitting.
• Provide Jimmy with a preferred book or toy to enjoy while sitting. Be aware that items falling in toilet is very upsetting for him and smaller items may want to be avoided.
• If Jimmy is successful he may flush the toilet and receive a treat. Have the treat in your pocket or hand so that you may give it to him as soon as he begins to urinate or have a bowel movement. It is important that he associate the treat with the act of eliminating in the toilet. Tell him as you give him the treat why he is receiving it, and provide plenty of praise!
• If Jimmy sits with no results he may not flush. Please block all attempts.
• If Jimmy has an accident he should, if at all possible, play a role in cleaning up the accident. This can be done by giving him a paper towel and asking him to wipe up his accident. Even if it is a minimal amount, it is important that he become aware of what has occurred. After this, he must change himself. In a neutral tone, tell him that he has had an accident and cannot play until he is dry. Please have him stop whatever activity he is currently engaged in and do not allow him to continue until he has changed himself. Redirect him to locating clean clothes and changing them. Please provide the least physical assistance possible.
  

I guess I will have a lot to post about next week.

Jimmy's first phone conversation

Jim is working late. We talked to him on the phone. Jacob wasn't feeling chatty, so I put the phone to Jimmy's ear. He listened for a few seconds, said his chirpy "Goodbye" and walked away.

Daycare continued

So it seems our daycare center is on the brink (like within two to three weeks) of having a manager. It's a manager from Kindercare. Fortunately, it is not the last one from our old center. but it still makes me a little edgy.

Regardless, starting Monday, we will be putting Jimmy in underwear. He will wear vinyl covers at school for sanitary reasons, but the rest of the time, it's straight underroos and trips to the toilet. Jimmy's therapists seems to think that he will catch on sooner rather than later. I really, really hope so. That's a lot of laundry.

Met a nice candidate tonight

So we had a busy meeting schedule today. After picking the boys up from daycare, we stopped by the Republican meet and greet thing in Manassas. I thought about staying for the speeches, but the elevator wasn't working. I also had promised to pop by and see the budget presentation at the town hall meeting. But I managed to meet the candidate who is running for the late Harry Parrish's delegate seat. His name is Jackson Miller - he and his wife were lovely people. I think it is great that I have met two nice people, Jackson and his Democratic challenger Jeanette Rishell, running for this seat. I think either would do a great job. Of course, reality is this is a Republican district... I introduced them both to Jimmy and Jacob. Jimmy wasn't interested. Jacob thought he should take off his shirt for Mrs. Miller. Gotta love my kids. I hope to have the opportunity to speak to him in the future about autism and the challenges families face. Politics aside, they are really nice people. I think when you enter public office, you are giving a lot of yourself. I appreciate anyone who does that, regardless of party.

Then we dropped by the townhall meeting in Manassas Park. Jacob continued the naked theme of the evening of dropping trou in the doorway of the Governing Board chambers in the middle of presentations. Yes, this is my normal child. I am going to join him in our room to watch the Jungle Book 2. Dad's downstairs watching Finding Nemo with Jimmy. Yes, it's late. We are competing to see who can get a child to sleep first.

Oh, and more on the daycare debacle tomorrow... It's going okay, but, my, is this whole situation stressful.

Toys R Us Differently Abled Guide

I guess we will be using this to put together the Christmas list - though he is getting more books than toys, because that's what he prefers. It's a nice little resource.

Jimmy's so smart

We were sitting on the couch and we drew a big hand on his Magna Doodle and counted the fingers off, one through five. Jimmy took the little pen and wrote - in the scribble that is his emerging handwriting - 1, 2, 3, 4, and 5 on each finger. He is smart and tries so hard. At back to school night, his teacher gave us a list of all the different criteria of autism. It is so hard for me to believe that he is likely to test with an IQ below 70. It's not that his IQ will actually be that low, but without suitable language to express his thoughts and ideas, we don't know what he knows, what he understands.

Broke the news...

...to Jimmy's therapist about the management change. She had worked out a potty training protocol with the school and the previous management team. I am so nervous about getting another Kindercare situation, I can't tell you. I am honestly thinking I should just hire an afterschool sitter for Jimmy and be done with it, but relying on a non-center situation is fraught with its own worries. I have my feelers out for other possibilities for Jimmy. It's just so frustrating.

If anyone knows of competent daycare in Manassas for a mildly autistic child, where he can be with "normal" kids, please let me know. It really might come down to Robert Day, but I get a sick feeling in the pit of my stomach everytime I think about it.

Another childcare issue...

Both the center director and the director in training abruptly quit Childtime today. Resigned with no notice. Said there was a conflict with upper management. The staff will remain the same - Jacob has finally attached himself to a teacher there, so I am relieved and hoping not to have to make a change. On the other hand, I am terrified about getting another center director that is unwilling to accomodate Jimmy. In about two years, I went through seven center directors at Kindercare - it wasn't until number 7 that I got to someone who wasn't willing to help with Jimmy. My gut is just really shaky about this change.

I hate this, I really do.

Way to start off the year...

I had my first SEAC meeting tonight.... I think I may of upset one of the higher ups so completely that I could get thrown off. My husband would be thrilled. I had four meetings in the hours between 3:30 to 8:15pm tonight - two work, Back to School night, and SEAC. Maybe I wouldn't mind getting thrown off. Not like that would silence me - I would be freer to fight someways. Who knows.

Leeza Gibbons show

Referring back to an earlier post, my husband has YouTubed my appearance on the Leeza show. Joy!

Another Weekend

I don't know why, but they go by so quickly. We took the boys to see their grandparents today. Jimmy's been pretty chatty all weekend - he has also been drawing a lot. He took a few markers to the couch. Another argument for not getting a new one anytime soon.

TOPS Soccer Program

I haven't had the opportunity to take Jimmy to soccer yet this season (we were gone last weekend and both too tired from school this week), but apparently it is suspended until someone volunteers to coach. Ours has moved away. I am sort of bummed - even though the minimal time committment was difficult for us to swing, it was fun.