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Yep, We Ditched Halloween

Hopefully I’ll get around to creating original content for this blog again…but right now work, kids, and the Richmond Moms Blog is keeping my plate full enough.

I wrote about how my kids are unimpressed by the usual holiday traditions, especially Halloween, here. This month, Thing 1 has recited Super Why’s “The Ghost Who Was Afraid of Halloween” on repeat. I assume that’s how he feels about October 31st with it’s eerie sounds, kids in masks, and sensory overload. That inspired my latest post for the Richmond Moms Blog about why we don’t celebrate Halloween. It has nothing to do with Christian ethics, but rather respecting our kids’ limits and interests. Read all about it here.

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Understanding PANS

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Imagine having a bubbly, precocious child suddenly plagued by tics, compulsions, mood swings, and a loss of skills. Imagine going to various developmental specialists, neurologists, and psychiatrists searching for answers. You may hear diagnoses of OCD, autism, Tourette Syndrome, and even bipolar disorder thrown at you, while your child is put through hours of assessments.

What if all of the symptoms were caused by a strep infection?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and it effects 1 in 200 children. It occurs when an infection triggers an immune response causing brain inflammation and life-changing psychiatric symptoms. My latest post for Richmond Moms Blog is all about PANS and the important work of the PANS Research and Advocacy Initiative (PRAI) in Virginia. Read all about it here!

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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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Conscious Un-Halloweening

It’s that time of year again when leaves change color, mums are abundant, and pumpkin spice rules the world. The back corner of Target was in shambles today as families bought last minute fall decorations, costumes, and extra bags of candy. As I trotted around Target waiting for a prescription refill with Thing 3, I bumped into a few people I know who all excitedly and sweetly asked the same question: “What are your kids going to be this year for Halloween?”

Ah. Nothing.

We had a blast last year when we decided to ditch the Halloween fanfare. Thing 3 stayed home with the grandparents while my husband and I took Things 1 and 2 to a college football game. They ran around campus, danced to the marching band, stuffed their faces with pizza, and skipped and smiled the whole night.

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Because October 31 falls on a school night this year, we need to keep plans low-key and local; but again, there will be no itchy costumes or mandatory trick-or treating for my brood. Maybe we’ll watch a movie, or maybe we will eat dinner out and do something fun with the boys. Since I received a lot of positive feedback on the original Conscious Un-Halloweening, I wanted to give a shout out to my fellow special needs parents. We are all heading into the busiest time of year with parties, extended family visits, dinner spreads full of foods our kids won’t eat, blinking lights, and extra layers of clothing… But it is a wonderful time of year, and I hope all find ways to make the holiday blitz special.

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And this is what happens when I roam Target unsupervised.

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How early did your son or daughter start talking about Halloween costumes this year? How many times did she change characters or ideas?

Some autistic kids are fine with this holiday, but my kids…

Well, they HATE Halloween.

My kiddos will happily support the pumpkin patch, corn mazes, orange lights, falling leaves, free candy, and spooky decorations, but they despise October 31st. Wear costumes? No, thanks. Trick-or-treating is out of the question. These are aversions that I had to pause to wrap my head around—because what kid doesn’t love dressing like a superhero and collecting free candy? I had visions of my adorable children dressing up, turning our Radio Flyer into the Batmobile, and joining a neighborhood trick-or-treating posse. Every October, I start concocting costumes for the whole family. And every Halloween, without fail, my kids have meltdowns. If Gwyneth can coin the phrase, “conscious uncoupling,” then my family is hereby consciously uncoupling with Halloween…

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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.