Wednesday, November 30, 2005

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.

Monday, November 28, 2005

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.

Sunday, November 27, 2005

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!

Saturday, November 26, 2005

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!!!

Thursday, November 24, 2005

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.

Tuesday, November 22, 2005

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.

Monday, November 21, 2005

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.

Wednesday, November 16, 2005

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?

Monday, November 14, 2005

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...

Saturday, November 12, 2005

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.

Wednesday, November 09, 2005

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.

Tuesday, November 08, 2005

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.

Monday, November 07, 2005

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.