Wednesday, August 31, 2005

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.

Monday, August 29, 2005

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.

Tuesday, August 23, 2005

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.

Friday, August 19, 2005

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...

Thursday, August 18, 2005

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.

Wednesday, August 17, 2005

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.

Tuesday, August 16, 2005

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...

Thursday, August 11, 2005

Off for a bit

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

Tuesday, August 09, 2005

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.

Saturday, August 06, 2005

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.

Thursday, August 04, 2005

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

Wednesday, August 03, 2005

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...

Tuesday, August 02, 2005

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.

Monday, August 01, 2005

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.