Katie Vahey Gaebler
Book commentary: Associate medical conditions
Updated: Jan 28, 2021
I’m only just now realizing it’s been 3 weeks since my last post, so much for my goal of 1 post per week. And like all goals, for me, my family, and B’s ABA, they are milestones to be reached for, to try if you can, an opportunity recognize possible frustration but not to dwell in it, when you can’t. I’m proud of a small handful of accomplishments related to my blog I’ve made in the past few weeks; poured through a couple of subject related books, attended a parents group associated with the Autism Society of Colorado, participated with an autism in higher education speaker, Dr. Jane Theirfield Brown, that made a visit to my local college, and reconnected with a couple of colleagues there that could potentially lead to consulting on programming within their disability services office. While the focus to sit down and write has been a bit of a challenge this month, every little bit counts, and every bit deserves recounting when possible.
One of the books I’m reading now is Autism Spectrum Disorder: What every parent needs to know, 2nd ed. (2019) by Rosenblatt & Carbone. One of these editors is a parent of a child with ASD, and it’s published by the American Academy of Pediatrics. With all books I read I aim to use a critical eye, and have a goal to develop blog posts dedicated to ASD literature. I’m half way through this book, and so far it’s well organized, to the point, uses inclusive appropriate language, and seems accurate. Literature on ASD tends to be all over the map, and new discoveries about ASD happen regularly, so this recently published and medically backed piece made it to the top of my “to-read” pile.
Like all people on the spectrum (and why it’s called a “spectrum”), my son manifests some but not all ASD characteristics, and some characteristics more than others. Therefore it’s reasonable to jump around between books sections and focus on what is for us the most pertinent parts. I’m currently paused amid the chapter on medication. Before we formally went through the diagnostic process, when Brys was around 4 years old, we seriously discussed medication. Attention, aggression, elopement, and sleep have all be common issues that led us to pursue further medical assistance. Medication is a hot topic among parents of ASD children, something I regularly see discussed on ASD open forums and prompted among shared company. For our family, ultimately, we decided now was too young to a start medication routine. Since Brys has high cognitive functions and is highly verbal, we want him to have a chance to have conscious discussion on long-term medication options. And, as my husband pointed out, if we’re having trouble getting him to sit still at age 4, wait until middle school when we need him to focus on regular homework, and drug resistance is a real thing. We decided to work though any behavior modification therapies and see what effect those treatments can offer first, and then move to medication when he is older- if needed.
What made me pause at this chapter (aside from my interest) was a section titled “Treating associated medical conditions,” with seizures/epilepsy, tics, gastrointestinal problems, sleep disturbances as subsections. I thank my lucky stars every day that epilepsy is not a factor (so far) in our ASD journey. We have plenty going on under the headings of the following three subsections, but seizures terrify me. They compound family sleep disturbances, not to mention increase urgent care trips and can lead to questionable long-term brain function consequences. It’s estimated 25% of ASD people will have a seizure at least once in their lifetime, and approximately 46% of people diagnosed with ASD can also have epilepsy (p. 124). For a child with ASD that has associated epilepsy, medication to manage seizure behavior is essential. While at this time we’re not concerns about seizures, gastrointestinal problems are our daily matter.
I considered naming this post “washer woes,” as my washing machine was out of commission for a few days last week, and the pile was nearly out of control. I want to touch on GI concerns as a leading cause to our diagnosis, while I also believe in retaining my son’s privacy around toileting. Since this is a significant part of our family story, I feel the need to highlight the concern, and will avoid being overly descriptive.
We’ve come to rely on a daily dose of MiraLax (or generic polyethylene glycol) to manage the oscillation between chronic constipation and diarrhea (leaning more on the former, which can manifest painfully). As an infant, I would regularly pick Brys up from day care in his alternate clothing for the day, and required beaching what I had dressed him in that morning would hang throughout my laundry space. As a toddler, toilet training at daycare began around age 2 ½. My son was nearly 5 years old-and still with daily accidents- by the time it seemed he could be done with diapers. Toilet training was the bane of my existence for years; I knew that cognitively he knew what he was supposed to do, it was that literally he couldn’t feel what his body needed in that moment or mentally process the steps to care for his body appropriately. While his cognitive processing is strong, his body awareness and executive functioning are not. This translates to many areas of our life for my boy, but nowhere else was it so clear that we needed extra medical assistance for him than when his GI issues manifested. We started daily MiraLax 6 months ago (around his 6th birthday) after severe abdominal pain and bloody stool, and thank goodness, it has mostly helped.
Tics and sleep disturbances are lesser issues for us comparatively, but they still resonate. For sleep, we employ all the good hygiene measures, consistent bedtime routine, black-out curtains, no electronics the hour before bed. While my spouse and I were natural adventures before having children, we now debate any travel that would keep us away from our home even for one night, dreading the variance in routine. Less than 5 times total has Brys had a dose of Benadryl (or similar sleep aid) at bedtime, in effort to not have him build any sort of tolerance. He still has occasions of waking at night, is a regular early riser, and is challenged to be considerate of anyone else who might still desire to sleep after he has risen for the morning. I have a couple of funny stories (I think) of B in his underwear and a super hero-type cap standing on our front porch at 5am singing his heart out opera-style, about the solar system (we fortunately live in a very family friendly neighborhood). I also have some less-funny (I think) stories of him whacking me in the head for a 5am wake up, just to inform me he’s awake. Sleep routine has come a long way, and I anticipate tics may likely always be a daily occurrence. Stimming is normal in ASD, and I don’t aim to dismiss these, but gently direct him toward what can be more social appropriate. He flaps his hands, spins his body, makes high pitch squeals, and chews constantly (it used to be anything, now it’s mostly his shirts or chewy necklaces when possible). I don’t ever want my son to think I want him to be anything else than what he was made to be, and I also believe he is capable and needs to know what is socially appropriate and when and where he needs to regulate himself.
I have plans in future posts to discuss the various characteristics and our variety of ASD, and what we do to manage and live our lives as ASD advocates. This post has encompassed a couple of different themes, and for me, it’s all related. The more I read, the more I can participate, the more I live with ASD as front and center in my orbit, the more I feel I can advocate. It’s a full and rich existence, even if a little tiring, but it’s our reality, and I hope someone else can eventually benefit from these musings.