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Good Morning America!

Because of our support of HB1940, we developed a relationship with Autism Speaks.  The organization published my blog post (My Day at the GA) on their website, and our names were passed along to ABC News as they started working on a piece for Autism Speaks’ 10th birthday.  As I responded to the hey-can-you-do-an-interview e-mail from Autism Speaks, I thought for sure it was not going to happen…but it’s nice to be considered.  Seriously, my family is not that interesting.

A couple days later I got an e-mail from an ABC producer.  “WTF have I gotten us into?” was all that went through my mind.

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Twenty-four hours later, our house was spick and span, and the next day a field crew descended on our home.  Thing 1 flipped out when they first arrived, but he calmed down while my husband and I sat for our interview.  We were asked questions about how we met, how long we’ve been married, when did we know our children had autism, how “devastated” were we when Thing 2 was diagnosed, what is applied behavioral analysis, why does it cost so much, what has ABA done for our boys, why should Virginians support an expansion of the autism insurance mandate, and so on.  We answered questions for about an hour, and I had butterflies fluttering in my stomach the entire time.  We explained that ABA has been a game-changer for our family and gave Thing 1 a voice.  It’s expensive because highly specialized one-on-one therapy usually is, and you pay for what you get.  It’s important that Virginians support HB1940 because when it comes to the care of persons with autism, you either pay now or later.  We prefer to invest in our boys now so they can learn how to make friends, survive school, and one day live as independently as possible.  We also pointed out that having an age cap tied to autism insurance benefits is discriminatory.

The producer using the term “devastated” to describe going through the diagnosis process twice bothered me.  Autism is not a death sentence, and while I certainly don’t want to see my children struggle to communicate, make friends, and gain acceptance, I get to tuck them in, read them stories, and smother them with kisses every day.  That is a luxury, not a devastation.

The field producer does a lot of work for NPR and also published a short article with our interview here.

Once our interview was done, the boys came downstairs and were followed around by the camera and sound guys for two hours.  They shot video of the boys playing games and trains, eating a snack, swinging outside, and reading a book.

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It was a very long day.

One week went by, then another.  We weren’t sure if the footage was chopped, if it was being saved for Autism Awareness Month, or if this story was going to air at all.

February 25 is the 10-year anniversary of the founding of Autism Speaks, and Good Morning America celebrated the date with an interview with Bob and Suzanne Wright, their daughter and grandson, and US for your viewing pleasure at 1:30 into the segment.

Don’t blink, though, or you’ll miss it.  Some people get fifteen minutes of fame.  I’m happy with our 10 seconds.

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Measles is the New Ebola

Once again, we have media-generated hysteria over a viral outbreak.  Someone cue Dustin Hoffman and Cuba Gooding, Jr.’s tears.

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There is no debating that vaccines save lives.  The Department of Health and Human Services tells us that we can protect our children from more diseases than ever before; vaccines are subjected to long, careful reviews by scientists, doctors, and healthcare professionals; immunizations protect the people you love most; those vaccines save families time and money because non-vaccinated children can be denied attendance at schools and daycare; and immunization protects future generations, evidenced by the eradication of smallpox.  All positive things.

Having two children on the spectrum, I heard, like everyone else, the vaccines-cause-autism claim.  Obviously, I did not buy into this link because my older boys got all immunizations in accordance with the CDC’s schedule, and the original study has been debunked over and over again.

When I was pregnant with Thing 3, I started wondering about what I could do differently.  I have no idea what causes autism–nor does anyone else on this planet apparently–but what could I possibly do differently during pregnancy and his infancy to abate the risk?  The answer may be absolutely nothing.  My husband and I started thinking about the timeline of Thing 1’s progression and regression.  He hit his milestones through 14-15 months until we had a series of small events: MMR shot at 15-months old, anesthesia and ear tubes at 16-months, and strep throat around 20-months.  Could it have been a combination of those environmental factors that caused a regression of all language and self-help skills?

But what does that matter if Thing 2 did not have those issues but also has autism?  Is autism inevitable?

Kind of a tangent, but I started researching PANDAS, which stands for Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus. Kids with PANDAS or PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) show OCD behaviors, moodiness, anxiety, and other autism-like symptoms.  The theory is that an infection–whether strep, Lyme, flu, or another bug–led to antibodies that mistakenly attack the part of the brain that controls behavior, and doctors are only starting to study this phenomenon.  I could not find enough information blaming PANS for language regression, so investigating a PANS diagnosis for my kids is probably not appropriate…but it led me to a bigger question wondering if something weird was happening with the boys’ immune systems.

So that goes back to the vaccine issue.  I am not a hipster, not anti-authority.  While the benefits of vaccination outweigh the likelihood of an adverse reaction, it is my responsibility as a parent to know what is injected into my children and how it was made.  I learned that vaccines are not an all-or-nothing argument, and those who question the preservatives in the MMR shot or opt for a different vaccine schedule do not deserve such ridiculous vilification on social media.

I do want my children protected from diseases like polio and measles.  Through long, sometimes tedious hours of research and investigating the vaccines myself (does anyone bother to request and actually read the informational inserts that come with those shots?), I settled on a modified version of Dr. Sears’ staggered vaccine schedule for Thing 3.  His Vaccine Book is enlightening and not anti-vaccine.  He offers numerous articles on safe vaccination here.  I am now a Dr. Sears groupie.

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Here is the immunization schedule we settled on for Thing 3, with the blessing of our pediatrician.  I’m grateful she respected our wishes and was open to having a discussion with me about the pros and cons of each shot.

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If you are unsure or have questions about vaccines, I encourage you to do some research, talk to your pediatrician, check out The Vaccine Book, read the information included with those vaccines–just like you hopefully read the warnings and information that come with any medication.  And please use a little common sense instead of blindly following the TV’s talking heads.

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Miles to Go Before I Sleep

This week I feel like we are trudging through thick snow, making little progress.  Never mind it’s sunny and a mild February.

The General Assembly session is winding down, and our much anticipated bills to expand autism insurance coverage in Virginia are still sitting in committee.  Media outlets across the state are now starting to pay attention to HB1940 and SB1457, and yesterday the story appeared in Hampton Roads here.  The Senate was supposed to hear the bill on Monday, but SB1457 was pulled off the docket and postponed.

Patience may be a virtue, but I am not feeling virtuous anymore.  Thing 1 cannot wait another year for this debate.

Last night I reached out to a few well-connected friends…because it’s not what you know; it’s who you know.  A couple awesome ladies put me in touch with two news reporters.  After e-mails, text messages, and a phone call this morning, I think NBC12 will be at the House Commerce & Labor meeting tomorrow, where HB1940 will hopefully be up for a vote.  And the reporter wants to interview us.  Aye aye aye.

In the meantime, I turned on The Story of Us (thank you, History Channel) for my students today and hit the e-mails hard.  Here’s my letter to every single member of the Senate Commerce & Labor Committee:

Dear Sirs and Madam:
I am writing members of the Commerce & Labor Committee, urging you to end the age cap on Virginia’s mandated insurance coverage of autism spectrum disorders.  I live in Midlothian, and I have three sons, ages 7, 4, and 9 months.  My oldest sons both have autism.  SB1457 will reach your committee meeting soon and impacts thousands of Virginia families.  Those families are sick and tired of begging the Commonwealth for scraps.  Today it is more difficult for families like mine to secure EDCD waiver services or a spot on the ID/DD wait list.  The Individual Family and Support Program funds are a joke, and this January only 600 requests were granted out of 3300 applications.  Because of our denial, my oldest son will not receive occupational therapy this year because we cannot afford to pay out of pocket for the service.
If my children were diagnosed with diabetes or multiple sclerosis and our private insurance refused to cover their medically-necessary treatment after age 6, people would be horrified and outraged.  Why is there not the same demand to protect children with autism?  Contrary to what the current law implies, autism does not go away when a child turns 7, or 10, or 21.
Applied Behavior Analysis is the most common evidence-based therapy for children with autism.  Both my boys receive ABA, and it is because of this therapy that my nonverbal oldest son learned how to feed himself, potty train, make eye contact and greet people, answer to his name, gain academic skills necessary to transition to public school… I could go on and on.  ABA saved us.  He turned 7 last summer and aged out of required insurance coverage.  We now rely on Medicaid to pay for M’s 6 hours of weekly ABA therapy.  My husband and I–both college graduates, employed full-time, with a household income over $100,000–rely on M’s Medicaid to pay for what private insurance should be required to cover.  The current system forces regular able-bodied middle-class families to rely on the Commonwealth for financial assistance, and it is within your power to change that.
ABA is expensive, but the actual impact on insurance premiums in minimal.  The State Corporation Commission reported that coverage of autism spectrum disorders led to a $2.66 per year per member increase in premiums in 2013.  In states that have no age cap, premiums raised on average less than $0.50 per month per member.  The cost of a couple Starbucks lattes will save families and the state between $1-2 MILLION over an autistic person’s lifetime.  The resources available to Virginia families to afford meaningful and medically-necessary therapy for children with autism is extremely limited, and the absence of insurance coverage forces many families to pay out of pocket, anywhere between $25,000-$50,000 for services.
Please vote YES for SB1457.  Thanks so much for your time.
I sent the same message to members of the House C&L Committee.  Find your delegate’s and senator’s names, and make a call or send an e-mail on behalf of my family and every Virginian with autism right now!