Rest in Peace

Our beloved Pop Pop - Jim's grandfather, the boys great grandfather (he is pictured here with a much younger Jimmy) passed away last evening at home, in his easy chair, watching TV. He was 96. It was a privilege and blessing to give this great man two great grandsons. I know Jim will miss his grandfather very much and I will too.

My New Hero

I commented on Lorri's blog and hope some of my readership will check it out. This mom/lawyer has drafted a nifty piece of legislation requiring insurers to pay for ABA and other necessary treatments. Go Lorri!

Momentous News

The kids spent the day at Kindercare, so I could have some time with my niece in town, Jake wouldn't miss his music lessons, etc... When Christine and I went to pick them up, they told me that Jake successfully used the potty for the first time. Almost exactly at 26 months. I am so proud. We are still working on Jimmy. He'll get there.

Surviving Christmas

Well, it has come and now gone. They boys had a fabulous time. My house is destroyed. I'll try to bring order from chaos today. My neice Christine arrived at about 2:30 this morning on a much delayed flight from Dallas. I have been looking forward to hanging out with her. The kid is a lot of fun.

Jimmy's been very chatty. He is a little more hyper of late, so, as discussed with our developmental pediatrican, we are upping the Tenex dose to two a day. We still have a problem getting a full dose down him. When we saw are regular pediatrican, he suggested (without being pushy or wanted to step on the other MD's toes) enquiring about Risperdal. I have heard that name used a great deal, so I will read up, see how the Tenex increase works out over the next several weeks, and maybe give the dev. ped. a call.

Jake is Jake. I didn't realize what two was like. We had never had it with Jimmy.

It Finally Happened

I am sitting there, wrapping presents. The paper starts to tear at a weird angle as I am cutting it. It's like my tenth, so I am pretty peeved. In frustration, I say "oh shit." Then I hear this little echo - "Oooh sheet." It's Jacob. This is why I really try not to swear in front my children. In this case, I didn't even know he was in the room. I have been waiting for that to happen for four years. Finally did.

Unholy

Check this out... that picture is just scary!

Off Work Until 2006

I get a week and a half off. The university closes today until January 3rd. I love this break. I will spend a week at home with the boys. Between that and the projects I have to do at home, I should stay busy. The boys alone should have me raring to come back to work in a week. I will do my best to post over the break.

Happy Holidays...

The Matthew's Center

The Matthew's Center is the organization that provides in-home services (or in his case, daycare) for Jimmy. They are doing a gift-wrapping fundraiser at the Barnes and Nobles in Manassas today, tomorrow and Friday until 8pm. I hope some of you who read this and are local will stop by to make this event a success. If you are also trying to make some end of the year cash donations in advance of tax time, they accept those too. I mention all this because Jimmy and our family were very recently the beneficiaries of a generous act of their director, Laurie Heilman. They have done wonderful work with Jimmy and I wish that I could afford to have them do more. So I put it out there for anyone who has the spirit move them.

Thank you Laurie, Shivi and most especially Dana for all you do. You each have a very special place in my heart. Have a very Merry Christmas and a Happy New Year.

Go Gwen

As a big No Doubt and Gwen fan, this is good news.

Feeling Battered

So I went to the school board meeting last night, to beg for an autism 5-8 class, to tell them to do a better job the next time they made a school closing decision - I wasn't nearly as articulate as I could have hoped for. I believe in the people that work with my child, but I think the system will ultimately fail him if I don't push for change. The local high school boast state championship in football, softball, and wrestling. These are all great things, but mean nothing if the system has farm children from this community out to Prince William County to be educated because district can't invest time, energy, and resources to education children with special needs such as autism. I'll keep trying but I feel, on the whole, the powers that be are unresponsive.

Chatty Boy

A decent weekend. Jim's office party Friday night. Had lunch with friends on Saturday. Sunday didn't do a whole lot. Actually watched two movies - The 40 Year Old Virgin and Fantastic Four. I never watch movies. The boys played pretty well, but Jimmy was very chatty. He was playing with a kangaroo beanie baby and was saying "kangaroo jumping." I am so used to him labeling, it's weird to hear him use a verb. We had him repeating new words, which is also something that I am not used to him doing. My only concern is he is getting more hyper, but we are supposed to up the Tenex over the break, so hopefully that will help.

Christmas is Leaving Me Feeling a Little Tapped Out

I didn't make it to work until 12 noon. The roads were a mess. Jim was following behind me so we stopped at Toys R Us to buy for the Rist children. We are complete suckers - we left with their gifts and another $111 in VSmart games and a system. Such fools!!!

Ice, Ice Baby

So I am sitting here waiting for Jimmy's bus. He had an hour delay, but the bus is actually later than that now. Not there fault. Apparently, there was an accident on 28 in Fairfax County, backing traffic up on 28 into Prince William County for about ten miles. I knew there were serious problems when it took me 20 minutes to turn out of my neighborhood. After I got my Starbucks, I just went home - no point in just sitting there.

I know there is debate in Northern Virginia if we are truly the South (my take - we are below the Mason-Dixon line and were a slave state, we're Southern), but I am confident in saying this is the real reason that the South shall never rise again. We can't drive in the weather.

Way Behind, but Catching Up

Still hanging in... had to take a little mental break after finals. I am starting to recognize friends and respond to my own name again, so I am doing better. So here is the update....

Went to Depeche Mode on Friday with younger sister, her eldest, and former neighbor/bff/bitchy soulmate at the Patriot Center. Much love for Depeche Mode. I have special love for Dave Gahan and (sigh) Martin Gore. Fantastic show. And so many gay men. A long time hag, I was in HEAVEN!!! BFF screamed herself hoarse - I would have done the same, except I was in better health. Eldest girl child was impressed - all of her Hot Topic angst band experience did not prepare her for a real stage show. The keyboards were kept behind silver constructions that looked vaguely like flying saucers. Very cool. The show was great, the company was great - lots of fun.

Jake is doing well. He's being two. Likes the word no entirely too much for my taste. Jimmy's great. Very chatty these days. Just an explosion of language - not functional like a four year, but I am starting to think that his brother modeling language and what he can get with it is giving Jimmy a big push.

More later... Still decompressing from finals...

The Real Story about the Airline Shooting in Miami

This sounds a great deal more like the truth than what is being reported in the American press. As the mother of an autistic child with little receptive language at this point (as well as personally having struggled with depression), when I heard about the Miami shooting, a chill went up my spine. I don't know what the future hold for my son, but you know, if an air marshal told my son to put his hands up, he would do so for 30 seconds before shouting "down," giggling, and insisting that everyone do the same around him. I am not sure I would trust federal air marshals to distinguish between a terrorist and someone with a cognitive or psychological disability.

I have the sneaking suspicion that a man was killed in cold blood for having a panic attack and being unable to control himself. We have been so cowed by fear that we will allow Homeland Security a senseless killing much like the Brazilian in London this summer.

I Made the SIS Newsletter...

...with my friend and colleague Susan Jennings!!!! For presenting at VLA! Go us!!!!

Best GIF Ever

Go to the link... just do it.

We now return you to your regularly scheduled finals week....

Jimmy Update

Jimmy had the double whammy - an ear infection and a virus. He is on antibiotics for the infection. His fever has been down for 24 hours, so he can go back to Kindercare today. I have to take him to see the developmental pediatrician this morning. I am mess, though - I had some forms that I was suppose to bring to him and I completely forgot. I hope he isn't too mad... I don't want to waste his time and I certainly don't want him to think I am a flake. We have just had so much going on.

I am cranking through finals... two of my three classes are essentially done. I just have this portfolio that I am working on that is just sort of all consuming. It's coming along, but there are just so many elements to it. I have planned it out all pretty well, meticulously enough to allot for sick children. The only problem is that now, no one else can get sick. It just has to get done. I am a wee bit stressed. It's due 5pm, December 9th. I have to have it done the day before because my sister and niece are coming to see Depeche Mode with me. My friend Tori is coming as well - I am really looking forward to it.

Back to work. I might post again later today about the doctor's appointment.

I am beginning not to like the school nurse...

She called Jim at home. Apparently he is pulling at his ears and running a fever. We will be off to the doctor this afternoon. She won't let him come back to school tomorrow. I do hope to take him to Kindercare tomorrow so he can have his therapy session with Dana and Shivi. But I am off for the rest of the day. I hope he will at least rest so I can read for finals.

Today's testimony

I did a little write up for tonight so I have something to work from. I doubt it is typo free, but right now I am more concerned in getting my presentation together and making my management final typo free to worry too much... Why does everything happen at once?

My name is Rachel Kirkland. I am a constituent from here in Manassas Park, Virginia and a state employee at George Mason University in Fairfax. This young man with me is Jimmy Kirkland. My son is four years old and was diagnosed with PDD-NOS, a disorder on the autism spectrum, in April 2005, after several years of concerns being expressed to our health providers at Kaiser Permanente. At the time Jimmy was diagnosed by the neurologist from Children’s Hospital in April, she recommended a treatment plan of occupational therapy as well as intensive speech therapy. Our pediatrician concurred with her recommendation and put forward referrals for approval by Kaiser. Kaiser approved a mere twelve sessions of speech therapy and denied the occupational therapy entirely. When I looked into appealing the decision on the occupational therapy, I found that I would likely have little success. The contract that the Commonwealth of Virginia has for state employees provides for occupational therapy in cases of rehabilitation only – when a patient has had skills previously and lost them due to illness or injury. OT, in this case, is considered habilitative in that it would assist Jimmy in acquiring skills he does not already have. As a result Kaiser will not cover it, regardless of the recommendations of the neurologist who diagnosed him with autism or their own physician, who concurred with the findings of the neurologist.

Not wishing to seem ungrateful for what is covered, twelve sessions of speech therapy at a half an hour a session for a four year old that is just starting to develop language is woefully inadequate. In reality, even though the referral has been approved, Kaiser deals with only one speech center in Northern Virginia, an hour away from our home in Manassas Park. We have been on their waiting list for several months now just to get a slot on their schedule. Some at Kaiser have suggested to me that helping Jimmy is role of the school system, that systems like ChildFind exist to provide help to these children. Jimmy has been attending Cougar Elementary School’s Early Childhood Special Education preschool class since January 2004, when he started the program at age 2½. While I look at these teachers with awe at what they have been able to accomplish with my son, the reality is that children like Jimmy need one-on-one care and therapy to gain the skills they need to function in the world, to overcome this medical diagnosis on the autism spectrum. No one would ask a teacher to set a broken leg, perform brain surgery, or teach someone with a spinal injury how to walk. Leaving these medical and therapeutic functions to educators is wildly inappropriate. Special education should supplement medical and therapeutic care for children like my son, not serve as a replacement for it.

We have contracted with the Matthew Center in Manassas for additional therapy for our child. We pay for 2-4 hours a week of intensive in-home services, receiving a 30% discount. The therapist delivers speech and social therapy to Jimmy at his daycare center. After an assessment of his level of function and his progress, she recommended ten hours a week of therapy for my son. Financially, I am stretching to pay the two to four hours a week I have her deliver, running up credit card debt to free up the cash to provide the most basic therapeutic care my son needs. Doing intensive therapies that Jimmy could really benefit from like ABA (Applied Behavior Analysis) is out of the questions because of the lack of funds and insurance coverage. When you are looking at your life and realize that you child has needs that you are unable to meet, it is heartbreaking. It is an enormous stress on parents, families, and the larger community. I believe and love this child more than anything in the world and his future is big question mark because I can’t get the care he needs now. Since his is a medical diagnosis, these services should be covered in the same manner as his visits to his regular doctor or specialist. There shouldn’t be a distinction in habilitative versus rehabilitative therapy – therapy recommended by a doctor should be provided and covered, period.

Stronger laws are needed to force insurers to provide needed care for children with the medical diagnoses that fall under the umbrella of the autism spectrum disorders. I would like to see a bill like Ken Plum’s bill from last year, forcing insurers to cover habilitative services such as OT, Speech Therapy, and ABA for all children with a diagnosis on the autism spectrum. It should be part of any insurance coverage, not an additional rider to be paid for by Virginia families. No one would dream of asking for this from someone whose policy included someone with chronic condition like asthma. Last year’s SB1049 asked for coverage be provided in these areas until the age of five. My son’s needs aren’t going to go away at age five. Kaiser refused to write a referral to have his developmental delays assessed by a specialist until the age of the three. It was a four month wait for an appointment, who deferred diagnosis for another six months. It took me eight months to get into see a developmental pediatrician. Hopefully, you are beginning to see the problem with setting a limit to coverage for under the age of five – nothing in the world of autism happens quickly, ever.

Habilitative care and therapy for all children with autism should be provide and covered by insurers in Virginia. It is a benefit not only to children like my son and families like mine, but to all taxpayers in Virginia. By making the investment now in these children, allowing them to receive the medical care and therapies they need, can they achieve the basic functioning that the rest of us are fortunate enough to take for granted. Through this investment, children like my son can go on to become taxpaying citizens rather than draining resources through disability payments. I think the General Assembly and the Governor need to establish a task force to look at all aspects and considerations of autism – financial, social, educational, and medical. Autism has no know cause or cure and a growing number of children being diagnosed. Simply put, everyone needs to more to ensure these children have the best possible future.

Thank you.

Special Education in the Supreme Court

A fairly thorough write up on the recent case on IDEA in the Supreme Court. I am not sure how I feel about the ruling just because I am not as familiar with the ins and outs of applying the law. Maybe I will give it some thoughts after finals. Thanks Tori for sending it to me - she's a great friend!

Why Me?

Last Wednesday, I got an e-mail about a townhall meeting with six members of General Assembly on Monday. A great opportunity to educate them about autism and try to get some beneficial legislation introduced. Problem - it is on the same night as my class presentation. I have an e-mail into my professor to see if can go at 6:30, so I can run over with Jimmy to City Hall (a friend put me first on the schedule there) and still have enough time to come home and finish my class. I am waiting to hear back from my professor. I am just praying!!!

Happy Thanksgiving

We made the rounds today - dinner with my in-laws and then to my mom's in-laws. The boys conked out early. Jim is taking a nap before running out to CompUSA which starts Black Friday at midnight. He is getting some sort of USB hard drive thing. I decided to punt on the early bird sales this year. There just wasn't anything that cool. After I drop the boys off at daycare tomorrow, I am going to come back and clean up and do some laundry before I wander on to work.

Jimmy sang a lot today. He knows the theme song to "Bear and the Big Blue House." I am impressed!! Jake is calling the show "Bear Big House." At least I know what he is talking about. I swear, we watched that Thanksgiving tape four times in the last day or so.

Friday's Dinner Out

We went to Bennigan's at Fair Oaks. Took Jim's cousin Susan, who came up from St. Mary's College to ride up to New York with Jim to visit their ailing grandfather. Jimmy was pretty well behaved throughout and ate well to boot. Skinny, crazy legs Jimmy always needs the food. Jacob - well, that's a different story. He was a lunatic the whole time. Throwing food everywhere, screaming, throwing fits. He even managed to nail a female passerby on the way to the bathroom in the head with a crayon. I am not joking. I wanted to crawl under the table. His behavior was insane. We won't be going out with him again soon.

Jimmy's only quasi-meltdown of the evening occurred as we tried to leave KB Toys. He wanted to stay and watch the battery driven yappy dog. Kept putting his feet down so I couldn't push the stroller forward. I tried to walk him, but he went limp repeatedly. Susan, who is barely 5 feet tall and less than 100 pounds carried him back to the car. Strong kid. I was impressed.

Pope Joe

This is truly the best blog ever - and I am not even Catholic.

Catching Up

I am sorry I have been so remiss in my posting. My semester is winding down and I am slammed with work. I apologize. A lot has been going on... I will start with Jimmy's IEP meeting today (last Thursday), move to dinner out on Friday, and the weekend over the next three posts.

The IEP meeting took 2 and 1/2 hours. It was not only the annual IEP meeting, but an eligibility meeting for Occupational Therapy and Physical Therapy for the schools. We didn't get PT, but we got 30 minutes of direct therapy for OT as well as the 60 minutes direct (30 individual/30 group) speech therapy we get already. We set his goals to the end of the year, when we will meet again to decide about kindergarten promotion. I was pretty clear that I did not want him referred out of the school district for his schooling, that given the increasing number of children receiving ASD diagnoses that every school district should have an appropriate program for children in that community. I will continue to advocate for that and see what happens.

The turn out for the meeting was huge. In addition to the regular cast of characters of teachers and therapist, the head of special programs, the principal, and the vice principal were all in attendance. In addition, Jimmy's therapists from the Matthew Center were both there as well as (to my incredible shock) his teacher and one of the managers from Kindercare. That blew me away. Now everyone will be working together on the goals in his IEP across environments. That's huge.

So that was the IEP meeting... more tomorrow on the rest.

Terror Scare at UT

Breaking News:

Tennessee Volunteers football practice was delayed nearly two hours today after a player reported finding an unknown white powdery substance on the practice field. Head Coach Phil Fulmer immediately suspended practice while police and federal investigators were called
to investigate. After a complete analysis, FBI forensic experts determined that the white substance unknown to the players was the goal line.

Practice was resumed after special agents decided the team was unlikely to encounter the substance again.

Thanks to Susan for sending this along... Go Crimson Tide, right?

Meeting my Sister

Okay, the women in the second photo are my sisters Tracy (pants) and Becky (dress.) Notice the Leeza icon in the corner. Becky wrote the Leeza show, asking to meet our sister Tracy. The show flew me out to surprise both of them. It was several years ago and there really isn't much more to the story. But there it is...

A Fairly Big Week

I have an assignment due tomorrow and I have to give a booktalk on The 7 Habits of Highly Effective Poeple on Wednesday, and an IEP and Occupational Therapy eligibility meeting on Thursday. Friday I have time on my practicum, then I race home to clean for my mother-in-law, who is coming on Saturday. Jim and Jimmy are going to New York to see his ailing grandfather with his dad, leaving me with Jake and his mom. At least she can watch him Saturday when I go meet Dr. Cortez for lunch with my DE group. I think I am going to be going on breakneck speed until December 8th, which is the day my portfolio is due. I have so much to do over the next several weeks. Ugh...

All News is Local

There was an election last Tuesday. You might have heard about it. We got a new governor out of the deal. If you look at local news coverage, the majority of my neighbors were blithely unaware or just didn't care. See the link to the story above.

To make matters worse, there is a Reader's Reaction section that I, for the life of me, even though I am registered on the Journal-Messenger site, cannot figure out how to access. Since I can't do that, I feel the overwhelming need to correct these people here.

Posted on 11/11 at 06:12 PM
That is why I want to see voter turnout by precinct. Manassas Park has two precincts, divided by RTE 28. Precinct 1 is east of 28 and Precinct 2 is west of 28. Interestingly, Precinct 2 is slightly more Democratic-leaning than Precinct 1, by a few percentage points.


That is actually incorrect. I talked to Patricia Brendel about this at one point. There was also a document that addressed the new polling places. The divide in Manassas Drive... I live in Brandy Station, I vote at Costello Park in Ward/Precinct One. I used to have a sitter over by Cougar. She too has to haul all the way across town to vote at Costello. If you live north of Manassas Drive, you go to Ward/Precinct Two, which I believe is the middle or high school. It's not which side of 28 or the train tracks you live on to vote (as it is with everything else in the Park), it's which side of Manassas Drive.

Posted on 11/11 at 02:24 PM
I'd like to see the Manassas Park voter turnout broken down by precinct.


There you go
http://sbe.virginiainteractive.org/nov2005/detail683.htm#03


Posted on 11/11 at 10:23 AM
Manassas Park probably has more illegal immigrants that any other city/county in Virginia. I believe that had more to do with the low voter numbers than any other factor.

This one is signed by someone named surprised?. I would be surprised too if illegal immigration had much to do with low voter turnout as in theory illegal immigrants do not have the right to vote. The are routinely purged from voting roles as are convicted felons who register unknowingly or erroneously. Voting is a right and responsibility of citizenship. Most immigrants I know are too busy making a living to know or care who is in office. Quit beating the immigration drum for every social ill. If you really want to do something, go to Frank Jones and the Governing Board and ask what they are going to do about the "problem" in the community in the ways that matter - overcrowding in homes and schools, gangs, etc...

Posted on 11/11 at 10:23 AM
Why should the voters in Manassas Park care about the state elections? With our small population we always end up sharing representation with Manassas, and although Parrish is a good man, he has always taken his mandate from them. Not one time has he supported a position that helped Manassas Park over Manassas and he probably won't this time around. If all of Manassas Park's registered voters voted against the candidate preferred by Manassas, we would still lose. So why bother?

This is the only post that makes sense. Apathy, however, is still no excuse not to vote.

Posted on 11/11 at 10:23 AM
More than likely the reason behind the low votes in Manassas Park is probably because a majority of the residents are non-citizens. The other reason could be that people just did not register to vote. Like they say, every vote counts though!

The flaw in your logic is the that voter turn-out is calculated in relation to registered voters, not population. Again, the only way illegal immigration would affect this statistic is if illegal immigrants registered erroneously. It isn't to say that it doesn't happen, but more likely it was a bunch of citizens who registered to vote and just didn't care enough to.

I can't believe the Manassas Journal-Messenger doesn't care enough about the content of their comment boards to go through and correct misleading and erroneous information themselves. Depressing.

I'll Take Your Extension

Dr. Lee, my management professor, gave the class a collective extension on the Personal Case Frames paper due to fall comps. I now have until midnight Friday. I will still try to get this done today, but now I can actually take a lunch break and not worry about making a deadline of today. Actually, it makes the flow chart more pressing... creating a flow chart. Ugh.

Jimmy and Jake seem to be recovering from their shots well. I, however, still have a sore arm.

An Afternoon at the Doctor's Office

I took the boys to the doctor's office. Jake was due for his two year checkup and Jimmy was overdue for his shots from his four year appointment (he had been running a fever that day.) All three of us needed flu shots. I nearly teared up when, as I was answering all of the doctor's developmental questions, I realized how many of these I couldn't answer about Jimmy when his appointment. Actually, they never even asked at Jimmy's two year appointment. He screamed through that whole appointment and the NP ran from the room.

That was then... back to Jacob. Today, for the first time, I allowed myself a sense of relief that Jake really is going to be okay. Although Jimmy didn't development in this way, I had heard so much about regression before the second birthday for children who are later diagnosed with autism. Even though he has developed completely normally, I have never taken it for granted that could somehow change.

The pediatrician was very pleased with Jimmy's progress. His articulation today was perfect. He used a few words, played the up/down game with me, and made great eye contact. I was so proud of him. I told him about my trip to Richmond and my plans to visit the school board again in December. The doctor encouraged me to continue to lobby for better insurance coverage for children with autism - he expressed some frustration that his hands are tied by, in this case, the HMO company.

To put a nice cap on the whole afternoon, both boys barely cried for the shots. Neither liked getting them, but they didn't engage in the drama I remember pulling on my mother post shots. Literally, a split second of crying from each. I love my little men.

New Posts This Week

Sorry about the lag everyone... I had an incredibly busy week last week, made worse by the allergies from Hell. More posts and pictures this week. I promise.

Happy Halloween

We forgot the camera when we went with Jimmy's class to the pumpkin patch at Cox Farms today. Big day - I made myself sick on kettle corn, Jake went to bed at 8 (exhausted from Trick or Treating), Dad is eating the candy from the trip, and Jimmy is playing with his train. Jake's birthday and Halloween are over. No begins the downward slide to Christmas...

Congrats to Mrs. Debby, Jimmy's teacher finishing the Marine Corps Marathon. 8 hours, somewhere around 18,000 of over 30,000 people to start the race. I am impressed!!!

Jimmy at Build A Bear

The only negative of our weekend Build A Bear trip was Jimmy's reaction to it. He was completely overwhelmed by it. Before the tubes worked, the adenoids were removed and Jimmy could hear well, you could pretty much take him anywhere and he would not be phased by it. Saturday he was completely overwhelmed by the noise and busyness of it all. He gathered this little dogs, ran off to a corner (followed by dad) and hung out with them. He wanted no part of the experience. I felt bad that we chose something that he was effectively left out of, but what can you do?

Another View

Slightly larger...

This Is Me

With Baby James Pearce

Build A Bear Photos

From the top...

Jake, Ethan, and Jimmy with Grandma Liz
Paul, Maddy, Joise, and Joise's Mom
Elmo communing with Jake

Jacob is 2 Today

Greetings from the Build A Bear party!!! More later...

George Comes Out

To me, this is joyful news. In a past life, I worked for a company that put on Star Trek conventions across the country. I had the pleasure of touring the country with the Fab Four of the original series, the late Jimmy Doohan, Nichelle Nichols, Walter Koenig, and of course George Takei. Between sitting in airport lounges and dinner out in places like Eugene, OR, Boise, ID, or Valley Forge, PA, we had the opportunity to talk at length with the actors, especially George and Nichelle. I have even had the pleasure of meeting Brad, his manager and partner. They are a lovely couple.

I met a lot of actors during that period. Without casting aspersions on any of the rest, I found George to be the most grounded, intelligent, warm, and humble of the lot. George being gay was something we always knew but never talked about. To us, it was the smallest element of who he was and is to us. At the same time, the few times I did see him with his partner, he seemed to be the one person who was the picture of a stable relationship. That stuck with me. I have long hoped that he would be able to come out and be able to share in some small way what I was fortunate enough to see in him with the world. I am overjoyed for both him and Brad and hope they continue to be happy.

Things I Hate

Things I Hate...

#1 When Jimmy cries - when he gets upset, even over little stuff, he gets so worked up. He can be hard to comfort. He spills a little bit of water on the floor and he goes ballistic. Other things will happen that would upset me, like a glass breaking (he's done that before) - doesn't phase him. It's almost like he gets frustrated with the things he feels like he should be able to do - drink from a cup without spilling, communicate, etc... It odd and always leaves me feeling helpless.

#2 Kidney infections - I got violently ill yesterday afternoon. I assumed it was the stomach bug the boys had over the weekend. Then I got chills and a fever - then my back hurt and I had to pee a lot. Wholly unpleasant. I am antibiotics for a week.

#3 Rain - We went from having none for weeks on end to needing to gather two of everything. Crazy.

A Post VLA Update

I can't describe the last few days in a single word adequately. I got behind on my blogging because I had a presentation at VLA last week in Williamsburg. I am sorry for the break.

I drove down to Williamsburg about noon Thursday. Of course, before I left the school called to have Jimmy picked up. He has had another ear infection and is taking a lot of medication. It is interacting with the Tenex and as a result he has been asleep when he gets of the school bus. Thursday, he refused to wake up. I arranged for the daycare to take him and let him sleep, since he wasn't running a fever. I fled to Williamsburg, hoping that nothing dramatic would happen with the boys while I was gone.

I got there about 3pm. Ran into my old AUL (the boss' boss) who is the outgoing president of the Virginia Library Association. She was talking to another woman, a UT grad and now with the Library of Virginia. She introduced myself and recognized my name right away because of the VLA and UT scholarships. She was the first person to say when I started looking for a job, to give her a call. I got a lot of that - people recognized me because of the scholarship and then made casual offers of employment or help finding employment or said they expected great things from me. Pretty odd.

After getting settled in my room, I went back down to the lobby. When I looked over at the concierge desk, I recognized the man standing there as our new program director at UT, Dr. Cortez. I introduced myself and he invited me to the bar for a drink. We talked about the program and the profession. It was a great conversation - for those who read this who are in my program, he is a really nice guy. The program will flourish under him, I am confident of that.

After drinks with Dr. Cortez, I ran off the banquet where I was given some award for having gotten a scholarship and working on their fund raising campaign for the VLA Foundation. Susan arrived, I had another glass of wine while she ate, and then gutted our presentation before going to bed. I am guessing I had about five glasses of wine and I was pretty hung over the next morning...

Friday is just sort of a blur... Got up, met more people, gave the presentation - it went really well. Dr. Cortez even came!!! The evaluations were pretty good - the only negative one was they had hoped the program would provide more a comparison between schools. Since we never said that it would, we discounted the one negative and feel like we did pretty well. I wound up stay a little later so they could present the big scholarship check at the closing session, so I went to check my e-mail.

That's where this story goes horribly wrong. There was a work e-mail titled "Sad News." I figured someone's parents died or something. Nope. My friend and colleague M "passed away" Thursday night. Passed away? He's my age - how do you just pass away? I find my colleagues at the conference to tell them before they too have to find out via e-mail. He was sort of universally liked... he sat next to me for six months when he was a wages librarian, so we chatted a bit. I really liked him - he reminded me a bit of Jim Carrey from the Truman Show... sort of odd, but really likable. It was all I could do to keep from totally bawling right before the check presentation. It wasn't until I got in my car that I really started to cry.

It wasn't until later, as I was driving home, that I was able to get ahold of someone who told me what happened - he had taken his own life. I think I actually screamed when she told me. I wish to God she had told me anything else. I really do. I sobbed off and on all the way home. I broke down crying on the way to work this morning. It hit and is still hitting me really hard. I had no idea. I wish I did - I wish I could have said or done something. I have been suicidal before, even made a poor attempt at it, but I am so grateful looking back that I failed. Life got better. It's not perfect, but I have so much know - my kids, an education, good friends (like you) - things I would have missed had I died. I wish I could have hugged him and told him that it would get better. But I didn't know.

Anyway, this day isn't starting off really well. I sitting in my cube, looking at Julie's cube - it's where M used to sit. I hate that I will never see him again, that we'll never talk. I am very sad to lose a colleague and a friend, especially since he didn't have to die. I'm not angry at him - I understand he must have been in pain, but it is just so sad. It breaks my heart.

A Drug Induced Stupor

So the school nurse called... apparently from the Tenex, Triaminic, and the antibiotic, Jimmy is in such a state the is sleeping through school today. He slept through school and is sacked out at Kindercare. I am concerned, but there isn't a lot I can do. I have no more sick leave and Jim has very little. He isn't running a fever, so they are willing to keep him and let him sleep. I, however, feel like the world's worst mother.

Home Early

Jimmy has yet another ear infection, so I am home early from work to take care of him. I always feel badly when he is sick. He just gets so quiet and withdrawn. All kids are that way, but with Jimmy, he make so little noise when he is sick that you barely notice him in the house. He is moving around a bit, but it's just not the same as when he is feeling well. He talks more, he squeals, and he runs all over the house!

My graduation forms came in the mail today. I can't believe this is almost all over. I will have a Master's degree come May. I am sorry, but that is just so exciting!!!!

Photos from the Battlefield in Manassas

I tried to upload multiple photos from yesterday - it didn't work, so you get them on at a time. Jake crawled on this wall about a dozen times. Just hiked up the side and walked along until he wanted to fly off (with my help, of course.) Child has no fear - there are many emergency room trip in this kid's future.

Annoy Me Some More

No, this is not the guitarist from ZZ Top.

Had a great day with the cousins. Will likely see them tomorrow. Didn't get to see Nick though - that will be tomorrow. I forgot that today was Nick and Joshua's birthday. Not twins, not scheduled, they just happened to be born on the same day six years apart - Nick's 24 and Josh is 30. Wow, I remember them both as babies. Where has the time gone...

What annoys me right now are issues regard his "label" - his diagnosis has been alternately and informally PDD-NOS, Autism Spectrum Disorder, and Autism. To me it's like skin cancer, lung cancer, leukemia, Hodgkins - cancer is cancer. Maybe there are degrees to it, but it is what it is. I am tired of the focus on words or fault (ears, genetics, etc...) - it's not about where we have been, it is about where Jimmy is going.

A Nice Diversion

My cousins are in town from Ventura, California. She is my dad's first cousin. I haven't seen Marcia and her husband Ken since my dad's wedding in 2002 - at it had been years before that since my prior visit. I spent a great deal of time with them growing up, though. Their son Nicholas is here doing training for Americorps. He will be deployed to the Gulf Region to help with disaster relief. Pretty noble and likely a great way to pay off student loans. He turns 24 tomorrow. He was less than half that age when I saw him last. Should be entertaining.

Last Night's Town Hall

The local representatives are doing three town hall meetings in the area, a brilliant idea right before an election. So I loaded the boys up and took them over to the high school to speak to State Senator Colgan and Delegate Parrish about autism and how the state might consider examining how to better serve the educational and medical needs of children on the spectrum. I was supposed to be first to speak, but since Jim was about five minutes away, I deferred until his arrival. Jake was being too much of a terror to actually say anything until I had help.

When the husband arrived, he took Jake and walked him around the school. I sat and watched Jimmy nap peacefully while I listened to an 86 year old man speak about global warming. Kind of down home, but very wise. He was a sweet old Southern gentleman. After he was done, I was invited back up to the microphone. I spoke about Jimmy, my experience with Kaiser, going to Richmond in August (see August's posts) to speak in front of a state committee about autism and insurance issues, my experience with the education system. All of it. Exhibit A slept all the way through my speechifying. But it felt good. Both gentleman seem interested, took notes, and inquired as to who authored the previous bills.

I told them I thought the state should engage in a thorough discussion of autism and the medical and educational issues around it. That there should be a single educational standard to children with autism. I should have live with the fact that if I lived three miles down 28 in Fairfax County, Jimmy would have 30+ hours a week in school and receive ABA. Currently, living in Manassas Park, he gets 17.5 and very new and limited ABA services. I shouldn't get recommendations for care from my doctor that my insurance company has no intention of providing. Either way money will be spent by the state on kids like Jimmy - either as children, giving them the medical care and education they need to becoming functioning, taxpaying citizen or on the back end, supporting them through adulthood. The choice seems natural to me.

In the end, my comments seemed pretty well received. Someone approached me with some recommendations for trying to get additional government help and I spent some time today following up on that. I'll let you know how it goes.

Thought for the Day

In reality, dreams die hard. Leave them where they thrive - in the back of your mind, only to appear when your eyes are closed and you're tucked in the warm embrace of your pillows and blankets.

Katie's Dad is Ticked

You know, I should be more compassionate. After all, Katie Holmes is a person, someone's daughter, carrying someone's grandchild. But I HATE Tom Cruise! No one, especially some smarmy Hollywood actor should be telling women how to treat themselves (anti-depressants) or their children (Adderall.) Since I officially have experience with both depression and ADHD (to the extent that it is part of Jimmy's whole makeup), it offends me that this man sits in judgment on women who are busy with the work of caring for their families the best way they can. Women like me. I hope Katie never knows the misery that comes with real life. And if she does, I seriously hope she goes apeshit on his ass.

Somebody Reads My Blog

Left a comment and everything. I sent an e-mail! Yay! I am so excited!!!!

No Catchy Title Today

I am feeling uninspired. Worse yet, not a lot is happening. I didn't have class on Monday and both of my other professors cancelled their classes. I wound up with an unscheduled week off. I was going to go to aqua aerobics tonight, but apparently those plans are in flux now with the last minute arrival of family from California. Might see them tonight, might see them later this week. I just don't know yet.

The medication seems to be bugging Jimmy a little. I talked to the doctor last week and he said cut it back to a single dose if you have to, so we're doing it. He scratched himself bloody in a few spots. I felt so bad. He will likely still derive some therapeutic benefit. The school is reporting more language and the therapist is reporting better attention. It would be perfect if he didn't itch...

Jake is Jake. They fought over chocolate milk last night. He was still crabby when I took him to Kindercare this morning. He is staying up later - he seems to really dislike having to go to bed so much earlier than his brother. But he is such a mess if he hasn't slept enough.

Wow... that's it. Life needs to get interesting soon.

A "Supernanny" on Autism

I have never actually watched this show, but I imagine I will be tuning in for this episode. I hope some of you will as well.

SUPERNANNY TEAMS WITH AN ACCLAIMED AUTISM EXPERT TO HELP A CHILD WHO IS AN OUTSIDER IN HIS OWN HOME ON "SUPERNANNY," NOVEMBER 4

"Facente Family" -- Supernanny Jo Frost teams with world-renowned autism expert Dr. Lynn Koegel to tackle the parenting issues faced by a family whose three-year-old son is an outsider in his own home. This episode of"Supernanny" airs on FRIDAY, NOVEMBER 4 (8:00-9:00 p.m. ET) on the ABC Television Network.

After there done there, I wonder if the Supernanny and Dr. Koegel can come to my house.

Sunday Night in the JCL

I am at work tonight. Most or all of my students are out of town for the fall break (how can they call a three day weekend a fall break - I'm sorry, it would have to be like four days in my book...) so I came in to work from 9pm to midnight. I took a nap, but I am still starting to wind down. And I haven't finished my venti skim no whip mocha!!! But I did get two of my three econ questions done. I have to go to Fenwick for the other, so I think I am doing pretty well.

The boys are doing okay. I left them home with Jim and he is having a miserable time with them. Jake's still awake (he called and said Mommy on the phone) and Jimmy flipped out once. I feel kind of guilty, yet there is this kind of perverse pleasure knowing my boys miss me when I am gone. The Tenex is going pretty well for Jimmy. Just a slight rash. I called the doctor and he phoned back the same day... keep the dose the same, watch it for a week, see how it goes. At least he didn't say to pull him off. I want to give this a chance so we can see what if any effect this has with him.

Back to the studies... I have to go break out my management text.

Slow News Week and More Sesame Place Photos

Slow news week here, so I thought I would add some photos I never posted of the Sesame Place trip. Jimmy - most of his good photos were taken with the waterproof disposable camera, which has yet to be developed. As you can tell by the one photo of him alone, most of what I got on land were action photos. Pretty standard - take him out of the stroller and you wind up looking at his backside as he runs off.

I was looking at the photos with Jacob earlier. He saw the ones with my mom and called her "Gammy." Jimmy calls her Memaw and Jake calls her Gammy. I'm sorry - I think it's cute!

"Karma is Alive and Well"

Ever wonder what happened to Joey Buttafucco? Here you go... Some how I think Mary Jo and Amy are both better off without him!

Python vs. Gator

This is a great story. I despise snakes. I am completely, utterly terrified of them, so I took a perverse joy in the outcome of this epic battle of python and gator. Did the snake win or the gator or was it a draw?

Katie Holmes Expecting

ICK!!!!

Coming Unglued...

I have an assignment due tonight in my management class and I haven't even started it. I have been so moody and stressed, I have absolutely no focus. It's an incredibly bad place to be when you have three classes, a full time job, and the whole mom thing. It's not like the classes are too much. I just can't think... I keep tearing up. It's just awful.

An Unending Source of Stress

You know it's a bad day when you walk into your boss' office crying and you can't articulate what's wrong. School is stressful, marriage is stressful, kids are stressful, autism is stressful. My job, mercifully, is rarely stressful, until today. It's like the perfectly balanced house of cards tumbled down around me. If I had a sick day left for tomorrow, I would take it. I really would. At this moment, I just want to crawl into bed, pull up the cover, and have the world go away. I'm just frustrated and sad.

A Jimmy Update

His therapist just called - she is doing a makeup session with him today. He used his "I want" phrases without prompting, greeted her with a "Hello" and said loudly "My turn" when they were practicing turning taking during play. She said he was very attentive today. Maybe the medication is helping.

Another Week

It's Monday and I already feel like I am behind. I got my stuff done for my programming class tonight. I have my business assignment due tomorrow and I have the leg work done but not the write up. To make that worse, I got my anthro assignment grade and it was (he ballparks these things) A-/B+. A B+??? Time to work a little harder.

We started Jimmy on his morning dose of Tenex this weekend. He did pretty well Saturday and Sunday, but this morning, he only finished half the apple juice. I guess I am putting it in milk tomorrow. Hopefully he'll finish it then. We also put him in a booster seat in the car - he did very well with it. He did struggle against it the way he would against the chest restraint on the regular car seat. I'm pretty pleased!

A Sunday Moment

Jimmy had just drifted off to sleep on the couch. He looked so sweet and peaceful... until Jake came with his glass of water and poured it on his head. One angel, one devil. How did that happen?

Valium Inventor Dies

Now here's a man that made a lasting contribution towards society...

A New Toy Box

I went to the Child Study for Jimmy yesterday afternoon. They are evaluating him for (and likely recommending) Occupational Therapy and Physical Therapy (in addition to the Speech Therapy that he is currently receiving) for inclusion in his IEP. The timing was perfect, since the next IEP meeting is scheduled for December. I very much like the principals at the school, even though I still don't think much of the actual physical move to the elementary school. These people are trying - I only wish I had the money to do more. Kaiser, as we all know, does nothing.

After the meeting, I ran a few errands. I stopped at Toys R Us, where I bought Grandma Liz's early birthday present for Jake: a new toy box. I can now pick up all the toys off the living room floor, shut the lid and completely reclaim the space. It's great. He seems to like it too - they took about half the toys out of it and then Jake got in it to play with the ones that remained in the box. A fairly novel use for the box!

Survived BTS Night

It went pretty well. We were there for over an hour. I saw the other two kids in Jimmy's class, both Latino, which may explain why he was running around the living room this morning counting to ten in Spanish. The kids are very sweet.

I found out that the autism class that they were supposed to have at Cougar didn't happen. Jimmy might have to leave MP next year and go to a school in Prince William to get the education that he needs. That concerns me. They are also not doing the amount of ABA that I thought they would. His teacher says a colleague in Fairfax teaching in the PAC (Preschool Autism Class) says ABA makes these kids into little automatons. I don't necessarily want that, but I would love for him to be able to do more and be in a normal classroom and learn like everyone else. Maybe that can happen without ABA, but it seems to be the treatment of choice, the only one that has ever had any real documented results.

I am back to school this morning for a child study for occupational therapy. Then I think I am going to Coldstone for some ice cream therapy. I could use it about now.

Not Much to Report

Jimmy has completed his first week of medication. So far the only real effect I have noticed is that his sleeping more calmly. It's no longer like he is running a race while he is in bed. Beyond that, it remains to be seen. Starting this weekend, he gets a morning dose. Needless to say, I am curious about any chance with the added dose.

Tonight is back to school night for Jimmy's class, with our first look at the trailer. I am unsure if the class has moved into the trailer. I am a little annoyed with the school. They sent home all of this information and paperwork for the ECSE and Pre-K classes, yet all the content was geared towards the fourth and fifth grade classes, which have historically been the only grade levels at the school. I really wonder why these programs are such an afterthought to the administrators. Perhaps it is because they are marginalized populations to begin with. To be in Pre-K, it requires a need for services, whether it be special ed, part of the lower socio-economics levels in the community, or students for which English is a second language. At this point, I am very disappointed with apathy that I see being conveyed in the actions of the administrators in school district. Not to say that they haven't done a good many things right in the past, but I am not very happy with them at the moment.

Taking the Hobbits to Isengaurd

For all the Orlando Bloom fans out there... yeah, okay, he is sort of attractive.

Reasons Not to Hang Out for a Hurricane

A friend sent these pictures to me of what is supposed to be Katrina. I don't know anything of their origin, but the landscape isn't inconsistent with Mississippi. I would never wait around for anything that looked this spectacular.

Jake with Elmo and Jimmy and the doctor

Another from Sesame Place... Jake really loved seeing Elmo again. If it were just an hour and a few less toll booths closer, I would buy a season pass. It's a really fun theme park...

Jimmy's appointment - nothing really changed. He is hesitant to affix a permenent label to him, but autism would the one of his choice (as opposed to PDD-NOS.) In his case, it is more semantics rather than actual functioning level - cognitively high, poor social and communication. I still believe that it will improve with time and work. It's all still hard to deal with. I was in tears in front of the computer when I was in Dr. Bill's class Tuesday. Between that and my cable cutting out repeatedly, I have to listen to the playback because I got nothing from it one Tuesday.

The doctor did start him on Tenex. Although not FDA approved for this particular use, it is fairly commonly prescribed for impulse control and to a lesser degree hyperactivity. The underlying theory is if you have these things in check, focus will improve. We're only two days in now, so there is really no way to tell how it's going. The principle side effect is drowsiness and, well, he seems to be sleeping better.

It's been a looong week and I still have a day to go... And it's just the boys and me tomorrow night. Fun fun. Nah, I like hanging out with them... Just a little hard to go out with them.

The Day Has Come and Gone

I am too spent to really say anything right now. The appointment went well, but I need to breathe, so no report tonight. I am posting another photo (the boys and Grandma with Elmo) as well as the text of an e-mail I just received. What timing!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. Thegondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

By Emily Perl Kingsley

Sesame Place

Wow, I have been really remiss in posting. I will make up for it by offering a photo a day from our trip to Sesame Place yesterday.

We left the house at about 6:30 am. I make it to my mom's in Silver Spring about 7:10. We actually made it to the park at 10, right as it opened. Big Bird was one of the first characters we encountered.

I will post more about the trip tomorrow. I have been so swamped with school work, house work, work work, and trying to drag my fat butt to the gym that I have completely neglected this blog. I will be better this week, if for no other reason than I will likely have much more to say. I am going to the school board meeting tonight regarding Jimmy's program. We also have the BIG developmental pediatrics appointment this week. For those who haven't heard about this, this referral was given to me in early February of this year. September 20th was the first appointment I could get. I have easily filled out 25 pages of paperwork for it. This doctor will likely be the first to make some real recommendations for Jimmy and, as a result, there is a level of anxiety for tomorrow afternoon that I have never experienced before. Oh, and I have assignments due the next two days as well... I am completely stressed.

Never a Dull Moment

I went to bed last night at about 9:30. Just over an hour later, Jim yells for me. Jimmy has taken his diaper off and had an accident of the poopy variety. The antibiotics had given him diarrea. Apparently, he started cry, almost hysterically, and tried to clean it up himself before his dad got back upstairs to see what was wrong. We got him bathed, redressed, and he curled up next to me in bed for a while. I am spending today trying to get it out of the carpet. If you have any ideas, let me know.

Change in Plans

Jimmy has had an ear infection most of the week. We decided to postpone Sesame Place until next weekend. There is a silver lining - that's the weekend that Maria from the show will be appearing. Hopefully the weather will remain nice enough to wade in the pool or hit a waterslide.

Simply Beautiful

Read this post - it by a writer from NOLA's Times-Picayune...

Updating Life

So lots of stress lately. Jimmy is supposed to start school next week, but the building that he is supposed to be in still isn't completed. The head of special education is talking about tacking a half an hour on to his day to make up the time, which is unacceptable to me. It totally throws off his schedule at Kindercare and with the therapist. I have to send an e-mail to the head of special ed, the principal and the superintendent as soon as I am done with this post.

Grad school has started again. That is one of the few areas of my life that I always feel I have a handle on. Lots to do, especially since I am taking three classes this term. I was going to try to go to the gym on the days I have class, but I can't seem to do it. I run home, pick up the house, and make dinner before I go get the boys and come back for class. I am going to have to shoehorn the gym in on the other days. I have lost a little bit of weight, but it would be more if I was more diligent about the whole diet thing. I'll get there.

This weekend is pretty big - Momma and I (and probably the dh) are driving up to Philly to take the boys to Sesame Place again before the summer ends. I am very excited. When we were there last, we had so many great photos on our digital camera. The camera sadly went on the fritz and we lost them all. Hopefully Jacob will be just as excited to see Elmo again. I know it will be a long day, especially with Jake, who hates car rides, but I think it will be worth it. My mom will have a blast - I'm sure of that.

More later.

Words

So I wanted to look up this quote for something - I remembered a few words and that it was attributed to Nelson Mandela. I searched Google and found the quote. I also found out that Mandela didn't say it at all, that it came from a Marianne Williamson book. I don't think it makes the words any less true or beautiful, but somehow it bugs me still that it wasn't Mandela.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

New Orleans

I am nearly obsessed with coverage of the devastation in New Orleans and Biloxi, having just been there recently. To the point that it is now unhealthy. I just had a mild panic attack. It must be some sort of weird survivors guilt. I was just there - now the city's underwater, people are dead, and more are going to die because we aren't doing enough. Looters - fine. Send in the special forces. That would put an end to it really quickly. I am sick about it to the point that my hands are shaking as I type this.

I am attempting to do something. I am donating money to the Red Cross. I have started a collection for a women in my sister's office who is sheltering nineteen of her family members from New Orleans in her one bedroom apartment in Dallas. 19 people, including three teens and a four year old. They've already been enrolled in school in Dallas. These people have no home to go back to.

I grieve for New Orleans - a beautiful city with a gracious people. I grieve for those who died and those who are going to die because our government has failed them. I think we are plunging into a very dark period in this country where our country is about to fail all of us.

Life in the Cubes

I have been remiss in my posting for the last week. Sorry - UT began classes on last Wednesday. Jim left for Canada early Sunday morning. I am home alone with the boys until Wednesday - the same day that our new HVAC is being installed. Pain to the tune of $4000.

I posted a link that I am about to share with my management class on Blackboard. A pretty interesting article. More about my travails later - back to watching the news on New Orleans. I met some lovely people while I was there. I pray for them and their city.

I Love Public Education

So, I found out through the rumor mill that Jimmy's Early Childhood Special Education program had been moved from Cougar Elementary, on our side of town, to Manassas Park Elementary, on the other side of town. From a regular school building to a temporary trailer at the other school. I sent the entire school board an e-mail on Friday night when I found out. It is just ridiculous to me that a decision was made in mid-July and no formal notifications has been given to the parents a mere two weeks before school begins. The school starts and ends at earlier times - I still have no idea when the bus will be coming. I have to coordinate his schedule with his daycare and his speech and behavioral therapist - nothing exists in a vacuum in my world. I am really quite peeved at the lack of regard that the school has shown towards my child and my family. I talked to the new principal, who seems confident about the move and the placement in trailers. Overcrowding at the Kindergarten level over at the other school, blah, blah, blah. MPES has 4th and 5th graders in the school building and I am guessing the Pre-K and ECSE in the trailers. (Am I the only one who sees the wisdom moving the third grade over and keeping Pre-K and ECSE in the school with secure building?) He seemed surprised when I said my autistic son liked to open doors and escape rooms - roaming the hall is one thing, the potential to leave school grounds is quite another. I have somewhat resigned myself that I can't change this move occurring, but I am not done complaining about it. I have not yet begun to bitch at these folks.

Another Weekend

Well, we were supposed to take the boys to the fair tomorrow, but it is supposed to be 95 degrees out and humid to boot. Staying home isn't much better - the A/C is out at our house. Jim dug out his old window unit, but it nearly killed me because I think it was spewing mold spores into the air. My allegries are in full effect and the medication isn't cutting much. I didn't say anything to him because he's actually sick, really cranky, and unlikely to be sympathetic right now. I think the next two days are going to seem very long. Sunday, the girls and I are taking the babies (Jimmy and Jacob, Amy's baby James, and whoever Tori shows up with if she makes it - Maddie, Maddie, Maddie!!!) and going shopping! Jimmy needs a pair of boots and another belt - our feeble attempts at keeping him from going streaking at the daycare. That kid always prefers to be naked as a jaybird! Estrella suggested the boots - they've been fairly successful in the past, but he outgrew his last pair in the spring. I really hoped not to have to go the boot route in shorts weather - too "Village People" - but we can't wait for fall.

More later...

Rachel Goes to Richmond

Well, I did okay. Delegate Ware interrupted me about two minutes in to say that they needed to hear more (we were supposed to have three) which was unnerving. I did my thing, but had to hack like the last paragraph and a half off because of the lovely Delegate Ware. I had to take both boys, which was a trial, because Jim wouldn't commit to picking Jake up if I got stuck in Richmond (he wound up staying at work until 8:20.) Jimmy was an angel. Jake was a devil, especially in the car. He fell scream for an hour plus, basically from the Prince William Parkway to Kings Dominion. He feel asleep about half and hour before we arrive in Richmond. The ride home was slightly better - only 40 minutes of screaming then. I feel better for having done it, but the bill got voted down 9-1. They did say something about a task force to look at insurance and autism. We'll see.

Did aqua aerobics last night and I am finally going to the doctor today to see about my damn foot. It still hurts. Walking around New Orleans definitely did not help.

Off to Richmond

This afternoon, I am off to Richmond with Jimmy to appear at a public hearing at the General Assembly Building for the Special Advisory Commission on Mandated Health Insurance Benefits on behalf of Senate Bill 1049. This bill would require medical insurers to offer riders of coverage for children under the age of five with developmental delay diagnosis. I am one of four women from Prince William County (I have not met the other three) going to testify. I prepared my testimony and shared it with them and they have use it to address other areas where I was lacking. I am all for them doing something, but a rider probably isn't the way to go. In Kentucky, a rider similiar to this is $500 a month. It's nuts. I am sick of the denials of Kaiser when it comes to Jimmy's care. Even though this bill isn't enough and won't help Jimmy directly, it's nice to feel like I am doing something. I also hope to generate interesting in more sweeping reforms for autism coverage in Virginia. I am pasting my testimony below. Happy reading...

My name is Rachel Kirkland. I am a constituent from Manassas Park, Virginia and a state employee at George Mason University in Fairfax. This young man with me is Jimmy Kirkland. Many people here today are more practiced at speaking on this subject than I am. Many can offer more detailed explanations and opinions of what this bill would or would not do for developmentally delayed children. I think Susan Murray’s written testimony does an excellent job in detailing the issues and concerns around them. I come today to share my experiences and my point of view as a mother and state employee. My son is four years old and was diagnosed with PDD-NOS, a disorder on the autism spectrum, in April 2005, after several years of concerns being expressed to our health providers at Kaiser Permanente. Although Jimmy will never personally benefit from the passage of SB1049, I wanted to come here and give my testimony in hopes that this commission will pass this bill to help children like my son.

I became aware of this legislation as a result of my dispute with my insurance company, Kaiser Permanente. At the time Jimmy was diagnosed by the neurologist from Children’s Hospital in April, she recommended a treatment plan of occupational therapy as well as speech therapy. Our pediatrician concurred with her recommendation and put forward referrals for approval by Kaiser. Kaiser approved a mere twelve sessions of speech therapy and denied the occupational therapy entirely. When I looked into appealing the decision on the occupational therapy, I found that I would likely have little success. The contract that the Commonwealth of Virginia has for state employees provides for occupational therapy in cases of rehabilitation only – when a patient has had skills previously and lost them due to illness or injury. OT, in this case, is considered habilitative in that it would assist Jimmy in acquiring skills he does not already have. As a result Kaiser will not cover it, regardless of the recommendations of the neurologist who diagnosed him with autism or their own physician, who concurred with the findings of the neurologist.

Not wishing to seem ungrateful for what is covered, twelve sessions of speech therapy at a half an hour a session for a four year old that is just starting to develop language is woefully inadequate. In reality, even though the referral has been approved, Kaiser deals with only one speech center in Northern Virginia, an hour away from our home in Manassas Park. We have been on their waiting list for several months now just to get a slot on their schedule. Some at Kaiser have suggested to me that helping Jimmy is role of the school system, that systems like ChildFind exist to provide help to these children. Jimmy has been attending Cougar Elementary School’s Early Childhood Special Education preschool class since January 2004, when he started the program at age 2½. While I look at these teachers with awe at what they have been able to accomplish with my son, the reality is that children like Jimmy need one-on-one care and therapy to gain the skills they need to function in the world, to overcome this medical diagnosis on the autism spectrum. No one would ask a teacher to set a broken leg, perform brain surgery, or teach someone with a spinal injury how to walk. Leaving these medical and therapeutic functions to educators is wildly inappropriate. Special education should supplement medical and therapeutic care for children like my son, not serve as a replacement for it.

The reality for my day to day life is, in addition to the cost that one might anticipate in raising a family such as housing and daycare; I pay about $40 an hour to a therapist from a place called the Matthew Center in Manassas. This therapist delivers speech and social therapy to Jimmy at his daycare center. After an assessment of his level of function and his progress, she recommended eight hours a week of therapy for my son. Financially, I am stretching to pay the two to four hours a week I have her deliver, running up credit card debt to free up the cash to provide the most basic therapeutic care my son needs. Doing intensive therapies that Jimmy could really benefit from like ABA (Applied Behavior Analysis) is out of the questions because of the lack of funds and insurance coverage. When you are looking at your life and realize that you child has needs that you are unable to meet, it is heartbreaking. It is an enormous stress on parents, families, and the larger community. I believe and love this child more than anything in the world and his future is big question mark because I can’t get the care he needs now. Since his is a medical diagnosis, these services should be covered in the same manner as his visits to his regular doctor or specialist. There shouldn’t be a distinction in habilitative versus rehabilitative therapy – therapy recommended by a doctor should be provided and covered, period.

Stronger laws are needed to force insurers to provide needed care for children with the medical diagnoses that fall under the umbrella of the autism spectrum disorders. While SB1049 is a step in the right direction and one that would benefit a number of families, I would be remiss if I didn’t say that it still isn’t enough. It should be part of any insurance coverage, not an additional rider to be paid for by Virginia families. No one would dream of asking for this from someone whose policy included someone with chronic condition like asthma. In addition, my son’s needs aren’t going to go away at age five. Kaiser refused to write a referral to have his developmental delays assessed by a specialist until the age of the three. It was a four month wait for an appointment. Currently, I am anxiously awaiting an appointment with a developmental pediatrician on September 20th at Children’s Hospital. I made this appointment in early February of this year – and, yes, I took the first one they had available! Hopefully, you are beginning to see the problem with setting a limit to coverage for under the age of five – nothing in the world of autism happens quickly, ever.

Although SB1049 should go forward, be voted on, and hopefully pass in the General Assembly and become law, you cannot stop there. Habilitative care and therapy for all children with autism should be provide and covered by insurers in Virginia. It is a benefit not only to children like my son and families like mine, but to all taxpayers in Virginia. By making the investment now in these children, allowing them to receive the medical care and therapies they need, can they achieve the basic functioning that the rest of us are fortunate enough to take for granted. Through this investment, children like my son can go on to become taxpaying citizens rather than draining resources through disability payments.

Look at my child. I watch him read books and laugh at the jokes that Cookie Monster makes on Sesame Street. He can’t converse with you, but he can put puzzles together quickly and figure out a way to get disassemble the child safety knob so he can get in the basement. Once he gets to know you, he will take you by the hand and give you a tour of the house. He laughs, cries, and loves like any other child. He deserves my very best and I give it to him every day. He deserves your best as well. I am here today for every other mother in Virginia who has an exceptional child like Jimmy. They all deserve the best care and therapy available and have a right to just that. That is why I ask you on behalf of mothers of children on the autism spectrum in Virginia to vote for SB1049 and to continue to explore ways to meet these needs of children with developmental disabilities in this state.

Thank you.

New Orleans - Day 3

Day 3 is sort of a blur, albeit it a mildly alcohol induced one. I didn't mean for that to happen. I really barely drink at all anymore - as Mommy, you are always on duty - so even the most minor amount of booze affects me pretty strongly. We sort of wandered around aimlessly, checked out a flea market, went in a store called Sideshow. DH was hoping to see a real sideshow and was bitterly disappointed. They did have a four legged baby duckling on display - stuffed, of course.

Sunday night went back out to another fantastic resturant for dinner. The waiters worked as a team - our team was Jacob and Tyler. Both cute young menu and they bear the name of my youngest son. I was really amused by the coincidence. After dinner, we walked Bourbon Street yet again. DH wanted to go to a cabaret, but in New Orleans that is a euphemism for a strip club. I don't know if he honestly expected a stage show that didn't involve a pole, but ultimately I let him go inside a cabaret... and three other strip clubs. They do stuff in those places that I really never dreamed of and hopefully never will. I did talked to some really nice young women who had kids, were working their way through school... somewhat cliched, but I was struck how each and every one of them aspired first and foremost to get out of what they were doing.

I guess I can cover day four really quickly - we were supposed to be on a 5pm plane, but I managed to get us on standby on the 1pm, which was almost empty. I really wanted to get home to the boys. Jacob didn't seem to care as much - as you can tell from the photos, he was having a great time being an only child at his grandparents house - but Jimmy giggled and bounced up and down on my mom's chair when he saw me. I am so happy to be home with my boys.

New Orleans - Day 2

Saturday morning, we went for a late brunch at the Court of Two Sisters. The food was great, but I can't say it was worth $25. We walked around Jackson Square and returned to the hotel before heading out to pick up the car.

A friend of the dh was going to be having his debut mixed marital arts fight at the Imperial Palace in Biloxi, Mississippi at an event called Reality Combat. DH found out two days before we left and asked if I would be willing to go. A casino and the opportunity to scratch one of the few states in the union that I haven't been to off my list. Sure, I'll go.

I had made mention of this plan to a friend who had spent some time in Pascagoula for business. Biloxi was described to me as the "Redneck Riveria" by this person, who was so right!!! It was just insane. First, everyone in Mississippi smokes. I am convinced of that. Never in my life have I seen the air so thick with smoke and lit cigarettes in everyone's hand. Of course, there is no obvious restriction on where people can smoke in casinos or convention centers. It was foul, completely nasty.

We found the fighter we had come to see about an hour after arriving at the casino. KC is a baby faced airman who trains MMA in the evenings. He's also 6'7," but when he came out to greet us, he looked like this gangly kid of 23 who still has braces. Yes, braces. Why get your teeth fixed if you get beat on in your spare time. We also spent a long while talking to Angel Espino, this fighter from Houston. Another guy who looked less menacing, but was obviously a well trained athlete.

We sat through almost all the fights Saturday night. KC was on the undercard, the last fight on the undercard. He lost, but in his defense, he lasted the longest of the losers. He make it almost all five minutes of the first round and was (in terms of scoring and dominance) winning the fight until his opponent racked him with a low blow. An unintentional low blow. Okay, it was the third unintentional low blow, but the only one the ref called as such, since KC was crumbled on the mat. Ladies, what do I mean by a "low blow"? He was hit in the nuts. Hard. Not once or twice, but three times. That he lasted as long as he did was insane. The opponent finally got a choke on him and submitted him late in the first round. Angel, the guy we had talked to earlier, fared much better. He won his fight, I think in the first round, by submission. It was great to see him win.

After a bite to eat, we got back on the road to New Orleans. I was relieved. I never want to go back to Mississippi. Why? Well... There was this whole Texas versus Louisiana theme to several of the fights, the theory being that the Louisiana fighters were the hometown boys and the Texas fighters were the visiting team. When the Louisiana fighters were announced, they were warmly received. The Texas fighters were less so. The white Texas fighters received a smattering of applause. The few Texas Latinos that fought however, like Angel, met with some low booing or complete indifference. Made it all that much better when Angel won, in my mind. Of course, there was a black fighter. The crowd was mixed, but predominately white. When the black fight was getting pounded in the cage, there was some drunk local behind me yelling "Beat that n-." Seriously. And there was a black woman sitting three people over from him who was pissed. And he knew she was there - he said it anyway. Didn't care a lick who he offended. We (being myself, the husband, and the kids from New Orleans who we befriended and sat with) all turned to look at him. He was like "what, I said that out loud?" (like he didn't mean to say it.) Then he added "I'm an American. I have the right to free speech." I so wanted to turned around and say, "Sir, if you can read, which I doubt, I don't think you have ever taken the time to read either the Constitution or the Bill of Rights." He wasn't the only one booing or making comments about the non-white fighters... it was, in my opinion, just ugly. It reinforced my notion that the Deep South is a very ugly place that I want no part of.

New Orleans - Day 1

Any day that I begin at 3:45am isn't going to be a great one. I just felt like the timing was too close in terms of making the flight, etc... Of course, I am the woman that likes to be everywhere early, especially the airport. Dulles was a comedy of errors. Jim had us get in one line to see about an upgrade, pulled us out thinking he found a shorter line around back, when it was just as along. I, of course, went to the to the electronic check in screen and managed to do the upgrade, no sweat and no line. Does anyone listen to me? Noooo! The TSA check in was a sea of people. Once we got past that and on our plane, things seemed to be fine, until we had to pull back up to the gate after push back because a light indicating smoke came on in the cockpit. They finally figured out was it was and we were allowed to leave, after several anxious moments where I was unsure if we would even get off the ground. Of course, we were (I'm serious here) 21st in line for take off and it was another 40 minutes until we were off the ground...

We got to New Orleans. I nearly got car sick on the cab ride from the airport, thanks to the skillful driving. We checked into our hotel, got lunch, walked around the Riverwalk and Harrah's and went back to our room for a nap. The day was pretty unremarkable until dinner...

We went to NOLA. It's one of Emeril Lagasse's resturants and it was nothing short of amazing. I had their Taste of NOLA special - $50 and an extra $30 for the wine pairing and totally worth every penny. So here is what I had for dinner on Friday night...

Jumbo Lump Crab Salad with Roasted Beets, Toasted Walnuts, Baby Greens and Basil Pesto

2004 Coleman Pinot Gris (Willamette Valley, Oregon)

Sauteed Chanterelles with Puree Celery Root, Rapini, Porcini Oil and Chardonnay Butter

2002 Macon-Vergisson La Roche 'Caniculus', Verget (Burgundy, France)

Pan-Seared Filet Mignon with Crumbled Goat Cheese, Barley Risotto, Apple-Smoked Bacon Lardons, Haricots Verts and Huckleberry Veal Reduction

2002 Foley Syrah (Santa Rita Hills, California)

Dessert on the Taste of NOLA was Lemon Chess Pie with Citrus-Blueberry Coulis and Fresh Berries. Since I was in New Orleans, I swapped it for Pecan Pie, which was amazing as well. We also had this amazing sweetbread appetizer. The meal was phenomenal. We went to Pat O'Brien's for drinks and hung out on Bourbon Street. When I finally hit the bed that night, it was spinning. I didn't think I had that much to drink, but apparently I was wrong...

Jacob's Creation

Jacob's grandfather sent this photo as well. Jake built this all by himself. Grandpa was impressed.

Train Time

Apparently he put together the track all by himself... He usually has to fight his brother for the trains at home. Since he went to one set of grandparents and his brother went to the other, there was no competition.

What Fisher-Price Doesn't Want You to Know

As I can, I will post details of my New Orleans adventure today and tomorrow. For now, I am going to post a few pictures of what Jacob was up to while I was gone. The red bandana illustrates, that truly anything can be a toy when you are under the age of two...

Off for a bit

Gone to New Orleans for the weekend. I am sure I will have stories next week. Have fun!!!

Fun with Aqua Aerobics

I sent an e-mail to a friend earlier with this story, but I have to share it with everyone. It was just too funny.

I screwed up my foot at the gym, so I did aqua aerobics instead of the treadmill last night. Mostly older Asian women, but there was a younger twenty something girl and her late teen brother. He spent most of the class smiling at me - I wonder if he had any idea how old I am? Anyway, part of the reason I think he was smiling is that I had a horrible time with the swimsuit yesterday. I have lost a bit of weight since I purchased my swimsuit at the beginning of the summer, it was kind of low cut in the front to begin with - well, one of the twins popped out for an appearance at the end of class. I think my young friend had watched me long enough to figure out it might happen, which was probably why he was smiling so much. I am hoping he was the only one that saw. Needless to say, if I do that class again, it will be with a different, better fitting swimsuit.

Back to Normal

Everyone is healthy again. The living room is destroyed - it actually stayed clean when the boys were sick. I'm working at the public library today, but I will spend the remaining part of the weekend cleaning. Classes done - two and a half weeks off!!! Yay! And I'll be back to the gym tomorrow and going to New Orleans next weekend. In my life, this is almost a relaxing pace...

One thing to add... when Jimmy was sick, his brother was bothering him. He looked at Jake and said "I want goodbye. Leave." Real, if not correct, communication. Pretty awesome.

Further Eruptions

This time it is Jimmy with the bug. Puking everywhere. We are off the pediatrician shortly. He was the first to baptize the new couch that I bought from my friend Sharon.

Here lies "New" Couch
9 July 2005 - 4 August 2005
Almost made it a month.
RIP

Irrelevant Aside

According to Charlie Murphy, "The Chappelle Show" is dead... nooooooooooo!

Cakey Jakey Part 2: Defrosting

My mother handing Jake off to me with baby wipes, in our feeble attempt to clean him up. He was just covered head to toe in frosting.

Photos Con't...

Playing with noise makers and unwrapping presents...

More Birthday Photos

Myself and the birthday boy with his cake... I was tell him to blow out the candles. I hate candid photos... for those who haven't seen me, my hair is usually down and I am generally less shiny. It was oppressively hot that day...

Back to Daycare

Jake's back at daycare this morning. He seemed to be fever free and hasn't puked since before I went to work yesterday. He still looks punky - he was standing in Ms. Nelly's room, looking at all the babies crawling and toddling around him and was looking like "I'm too tired for this crap." Jimmy felt warm this morning, so Jim was going to dose him with Advil before putting him on the school bus. I half expect a phone call from daycare to come get one or both today. On the off chance that it doesn't happen, however, I have my gym bag packed so I can squeeze in some cardio at least before picking the boys up and class.

Volcanic Eruptions

Jake's home sick. Both Jimmy and Jake were under the weather when they got up yesterday morning, but Jake has just puked everywhere since lunch yesterday. I have managed to keep him off the new couch, but that is probably the only surface of the first floor that he has not annointed. Poor thing. I have changed clothes about six times in the past twenty four hours and showered several times - I still think I reek of puke. I work until 8 tonight, but I am going to run home, take care of the baby, clean up the house, and do laundry. But before I can go home, I have to find some children's Tylenol in suppository form for Jake and administer it to him. Joy. Oh, and it is the last week of summer session, so I have lots of work do. I lost a whole day of reading yesterday to taking care of the kids, so I now have to finish one book, read three more, write a book talk and four reader responses. Fortunately it's young adult lit, so they are quick reads, but it is still a pain. Until about a week ago, I was ahead on the reading. And now it has all fallen apart.

More tomorrow, when I hopefully have less to do.