Springboard for Post: Google Doesn’t Always Yield Resources…

I’ve had a busy six months, but I’m hoping to get back to this blog. I’ll start with a list a resources… I’ve seen several posts on Facebook discussion boards about the difficulty in finding material about Landau-Kleffner Syndrome.

ARTICLES:


Ballaban-Gil, K. & Tuchman, R. (2000). Epilepsy and epileptiform EEG: Association
with autism and language disorder. Mental Retardation and Developmental Disabilities Research Reviews, 6, 300-308.

Harrison, M. (2000). Landau-Kleffner syndrome: Acquired childhood aphasia. In T. Layton, E. Craig, & L. Watson, (Eds.), Handbook of early language impairments in children: Vol. 1. Nature. (pp. 263-285). Albany, NY Delmar

Landau, W.M. & Kleffner, F.R. (1957). Syndrome of acquired aphasia with convulsive disorder in children. Neurology, 7, 523-530.

McVicar, K.M. and Shinnar, S. (2004). Landau-Kleffner syndrome, electrical status epilepticus in slow wave sleep, and language regression in children. Mental Retardation and Developmental Disabilities Research Reviews, 10, 144-149.

Metz-Lutz, M. N., Hirsch, E., Maquet, P., de Saint Martin, A., Rudolf, G., Wiioland, N., et al. (1997). Dichotic listening performances in the follow-up of Landau and Kleffner syndrome. Child Neuropsychology, 3, 47-60.

Mikati, M.A. & Shamseddine, A.N. (2005). Management of Landau-Kleffner syndrome . Pediatric Drugs, 7(6), 377-389.

Plaza. M., Rigoard, M., Chevrie-Muller, C., Cohen, H., & Picard, A. (2001). Short-term memory impairment and unilateral dichotic listening extinction in a child with

Landau-Kleffner syndrome: Auditory or phonological disorder? Brain and Cognition, 46, 235-222.

Stefanatos, G.A., Kinsbourne, M., and Wasserstein, J. (2002). Acquired epileptiform aphasia: A dimensional view of Landau-Kleffner syndrome and the relation to regressive autistic spectrum disorders. Child Neuropsychology, 8(3), 195-228.

Tuchman, R. (2006). Autism and epilepsy: What has regression got to do with it? Epilepsy Currents, 6(4), 107-111.

Van Slyke, P. A. (2002). Classroom instruction for children with Landau-Kleffner syndrome. Child Language Teaching and Therapy, 18(1), 23-42.

Vance, M. (1991). Educational and therapeutic approaches used with a child presenting with acquired aphasia with convulsive disorder (Landau-Kleffner syndrome). Child Language Teaching and Therapy, 7, 41-60.

http://cme.ucsd.edu/ddhealth/courses/LANDAU-KLEFFNER.html

Issa, Naoum P. “Neurobiology of CSWS and Landau-Kleffner Syndromes.” Pediatric Neurology (2014).

Chilosi, Anna Maria, et al. “Language Regression Associated With Autistic Regression and Electroencephalographic (EEG) Abnormalities A Prospective Study.” Journal of child neurology 29.6 (2014): 855-859.

Kuriakose, Sarah, et al. “Rehabilitation issues in Landau-Kleffner Syndrome.” Developmental neurorehabilitation 15.5 (2012): 317-321.

Sadiq, Syed B., Syed A. Hussain, and John W. Norton. “Ictal aphasia: An unusual presentation of temporal lobe seizures.” Epilepsy & Behavior 23.4 (2012): 500-502.

Stefanatos, Gerry. “Changing perspectives on Landau-Kleffner syndrome.” The Clinical Neuropsychologist 25.6 (2011): 963-988.

Fandiño, Marcela, et al. “Landau–Kleffner syndrome: A rare auditory processing disorder: Series of cases and review of the literature.” International journal of pediatric otorhinolaryngology 75.1 (2011): 33-38.

Titus, Jeffrey B., Rebecca Kanive, and Michael Morrissey. “Landau–Kleffner Syndrome.” Encyclopedia of Clinical Neuropsychology. Springer New York, 2011. 1422-1425.

Zhang, Jie, et al. “Electrical status epilepticus during sleep: a case report and review of the literature.” American journal of electroneurodiagnostic technology 50.3 (2010): 211.

Robinson, Richard O., et al. “Landau‐Kleffner syndrome: course and correlates with outcome.” Developmental Medicine & Child Neurology 43.4 (2001): 243-247.

Giovanardi Rossi, Paola, et al. “Landau–Kleffner syndrome (LKS): long-term follow-up and links with electrical status epilepticus during sleep (ESES).” Brain and Development 21.2 (1999): 90-98.

Gordon, Neil. “The Landau-Kleffner syndrome: increased understanding.” Brain and Development 19.5 (1997): 311-316.

Ming, Li, et al. “Correlation between CSWS and aphasia in Landau-Kleffner syndrome: a study of three cases.” Brain and Development 18.3 (1996): 197-200.

Paquier, Philippe F., Hugo R. Van Dongen, and M. Christa B. Loonen. “The Landau-Kleffner syndrome or’acquired aphasia with convulsive disorder’: long-term follow-up of six children and a review of the recent literature.” Archives of neurology 49.4 (1992): 354-359.

Landau, William M. “Landau-Kleffner syndrome: an eponymic badge of ignorance.” Archives of neurology 49.4 (1992): 353-353.

Hirsch, Edouard, et al. “Landau‐Kleffner Syndrome: A Clinical and EEG Study of Five Cases.” Epilepsia 31.6 (1990): 756-767.

Gordon, Neil. “Acquired Aphasia in Childhood: the Landau‐Kleffner Syndrome.” Developmental Medicine & Child Neurology 32.3 (1990): 270-274.

McCandless, David W. “Landau–Kleffner Syndrome.” Epilepsy. Springer New York, 2012. 239-250.

WEBSITES:

http://www.disabled-world.com/health/neurology/lks-aphasia.php

http://www.friendsoflks.com/about_lks.htm

http://www.asha.org/Publications/leader/2010/100921/Landau-Kleffner.htm

http://www.asha.org/Publications/leader/2011/110405/Auditory-Remediation-for-Patients-With-Landau-Kleffner-Syndrome.htm

http://www.gosh.nhs.uk/medical-information/search-medical-conditions/landau-kleffner-syndrome
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Springboard for post: Insomnia

In The Angel of History, Carolyn Forché writes: “While sleeping, the child vanishes from his life.” I’d like to think this is true for Holden, but it seems like the opposite. Sleep vanishes his life. Because the interictal spikes during sleep disrupt his short-to-long term memory processing, sleep can erase the day. The sight words he’s been working on for four years disintegrate into chalk dust on the bottom ledge of his brain. And then, out of the blue, as we walk into the grocery store, he’ll say something like, “There’s Sady. That dog looks like Sady,” pointing to a dog that looks like his grandparents’ dog. I’ll say, “Yes! You’re right. Good job. It looks like Sady, but it’s not.” And he’ll say, “because Sady is schnauzer.” How did he suddenly summon that word, schnauzer? He wasn’t confident about it—the word was muffled, blurred a bit—but it stunned me. I remind myself: sometimes words appear for him like dreams appear during waking life—a fragment, a smear of scene, and that recalls a context.

So what happens to him during sleep? His sleep lacks depth and quality, certainly, which I can tell when he mumbles and tosses-and-turns (thanks, video monitor) or when he sleeps for seven hours (a couple less than his 9-10) and wakes up at 4 a.m. ready for the day. By the time I get downstairs, he’s put together a puzzle and gotten five books of the shelf to “read.” This is much better than insomnia nights where he’s up at 1:30 or 2:00 am for the rest of the day. Even if I can get him back to bed (often a difficult task) he won’t get back to sleep, but entertains himself in bed with bits of song and movie dialogue he’s memorized.

During some of the toughest moments of my waking life, my dreamlife has helped keep me balanced. While working on my graduate coursework—cerebral, inactive work—I dreamed I was an international spy who dressed up in awesome clothes and kicked ass regularly (a la Sydney Bristow in ALIAS). What happens to Holden’s dreams? Do they wake him up? Is dreaming so much work that he would, on a subconscious level, rather not do it? Because how can an eight-year-old swallow so much sleep medication and still wake up a few hours later bright-eyed and bushy-tailed? He’ll chatter about his video game “Look! There’s angry birds. There’s the red bird. And the b-bomb bird!” then yawn a deep and powerful yawn. But not go back to sleep.

So usually, on these days, I don’t go back to sleep, either. Some nights, when Holden wakes up earlier and Brian is working late into the night, he’ll get him back to sleep (easier to do when Holden was up at midnight or 1:00am). But when it’s 4:00 or 5:00a.m., I’m up for the day, too. And sometimes I can be productive (like writing this blog entry) or sometimes I doze next to Holden on the couch. I hope someday sleep can be as restorative for Holden as much as it is for me.

Springboard for Post: Chemistry Experiments

I hated just about everything about high school chemistry class except the last unit: solving for unknowns. It could’ve been the mystery, but more likely it was the hands-on testing: burning the compound, measuring, observing, etc. I recall this scientific process all these years later when I’m organizing all of Holden’s medications because it feels like I’m trying to “solve” the unknown of his LKS. In the morning, he takes Ritalin (attention), topomax and lamictal (anti-“big”-seizures); at night, topomax, lamictal, clonopin (sleep and anti-seizure), and melatonin (sleep) at night; we add prednisone (addresses the interictal spikes/LKS) on Friday nights and Saturday mornings. His cocktail. My chemistry experiment.

I say my experiment because the neurologist and psychologist weigh my observations quite carefully when determining which medications work, when to increase them, and when to add a new one. For the first year Holden was taking prednisone, for example, he took it morning/night twice a week. It seemed to be helping slowly over time—it arrested the “big” regression and we could see some language improvement—but it interfered with his sleep. After several months, we reduced it to once per week with the hope that the language gains wouldn’t be lost. Luckily, they weren’t. He started sleeping better and his behavior improved, too.

But that was harder to untangle than you might think. Since LKS disrupts Holden’s ability to use language, sleep, process short-to-long term memory, sustain attention, and regulate behavior, it was tough to untangle the following threads: what problems was the disease itself causing? How much sleep deprivation was caused by the disease or by the prednisone? Is it the disease or sleep issues cause for such fluctuating behavior? Were some of the issues we were seeing side effects medication? In chemistry class, we were taught to apply one test at a time to control variables. But with a human being, variables are harder to control. It’s particularly difficult when other medical professionals, like pharmacists and general medical doctors, see his list of medications and raise an eyebrow or narrow their gaze.

The latest use and success of CBD oil (medical marijuana) for children with epilepsy presents hopeful development since it seems that this one medication could do many of the things that the other medications do, and it seems like there are less harmful side effects. Still, its limited long-term use in children still makes it feel like a chemistry experiment. Since Holden’s epilepsy isn’t as life-threatening and life-denying as some forms of epilepsy syndromes are, I’m waiting a bit longer to see what studies emerge.

I often hear parents of slightly neuro-divergent children (those with ADD or ADHD, for example) worry about the effects of one medication. Or parents with neurotypical children wonder how I can subject my child to so much medication. Even other parents of children with LKS have a tough time negotiating the issues that medication presents. Why, when it comes an infection or illness, do we happily rely on medication, but when it comes to the brain, we are so less willing to place our faith in it? Negotiating healthy skepticism becomes so difficult. Perhaps because, for Holden, none present a “cure” but just an arrest of regression and a positive adjustment for a severely, severely, severely abnormal brain.

Springboard for Post: Expectations and Memories

Today, the first day of third grade for Holden, was hard.

Not because he has a new teacher—she’s great.

Not because he told me, as he put his backpack on, “I’m a bit scared, Momma.”

Not because he has a new room and a new team—everything seems fine.

Not because “my baby is growing up.” He is. And thank goodness. I’m probably one of the few parents looking forward to puberty because it will mean a resolution of LKS seizures.

Not because I heard other parents doing what I call “lucky worrying” (i.e., Will my child learn the right kind of math? Will the science curriculum challenge him? What if my third grader only reads at a fifth grade reading level, not sixth?). I’m sure I’d do the same kind of worrying if Holden was normal.

It was tough because, despite everything, there are some expectations I can’t let go of. I really want Holden to love reading as much as I did in third grade. In Miss Hurley~Mrs. Bishop’s room (Miss Hurley left mid-year quite mysteriously and Mrs. Bishop replaced her), I raced to get my seatwork done so I could go in the “free reading place,” a desk partitioned off from the rest of the room. In fact, I only have two vivid memories of third grade—my best friend, Susan Fritz, winning a poetry contest (I vowed to win the next one) and sitting in the free reading place devouring Judy Blume books. (I know, I was a bit young for those, but their taboo nature made me want to read them even more).

Last night, I read a story to Holden, and he “read” one to me (he had it memorized), then he told me to leave him alone, so he could read some more. He fell asleep with the book in his hand. He’s done this a lot lately. He’s been surrounding himself with books more—usually books he’s familiar with, the stories he loves. Perhaps it’s just wishful thinking that he’s longing to read as much as I’m longing for him to learn. Perhaps I just can’t imagine my life without the pleasure of reading and it pains me to think that he might (although most people with LKS do learn to read).

Although my mom can trace the person I am today throughout the various years of my life, when I look back, third grade was really when I began to recognize the person I am today. Much of that had to do with reading and writing. It will be an amazing day when I see Holden sound out words and read a sentence without having heard it once or twice already.

And I wonder what he’ll remember about this year of his life.

Springboard for Post: Transitions

I’m really trying to figure out what happens in Holden’s brain when he is in the process of making transitions: going on a walk, getting ready for school, moving from the car to the grocery store, etc. The double-edged sword of impulsivity and receptive language loss creates the perfect storm for intense tantrums. On our trip to Denver, driving breaks were the most difficult. The first few times we stopped at convenience stores to get gas, Holden walked down the aisles trying to grab as many bags of Cheetos and candy bars as humanly possible. I found it challenging to steer him toward the bathroom—especially when I really had to go—when he’s freaking out about wanting chocolate. In North Platte, Nebraska, he threw himself on the floor yelling “Noooooo!” Really. Loud. I never let him have what he grabs, but I find it equally tough to get those things out of his hands without wrecking them. (Sometimes I can get him calm and he’ll put them back himself but not always). It was all I could do (under the careful watch of an audience of convenience store shoppers) to get him to drop the Cheetos and head to the bathroom.

His neuropsychologist says the “transition” issue is similar to what happens with kids with autism—there’s something impairing his ability to sequence actions and make decisions. I really wish I understood this better and how to make things easier for him. Sometimes giving him other things to focus on helps, like my iPhone or his iPad. Most of the time, he doesn’t really look at the screen, but it’s in his hands and he can’t grab as fast. Sometimes redirecting him to the screen helps keep him from creating havoc.

I have gotten some insight as to how Holden feels about these moments.
A couple of weeks ago, I was trying to get him to put his pajamas on after taking a shower. Meltdown of gigantic proportions ensued. When we’re not under pressure of place or time, I just leave him alone until he gets through them. (When we have an appointment or it’s a school day or if we have to get out the door for whatever reason—time pressure makes those meltdowns feel more necessary to resolve quickly.) But the other night it was just bedtime, so I let him have his meltdown. Once he got over it himself, he sat on the toilet and said, “I’m such an idiot. You don’t deserve that.”

At first I thought he was possessed because Holden usually doesn’t put sentences together like that. Sometimes he’ll say a world like “idiot” but he’ll say it with the intonation he gets from the movie or TV show he’s heard it in, so I know he’s just parroting. This he said in his own voice. I could chalk it up to a fluke, but then he washed his hands and brushed his teeth without problem or prompting. He quickly put his pajamas on and jumped into bed. Words plus action made me take what he said seriously—he really felt remorse for having such a huge meltdown. I was really blown away by this small window into his mind. He really knows in the moment or right after that screaming/crying/pushing is not what he’s supposed to be doing—or what he really wants to do—but he just can’t help himself. I wish a neurologist or psychologist could explain that better to me—tell me what’s happening in his brain during episodes like that. It’s heartbreaking to know that even when he doesn’t say things like “I’m sorry,” he might be feeling incredibly bad for his behavior and regrets disappointing people that love and care about him.

Remembering that he feels remorse and (mostly likely) can’t easily control himself in these moments make them easier to handle. Most of the time.

Springboard for Post: The Special in Special Needs

According to an online etymology dictionary, the first recorded use of the word “special” in English was around 1200 and meant “better than ordinary” from Old French, especial, “particular, unusual.” Around one hundred year later, it seems folks used it to mean “marked off from others by some distinguishing quality.” In 1972, “special education” was coined to refer to those whose learning is impeded by some mental or physical handicap.

I both love and hate the word “special.” My distain for it starts, I think, with the sound of it. For some reason, my mouth has a tough time with the second syllable and I tend to “shhh” it out a bit. I have to concentrate to enunciate clearly. Plus, the word—even when pronounced properly—
sounds soft and precious, like something one would aspire to be, like someone a person would want. I don’t feel that Holden’s challenges make him “better than ordinary” (although other qualities do, of course!). To be honest, raising a Special Needs Child doesn’t feel special. I love parenting Holden and he’s an incredible kid; I feel lucky to be his mom but not lucky that my child has to suffer. When people say to me, “God wouldn’t give you something you couldn’t handle,” I want to scream in rage. I calm myself down by imagining a white-bearded man in a long flowing robe going through a Divine Rolodex saying, “Okay, okay. Who gets the next kid with epilepsy and LKS? Christine? Totally. She can handle that as long as I don’t give her any more kids after that.” (Remember: raw and honest, raw and honest…take a deep breath.)

I wish we could go back and use the words closely associated with “special” in 1200. Perhaps the Old French used the word as I wish to use it: My son has particular needs; my son has unusual needs. These communicate for more specifically than “special needs.”

But now the phrase/word is so common that it’s become code for parents and people “in the community” of Special Needs. And I think those are the meanings that circulate—particular, unusual. Last weekend, I took Holden to the annual Arts Festival in Brookings. We navigated the crowds and the mud-paths (it rained over three inches the night before!) with relative ease—I even got to glance at some of the crafts for sale—until we passed the back of the face-painting booth. Holden ran up to it like a linebacker blitzing into a line of scrimmage—ready to cut in front of all the other kids and snag a seat. When I stood between him and the seat, he screamed long and loud; when I looked up, twenty concerned faces were staring at me. “Don’t worry about it. Totally normal. Happens all time,” I said, Holden still pushing against me to get into the open chair. (I felt a lot like Leslie Nielsen’s character in Naked Gun 2 ½ “Please disperse. There’s nothing to see here.”) I finally got Holden to take his actual place in line, and he played with his iPad until it was his turn. As he squirmed into the spaces between the tightly organized tables to take his seat, I followed. “Is it okay if I stand next to him?” I asked the woman with the palette of paint. “Yes. And don’t worry. I used to teach special ed.” Code. Code that meant: I understand he has particular needs and I won’t expect him to behave like a typical eight-year-old. Code that meant: I will watch the ways you communicate with him and take cues from you. Code that meant: I will interact with him without judgment and with extra patience.

As soon as she said that, I exhaled a ton of stress. I spent the next few minutes just happily watching Holden get his face painted instead of looking for ways to manage his public interaction.

The “Code of Special” is extra-important for folks whose “particular needs” aren’t obvious by looking at them. Later on in the afternoon, I remembered this positive moment when confronted with judgment. A woman shopping next to me in an art booth looked at Holden (carrying around his iPad) and then looked me in the eyes then back at Holden, shaking her head and clicking her tongue. Perhaps I’m misinterpreting it, but it felt like she was chastising me for allowing my son to have ‘screen time’ at the Arts Festival.

I’m interested in hearing other takes on “special.”

Springboard for Post: Acknowledging the Bright Moments

Today at lunchtime, Holden walked into the kitchen and sat down in the chair across from me:

“So, Mom, I’ve been doing some thinking,” he said.
“Really, Holden? What have you been thinking about?” I asked.
He looked at me, silent.
I looked at him, eyebrows raised.
“You’re having thoughts? What’s on your mind?” I tried again.
He looked at me, smiling.
I looked at him, waiting. I imagined what his thoughts could be about. Swimming? Summer school? Lunch options? The working status of his iPad that he took with him into the shower in the 15 seconds I was upstairs to switch laundry? An analysis of the literary allusion in a much-watched television show, Ben 10 (Ben Tennyson)? His own opinions on the use of narrative in architecture that he heard his stepfather, Brian, and I discussing yesterday?

He never finished his thoughts. But I wrote down that lovely, lovely, lovely question. So round in its completeness. So rich in its possibility. He’s having thoughts. He just can’t get them out.

I remind myself of these bright moments often because the difficult moments can easily crowd them out. I think this is because of the always-present stress and the acute moments of crisis that occasionally arise can send me into a tailspin. The stress can crank up and up and up and even when there’s nothing in the present moment to be stressed about, I can still feel stressed. One of the predominant words I’ve started to use in relationship to Holden’s LKS is “fluctuate.”

Take, for example, Sunday morning. The three of us—Brian, Holden, and I—left for long bike ride. (Brian attaches a ‘half-bike’ to his bike so Holden can pedal and participate.) When we got to the Dakota Nature Center, we decided to rent a canoe. All life-jacketed up, Holden sat in the middle of the canoe on the floor while Brian and I paddled. I was 90% sure we’d land in the water (stress level activated). Sure enough, five minutes into the jaunt Holden wanted to stand up in the canoe. He stood halfway up and paused. We talked him back down. Then, he put his hand in the water and just enjoyed the ride for what seemed like a long time—ten minutes, perhaps? I took it in: the breeze on a sunny July day—a perfect 75 degrees; a cloudless blue sky; the smell of cut grass; a fish jumping out of the water; the soft splash of the canoe paddle; various birds, patches of wildflowers along the perimeter of the pond. Even if we go in now, I thought to myself, I will still have these ten minutes.

I was astonished when we made it through a 15-20 minute canoe trip around the pond and back to the shore without Holden jumping in or the canoe tipping. (Let me remind you how “impulsivity” and “decrease of the ability to inhibit inappropriate behavior” are issues with over 50% of kids with LKS and Holden for sure). We rode all the way back into town, where we stopped for coffee and a treat. Awesome.

After that, of course, the day fell apart. A trip to get sandwiches was stressful at best. Holden’s whining increased. I’d planned on taking Holden to see “Shrek, the Musical” that was being performed on campus. Brian said, “Are you sure taking him to the theater is a good idea?” I replied, “I won’t know until I try.” I soon found out. We tried walking across campus (we live on the edge) but Holden sat down halfway there, stretched out on the concrete, and refused to stand up. Yes, he wanted to go to the theater. He just wouldn’t get up and walk–there or back home. He sat on the ground for ten minutes. I just couldn’t motivate him to get up. Brian picked us up and Holden rested on the couch for a couple of hours watching a movie. Still, it took me hours to unwind from the botched walk, etc. (The “etc.” to be honest was two swings at me followed by a deliberate stomp on my sandaled foot.)

When I reflect on the weekend, it happens like this: A montage of snapshots and mini-videos that capture the “bright moments”: canoe trip, bike ride, Holden listening to music at the Arts Festival (the band played “You are My Sunshine, which I always used to sing to him when he was a baby,) etc. But these moments happen amidst stress—they are, indeed, glued together by distress. My body reminds me: difficulty sleeping, aching back from trying to pick Holden up, faint bruise on my foot. Neither the distress nor bright moments can be elided. And I guess that’s just the way it goes for now.

Springboard for post: degrees of change

I wrote this poem two days ago–revised it a bit. Mostly to condense it down and work with line breaks. I know that literary journals won’t often publish poems that have been published online first (even self-published for that matter) but these are early drafts. And besides. The timing of these poems are important.

This poem led me to a series of questions about myself that I have yet to answer: How much can I change / adapt / alter myself/my knowledge/ my ways of being in the world in order to be the best parent I can be for Holden? It is even possible? Ideal?

Slow Wave and Spike As Metaphor

It happens like this: there’s an accumulation
of information, a wave that moves from your
unconsciousness to consciousness slowly.
Your preschooler turns away from Want to go
to Dairy Queen? without an answer. He mimics
dialogue from Monster’s Inc. and recites Yoshi’s
Feast after breakfast, in the car, as he falls
asleep. One morning you know something’s just
not right: blank stares, locked eyes, what is seen
evidence of what is unseen. Then, one day,
a spike. Your child drops a tall glass of water,
shards of sharp confetti on the kitchen floor.
He plunges his whole self toward into the pool
of sparkly ice, your body a wedge between
his screams and the glass his wants to eat.
As you sweep it up into a skillet with your bare
hands, he climbs over your back. No words
work. This is not just a preschooler’s meltdown.
But what? These slow waves and spikes happen,
over and over, not as many as those he experiences
in his sleep, but enough for the realization
to crystallize: What you know will no longer
suit you. What you know to be true about yourself
doesn’t fit this child. That broken paradigm
sparkles on the floor. Leave some cracked glass
to remind you: it’s not just your dreams that must
be revised, it’s the intellectual surface—learning,
writing, words—upon which you stand. Start
over. Muster energy to relearn. You can’t ask
your child to do what you cannot do yourself.

Springboard for Post: Comebacks

I remember talking to Tomkin Coleman from Pawsitivity Service Dogs (http://pawsitivityservicedogs.com) for the first time on the phone last September. He told me that Holden’s application for an assistance dog had been approved, and we were chatting about Holden’s challenges—and mine. In the midst of describing what other parents felt were the advantages of assistance dogs, he landed on an emotional point for me. “When the dog is out and about with his boy and wearing the service dog vest,” Tomkin explained, “it lets people know that things are not what they seem.”

I couldn’t hold back my rush of tears. Finally, someone acknowledged what I hadn’t put into words: that awkward pain of dealing with a public meltdown or tantrum. I recall one afternoon in the “lobby” of Hy-Vee, our grocery store in Brookings. Holden and I made it through the shopping and paying parts of the endeavor and he was sitting inside the cart basket (which, as I’ve explained in another blog post, isn’t our usual procedure). It was cold outside and I had only a few bags, so I needed to get him out of the cart or else we could be sitting in the cold parking lot for awhile (in the thick of a bad day, weather doesn’t register for Holden). He wouldn’t get out. He’d wedged himself into the cart, and his three-quarter length winter coat and snow boots only made the situation worse. For at least ten minutes (it felt like thirty, so it must have been ten), I tried to get him out. I used words. I used sign language. I used threats. I tried to bribe. I used every conceivable method. Each attempt to get Holden out was met with a scream and a “No!!!” or a variation of “Leave me alone” or “I don’t want to.” It was rush-hour at Hy-Vee and it felt like the entire town of Brookings was witnessing—and judging—our scene as they walked through the lobby. Finally, I sat down on a bench to calm down. I let a few tears slip out. When I looked up, my friend Natalie was walking toward me, which was a shock because she lives 50 miles away. She asked if she could help. I gave her the bags and then wrenched 60-pound-plus Holden out of the cart, trying to keep from getting kicked with a snow boot (which he’d done successfully twice before). He was crying—the “stubbornness” moving into exhaustion. The three of us made it out to the car just fine after that, Holden clinging to me in the cold.

For so long, I felt guilty about that pain of embarrassment. It felt selfish and immature—it was Holden going through the rough moment, not me. Why should I care what others think? But the truth was that I did care. I knew that others judged my ability to parent based on my son’s behavior. And sure, most of the time someone who watched long enough would know that “something wasn’t quite right.” But otherwise, there are no physical markers of Holden’s “special needs.”

Imagining different ways to deal with these public moments have been helpful. I have a “list” of different narratives to explain or frame Holden’s behavior for others—depending on the age of the onlooker. Once, in a shopping mall, a boy Holden’s age attempted to make friends with him during a meltdown. Holden reacted shyly. I told the boy “Holden’s brain works differently than other kids.” But apparently, so did his (according to his mother) which is why he recognized a kindred spirit in Holden. With adults, I usually say “He’s got a communication disorder” or “a rare form of epilepsy that affects language, memory, sleep, and behavior.” I want to write a list of snappy comebacks for folks who glare, but I’ve only gotten one so far:

My child as a severely, severely, severely abnormal brain; what’s your excuse for rude behavior?

Honestly, I fantasize about saying this but I haven’t yet. But I’m glad I have it rehearsed and practiced, ready to deploy. Because honestly, sometimes it takes a lot of energy to just decide to leave the house. A few weeks ago, I was talking to another mom with a son with LKS (they live in California). She, too, shared the difficulty deciding to leave the house or not. “We can’t be prisoners in our own homes,” I argued, but mostly to convince myself. “And it’s not fair to our kids, who need experiences in the outside world to be stimulated and grow.” Plus, I admitted, sometimes we just need milk and bread.

Springboard for post: irony

In accordance with my promise for “the raw”–here’s the first draft of a new poem:

The Names of Things

The woman named her child Holden
not because of the book character
not because of the soap opera character
but because it sounded solid, stable,
because it meant “from a hollow
in the valley” and she could imagine
calmness and graciousness—also its
meanings—she could imagine those
valleys of her childhood, the places
she camped between hills of forests
and the peace she found there looking
at the stars, possibilities endless, how
she stared into the campfire imagining
that in that space was God—the infinite—
and she could see infinity beyond the space
of flame and stars, and she wanted to give
that to her son. It wasn’t until later,
when she Googled epilepsy for the 1,000
time hoping to find another way in to
understanding, that she saw Epilepsy:
from Greek: epi “upon” + lepsis “seizure,”
from leps-, future stem of lambanein
“take hold of.”