There is much floating around about yeast and autism, that a yeast overgrowth, often a result of the overprescription of antibiotics causes many of its most severe symptoms. That would fit with Jimmy's onset and history perfectly. His regular developmental ped isn't a fan of the idea, so I am now looking for a doctor that would be willing to look into biomedical interventions like the ones listed below.
"There are many safe methods to treat yeast overgrowth, such as taking nutritional supplements which replenish the intestinal tract with 'good' microbes (e.g., acidophilus) and/or taking anti-fungal medications (e.g., Nystatin, Ketoconosal, Diflucan). It is also recommended that the person be placed on a special diet, low in sugar and other foods on which yeasts thrive. Interestingly, if the candida albicans is causing health and behavior problems, a person will often become quite ill for a few days after receiving a treatment to kill the excess yeast. The yeast is destroyed and the debris is circulated through the body until it is excreted. Thus, a person who displays negative behaviors soon after receiving treatment for candida albicans (the Herxheimer reaction) is likely to have a good prognosis.
Please note: treatment for candida albicans infrequently results in a cure for autism. However, if the person is suffering from this problem, his/her health and behavior should improve following the therapy."
I have no illusions, but I would be willing to try almost anything within reason. This, to me, is reasonable.
A more thorough report can be found at the Healing-Arts.org.
Wednesday, October 10, 2007
Monday, October 08, 2007
Hello Governor Kaine!
I say that because we had the great honor of meeting him. The only reason I don't have a picture is because the nice man who offered to take a picture hit the wrong button on my phone (if we meet again, Mr. Governor, I would like a second chance of getting a photo of you and Jimmy together!)
So, when we met, I asked you about the possibility of mandating coverage of therapeutic and habilitative services for children with autism and other developmental disabilities. You asked if other states provided coverage for these services and I rattled off California, New York, and Indiana. This document from Connecticut actually indicates that there are sixteen providing coverage in some form or fashion. I personally am a big fan of Indiana's language as stated in this document:
"Indiana. Policies must include coverage for pervasive developmental disorders, including autism. Coverage may not be subject to dollar limits, deductibles, copayments, or coinsurance provisions that are less favorable to an insured than those that apply to physical illness. Insurers and HMOs cannot deny or refuse to issue coverage on, refuse to contract with, refuse to renew or reissue, or otherwise terminate or restrict coverage on an individual because of a pervasive developmental disorder diagnosis (Ind. Code §§ 27-13-7-14. 7 and 27-8-14. 2-1 through 27-8-14. 2-5)."
Pennsylvania has been considering legislation there, which the governor there endorses.
Currently, insurers in Virginia are not required to covered the needed habilitative services for autistic children, including but not limited to speech therapy, physical therapy, occupational therapy, and Applied Behavioral Analysis, a therapeutic approach that helps these kids achieve language, social skills, and appropriate behaviors so they can better integrate into social, school, and community settings.
Instead of covering these services, the health insurance companies are essentially passing these needs to the state and county governments. Early intervention programs and the public schools cannot meet the adequately meet the needs of this growing population of children with autism and other developmental disorders. When Jimmy was diagnosed at the age of 4, 1 in 166 children was diagnosed with autism. A year later, it was 1 in 150. Now in boys alone (boys make up 75% of diagnosed cases), the number is 1 in 94.
Florida has been considering legislative activity on this matter. Their Austism Society has a talking points document that illustrates the importance of this coverage. In Florida, Medicaid covers these needs and private insurance does not.
"Parents who consistently provide therapeutic services, with after tax dollars, often risk bankruptcy or sometimes fraudulently divorce to qualify for Medicaid. In many cases this increases the financial burden on the State, since the State must also then provide care for siblings and indigent spouses.
Insurance companies and health maintenance organizations are in a much better position to negotiate lower rates and better quality service. Eventually, coverage costs will decrease as more professionals are trained to work with autism. Coverage will assume the cost of treatment at a lower rate.
The average cost of cumulative therapy for children with autism is approximately $20,000 per year and steadily decreases when recommended frequencies are administered consistently.
The targeted interventions are scientifically proven effective treatments for autism. They have the equivalent effect as a surgical procedure or medication treatments for other afflictions.
The estimated increased cost to insurance providers is approximately $4 million, considering recent State increases in waiver eligibility, which would be spread over all policyholders. This represents less than a meager 1/12th of 1% increase, which equates to less than 4 cents per $500."
Although early intervention is best, intensive services (which reduce overtime as kids improve) can begin at any age and dramatically improve the quality of life for children with autism. From that same Florida document:
"Children who go without the essential treatment may never have the ability to master basic life skills and they may become a danger to themselves and to the community. For every $1 we spend before the age of 5 we save $7 on lifelong care."
Schools have a role in educating these kids. The state may have a role in helping with needs like respite (needed, since the divorce rate in families with autistic children hovers around 85%.) Medical insurers have a role too - they should made to share in the responsibilty for therapuetic interventions that this medical diagnosis requires to allow them improve and live a full and meaningful. That is what I want for my son Jimmy. It's what any mother wants.
I know you thought he was cute and he is. That is my baby. He's six, but he is my baby. I love him with every fiber of my being. As difficult as this has been, I don't think I could change a thing. My life is richer for having him in it. Although I wish he could be like everyone else, I thank God everyday for him. I hope you have an opportunity to meet him again. He's a lot of fun.
Sir, not to be over the top, but it was really an honor to meet you today. I look forward to hearing from your staff soon.
Many thanks,
Rachel Kirkland
And thanks to everyone else that I met there. From the bottom of my heart, thank you E.J. Scott for the invitation and to Ernie Porta for dragging me up there, pushing me past the State Police detail, and introducing me to Governor Kaine. I appreciate it greatly.
So, when we met, I asked you about the possibility of mandating coverage of therapeutic and habilitative services for children with autism and other developmental disabilities. You asked if other states provided coverage for these services and I rattled off California, New York, and Indiana. This document from Connecticut actually indicates that there are sixteen providing coverage in some form or fashion. I personally am a big fan of Indiana's language as stated in this document:
"Indiana. Policies must include coverage for pervasive developmental disorders, including autism. Coverage may not be subject to dollar limits, deductibles, copayments, or coinsurance provisions that are less favorable to an insured than those that apply to physical illness. Insurers and HMOs cannot deny or refuse to issue coverage on, refuse to contract with, refuse to renew or reissue, or otherwise terminate or restrict coverage on an individual because of a pervasive developmental disorder diagnosis (Ind. Code §§ 27-13-7-14. 7 and 27-8-14. 2-1 through 27-8-14. 2-5)."
Pennsylvania has been considering legislation there, which the governor there endorses.
Currently, insurers in Virginia are not required to covered the needed habilitative services for autistic children, including but not limited to speech therapy, physical therapy, occupational therapy, and Applied Behavioral Analysis, a therapeutic approach that helps these kids achieve language, social skills, and appropriate behaviors so they can better integrate into social, school, and community settings.
Instead of covering these services, the health insurance companies are essentially passing these needs to the state and county governments. Early intervention programs and the public schools cannot meet the adequately meet the needs of this growing population of children with autism and other developmental disorders. When Jimmy was diagnosed at the age of 4, 1 in 166 children was diagnosed with autism. A year later, it was 1 in 150. Now in boys alone (boys make up 75% of diagnosed cases), the number is 1 in 94.
Florida has been considering legislative activity on this matter. Their Austism Society has a talking points document that illustrates the importance of this coverage. In Florida, Medicaid covers these needs and private insurance does not.
"Parents who consistently provide therapeutic services, with after tax dollars, often risk bankruptcy or sometimes fraudulently divorce to qualify for Medicaid. In many cases this increases the financial burden on the State, since the State must also then provide care for siblings and indigent spouses.
Insurance companies and health maintenance organizations are in a much better position to negotiate lower rates and better quality service. Eventually, coverage costs will decrease as more professionals are trained to work with autism. Coverage will assume the cost of treatment at a lower rate.
The average cost of cumulative therapy for children with autism is approximately $20,000 per year and steadily decreases when recommended frequencies are administered consistently.
The targeted interventions are scientifically proven effective treatments for autism. They have the equivalent effect as a surgical procedure or medication treatments for other afflictions.
The estimated increased cost to insurance providers is approximately $4 million, considering recent State increases in waiver eligibility, which would be spread over all policyholders. This represents less than a meager 1/12th of 1% increase, which equates to less than 4 cents per $500."
Although early intervention is best, intensive services (which reduce overtime as kids improve) can begin at any age and dramatically improve the quality of life for children with autism. From that same Florida document:
"Children who go without the essential treatment may never have the ability to master basic life skills and they may become a danger to themselves and to the community. For every $1 we spend before the age of 5 we save $7 on lifelong care."
Schools have a role in educating these kids. The state may have a role in helping with needs like respite (needed, since the divorce rate in families with autistic children hovers around 85%.) Medical insurers have a role too - they should made to share in the responsibilty for therapuetic interventions that this medical diagnosis requires to allow them improve and live a full and meaningful. That is what I want for my son Jimmy. It's what any mother wants.
I know you thought he was cute and he is. That is my baby. He's six, but he is my baby. I love him with every fiber of my being. As difficult as this has been, I don't think I could change a thing. My life is richer for having him in it. Although I wish he could be like everyone else, I thank God everyday for him. I hope you have an opportunity to meet him again. He's a lot of fun.
Sir, not to be over the top, but it was really an honor to meet you today. I look forward to hearing from your staff soon.
Many thanks,
Rachel Kirkland
And thanks to everyone else that I met there. From the bottom of my heart, thank you E.J. Scott for the invitation and to Ernie Porta for dragging me up there, pushing me past the State Police detail, and introducing me to Governor Kaine. I appreciate it greatly.
Thursday, October 04, 2007
Happiness is...
... not having to explain why your son lay down in the middle of the floor in McDonald's. As you are trying to place you order. And he is chirping like a dolphin. Thank God the guy in front of me looked at me sympathetically and said he had a special needs child. I find reassurance in moments like that.
One of my old friend/co-worker's dad...
...made the playoffs. I am torn because I like the Rockies, but I can't root against Charlie Manuel. His daughter took my job after I left it to go to my current employer.
Go Phillies!!!!
Go Phillies!!!!
Monday, October 01, 2007
This election cycle...
Wow, I have had an interesting morning. I called a couple of the local campaigns regarding the whole autism issue. I talked to Chuck Colgan's (incumbent running for State Senate) campaign manager this morning and he is going to talk to him about autism and my concerns about health insurance, education, and respite funding via the waivers. I should hear back from him shortly. I also called Jeanette Rishell's office this morning and should get a call back from her as well - she is running for the House of Delegates. I need to try to get ahold of someone at Jackson Miller's campaign, though he and I have talked about this issue before.
What really amazed me was Bob FitzSimmond, who is running against Colgan. I spent 42 minutes talking to him on the phone. He spent some time on the Community Services Board, so while he doesn't know as much about autism, he was very willing to listen and had a good many ideas. I was kind of impressed.
None of this should be construed as an endorsement, because I am not 100% who I am voting for yet - mostly because of the caliber of candidates. I thought that some of these people just didn't care, but I am impressed by how much they actually do.
I should really get a hobby though... this is what I am doing with my son's sick day. Maybe I will try to clean house or something. I have no life.
What really amazed me was Bob FitzSimmond, who is running against Colgan. I spent 42 minutes talking to him on the phone. He spent some time on the Community Services Board, so while he doesn't know as much about autism, he was very willing to listen and had a good many ideas. I was kind of impressed.
None of this should be construed as an endorsement, because I am not 100% who I am voting for yet - mostly because of the caliber of candidates. I thought that some of these people just didn't care, but I am impressed by how much they actually do.
I should really get a hobby though... this is what I am doing with my son's sick day. Maybe I will try to clean house or something. I have no life.
Thursday, September 27, 2007
Bus Update
As of Monday, Jimmy is back on the bus. They have new driver who will be picking him up at 7:57 a.m., with him arriving at school at about 8:15. It only took a month, but I am glad it is finally straightened out.
After all the grief I have given them, I bet they don't mess with his bus route next year. :-)
After all the grief I have given them, I bet they don't mess with his bus route next year. :-)
Wednesday, September 26, 2007
Jenny McCarthy is on Larry King Live
I am going to record it. I bought the book. She is a believer in mercury, which isn't something I necessarily subscribe to. She does GFCF, which I am seriously thinking about pursuing. It scares me because I don't know where to begin or what Jimmy would actually eat, but I am starting to think it is worth a try. I just caught him pooping in the bathroom sink.
Tuesday, September 25, 2007
Poop factory
Yes, we are back to playing in it. It's like he is fascinated by it. He even took off his pants and pooped in Buster's water. The bathtub is popular as well. I don't get it. He sometimes get multiple baths a night to address the problem. I am upstairs with him right now for his second tonight. He pooped in the first one.
I am getting good reports from school however, as well as his therapy sessions. I guess to some degree home is better, but this whole poop thing does get me down.
I got my foot checked today. I pulled a tendon. Mercifully, it doesn't require a cast. I have special inserts for my shoes however for the next several weeks. I can also go back to the gym, though I am limited to low impact like the bike and the elliptical. But at least I can go. I hope to end this cycle of getting injured handling Jimmy.
Before I go, a hot stock tip - invest heavily in the company that puts out Clorox Wipes. I go through a ton.
I am getting good reports from school however, as well as his therapy sessions. I guess to some degree home is better, but this whole poop thing does get me down.
I got my foot checked today. I pulled a tendon. Mercifully, it doesn't require a cast. I have special inserts for my shoes however for the next several weeks. I can also go back to the gym, though I am limited to low impact like the bike and the elliptical. But at least I can go. I hope to end this cycle of getting injured handling Jimmy.
Before I go, a hot stock tip - invest heavily in the company that puts out Clorox Wipes. I go through a ton.
Friday, September 21, 2007
My heart nearly stopped...
I dislike George Bush - here is another reason. He make a comment that was misunderstood, leaving everyone thinking my hero, Nelson Mandela, was dead. I know I am a dork for saying Mandela is my hero, but I think he is a beautiful, beautiful man who survived a great deal and never gave up, no matter how bleak the circumstance.
Thursday, September 20, 2007
Maybe I will buy her book...
I generally don't read autism books - it's not exactly leisure reading for me - but I just might pick hers up.
McCarthy calls Carrey 'autism whisperer'
Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.
"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."
McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.
"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."
McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.
McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."
She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.
"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."
McCarthy calls Carrey 'autism whisperer'
Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.
"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."
McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.
"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."
McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.
McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."
She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.
"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."
Tuesday, September 18, 2007
Okay, so I got behind again...
Jimmy is now being taken to school. After demanding a solution to the bus situation late last week, Jimmy rode the regular ed bus on Friday. It was a disaster. He wouldn't stay in his seat, he melted down completely, and he was pretty stimmy for the rest of the day. After that, the school system agreed to have someone meet Jimmy at 8:05 at the building. Yesterday went off without a hitch. Theoretically, they have an additional bus driver starting in October, so the drop offs aren't forever. It's just a shame that it took this long to get resolved.
Yesterday, we also had our FAPT team meeting. They are continuing consult and direct services for another 90 days. I am pleased about that. I also found out why our caseworker over at the Community Services Board hadn't responded to my e-mails regarding getting a psych eval for Jimmy so I can get him on the DD Medicaid Waivers waiting list. He left abruptly. Nice to know. At least now I have another contact to get going with that.
That's the brief version. I have finished with the last class I am going to take for a while, so I should have time to recommit myself to my blogging.
Yesterday, we also had our FAPT team meeting. They are continuing consult and direct services for another 90 days. I am pleased about that. I also found out why our caseworker over at the Community Services Board hadn't responded to my e-mails regarding getting a psych eval for Jimmy so I can get him on the DD Medicaid Waivers waiting list. He left abruptly. Nice to know. At least now I have another contact to get going with that.
That's the brief version. I have finished with the last class I am going to take for a while, so I should have time to recommit myself to my blogging.
Friday, September 07, 2007
Today's pickup time...
8:26 a.m.. Not once did the school bus pick him up in a timely fashion. Jimmy was late to school every single day.
Thursday, September 06, 2007
City Districts Open with Few Problems (unless your kid is special ed)
The reporter who covers the local schools is great, but in this case, I think she has been misinformed. I have heard rumblings on the local autism listservs about school districts being short drivers - regular ed students are seemingly given some sort of priority in terms of students. Their routes are the first to be straightened out and their buses arrive on time. Special ed students, on the other hand, are the last priority for pick up and arrive to school late. Jimmy has not been picked up before 8:30 this week - the same time that the tardy bell rings at his school. I am furious - it's almost like he isn't given the same instructional time as other students because of his disability, that because of the serious nature and the need for him to ride a bus with an aide, the school system doesn't really care when he shows up. No one person has said that, but that is how I feel. It is my understanding that nothing will change for us until they hire another driver (they are down two now in Manassas Park.) Why should he lose out on his education because he rides a different bus?
I know the natural solution would be to have my husband drop him off. The kiss and ride isn't equipped for a child who does not separate well and can't walk to the door by himself. Moreover, most schools have a holding area for hundreds of students until the bell rings. Jimmy couldn't function there either. So Jimmy misses instructional time and my husband gets to be late to work everyday until this problem is solved. I wonder how long his boss will tolerate that.
I know the natural solution would be to have my husband drop him off. The kiss and ride isn't equipped for a child who does not separate well and can't walk to the door by himself. Moreover, most schools have a holding area for hundreds of students until the bell rings. Jimmy couldn't function there either. So Jimmy misses instructional time and my husband gets to be late to work everyday until this problem is solved. I wonder how long his boss will tolerate that.
Tuesday, September 04, 2007
I have jumped the shark..
I have a minivan... a Dodge Grand Caravan. 2007 - we got a great deal on it. I can separate the boys now and they sit far enough back that they can't kick my seat. I am not looking forward to the payments or the car tax, but this vehicle will see Jacob into middle school - as long as no one else hits me.
I am a minivan driving mom. I have joined a sorority of millions. Eeek. I'll try to post pics tomorrow.
Jimmy had his first day of school today. The teacher reported that they spent the day getting to know each other. Nothing else remarkable to say... except he read me a Mo Willem book. I turned the page and he read. It was so neat.
I am a minivan driving mom. I have joined a sorority of millions. Eeek. I'll try to post pics tomorrow.
Jimmy had his first day of school today. The teacher reported that they spent the day getting to know each other. Nothing else remarkable to say... except he read me a Mo Willem book. I turned the page and he read. It was so neat.
Saturday, September 01, 2007
Catching up...
I haven't blogged much this week, with the accident and work...
Last Sunday, my BFF T took me to the Indigo Girls. It was a great show and just fun to hang out with her. She only lives an hour away and I am embarrassed that I never seem to find the time to go and see her. Actually, going to her house is one of the few relaxing outings I can possibly make. She has three kids and has known Jimmy since the beginning, so I never have to explain. That means a lot to me. I respect her, her intellect, and her wit. Okay, maybe she is a little bit of a smart ass, but that's not a bad thing. Her youngest starts kindergarten on Tuesday. I can't believe so much time has passed...
We have started the car shopping process. I test drove two cars today. We are going to shop tomorrow while my mom is here to watch the boys and again on Monday if we have to. I hope to have the rental back by Tuesday, rolling into the new school year in a new ride.
Last Sunday, my BFF T took me to the Indigo Girls. It was a great show and just fun to hang out with her. She only lives an hour away and I am embarrassed that I never seem to find the time to go and see her. Actually, going to her house is one of the few relaxing outings I can possibly make. She has three kids and has known Jimmy since the beginning, so I never have to explain. That means a lot to me. I respect her, her intellect, and her wit. Okay, maybe she is a little bit of a smart ass, but that's not a bad thing. Her youngest starts kindergarten on Tuesday. I can't believe so much time has passed...
We have started the car shopping process. I test drove two cars today. We are going to shop tomorrow while my mom is here to watch the boys and again on Monday if we have to. I hope to have the rental back by Tuesday, rolling into the new school year in a new ride.
I am such a sap...
I just watched a few minute of Titanic. You know, towards the end, as the boat was sinking. I couldn't bear to watch it. It's a movie, you know.
Thursday, August 30, 2007
Meeting this morning...
I am scheduled to meet Jimmy's new teacher this morning at an early meeting. The timing is horrible as I have so much going on at my school, especially trying to ready a new library for Tuesday. Hopefully it will be brief. I just want everyone to meet everyone else before the first day. I know he has already met the teacher and I have been told they interact well together. Right now, I am debating dragging him along to see for myself, but the reality is that I am trying to foster communication between the adults. Your non-verbal child is never going to tell me how is day is, so I need to feel like I am informed. I don't want another incident like the Rifton Chair.
Monday, August 27, 2007
Lots of stress...
I hate bad drivers, insurance companies, and car salesmen, in that order.
Jimmy had a huge meltdown tonight. I haven't even started the new medication with all of the added car drama, but I am concerned. He didn't want to be in our bedroom, didn't want to be his, cried for a good 40 minutes. I wish I understood what plagued him sometimes.
We have doctor's appointments Wednesday afternoon and I have a transition meeting with the new teachers and the therapist early Thursday morning for Jimmy. I had to ask for it, but it really should be standard. Yes, they have active construction going on and had to cancel "Meet the Teacher" night for parking concerns. But what parent in their right mind would send their non-verbal child to a teacher they have never met? I just can't.
Jimmy had a huge meltdown tonight. I haven't even started the new medication with all of the added car drama, but I am concerned. He didn't want to be in our bedroom, didn't want to be his, cried for a good 40 minutes. I wish I understood what plagued him sometimes.
We have doctor's appointments Wednesday afternoon and I have a transition meeting with the new teachers and the therapist early Thursday morning for Jimmy. I had to ask for it, but it really should be standard. Yes, they have active construction going on and had to cancel "Meet the Teacher" night for parking concerns. But what parent in their right mind would send their non-verbal child to a teacher they have never met? I just can't.
Sunday, August 26, 2007
The death of my car...
It is with great sadness that I announce the death of my 2001 Ford Focus wagon. It was taken from us prematurely by a person who failed to slow for stopped traffic. This is the second time in a month that we have been rear ending in stopped traffic by someone who seemed to be talking on a cell phone at the time of impact. The first one was a $550 repair bill for a slow speed impact in Jim's car when we came back from Texas. This impact was not at a slow speed from what Jim told me. In this case, the driver was cited by Fairfax County Police. My car was pushed into the vehicle in front of it, so there is front and rear damage as well as airbag deployment. I think the bill from this will more than likely total me out. Jim and Jacob were on their way to meet Jim Sr. for a train show at the Dulles Expo. As you can tell from the photo, Jim was hurt - he has a burn from the airbag deployment as well as a sore back and neck. Jacob seems okay, but he is sore as well. He was scared crapless when the airbag deployed. Both went to the emergency room and both will be going to the doctor again this week. It could have been so much worse, though, but it makes me sick that they hurt and had to go through something like this.
Friday, August 24, 2007
Okay, okay
Yes, I am still alive. I have been overwhelmed with life and work, especially some things that are going on on-the-job. But I am still here.
We have a nice visit on the Hill with one of Congressman Wolf's LAs. She knew very little about autism, so for an hour I shared with her my experiences with Jimmy. We had to keep off the Mr. Wolf's desk, so eventually we let him watch TV. He had a very nice flat screen in his office, where Jimmy watched Sagwa and Barney. I asked her several questions about the Combating Autism Act and the money from it. I hope she tracks down an answer, those I know that the wheels on the Hill grind very slowly. It was gratifying to just get time with someone like that.
I couldn't get him not to squint, but at least he looked at the camera.
We have our rescheduled doctor's appointment today for Jimmy. I got a note in the mail confirming the appointment for Rockville. Since I was told that it was definitely Fairfax, I was concerned. So I called the doctor's office. She breathlessly called back to tell me that there was a glitch and that all of the doctor's patients were scheduled into Rockville by mistake and it was indeed Fairfax. I was the only person to pick up on it, so she had to now call all his patients to clarify. My good deed for the day. Apparently, however, Children's Hospital's office manager is Howdy Doody. I have not been in a single department there where the office wasn't a mess.
We have a nice visit on the Hill with one of Congressman Wolf's LAs. She knew very little about autism, so for an hour I shared with her my experiences with Jimmy. We had to keep off the Mr. Wolf's desk, so eventually we let him watch TV. He had a very nice flat screen in his office, where Jimmy watched Sagwa and Barney. I asked her several questions about the Combating Autism Act and the money from it. I hope she tracks down an answer, those I know that the wheels on the Hill grind very slowly. It was gratifying to just get time with someone like that.
I couldn't get him not to squint, but at least he looked at the camera.
We have our rescheduled doctor's appointment today for Jimmy. I got a note in the mail confirming the appointment for Rockville. Since I was told that it was definitely Fairfax, I was concerned. So I called the doctor's office. She breathlessly called back to tell me that there was a glitch and that all of the doctor's patients were scheduled into Rockville by mistake and it was indeed Fairfax. I was the only person to pick up on it, so she had to now call all his patients to clarify. My good deed for the day. Apparently, however, Children's Hospital's office manager is Howdy Doody. I have not been in a single department there where the office wasn't a mess.
Wednesday, August 22, 2007
Watch this space...
I owe you a post. I have been so busy with life and work, I haven't gotten a chance to do it. I promise later tonight.
Friday, August 17, 2007
Thursday, August 16, 2007
More Sesame Place pics...
Dancing with SuperGrover...
What can I say... Jacob likes to boogie!!!
Zoe!!!!
We love Zoe!
An interesting article about IQ tests...
...and autistics. Of particular interest to me as I have to get Jimmy tested to get him on the list for DD Waivers.
Mr. Kirkland Goes to Washington
Jimmy and I are taking a little trip in the AM to Congressman Wolf's office to meet his new healthcare staffer and talk about autism. Pics tomorrow...
Wednesday, August 15, 2007
Mandy Moore covers Rihanna
I have a mild cover song obsession, so when I tripped across this, I couldn't resist...
Cookie Monster Gallery
Cookie Monster is worthy of his own post...
As I said in an earlier post, he has a Cookie Monster t-shirt. He still "talks" about it - meaning he smiles and says Cookie Monster repeatedly, so we talk about the day.
Thanks Matt.
A few Sesame Place photos!!!!
Jacob with Elmo...
Jacob using the ropes to pull himself up...
Hi from Elmo!
Jimmy (green swim trunks) sliding down...
Monday, August 13, 2007
Wow!!!! Back home, back to work, back to the world...
First off, to finish up the vacation stories. When we returned to Sesame Place on Sunday, I went back to the Welcome Center to get Jimmy's wristband. When I arrived there, I gave the woman working the desk Jimmy's name. She told me she had seen my blog... she was Zoe's mom. We talked for a few minutes - now we know why her daughter was so wonderful and sweet! Clearly genetics! As souveniers, I bought a little stuffed Zoe of my office - I was really touched by the whole experience of meeting Heather (if you are reading, I would love to keep in touch!!!) and I got Jimmy a Cookie Monster shirt. He loves it. We had a wonderful day - we left about 2pm and swung out to Hershey to see Chocolate World. It had been our intention to go to the park for a few hours during their twilight prices, but it was really more than I could do. But the tour was fun!
We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.
But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.
The photos are on the upstairs computer, so I will post those later.
We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.
But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.
The photos are on the upstairs computer, so I will post those later.
Saturday, August 11, 2007
Day 2 of Sesame Place and a side trip to Chocolate World...
More on this tomorrow, as I have to get some overly excited boys down for the night. Suffices to say that today was amazing as well!!!
Friday, August 10, 2007
Greetings from Sesame Place... and special greetings to Zoe and Cookie
I will update with a ton of photos when I get home, but we are at Sesame Place, our last blast before I head back to school to ready the new library on Monday. We went all out this time, including the Dine With Me character lunch for the boys. They loved it, especially Jimmy. But that would be an understatement of what really happened...
The moment we walked in, Jimmy said "Cookie Monster" in his tiny little voice. We knew that we had to be sure that Jimmy got a minute with Cookie. The characters all floated around the room - it was a great experience. At times Jimmy found it a little overwhelming, but he really enjoyed his visits with Ernie and Zoe. Actually, Zoe hung out for a while. I always tell the characters about Jimmy - it often makes a difference in their approach to him - and Zoe took a lot of time. I was babbling on about him and Zoe pointed at me and then made muscles with her arms. "Your strong." I was so touched. So I told her about him and my other kids at my school and she actually pointed at herself, crossing her arms, and then point at me. "I love you." Eventually she said goodbye to the boys and moved on, but Zoe was just so sweet.
Jimmy told the character handler of Jimmy's desire to see Cookie Monster - he had to, because Cookie had been hanging out on the other side of the room. Right after he finished his song, he cruised over to our table. Up until this point, Jimmy greeted the characters warily at first. When Cookie Monster arrives, he smiled a bit. He was excited to see him. Cookie hung out for a few minutes too. We told him about Jimmy saying his name when he arrived, that Jimmy loved Cookie Monster on Sesame Street, even that the first time I realized Jimmy understood spoken language was when Jimmy laughed at one of Cookie Monsters jokes on the show.
It was such a great experience, I could not have imagined it getting any better. But it did. As we were walking over to the big play area to let them run around, three college aged kids were coming my direction. This very petite and pretty girl walked up to me and started with "You don't know me..." It was Zoe out of costume. She told me that I was amazing and just kind of told me what she was trying to express to me when we were at the event, when she couldn't talk. Then the guy with her spoke - he was Cookie Monster. He said was very touched that Jimmy was so pleased to see him. I am just sorry that Jimmy wasn't with me. He had gone ahead to the playground. I told them about the blog, so I am hoping they will visit. I don't think I told them enough how amazing they made our day.
Tuesday, August 07, 2007
Two pics of Jimmy that are sort of amazing...
We flew American Eagle from Nashville to National on a small jet. There were two seats on one side of the aisle and one on the other. It was a configuration that simply wasn't going to work for takeoff. Fortunately, there was an amazing compassionate family who let Jacob sit next to them during takeoff so I could focus on getting Jimmy settled. Actually, he did amazing well during take off... no meltdowns or anything. We were seated however in the back of the aircraft. The noise was so unbearable, he went half the flight with his fingers in his ears.
Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.
He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.
He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.
I am so proud of my boy.
Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.
He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.
He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.
I am so proud of my boy.
We are back...
After Jimmy's recovering and another day in the pool at my dad's, we are back from Texas. We made our arrival in dramatic fashion as our bags went to Dulles, we went to National, and then we were rear ended on 28 on our way home. Don't worry, we are all okay. Such drama for six days away. I hope our weekend trip away is less eventful.
So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...
Jacob eating ice cream at Braum's on Sunday.
My dad's Braum's selection.
To my left...
and my right on the flight from DFW to Nashville on the way home...
So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...
Jacob eating ice cream at Braum's on Sunday.
My dad's Braum's selection.
To my left...
and my right on the flight from DFW to Nashville on the way home...
Saturday, August 04, 2007
Pimp My Ride
Best. Cart. Ever. For a dollar, your kids can ride around in a character themed cart that plays videos. Why don't they have these in our Wal-marts at home?
CareNow cares not...
I took Jimmy to see a doctor today at an urgent care place called CareNow in Denton. It is a misnomer.
When I checked in, I let the nurse know that Jimmy was autistic and could be difficult in addition to all his other symptoms - fever, throwing up, etc... When we saw the doctor, I asked if he had gotten the heads up. He said yes, but that "this is an urgent care facility and we don't have time..." and then trailed off. We don't have time for kids like yours. Patients with special needs. He didn't finish, but you can tell from the start that it was going nowhere good. Those words should never have been formed in his brain. I told him until developmental pediatricians open up their own urgent care facilities, that kids like my son would need medical care when they are sick and come.
I gutted it through because my kid was sick and needed a doctor, but there was so much more I wanted to say. I was angry, insulted, crushed. I felt like he didn't want to take care of my son because he wasn't normal. And my son was sick. Like he didn't deserve care. I know more than likely, what he was thinking was that I have to crank through these patients, I don't have time for checking this combative kid out. But that's not what I heard and it certainly doesn't excuse his rudeness and thoughtlessness.
A doctor doesn't get to pick his patients. Certainly not in an urgent center. Unless CareNow has a policy of not providing medical care for people with disabilities. I didn't see one posted on the door. I filled out and mailed a comment card after the appointment, but I will be writing and calling the home office this week as well (apparently this place is a chain.) I will see to it that no CareNow patient with a disability is treated so rudely again.
Jimmy has strep. They gave him a shot of antibiotics. I am hoping he will be fever free in the morning.
No trip to Texas is complete...
...without a visit to the ER. That's where Jimmy will be headed in the morning. He is still feverish. I am betting ears - it seems to happen every time we fly.
Friday, August 03, 2007
Day three
Jimmy is still sick. He had a brief burst of energy this morning and went back into the pool, but he is asleep as is Jacob, who has had a busy couple of days playing in the pool with his cousin Katie and with the various animals around here.
Thursday, August 02, 2007
Never a dull moment...
Jimmy has thrown up four times and Sarah picked up lice from a playmate, so we are treating his new BFF Jacob right now. I just need to pick up Jimmy's bug or Sarah's bugs to make my trip complete.
Greetings from my vacation.
Greetings from my vacation.
Jimmy makes the news again...
Check it out... the reporter that took over for Alex Granados (who got a richly deserved promotion) is Kipp Hanley. He wrote a very nice article about Walmart's new toilet.
Greetings from Denton, Texas
I wrote this on the way here yesterday, so I thought I would post it and then give the context...
"Well, that was a little slice of heaven! We tried to get on a 6:05am
flight to Dallas and didn't make it off stand by. With prospects
bleak over there,we headed to National. Our flight turned doubtful
before we ever arrived. So now we are on a flight to Nashville."
Since my niece was returning to Texas, I decided to go with her. An extra set of hands would be helpful, right? They were, but, wow, what a day!
I got a nice night's sleep of less than 3 hours, before setting off to the airport. We arrived at 4:30 for a 6:05 flight. Since we were flying standby, we knew there was a chance that we wouldn't make it. We didn't. Since prospects were bleak for the rest of the day at Dulles, we got listed for a flight at National. By the time I spend $51 for the four of us to hop the SuperShuttle and we arrived, that flight was not promising either. My brother-in-law told us there were 20 seats available to Nashville and 24 from Nashville to DFW, we ran to make a Music City flight. We finally arrived here at about 1pm. My stepmom came home for her quilting group so I could take a nap. I feel better today.
Of course, there is more to the story, but it will have to wait. I think the kids should be waking up shortly. Speaking of sleep, I do have a photo to share from the flight - the last five minutes with Jacob. That was the only sleep achieved by any of us during the flight.
"Well, that was a little slice of heaven! We tried to get on a 6:05am
flight to Dallas and didn't make it off stand by. With prospects
bleak over there,we headed to National. Our flight turned doubtful
before we ever arrived. So now we are on a flight to Nashville."
Since my niece was returning to Texas, I decided to go with her. An extra set of hands would be helpful, right? They were, but, wow, what a day!
I got a nice night's sleep of less than 3 hours, before setting off to the airport. We arrived at 4:30 for a 6:05 flight. Since we were flying standby, we knew there was a chance that we wouldn't make it. We didn't. Since prospects were bleak for the rest of the day at Dulles, we got listed for a flight at National. By the time I spend $51 for the four of us to hop the SuperShuttle and we arrived, that flight was not promising either. My brother-in-law told us there were 20 seats available to Nashville and 24 from Nashville to DFW, we ran to make a Music City flight. We finally arrived here at about 1pm. My stepmom came home for her quilting group so I could take a nap. I feel better today.
Of course, there is more to the story, but it will have to wait. I think the kids should be waking up shortly. Speaking of sleep, I do have a photo to share from the flight - the last five minutes with Jacob. That was the only sleep achieved by any of us during the flight.
Monday, July 30, 2007
Photos from the last few days
Jimmy eating cake at his Parks and Rec birthday party with his therapist...
Jacob out to breakfast with me on Friday...
Jimmy just before he fell asleep on the couch. If he looks a like dopey, it's because this was after he took his sedative...
Buster, also referred to as Miss Kitty, keep watch over the now sleeping lump of a boy...
Wednesday, July 25, 2007
Happy Sixth Birthday!!!!
I can't believe it has been six years! I remember waking up after crashing from exhausting post C-section and looking at him in the bassinet next to me. I beat myself up over missing the first five hours of his life. Little did I know how much I would need the extra sleep.
After I was done teaching summer school today, I picked up a sheet cake and took it to his Extended Care program at Costello Park. His therapist brought him down. Forty kids sang "Happy Birthday" to him. It was fantastic! I love the kid so much, my heart is just ready to burst most of the time. Maybe because he doesn't talk back, I don't feel as constantly frustrated with him. Maybe it's because my heart is somehow even softer to him, simply because of the need I have to protect him, that he doesn't function in the world completely on his own. I just love him to pieces. I have since the first day - you know, the one where I found out I was pregnant - and I haven't stopped. Yeah, the ride has been bumpy, but he is amazing!
Tuesday, July 24, 2007
Sunday, July 15, 2007
Running through the mall...
Screaming Jacob's name...
Went to the mall with my mom and Jimmy's therapist for a community outing. While we were attempting to get Jimmy to use the bathroom, my mom sat outside with Jacob. It's a small bathroom - he got out in front of her and she was blocked in by his stroller. He took off at a run and went after him. The chase began on the lower level of the mall and ended on the upper level on the opposite side of it. And it didn't end with his capture either... my mom called me to tell me that she had lost sight of him and he was gone. I ran to the information desk, requested a security guard and took off running in the direction where he had last been seen.
I have never felt so helpless as I did running through the mall, yelling the name of my missing child. I think it was true terror. Apparently someone caught and returned him to my mother. She actually spanked him for his trouble. He turned and smiled at her. When she found me with him in tow, I started sobbing and yelling at him. Only then did he realize that he was in big trouble. It was the worst experience of my life, by far...
Needless to say, he isn't going to the mall again any time soon.
Went to the mall with my mom and Jimmy's therapist for a community outing. While we were attempting to get Jimmy to use the bathroom, my mom sat outside with Jacob. It's a small bathroom - he got out in front of her and she was blocked in by his stroller. He took off at a run and went after him. The chase began on the lower level of the mall and ended on the upper level on the opposite side of it. And it didn't end with his capture either... my mom called me to tell me that she had lost sight of him and he was gone. I ran to the information desk, requested a security guard and took off running in the direction where he had last been seen.
I have never felt so helpless as I did running through the mall, yelling the name of my missing child. I think it was true terror. Apparently someone caught and returned him to my mother. She actually spanked him for his trouble. He turned and smiled at her. When she found me with him in tow, I started sobbing and yelling at him. Only then did he realize that he was in big trouble. It was the worst experience of my life, by far...
Needless to say, he isn't going to the mall again any time soon.
Saturday, July 14, 2007
The loveable, laughable logic of an autistic boy
When I was at Bloom the other day, I got roped into buying more than I needed. The most stupid expenditure was Spiderman popsicles. Jacob had one and I put them in the freezer. When we got home from going to Potomac Mills with Diana today, Jimmy took them out and to the top bunk of his bed, where he left them to melt. All because they were Spiderman and he liked them. I threw them away and Jacob helped me clean up the mess. A few hours later I go to take the trash out. I realize that the wet, melting box isn't in there. He took them back to his bed again. Needless to say, the sheets are getting done.
Potomac Mills was my compromise on the whole zoo thing. I just figured we would rent strollers. They were out everywhere in the mall. I had to hoof it over to the Old Navy entrance just to find them. Just getting to the information desk, I had Jimmy going limp on me because he wasn't to see the battery powered dog at KB Toys. Jacob took off on Diana at a full sprint and I had to chase him around a shoe store, where he relished hiding from me. Got a lot of laughs from the other customers. I don't think they realized how close I was to losing my shiznit.
Speaking of other customers, next time I put Jimmy in a mall stroller, it will be with a t-shirt saying "I am autistic. What's your excuse?" People are just too damn judgmental.
My house is thrashed, but at this point, it can wait until the morning. I am going to my bed. I think the last one is finally asleep. Peace at last.
Potomac Mills was my compromise on the whole zoo thing. I just figured we would rent strollers. They were out everywhere in the mall. I had to hoof it over to the Old Navy entrance just to find them. Just getting to the information desk, I had Jimmy going limp on me because he wasn't to see the battery powered dog at KB Toys. Jacob took off on Diana at a full sprint and I had to chase him around a shoe store, where he relished hiding from me. Got a lot of laughs from the other customers. I don't think they realized how close I was to losing my shiznit.
Speaking of other customers, next time I put Jimmy in a mall stroller, it will be with a t-shirt saying "I am autistic. What's your excuse?" People are just too damn judgmental.
My house is thrashed, but at this point, it can wait until the morning. I am going to my bed. I think the last one is finally asleep. Peace at last.
Thursday, July 12, 2007
My weekend choice...
I am going to Toys R Us to buy this...
I can't figure out how to make a solo trip to the zoo work, so I am getting a pool, pulling up a lawnchair, and reading while the kids play. It's the best I can come up with. Fortunately my mom is going to spring me on Sunday to go to Fair Oaks to shop. Jimmy's birthday is coming, after all...
Sadly, I think this is what I will ultimately need...
The Axiom 2 Special Needs Stroller... only about $1100. Maybe I should have a bake sale...
Does it really have to be such a big production?
So, I am still toying around with the idea of taking the boys to the zoo on Saturday. It's not something I can do, however, without benefit of a stroller. The boys have outgrown theirs. It makes no sense to buy a brand new jogging stroller for two - it would be $200 and, weight wise, would last me only a year. So I have been surfing CraigsList. There is one for $100 in Fairfax and another for $50 in Maryland. I would be interested in the $50 if it were here.
The problem isn't just the weight. Jimmy is tall enough that he can put his feet down and offer up a good fight if he doesn't want move from where he is. Always a problem at the mall with KB Toys. A bigger problem going from enclosure to enclosure at the zoo. Can't lure him away from the tigers with "Let's go see the elephants." He doesn't get it and will just want to stay with the tiger.
Being alone with two kids is essentially house arrest. I guess I should suck it up and get a wading pool for the weekend and have some fun.
The problem isn't just the weight. Jimmy is tall enough that he can put his feet down and offer up a good fight if he doesn't want move from where he is. Always a problem at the mall with KB Toys. A bigger problem going from enclosure to enclosure at the zoo. Can't lure him away from the tigers with "Let's go see the elephants." He doesn't get it and will just want to stay with the tiger.
Being alone with two kids is essentially house arrest. I guess I should suck it up and get a wading pool for the weekend and have some fun.
Jimmy's up..
And so I am... he got me up at about 3:45 a.m. Not a big fan of my son at this moment. The clonidine puts him to sleep, but fairly often doesn't keep him there. At least we changed the locks so he can't go out the door. That peace of mind still isn't enough to let me return to bed. So here I am.
I am trying to screw up the nerve to take the boys into the city this weekend. I want to take them to the zoo. I am trying to figure out how to manage it on my own. They have outgrown the double umbrella stroller. I am toying with the notion of buying a double jogging stroller, if it will support 100 lbs between the two of them. That would give me a year. Neither boy has the self restraint to allow me to let both walk alone on major outings. And I hate being cooped up at home.
I am trying to screw up the nerve to take the boys into the city this weekend. I want to take them to the zoo. I am trying to figure out how to manage it on my own. They have outgrown the double umbrella stroller. I am toying with the notion of buying a double jogging stroller, if it will support 100 lbs between the two of them. That would give me a year. Neither boy has the self restraint to allow me to let both walk alone on major outings. And I hate being cooped up at home.
Tuesday, July 10, 2007
Monday, July 09, 2007
Jimmy Starts Summer School
After many different idirations of schedules and programs, Jimmy finally started summer school today. Three weeks at the school and then three weeks in home hours. That's on top of the 12 hours a week of therapy he gets from the school system and county. Another schedule to juggle. At least they are doing something different this year - Applied Verbal Behavior - saying "yes" or "no" instead of scripting both, following oral direction, etc... These things are helpful, but there is a lot to our schedule at the moment.
Added to this are two more time committments for me - an online class for my licensure and rejoining the gym. There is so much else stressing me out at the moment. I think I have added too much.
Added to this are two more time committments for me - an online class for my licensure and rejoining the gym. There is so much else stressing me out at the moment. I think I have added too much.
Monday Morning
I am exhausted and here I am, up for summer school. Hopefully this won't feel so pointless when the extra money appears on my paycheck. I could use the cash right now.
Saturday, July 07, 2007
August 13th
Well, we have sleep medication again. Of course, when I filled the prescription, I found out that Anthem forgot to enter Jimmy's name for coverage. And thus, the post-Kaiser era begins.
I did manage to get an appointment for Jimmy with his developmental pediatrician. He doesn't have anything in Fairfax for months, so I am hoofing it to Rockville to get him seen. I think we are going the ADHD medication route again. It is needed badly.
Week three of summer school begins Monday. I love the kids, we are all having fun, and I feel like they are learning. Jimmy's therapy goes on without his therapist of a year - she had emergency surgery and is out of commission - but he likes the woman delivering services, so it isn't a huge setback.
I added a link to my missing BFF. I haven't made the time to see her as I should - she is out in Front Royal. I miss her (and my other friends - I haven't seen anyone in awhile.) I will get out there soon. What up, T? :)
That's the update, for now.
I did manage to get an appointment for Jimmy with his developmental pediatrician. He doesn't have anything in Fairfax for months, so I am hoofing it to Rockville to get him seen. I think we are going the ADHD medication route again. It is needed badly.
Week three of summer school begins Monday. I love the kids, we are all having fun, and I feel like they are learning. Jimmy's therapy goes on without his therapist of a year - she had emergency surgery and is out of commission - but he likes the woman delivering services, so it isn't a huge setback.
I added a link to my missing BFF. I haven't made the time to see her as I should - she is out in Front Royal. I miss her (and my other friends - I haven't seen anyone in awhile.) I will get out there soon. What up, T? :)
That's the update, for now.
Thursday, July 05, 2007
Fun with Dora
Kids show are so incredibly annoying that anytime YouTube has fun with them (no matter how foul), I have to share....
Wednesday, July 04, 2007
Happy Fourth!!!
I am typing this while Jim is outside with Jacob. Fireworks were never Jimmy's scene. He has had a pretty rough day - but that, I mean we have had a rough day. A few, actually. I finally switched the boys of Kaiser Permenente as of July 1. That was such a bad scene, with all the hoops to jump through - the referrals, the waits, the lack of coverage, driving to Woodbridge or Falls Church for an emergency appointment. A huge pain. HMOs are great if there is nothing wrong with you. Obviously, not the case here.
We ran out of Jimmy's Catapres three days ago - Jimmy takes it to sleep. Without it, he hasn't. So Jacob can sleep, he has been bunking with us, but I have literally been awakened by Jimmy jumping on my ribs at 2 a.m. Tomorrow was the soonest we could get in with his new pediatrican, so we go in the afternoon. I am hoping the doctor will just write the script. If he is willing to writing something for the hyperactivity, it would such a gift right now!
That was one of the biggest problems with Kaiser - they were very hands off when it came to the autism stuff. The doctor wasn't able to perscribe anything to treat the symptoms/behavioral elements of autism. We had to go through the developmental pediatrican, who is impossible to get a returned call or e-mail from. He must be on Mars for vacation, because he hasn't responded at all this week - I was trying to get this filled before the switch, so there wouldn't be any interruption in his medication. Didn't work - Kaiser didn't help, Dr. Conlon disappeared. I am just exhausted and miserable at this point.
I can see the fireworks from my window. I have always loved them. At least I used to... it's a little pleasure that I feel like I have lost because I can't share them with Jimmy. They are just so loud for him - it's terrifying. I know it is corny, but it makes me sad that we can't be out there as a family, with everyone else.
Hey, at least he loves Christmas. We still have that.
We ran out of Jimmy's Catapres three days ago - Jimmy takes it to sleep. Without it, he hasn't. So Jacob can sleep, he has been bunking with us, but I have literally been awakened by Jimmy jumping on my ribs at 2 a.m. Tomorrow was the soonest we could get in with his new pediatrican, so we go in the afternoon. I am hoping the doctor will just write the script. If he is willing to writing something for the hyperactivity, it would such a gift right now!
That was one of the biggest problems with Kaiser - they were very hands off when it came to the autism stuff. The doctor wasn't able to perscribe anything to treat the symptoms/behavioral elements of autism. We had to go through the developmental pediatrican, who is impossible to get a returned call or e-mail from. He must be on Mars for vacation, because he hasn't responded at all this week - I was trying to get this filled before the switch, so there wouldn't be any interruption in his medication. Didn't work - Kaiser didn't help, Dr. Conlon disappeared. I am just exhausted and miserable at this point.
I can see the fireworks from my window. I have always loved them. At least I used to... it's a little pleasure that I feel like I have lost because I can't share them with Jimmy. They are just so loud for him - it's terrifying. I know it is corny, but it makes me sad that we can't be out there as a family, with everyone else.
Hey, at least he loves Christmas. We still have that.
Saturday, June 30, 2007
Senate Fully Funds the Combating Autism Act
From the ASA e-newsletter... I apologize for the lack of link.
Senate Fully Funds the Combating Autism Act
The Senate Labor, Health and Human Services and Education Appropriations Committee approved its version of the FY 2008 spending bill, including a 52 percent increase for autism-related activities at the CDC and Health and Resources Services Administration. This is the full amount authorized for these programs under the Combating Autism Act.
Specifically, the bill provides $37 million for the Neurodevelopmental Disabilities Residency Program and the Developmental-Behavioral Pediatrics Training Program, which both provide long-term, graduate-level interdisciplinary training, as well as services and care for infants, children and adolescents with disabilities. The Committee also provided $16.5 million for CDC’s autism programs, which include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. The House also provided $16.5 million for these programs.
Because funding levels for autism are different in the House and Senate bills, they will need to be worked out in a conference committee. ASA will be working diligently to ensure that autism activities receive the resources they need.
Other Critical Programs Funded
The Senate Labor, Health and Human Services and Education Appropriations bill also included increases for other programs of interest to the autism community. The legislation provided $11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007, and $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.
Programs under the Developmental Disabilities Act also saw a significant increase of 11 percent in the FY 2008 bill. The legislation included $2 million in new funding to support a National Clearinghouse and Technical Assistance Center to promote leadership by families of children with disabilities in the design and improvement of family support services.
Unfortunately, neither the House nor the Senate included funding for the newly authorized Lifespan Respite Care Act. This is a great disappointment for the disability community, as the legislation has broad bipartisan support. While funding for this year is now unlikely, ASA will continue to work with its allies in the disability community to see that this important program receives the funding it needs.
Senate Fully Funds the Combating Autism Act
The Senate Labor, Health and Human Services and Education Appropriations Committee approved its version of the FY 2008 spending bill, including a 52 percent increase for autism-related activities at the CDC and Health and Resources Services Administration. This is the full amount authorized for these programs under the Combating Autism Act.
Specifically, the bill provides $37 million for the Neurodevelopmental Disabilities Residency Program and the Developmental-Behavioral Pediatrics Training Program, which both provide long-term, graduate-level interdisciplinary training, as well as services and care for infants, children and adolescents with disabilities. The Committee also provided $16.5 million for CDC’s autism programs, which include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. The House also provided $16.5 million for these programs.
Because funding levels for autism are different in the House and Senate bills, they will need to be worked out in a conference committee. ASA will be working diligently to ensure that autism activities receive the resources they need.
Other Critical Programs Funded
The Senate Labor, Health and Human Services and Education Appropriations bill also included increases for other programs of interest to the autism community. The legislation provided $11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007, and $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.
Programs under the Developmental Disabilities Act also saw a significant increase of 11 percent in the FY 2008 bill. The legislation included $2 million in new funding to support a National Clearinghouse and Technical Assistance Center to promote leadership by families of children with disabilities in the design and improvement of family support services.
Unfortunately, neither the House nor the Senate included funding for the newly authorized Lifespan Respite Care Act. This is a great disappointment for the disability community, as the legislation has broad bipartisan support. While funding for this year is now unlikely, ASA will continue to work with its allies in the disability community to see that this important program receives the funding it needs.
Friday, June 29, 2007
Changing the World...
One bathroom at a time...
This is a funny story. A few weeks ago, the first week Signal Hill's pool was open, my mom and I took the boys there and then over to Walmart for McDonalds and to shop. Jimmy had an accident in the aisle. This was actually the second time it happened. He was terrified of the bathroom - it had one of those sensor devices that flushes a very powerful and loud rush of water when triggered. Like I said, it wasn't the first time it happened, but I was so frustrated, I actually said something to the manager on duty, a guy named Roy. I asked him if they would consider installing a more traditional, less noisy flushing toilet in the family bathroom for Jimmy. He isn't the first autistic child to be scared of a public toilet. Heck, "normal" kids are scared of these things. It's not an uncommon complaint. He said he would talk to the people from corporate. I followed up with him a few days later and he said it was a nonstarter for sanitary reasons. Not like it is sanitary to have my kid peeing in the middle of the store. I decided to press on, figuring it was an ADA issue, at least in my mind, for my child. I didn't know where to begin, but I intended to follow on with it over the summer.
I was in the store again yesterday and approached someone working on the renovation. This woman happened to be from the corporate office. I explained my concerns to her and she gave me the number of the construction manager overseeing the renovation in Arkansas. His name was Cliff. I was surprised that he was very interested and sympathetic to what I had to say. He said he would look into it and probably get back to me after the Fourth of July. Instead, he called today. He tossed it around corporate and basically said that I needed to go back to the store and talk to Tye, the store manager, because he had to be initiated at that level. I cruised back into Walmart during the lunch hour today. I met Tye, who had not only spoken to Cliff but the woman I had spoken to the day before... he had already ordered the toilet. It should arrive in about two weeks and will replace the DeathFlush. I was stunned. I figured it would be this big battle, but they embraced my concerns immediately. I am completely blown away.
If every battle was so easy. Thank you Walmart, especially Cliff and Tye. I am just amazed.
This is a funny story. A few weeks ago, the first week Signal Hill's pool was open, my mom and I took the boys there and then over to Walmart for McDonalds and to shop. Jimmy had an accident in the aisle. This was actually the second time it happened. He was terrified of the bathroom - it had one of those sensor devices that flushes a very powerful and loud rush of water when triggered. Like I said, it wasn't the first time it happened, but I was so frustrated, I actually said something to the manager on duty, a guy named Roy. I asked him if they would consider installing a more traditional, less noisy flushing toilet in the family bathroom for Jimmy. He isn't the first autistic child to be scared of a public toilet. Heck, "normal" kids are scared of these things. It's not an uncommon complaint. He said he would talk to the people from corporate. I followed up with him a few days later and he said it was a nonstarter for sanitary reasons. Not like it is sanitary to have my kid peeing in the middle of the store. I decided to press on, figuring it was an ADA issue, at least in my mind, for my child. I didn't know where to begin, but I intended to follow on with it over the summer.
I was in the store again yesterday and approached someone working on the renovation. This woman happened to be from the corporate office. I explained my concerns to her and she gave me the number of the construction manager overseeing the renovation in Arkansas. His name was Cliff. I was surprised that he was very interested and sympathetic to what I had to say. He said he would look into it and probably get back to me after the Fourth of July. Instead, he called today. He tossed it around corporate and basically said that I needed to go back to the store and talk to Tye, the store manager, because he had to be initiated at that level. I cruised back into Walmart during the lunch hour today. I met Tye, who had not only spoken to Cliff but the woman I had spoken to the day before... he had already ordered the toilet. It should arrive in about two weeks and will replace the DeathFlush. I was stunned. I figured it would be this big battle, but they embraced my concerns immediately. I am completely blown away.
If every battle was so easy. Thank you Walmart, especially Cliff and Tye. I am just amazed.
Jimmy and Paris
Not Hilton. I cat sat for a friend last weekend and took Jimmy along. He made a friend.
Wednesday, June 27, 2007
Scientists eye an enzyme as target in fighting autism
Scientists eye an enzyme as target in fighting autism
Wed Jun 27, 9:11 AM ET
Associated Press
US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Wed Jun 27, 9:11 AM ET
Associated Press
US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Sunday, June 24, 2007
A little No Doubt to kick off the week
I have decided to let Gwen help relieve my stress. The band joined her on the last night of her solo tour for the encore. I love them!!!
The End...
Of a very long weekend. Hopefully this week will be a little less stressful. Then again, summer school starts... Who am I kidding?
Saturday, June 23, 2007
Enjoy the silence...
Before I found out about my summer school contract, I was afraid I would wind up with nothing, so I picked up a few shifts at the reference desk of my old employer. I am sitting here, working on lesson plans, enjoying the peace. It is really quiet. I forgot what quiet is like. Over the last year, I worked in a completely open library space in the middle of an elementary school. No quiet there. Certainly none at home. I almost expect someone to come through screaming, because that's what I am used to.
Christine has departed and I am left again with my kids. It's been a great week, but I can't wait to have Jacob back in daycare. Jimmy has another week in before summer school, so he is going to Parks and Rec for the mornings this week. Rosa will be around for him, so I have no worries about transition. Therapy kicks in earnest next week, so I will be home in the afternoon, doing lesson planning, packing, and painting. At least I hope too.
Christine has departed and I am left again with my kids. It's been a great week, but I can't wait to have Jacob back in daycare. Jimmy has another week in before summer school, so he is going to Parks and Rec for the mornings this week. Rosa will be around for him, so I have no worries about transition. Therapy kicks in earnest next week, so I will be home in the afternoon, doing lesson planning, packing, and painting. At least I hope too.
Thursday, June 21, 2007
Wednesday, June 20, 2007
First week of summer...
I have had both boys home with me. Christine, my niece, has been around to cover for me when I have meetings and stuff - she is doing a great job! We have taken them to the pool - Jimmy still won't slide, but he really likes the lazy river. His therapist came with us (session at the pool and McDonalds) and he started a quasi conversation with her about the three of us in the lazy river swimming and his recent trip to the bowling alley before school let out. It was "Mrs. Grizzard, Mr. Booty, Sonia, bowl, ball" - words strung together, not formally structured. What it represents is huge, though. We have started plotting a bedtime routine and the food plan will begin soon as well.
Jacob will start his new school on Monday. Childtime reduced the fee after my complaint, but Jacob now has his heart set on going to Cradle to Crayons. I have to let him try. Jimmy starts summer school the following week, so he will be at Parks and Rec with Rosa for next week. I enjoy the extra time with them, but it reminds me how much they are to handle. Hopefully it's better when they are older.
More later.
Jacob will start his new school on Monday. Childtime reduced the fee after my complaint, but Jacob now has his heart set on going to Cradle to Crayons. I have to let him try. Jimmy starts summer school the following week, so he will be at Parks and Rec with Rosa for next week. I enjoy the extra time with them, but it reminds me how much they are to handle. Hopefully it's better when they are older.
More later.
Friday, June 15, 2007
A long week
Where to begin... it was the last week of school this week, for both Jimmy and myself. We had FAPT on Monday. Services will continue through September 17th. We get 12 hours a week of in-home therapy, 2 hours a month of parent training and five hours of consult in summer school. It's great. Maybe the only thing I would ask for is a little more parent training. They will work on bedtime routine and the whole food selectivity thing over the summer. I will be around for most of the sessions, so I will have the opportunity to learn. I am really excited about that.
Jimmy had his school concert - Kindergarten's "Songs of Friendship." He sang a little, but mostly I was pleased he stood on the riser for the whole time. I know they were slipping him fruit snacks to reinforce for appropriate behavior. Whatever works. At the end of show, he actually winked at me. Or maybe it was a visual stim. I don't know, but it was very funny and cute! I am very proud of the progress he has made. Last year, he wouldn't have stood there at all. He would have been running around, stripping naked!
Of course, today was the last day of school. Jimmy has finished kindergarten. It scarely seems that it has been long enough to have a rising first grader. Actually, if he wasn't autistic, I wouldn't - I would never have sent him to school at five, as I think having a boy at the young end of the school cut off is detrimental for them socially and academically. But Jimmy is there, he is who he is, and he has done well. I love him (and Jacob too, of course) with more love than I could have possibly imagined for another living being. That's saying a lot - anyone who knows me knows that I love probably too deeply, too much in general. I can't love these boys enough.
Incidentially, it was also Jacob's last day of school as well. I made the difficult decision to pull him from Childtime. They have had many management changes over the past year. I have taken it in stride, even when mistake were made in the care of my own child. Things have improved of late - they have two new wonderful managers, along with some great new teachers. Jacob's teacher recently returned from disabilities from injuries sustained in a serious car accident. They were doing more with curriculum and really making progress in the center.
Ultimately, the corporate and regional managers made the unfortunate decision to add a summer surcharge of $25 a week for "curriculum enrichments." In my opinion, curriculum needs to be effectively offered, explained, and assessed before you can enrich it. Kindercare charged a flat $50 to cover their special summer programs for preschoolers. This would have totalled $250. In light of everything that has happened since August, I felt that it was poor form to nickel and dime us, so I pulled him. I took him back to Kindercare and a place called Cradle 2 Crayons. He said he wanted to go to the latter, so he starts the 25th. I don't feel great about yanking him, but I felt that I had no choice, that to stay was just allow myself as a parent to be exploited financially for no sensible reason.
My niece is coming to help me with them next week - I don't work a full schedule, so she will cover for my summer school meetings and trainings and such. When I am not busy, we will hang out. I am looking forward to it. I also have a shift at Mercer's reference desk next Saturday and ALA next Sunday. A busy but enjoyable week...
As for my last day of school... I generally don't post about my job. I would like to say that I have never been more challenged, more stressed, or worked harder at any job than I have at being an elementary librarian. I also have never found anything to be more professionally and personally rewarding. I love my job, I love my colleagues, and I love my students. As I said before, i generally love too deeply and too much. With kids, you just can't. I would also say that I have never felt more loved than I have in my school with the adults and children that I am blessed to work with everyday. I know understand what joy truly is - it's been their gift to me.
Jimmy had his school concert - Kindergarten's "Songs of Friendship." He sang a little, but mostly I was pleased he stood on the riser for the whole time. I know they were slipping him fruit snacks to reinforce for appropriate behavior. Whatever works. At the end of show, he actually winked at me. Or maybe it was a visual stim. I don't know, but it was very funny and cute! I am very proud of the progress he has made. Last year, he wouldn't have stood there at all. He would have been running around, stripping naked!
Of course, today was the last day of school. Jimmy has finished kindergarten. It scarely seems that it has been long enough to have a rising first grader. Actually, if he wasn't autistic, I wouldn't - I would never have sent him to school at five, as I think having a boy at the young end of the school cut off is detrimental for them socially and academically. But Jimmy is there, he is who he is, and he has done well. I love him (and Jacob too, of course) with more love than I could have possibly imagined for another living being. That's saying a lot - anyone who knows me knows that I love probably too deeply, too much in general. I can't love these boys enough.
Incidentially, it was also Jacob's last day of school as well. I made the difficult decision to pull him from Childtime. They have had many management changes over the past year. I have taken it in stride, even when mistake were made in the care of my own child. Things have improved of late - they have two new wonderful managers, along with some great new teachers. Jacob's teacher recently returned from disabilities from injuries sustained in a serious car accident. They were doing more with curriculum and really making progress in the center.
Ultimately, the corporate and regional managers made the unfortunate decision to add a summer surcharge of $25 a week for "curriculum enrichments." In my opinion, curriculum needs to be effectively offered, explained, and assessed before you can enrich it. Kindercare charged a flat $50 to cover their special summer programs for preschoolers. This would have totalled $250. In light of everything that has happened since August, I felt that it was poor form to nickel and dime us, so I pulled him. I took him back to Kindercare and a place called Cradle 2 Crayons. He said he wanted to go to the latter, so he starts the 25th. I don't feel great about yanking him, but I felt that I had no choice, that to stay was just allow myself as a parent to be exploited financially for no sensible reason.
My niece is coming to help me with them next week - I don't work a full schedule, so she will cover for my summer school meetings and trainings and such. When I am not busy, we will hang out. I am looking forward to it. I also have a shift at Mercer's reference desk next Saturday and ALA next Sunday. A busy but enjoyable week...
As for my last day of school... I generally don't post about my job. I would like to say that I have never been more challenged, more stressed, or worked harder at any job than I have at being an elementary librarian. I also have never found anything to be more professionally and personally rewarding. I love my job, I love my colleagues, and I love my students. As I said before, i generally love too deeply and too much. With kids, you just can't. I would also say that I have never felt more loved than I have in my school with the adults and children that I am blessed to work with everyday. I know understand what joy truly is - it's been their gift to me.
Monday, June 11, 2007
Children with autism get day in court
"Children with autism get day in court
By ANDREW BRIDGES, Associated Press Writer
Mon Jun 11, 12:46 PM ET
The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.
Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.
Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.
Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.
"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.
Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.
"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.
The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.
Large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.
"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.
Powers said that the science regarding a possible vaccine-autism link is in dispute.
Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.
"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.
Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.
Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines."
I have never been a big believer in the vaccine theory - I am all for pursuing answers, but I have never thought that the onset on Jimmy's autism was related to his immunizations. Now ear infections - don't get me started on those. There are questions to be answered, but I don't think it is all in one place.
By ANDREW BRIDGES, Associated Press Writer
Mon Jun 11, 12:46 PM ET
The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.
Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.
Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.
Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.
"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.
Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.
"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.
The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.
Large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.
"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.
Powers said that the science regarding a possible vaccine-autism link is in dispute.
Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.
"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.
Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.
Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines."
I have never been a big believer in the vaccine theory - I am all for pursuing answers, but I have never thought that the onset on Jimmy's autism was related to his immunizations. Now ear infections - don't get me started on those. There are questions to be answered, but I don't think it is all in one place.
Saturday, June 09, 2007
A Big Saturday
My school carnival, a trip to a pool. I started the morning feeling lousy, but I am glad I got my second wind. Jimmy floated in a tube, by himself, on the lazy river. I was never far away, but it was still liberating. I can take him in the lazy river and it's all okay. He's not scared, he enjoys it, I enjoy walking in the current. His progress often equates freedom for me. We are both happy.
Friday, June 08, 2007
Jimmy's Latest Brillance
Jimmy told both my mom and my sister that he loved them for the first time on the phone this week. I neglected to mention it in favor of the bowling post. No, it isn't a reflection of priorities. Bowling came with pictures.
Thursday, June 07, 2007
Jimmy Bowls a 69
Jimmy and his class went bowling. I was able to break free to chaperone. I was surprised - he really seems to enjoy it. Unfortunately, 69 was the worst score. The other two kids scored in the 80s. Maybe his mom "helped" too much!
Tuesday, June 05, 2007
Jimmy's PALS Scores
PALS stands for Phonological Awareness Literacy Screening. It is a very basic reading test, assessing phonomenic awareness, phonics, fluency, and core reading vocabulary. For Kindergarten, the fall benchmark score is 28 and the spring is 81. Jimmy's fall test was a 7. His spring test was a 94. I think is testimony to both the instruction and the consult services brought in for his attention and behavior issues. I am just astounded at the progress this reflects in him. I am stunned. He just amazes me all the time. Of course, as I am typing this, he is playing in the toilet.
Sunday, June 03, 2007
South Carolina Health Plans to Cover Autism
S.C. health plans to cover autism
By Savannah Morning News
Created 2007-06-01 23:30
Kirsten Singleton | Saturday, June 2, 2007 at 12:30 am
COLUMBIA, S.C. [1] - For families of autistic children, the financial options are few and often unattractive. Ask grandparents for help. Take out a second or third mortgage. Limit their children's treatment or pay for it themselves, sometimes at an annual cost of $50,000 to $60,000.
"A lot of families, in most cases, Mom stays home and tries to learn the best she can to try and do it (the treatment) on her own," said Craig Stoxen, president of the South Carolina Autism Society.
Now, though, the state is stepping in to offer help.
Among the 47 S.C. bills that became state law this week is a provision that requires health insurers to cover disorders such as autism and Asperger's syndrome.
There are exceptions and exemptions, such as for small businesses, but the state health plan is included.
"All I know is, being stuck in the middle with two autistic children, it's as necessary for insurers to cover (autistic children) as it is if they had diabetes or muscular dystrophy or cancer," said Aiken resident Amy Weeks, who has two autistic teenagers.
The requirement is projected to cost employers about $10.6 million annually, including $6.57 million to the state's general fund.
Sen. Dick Elliott, D-North Myrtle Beach, hopes state agencies can use discretionary funds to cover the cost this year so the state doesn't have to wait for next year's budgeting process to start funding the plan.
Elliott said it'll be cheaper for the state to pay to treat autistic children than to pay for their institutionalization if treatment was unavailable.
"It's comparing nickels and dimes to hundred-dollar bills as far as the cost to taxpayers and cost to the state," he said.
By Savannah Morning News
Created 2007-06-01 23:30
Kirsten Singleton | Saturday, June 2, 2007 at 12:30 am
COLUMBIA, S.C. [1] - For families of autistic children, the financial options are few and often unattractive. Ask grandparents for help. Take out a second or third mortgage. Limit their children's treatment or pay for it themselves, sometimes at an annual cost of $50,000 to $60,000.
"A lot of families, in most cases, Mom stays home and tries to learn the best she can to try and do it (the treatment) on her own," said Craig Stoxen, president of the South Carolina Autism Society.
Now, though, the state is stepping in to offer help.
Among the 47 S.C. bills that became state law this week is a provision that requires health insurers to cover disorders such as autism and Asperger's syndrome.
There are exceptions and exemptions, such as for small businesses, but the state health plan is included.
"All I know is, being stuck in the middle with two autistic children, it's as necessary for insurers to cover (autistic children) as it is if they had diabetes or muscular dystrophy or cancer," said Aiken resident Amy Weeks, who has two autistic teenagers.
The requirement is projected to cost employers about $10.6 million annually, including $6.57 million to the state's general fund.
Sen. Dick Elliott, D-North Myrtle Beach, hopes state agencies can use discretionary funds to cover the cost this year so the state doesn't have to wait for next year's budgeting process to start funding the plan.
Elliott said it'll be cheaper for the state to pay to treat autistic children than to pay for their institutionalization if treatment was unavailable.
"It's comparing nickels and dimes to hundred-dollar bills as far as the cost to taxpayers and cost to the state," he said.
No Group Discount for Autism Care
An article in today's Post about a family with autistic triplets. I guess that's how my situation could be worse.
Saturday, June 02, 2007
I'm going to ALA
One more thing... I am going to ALA on Sunday, June 24th. It's here in DC. I have an events pass, but might register for the programming if time and money allow. There is a reception for UT from about 7 - 9, so it will be a full day. I have friends from grad school, namely my partner in crime Susan J (we presented together at a couple of conferences) will be here. I am looking forward to seeing her.
Should be fun. Can't remember the last time I took Metro anywhere!
Should be fun. Can't remember the last time I took Metro anywhere!
Jimmy's First Movie... sort of
Well, I wound up taking both boys to Shrek 3, along Diana, Gage, and his mom. Jimmy sat through the trailers with complete attention. He was in my lap and not moving, but it was okay. About 30 minutes into the movie, he was done. He wasn't horrible, but I didn't want to push it, so we left. Regal Cinema very nicely gave me my money back when I explained the situation. The two us went shopping at Kohl's and Old Navy while we were waiting. I was sad we didn't see the movie, but all things consider... well, 40 minutes for him of sitting still and attention in a loud theater, which is a completely new setting to him, was amazing!
A Reprieve
Next weekend is the last weekend of soccer. I just got the e-mail. Not that our season was particular long or anything, but I should never have taken it on as a committment - and by committment, I mean the coaching part. Just adds another level of stress. I am extremely happy. Now I can find a swim class for Jimmy. I won't be in charge of that!
Friday, June 01, 2007
Happy Friday!
A weekend full of activities. Soccer on Saturday. Taking Jacob and his friend to Shrek 3. Jimmy has therapy on Sunday and I might try to take him to the pool at Signal Hill, which should be open. Weekends don't feel like days off. Then again, vacations don't feel like vacations either - just changes of venue with less resources. The joy of having kids.
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