Late Nights

So Jimmy sleep meds aren't working as well as they use. We were woken up by Jimmy at 2 am, who thought that was the perfect time to begin his day. While we took turns trying to sleep, Jimmy stayed up and surfed the web all night for Boohbahs. I am completely serious. I went through the history. He played games, looked at Boohbah images, and a bunch of YouTube Boohbah videos. Nutty stuff. The husband got to make up some sleep (certainly not enough), so I caught a nap when I got home. I am still tired. I think I am going to head to bed now. And, from the looks of it, Jimmy is going down tonight sans medication. He has to be pooped as well.

Tomorrow I met with Jimmy's teacher to check his progress. He had a string of potty accidents last week, so I want to make sure that has been addressed.

We're #3

Well, if you google "autism john mccain," I am the third post that comes up for my earlier post on John McCain and Hillary Clinton's stances on autism as they related to their candidacy. This has resulted in an increase of traffic for my little blog. Nothing dramatic, but encouraging me that I am not alone in consider autism as a campaign issue. If you are dropping by for that little post, please consider checking the rest of my little blog out and setting out to make autism that is something discussed during this election cycle. My experience with HB83 leaves me a little disheartened with the process and my ability to get anything done by myself. Yet, 1 in 150 children has autism in this country. These kids have parents, grandparents, aunts, uncles, teachers, and so on that feel strongly about the need for medical and therapeutic care, the right to education, and any hope these kids have for the future. Jimmy doesn't have a voice, so I raise mine for him and every child like him. If you care about someone living with autism, I beg you to raise yours.

A letter to the editor that explains a little more about what happened to HB83

"Unfortunately, the House Labor and Commerce Committee has decided more study is needed and has forwarded HB 83 to a commission to study the bill and provide recommendations for next year's session. I hope they will realize the error in the current insurance company interpretation of federal education law and recommend passage of the bill. I urge all of our delegates and senators to join Marshall in his efforts to level the playing field for children with disabilities."

So it isn't dead forever, just for this year.  It could easily be studied to death, though.  If you feel passionately, you should call your elected officials and urge them to help out kids like Jimmy.

Jimmy's first post

boohbah

walmart

He typed the words and posted the photo.

Sad News from Richmond

From the Potomac News

"HB 83 Mandated insurance coverage for children.

Del. Jackson H. Miller, R-Manassas is a cosponsor of this bill.

It was killed by the House Commerce and Labor Committee and would have required insurance companies to provide coverage for habilitative services for children."

First, I can't believe the reporter left out that whole "autism" thing.  Habilitative services for children with autism.  

This proves yet again that most legislators in Richmond don't give a crap about kids with autism.  If my past experience hold true, the business lobbyists went in there to speak on the bill, saying it would cost companies too much in premiums.  Poof.  Dead.  

More Presidential Stuff

"As Super Tuesday draws nearer, it seemed to me to be time to look more closely at what candidates have to say about autism. Interestingly, the three top Democrats all have honest-to-goodness autism "platforms" - while the Republicans seem to have sidestepped the issue. This is not to suggest that Dems care more about people with disabilities, but the issue does seem to be more prominent on the Democratic radar."

The American Association of People with Disabilities sent a survey to all the candidate on a variety of issues. No Republicans responded to the survey, though John McCain participated in one of their candidate forums on disabilities.  

With the number of families struggling with autism and just the number of people with disabilities in general in this country, I can't imagine not taking the time to answer a survey.

Job Search Update

Still unemployed.  The search goes very slowly.  I am sort of disgusted that this economic stimulus package won't extend unemployment benefits.  We will likely need them.  He applied for two jobs with the local newspaper - not the only jobs he has applied for, but the ones I am most optimistic about.  I am hoping and praying that one of those works out.  The jobs close at the end of the month.  The husband really is trying - he applies for multiple jobs a day and has been on a few interviews.  He just isn't coming up with anything.

I got Jimmy's therapy schedule - early for the first time.  I am really happy!  I got to put it in my planner so I can plan the rest of my month.  It relieves a huge burden just to be able to do that.  He is having a rough couple of days, too.  He isn't feeling well and had a bathroom accident at school today.  Dad had to take him a change of clothes before he went to his first physical therapy appointment.  

Wow, life really has been a drag this year.  And it's only January.  It's got to get better.  

'Underdiagnosed' Girls With Autism Struggle to Fit In

"It is exactly this desire to please that Myles believes may explain how a girl with autism could fool the experts, so to speak.

"We overtly teach social skills to girls," Myles said. "They are told not to get angry, they are told to be nice, they are told to share -- all of those behaviors."

Myles believes these social skills are not as ingrained in boys as they are in girls. "It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl," Myles said. "

This article is very interesting... I never thought of autism this way for girls, that we are socialized to overcompensate. The last paragraph goes to the stigma that still exists for all parents of children with autism, especially those who are among the highest functioning.

""Nightline" recently followed Kaeda around school and met a faculty member who was skeptical, suggesting that the children's challenges had to do with the way they were parented. Myles said that kind of reaction is "heartbreaking, and indicates a gross misunderstanding of autism spectrum disorders. And I'm not blaming that indiviudual staff member, but he or she doesn't understand.""


Brenda Myles is much more understanding than I am. Jimmy seems to be much lower functioning than these children, but for years autism has been equated to and dismissed as bad parenting. If anyone suggested that to me about my child or any other child with autism, like my son's classmates, they would catch hell from me. I am stunned that an educator working in this day and age would say that.

My birthday weekend...

Went well, except for tweaking my lower back.  I made it out to see Cloverfield today, which was very good - well hyped on the Internet, left more questions than it answered.  I can't wait to see what sort of sequel they come up with for it.  

Watched the UFC last night - Jorge Rivera had an Autism Speaks logo on his shirt.  I was thrilled to see a fighter raise awareness for autism.  My husband sent an e-mail to ask about the shirt and to ask about doing an interview for his MMA website, so we are hoping to hear back from him.  It probably is a silly thing to get excited about, but it made my night.  Oh, and he won his fight - made his night as well, I guess.  

Sorry I don't have more to say, but my back hurts a lot.  I am going to take a muscle relaxer and contemplate my navel for the remainder of the evening.  

Happy Birthday to Me

I must go get the boy up and get to the mall.  It's my birthday and I am going shopping with my mom.  Jimmy is a little under the weather - he has been very anxious and doesn't seem to be feeling well, so I am leaving him home this trip.  Makes me sad - I really like taking him around the mall.  

Went to Cheesecake Factory last night (note to those interested, CF and Alli - the weight loss med - are not friends) where we didn't wait for a table and got a parking spot easily.  Of course that makes up for Jacob crapping his pants in traffic and Jimmy having a huge meltdown en route to respite at the church.  But we had a nice meal - that counts, right? 

My Continuing Quest

I sent e-mails to the Romney and McCain campaigns tonight.  I hope to hear back from them soon.  I think every candidate should articulate autism as a policy issue this cycle.  One out of 150 children in this country has been diagnosed with autism.  Doesn't that make it one out of 75 parents have a child with autism?  And these people have grandparents and other family members too - many of whom vote as well.

An e-mail from the Edwards campaign...

Dear Rachel-

Thank you for writing John Edwards about autism.  He appreciates that
you took the time to share your thoughts and concerns.  Hearing from
people all over the country about the issues important to them
strengthens our campaign.

Autism is a quiet crisis, affecting an astonishing 1 in 150 children and
four times as many boys as girls.  Nobody knows why diagnoses have risen
tenfold just over the past decade.

We need to find the causes so we can help protect our children.  The
National Institutes of Health have concluded that childhood vaccines are
not the cause, but many families are not convinced.  As president, John
Edwards will double funding for autism research, issue an all-hands-on
deck challenge and follow the results wherever the science takes us.

We also need to take better care of children affected today.  Our plan
for universal health care, guaranteed coverage of autism care in
Medicaid and private insurance, and better investments in special
education and home health workers will assist families to support and
treat children with autism and help children, and adults, reach their
full potential.

We should also invest more in recruiting, training and paying
sufficiently teachers, therapists, psychologists and others working in
the special education field.  It's time to finally get on a path to
fully funding special education.

This is an area John Edwards has been involved with for a long time.  He
started fighting to help families with autism when he first arrived in
the Senate.  One of the very first bills he introduced and help make law
was the Fragile X Breakthrough Research Act, which provided new
resources for a genetic condition that results in autism for thousands
of children.  The Senate passed the bill into law, providing new
resources for research devoted to Fragile X.

Again, thank you for sharing your ideas with the campaign.

Sincerely,
The Edwards Team

The Countdown

My birthday is on Saturday.  No, I am not going to tell you how old I am (a few kids asked me today at work.)  Suffices to say that I am old enough.  I am supposed to go shopping with my mom if the weather holds.  I think I have to take the kids though - I would love to have an afternoon off of them, but I don't think I will get that.  Jimmy's the healthy one at the moment.  Jacob was off school for two days after vomiting all over the doctor's office at my appointment.  In this house, the adults are on antibiotics.  I have a respiratory infection and the man has a sinus infection going on.  It's slowed his job search to a crawl - no live prospects this week.  I really want him to get something going soon.  Beginning of the year, sick, bad economy - it really is a horrible time to be looking for a job.  

Jimmy came in our bedroom doorway (he doesn't like to come into our room - a little OCD thing that makes me crazy) at 6 a.m. and kept saying "Mommy, Mommy, Mommy."  He has rarely called me that in his life.  In the past, he didn't address me in anyway.  He generally doesn't address people by name without a prompt.  Yet, he kept saying it over and over - Mommy.  It was beautiful.  

Great news on HB 83!

From my delegate today:

"I have decided to co-patron HB 83. I look forward to following it through
committee and voting for it on the House floor."

Thank you, Jackson Miller!

I didn't rig this outcome...

I took a personality survey... guess who I am?

You Are Cookie Monster

Misunderstood as a primal monster, you're a true hedonist with a huge sweet tooth. You are usually feeling: Hungry. Cookies are preferred, but you'll eat anything if cookies aren't around. You are famous for: Your slightly crazy eyes and usual way of speaking How you life your life: In the moment. "Me want COOKIE!"

The Sesame Street Personality Quiz

Is Cookie Monster Silly?

Jimmy's question of the day.  He doesn't normally ask questions.  Even his requests are more like demands - "I want," instead of "May I have?"  But as he was putting together a Sesame Street puzzle, he turned to his therapist and asked.  She was stunned.  So was I.  Of course, I had to e-mail "Cookie Monster" from this summer to tell him.  He was pleased as well.

House Bill 83

Well, autism is making another appearance in the General Assembly this year.  This bill is being introduced by Delegate Bob Marshall, requiring insurers to cover autism.  I very much would like to see this bill make it out of committee.  If you are a Virginia voter, contact your delegate today to ask them to co-sponsor this important bill.  I sent an e-mail to Jackson Miller, my delegate to ask him to do the same.  I will keep you posted as to his response.  

Referred to Committee on Commerce and Labor

----------

Be it enacted by the General Assembly of Virginia:

1.  That § 38.2-4319 of the Code of Virginia is amended and reenacted and

that the Code of Virginia is amended by adding a section numbered

38.2-4318.15 as follows:

§38.2-3418.15. Coverage for habilitative services for children.

A. Notwithstanding the provisions of § 38.2-3419, each insurer proposing

to issue individual or group accident or sickness insurance policies

providing hospital, medical and surgical, or major medical coverage on an

expense-incurred basis; corporation providing individual or group accident

or sickness subscription contracts; and health maintenance organization

providing a health care plan for health care services shall provide

coverage under any such policy, contract, or plan delivered, issued for

delivery, or renewed in the Commonwealth on and after July 1, 2008, for

medically necessary habilitative services for persons younger than 19

years.

B. For the purposes of this section:

"Habilitative services" means health and social services directed toward

increasing and maintaining the physical, intellectual, emotional, and

social functioning of developmentally delayed individuals, including

occupational, physical, and speech therapy; assistance, training,

supervision, and monitoring in the areas of self-care, sensory and motor

development, interpersonal skills, communication, and socialization; and

reduction or elimination of maladaptive behavior. "Habilitative services"

does not include services for which coverage is provided or required to be

provided pursuant to § 38.2-3418.5.

"Medically necessary habilitative services" means habilitative services

that are certified by the Department of Mental Health, Mental Retardation

and Substance Abuse Services as designed to help an individual attain or

retain the capability to function age appropriately within the

individual's environment and shall include habilitative services that

enhance functional ability without effecting a cure.

C. An insurer, corporation, or health maintenance organization subject to

this section shall not be required to provide coverage for medically

necessary habilitative services to the extent that such services are

provided through the individual's school; however, this exclusion from

coverage shall not alter or diminish the obligation of an insurer,

corporation, or health maintenance organization to provide coverage for

medically necessary habilitative services that are not provided through

the individual's school.

D. An insurer, corporation, or health maintenance organization subject to

this section shall provide notice annually to its insured and enrollees

about coverage required under this section.

E. The provisions of this section shall not apply to short-term travel,

accident-only, limited or specified disease policies, contracts designed

for issuance to persons eligible for coverage under Title XVIII of the

Social Security Act, know as Medicare, or any other similar coverage under

state or federal governmental plans, or to short-term nonrenewable

policies of not more than six months' duration.

§ 38.2-4319. Statutory construction and relationship to other laws.

A. No provisions of this title except this chapter and, insofar as they

are not inconsistent with this chapter, §§ 38.2-100, 38.2-136, 38.2-200,

38.2-203, 38.2-209 through 38.2-213, 38.2-216, 38.2-218 through 38.2-225,

38.2-229, 38.2-232, 38.2-305, 38.2-316, 38.2-322, 38.2-400, 38.2-402

through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through 38.2-620,

Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through 38.2-1023,

38.2-1057, Article 2 (§ 38.2-1306.2 et seq.), § 38.2-1306.1, §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-1800 through

38.2-1836, 38.2-3401, 38.2-3405, 38.2-3405.1, 38.2-3407.2 through

38.2-3407.6:1, 38.2-3407.9 through 38.2-3407.16, 38.2-3411.2, 38.2-3411.3,

38.2-3411.4, 38.2-3412.1:01, 38.2-3414.1, 38.2-3418.1 through

38.2-3418.1434.2-3418.15, 38.2-3419.1, 38.2-3430.1 through 38.2-3437,

38.2-3500, subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Article 5 (§ 38.2-3551 et seq.) of

Chapter 35, Chapter 52 (§ 38.2-5200 et seq.), Chapter 55 (§ 38.2-5500 et

seq.), Chapter 58 (§ 38.2-5800 et seq.) and § 38.2-5903 of this title

shall be applicable to any health maintenance organization granted a

license under this chapter. This chapter shall not apply to an insurer or

health services plan licensed and regulated in conformance with the

insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title except

with respect to the activities of its health maintenance organization.

B. For plans administered by the Department of Medical Assistance Services

that provide benefits pursuant to Title XIX or Title XXI of the Social

Security Act, as amended, no provisions of this title except this chapter

and, insofar as they are not inconsistent with this chapter, §§ 38.2-100,

38.2-136, 38.2-200, 38.2-203, 38.2-209 through 38.2-213, 38.2-216,

38.2-218 through 38.2-225, 38.2-229, 38.2-232, 38.2-322, 38.2-400,

38.2-402 through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through

38.2-620, Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through

38.2-1023, 38.2-1057, § 38.2-1306.1, Article 2 (§ 38.2-1306.2 et seq.), §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-3401, 38.2-3405,

38.2-3407.2 through 38.2-3407.5, 38.2-3407.6 and 38.2-3407.6:1,

38.2-3407.9, 38.2-3407.9:01, and 38.2-3407.9:02, subdivisions 1, 2, and 3

of subsection F of § 38.2-3407.10, 38.2-3407.11, 38.2-3407.11:3,

38.2-3407.13, 38.2-3407.13:1, and 38.2-3407.14, 38.2-3411.2, 38.2-3418.1,

38.2-3418.2, 38.2-3419.1, 38.2-3430.1 through 38.2-3437, 38.2-3500,

subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Chapter 52 (§ 38.2-5200 et seq.),

Chapter 55 (§ 38.2-5500 et seq.), Chapter 58 (§ 38.2-5800 et seq.) and §

38.2-5903 shall be applicable to any health maintenance organization

granted a license under this chapter. This chapter shall not apply to an

insurer or health services plan licensed and regulated in conformance with

the insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title

except with respect to the activities of its health maintenance

organization.

C. Solicitation of enrollees by a licensed health maintenance organization

or by its representatives shall not be construed to violate any provisions

of law relating to solicitation or advertising by health professionals.

D. A licensed health maintenance organization shall not be deemed to be

engaged in the unlawful practice of medicine. All health care providers

associated with a health maintenance organization shall be subject to all

provisions of law.

E. Notwithstanding the definition of an eligible employee as set forth in

§ 38.2-3431, a health maintenance organization providing health care plans

pursuant to § 38.2-3431 shall not be required to offer coverage to or

accept applications from an employee who does not reside within the health

maintenance organization's service area.

F. For purposes of applying this section, "insurer" when used in a section

cited in subsections A and B of this section shall be construed to mean

and include "health maintenance organizations" unless the section cited

clearly applies to health maintenance organizations without such

construction.

§ 38.2-4319. Statutory construction and relationship to other laws.

A. No provisions of this title except this chapter and, insofar as they

are not inconsistent with this chapter, §§ 38.2-100, 38.2-136, 38.2-200,

38.2-203, 38.2-209 through 38.2-213, 38.2-216, 38.2-218 through 38.2-225,

38.2-229, 38.2-232, 38.2-305, 38.2-316, 38.2-322, 38.2-400, 38.2-402

through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through 38.2-620,

Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through 38.2-1023,

38.2-1057, Article 2 (§ 38.2-1306.2 et seq.), § 38.2-1306.1, §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-1800 through

38.2-1836, 38.2-3401, 38.2-3405, 38.2-3405.1, 38.2-3407.2 through

38.2-3407.6:1, 38.2-3407.9 through 38.2-3407.16, 38.2-3411.2, 38.2-3411.3,

38.2-3411.4, 38.2-3412.1:01, 38.2-3414.1, 38.2-3418.1 through

38.2-3418.1438.2-3418.15, 38.2-3419.1, 38.2-3430.1 through 38.2-3437,

38.2-3500, subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Article 5 (§ 38.2-3551 et seq.) of

Chapter 35, Chapter 52 (§ 38.2-5200 et seq.), Chapter 55 (§ 38.2-5500 et

seq.), Chapter 58 (§ 38.2-5800 et seq.) and § 38.2-5903 of this title

shall be applicable to any health maintenance organization granted a

license under this chapter. This chapter shall not apply to an insurer or

health services plan licensed and regulated in conformance with the

insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title except

with respect to the activities of its health maintenance organization.

B. For plans administered by the Department of Medical Assistance Services

that provide benefits pursuant to Title XIX or Title XXI of the Social

Security Act, as amended, no provisions of this title except this chapter

and, insofar as they are not inconsistent with this chapter, §§ 38.2-100,

38.2-136, 38.2-200, 38.2-203, 38.2-209 through 38.2-213, 38.2-216,

38.2-218 through 38.2-225, 38.2-229, 38.2-232, 38.2-322, 38.2-400,

38.2-402 through 38.2-413, 38.2-500 through 38.2-515, 38.2-600 through

38.2-620, Chapter 9 (§ 38.2-900 et seq.), §§ 38.2-1016.1 through

38.2-1023, 38.2-1057, § 38.2-1306.1, Article 2 (§ 38.2-1306.2 et seq.), §

38.2-1315.1, Articles 3.1 (§ 38.2-1316.1 et seq.), 4 (§ 38.2-1317 et seq.)

and 5 (§ 38.2-1322 et seq.) of Chapter 13, Articles 1 (§ 38.2-1400 et

seq.) and 2 (§ 38.2-1412 et seq.) of Chapter 14, §§ 38.2-3401, 38.2-3405,

38.2-3407.2 through 38.2-3407.5, 38.2-3407.6 and 38.2-3407.6:1,

38.2-3407.9, 38.2-3407.9:01, and 38.2-3407.9:02, subdivisions 1, 2, and 3

of subsection F of § 38.2-3407.10, 38.2-3407.11, 38.2-3407.11:3,

38.2-3407.13, 38.2-3407.13:1, and 38.2-3407.14, 38.2-3411.2, 38.2-3418.1,

38.2-3418.2, 38.2-3419.1, 38.2-3430.1 through 38.2-3437, 38.2-3500,

subdivision 13 of § 38.2-3503, subdivision 8 of § 38.2-3504, §§

38.2-3514.1, 38.2-3514.2, 38.2-3522.1 through 38.2-3523.4, 38.2-3525,

38.2-3540.1, 38.2-3542, 38.2-3543.2, Chapter 52 (§ 38.2-5200 et seq.),

Chapter 55 (§ 38.2-5500 et seq.), Chapter 58 (§ 38.2-5800 et seq.) and §

38.2-5903 shall be applicable to any health maintenance organization

granted a license under this chapter. This chapter shall not apply to an

insurer or health services plan licensed and regulated in conformance with

the insurance laws or Chapter 42 (§ 38.2-4200 et seq.) of this title

except with respect to the activities of its health maintenance

organization.

C. Solicitation of enrollees by a licensed health maintenance organization

or by its representatives shall not be construed to violate any provisions

of law relating to solicitation or advertising by health professionals.

D. A licensed health maintenance organization shall not be deemed to be

engaged in the unlawful practice of medicine. All health care providers

associated with a health maintenance organization shall be subject to all

provisions of law.

E. Notwithstanding the definition of an eligible employee as set forth in

§ 38.2-3431, a health maintenance organization providing health care plans

pursuant to § 38.2-3431 shall not be required to offer coverage to or

accept applications from an employee who does not reside within the health

maintenance organization's service area.

F. For purposes of applying this section, "insurer" when used in a section

cited in subsections A and B of this section shall be construed to mean

and include "health maintenance organizations" unless the section cited

clearly applies to health maintenance organizations without such

construction.

What up, T!

John Mayer says hi...

Meet my oldest nephew...

This is JJ.

Why did they put this on YouTube? Hawaiians love their karaoke a little too much.

I did do one more thing today...

Autism Speaks launched a multi state insurance legislation campaign today.  I sent a link to their website to Delegate Jackson Miller.  Since I have spoken to him about the problems related to coverage on several occasions, I fully expect that he will be in touch.  I can't wait until we get something going here.  Reminds me that I have a few letters to write tonight, including one to Governor Kaine.

I will take up knitting one day.  I promise.

Combating Autism Act has been funded...

Now hopefully the money can get out and do some good.  

Not much going on here.  Jimmy had therapy this afternoon.  He paid attention well, but had sort of an off day.  He took a nap, which never happens.  He needs the rest, though.  He has session again at 8 a.m. tomorrow.  

I contacted all three major Democratic campaigns this week.  My messages were promptly thrown into the policy abyss.  John Edwards campaign did take the time to call me back and said that their policy people would likely be back in touch.  I like Edwards a lot right now.  

Maybe I should call McCain's campaign next week.  They seem like they are doing well.  Maybe Huckabee too.  I have no idea who could be considered third in the Republican race.  It seems in flux.

Genetic glitch raises autism risk

Chromosome 16 is what they are suggesting now.  I would love for them to find a cause or a set of causes that cause autism.  It would be a place to start forming real treatment.  

"They found that in people with autism, a segment of a chromosome that has genes linked to brain development and various developmental disorders was either missing or duplicated far more often. The defect was inherited in some cases, but more often the result of a random genetic accident."

The Indignities of Therapy

Okay, I have kind of kept quiet on one of my biggest life stressors - Jimmy's therapy schedule - for fear of appearing ungrateful.  I am pleased for the level of help my son is getting.  I have worked hard to secure it for him.  But let me tell you what having nine hours of therapy a week for your child is like.  It's nine hours out of a life that has 40 to 50 hours a week cut out of it for work already.  Juggling it wouldn't be so hard if the "professionals" (and I am using the term loosely) working with my child actually got me a schedule in a timely fashion.  Getting January's schedule on New Year's Night isn't helpful.  It does beat the heck out of the months I received no schedule at all.  I guess that schedule would have also been better received if it had been correct (they scheduled him for 11 hours when he only gets 9) and if they had asked about our weekend availability before they scheduled him every single weekend.  We got the schedule straightened out, at least I thought we did until I got a phone call saying that the therapist wasn't going to be there at 3:30, she would come at 4:15.  

When your child has autism, I guess the people working with you expect it to be your life.  Is that healthy?  I don't know, but it certainly isn't fair for Jacob, who I can't even sign up for soccer or swimming lessons this spring simply because I don't know from week to week what schedule the lead therapist is going to present or rescind.  Try to live your life at the whim of others.  It sucks.  

It bears repeating...

From the Autism Society website...

• 1 in 150 births
• 1 to 1.5 million Americans
• Fastest-growing developmental disability
• 10 - 17 % annual growth
• Growth comparison during the 1990s:
  • U.S. population increase: 13%
  • Disabilities increase: 16%
  • Autism increase: 172%
• $90 billion annual cost
• 90% of costs are in adult services
• Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
• In 10 years, the annual cost will be $200-400 billion

Hillary Clinton has an autism plan as well...

That means all of the "Big Three" Democratic candidates have an autism platform, while the other Democrats and Republicans do not... 1 in 150 children and possible 10% of boys my son's age are autistic. At least Hillary Clinton, John Edwards, and Barack Obama recognize the pressing need - insurance companies do nothing for you when your child has autism (especially Kaiser Permenente) and there is little help to shoulder the crushing burden of the needs of these kids.

I know it is politics and what not, but I thank Senators Clinton, Edwards, and Obama for taking a stand (at least on paper) to help kids like my son. It means everything to me.

Maybe I am a little too political, but I love Jimmy. If you were in my shoes, you would be screaming too.

We had his evaluation today. I will post at more length when we get the full results. Suffices to say that he is not MR.

This is why we should be afraid...

This is from another parent's post on a list that I am on.  10% of young boys in this country are autistic to some degree.  What will be out there for them in the future?  

"Like a lot of parents, I am concerned about what will happen when my
son's generation (9 years old) and the rest of his peers with autism
(10% of male population that age, according to CDC) mature and need
services. My son also does not have mental retardation by the "book"
and so does not qualify for group living by current standards. This
is going to be a huge social problem for our country, and for us, as
aging parents and caregivers."

Melting Down

Jimmy melted down for an hour last night and a good half an hour this morning.  I have no idea what this morning was about.  Last night was a battle of the wills.  He wanted to get in the window naked and we stopped him.  Then he wanted to flip the switch on the wall - it's the outlet the computer is on.  We battled over that and it devolved into this kicking and screaming tantrum that I am not used to seeing from him.  I can't wait to talk to the doctor tomorrow.  

It's Friday

The husband had his third shot in his spine today - the herniated disks from the car accident.  We still are unsure about whether or not he will actually need back surgery.  There is a chance he won't - it's pretty wait and see.  He got a call for an interview on Wednesday with a company that he has submitted resumes to for a variety of positions - some contract, others full time.  That's the live one at the moment.  We are only a week into the "paid vacation" as my sister likes to call it, so I guess it isn't too bad.

Jimmy has a touch of a stomach bug.  I heard his stomach make a weird noise as he raced to the bathroom.  He made it, but it was messy - wound up in the tub.  I hope he is feeling well enough to go to respite tomorrow.  I am solo with Jacob for the afternoon at the mall again.  I am giving the husband a day off to recuperate.  Maybe I can get him to do Sunday so I can sleep.  I need sleep.  I am a little deprived this week.  

Two Dems that didn't mention autism on their campaign website...

Dennis Kucinich and Mike Gravel did not mention autism on their campaign websites.  In fairness, Congressman Kucinich is a member of the Congressional Autism Caucus, so I am fairly sure that he is active on the issue.  My husband, being the darling he is, just wants to vote for him because his wife has a tongue piercing and is gorgeous and half his age.  I am sure she is more accomplished than merely all that.

Bill Richardson's on board...

Bill Richardson's healthcare platform mentions autism - the sad thing is it had been so long since I have heard about him that I forgot he was running:

Autism

First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.

Who doesn't talk about autism? Part 2

You can add Ron Paul and Duncan Hunter to the list.  Mitt Romney?  The L.A. Times article above quoted a parent who was at a campaign event:

"Among the disappointed Iowans was Republican Linda Wessels, 41, of Rock Rapids. At a Romney forum in Sioux Center, her autistic 5-year-old son, Sam, asked the candidate how he would help children with the disorder.

"Cute little guy," Romney responded before launching into a monologue on topics including stem cell research and cloning — but not autism.

"I felt avoidance of the issue," Wessels said."

John Edwards' autism position

Autism made John Edwards' campaign website...

"Autism affects families from every walk of life. Sometimes I talk about the Two Americas – but when it comes to fighting for families affected by autism and autism spectrum disorders, we must come together as One America to deliver on our national promise – helping every child realize their full potential." -- John Edwards

Autism and autism spectrum disorders affect an astonishing 1 in 150 children. More children than ever before – a 700 percent increase over the last decade – are being classified as having an autism spectrum disorder. We need to learn more about why the number of children diagnosed with autism and autism spectrum disorders has been growing. We know that early intervention is often crucial to helping children with these diagnoses reach their full potential, but the education and health care resources needed to help them and their families are strained to capacity. For families, caring for a child with autism can be expensive and emotionally draining. While Congress took an important step last year by dedicating more than $900 million to address autism over the next five years, more can and must be done. [IDEAData, 2005; CDC, 2007]

John Edwards believes every child deserves the opportunity to reach his or her potential. Helping everyone reach personal independence and assume social responsibilities is a responsibility we all share. His Promise and Potential plan will:

• Guarantee quality affordable health care for families living with autism – ending insurance discrimination.
• Help unravel of mysteries of autism by issuing an all-hands-on-deck research challenge.
• Fund schools so they can provide essential services.
• Strengthen supports for families dealing with the diagnosis.
• Ensure a continuum of care with lifelong supportive services.

Hillary Clinton and John McCain both speak out on autism...

While neither candidate had autism referenced as part of their website, I did find videos from Senators McCain and Clinton discussing autism and their thought of the government's role.  

Who hasn't talked about autism?

After some googling and searching...

Mike Huckabee

Fred Thompson

Rudy Giuliani

I only got through three more candidates last night.  Sort of disappointing that only one of four so far has made it part of a campaign statement.  I think I will check out Hillary Clinton and Mitt Romney next. 

Obama's Campaign actually says something about autism...

"Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families."

This was the first search I have done on a candidate on this issue. I am pleased to see that he is addressing it as part of his healthcare policy. I am going to Google each candidate and see what they all have to say. Especially to a family living with autism, how a candidate sees addressing this issue is as important as any other policy issue.

Could someone explain...

Why my text goes from properly spaced to cramped when I have done nothing to make such a change?  I am officially annoyed.

Mommy, is your butt going to get smaller?

Jacob wanted me to drive him through Dunkin Donuts this morning.  I explained that I couldn't, that I was working on eating less and exercising more so I would lose weight.  Since I realized that wouldn't register for a four year old, I said I was trying to get smaller.  He asked if my butt was going to get smaller.  Nice.  

I did go ahead and rejoin Weight Watchers last night.  The longest I have ever stayed on the program is five months.  I am going to try for the year this time.  I haven't made it to the gym yet, but that will probably get added this weekend.  That is a hard one to schedule for me.  Wish me well.  

Speaking of schedules, Jimmy's psych eval was rescheduled to next week.  The doctor got strep.  I know that if you work with kids, these things happen.  Anyway, I did get to talk to her a bit.  At the recommendation of his therapists, we are going to ask her to recommend her someone here in town who could work with us on medication to address the hyperactivity and his emerging OCD tendencies.  He has to take the steps every other step going up or down a flight.  He insists on having the purple Venom first in his Spiderman fruit snacks.  He has some highly ritualized stuff going on now, things that never really were apparent before.   It was a trait of autism that I thought we had dodged when it didn't show up in his initial evaluations at Children's.  I guess that I never thought of autism as something that evolved over time - I though that he had the symptoms at diagnosis would be the only ones we dealt with and that the work would be to shed the symptoms.  Things change, I guess.  

Happy New Year

Happy New Year everyone. In 18 days I get be another year closer to 40. Whoopee. Lose weight, exercise, stay in better touch with friends, yada yada yada for the New Year goals. Yeah, I will work on those, but I am also hoping to make one of the presidential candidates answer a question about autism. That's my goal for the year. What do you think?