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My Fantastic Mr. Fox

Thing1_MrFox

He is so stinking cute.

Thing 1’s affection for Roald Dahl’s Mr. Fox knows no limits, and I’m not even talking about the movie. Fantastic Mr. Fox was the first big-boy chapter book we read together, and it holds a special place in our hearts. When I saw Mini Boden was also loving on Mr. Fox this fall, I knew my kiddo needed this shirt. I love all things Boden. Their top quality and cheeky prints make me happy. Their shirts and pants are also autism-friendly without itchy tags or seams. When the clothing lasts through three rough-and-tumble boys, it’s even better.

MiniBoden_MrFox

All parents know (or SHOULD know) how important it is to read to their kids. Having a teacher and chemist for parents…well, our boys have a lot of books. The best part about reading children’s books is revisiting characters from your childhood and watching your kids become part of those favorite stories. There are a few books that I’ve bought more than once because they are so well read, loved, and even eaten in our house. What is it about chewing on board books that is so appealing? It’s gross. But I digress…

My kids excel at phonics and can tell you all the letters and their sounds, but literacy–recognizing sight words and putting letter sounds together–is a challenge. I blame that on autism because it’s related to clear processing and comprehension delays for both Things 1 and 2. But our boys enjoy being read to, so we keep reading. Thing 2 has memorized a lot of books and can “read” them to us. His favorites are Roly Poly Pangolin and Llama Llama books by Anna Dewdney, anything by Bill Martin, Jr., the Pete the Cat series by Eric Litwin, and Dr. Seuss’ The Lorax. Thing 2 tells me frequently that he speaks for trees. Some days he tells me he speaks for trees repeatedly at 3:00 a.m. Thing 1 is a fan of the Step into Reading leveled readers, and he loves We’re Going on a Bear Hunt by Michael Rosen.

When Thing 1 started first grade, though, I tried to move him beyond the rhyme-time books, and in walked Roald Dahl and Fantastic Mr. Fox. We read three of the short chapters every night, and he was captivated. He loved the story, the illustrations, and the cleverness. He smiled as Mr. Fox outsmarted Boggis, Bunce, and Bean again and again. When we finished the book, Thing 1 quietly sat in his bed and stared at the cover for a while. Dahl was a hit, so I hit Barnes and Noble for more books the next week.

Thing1_MrFox

We gave The Twits a try, but Mr. Dahl’s opinion on beards halted us: “When a man grows hair all over his face it is impossible to tell what he really looks like. Perhaps that’s why he does it. He’d rather you didn’t know.”  My baby-daddy is one of those bearded men. As clean as he is, let’s just say it got awkward. Thing 1 kept taking the book away and handing me Mr. Fox instead. We then started James and the Giant Peach but did not make it past the first 20 pages. Reading about those nasty aunts tormenting James, Thing 1 grabbed the book and shouted, “NO!” I promised it would get better, but he didn’t believe me. He would not tolerate the sadness of James’s tears, threw the book across the room, and pulled Mr. Fox out of his book basket.

Thing 1 and I are about to start our third reading of Fantastic Mr. Fox, and Mini Boden is the bees knees for making a Mr. Fox shirt for my clever-as-a-fox son. Like the protagonist, Thing 1 shows us plenty of perseverance, love for family, and ingenuity every day. Maybe that’s why he finds this book so endearing. Guess what he’s wearing for school picture day this year.

Thing1_MrFox

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Neurology…

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(Image source: www.henrycalasmd.com)

Another morning spent with a neurologist…another waste of time.

When we saw a sharp spike in Thing 1’s self-injurious behavior (SIB’s) last fall, our pediatrician recommended he be evaluated for seizures. These episodes with Thing 1 were frightening because they started with a zoned-out blank stare, then his eyes dilated and he repetitively hit himself in the shoulders, sides, and head. A couple neurology visits, blood draws, one EEG, and one MRI later, there was no evidence of seizure activity. Around the same time, we consulted with a developmental pediatrician who prescribed a strong probiotic and several other supplements. Low and behold, after getting his gut cleaned up, Thing 1 was a calmer child. There’s a lot of evidence to suggest autism symptoms are exacerbated by gastrointestinal problems, and I believe this was the problem for Thing 1.

With Thing 2’s increasingly erratic behavior and lack of sleep, our pediatrician again sent us for a neurology consult. What is neurology exactly? These doctors deal with nerves and the nervous system, including the brain, spinal cord, and our sensory receptors. Today we saw a different pediatric neurologist (not the doctor who treated Thing 1), one with an added interest in sleep disorders. I woke up thinking, “YES! Today is the day for answers and a plan!”

Not so much…

Within the first 10 minutes, this neurologist was talking in circles. I detailed our background, what led to this appointment, and he appeared confused. Why were we seeing a neurologist and not a developmental pediatrician? Good question, doc. Maybe because there is a 7-month wait list for appointments, and I cannot get our regular pediatrician to pull any strings in that department. So round and round we went. I explained that Thing 2 is generally a high-strung, excitable, easily agitated kid; that he takes power-naps between 10:00 and midnight; and that when he is asleep, he is still constantly moving and fidgeting. This neurologist’s response: “There is not a medicine to help his problem.” Then the doctor drew me a picture of a clock and explained how the circadian rhythm works. Our prescription–keep Thing 2 awake until midnight, power-nap from midnight until 2:00 a.m., and eventually sleep deprive him until he cracks. I felt like a broken record, but I kept saying that sleep was symptomatic of a larger problem for Thing 2, whether that be anxiety, or neurological misfires, or whatever. But he kept drawing me more pictures of clocks. Not that I was begging for drugs, but I couldn’t get anything out of this guy. Complete blood count, metabolic panel, thyroid check…nothing.  An hour later, Thing 2 and I left the office, I looked down at him and asked, “What the hell just happened in there?” Thing 2 answered with, “Doughnut, please.”

Another speciality visit, another $50 copay, and no answers.

I guess we’ll go for the sleep deprivation and see who cracks first: us or him.

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What’s Wrong with THAT Kid?

Let’s talk about sleep.

In our case, it would be no sleep.

Thing 1 goes through phases of (thankfully short-lived) poor sleep. Usually he quietly sneaks downstairs, steals the iPad, and falls back to sleep watching Thomas videos on YouTube. On the other hand, Thing 2 (our middle child and second son diagnosed with ASD) has survived on very little sleep for years. He is only 5.

sleep

(Image source: http://dailycaller.com/)

According to WebMD, “Researchers estimate that between 40% and 80% of children with autism have difficulty sleeping. The biggest sleep problems among these children include: difficulty falling asleep; inconsistent sleep routines; restlessness or poor sleep quality; waking early and waking frequently.” Thing 2 has all those symptoms. The alleged culprits behind poor sleep for autistic children include low tryptophan and melatonin levels, gut problems, sensory disorders, anxiety, mast cell activation, and Lord knows what else.

We describe Thing 2 as an anxious child. Changes to his routine and transitions are tough. He has always exhibited separation anxiety. He grinds his teeth constantly and makes aggressive (loud and long) vocalizations. He is like the Energizer Bunny and keeps going and going and going… We’ve battled poor sleep for a while, and adding melatonin at bedtime was our first intervention. While it made falling asleep peaceful, it never kept him asleep. At some point between 2:00 and 4:00 a.m., Thing 2 could be heard crying in his room or the hallway. We tucked him back in bed and told him to go to sleep. Sometimes that was enough; more often it was not. To protect the sleep of our other children on noisier nights, my husband or myself head back to bed with Thing 2 or let him sleep with us. At least we are kind of sleeping then, with a spastically flopping and whimpering kid by our side.

Thing2_sleep

Thing 2 slept through the night a couple times this winter. Then we had constant night waking through spring and summer until August 1–the last time he slept through the night. He typically sleeps from 10:00 until midnight, then he is awake on/off and may sleep in bursts of 30 minutes to a couple hours. When our alarms buzz and it’s time to get ready for the day, Thing 2 has an epic meltdown because he is too tired to move. Mornings are miserable. Whether it’s lack of sleep or anxiety or something else, I don’t know, but he also no longer enjoys activities that made him happy. Now swimming and playgrounds and so many things lead to meltdowns.

You name it, we tried it. We maintain a bedtime routine, limit screen-time and noise, increased melatonin and switched to an extended release, supplemented l-theanine (for relaxation) and 5-HTP (to boost serotonin levels). Nothing made a difference. At his 5-year check-up this summer, I explained how sleep went from bad to worse and asked that Thing 2 be evaluated for ADHD or a sleep disorder or an anxiety disorder or all of the above. None of those would/could be done by our regular pediatrician, so she recommended we see the psychologist who performed the autism assessment. In the meantime, we gave clonidine a try. I hoped clonidine would be the answer to our prayers for more peaceful nights because many friends recommended it, saying it improved ADHD symptoms and sleep for their autistic children. The choice to medicate is difficult, even when it comes to supplements. I worry about the long-term or side effects of medications, but at some point it has to be an option on the table.

I called our psychologist’s office and was told she only does autism assessments, not ADHD or anxiety. I reached out to Thing 2’s teacher and BCBA for suggestions and got articles about sleep studies. I called a local special needs pediatrician and was told she was booked through March and there is a WAIT LIST for April appointments.

It’s September. And clonidine only made things worse.

At the end of my rope, I called our pediatrician and left a message that clonidine was ineffective, did we have other options, and could she pull any strings with that ridiculous wait list for the developmental pediatrician. The voicemail I got back: “This is as far as we go as pediatricians.”

That was the precise moment I snapped, and it was ugly. The floodgates that are my tear ducts opened, I called the office back and demanded to speak to our doctor because her message was unacceptable. I explained to her that we are in crisis mode, that Thing 2’s erratic behavior affects all parts of his day, and I am becoming the parent I never wanted to be: cranky, mean, yelling, impatient, and exhausted.

She’s getting us an appointment with a neurologist as soon as possible. For Thing 2, not me. But maybe I should also have my head examined.

It’s one thing to deal with autism every day and the ways that neurological disorder manifests itself. I realize it’s a journey with peaks and valleys, and that is fine. What deflates me is the lack of understanding we get from medical professionals. Autism is complex, and our kids are sick–some chronically. Whether they battle gastrointestinal problems, inflammation, seizures, feeding disorders, anxiety…couple that with learning disabilities, speech delays, processing and auditory disorders, and sensory sensitivity. My kids do not have the communication abilities to tell me what hurts, so we need real partnerships with doctors who can flush out these symptoms and bring peace to their little bodies. It’s time for the medical field and insurance companies to stop dismissing and disrespecting our problems as “that’s autism,” as if it’s an educational problem to tackle, and spend the time necessary to HELP our kids live healthy, happy lives. And these wait lists everywhere? Give me a break!

Thing2_sleep

This kid is tired.  So are his parents.

In other news, I’m breaking up with our pediatrician. And Thing 2 slept last night after a dose of hydroxyzine before bed. Hallelujah!! But me? I woke up every hour thinking, “Why isn’t he awake? What’s wrong? Is he still breathing? What’s happening?” It’s bedtime PTSD.

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One Perfect Day

We are lucky to have access to camps, sports, and recreational opportunities in our area for children of all abilities. We just spent a couple days in Virginia Beach for Surfers Healing–which is one of the most amazing events I’ve ever witnessed. Hopefully you’ve seen them highlighted in the news. We first heard about the group years ago…

That was before we were also on the autism path. Then last year, parents from Thing 1’s class talked about their experience with the surf camp. I jumped online when the registration link went live and signed up Thing 1 for Surfers Healing. On the surface, it seems like a simple concept: an experienced surfer paddles out tandem with an autistic child to ride waves. Once you see these surfers in action, you are in awe of both their athletic strength and strength of heart. And all the volunteers…volunteers everywhere showing extraordinary patience, compassion, and enthusiasm.  It’s beautiful and poignant and such an awesome sight to see.

This year, we signed up both Things 1 and 2 to surf.

Since we don’t really take vacations, we treated these two nights at the beach like one. Then Murphy’s Law happened…anything that can go wrong, did go wrong. But I have to back up a few days to explain it all.

On Wednesday night, we checked on Thing 1 after he sneaked off quietly to bed to find projectile vomit all over his bedroom. We woke him up to clean and decontaminate, only to watch him puke all over the hallway. A few hours of carpet cleaning later, the house still stunk, but everyone was in bed and resting comfortably. Thursday morning, the sun was shining, birds chirping, and Thing 1 seemed happy with no signs of distress. Thing 2 woke up coughing. Great… But since the cough did not sound horrible, we gave him some cough syrup and hit the road.

We stopped at Busch Gardens and spent a few hours riding roller coasters before continuing on to Virginia Beach. The boys rode the log flume for the first time, but of course it turned into a Thomas & Friends reference…we were on Misty Island, with jumping Jobi logs, looking for Bash, Dash, and Ferdinand. It was a great day, the boys were well-behaved, and we enjoyed family fun time while Thing 3 stayed home with the grandparents.

Busch Gardens Tram

We checked into our hotel Thursday evening, ate dinner, talked about how awesome the next day would be, and went to bed.

That night, Thing 2 woke up, coughing like crazy, gasping for air, and burning up.  We stood outside urgent care when they unlocked the doors Friday morning…except I didn’t have his insurance card, the receptionist would not accept my husband’s card with the same policy numbers, so I called our insurance company to fax a copy of Thing 2’s card before we could register. That removed the “urgent” from urgent care. Thing 2 felt miserable and made sure every staff member knew how upset he was by screaming and kicking and hacking all over them. A couple hours, one negative strep test, and one clear chest x-ray later, I was told it was viral, and we left with a steroid prescription and continued breathing treatments. No surfing for Thing 2. We returned to the hotel where he collapsed and took a nap.

Meanwhile, my husband took Thing 1 to the beach. Last year, Thing 1 was intrigued by the water and activity, but flipped out when it was his turn to surf. The life jacket went on, and he lost it. This year he was cool as a cucumber. Life vest went on and he jumped on the surfboard without hesitation. With Thing 2 sleeping on the sofa and my husband sending me pictures and video, I cried a little. I was so proud of him and bummed to miss it.

There Thing 1 goes…

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After napping and meds, Thing 2’s fever broke, and he kept asking to “go to the water.” We ate dinner on the boardwalk and let Thing 2 put his feet in the water.

Surfers Healing VB

Except he did not stop with his feet and jumped into the ocean with his clothes on. Typical.

Thing 1 and I walked to the end of the pier and saw a fisherman hook a shark. That was a little disturbing, but Thing 1 was not phased.

Surfers Healing VB

Surfers Healing Virginia Beach is a two-day camp serving over 400 participants. Felt like a long shot, but I contacted them and asked if Thing 2 could return the next day if he remained fever-free. The response was only one word: “Absolutely.” Thing 2 slept well that night, his cough was not oppressive, and his fever did not return. Saturday morning, we were back at the beach! Like Thing 1 last year, Thing 2 was not a fan of the life jacket. He started crying, but a volunteer scooped him into his arms and carried him to the surfboard. No time for hesitation. I’m grateful for the patience of that volunteer and the surfer–because it took Thing 2 a few minutes to relax. He loves the water, but being around strangers and trying something new was terrifying. Once he got his bearings, the rest was magic.

Surfers Healing VB

Surfers Healing VB

Surfers Healing VB

From there, we headed home via the Jamestown Ferry. It’s funny…take the boys to the beach for two days, and it’s just okay. Put your car on a boat and cross the water, and they are amazed. Needless to say, the Ferry was the piece de resistance.

Jamestown_Ferry

My cell phone rang on the way home. It was the urgent care nurse we saw on Friday. A radiologist and another doctor reviewed Thing 2’s chest x-ray, and it was not so clear after all. He has pneumonia. I don’t think I will win a parenting award letting my pneumonia-infected 5-year-old surf and frolic around the Tidewater, but I guess it was worth it for one perfect day of aloha therapy.

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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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Prayers of the People

Confession: I am irritable this week.

Summer tends to be a tough time in our household.  Some people suffer from seasonal affective disorder in the winter, but my Thing 1 gets hot-tempered in summer.  He is up, he is down, he can be destructive.  In the last two weeks, he ripped apart two books and shattered a glass candle container.  Combine that with Thing 2’s sheer loudness at all times, and I’m about to lose my mind.  I snapped at the grocery store cashier yesterday.  I rolled my eyes and completely disregarded pick-up procedures at Thing 2’s school.  I’ve been overly snarky with my husband.

Last week I also attended a meeting with my son’s teacher, principal, and occupational therapist.  At his spring IEP meeting, I asked for a full OT evaluation.  That evaluation was complete, so it was time for our meeting and amendment.  Sitting across from the principal, though… Oy.  I do not like that woman.  She followed me outside in an attempt to shake a name out of me.  Who told me Thing 1’s self-contained autism class spent days watching Disney movies?  The subject came up in the spring, and this woman is hell-bent on getting a name from me.

I ain’t no snitch.

I came across this prayer today, and it spoke to my feelings over the past couple weeks.  Both Hands and a Flashlight is written by an autism dad, and his was the first blog I started following after Thing 1 was diagnosed.  Whether you’re on the special needs path or not, I think it speaks to all parents doing their best and fighting the good fight.

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Prayers of the People:

Dear Lord,
You who watch over the lilies of the field,
Help us just to not suck today.

Help us to put our clothes on right,
Or to at least meet the minimums of decency.
Help us to put toothpaste on our brushes instead of diaper cream,
And to not look too much like a raving lunatic in public.
Or at least grant us shelter us from arrest.

Help us when we yell at someone in a store
that we might not hurt our voices.
Guide our feet as we kick ass,
And lead us not into more expletives than are necessary,
But make them the right ones,
In thy mercy.

For those who do not believe in our kids,
For those who judge our parenting and our kids’ behavior,
For those too quick to speak and too slow to listen,
For those whose hearts have hardened,
We pray.

For those who cannot fathom how to pay their bills,
For those who hold their heads in despair,
For those who don’t know if it will ever get better,
For those getting up off the ground to fight once more,
For those who refuse to give up,
For those who choose love over fear,
We pray.

And may our coffee pots brew well and our grounds be plentiful.
Amen.

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You Know You’re an Autism Parent When…

Earlier this month, my husband shared a list with me from The Mighty called, “You Know You’re a Special Needs Parent When…”  Check out the original post with some pretty funny e-cards here.  Now that we have a week of summer break under our belts and I spend all day with my kiddos (when I’m not pawning them off on Nana while I day drink with friends), this list comes into my mind over and over again throughout the day.

You have to understand that my children are spastic during the summer, and no amount of time in the pool, sun, or any activity tires them.  They are high on life one minute, then screaming “DINOSAURS” and throwing shit the next.  It’s a Jekyll and Hyde routine stuck on repeat.  Maybe it’s the heat or humidity or change in routine, but it leaves the husband and I wondering what alternate universe we entered.  Hence, the day drinking.

So tonight I offer you some examples of what The Mighty and I know about autism parenting this week…

“You’re a walking medical dictionary.”  I just schooled my husband in mast cell activation disorder regarding Thing 1, and the benefits of a low-phenol diet for Thing 2.  It was an out-of-body experience.  Tonight at Whole Foods, I actually said to him, “I can’t remember what is lower in phenol–green or red grapes.”  Who am I?

“When putting your child’s socks on is a task that takes at least 15 minutes.”  I needed to make a quick trip to the grocery store when the baby woke up from his nap yesterday.  It took 10 minutes for Thing 1 to find his shoes.  When he finally found his Crocs, he stared at them.  It was a staring contest with ugly shoes.  By the time everyone got buckled into the van, I realized no green beans are worth this amount of effort.

“You’re constantly surprised by your own courage, and by your child’s courage” and “You are capable of more love and strength than you ever thought possible.”  One line I hate hearing is, “I don’t know how you do it.”  Why wouldn’t you do your best?  Or at least try?  What’s the alternative? Some days you batten down the hatches and ride the waves.  Some days you have to tell someone off.  Some days you’re the beauty, and other days you’re the beast.

“You’ve learned to celebrate the little victories.”  You pooped in the potty?  YAY!!

Thing 2 blew me away today at the pool.  After swim team practice, he wanted to stay and play.  There were other boys from the team throwing balls, diving, and being neurotypical boys on a summer day.  Thing 2 watched them as he swam along with perimeter of the pool.  Then he took someone’s Lightning McQueen, threw it, and dove for it.  He bobbed back up with McQueen and a big smile.  He did that a few times among the kids, not on the perimeter, and that took a ton of courage from my little boy.  He was initiating play with other kids, and that is a big victory, my friends.

“You’ve (almost) learned how to forgive yourself for not being perfect” and “You’ve (almost) become immune to the looks others give you in public.”  I yelled and cursed trying to get the kids to the grocery store yesterday.  Then Thing 2 tried to hold Thing 1’s hand in the parking lot, and that set Thing 1 off.  I lost it.  I horse-collared Thing 1 and told him to stop being a butthead.  An old lady gave me a nasty look.  I’m not perfect, neither are my kids, and we do not pretend to be.

“You will never take your child’s health for granted.”  As stressful as some trips to the grocery store can be, I am grateful to have these little boogers.  I know several friends and family members who lost children to sickness or birth defects.  Being able to fuss at my kids, love on them, and smother them with kisses before bed is a gift.

“You always know when to trust your instincts.”  This is a big reason why we’re getting Thing 1 out of his current school placement.

“No matter how much you go without it, you’ll never get used to the lack of sleep.”  TRUTH.  Sleeping in and taking naps, when they happen, are the most magical things ever.  As magical as unicorns galloping along rainbows, because I never see them.  Our typical night starts with Melatonin for the big kids at 8:00.  Then the husband lays with Thing 2 until he falls asleep. The adults go to bed around 11:00.  Thing 2 is awake again anywhere between 12:30-2:30 a.m., screaming bloody murder and repeating, “Come here!” and “Go to bed!”  We let him cry it out, even when he wakes up his brothers.  Thing 1 is up and will rummage the house for iPads and food starting at 5:00 a.m., sometimes earlier.  When I do snap at my kids, it’s because I’m so damn tired!

“Any day your child keeps his pants on is a good day.”  A better name for Thing 1 is “White Lightning.”  He is a habitual streaker, and we catch him outside daily, jumping on the trampoline or swinging high in the swing, butt naked.  My husband was laying on the couch last weekend when Thing 2 came into the family room and threw his shorts and underwear in daddy’s face.  That’s pretty bold.

Streaking

(Image source: http://www.quickmeme.com/)

“The neighbors begin to wonder why so many therapists are coming and going from your house all week.”  It’s called ABA, bitches.  Now get back to your post about how gifted and perfect you want Fakebook world to think your child is.

Okay, that last one sounded a little bitter.  My bad.

Here’s to summer survival.

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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.”

Tree

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.

Thing 2 snack

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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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.