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Autism Awareness Month

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Welcome to April! This is one of my favorite times of the year…winter is over, my youngest son and husband have birthdays to celebrate, and we start the final marking period at school before summer vacation. It’s the home stretch! April is also the month when the whole world lights up blue for autism awareness. Read my thoughts on why we need more than just awareness on the Richmond Moms Blog here.

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A Call to Action!

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UPDATE 1/20/17… Thank you so much for sharing this post and joining the movement to #CrushTheCap in Virginia. There were very disappointing developments, and here is the latest message from Virginia Autism Project: “The Autism Insurance Initiative (HB1995), sponsored by Delegate Greason, has run into insurmountable opposition in the 2017 House of Delegates. This upsetting situation presents us with no viable solution to keep our bill alive in this session. We are extremely disappointed and sad for the many Virginia families who have a loved one on the autism spectrum and who struggle to get their children medically prescribed services they so desperately need. Those of us that have worked on this issue for many years are not surprised that it will take multiple attempts to pass our bill lifting the age cap. The Virginia Autism Project leadership remains committed to ending this injustice. Providing insurance coverage for our children who have a diagnosis of Autism from 2-10 years of age and excluding all others is unacceptable. Virginia families deserve better. Please consider this a YEAR-LONG CALL TO ACTION. VAP, along with our friends at Autism Speaks, will continue to reach out to educate and lobby those we elect and send to Richmond in an effort to ensure all families’ voices are heard. Please send an email or letter to your Virginia Senator and Delegate and tell them that HB1995 was obstructed this year, but YOU EXPECT THEIR SUPPORT IN 2018 TO END THIS DISCRIMINATION. Also, please send a note of thanks to Delegate Greason (DelTGreason@house.virginia.gov) for his unwavering support.”

House Bill No. 1995 was introduced in Virginia’s General Assembly this month to lift the age cap on mandated insurance coverage for autism spectrum disorder. Coverage in our state is currently capped at age 10. Two years ago, a nearly identical bill was introduced and struggled to survive the House and Senate Commerce & Labor Committees. When the session ended, the age limit was raised from 6 to 10…baby steps, but an improvement nonetheless. We all know autism does not magically disappear when a child reaches his 11th birthday. All individuals impacted by autism deserve the services prescribed by medical professionals, regardless of age, including assessments and behavioral, speech, and occupational therapy. These therapies (especially ABA) are life-changing for my family. We went from asking ourselves, “What if he never talks?” to hearing Thing 1 sing songs, read books, and ask for help when needed. Why? Because of intensive ABA. Thing 2 started Kindergarten at our home elementary school and is completing work on grade level. Why? Because of intensive ABA. We are excited to enroll Thing 3 in the same early education autism program this summer knowing this evidence-based treatment will make a meaningful difference in learning language, social skills, emotional well-being, and the ability to generalize those skills across different settings.

So why should YOU support HB1995?

According to VCU’s Autism Center for Excellence, the average age of autism diagnosis in Virginia is between six and seven years of age, and the GW Autism Institute‘s findings indicate that adolescence is a time of tremendous brain reorganization and plasticity. Adolescents and young adults greatly benefit from treatment, and there are opportunities to better the lives of individuals at ALL life stages. Those opportunities should not be denied because our great Commonwealth has stamped an expiration date on our children!

Covering evidence-based therapy is also fiscally responsible. The Virginia State Corporation Commission reports annually to the General Assembly regarding the financial impact of mandated health insurance benefits.

  • The 2014 average claim cost per member related to mandated coverage of ASD is $2.66 per year (22 cents per month).
  • The 2015 average claim cost per member related to mandated coverage of ASD is $3.50 per year (29 cents per month).

Actual claims experience from states that have at least three years of autism insurance coverage or no age restrictions indicate an average premium impact of less than 50 cents per member per month — about the cost of a postage stamp! Yet cost-benefit analysis shows that if children with autism receive intensive services at a young age, the overall savings are significant. The provision of intensive services (like ABA) can result in an estimated cost savings ranging from $187,000 to $203,000 per child ages 3-22 years, and a total lifetime savings of $1-2 million dollars.

Would you be willing to pay the price of a postage stamp to save $2,000,000? To make a positive impact the lives of children and adolescents with autism? If you live in Virginia, it is imperative that you contact your state legislators to support meaningful autism insurance reform. To find contact information for your state delegate and senator, click here. Also call, e-mail, or visit members of the House Commerce & Labor Subcommittee #1 and urge them to vote YES on HB1995. Feel free to join me and Thing 1 at the General Assembly on January 31 for Developmental Disability Advocacy Day.

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Be loud. Be heard. Be the change!

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Igniting the Flame

If you follow this blog, you know I often write about life as an autism mom. This year, our youngest son was also diagnosed with autism after we noticed his regression of skills similar to our oldest child. By 12-15 months, Thing 3 was “talking” on the phone, playing imaginatively, pointing to objects, initiating games like peek-a-boo and patty-cake. All that stopped by 18 months and was replaced with toe walking, repetitive movements around the room, fixation with his hands and fingers, and silence…no sounds coming from our baby except epic meltdowns nightly at dinnertime. In July, we finally had our appointment with the Transdisciplinary Autism Assessment Clinic at Commonwealth Autism. In addition to administering the ADOS (Autism Diagnostic Observation Schedule–an assessment of communication, social interaction, and play), the team included occupational and speech therapists’ assessments. It was a long morning of questions and observations, but we knew what the findings would be.

So here we are, raising three boys with moderate autism.

Part of me was sad. Regressive autism is crushing–to see your child struggle with actions and words that used to be easy. On the other hand, life with autism is normal to us. Around the same time Thing 3’s language and social engagement vanished, there was a workshop on regression sponsored by the National Institute of Mental Health in Maryland that focused on the development of infant siblings of autistic children, but overall the National Institutes of Health grapple to understand the neurological changes, immune responses, and other physiological causes of regression. In an attempt to find answers, our family was evaluated by a genetics team at the University of Virginia. They completed a microarray analysis, which detects possible chromosomal abnormalities, and that revealed nothing out of the ordinary. The next test to be completed is called a DNA extraction using blood samples from Thing 1, me, and my husband. This testing did not exist when we took Thing 1 to a geneticist six years ago, so we are excited to see what it may reveal.

Autism research becomes a touchy subject when people argue for neurodiversity versus “curing” disorders. I accept my children for who they are and wish the world understood their struggles and respected their dignity…but I would be a liar if I didn’t say I would love to take away those struggles. In an attempt to contribute to the body of research, our family signed up for SPARK. SPARK is an online research partnership involving 50,000 individuals with autism and their families attempting to accelerate research, coordinate those findings among medical institutions, and advance the understanding of autism. Over 20 medical schools have joined SPARK, and SPARK provides those researchers with medical and genetic information from participants like us. When we signed up, we completed questionnaires about ourselves and our children, then sent SPARK our saliva samples.

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Special needs parenting cannot only be about IEP battles, inspirational quotes, and memes about coffee consumption. While those are all very true, I want to know WHY my children have autism. I know about ASD and ABA, IEP’s and IDEA, BIP, plenty of SIB’s, IFSP’s, ADHD, OT, SLP, and the whole alphabet soup. But why does this condition impact all three of my children? Perhaps new research will lead to custom interventions and therapies tailored to each child. Will new research explain the systemic medical problems related to autism, like immune deficiencies, seizures, and gastrointestinal issues, and therefore lead to better treatments? There simply is not enough research or funding to answer these questions, and SPARK looks to bridge that gap.

I was shocked to hear many of my friends in the autism community never heard of SPARK. I hope you share this information with other families affected by autism and be the spark that ignites a flame in the lives of others.

 

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Diagnosis Day… Now What?

Recently a mom contacted me the day her 3-year-old son was diagnosed with autism. She needed an outlet, a virtual shoulder to cry on maybe, and someone to explain where to go next. Talking with this mom put me right back in our own diagnosis day for Thing 1. Honestly, it was difficult to confront those feelings again–stunned at missing red flags sooner; confusion over what services are needed, where to find them, how to afford them; guilt because it must have been something I did or didn’t do that caused this; frustration trying to understand the spectrum; relief to finally have a diagnosis; fear for my children growing up in a cruel world not made for their sensory and communication needs; and anger. Anger at everyone and everything.

So…your child is diagnosed with autism. Now what? Here are my observations and suggestions on your next steps.

First, there is a grieving process, so give yourself time to wrap your head about what ASD means for your child. Talk to your spouse. Talk to your pastor. Find another parent to vent to. Whatever you do, do not wallow and stew in your anger, fear, and sadness. I could not tell anyone about the diagnosis without crying. I made other people cry with my crying, and then I felt guilty for that! But it’s okay to cry. You will go through the range of emotions, and then you’ll pick yourself up and prepare to kick ass.

Second, know your insurance plan inside and out. Figure out what therapies are covered and the coverage amounts. Learn about the autism insurance mandate in your state. Make sure you are taking advantage of all available coverage. Having mandated coverage in our state was a game-changer for our family because it afforded us significantly better services than our county’s early intervention or early childhood special education programs.

Third, learn about Medicaid waivers. In Virginia, we have EDCD and ID/DD waivers. Regardless of where you live, qualifying for waiver services requires tedious screenings (and, more frequently and unfortunately, appeals and more screenings). Your local Autism Society of America chapter is the go-to source for understanding waivers. Most offer workshops and many other resources. A couple weeks after Thing 1’s diagnosis, I called the Autism Society of Central Virginia and left a message asking about waiver workshops. Since I just missed their last one, the ASCV president called back and spent almost two hours with me on the phone, telling me everything I needed to know. That was a huge breakthrough because after that conversation, I had a plan.

Fourth and finally, join a support network. You can find this in a Facebook group, joining the Autism Society, going to a TACA coffee talk. Commiserate with other parents, ask questions, share recommendations, stay connected. Me, I started following blogs, and some of my favorites are:

Our diagnosis and psychological report for Thing 1 came with a massive to-do list. The psychologist recommended we consult with a geneticist, neurologist, and gastrointestinal specialist; increase the frequency of Thing 1’s speech and occupational therapy; and get our son intensive ABA services. We spent time lingering on wait lists, and it took 3 months to increase speech therapy, 10 months to start in-home ABA, and years to visit all the medical specialists. Sometimes it is difficult to see the forest through the trees, but we have much to be grateful for five years into this autism journey, especially the ways our family is loved and accepted.  Yesterday we threw a big birthday party for our older boys, and eleven little kids and their families showed up to party with us.  It was heartwarming to see all these neurotypical kids play with our boys and sing “Happy Birthday.” And that’s what it’s all about, right? Kids enjoying their childhood, making friends, learning, growing, and having fun. It’s difficult to see that light and feel hopeful on diagnosis day, but I promise you will get there. Water_Birthday Find additional resources here:

First 100 Days Kit–Autism Speaks

Handy Handouts

Introduction to Autism–TACA

The Out-of-Sync Child: Great book!

Wrightslaw Special Education Law & Advocacy

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Judging Fish

This post was originally written for Autism Speaks, which you can see on their website here.

The autism world is filled with acronyms, metaphors, and symbols. ABA, IFSP, IEP, SIB, puzzle pieces, umbrellas, and this insight from Mr. Einstein to name a few: “Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

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Preach, Albert.  Want to know what I REALLY think our symbols should be?

Blood, sweat, and tears.

My kids are learning how to function in a world that’s not exactly made to fit their senses or sensibilities.  Achieving acceptance is about having access to services and opportunities they need to effect that learning.  That said, I’ve been reflecting on how doors opened for us and appreciating the hard work of strangers that went into it.

Thing 1 was diagnosed with autism in 2010.  A few months after diagnosis day, we were quietly asked to leave the preschool he attended.  I will never forget the director’s words.  “He’s not potty trained, so he can’t graduate to the next classroom.  I don’t think your son is getting anything out of our program anyway.”  Once we figured out the lay of the land, what we really wanted for our son–a specialized day program for children with autism and intensive behavioral support–was financially unattainable in the state of Virginia.  This was our reality: Thing 1 was not speaking, meltdowns were daily, and by the time he turned five, the only educational option offered was a self-contained kindergarten class.

That was a low point.  Autism was kicking butt and holding my son hostage.

What I did not realize was strangers were shedding blood, sweat, and tears FOR YEARS to make services accessible to all Virginians.  I imagine these guys marching into the General Assembly year after year like Wyatt Earp in Tombstone, never giving up… “You tell them I’m coming, and hell’s coming with me.”

Seriously, who does not love that movie?

To call Virginia’s autism insurance mandate a game changer (recently expanded to cover children through age 10) is an understatement for our family.  It was by no means a free ride, but at least we had a fighting chance.  Thanks to intensive ABA, Thing 1 grew by leaps and bounds and started using words.  BEAUTIFUL WORDS like mommy, daddy, milk, potty, applesauce, no…a whole lot of “no.”  That’s definitely his favorite word.  He writes letters, recognizes sight words, and he can recite any Thomas episode like a champ.

Thing 1 to school

Thing 2, now 4 1/2 years old, was diagnosed with autism last year and also benefits from ABA.  He has friends in an inclusion classroom, he’s an awesome swimmer, and he knows all the Llama Llama books by heart.  This is our reality now: We have healthy, happy boys.  When they have bad days, we have a toolbox of communication and coping strategies to break through the frustration.  It’s like instead of treading water, we have a life preserver.  None of that would be possible without strangers (now friends) fighting for us–pounding the General Assembly and advocating for kids like mine.

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I’m looking at April and Autism Awareness Month with more hope than ever because I am excited to see Governor McAuliffe sign autism insurance expansion into law, I am inspired by my boys’ budding personalities, and I am resolved to continue to fight for them.  Tonight we went to Home Depot and bought our blue lightbulbs–for these little lights of mine.

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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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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!