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?

New Year, New You

I did a much needed template update for this blog.  I am going to work on assigning labels for the individual posts over the next several weeks (it's the librarian in me) as well.  I hope you enjoy the new look!  

W is for Worksheet

Just when I thought I would be without a cute Jimmy story this morning.  I was so tired when Jimmy's therapist arrived this morning that I forgot his first words to her.  Session always starts with a trip to the bathroom, but Jimmy wanted no part of it.  His first request - "I want worksheet."  As an activity to work on his sitting,  they do some math worksheets.  She models one problem and he takes off on doing them.  She wanted him to go to the bathroom, so she explained that there was no worksheet until they had a trip to the bathroom.  He responded "W is for worksheet!", very emphatically.    

Christmas Break Winding Down

It's been a pretty good break with the boys.  I managed to take both to the mall yesterday by myself.  I don't think I have done that since we lost the double stroller.  Of course Jimmy rode in the single stroller and Jacob walked.  Both did pretty well, though.  The only thing on my list that I didn't manage to do was Starbucks in the middle of mall.  A line that long was a recipe for disaster.  We stayed up to watch the UFC last night, but I had to turn around and get up for an 8 a.m. therapy appointment.  Fortunately we were both late.  

I need that coffee now.

A nice day

Aside from the layoff, today was a good day.  I saw Melanie for lunch at Panera.  I saw my friend Beth and her husband and boys.  They are in from California and I honestly haven't seen her in years.  We took the boys to House of Bounce and for pizza today.  Jacob was a bit of a pill at the end, but we had a good time.  It was really good to see her - as I have said before, I don't keep in touch with people the way I should.  But seeing her is a reminder that I should try harder.

My husband has left the building...

He is on his way home.  I feel awful... my initial excitement about his interview is tempered by the fact that it was one of his Hail Mary passes, where he applied for something on Monster that isn't something in his field and job is very vague.  Still, it is not even New Year's yet and I can't imagine too many people doing a lot scheduling before the holidays are over completely.  I am totally harping on the guy too - "Did you see this job?," "Did you apply for this?"  I can't seem to help myself.  Maybe I should try harder.  As if autism wasn't enough of a variable to deal with...

Welcome to the ride...

Autistic Kids - The Sibling Problem

"The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings."

An important subject finally sees the light of day...  To my many friends, if you get a chance, please read this.  

A positive sign

DH just checked his e-mail and got an invitation to interview from one of the resumes he sent out.  I am sort of unclear about which job it is, but I feel better that he has one interview lined up.  I think he needed a positive sign as well - tomorrow is his last day!

I feel like poo...

I can't sleep.  I have the cough.  The one I wait for all year that turns into a month long battle with bronchitis.  It's arrived.  Lucky me.  I am coughing so much that I have abandoned my bed so my spouse can get some sleep.  I have Sudafed and cough medicine in me, so it is a mix of being too restless to sleep in a body that's ready to fall down.  Part of me feels like I should wait to go to the doctor until it presents with more symptoms, but the other part just wishes I would hurry up and get there so I can get the requisite drugs and get better.  When your body does the same thing once a year, every year, at roughly the same time, can't they just phone it in?!

Jimmy's fascination with the Boohbah episode entitled Islands continues.  He watched it six times in a row yesterday.  I cannot wait until it falls off the OnDemand rotation.  I can't remember if I mentioned it before, but the week we get back from break, Jimmy finally has his appointment for his psych evaluation.  It's an important step in getting him waivers for respite and other community based services from the state.  Of course the waiting list is years long, but I am thrilled at being closer to getting on it.   

Merry Christmas!!!!

So another one has come and nearly gone.  The boys had a good day, making out like bandits as usual.  I am glad the food fest is over.  If I can ditch my cold, I am back at the gym Thursday.  That was the only negative - that I was under the weather today.  I think the whole job situation is making it go a little faster this year.  The 25th has sort of lived in the shadow of the 28th for the past few weeks.  I want to get the tree down, get my husband through the next three days, and move on to what's next, whatever that is.  I am still hoping that he gets something fairly quickly and much closer to home.  

Jimmy did pretty well.  We went to my mom's, which is the first time we have done that in a while.  Of all the situations that can present themselves to us, taking Jimmy to someone else's home, even my mom's, is the most stressful.  It's a new environment and he wants to check everything out.  If the house isn't child proofed, Lord help us all.  Any kid has that problem, but it is to a much greater degree with Jimmy.  He kept wanting to go into my stepdad's room, which was the one room he was forbidden from entering.  Who can blame him?  It's all trains!!!  We all survived to face another holiday next year.  

I hope everyone had a wonderful Christmas.  Remember, 365 shopping days to the next.  (No, I am not wrong.  It's leap year in 2008!)  

Pantless at McDonalds

We took Jimmy to lunch at McDonalds today. He came out of the tube construction without his pants. We had to send another kid in after them. No, I am not making this up.

Autism is priceless...

An Interview with Jamie Lynn

A Christmas Eve laugh for you...

Good Morning...

I woke up hearing Jimmy downstairs.  He was almost chanting "Presents Now" as he was at the tree unwrapping gifts.  Only the ones for him and his brother, all of which will be rewrapped.  At least he read the tags.

Decisions, decisions...

Which should I buy for Jimmy over the break for his first day back?

On the first day of Christmas...

We are stretching our celebration out into four days this year. Day one was spent with a morning therapy session with a community outing to the mall. He is doing a much better job of walking with an adult, but anytime he has to wait in a line, he goes limp. I won't completely knock improvement, but we aren't ready to be stroller free. And it will be a long time before I can take both out solo. But you have to start somewhere.

Shortly after we arrived home, Uncle Mark arrived. It had been awhile since he had been for a visit, which went fairly well. Except for Jimmy peeing in his cup... he was shifting around as I went to try to get him to the bathroom. Just leaked right there, as he was drinking his medicine (I have never seen anyone move as fast as Mark did to get out of the way.) So Jimmy used his cup... I can feel you cringe, but this is my life. It's why my house doesn't really get clean or neat - I can barely stay ahead of putting out the fires. It's an effort just to get him to keep his pants on at home. Unless you are living it, it is so hard to understand what we go through.

Yeah, I wish that it had been the perfect visit, but I can't knock it - the husband made prime rib for dinner. The food was great. The boys each got a present early as Mark opened his, so Jimmy got his little Padme and Anakin action figures for his Galactic Heroes set. Rosa, their old sitter, dropped by with gifts for them as well. They both were very happy to see her as well.

Tomorrow is another packed day. We have therapy for Jimmy in the morning, a visit with Auntie D in the afternoon, and I am planning to Jacob to a kids church service here in town tomorrow night. Hopefully I can fold some of the clean clothes in the basement and put a dent in the loads of work I have to do over the break. I get the feeling it will be over before I know it.

For those keeping track of the car saga...

The guy who hit my husband and son plead guilty to "Failure to maintain proper control" of his car on Thursday.  He had his case continued once and my husband was subpoenaed to appear.  I think the expectation is that, for misdemeanor traffic offenses, people won't honor the summons and the driver charged gets a lucky break.  When my husband appeared and gave the prosecutor his side of the story, our bad driver decided to plead guilty to max instead of drag it out.  The $250 fine he got was the max, but I wish he could have lost his license.  

A Needed Break...

The holidays are here.  I need a break.  My husband is off with me until Wednesday and then returns to work for his last two days.  It's sort of weird.  I am okay with it at the moment... then I drop and want to breathe into a paper bag a whole lot.  The poor guy has several dozen resumes out there, but I think every HR department in the metro area is sitting on them until New Years.  The worst part is, even when I try, I can't shut up about the whole job thing.  I am just pecking away at him and he hasn't even stopped working.  Heck, he has round three with his back coming up in two weeks.  And I am asking, "How many resumes have you sent today?  Has anyone called?"  Now that I think about it, I hope I don't go completely insane over the next 11 days...

Jimmy decided that he wanted McDonalds for dinner.  He started crying as we drove past it, then started yelling "Chicken and fries, chicken and fries!  McDonalds!!!"  Then he started saying "Now!!!"  Such a basic word, but I have never heard him use it before.  Now... It was such a burst of communication - I was very taken aback.  It was pretty thrilling.  And, yes, he did have a Happy Meal for dinner.    

Autism Study Lends Credence to 'Fever Effect'

"For the first three years of his life, Rene Craft's son, Jackson, communicated primarily through screaming tantrums. He never spoke. He didn't point to things. He didn't make eye contact. He had the classic signs of severe autism.

Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.

"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."

Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement."

This is an interesting article. Thanks to Edwin for sending it to me. I am going to go to bed finally. Maybe I will dream about what he would say to me if he could. He has thoughts, ideas, even a sense of humor and its all locked up inside. I long for a day when it will all come out.

Autism, Welcome to My Inner Circle...

For the longest time now, I have felt like Jimmy was one in 150. It's the statistic, it's the norm now. I figured I probably knew more autistic kids by benefit of being a parent of one - people who we met through autism rather than people we had know having kids with it. Today, that all changed.

We got a Christmas card from a couple we have know for years - someone my husband worked with in the comics industry. Taking you back... he, an incredible creative individual in many ways, got engaged and married this wonderful woman. We hung out a bit, until we started having kids. Then it got a little harder. I think as Jimmy's problems became more obvious, we both started to shut people we had known in the past. I had my friends from Mason, women who having been walking this road with me since the day autism entered my vocabulary. The husband has been sort of walking alone. Both of us found our paths easier than constantly having to explain or apologize for what has happened with our son. I will freely admit that I have shut my own family out to some degree, just because it hurts too much to have explain or defend or justify.

At any rate, eventually they moved away and we didn't stay in touch. In part for the reasons above, but also because regular old life has kept us extremely busy. Today, their family Christmas letter revealed that their son had recently gotten a spectrum diagnosis. The husband is crushed, but I am just shocked. I think maybe we collectively have 50 people that we consider friends between the two of us. Relationships are hard to maintain in adulthood in the best of circumstances. These are the people who we manage and even work at staying in touch with, even if we don't get to see them the way we would like or should. People he knew from his store, people I knew from grad school or my job, people we know now. Of those 50 people, not one had a child with autism or anywhere on the spectrum, save us. Until now.

By my estimation, that isn't 1 in 150. That's 1 in 100. The activist in me would really like to know how many kids it takes to make autism a national emergency, so people are motivated to find a cause, a treatment, and a cure. So kids like mine can speak and interact and live a more normal life. So families don't feel like they have to hide or apologize because their child doesn't act like his or her peers. How many kids and how many families have to suffer before the rest of the world cares or acts? Or does it have to strike everyone's inner circle first?

One more week...

Until Christmas break... I need some rest.

A follow up e-mail...

Someone e-mailed the husband about a job today.  He is still pretty out of it, so he will answer it tomorrow.  It's our first line on something else.  I don't know if its the job for him, but it is a place to start.  I was telling him I just needed someone to respond to feel better.  It worked.

Shot number two has left him in a lot of pain.  Want to know what it looks like?

The left side seemed to have worked with last round, so this focused on the right.

Date Night

We went out tonight.  He took me to see "No Country For Old Men."  I generally like the Coen Brothers, but I am not a fan of this.  Depressing.  But the husband's the one having surgery again tomorrow, so I indulged him.  He is kind of having a run of it - the injuries from the car accident, the job thing...  I think he is healing from the car accident, so it really isn't as much of an issue.  But to have that and the job thing and having it all come to bear during the holidays is a bit much for anyone.  He still is cranking out the resumes, but he hasn't gotten a call for an interview yet.  It's only been a week and a half, but I can't seem to get that through my head.  

My sister is begging me to look at it like a three month paid vacation - before I make myself completely mad.  She is probably right.  

I would say my sister is better at rolling with the punches than I am, but I don't think that is entirely correct.  She has long said she could not handle the situation I have with Jimmy - having to advocate, the unknown of it all.  It's never easy, but it is what I am used to.  Her husband got laid off after 9/11, not once or twice, but three times.  She is used to that, that uncertainty, being stressed out about when he was going to have a reason to get off the couch (I say that jokingly - my brother-in-law is a great guy!) or how the bills were going to get paid.  Heck, they went through foreclosure.  Money stuff makes me crazy.  Maybe it's true - God gives us what we can handle.

I just hope the Almighty helps with the whole interview thing, because I think He may have sorely misjudged me...

Never anger PETA

Oh my...

Freaking hysterical...

I was just checking my IP addresses to see who has been reading and found that my Jif post was read by the J.M. Smucker Company.  Hope you didn't mind the shout out.  If you want to send me a year's worth of peanut butter, just e-mail me!

Too funny!

A sick kid...

Jacob is running a fever, which means I have a day off tomorrow.  It's bad timing, with a lot going on at work and having to be off Wednesday afternoon.  These things happen, I guess.  But it sucks.

A cute photo from summer....

Buying stock in Jif

Jimmy ate a cubed peanut butter sandwich today without any prompting whatsoever.  His therapist got it ready and sat it in front of him to start working on the food program and he just dove in!!!

Meeting with Jimmy's Teacher

I had my first lengthy one-on-one meeting with Jimmy's teacher. When you are dealing with a cast of a dozen characters in helping and educating your son, direct face time is scarse. It is also the most valuable thing you can have.

Allison is amazing. It is her first year teaching, yet that doesn't scare me. I think initially she was overwhelmed, but this is now her life and passion. I honestly think she wouldn't have it any other way. It can be so hard to be Jimmy's mom sometimes - I carried that boy inside me for nine months. I have loved him more fiercely than I have loved anyone in my life. I need to know the people who I turn him over too for so much of the day love and believe in him.

I have always felt that Mr. Booty (the instructional assistant) believes him and now I know Allison does too. I am thrilled. She is anxious to continue consult and working with his therapists, which I think is great. I walked out of there for the first time this year really confident in his school situation. That helps me get through everything else I have to do with my day personally and professionally. It's huge.

Hey...T...

Why is your phone always busy?

How to spend your snowy evening? Posting your husband's resume on hotjobs.com, careerbuilder.com, and monster.com. Am I good or what?

Please let there be a two hour delay tomorrow morning!

An odd side effect...

We have noticed something odd.  We tried Strattera for several months with Jimmy earlier this summer and fall.  We had a marked increase in his fecal fixation.  We stopped it a few weeks ago and, well, we haven't really had the problem since.  Kind of nice, I must say.  

I am getting ready to try something else in terms of medication.  I figure the upcoming Christmas break will give us the opportunity to try something new.  I just need to get into the doctor again. Anything to get him less hyper and more focused.  When he is more focused, he talks more, he is more engaged, and he is less prone to tantrums.  There is no magic pill for autism, but I am still hoping to come across a medication to help some of the more trying aspects of his behavior.

Sigh.  If there was only a magic pill...

FAPT Today

Services were continued.  Thank God for small favors.  The school staff sent in this glowing report of progress being made without any data to support it.  Our therapist provided actual data demonstrating regression over the past several months.  I am so frustrated with the school system - I want to hear good things about how Jimmy is doing, but you can't ignore the problems and the lack of progress in some areas.  

The speech therapist has asked that the goals be modified - they were great goals, but there is no evidence of data collection in these new ones and the benchmarks have been set too low.  The reinforcement plan in the last IEP wasn't followed.  I still have not seen a BIP from either the consult or the school.  We haven't addressed the gym issue for the winter.  Looks like I get to call an IEP meeting.  

Happy Holidays!

Season's Greetings from the boys...

Waiting for the Sunday paper...

Jimmy went to McLean Bible Church for respite today.  He has such a great time there and the people in the ministry are just so wonderful to us.  I ran into Melanie briefly, but she was working in another room.  I went to lunch with my friend Amy.  Jim took Jacob to the Christmas parade and sat with a friend of mine from work and her son.  I think it was a fairly nice day all around. 

DH's job search kicks off in earnest tomorrow, with the arrival of the Sunday paper.  I think I applied for about 8-10 jobs when I did my job search a year and a half ago.  Nine or ten resumes yield four invitations to interview, two interviews, and two job offers. I hope my husband's goes as well.  He is already up to five jobs applied for in five days. 

What a year - the car accident, his injury, and now this...  I am more than a bit overwhelmed at this point.  I know he is too.  Keep good thoughts for us.  And if you have any jobs in desktop publishing or need someone who know Quark, Illustrator, InDesign, etc..., send me an e-mail.  I know a guy...

  

An Update...

My husband has already applied for five jobs.  That should cheer me, and I do appreciate that he is throwing himself into this, but I just am in knots about him losing his job.  I know he is as well, so I shouldn't be complaining, but it's just awful.  

A New Lullaby

Jimmy has taken to falling asleep on the papasan chair in my office.  He likes us to turn on Bjork on iTunes and have the visualizer on, with it's little light show.  All is Full of Love is his favorite.

It Wasn't a Bad Dream...

My husband still has a layoff notice.  We are kind of trying to figure out what to do next.  I also have FAPT on Monday.  I am going to beg that we don't reduce Jimmy's services this cycle as I don't think I could deal with another major change in our lives right now.

My Husband Has Been Laid Off

He got his pink slip today.  His last day is December 28th.  His job at USA Today was outsourced to Florida.  It could be worse - it could have been India.  I guess the rupee is doing better than the green back these days.  He has an English degree and extensive desktop publishing, layout and design experience as well as Microsoft A+ (he is working on his Net+ as well.)  So if you know anyone hiring...

I am freaking devastated.  But we have planned well and we should land on our feet.

Thanksgiving Weekend is Over

The shopping is over.  For the most part - I think I have one toy left to get for each of them. Now to put up the tree and enjoy the rest of the holiday season.  We went out with my mom yesterday - no one ran off or got naked in the play area outside of JCPenney.  We bought a second baby for Mr. Rahr (light green dinosaur), only to lose him too.  If you are going to Build a Bear and can pick one up for him, it's $5.22 (including tax.)  We can't get through a mall trip without losing him.  I hope everyone had a wonderful Thanksgiving.

The Hard Sell

Dell is brilliant. Mixed martial arts is a big thing in this house, so this spot is so fun.

Melanie Saves the Day

Well, my mom did get stuck working, but we still managed to get out of the house.  My friend Melanie came to the rescue by helping me take the boys to House of Bounce, one of those inflatable moon bounce party places.   We spent an hour there, running around, jumping, and sliding down these huge indoor moon bounces.  A great way to burn off energy on a cold day.  We had lunch at Applebee's, which provoked Jimmy because he wanted to go to Walmart next door. So we went there after lunch.  Melanie is a huge help and an incredible friend.

Oh, big autism related news from yesterday - we solved our seat belt problem.  We found these Angel Guard clips that block the release button on the seat belt.  We used them for the first time yesterday.  We sat in traffic trying to get past the American Legion Bridge for over an hour and no one got out of their seats.  I am using it on both boys!!!  Best $20 I have ever spent!!!!  

Tomorrow is the belated shopping with my mom.  I so look forward to that.  She is the Queen of the Mall.  My foot injury is making me crazy, she hurt her knee, and we are both still going!

Happy Thanksgiving!

Jimmy playing in the backyard of his grandparents.  He loved the sound of the wind blowing through the trees.

Jacob playing... with that damn purple dinosaur on TV.  I can't stand Barney!

I hope everyone had a wonderful day.  

No Black Friday for me...

My mom forgot to submit a leave slip for Black Friday. Her boss is being a prick, so now she can't go. Hardly the end of the world. My husband, however, is working too, so I am on my own with the kids. "On my own" means home alone. With both my kids at this point being runners to some degree, I can't go out with both of them. Jimmy ran on me the other night when I was trying to leave the gym. Jacob can be so disobedient these days, I am not sure I can try with him. My October outing to the Fall Festival didn't go badly, but certainly didn't go well either. I was pushing Jimmy around - Jacob ran once, but the rest of the time he was going "Don't you know who I am? I am the Juggernaut, bitch!" See the third X-Men film for the reference. Great - one with autism and the other with Tourette's! Joy! My life with these kids feels a little like a prison. I know many moms have that experience, but I just don't think they do with children this age.

I shouldn't be so negative, but I am really moody today. I hate the holidays.

A Baby Picture to Share...

From day one, before the word autism entered my daily vocabulary.

Happy Birthday Becky...

Mi hermana is another year older. She's a great girl - most likely to win the lottery simply because in life she is due a break. She just is... She is witty and bold in ways I am not. Easily one of the strongest women I know. I love her more than life itself.

It's okay Becky, just grab the Kleenex.

I love you. Happy birthday, sis...

Looking forward to a very short week.

Disturbing video

I can't remember what country this is, I want to say Serbia, but this video breaks my heart. For kids with disabilities like Jimmy (autism, MR, etc...), they are thrown away to the most horrific of institutional fates.

Yes, I am still here...

For a four day week, last week seemed like an eternity. The week was very long. Next week is only two and a half day, but it packed full as well. I am looking forward to having four days off over Thanksgiving. I have already broken out the Christmas cards to write, but I can't get too far until we get a photos of the boys to include.

Jimmy had a pretty good week. I got some nice notes from his teacher about how verbal he is, how much more engaged he is. I am pretty happy with his teacher this year, though I have had a rougher time getting the therapists and school on the same page. It's partly scheduling, but I think there is a certain amount of bureacracy on both sides. It gets frustrating.

Jacob continues to be Jacob. I wonder when this whole bad seed thing will pass - he makes me crazy and I really struggle with the disciplinary aspect. It is very hard for me to do, not so much as having two sets of rules, but two different approaches to negative behavior. I just feel like I can't win and I can't get it right with this kid.

Losing Jimmy... and the Baddest Man on the Planet

Well, this morning started out badly... I briefly lost Jimmy at church. We arrived for his respite program and waited in a long line of other parents. Jacob was entertained by a service dog named Mason, but Jimmy was out of control, not wanting to wait. I put him on my shoulders, toted him around, held his hand. Anything to keep him entertained. When we arrived at the check in desk, he bolted to the back classroom area. Someone said, "He'll be fine." I paid my fee and went back to find that he had vanished into thin air. I yelled for him, yelled to see if anyone had him, and got no response. I looked at the back door - which immediately has another door to the parking lot. I was running on back and forth, calling his name and crying. Someone ran out the back to the parking deck. No sign of him. Finally he was found in a classroom. I have officially lost both my children at one point or another and it is truly the worst feeling I have ever known. I held him so tightly when I got ahold of him. I am starting to realize though that I am so overwhelmed by the both of them together that it limits where I can go and what I can do. Jacob will improve with age, but the next few years will be rough.

Tonight finished with an MMA event called the Baddest Man on the Planet. You could call it one of the craziest nights of my life. My husband writes for this website that covers mixed martial arts (think UFC, Randy Couture, Chuck Liddell) and we got free tickets to this local event. A bunch of local guys came for the fight. The fighter that my husband interviewed earlier this week Matt, was on the card. Matt's opponent didn't show up for the fight, so they put out a call among the dojos in the back to see if anyone at 205 was willing to fight. There wasn't, so he bounced out of the back room to check with Steve, on of the guys who came to the show with us. Steve trains MMA and has had some amateur fights/sparring matches. It was an amateur event, so Steve thought he should consider it. He pulled Steve away from buying a hot dog and took him back to the promoter.

Next thing you know, he is taking the the fight. They give him gear to use, The other guy from the board Chivo corners him, the whole nine yards. They introduce him with an acknowledgement of pulling him out of the crowd essentially, so the crowd was definitely pro-Steve. The trade one or two shots, Steve threw this great kick, and after that it is all a blur.

He got KOed and he says he can't move. At an event like that, they put him on the board and load him on the ambulance to the ER as a precaution. I was sort of bummed that he was fighting, because I was looking forward to talking to him between fights. Turned out we had plenty of time to chat between x-rays. It all worked out. He's fine, though, and on his way home. His wife has even forgiven him for doing it, I think.

It was sort of insane all the way around. But it was really nice to finally meet Steve and Chivo as well. A lot of fun. This was the second time I have seen someone I know step into the ring. But after KC and now this, I don't think I can ever watch another e-friend step into the ring. My stomach is still in knots.

At least he is going to have a great story for work on Tuesday.

I started reading Jenny McCarthy's book...

In earnest... I could make a joke like "Who knew she was literate?", but that would be primarily because her body was good enough for the airbrushed glory that is Playboy. They couldn't airbrush enough of mine away to make that work. But one of the introductions make an interesting comment. When your kid is diagnosed with cancer, people bring casseroles and hugs. When it is autism, they sort of turn away from you in the grocery store and quit calling for playdates. I know it is a very bitter commentary, but when I read it I realized that I felt much the same way. And so many more kids are autistic.

I think what is most striking is that he son's onset was marked by seizures, a much more dramatic arrival than Jimmy's autistic beginnings. Each story seems to be a little different. I'll keep you updated as the book goes.

Parent/Teacher Conferences

Well, I went to Jimmy's conference. They have actually moved him back on an academic track, starting him in the first grade math and reading books. He's gets one-on-one instruction, so he is doing pretty well. His PALS scores are sort of funny. There are three elements to the score - spelling, pre-primer word list, and letter sounds. Even though I have 100% spelling tests on the fridge from last year, he refused to spell anything for the assessment. He got 15 out of 20 on the pre-primer word list and 25 on the letter sounds - he wouldn't give the sound for W, even though he has done that before as well. He got 40. The fall benchmark was 39. Without performing one whole section of the test, he met the benchmark.

They actually administered the primer, 1st, and 2nd grade word lists. He got 15 primer, 16 first, and 9 second grade words correct as well on the assessment, all out of 20. Cognitively my kid is all there. It's just getting it out. We are also amending his IEP for his speech goals and the accommodations to include a weighted vest.

I have to go call out sick for tomorrow. I have almost completely lost my voice and I am running a fever. When your job is completely predicated on your ability to speak, losing your voice is sort of a problem. Getting through today was a major chore.

A new Jimmy pic for you... from a recent therapy outing to McDonald's.

Sleep at last..

After two days of him balking at his sleep medication, I finally got Jimmy to take it. He is fast asleep... which is good because I am sick and need the rest now too. Now if I can get Jacob off...

I finally got ahold of someone at the CSB. Jimmy's psych eval is going to likely cost about $500, an evaluation that needs to be completed before we get him on the DD Waivers list. I am going to apply for a community grant for the funds. It's absurd that it costs money to get on a list from which it will take years to see any services or results. I feel like life is about jumping through hoops and it always will be.

Up All Night

The local police have had a helicopter hovering over our neighborhood for the past hour. Why does this stuff go down at night, never in broad daylight. Oh, and we have morning session tomorrow.

Ugh.

Interesting Statistics

"Department of Education statistics indicate that the number of students with autism rose steadily, from about 42,500 in 1997 to nearly 225,000 in 2006. Meanwhile, the number of students counted as mentally retarded declined from about 603,000 to about 523,000.

CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.

Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)

Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.

"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.

Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90% of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50% of that money on potential environmental triggers, Goldstein said."

Sorry to leave you hanging...

Let's see... the boys went trick or treating on Wednesday. It was a mixed success - we went across town to stop at my assistant's house and then back to our own neighborhood. Jimmy did well for two house and then was brought home after melting down at some of the decorations. Jacob brought back a ton of candy in less than an hour. Thursday we had session and did our outing at Chick-fil-a, where we pissed off some guy when Jimmy dived over the back of the booth to get to his kids fries. He was really terse at first (which intellectually I understand) and seemed to calm down as I explained that he was autistic. It sort of set me off for a while, though - it is difficult to explain it all the time. I wanted to scream at him that he should be grateful that his kids were healthy and normal. I didn't, of course, but it wears on you.

Last night was respite at McLean Bible Church - I really needed it.

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.