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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.

 

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Life Lately

After an insanely busy winter, I am back on the blog wagon… I suppose it’s time for a catch up.

Thing 2 continued his journey down the neurology rabbit hole. Last fall, we sought a second opinion on suspected absence seizures, and proceeded with an EEG, head MRI (revealing a Chiari malformation restricting the flow of cerebral spinal fluid), then a follow-up MRI on his spine to evaluate for any tears or syrinx. The spinal MRI was clear, and the neurosurgeon suggested repeating the scans yearly. Our coinsurance for the spinal MRI was $2,200, so I doubt yearly repeats are financially feasible, unless by some miracle Thing 2 qualifies for Medicaid. So far our county Department of Social Services has refused to screen Thing 2 for waiver services. Outright refused, which I am pretty sure is illegal. Typical Virginia. Meanwhile, Thing 2 has been pushing on his cheeks and acting like his face is in pain. Our pediatrician noticed his 6-year molars (the first permanent molars we get) were erupting. We gave him Advil, and that seemed to help. At the dentist last week, Thing 2 was amazingly cooperative, and it must have been divine intervention. Our dentist found an abscess in a baby molar, which must be horribly painful. That is why he’s pushing on his cheek, and that tooth will be pulled next week. This is the point I find myself frustrated and furious with autism and the lack of communication that goes with it. Thing 2 was unable to tell us he was in pain, and that is not acceptable. And unfair. Hopefully his mood will improve once that tooth is pulled, because no one in this family is allowed to take a knee! This month Thing 2 also returns to the neurologist and gets registered for Kindergarten.

Thing 1, on the other hand, is doing incredibly well–in school and ABA sessions. Thing 1 is in second grade, and by Christmas mastered Kindergarten and first grade sight words. His behavior therapist is working on generalizing that skill, meaning recognizing and reading those sight words in formats other than a flashcard. I left my school laptop at home one morning and came home during my planning block to pick it up. I walked in on an ABA session, and Thing 1 was reading. READING. I didn’t want to leave. Besides going into a general education second grade classroom for literacy circles, starting in January he was included in general education math, too. I love it when the stars finally align and Thing 1 makes such huge strides… Sometimes it is difficult to see a light at the end of the tunnel, but hard work always pays off. Thing 1 has been working his butt off.

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Thing 3 is mere days away from his second birthday. He was completely delightful and easygoing until he hit 18 months. That’s when he decided to jump start the Terrible Two’s. The kid is so stubborn! He wants to do everything himself, his way, on his own time. He is also not saying a single word, and every time he stands on his toes or walks in some repetitive pattern around the room, I feel a lump my stomach. I had to make the call yet again and ask for an autism evaluation, which will be another two months away. On that note, I am donating our brains to science. We have not seen a geneticist since Thing 1 was diagnosed in 2010, but there must be something behind the way our genes are mixing and mingling to produce potentially three kids on the spectrum. Hopefully by joining the Autism BrainNet, our noggins can help solve the mystery for other families. Besides, it’s not like any of us will need our brains when we’re six feet under.

I’m almost halfway done with the national board certification process. I submitted Component 2–a portfolio showcasing how I teach writing and differentiate instruction. I had to analyze three writing assignments for that component, and it made me grateful to not be a Language Arts teacher. Oy…the writing! I take a test (multiple-choice and short answer) in June, and then I’ll pick up the process again this fall with two more components to submit. I’m also ready to kick this group of seventh graders to the curb. Despite the lethal mix of laziness, immaturity, and psycho parents this year, I still love my job most days…until Pi Day comes around, and I take one in the face.

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It’s all for a good cause.

The house is in shambles since my husband demolished our master bathroom. It will look amazing when finished, but in the meantime, there’s a bathtub and two toilets hanging out in the garage, sawdust scattered, and a shop-vac by my bedside.

There’s a light at the end of the tunnel, right?

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Neurology, Part II

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Loud, tense, erratic, anxious, unpredictable. That describes our second child in a nutshell. It’s not that he is a bad kid; he is loving, smart, funny, and playful, too. Over the past year, though, we have struggled with his anxiety and lack of sleep…thinking there is more going on than just his autism.

After our visit to a pediatric neurologist in September, we were advised to sleep deprive Thing 2 until he cracked, and eventually the primitive desire for sleep would take over. That doctor focused solely on sleep patterns and ignored other symptoms I described, such as my son’s strange staring and zoning out, blinking hard as if he’s trying to focus, and clenching his face and jaw. Instead, I got a lecture on circadian rhythm. He told me I did almost everything wrong up to that point, and to stop giving Thing 2 medications or supplements (we tried melatonin, hydroxyzine, 5-HTP, l-theanine, and clonidine at separate times) to make him relaxed and sleepy. And that was that.

To say we felt helpless is an understatement.

The next month, we saw a different pediatric neurologist for a second opinion at the urging of our pediatrician. I described the same symptoms, and this neurologist gave partly the same advice–that we need to see a developmental pediatrician for a comprehensive evaluation. I agreed with that, and he shared our frustration with the exacerbating wait list. It’s a supply and demand problem. Then he completely deviated from the first neurologist. First, he said we gave Thing 2 one-third the amount of an effective melatonin dose based on his weight, so he suggested we use and increase melatonin. Second, this doctor was willing to flush out some symptoms, and he zoned in on staring and blinking behaviors. I wondered if the blinking and clenching I see is stimming (repetitive movements or sounds prevalent in ASD individuals) or an indication of possible seizures. Either way, the neurologist ordered an EEG to get a better idea of what’s happening in Thing 2’s brain.

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An EEG is an electroencephalogram  Small metal discs and thin wires are attached to different points all over the head, and this painless test records electrical activity of the brain. Through an EEG, doctors can look for abnormal wave patterns that indicate seizures and other problems. And here’s where I learned more about brain anatomy than I ever wanted to know.

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The occipital lobe is the back part of the brain involved with vision. This area showed abnormal impulses on Thing 2’s EEG. The neurologist suggested that if Thing 2 is having seizures, he is likely seeing bright lights or orbs around objects, which may account of the blinking. Either way, the abnormal EEG warranted full imaging of the brain, specifically an MRI.

It’s standard to put young kids (especially young kids with autism) under general anesthesia for an MRI. I hate anesthesia, and it’s my opinion that it was the environmental trigger that caused my oldest’s autism. He breathed in that sleepy-time gas when he had a myringotomy performed at 16-months and was never the same. We needed to put Thing 2 under general anesthesia for his own myringotomy, then to correct that procedure when one ear tube never fell out, and to remove a nasty mole off his ear lobe. Now faced with putting him under general anesthesia again, I questioned the necessity of all these procedures we subject kids to, but how else can we expect to get answers. And with the neurologist throwing the word epilepsy around, I scheduled the MRI.

An MRI is a magnetic resonance imaging test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. There were two findings based on Thing 2’s MRI. It confirmed seizure activity in the occipital lobe, and he has a Type I Chiari malformation severe enough to restrict the flow of cerebral spinal fluid. I had two reactions to these findings… First, it’s fascinating to see the images of Thing 2’s brain. We’re all amazing, intricate creatures, and you cannot take that for granted. Second, I was scared shitless at all the terminology and wanted off the neurological crazy train. I’m pretty sure I looked like a deer in the headlights.

So, what’s next? Symptoms of the type of Chiari malformation Thing 2 has include neck pain, unsteady gait and coordination, numbness in the extremities, dizziness, vision problems, speech problems, scoliosis, and sleep apnea. If Thing 2 was having headaches or vision problems, how would he let us know? Is sleep apnea contributing to his overall sleep problems? If the flow of his cerebral spinal fluid is impacted, could that lead to a build-up of fluid and hydrocephalus? Those questions need to be answered by the experts who treat Chiari malformations, so the neurologist referred us to a neurosurgeon. The neurosurgeon may recommend decompression surgery or to monitor the condition for now.

I am so, so grateful we got that neurologist’s second opinion in October.

Christmas is in three days. All I really want for my children in the coming year is good health, happiness, and answers. And maybe a full night’s sleep…that would be nice, too. Thing 2 only wants more doughnuts.

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Conscious Un-Halloweening

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. It’s conscious un-Halloweening.

There are a few things we’ve done over the years to soften the blow of costumes and candy. Autism Speaks provides good Halloween prep and tips for kids on the spectrum, including:

  • Create a visual story of what Halloween may be like for your child.
  • Try on costumes before Halloween; and if your child does not like his costume, don’t make him wear it.
  • Speaking of costumes, consider a Halloween costume that fits over your child’s regular clothes, such as butterfly wings or capes.
  • Practice going to a neighbor’s door, ringing the bell or knocking on the door and receiving candy before the big day.
  • Know your child’s limits and do only what he or she can handle.
  • Take your child to an activity in the community, such as a school festival or a neighborhood party where the child is already comfortable and knows people. Also partner with family and friends that your child likes.
  • If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.

The Easter Seals also provide ideas for sensory-friendly Halloween alternatives here.

We usually trick-or-treat at one house (Thing 2’s godparents who live around the corner), and head home. Several years ago, we were delusional overachievers and attempted to trick-or-treat down our entire cul-de-sac. My nonverbal oldest son carried a business card like this that year:

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He was in tears after ringing the second doorbell and had to be carried home. Our neighbors were all nice and patient, but Thing 1 wanted to be home, on the couch, and naked. Wearing layers, let alone a costume, is not his idea of fun. Our kids’ costumes over the years have been basic one-pieces or Melissa & Doug dress-up items, and I still feel like I am torturing the boys.

This year, we are liberating ourselves and not stressing out our kids. Instead, the boys and I decorated our front porch with a straw bale, mums, pumpkins, and a light-up ghost. Thing 2 picked out the ghost and declared it, “REALLY SPOOKY!” Thing 1 felt strongly about buying yellow mums. Thing 3 chose decorative metal stakes for the yard, including a dancing spider. We had fun, the porch looks amazing, and no costumes, children, or parents were injured in the process. At only 18-months old, Thing 3 doesn’t care or feel left out (yet), so this Saturday we are taking the big boys to a football game and not worrying about ghosts, goblins, and Yoda’s that come knocking. In the grand scheme of things, costumes and trick-or-treating are not life skills my kids need to survive or thrive. I complain when other people try to force my square pegs into round holes, so why should I treat them that way every Halloween? Nope, not anymore.

Only took me a few years to get there.

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