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.