How to keep Jimmy from wandering the house...

Put on Sesame Street... as much as he loves Sesame Place, he is extremely adverse to the show. Runs out of the room every time.

Birthday Party photos...

T took some amazing photos... I am going to have to hit her up for more. I think she has found another talent!

Most Expensive Birthday Ever

Well, it stopped raining this morning. We were able to hold the party at the pumpkin patch after all, where much fun was had by young and old alike. There were three moonbounces and two inflatable slides. We bumped into Jimmy's teacher, whom he readily greeted with a hello. I didn't get any pics, but my in-laws and T all got photos, so I should have some shortly.

Jacob got quite the haul in presents. He got the Optimus Prime foam launcher toy, which he has coveted for awhile. He went behind the TV to retrieve a missing dart and PUSHED THE TV OVER. Killed it. I had to go to Walmart to get a new one. An extra $300 I didn't expect to spend this weekend. He is seriously on my poo list.

Oh, and we left the car door open as we were unloading it. The chief of police knocked on our door to let us know. He had the mayor in the car with him, out for a Saturday night patrol. They got a good laugh at my day. Just another quiet evening in Manassas Park.

Another Rained-Out Birthday

We have had a pumpkin patch birthday planned for Jacob for a month now. It's a part of a nursery, but has four moon bounces. Seems perfect for the kids. We've been in a drought, so it has been weeks since it rained. Until the past two days - and through tomorrow now as well. I have a plan B in place - Chick-fil-a, which has a small play place. But both Jacob and I are kind of bumming. But T is bringing her kids over and I have two good friends from working bringing friends for Jacob as well.

This is the second outdoor birthday I have planned. Both have been this year. Both have been dampened by the rain. Never again.

Little Boy Lost

Or maybe Mom is just overtired. The consult that was approved at FAPT six weeks ago has yet to be completed. It is harder and harder to measure his progress as he makes strides in some areas and slips around in others. The school didn't even do a proper report card for him - because they are doing nothing academic with him. Again, I have no sense of what he does with his day. There is no data collected for him at school, so I have nothing tangible with which to assess his progress. I feel like the wheels are spinning and time is slipping away.

I guess the bright spot is for the second day in a row, he was asleep by 8pm. Of course, Jacob didn't let me finally go to sleep until almost 11. Hopefully, I will get to sleep a little earlier tonight.

My day...

I went to Starbucks, only to have it take so long that I was forced to leave without my paid for coffee. Fortunately, my neighborhood store was nice enough to give me a free one this afternoon. I am home alone tonight, but I am going to medicate Jimmy at 7. Both the boys as well as myself need the sleep...

It's 3:30 am...

And I have been up for two hours. Jimmy is up pacing his room with some insane vocal stims. It's nuts. I dealt with it for an hour and then tried to fall back asleep with Jimmy safely in his room. Didn't happen. So I am up... And it is bookfair week, so I can't call out tomorrow. Ugh.

I did see the middle part of "Transformers" - it's a pretty good movie. No wonder the boys are so into it.

Poop Patrol

I have to listen for every trip to the bathroom now. How does a kid who was doing so well come to be one who can't help but to play in his own poo? It is making me crazy.

A Kick in the Teeth

So, I have been looking for a DAN doctor. Most aren't accepting new patients. I found one that I heard that wasn't. One that was listed as taking my insurance. She isn't taking new patients either. For some reason, I took this news really hard, harder than intellectually I know I should.

Her office gave me a reference to a doctor in Lynchburg - three hours each way. She was listed as accepting insurance on my company's website, but her website said that they are no longer taking insurance. Doctor's visits are $350. You have two of them in the first month. How depressing is that?

Why won't conventional doctor's look into this whole yeast thing? Why can't DAN doctors take insurance? Can someone please explain it to me?

For my sister Becky...

...who will likely file this under "You never shut up!"

Do your duty: come out and vote on Nov. 6
LETTER TO THE EDITOR
Potomac News
Tuesday, October 16, 2007

With the upcoming elections for state office rapidly approaching, I am saddened when I think the vast majority of registered voters will not even take the time to go to the polls. There are those who feel like a single vote won't make a difference or feel that the issues that the candidates are discussing are not relevant to their lives. If that's the case, it is a voter's responsibility to dig deeper.

For a voter like myself -- whose greatest passion and issue is the one that touches my life the most: autism -- getting the answers that are important to me requires more than just reading what arrives in my mailbox. Fortunately, I have found Jeanette Rishell, Delegate Jackson Miller, Bob Fitzsimmonds and State Senator Chuck Colgan more than willing to return a call and talk to me about what is most important to my vote -- the range of needs of autistic children and adults and how to best meet them in the public and private sectors.

All have been gracious, engaged, and attentive. Not one has offered miracles, but they have listened and promised to continue to do just that if elected.

As frustrating as politics can be at times, the right to vote is a gift that many in the world never get. I would encourage people to ask questions of these candidates, think about what is important to you, and vote. Democracy was never meant to be a spectator sport -- please be an active participant on Tuesday, Nov. 6.

A Shout Out to T

To make you feel better...

Celebrating Post 501...

I just looked at my Blogger Dashboard and it said I had 500 posts. I am kind of amazed that I have stuck with it this long.

Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.

But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.

Colin Farrell interview

His son suffers from a rare form of CP - he gave this really touching interview to a British media outlet.

Combating Autism Act Appropriations

For those interested in the appropriations part of the Combating Autism Act. I hope these appropriations will be supported as they have the potential to benefit kids like my son.


October 1X, 2007

Dear Chairman Obey and Ranking Member Walsh:

On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we thank you for your leadership in including $16.5 million at the CDC for autism activities in H.R. 3043, the 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, and respectfully request that you provide at least the House level for autism activities at the CDC and support at least the Senate level of $37 million in HRSA, for autism activities in the Conference Report on the Fiscal 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill. In addition, we respectfully request that the House conferees agree to the Senate level of $1 million within the Office of the Secretary of Health and Human Services for administration of the Inter-Agency Autism Coordinating Committee.

As you may know, it is estimated that 1 in 150 children in this country has autism or another Autism Spectrum Disorder (ASD), making it more common than pediatric cancer, diabetes, and AIDS combined. The condition has truly become an epidemic, yet federal funding for autism research is less than that for much less prevalent diseases.
Last year, Congress very appropriately responded to this crisis by enacting the Combating Autism Act (CAA). For Fiscal 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out autism education, early detection, and Intervention programs; and (3) $114.5 million for the HHS Secretary and the NIH to form and operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.

Both the House and Senate passed these authorizations, the House by voice vote and the Senate by Unanimous Consent. Again, we thank you for your support in the House-passed Labor, Health and Human Services Bill, H.R 3043.

We thank you for considering this most important request. If you have any questions or would like additional information, please contact Kenneth DeGraff in the office of Rep. Doyle at (5-2135), Tim Lynagh in the office of Rep. Chris Smith (5-3765), or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).

Sincerely,

Mike Doyle
Christopher H. Smith
Carolyn McCarthy

Fall Festival Photos

Yesterday was an anticipated October event for us... the Manassas Park Fall Festival and Fire Station Open House. We go every year. It was Jimmy's first time on one of those inflatable slides. It was smaller than the ones he has seen before, but he did it. I hope he will make it down the shark slide at his brother's birthday. Jacob didn't want his photo taken, so he turned around mid-slide. The last photo was of Jacob learning how to use the fire hose. Once the fire chief taught him, we couldn't drag him away. He tried to nail me with it - fortunately, I moved quickly.

Another visit from the Ear Infection Fairy

He is back on antibiotics. I am kicking myself, because I know they are part of what's wrong with him. I feel like a hamster on a wheel. He has been fighting us tooth and nail this time on the medication. We were losing the battle last night - until Dad got him to suck down the medication... as he slept. Whatever works.

Something I have been looking into...

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.

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.

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!!!!

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.