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.

Graduation Photos

From Jimmy's Pre-K graduation two weeks ago...

A Horrible Couple of Days

Still no offer - stuck in HR (although I have two additional interviews scheduled for the next week and I still think the offer is coming), a little child care drama (always unsettling), my ankle is still recovering, electrical problems in the house, and rain that never ends. I am so looking forward to my nieces coming this weekend.

I'll let you know when I have something nice to say.

A Renewed Committment to Potty Training

Jacob pooped in the toilet for the first time today. Jimmy is very interested, saying goodbye to the contents when he flushes. So I am back to doing sits again. Life will be easier once I get them both potty trained.

I am recoving from yesterday's fall. I really did a number on my ankle. Quite painful. Jimmy's fine.

Going for Mother of the Year

Well, let's start with last night. I am getting gas at Sheetz and somehow I lock the boys in the car. I keep my exterior composure, but inside my heart is racing. I call Jim and he is on 28 at the county line, but traffic isn't moving. I have my cell phone in my pocket, so I pull it out and call the police department non-emergency number. I am completely resolved not to panic because I realize I am about to see a whole bunch of people that I know - I just did the first responder training on autism. So after I hang up, I am just waiting to see who is coming to my rescue.

In the meantime, I am trying to see if I can coach the boys into unlocking the doors. I knock on the window to get Jimmy's attention. He knocks back. Okay, that's not going to work. I try explaining to Jacob. He tries, then it dawns on him that we have a problem. He begins to cry. I feel awful. They look hot - it's still in the 80s at almost 7 p.m. . The fire engine rolls up. Of course, it was three guys I had in my session last week. In my call, I identified myself and Jimmy's disability. They did exactly what I had mentioned - no sirens or lights when they came. Jimmy remained completely calm. They had the doors unlocked in less than a minute. These are just the greatest guys - I love the Manassas Park Fire Department. Absolute sweethearts - they, of course, reminded me that if I wanted to introduce Jimmy to them, all I had to do was bring him by the fire house. Yeah, thanks, I will keep that in mind next time.

This morning, I am fairing no better. I rolled my ankle coming down the last stairs, dropping Jimmy. He's okay. My foot is swollen, my knee is skinned, and my nerves are absolutely shot. But Jimmy's okay.

Jimmy Therapy Update

I got a voice mail from Jimmy's lead therapist. She is training a new therapist for Jimmy for the next two weeks. Apparently they had a great session yesterday. He was very verbal and participating well in the sessions. The therapy is so valuable during school breaks. School just ended a week ago and I have already noticed an increase in stimming behavior. The daycare is wonderful, but because of the ratio of children to teachers, it's a larger crowd and he gets lost. Transitions are more difficult. I don't enjoy summer for those reasons - I just feel like he loses too much. I am already looking forward to July's summer session.

Combat Autism

I recently became aware of the Combating Autism Act of 2005, a bill before the House and Senate in D.C..

This legislation will accomplish the following goals in the fight against Autism:

• Double NIH spending on autism research.
• Empower the Director of the NIH to act as an "autism czar" - developing an annual research budget on autism, based on the best science, and requiring that budget be reported to Congress.
• Create a screening program in all 50 states for the early identification of children with autism - short of a cure, early identification leading to early intervention with behavioral services provides the best available outcomes for autistic kids.
• Fund the efforts of the Autism Treatment Network to identify the best medical practices in the treatment of autistic kids.
• Continue funding of the epidemiological and public education programs on autism at the CDC.
• Authorize, overall, nearly 1 billion of federal spending on autism over the next 5 years - a multi-front war on autism from public awareness and early diagnosis to basic biomedical research.

Currently this bill only has three sponsors in Virginia; Congressmen Davis, Moran, and Wolf. Neither Senator has signed on at this point. For more information, click the link above. Please encourage your elected officials to support this important piece of legislation.

Saturday at Kings Dominion

Well, our little outing went pretty well. Their line policies weren't really conducive to our needs - the policies are set up to protect against abuses, but as a result they don't provide complete accommodation. The line for the roller coast was a horrible experience for him, but once he got on it, he did okay. By the time we got off, he was giggling like he had a great time. Jimmy gets overwhelmed by being around people in line - it's too much for him. But he is starting to like the rides, which is huge progress. In spite of the success, I think we are likely to limit our theme park visits to Sesame Place, WDW, and other parks with better accommodation policies. Kings Dominion's were entirely written for physical limitations and not conducive to our situation.

The water park was the huge hit. Jimmy rode the lazy river with me and just had the best time. We spent some time in the kids pool. I don't think he went down their slide, but he liked playing with the water spouts. The wave pool was a sensory winner - he really liked the feeling of bobbing up and down in the water. He even saw a hair band underneath the water and dove down to pick it up. Maybe he is more ready for swimming than I thought. His brother is the classic boy - Jacob loved it all.

King's Dominion

Yesterday's trip to King's Dominion-

Meeting Dora...

Jimmy and I in the last car. My mom and Jacob are sitting right in front of us.

Jacob is now laboring under the assumption that cars drive themselves. He wouldn't touch the steering wheel...

A completely chick thing to do...

The random posting of song lyrics. Copyright belongs to the Dixie Chicks. In my world, and seemingly in theirs as well, Mother's Day is everyday.

"Lullaby" from the album Taking the Long Way Around.

They didn't have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

I slip in bed when you're asleep
To hold you close and feel your breath on me
Tomorrow there'll be so much to do
So tonight I'll drift in a dream with you

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

As you wander through this troubled world
In search of all things beautiful
You can close your eyes when you're miles away
And hear my voice like a serenade

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up

How long do you want to be loved
Is forever enough, is forever enough
How long do you want to be loved
Is forever enough
Cause I'm never, never giving you up
Is forever enough
Cause I'm never, never giving you up

Next Matthew's Center Benefit

Matthew’s Center’s 4th Annual Golf Tournament is Quickly Approaching!
Early Bird Registration Ends Monday June 19!!

Tournament Info

Date: July 10, 2006
Place: Evergreen Country Club in Haymarket
Time: 9:00am shot gun start
Cost: $125/person if registered by June 19th
$150/person after June 19th

Fee includes: golf, continental breakfast, BBQ lunch, all you can
drink on the course, polo shirt, goody bags and awards.

Not a golfer?! We still need Sponsors and Volunteers!

All proceeds will go toward the purchase of an activity bus. We have
raised $22K and still need $20K to be able to purchase the bus. I hope
we can count on your support!!

For more information or to register visit our website
www.matthewscenter.org or call the school.

Jimmy's Birthday

Since we are about six weeks out from the big 5, I have been suitably agonizing about it. I have been working on a gift list, all books, to send to the grandparents and far away family. Books make him happiest. I only have about ten so far (click the post title for the current list on Amazon), so if my friends in library land have any ideas or recommendations, post them or e-mail me. We are pretty full on Seuss and he loves vivid illustrations and any manner of animal. I could also use some good social story books to help with transition, if anyone can recommend some.

As far as the party, I have finally decided to have one. I was unsure of who his friends are there, aside from one little boy. Mia, his former and Jacob's current teacher, assured me that he has friends and she would help with the guest list. I think we are going to keep it simple and do Burger King in Centreville again. We are opted to do Sesame Place (the original idea for the 5th) with him the first weekend after school begins. It should be less crowded. Last Saturday in July - keep it free people!!!

He Graduated Pre-K

I cried. A lot. Wearing shades on a rainy day. I am a fool. For more than just crying - I forgot a camera. Other moms took photos, so hopefully, I will have some here. I also met his new teachers today for next year and got a quick tour of the school for next year. Pretty exciting. His new teacher is very young, but I consider that a plus. I am looking forward to the change.

First Responder Training

A few months ago, I approached the local police and fire department about doing a first responder training, telling them about autism and sharing the resources and information I found. I have done the first two sessions yesterday and today and will be doing the third tomorrow. It's going pretty well. I am less nervous today than I was yesterday. Each day, I have had at least one person I have known from the departments there, which is sort of comforting. Today's group was a pretty full house. Apparently the police officers had court today, so a bunch were around for the training. They had questions, engaged on the subjects, and were really interested. I couldn't really ask for anything more. It is really gratifying when I can make this more than my cause, when I can get other people to invest in it too. I am lucky to live in a place like this, like Manassas Park, where I really get a chance to share this experience with so many different people.

Jimmy's pre-K graduation is tomorrow. I am really excited. A big day! I will post photos on Thursday.

Well...

I screwed up yesterday. Completely. It was water day and I forgot to send Jimmy's swimsuit with him. I realized my mistake on the way to pick him up from daycare. I nearly burst into tears. We had both seen the note, but neither of us remembered the event. I feel like I let him down on some level, even though he couldn't express disappointment to me. Even if he was, I wouldn't know... he asked me for a hug last night. "I want hug." Dad's heard that before, but it is new for me.

Goats

A little bit blurry, but this is the best of him actually feeding an animal. Keep in mind it took three annual trips to the Reston Zoo to get him to do this. I was very excited. He was so interested in the animals this time.

Wow, I suck

I am sorry it has taken me so long to post. The stress and distraction of looking for a new job is affecting my blogging. I had an interview yesterday, as a matter of fact. The job seems great, as do the people. The drive to Loudoun was better than I thought. We'll see... It would be nice to afford my student loan payments.

I chaperoned Jimmy's field trip today. I will post photos and a longer note tomorrow.

New Medication

We started Jimmy on Zoloft for attention. There is one school of thought that suggests that autism in somehow tied into serotonin levels. Given the history of depression on my side of the family, I am willing to explore that possibility. I can't see any perceptable difference yet, but it is likely too soon. He did give me a kiss today when I picked him up. That's been a fairly recent development. I'll take affection from that boy anytime! He is such a sweetheart.

Potty Training, Part Deux

Well, Jimmy and I made a few trips to the potty this weekend. He never actually used it. Keeping a diaper on him was impossible due to the heat, so I let him go commando around the house. He peed on my leg - twice. He pooped too - one he picked it up and put it in the toilet. The other was loose, he didn't bother it and I wound up scrubbing the carpet.

We did have a nice family outing the local pool on Sunday. He enjoyed it. Jacob got a little freaked out about the slides and the streaming water. A good time was had by all.

Jimmy and Potty Training

***ARGH!!!!!***

Primal scream. It had to be done...

Parent Training

At last night's parent training, we worked on putting on sandals and pulling the pants up. Simplistic stuff, I know. But as we worked with him, I realized he is completely capable of doing this stuff. It goes back to the communication piece. Listening to the verbal prompts and following through. Never did I imagine the basic would be such a challenge.

Well, it looks like we will be getting some respite from the CSB... I don't know how much and I don't want to count on having it until it is in hand, but I am really optimistic.

Bummer

The job the local school system that I interviewed for (the high school) isn't up anymore. I am assuming it is because they filled it. I wanted it very badly - and not just for the five minute commute. I really wanted to work in my community and in the high school. It's a great building with some money to actually develop a collection, a diverse student body - everything I hoped to do. I had so hoped to get the job.

We had Jimmy's IEP yesterday - it's official. He is going to Cougar in the fall. For me, that is SOMETHING to be happy about.

Twenty Years

When I got home last night, Jim told me that my best friend from high school, Christine, had called and had left me a message: her mom died. She left her sister's cell phone number, so once I got the boys settled, I called. It was unexpected, appears to be a heart attack, they were on the way back home. I remember her mom very well and liked her a lot. Christine and her sister seem to be beating themselves up about it - I hope they can get past that. I love them both too much for that and I am just sort of wrapped up emotionally right now, feeling for them in their time of grief.

But the phone, as sad as it was, reminded me of the joy of long standing friendships, where no matter how far apart you are geographically or how long you go between phone calls and visits, the basics never change. The pain I feel right now for Christine is as real as it would have been twenty years ago if it happened when I lived close by. Just now, I want to get on a plane. I know it isn't practical, but I want to go and hug her. It is a privledge and a blessing to have someone with whom you share a twenty year friendship. I guess its one of the perks of getting older.

Christine, I am so sorry about your mom. She is in my thoughts and prayers, as are you, Michelle, and Lorelei. Friends are the family you choose for yourself. You and Michelle will always be my sisters and that baby is another niece. I love you all. R.I.P. Dottie. Thank you for your girls - they mean the world to me.

Monday Morning Hangover

...Not literally. I didn't drink, but man, I am too old. I am just beat from last night. And Christine hasn't even gotten out of the airport. She is flying standby and every last flight is full. I am waiting by the phone to go pick her up. And she has finals tomorrow. Lovely.

Oh, and I had the wrong day for the IEP meeting. It is tomorrow, not today. Now I don't know if the Matthew's Center people can come, I had to call Kindercare and reschedule. I am pulling my hair out.

The concert itself was great. Yet another wonderful evening of revisiting my adolescence.

More later, once I figure out what is going on with my trapped-in-the-airport niece...

Ready for the Weekend

After yesterday's rant, I just wanted to assure everyone I am alive and well. My sister can't make it up for Depeche Mode this weekend, so she is sending her daughter instead. So it will be the two of us and the BFF at Nissan Sunday night. On the schedule for Monday - Jimmy's IEP meeting! A two hour fun fest. I wish they had a cash bar at these things, but I think most parents do.

ARGH!!!!

So Manassas Park Social Services called back with half of what I expected - the Medicare application was denied. Not a huge deal, since I wasn't going for that. What I am trying to get are MR waivers and then get on the list for DD waivers for when he turns six. I need respite and some help so I can get stuff done around the house. It is falling apart around me. I should qualify for the urgent waivers too because I have an extensive history of depression and, for as much as I love both of them, I am completely overwhelmed and seriously depressed. I know that. I just don't want to go back on medication again and have the side effects, gain even more weight, blah, blah, blah - although I would be keeping good company by joining the ranks of the millions of women in American on anti-depressants. Long story short, I have to go through the Community Services Board, which I tried to get help from back in October, to no avail. I couldn't even get an intake person to return my call. Am I supposed to take a day off work and just show up? What responsible member of society can afford to do that?

What I don't get is why this has to be so hard? In the past two weeks, two women that I know have had their sons diagnosed. The number of children diagnosed every day grows and there is nothing out there to help us beyond the schools. It's insane. Is this good social policy? No. It isn't even Christian. I need help with my kid. This situation is more than I can handle alone. And there is nothing.

Working My Way Through

I have to head off to the reference desk in a minute. I forgot to put SEAC bylaws on my last list, so I am working on writing those during lunch. In the realm of real work, I have to find a student assistant for the summer as well. I am almost done with the presentation for Saturday as well. It's like I am now playing catch up for everything I let go during the semester. Things will slow down. I have to keep believe that.

Then again, I bring it on myself. I went to the Governing Board meeting last night to preach all things autism - funding, first responder training. I wound up talking to the head of Social Services. MR waivers would be a good thing right about now - I can't believe they make you wait until 6 for DD waivers. But I guess talking to her in person makes the trip worth while. At least I get to scratch that off the list.

My List of Things to Do

My list of things to do, in no particular order...

_X_ Send proposal for ABA to local public schools system (causing all sorts of headaches for my friend in special programs)
___ Work on autism display for special education table at school fair on Saturday
_X_ Update Resume
___ Find job in line with newly acquired degree
___ Take up hobby at Dr. Bill's suggestion - he is right, I will burn out if I don't figure out how to relax and have fun.
___ Get Jacob new sneakers (already outgrown Christmas pair)
___ Clean house (forever on the list)
___ Do laundry (ditto)
___ Go to Governing Board meeting to give headache to board (sorry)
___ Call Social Services to see if there are any funds for Jimmy (pipe dream)
___ Prepare for Monday IEP meeting
___ Pick out outfit for Depeche Mode concert on Sunday (I am a girl at heart, after all)
___ Send EDW note, thanking her for Mother's Day card and being wonderful friend
___ Hang out with boys (always bumped to top, often keeping me from getting anything else done.)

And I thought I would have nothing to do after grad school!

Follow Up to An Army of One Wrong Recruit

The Army, in its infinite wisdom, released him...

Graduation

If anyone needs a librarian, I am looking for a job! In addition to finishing with a 3.93 GPA, I also won one of the schools "top three" honors - the Outstanding Service Award. Jimmy wasn't interesting in walking, but he did stand at the top of the stairs and clap as I walked across the auditorium.

An Army of One Wrong Recruit

Some idiot who was trying to make his recruitment quota enlisted an 18 year old with moderate to severe autism. They enlisted him as a calvary scout, gave him a report date for boot camp, and everything. Insane.

What I Want

Last night, I got a phone call from a woman with a grown daughter who is autistic. She was older, so I wasn't entirely sure where she was going with the conversation. She downplayed the benefits of ABA, saying what amounted to "let your son be who is going to be."

That's what I am doing. I am fighting to give him every opportunity to be who is going to be. That doesn't mean I should give him over to autism. If I do that, I have failed him and society, who will then be forced to pick up the slack when he is an adult who cannot contribute to society by holding a job and paying taxes.

What I would like to see is a bill that requires medical insurance and HMOs to provide habilitative coverage as requested by physicians for all children with autism under the age of 18. This would include speech therapy, occupational therapy, and Applied Behavioral Analysis. I don't think for a minute that it would get rid of all my bills, but it would make it fair. If the doctor requests 15 hours a week of ABA, then insurance would pay for that with what ever co-pay or deductible coming from us.

A good model for this type of legislation is available at the link above or right here:

http://scautisminsurancebill.blogspot.com/

This blogger I believe is a mom and lawyer who wrote the bill in question in South Carolina. The press coverage she links to does a good job explaining why this coverage is so important. If the insurance companies aren't forced to step up, taxpayers will be supporting these children in the future.

Grinding Back to Normal

Life is getting back to normal... Okay, scratch that. Nothing has been normal since I have a) had children or b) started grad school. As I still decompress from last week, I beginning the rest of my life. That involves looking for a job. I have another interview tomorrow for a school librarian slot. I remain hopeful.

Certainly, the salary increase would be a big help, especially with Jimmy stuff and student loans. I would also use some of the increase to afford Jacob the opportunity to do Hooked on Phonics at daycare. They enrolled him by accident at daycare. He loved him, but I had to pull him out because we really can't afford it. That's just the worst feeling in the world, especially when we spend so much on Jimmy.

I will also go pick up Jimmy's newest prescription tomorrow. We also are going to reduce the amount of casein he ingests by introducing him to rice milk. We have opted not pursue the gluten free because we really don't know what he would eat if we eliminated that from his diet. I would have implemented the milk already, but Giant doesn't stock it. It looks like Trader Joe's will be our only source for that. I am so glad they put one in Centreville. I will be interested to see if there is any notable improvement of the stemming or his attention.

Manassas Journal-Messenger Article

Well, the article is up. Jim and both read it and we liked it. I figure that "never shuts up" quote about Jacob will follow me for life, but I know I said it. He is never quiet. I wasn't sure if I would regret doing this article or not. Right now, at this moment, I don't.

Thanks to Alex and Donnie for taking such time and care with us.

Goal

With a little help, Jimmy made his first goal in a soccer game. Okay, someone helped him move his leg, but he seemed pretty pleased with himself. Jimmy did kick the ball down the field twice on his own. I was most happy about that. Jacob cheered Jimmy on, yelling "Go, go Immy, go, go."

Jake's crashed out on the chair. If I could get Jimmy's to take a nap, I would catch some shut eye as well. I am tired today.

A Wish List

I took Jimmy to his follow up with his developmental pediatrician this afternoon. Jimmy is making progress, but still is most delayed in expressive and receptive language. The attention still isn't coming along as we would like, so we switched medication. He also is re-writing his recommendations for therapy to include physical therapy and 15 hours of ABA a week. At this point, we are up to 8, with 6 of those out of pocket. Kaiser will get a copy of the letter and I will ask his regular doctor to write requests for all of it. We will likely get PT through Kaiser, since they have their own, but I full expect them to kill speech therary and occupational therapy again. ABA is a non-starter, but I am going to ask anyway. Kaiser will say no. They always do. This time, I am going to fight.

I am going to fight for everything. How can a physician make recommendations for treatment and not have a single one followed through? The school has no obligation to incorporate the physicians recommendations for his medical care into his school. They are there to education him, not to provide therapeutic services. Except these ST, OT, and PT are fairly commonly provided in schools, just not to the degree that is needed for a child with Jimmy's disability. ABA, which is available in Fairfax, isn't available here as part of the curriculum for him. Maybe because autism is a gray area that impacts both health and learning - that has to be why the buck gets passed back and forth. It has to stop somewhere. Doesn't it?

In the meantime, I have the wish list. Everything that needs to be done to help Jimmy. Now I have to figure out how I can make those wishes real.

A Nice Note

Yesterday, I got a note from Jimmy's teacher in his backpack. Apparently the aide had been out sick and there was a nervous sub. At some point, he crawled in her lap, cuddled her, and said "Everything will be alright." My child, who never says a full sentence other than "I want ____" used a full sentence to show compassion to a sub. I think any parent is happy when their child shows empathy for another - it is a sign that you are raising a good person. To have Jimmy do it means so much more - he is able to show empathy, but that is because he knows that he is loved, that he has an emotional connection to myself and others. Jimmy is a blessing. He amazes me everyday.

I had a job interview today very close to home. The people seemed very nice and I think I would love the work. I am keeping my fingers crossed.

That's the latest - off to soccer...

The Election is Over

Well, the election is done and over. New members are heading towards the governing board. One I have met and I do like. The other two I don't know and I am reserving judgment on whether their election is a good or bad thing for the community. The people in my city said it pretty loud - they don't like high taxes. I hope that the reductions that we all would like to see does not come at the expense of children in the community, especially my son.

On a personal level, I am extremely sad to see Noreen Slater voted out. While she can't waive a wand and make the money fairy appear to help Jimmy, she has provided more support and encouragement than any other single person in this community in my pursuit of services for him. I am deeply grateful to her for her efforts.

I turned in my very last paper two and a half hours ago. Tonight I am going to pick up my boys and play with them and have absolutely nothing hanging over my head for the first time in three years. It's done and I am happy. I may have to do additional courses depending on where I am employed, but I will likely never HAVE to go back a do a degree the way I had to do this.

Shirt Over Head

The last of the revisions on the papers... it almost over.

Jimmy was really tired last night. He feel asleep before we could give him dinner. I was pouring Carnation Instant Breakfast down him to make sure he had something. His lack of interest in food scares me. He did wake up early with me, so I was able to give him breakfast. And he put his shirt on pretty much by himself. I only had to put it on top of his head, but he did the rest. There is something his brother can't seem to do yet!

Your Morning Update

Well, the school is continuing to fund us through the end of the school year for Jimmy's in-home stuff (the part that they pay for, at least.) It means that we are on our own for the summer months, which is difficult, but at least we can formulate a plan of action. Summer is when he needs the help the most, because he experiences sort of a general regression in what he learns. Most children experience that on extended breaks, but it is a little worse for Jimmy.

We have our appointment with Dr. Conlon this week. I am likely to revisit the medication issue then. There has got to be something other than Tenex to try. I will also enquire about the casein issue again. I am still afraid to do anything to Sir Skinny's diet, but I have heard from too many people about it having made a difference to not at least look at the milk. Soy is a transition, but I think we can do it. Going gluten free is the more daunting prospect!

I am six pages in to my last paper. I have to get it to Shari before I leave for revisions, so I should get back to it. More tomorrow.

Tigger Too!

It's a slow news day around here, so here is another picture of Disneyworld. The boys and I with Tigger. Jimmy has initially terrified of Pooh. By the time when got to Tigger, he was still running around, but he was smiling.

Soccer Mom

Tonight was a really good night at soccer. Granted, Jimmy wasn't as into the ball as he was last week (and that is a relative description of his interest), but he never ventured far from the field. I could actually stand and talk to the other mom - when Jacob wasn't being a pill. As we were leaving, I was talking to another mom. Her child has a different diagnosis, but one of her girlfriend's kids is on the spectrum as well. She told me, she promised (her word) that it gets better. She describes a quiet kid of seven now who reads and writes and is a sweetheart. I believe we will get there. It's the path that is so hard to see.

In Knots

We have been working with a local reporter who is doing a story on autism for the local paper. He is a nice guy (that's not because he might read this), but every person who has had a negative experience with the press is giving me warnings about how bad this could or will be. I just realized that I am completely in knots, that I am not taken out of context, seen as a bad mother, or somehow trashed. I don't think this guy would ever, ever do that, but it has just dawned on me how much I have put myself out there. Me, the woman who completely lacks an internal monologue. Never thinking and the mouth runs. Joy!

Comps passed - check
Marketing stuff done - check (if Dr. Bill lets me slide on the whole slogan thing)
Practicum paper - tonight and tomorrow, turn in before I leave work
Public Library Management paper - this weekend and Monday, due on Wednesday

I am so close.

Still Here

I am in the throws of my last week of graduate school, so my posting will be sporadic at best. Some news - the school dropped our funding for the Matthew Center. Completely unannounced, although we were at the end of our three month cycle. I am really angry, but sort of resigned. I have seen their numbers, at least for federal funding of special ed, which were cut by 10%. It doesn't mean that I am not going to make a huge deal about it, but I am just unsure what can be done. Since we had some donations, I might restructure to get more parent training at home, because ultimately we have to raise Jimmy and it seems to be the most stable approach. It's just frustrating, my last week of school, the week before we begin potty training in earnest, and they are springing this on me. Like I don't have enough to deal with.

A Page from the Jungle Book

Taking a break from work and finishing up the marketing plan to share vacation photos. The guy in this costume was my favorite person that I encountered at Disney. I told him that Jimmy would be a little standoffish, but that he loved the movie. He got right down to his level and tried to get him to interact. What none of these photos captured was the slight smile as he recognized Louie. It was pretty cool.

Attempted Alien Abduction

Jake and Stitch were fast friends at Disneyworld. Stitch tried to make off with him at one point. After last night, I wonder if I should have let him. I had to take both kids to a meeting at the school administration building. Jimmy sacked out in the stroller. Jake poured his chocolate milk out on the carpet and hopped around in the puddle. He's insane. Yep.

Picture Time

A friend (the BFF actually) just reminded me that I am behind in uploading the promised Disney photos. Before I set off to do stuff for Dr. Bill, here is the last day with my mom, my sister, her family and the four of us.

Potty Training, Here We Come

As I continue to work on my last weeks of school, I am now researching my summer project - potty training! We are going broke having two in diapers. Jacob is ready and having some success at daycare. Jimmy physiologically is ready, but the communication piece is still missing. But he understands - he takes his diapers off as he wets them and wants a clean one right away. I went to the Talk About Curing Autism website and found some great guidelines. I will start incorporating them in the next week or two. The challenge will be getting some consistency in all three environments, but I am optimistic. If I get him potty trained, I have more (re: less expensive) options for afterschool day care next year!!! Between diapers and daycare, I could save $200 a month if I can get both kids trained!

More Circus News and Upcoming Elections

Well, after that strangers act of kindness yesterday, I ran off to the Patriot Center box office for a more pleasant surprise. Since the tickets I was planning on getting were $27 each, I expected that the gift would cover Jimmy's and I would pay for the rest. But they were having a campus special. Each ticket was $4 - as in the Final Four. Some sort of gift to the campus community. They are sitting us in handicap seating so we can use the stroller to contain Jimmy. Aside from being broke from Florida, the child management issues were keeping us from the circus this year as well. I think we will all have a great time tomorrow night.

I still have a few Manassas Park people reading this blog, so I will have to tell you about my latest e-mail adventure. Since I couldn't find information about the candidates for the Governing Board beyond the brief articles in the Manassas Journal-Messenger, I e-mailed the whole group. At this point, I have heard from five of the six. It's weird being a Democrat in a small jurisdiction that is 98% Republican. But it is an opportunity to think beyond affliation to the individual - who is going to best represent your ideas and needs of yourself, your family, your community on the local level. Because of my continued experiences with Jimmy and other children in this community, I think I have a special responsibility to cast my vote on May 2nd.

As I go through the process of trying to secure services for my son, I find myself dealing with federal, state, county, and city officials on a regular basis. I think the most important characteristic is that you can have in a community leader is accountability. I cannot tell you the number of times as a parent of a child with autism that I have had federal officials tell me its a state problems, local officials tell me to complain to the feds about funding. At some point, people have to stop pointing the finger to another entity and say "how to we address that need, right here, right now." Those are the people who I want to have represent me - who quit passing the buck and try get something done.

Of the six candidates that I have e-mailed, there is only one I am completely sure is that type of person. That person's sign will be on my yard by the end of the week. As a Democrat, I won't agree with everything, but there is enough common ground that I can do that much. The other two votes I am still weighing. But I would like to publicly thank the candidates who have taken the time to respond to me. I appreciate your effort.

Given my political affliation, one might expect that I could be a little dejected given the leadership of the last few years - I am still waiting for Gore to get sworn in. Really, it's a matter of time! :-) But there is such value to this process - in educating yourself about the issues, seeing where people stand, casting that vote. I hope people engage themselves this year and again in 2008 on the national level.

More tomorrow... I will try to get the Disney photos together and up on the blog.

My Brain Hurts

I am sorry I am neglecting this blog, but my brain still hurts from comps. I keep promising pictures, I will certainly get on that. But something really amazing happened that I have to share.

I am sitting at the reference desk and this patron I helped last week came up and asked me about circus tickets. I think her question had something to do with special education and I mentioned Jimmy. I can't even tell you the specifics of the conversation, but it must have made an impression. I looked up the prices for the circus and she hands me $25 to take Jimmy.

I will write more later. My head is spinning. As hard as this has all been, I feel so incredibly blessed to have so many people care about my son.

Crazy Wilson Motorcycle

I promise a longer post (complete with photos) about our Disney adventure this week. One quick story for you now...

One the way down, we stopped for dinner in South Carolina. There was a park next to the restaurant, so we let the boys run off some steam. Jimmy saw one of those rocking horse, bouncy things in the shape of a motorcycle. He called it "Crazy Wilsom Motorcycle." The reference, you ask? Crazy Wilson is a performer in Ringling Bros. Barnum and Bailey Circus. He does the finale, where he rides around in a steel ball on a motorcycle. We bought the circus DVD last year at the show and they have watched it pretty consistently for about a month. Both Jimmy and Jacob ask for it. I feel kind of bad - we spent so much at Disneyworld that we really can't afford to take them to the circus, which is in town (here at GMU) for the next week. Bummer.

Dream Big

GO MASON!!!!

Updates

I think my posting this month will be sporadic at best. I have a lot going on. Comps are on Friday the 31st. I have to leave our vacation in Orlando to take them. Jim's parents gave us a timeshare week down there. My mother is coming to help Jim with the boys while I take my exams. The following Friday, I will be in Memphis to present at the Tennessee Library Association Conference. I come home that night to wait tables at the Applebee's Pancake Breakfast I am hosting to the benefit the Matthew's Center. Saturday April 8th from 8-10 am. $5 a person. E-mail me for tickets!!!

I will post as I can, but expect more regular posting starting April 3rd.

I Didn't Get the Job...

The hiring official called today. I am stymied because they did a reference check and I know my references are solid. I think I was plan b. But I am heartbroken that I didn't get the job. It was so close to home, right across from the daycare. Working at that library branch was my dream from the time I started library school.

I am so down right now.