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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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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

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Introduction to Autism–TACA

The Out-of-Sync Child: Great book!

Wrightslaw Special Education Law & Advocacy

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My Day at the GA

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I spent my Friday morning at the Virginia General Assembly to lend my support for House Bill 1940.  For those of you unfamiliar with Virginia’s legislature, our General Assembly is made up of 40 Senators and 100 Delegates who convene every January for either 30 or 60 days.  On Wednesday, Delegate Tag Greason introduced HB1940 to end the age cap on autism insurance coverage in our state.

A little background… In 2011, our General Assembly passed a law requiring insurance companies cover autism therapies, specifically pharmacy care, psychiatric and psychological care, speech therapy, occupational therapy, physical therapy, and behavioral treatment.  When it comes to behavioral treatment, applied behavior analysis (ABA) is specifically mentioned, with a cap of $35,000/year.  Besides the monetary cap, the age is currently capped at 6.

We all know autism does not magically go away when a child turns 7.

Both Matthew and Wesley receive ABA.  We have been blessed to work with wonderful providers and both boys continue to make gains with this treatment.  Because of ABA, Matthew regained many skills he lost after a massive regression, working on academic, language, self-help, and social skills.  Because of the insurance mandate, we could afford to enroll Matthew in The Founders Center of Commonwealth Autism until he turned 7, which is where Wesley goes now.  Matthew currently receives home-based ABA before school two mornings every week.

When Matthew aged out of the insurance mandate, we were not left high and dry because he also receives funding via the state Medicaid system.  We went through various screenings when Matthew was 3 years old and were found eligible for EDCD and ID waivers, which granted Matthew Medicaid benefits based on his personal income, not our family income.  The waivers are complicated and bureaucratic; but in a nutshell, Matthew had to fit a criteria for nursing home care to receive EDCD benefits.  The social worker who evaluated Matthew told me this particular waiver was intended to keep the elderly and mentally disabled with their families and out of institutions.  This is the system we’ve been thrown into.  I feel so horrible for friends who cannot access these services for their autistic children, but it’s symptomatic of a much larger broken system, which I tried to convey to the senators, delegates, and legislative aides I met today…My husband and I are both college graduates, employed full time, regular middle-class suburbanites.  We should not rely on Medicaid for services.

Knowing that opposition to HB1940 seems to be the thought that it will cause health insurance premiums to skyrocket, I used my own family as an example.  The state can continue to pay Matthew’s outrageous ABA bills, or let private insurance do the work for mere pennies to the consumer.

Last year, autism claims raised premiums $0.22/month in Virginia.

$0.22 and people want to cry uncle.

So here was my day…

On Wednesday, I contacted my senator and delegate.  I expressed my support for HB1940 and told them I was going to be at the General Assembly on Friday and would love the opportunity to speak with them in person.  I heard back from Senator Steve Martin’s office and had face-to-face time scheduled for 9:00.  His office was bombed, his secretary looked overwhelmed, and I had this song playing on repeat in my head:

At 9:10, his secretary got the attention of the packed room, pointed to me, and said I was next.  Out comes Martin, THRILLED to see a group doctors outside his door.  All caps really doesn’t convey how happy he was to greet those guys.  He tells them to come on in, to which little-old-lady secretary responds, “Senator, this woman is next.”

“Oh.”  Seriously, he looked sad.

I did my best to give him my spiel about Matthew and Wesley and the $0.22/month thing and how much I hate Medicaid in our 120 seconds together.  He suggested I make an appointment to meet him for coffee when the General Assembly is not in session.  In my mind, I was thinking, “A-hole, I need your attention right now, not in March.”  Instead, I thanked him for his time.  Then he hollered for the doctors.  Senator Martin is on the Autism Advisory Council, and I’m his constituent.  I was not expecting our meeting to be so disingenuous.  If I could insert the sound of a balloon losing air and flopping to the floor here, that would describe how I felt.  Deflate.  Sputter.  Flop.

I met up with a group from Autism Speaks, including several legislative aides and the organization’s Director of State Government Affairs.  They were all amazing, smart women. They learned that an identical bill was being introduced in the Senate today. I joined them in meetings with Senator Richard Stuart’s office and my delegate’s office, Manoli Loupassi.  Their staff listened, asked questions, and genuinely seemed interested in learning about the bill and how current coverage impacts families.  I was asked how our costs are affected, and what are the going rates for ABA, speech therapy, etc.  They wrote those numbers down.  How many hours of ABA did Matthew get under the insurance mandate?  How many hours does he get now?  What’s the difference between that school he went to and what he gets now?  All good questions because it shows they were trying to understand the problem beyond a sheet of talking points.  I got a follow-up e-mail from Delegate Loupassi this afternoon thanking me for sharing information with his aide, and he provided his cell phone number for any additional comments, concerns, or questions.  Now that’s amazing.

Then I came home and took a picture of my outfit.  I rarely look put together.

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The people from Autism Speaks asked if I would be available to come back for committee meetings.  Sure, why not.

In the meantime, you can help by contacting your own senator and delegate and tell them to support HB1940.  You can use this form letter here:

Dear _____:

My name is _____, and I live in your district.  I want to call your attention to a bill that is very important to me, my family, and my community.  Please support House Bill 1940.  This bill recognizes that autism does not go away when a child turns seven, and medical treatment is often still necessary.  The Virginia State Corporation Commission reports that the average annual claim cost per member for 2012 and 2013 were only $2.19 and $2.66, respectively.  Actual claims experience from states that have at least three years of autism insurance coverage and higher or no age restrictions indicate an average premium impact of less than 50 cents per month, yet recent studies show that intensive services can result in a total lifetime savings range of $1-2 million dollars!  I sincerely hope I can count on your support.

Feel free to share a personal story about how autism has impacted your life.

You can also share these details from Autism Speak and Virginia Autism Project:

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