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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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Thanks, but No Thanks

Richmond Family Magazine is a free, local publication that’s been in existence since 2009. I browsed the magazine a few times, but I am not a devoted reader because of it’s lack of substance. It’s chock full of more advertisements than articles. The managing editor of RFM is Karen Schwartzkopf, and this week she put Virginia teachers in her crosshairs.

Beginning Friday, it started snowing in Central Virginia. By 10:00 p.m. on Saturday night, we had 12-15 inches in Richmond and the surrounding counties. School was cancelled Friday, Monday, and Tuesday…so far. Like my students, I get giddy over snow days. Mrs. Schwartzkopf, however, does not approve of that sentiment and let Twitter know about it.

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“Thanks, but no thanks,” is the only acceptable and family-friendly response I can think of for her #sorrynotsorry lameness.

Mrs. Schwartzkopf, I am not rooting to avoid my students. Snow days create more work for teachers when we have to revise our lesson plans and, undoubtedly, cut certain activities because we are expected to adhere to guidelines for pacing and testing. There will be field trips, conferences, and meetings to reschedule, as well as children to refocus. I find your attitude faulting teachers for the weather misplaced and immature. I root for snow days because I can be productive (I emailed parents, responded to students’ questions via Edmodo, and graded work today) while spending extra time with my own children. Slowing down our morning hustle and bustle on occasion is a nice and welcome change.

Here is what I really do not understand…

Why is it acceptable to openly disrespect and mock teachers in 2016? Over a snow day. When did the profession become worthy of such snark and silliness? Why are public servants, including police officers and teachers, the villains these days? I have taught middle school since 2007, and every year there are those few little darlings that make me question my chosen profession. But I realize that a child’s poor attitude and behavior towards teachers and classmates are likely learned from the adults in his or her life. Children need a model for respectful behavior, and some parents fail to meet this bill. On the other hand, middle-schoolers are impulsive, emotional animals. You deal with it and move on. As teachers, we strive every day to foster positive relationships with students and parents, hold our students accountable, give children a sounding board, make the classroom fun, encourage analytical thinking, and spend our own money on classroom supplies to that effect–all while collecting endless amounts of data, completing forms, checking off boxes, and spending hours upon hours in professional development, parent conferences, and meetings. Our good intentions and best practices never seem to be enough, and we are under constant scrutiny. Gregory Michie wrote in The Washington Post, “We’ve created a climate where good, hard-working educators feel justifiably discouraged and unjustly maligned.” That’s a big reason why morale is low among teachers across this country. The concepts of teachers becoming targets and our country’s CULTURE of disrespect is further opined by The Chicago Tribune, NoBullying.com, and The Wall Street Journal.

The fact that Mrs. Schwartzkopf, a work-from-home mother, saw her teacher friends celebrating a snow day apparently sent her over the edge. Perhaps she’s waging the psychological mommy wars, one of those parents who project her own sanctimony and/or shortcomings on other parents. Maybe she views school as daycare and teachers as babysitters. Whatever her motive, I’ll say it again: Our good intentions and best practices are never enough.

Screen Shot 2016-01-25 at 10.11.15 PM(Image source: Mouthy Mother)

I found Mrs. Schwartzkopf’s apologies insincere. Since those apologies, she deleted her Twitter account. It’s unfortunate she felt the need to hide. Mrs. Schwartzkopf, as a teacher, please allow me to share why I welcome a couple days “off” and the goals I’m working on this week. Consider it a “teachable moment.”

  • Work on my NBC entry: This 12-page narrative to accompany my submission for National Board Certification is kicking my butt. I haven’t written a paper like this since college, but it’s nothing like college writing. By the time I achieve certification, I will spend $1,025 of my own money and give up several Saturdays attending workshops and coaching sessions. I don’t want to sound like a martyr because I realized the work, time, and money commitments when I signed up; but I do want to point out how ridiculous you, Mrs. Schwartzkopf, sound when you mock people who also work from home in the evenings, weekends, summer, and blizzards.
  • Paperwork: I am up for recertification and my triennial summative review this year. I brought home my binder to organize the forms, certificates, emails, and lesson plans I collect to demonstrate I can do my job.
  • Get at least four Weight Watchers FitPoints every day: I’ve done this by walking the dog with my oldest son, and sledding and playing outside with my younger two.
  • Meal plan and prep: I usually do this every other weekend, but this Saturday I’ll be attending one of those NBC coaching sessions referenced above.
  • Clean bathrooms: I live with three little boys and a husband…enough said. This is low on the totem pole and the reason we buy Clorox wipes in bulk.

Today, my three boys and I piled onto the couch after breakfast and watched The Lorax. Things 1 and 2 took turns reciting all the lines. Thing 3 was just happy to be invited to the couch party. It was a wonderful moment, and one I will not apologize for wanting more of. I’ve never met Mrs. Schwartzkopf, and I certainly do not want to judge a person based on one poor comment. People have bad days, but when you use your status to promote poorly-placed snark and disrespect among your readers and followers, you lack integrity and common sense. Perhaps you should spend a week as a substitute teacher and see what it’s like in the trenches. How quickly will you be hoping for a snow day? I’ll offer the same advice I offer my 7th graders…Slow down, check your work, and think before you speak.

To read more about this debate and another perspective, check out Mouthy Mother’s blog post here.

And no matter what Mrs. Schwartzkopf says, my boys are loving our snow days. They also love their teachers, who I hope are enjoying some well-deserved time to explore the world outside the classroom.

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Sayonara, 2015

As 2015 and winter break come to a close, I am grateful for the past two weeks off work. Seventh graders were driving me bat-shit crazy, and I spent the week leading up to break telling them, “It’s not you. It’s me. We should see other people. We need a break.” My husband usually has more time off between Christmas and New Year’s, but not this year. We were still able to enjoy family staycation time. We made at least three trips to the mall for last-minute Christmas shopping, and the boys took in all the lights, reindeer, puddle jumping, and train rides their little brains could handle.

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Thing 1 has gotten much better about responding to questions with “yes” or “no” appropriately this fall. His behavior therapist hit that hard in their ABA sessions. When the Short Pump Express chuffed by, Thing 1 erupted into words asking and answering his own questions: “Go train? Yes! Train? Yes!” We rode–twice. Those little victories are amazing to witness, when you can see his eyes light up, everything click, and break through those communication barriers.

The husband and I managed a couple day dates thanks to the grandparents babysitting. On Christmas Eve, we drove to Veritas Winery to pick up my wine club bottles and a bottle of bubbly Scintilla for New Year’s toasting. I love Veritas wines, especially the Viognier and Merlot. I also love that the Veritas management allows people to bring outside food to the winery and picnic on the grounds. That’s what the husband and I did. We brought crackers, sausage, cheese, and enjoyed a glass of Scintilla on the veranda. We hit Blue Mountain Brewery afterwards for a tasting flight, and worked off that pretzel and beer by walking around my college alma mater.

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Christmas Day was not about fanfare. My kids do not like to open presents, they do not show excitement over Santa, and they definitely do not want to eat what’s served for Christmas dinner. Thing 3 was the first kid awake and thought all presents were for him. Santa brought him a shopping cart filled with fake fruits and veggies, which he’s pushed around the house nonstop for the past week. Thing 2 got launchers for his Thomas trains that make the trains race. And Thing 1 got an I.O.U. Lame, but the Target gift card we ordered using our Chase rewards to buy him an iPod never arrived. Santa’s gift is still in the mail, but Thing 1 did not seem to notice or mind. He instead showed Thing 2 how to work the train launcher.

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December has been unusually wet and mild in Virginia. We’ve had soggy days and temperatures in the 70’s. When it wasn’t raining, I took the boys to the playground, and we took the grandparents to the zoo one afternoon. These boys needs lots of fresh air and space to run.

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As last year ended, we felt tired and frustrated. We hated Thing 1’s school and the administration, Thing 2 was on a downward spiral of not sleeping and outrageously erratic behavior, and we had an infant. In the words of Jim Gaffigan, “Imagine you’re drowning. And someone hands you a baby.” We are still tired, but the year improved. Thing 1 had a great year with less meltdowns, more communication, and he is truly a delightful kid. Thing 2 is not sleeping, but we’re on the road to answers. Thing 3 is moving into terrible-two’s territory. They are all happy. We wish our friends and family the same health and happiness in 2016.

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One-Year Blogiversary

This month, I celebrated my one-year anniversary blogging with WordPress. Thank you to everyone who read, shared, and subscribed to Far Beyond Zebra in 2015! I continue to be shocked to see how many people share my ramblings… My top eight posts were about our autism journey (no surprise there) and shared 382 times on Facebook.

WordPress monkeys put together a cool yearly stat report:

A New York City subway train holds 1,200 people. This blog was viewed about 4,100 times in 2015. If it were a NYC subway train, it would take about 3 trips to carry that many people.

Click here to see the complete report.

Now it’s time to make some 2016 goals.

Thanks again, and Happy New Year!

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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.

brain_anatomy(Image source: www.hopkinsmedicine.org)

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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My Fantastic Mr. Fox

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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.

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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.

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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.

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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.

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(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.

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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.