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.

Off...

To a parent teacher conference for JACOB... at the daycare. Joy!!!

I am putting you on notice....

My friend Stephen Colbert is updating his lovely board...

President Bush
Senator "Macaca" Allen
Senator John Warner
Congressman Wolf (you might get off notice for your support of the Combat Autism Act of 2006)
Governor Tim Kaine
State Senator Chuck Colgan
the winner of the 50th District race for General Assembly - either Jackson Miller or Jeanette Rishell
City of Manassas Park Governing Board
Manassas Park City School Board

You are all going on notice. I am tired of the buck getting passed regarding providing for children with autism. The buck gets passed down to local level, which screams poverty. I am starting at the bottom and working my way up, because something has to change and I don't believe for a second that change happens from the top down.

I Jacob...

I 2. I future felon...

Jacob is being quite the disobedient handful. I was worried about Jimmy getting bounced from Kindercare. I am now worried about Jacob getting bounced from Childtime. He keeps launching himself off the furniture there and getting hurt. There was a week where I could have papered the walls with the behavior referrals. I am at my wit's end with him.

Sesame Place

We went again and, of course, I left the camera at home. Had to use the cell phone instead. We spent a lot of time in the wave pool. Jacob rode the roller coaster twice and also went down a few water slides with me. Jimmy really didn't want to ride anything, so we stuck mostly to the water. He had a blast and even watched the parade this year!!!

The source of my anger...

As I was in Starbucks with Jacob today (who has a stomach bug, so we had to do the swap at school so Jim could get to work,) I ran into Jimmy's teacher from last year. She is a nice woman and I don't think I have given her enough credit for her work. I just felt a bit at odds with her. I don't think any educator can understand how painful autism is for a family. My husband ran into a family as we were leaving kindergarten orientation. The child had been in class with Jimmy over a year ago. He is starting kindergarten as a seemingly normal little boy. That was our hope when this all began, that it was just a function of catching up. It hasn't been. And it never will be. Jimmy will never be normal. He will always be different.

You get pregnant, you have every test, they tell you your baby is fine. You dream of all the things to come. And your baby isn't okay. They tell you they don't know what causes it, what can fix it, or what he will be like future. My son can't talk to me in any sort of meaningful way, other than to express what he wants sometimes. He has only told me he loves me once and it was because it was I just said it to him. He scripted it back to me. I don't know what he knows, what he understands, what he thinks of the world. He is five years old and still in pullups. There is little help for my son - medical insurers don't cover anything related to his condition, there is a waiting list years long for respite. The people that are there to help, the schools, are required to provide a "free and appropriate education," nothing less, but never anything more. I am not going to bash what I have gotten, because people have made some really efforts on Jimmy's behalf, but I fight for everything. It is exhausting.

These teachers, Jimmy's teacher last year and the year and a half before, have given so much. In my frustration over not getting everything I want or agreeing with them all the time, I don't give them enough credit. These are dedicated professionals. To say it is their job is minimizing their efforts. But this is my child. This is my life. I had dreams for my son - an education, achievement, a life, a marriage, children for him, grandchildren for me. To some degree, I think if I am honest and realistic, some of those dreams may be dead. I have hope that they are not, but I don't know how realistic it is. I don't think there is a teacher or clinician in the whole who can understand what an emotional pain that is to me and to my husband and our families. Not only is it our pain, but it is one that will be shouldered by Jacob. He is too young to completely understand his brother is different, but it won't be much longer before he realizes it. And ultimately he will be the one to shoulder this burden, one that he never asked for, after we are gone. That hurts too.

If my anger is misdirected sometime, I apologize. I just don't know where to put it.

Jimmy's First Day of "Real" School

Well, it's not like he can tell me how it went (writing that makes my heart a bit - what parent doesn't want to talk to their kid about the first day of kindergarten), but Jimmy seemed to have a good first day. His teacher said in his notebook that he ate cheese pizza for lunch and drew a face ("impressive" was how she described it) on the whiteboard in class.) He feel asleep on the bus room and slept until I picked him up from Childtime. We skipped soccer practice. Neither of us really had enough steam.

Tomorrow, Jacob will be wearing underwear at Childtime. One way or another, someone is getting out of diapers. Jacob first, I guess.

One more shout out...

What up, Mrs. Tickle?!!!

Inspite of my ranting and ravings and philosophical differences, I appreciate everything that people do for my son, my family, and I. His teachers, his therapists, his doctors, elected officials I harrass on a regular basis. I hope none of you ever have to walk in my shoes, but I hope each and every one of you gets to love someone the way I love Jimmy.

Kindergarten Orientation

I am exhausted from a long day of work and Mommydom, but suffices to say that the outlook is much brighter than I had hope. Dr. Miller, who I clearly don't give enough credit to, has given me a teacher who makes me feel comfortable, welcome and a partner in my son's education. There are three other kids in the room, an aide Jimmy knows well, and a male kindergarten with a special education background for mainstreaming. I am very relieved and optimistic about the coming year.

There's more, but it will wait until tomorrow. For now, I hear my pillows calling...

One more thing... I have completely fallen out touch with all my friends while everything has been going on. So to my daily crew which is lucky to hear from my once a week...

Julie - I am so proud of you with your new job and fiance.
Miriam - Hang in there with school and you too shall be gainfully employed. Tell Dot, Georgie, and the rest of reference that I miss them.
Amy - Pop already
Deshaun - Dinner. Soon.
Melanie - Ditto. And get me to go back to church with ya and don't take no for an answer.
Tori - ARGH! Primal scream done. Let's get drink. I miss e-mailing and calling.

I love you all.

Follow up from last night

So I talked to the head of Special Education. I sent him essentially what I posted yesterday, with some stuff added. He asked me to call. For the record, these people generally are very nice and compassionate. I reiterated my concerns and he attempted to reassure me. My proposal regarding the partnership has essentially been back burnered because they were told to cut $800K from the school budget because the assessments in Manassas Park were not as much as expected. The new teacher has a ringing endorsement from last year's teacher, an endorsement that obviously means nothing to me. He said if I was unhappy after a few weeks, we could talk. He didn't elaborate, but I think that means if I am unhappy, we can look at moving him to the next closest appropriate program outside of Manassas Park. Which might actually be Manassas, where I am working. Even though it wouldn't be my school, I don't want him in the same system where I am working. I am very different as a professional and librarian than I am as a mother. I don't want one spilling into another.

I feel a little better. Now I have to show up on Tuesday night to meet this new teacher. And I now have to start in on the local school board and the Governing Board trying to get this moved forward, money or not.

Stunned

Kindergarten orientation is next Tuesday at Jimmy's school. I went to the grades 1-3 orientation to try to catch the woman I understood to be his teacher this year in the single autism 5-8 class in my school district. We have been aggregating data on Jimmy's toileting habits in hopes of being able to try another toilet training approach. I wanted the opportunity to speak to her about this in advance of next week, so I could figure out if we were going to switch to underwear immediately.

So I get there. The principal gives us the grand tour and tells me that they have split the transition class, that the younger woman that I was told would be his teacher this year isn't going to be, that it will be an older woman who I met briefly. I fully admit I bring my own bias to this - my experience with older teachers and therapists leads me to think that they are less likely to incorporate best practice in dealing with children with autism. I guess if I am really honest, I think they are less likely to embrace the things I am doing with him and less likely to be willing to incorporate input or partner with Jimmy's therapists from the Matthew's Center. This is my child. I feel like on some level (even though intellectually I know these things aren't set in stone), I was promised the best and given the worst. I have no idea where my proposal for autism education in Manassas Park went - it was supposed be with the superintendent, but I have heard nothing. I feel like all my work on this with the Special Education Advisory Committee was for nothing. Nothing.

I am crushed. I have no idea who I am sending my non-verbal child to on Wednesday. Yes, I will go to the orientation on Tuesday. Yes, I will meet her, this new teacher. Will she be more like Jimmy's first teacher, who made me feel like a partner in this? Or will she be a more difficult person to partner with? Will she believe in my child the way I do? Maybe I will be wrong. But right now, I am lost, in tears and dreading next week. Moreoever, I feel completely betrayed by a system I am busting my ass for. I am pissed.

Sick of Poopy Playdoh

So everyone keeps telling me that digging in your backside and playing with what you find isn't uncommon when you are potty training "normal children." So what is it when they are putting it on a surface and running cars through it?

Toys Toys Toys

I get to de-toy the boys' room later today. They managed to cover their floor in toys and books by dumping every last items out of the toybox and pulling all the books off the bookcase. I need to pare down the amount of stuff in their room so this isn't such a problem.

Jacob got not one but two behavior referrals yesterday. Between that and his injury the day before from jumping off a playset onto the hard floor, I am starting to worry about him. He is two agressive, too rambunctious.

Jacob's Day at the Fair

Getting behind

All is well here. I have been really busy with work and leaving every day with my brain fried. We are still doing sits with Jimmy, but we aren't getting as far as we would like. So we are transitioning to dry pants checks. We will check his pants every half an hour to see that they are dry and reward for that. After getting a baseline of his bathroom habits, we make the switch from pull-ups to undies during the day. I expect to do extra laundry, but since he doesn't like to be wet or messy, he should be more motivated to use the toilet. I want him to do this - him going to school in diapers just isn't going work for long.

Teen Choice Awards

We were surfing before the Shatner roast and came across the Teen Choice Awards right as they were honoring J-Mac. He sounded so amazing on stage, seemed so normal (for lack of a better word) They showed the clip of his shooting, his teammates came out - it was really a beautiful moment. I can only hope that Jimmy has such a bright future. I was in tears.

A Reason to Move

I found this on a list-serv. Maybe my next stop in life is New York...

Sat Aug 19, 2006 6:12 am (PST)

Yesterday New York Governor George Pataki signed a new law that will require health Insurance companies regulated by the State of New York to provide the same health care procedures to people with an autism spectrum diagnosis that would be provided to people with other diagnoses. The bill will help correct the long-standing practice by health insurers of denying necessary health care to people with autism.

The bill also defines autism spectrum disorders as "neurobiological disorders." This definition is important becuse some health insurance companies have claimed that autism is a mental health disorder and therefore not covered.

Health insurance companies have used a variety of excuses to deny health care to people with autism.

The bill came to fruition after a four-year battle. The bill was conceived by Marty Schwartzmann, and Andrew Baumann, who is President of New York Families for Autistic Children. Both are fathers of sons with autism and both are residents of Queens. Assemblymember Audrey Pheffer of Queens introduced the legislation in the Assembly and Senator Charles Fuschillo of Nassau County introduced the bill in the Senate.

A coaliton of every autism-related membership organization in the state came together to press the bill as the top legislative priority of the community. "This just goes to show what parents of kids with autism can achieve if we pull together as team," said John Gilmore, a boardmember of ACHAMP and an organizer of the coalition.

Similar legislation is being developed for Congress to stop discrimination by insurance companies regulated under federal law.

The group that supported the measure include:


ACHAMP, Advocates for Children’s Health Affected by Mercury Poisoning
AHA/AS/PDD
AutismConcepts.com
Autism Society of America, Albany
Autism Society of America, Brooklyn
Autism Society of America, Bronx
Autism Society of America, Central New York
Autism Society of America, Fulton/Montgomery
Autism Society of America, Hudson Valley
Autism Society of America, Nassau/Suffolk
Autism Society of America, Manhattan
Autism Society of America, Queens
Autism Society of America, Western New York
Autism Speaks
Central New York, Families for Effective Autism Treatment
Cure Autism Now
Disability News Radio
FAIR Autism Media
Generation Rescue
GRASP, Global and Regional Asperger’s Syndrome Partnership
National Autism Association, National
National Autism Association, Central New York
National Autism Association, Long Island
National Autism Association, New York Metro
New York Families for Autistic Children
SafeMinds, Sensible Action For Ending Mercury-Induced Neurological Disorders
Schafer Autism Report
The Autism Autoimmunity Project
Unlocking Autism
UNYFEAT, Upstate New York Families for Effective Autism Treatment

New Playdoh

So as we continue to potty train, Jimmy has become more aware of his bodily functions. His lastest fixation is on poop. If he does it in his own drawers, he likes to reach in pull it out, and play with it like Playdoh. In the middle of the night. He has had two midnight bathtimes this week. Dad does the bath and I go in and wipe it off the bookcases or the wall.

This will be a topic of parent training this week for sure!!!

A Public Affair

Because autism gets a little boring, I have booked special entertainment for this morning...

A post later about poopy playdoh.

Day Two

I don't make it a habit to post about my work and this new job will certainly be no different. I am getting over day one nerves and got more engaged with day two. I have orientation sessions for the next four days. I know I have made a challenging choice, but I think the rewards personally and professionally will be well worth it.

Back to Jimmy's world. National holiday today - no parent training. I should be heading to the gym to celebrate, but I am too tired. I will go sign up tomorrow. I was up and down those hallways all day. Matthew's Center is doing a training session for a few of the staff members at Childtime. It's a more formalized relationship than the daycare and MC had in the past, but I think it is a very good thing. Jimmy is doing really well and Jacob is starting to adjust in his own time. He is also giving hugs on request consistently now to people he knows well like the Grandmas, Mia, and myself. It is a fantastic feeling.

The Big Goodbye

Well, after four and a half years, I am leaving my job today. As of tomorrow, I will get more time off, more money, and I will have a shorter commute and my first professional position (understanding the distinctions within the library profession), but I am very sad to be leaving. I attended Mason for my undergrad, but never had the experience of being a full time student during the day. I think working on campus for the past few years has given a taste of that experience I would not have had otherwise.

I will miss seeing my friends every day. I am going to miss this campus. It's a fun place and this was an especially memorable year with the Final Four. I am going to miss my student assistants, some of the best kids I have had the pleasure of meeting. I should do so well as to have my boys turn out like John D. or Jeff C.!!!

But... I am not going to miss my commute. The time that I will be saving will be spent going to the gym. I am not going to miss dragging myself in here on icy mornings - I'll take that two hour delay. I am not going to miss being a paraprofessional - at least not right now! More money, more time, doing something I truly believe in. And it's not like I am never coming back - I will have to take some classes in the near future to keep my job. George Mason will always be home - just not as much as it is now.

I feel pretty fortunate today.





Goodbye Mason. Thanks for a great 4+ years!

Regular Posting to Resume Tomorrow

Took a few days off, but I promise a lengthy post tomorrow.

Let me leave you with one thought - The Killers will not be experiencing a sophomore slump with their new album. I just downloaded their new single, "When We Were Young." Brandon Flowers takes me to my happy place!!!!

Fun with Blogger

Blogger tricks... another chance to see my favorite photo of Jimmy as I attempt to put it in the "About Me" section.

The Countdown

I start my new job in a weeks time. I won't miss the commute, but I will miss the people I have worked with for the past five years...

Jimmy and Jacob are continuing to do well in their new daycare. Jimmy's doesn't cry much when I leave. Jacob still misses Nelly, his older infant room teacher. I still feel bad about doing this to him... I guess I always will. Okay, "always" is a bit dramatic. How about "for the foreseeable future"? The therapists are happier with the daycare management, the daycare management loves us. Why am I still bitter about this whole thing?

On one of the listserv's I subscribe to related to autism, I have come to find out that Fairfax County basically has a whole set of services for children with disabilities that Prince William County does not. They have their own respite program and provides funding for assistive technology, where PWC has some modest funding for respite for people waiting for state services. I guess it would have something to do with the relative wealth of Fairfax County, but it's not like PWC doesn't have money of its own. I guess it's an argument for my whole charity/non profit thoughts of Monday, but you know, I really would love to do something that's not autism related. Maybe decorate my house or knit, just something. I just feel like it is fate that I will never have a hobby!

Poverty continued: the math

I figured it out. When the school year starts, I will pay $313.70 a week for Jimmy's afterschool (at a premimum because he isn't potty trained) and Jacob's full time daycare. Once Jacob is three and toilet trained, his rate drops, so the combined rate for the two is $298.70. Once Jimmy learns to use the potty, he pays the standard afterschool rate and my weekly bill drops to $259.10. The difference overall is $54.60 a week. That doesn't include the $25 a week in diapers, folks.

Do not get me wrong. I am completely grateful that Childtime can accomodate us and they are doing a wonderful job with him. Jacob really misses Mia and Nelly, but Jimmy transitions so much better there. He walks right into the room and doesn't shed a tear. I still resent the fact that Kindercare left me feeling like I had to move, ultimately to a more slightly expensive daycare, and that the toileting issue makes such a difference in the rate.

Poverty, thy name is autism

They finally finished processing Jimmy's paperwork at Childtime. He's legal, so to speak. We will have to pay a higher part time rate as long as they have to accomodate the toileting issue when he goes back to school. It's about $20 more a week than Kindercare. Between Jacob and Jimmy's respective rate increased, this switch is costing us about $180 more a month right now than what we were paying. But I am not worry about them flaking on me at any moment and Jim is going to the toilet every hour. It's more than I had at Kindercare. But I feel pretty poor at the moment.

In related poor-ness, I called about the DD waivers list. Even though I had been told that he could be processed onto the list at 5 years, 4 months, they told me today that they can't begin the paper until age 6 and I have to get a psychological eval and IQ test. Somehow I don't think that will be free either. Yes, poverty, thy name is autism. Oh, and I was told that we might not get off the list until adulthood. And that is because we are classified urgent.

I am seriously toying with the idea of starting a charity/non-profit to meet some of the needs of parents of children with disabilities in Manassas Park and possibly extending it to Manassas. Approach businesses and benefactors, do some grant writing to get funds for parents for children with autism and other disabilities that aren't covered by medical insurance for needed things like respite, adaptive equipment and technology, and the like. Insurance companies don't help, politicians are full of hot air, and state agencies aren't funded adequately to meet our needs. What the hell are we paying taxes for again?

Surviving Week One

Week one of Childtime has come and gone. Jimmy is happier. Jacob is coming along. On Thursday, we were finally notified that legal signed off on Jimmy and we were permanently enrolled. It is a huge relief. I still have to sign a waiver that spells out that if he is a risk to others with appropriate notice. It's not a big thing - certainly better than the policy that was stated to me by Kindercare that it could be done with no notice. I couldn't function under those terms without worrying. This is an improvement, but I still believe that it shouldn't be such a big deal.

Jimmy's IEP meeting was on Thursday. It was the triannual meeting as opposed to the yearly meeting. The biggest change is I let them include the autism diagnosis, switching the educational label from Developmental Delay to Autism. I know plenty of parents are wary of making such a change, but I look at him and I can't deny that is what he is. We didn't get here from neurology or mercury, but if you look at his symptoms, it's correct. Could that diagnosis change when he gets older? Sure, anything is possible. If that ever happened, I would fight to have it removed. But it is completely appropriate now and the forseeable future. They put some additional services in his IEP as well, so it felt like a win.

Next week is my last full week in my job. I have a lot to clean out in my cubicle. I am still reading up for my new job, still excited, still nervous. Time seems to pass so quickly these days.

Stephen Colbert's Assessment of Wikipedia

As a librarian, this is a hoot!

CNN Article

CNN recently posted an article that is a decent overview of autism. It's worth a read - not like anyone reading this blog is completely unfamiliar.

Day three of the new daycare. Jimmy is very happy and Jacob clearly isn't. I just feel like I can't win. I am writing a letter to Kindercare today or tomorrow regarding their disability policy and likely addressing the issues with that specific teacher as well. I am relieved knowing Jimmy is in better hands, but I am very unhappy with the situation.

Childtime

As you can see from the photos, the birthday party was a big success. Everyone had a great time. Jimmy's birthdays are always more adults than kids, but he liked the Thomas cake. We actually got Jimmy a cookie cake to eat, since he won't eat real cake.

The bigger news this week has been the transition to Childtime from Kindercare. Jimmy's doing well for him. It has become very obvious from the reports from his therapist about his separation issues that the problem was the teacher. By all reports, she was frustrated with him - he was becoming increasingly upset when the therapists left and the teacher did nothing to comfort him. I am angry - from the pit of my stomach, in a way that I have never been angry before, I am angry at that teacher. I am also angry at myself for not recognizing why my child was so upset. This is the first time in life that I have honestly felt like I truly failed him. Yeah, it was their disability policy and the way the center was interpreting it, but ultimately it became a decision because Jimmy wasn't happy.

So, I moved him. And his brother. Away from a bunch of other Kindercare who we really loved - Mia most especially, but Nelly, Juana, and Carmen as well. Those women shed tears when we left - I have shed many the past several days as well. I feel like I have taken Jacob away from everyone he has known and love to make sure Jimmy is happy. It doesn't seem right and I feel lousy about it.

We've moved. My only complaint with the new center is I still don't know that Jimmy is officially accepted yet. We are still waiting to hear from their corporate office. I have been working on this for over a week. Why does it have to be so hard? Why does everything have to be so difficult because of the word "autism?"

Birhtday Photos continued...

The cake...



The birthday boy...



Another of the man of the hour...



Jake and Maddy coming down the slide...

More photos

Birthday Photos

They are coming shortly... Blogger is giving me grief today.

Kiss My...

...arm. Jimmy just walked up and kissed his brother on the cheek. Then he turned and kissed my arm. It was so sweet. It's the little things that just feel so huge at times.

New Daycare

Well, hopefully by next Monday, the boys will be starting a new daycare, Childtime. I don't think I have filled out this much paperwork since getting a mortgage. As an accomodation to the toileting issue, they will have him in the twos with his brother, but he will be taken to the bathroom every hour. It's all I wanted. Age appropriate activities will be delivered to him and he will have the opportunity to interact with his peers, but the twos will be his base until he is done training. On paper at least, it is a better situation than we had. It is also a relief that the matter is finally settled.

We had Jimmy's check up yesterday. He is 42 inches tall and 38 pounds - a skinny boy, but healthy. I can't believe he is really five years old. His party is on Saturday and we are all very excited. He is just such a great kid. I am so proud of him.

Happy Birthday Jimmy!!!!

I can't believe it's been five years. More tomorrow.

Small Successes

Jimmy peed in the toilet today. I think it's only the second time in about two weeks of training, but I will take it. It will get better... I would be so happy if he had it down by Christmas. I know Jacob will. I think he will be done training by his birthday. He gets it, he really does. Jimmy does too - it's not something he wants to do right now.

Cure Autism Now Update

I got this e-mail that I thought I would share....

Cure Autism Now Celebrates the Senate HELP Committee
Passage of the Combating Autism Act of 2006


On Wednesday, July 19, the 20 members of the Senate HELP Committee unanimously voted to send the Combating Autism Act of 2006 (S.843) to the full Senate for approval. This represents a tremendous victory for the entire autism community, including the many organizations that formed a coalition to advance this legislation. We anticipate the bill will pass the Senate by a “unanimous consent” vote prior to the summer recess, which begins August 4.

With the leadership of our original sponsor, Senator Rick Santorum (R-PA) and his staff, and the assembly and involvement of the autism community consensus group, the CAA of 2006 has emerged as a historic $1 billion single-disease authorization bill for autism that serves as an acknowledgment by the United States Senate that autism is a national public health crisis.

The Combating Autism Act of 2006 was originally drafted by Cure Autism Now’s Government Relations representative and Chapter Leader Stuart Spielman, and much of the legislative strategy was planned and implemented by CAN’s lobbying team. The CAA of 2006 began as a reauthorization of the autism section in the Children’s Health Act of 2000, which was also introduced by CAN and became the first landmark piece of autism legislation.

Cure Autism Now would like to thank all members of the HELP Committee for their unprecedented commitment to fulfill the promise of meaningful research, timely intervention and an accelerated path to a cure for autism. In addition to our champion Senator Santorum, our gratitude goes to HELP Committee Chairman Michael Enzi (R-WY) and Ranking Member Edward Kennedy (D-MA), sponsor Christopher Dodd (D-CT), Senate Majority Leader Bill Frist (R-TN) and their tireless staffs for their tremendous effort in crafting the Combating Autism Act of 2006 .

Once the bill passes the Senate, our attention will shift to the House of Representatives where we have 136 co-sponsors to date. Visit www.combatautism.org to find out if your Congressman is a co-sponsor. If not, please contact them while they are in district for the August recess and ask them to co-sponsor the Combating Autism Act of 2006 (H.R. 2421).

Cure Autism Now thanks the many autism organizations in the community that have actively participated in these efforts and we thank our families and friends who have reached out to their legislators to help us combat autism.

Heading Home Early

I am leaving early to meet the cable guy - our digital has been sporadic at best. We use them mostly for the kids educational channel and the On Demand. Actually, On Demand is simply the best thing ever. For a while, they had the Baby Bumblebee videos, which are noted for stimulating language in children with developmental delays. Jimmy loved them. Right now, they have a few children's selections that deal with trips to the aquarium or the zoo. Again, Jimmy's favorite things.

While I am home, in addition to some much needed clean up, I am going to be reading up for my new job and working on some documents for my old one. And so it goes... I am less than a month out from the big change. My excitement is also being joined by a serious case of nerves!

Because Life Can't Be All Autism

One of my great passions in music, particularly the popular variety. The Killers new single was leaked to PerezHilton.com. Check it out... it will likely be up for the next two days - just click the link. It's fantastic!

Daycare Update

Well, we are still there, but I have a copy of Jimmy's IEP with a local competitor. The manager is at her corporate office this week, to see what accomodations can be worked out. I am waiting to hear from her. I would like to move Jimmy, but I am unsure about Jacob. I think he would really miss his friends, but I know both brothers will miss each other if seperated.

Part of me thinks this shouldn't have to be so hard, but I appreciate the thought that the potentially new center is giving it. I think every working parent has daycare problems - mine are fairly specific, but I know so many moms that are frustrated by it. There are tons of possibilities in Manassas, but which one is the right one. Daycare Dilemma - there's something to write about.

I hate daycare

I am completely frustrated by my son's daycare. They are part of a large daycare corporation and both boys have been there for almost two years. We have been pretty happy with them for the most part, though they are not trouble free. There have been several staff turnovers, most notable six center directors But we have weathered them all. Within the last three weeks, Jimmy's teacher, the center director, and the program specialist have made several negative comments about it "might not be the appropriate environment for him." I think it all started coming up after I insisted on potty training. They said no. I contacted the disability coordinator at corporate. She spoke to the center director and assured me it would be done. They have yet to sit him on the pot, according to a note from the teacher.

Today, they called me (I missed the call, but called them back) to say that he was flipping out when he got off the bus, he was running around screaming, taking his clothes off (remember, the diaper rash) and so on. Someone said that he stomped on another child's head, although the center director never said it to me. I picked him up early and spent most of the afternoon crying. The rich irony in all this is he will never have to be in full time, long term daycare after August. He will have full days on my in-service days, but my breaks will be spent with him. All I wanted to do is to make it through August without changing centers. I don't think I have that option now.

I talked to one local center. They made no guarantees, but are considering it, with the advice of their home office. My other option is the center run by the local ARC, for severely disabled children. It isn't much of an option, but if it gets me to September 6th (Jimmy's first day of kindergarten), I will do it. I can't imagine a few weeks there would make him low functioning suddenly. I would just eat myself alive with worry. Oh, and hate myself for the rest of my life. Not that I am not completely full of self loathing now - I am leaving him with a teacher who I really think doesn't like my kid, at a center who's management I don't trust. I don't know what else to do.

I am not a good mother.

Day Blah of the Month of July

Jimmy's rash seems to be getting better. We are doing sits with him on the toilet. Jacob is doing pretty well with it too. It will just take time. I am looking at preschools for Jacob in the fall, in case I try to change Jimmy's situation. It just depends. Things for right now are stable at the daycare, but I want to know there are options.

I might take the boys out after work for haircuts. They need them desperately. Work today is tying up loose ends here and doing paperwork. Blah.

Can't Sleep

We are back from our weekend away at Bayse. Jimmy has the worst case of diaper rash ever. Since he isn't potty trained, he is turning five in diapers. Can't really train someone if they can't ask to go to the bathroom. But this rash is the worst thing I have ever seen. I am airing him out, letting him run around without a diaper. We haven't had any accidents so far, but it seems inevitible. The chafing was so bad, he was walking around bow legged and crying. I would rather be on the carpet with a can of Resolve than hear him cry like that. It just hurts him. I am up, waiting for him to drift off so I can slip a diaper on him. I don't know what else I can do.

Our current daycare center has no interest in trying to schedule train him - it requires 15 minute sits every 60 to 90 minutes. I have to find someone that can, my Jimmy's sake and my own.

Busy Week

I am still reeling from all that has been happening lately. I signed a contract, returned the other, made a deposit for Jimmy's birthday party, writing thank you notes and invitations...

I accepted an offer from Manassas City Schools to be a school librarian. The school is less than two miles from my house and I will have my breaks off with the boys. After all of the drama I have endured about what constitutes an appropriate daycare for Jimmy for the full time breaks, that issue is off the table in the future. I will find part time sessions for him to attend during the longer summer breaks (before and after summer school), but the number of days I will need covered on a full time basis will know be few and far between. I will keep Jacob part time in the summer as well. But I can now take them to the pool in the summers, be freer to travel with them, and just spend more time being a mother to them. I gave up an excellent opportunity at the community college to work with some outstanding people, but I went with what was best for both boys. In the end, I know not worrying so much about them and where they are and what they are doing is what makes me happiest. Plus, this is a great opportunity professionally for me - I would be remiss if I didn't mention that.

Jimmy's birthday party is set up for Burger King on the last Saturday of the month. Lots of adults but a few kids coming this year too. It should be fun. He know the song, he understands birthday party, so I am hoping this will be his most enjoyable birthday yet. Perhaps McDonalds or Chuck E. Cheese would be more glamourous locales for parties, but BK tends to be more quiet and less packed, which is a better scene for Jimmy. He has had a great year and I want to celebrate that. I have gotten some great reports from school on the first two days of the summer session. Apparently, he is following direction much better. Wow, I wish he could do that at home.

Happy July 4th!

What a difference a year makes! Jimmy is no longer terrified of fireworks. For the past two years, we have been able to take him out to watch the 4th of July festivities. This year, he was thrilled by all of it. He was engrossed by the Manassas and Manassas Park displays, visible from our neighborhood, but he was not the least bit put off by the noise of the Whistling Petes from the local stands. Last year, he cried until we brought him in. This year, he cried when it ended. So incredibly different for this kid.

Jimmy's First Teacher

We had a brief visit today with Jimmy's first teacher Bethany. Two of the other moms, who have kept in better touch with her than I have (sadly), invited us over to a small get together. She is living overseas with her husband currently. I had told Jimmy once or twice that we were going to see her, thinking that it was unlikely that he would make the connection. He was initially more curious about the new place than seeing his former teacher again, but by the end of the visit, he said her name a couple of times. He cried for about 20 minutes after we left.

It was wonderful for me to see her as well. She was one of the first people to really give me hope about Jimmy's future. That hope is still somewhat unclear, the future still seems more undetermined for him than most children (not that you can know a lot about someone's future at the age of five, but I can still have hope and think of his future, autism or not. That is Bethany's lasting gift to us both.

I am off to bed. Happy Fourth of July!

Two Job Offers

Yes... when it's official, I will post the details.