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
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.

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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.

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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.”

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Springboard for the Post: Advice for the Friends of Parents Raising a Special Needs Child

I had three or four different ideas for the “hook” of this blog:

Top Ten Things You Can Do to Support Your Friends Raising a Special Needs Child (trendy but over simplistic)

Good News/Bad News: Good News! You’re not raising a special needs child; Bad News! Your friend is and it’s tough on your friendship
(catchy but the undertone of sarcasm could be mistaken for anger)

Friendship for Dummies
(simply insulting and not applicable–my friends may get offended)

Parenting a special needs child (usually) involves a huge learning curve; reading and research means less time for being social with friends. It gets even more complicated when parents work full-time. For me, over the last four years, this has meant combing blogs, websites, discussion boards, and library databases for information about epilepsy, epilepsy syndromes, and LKS in particular. I’ve slogged through medical articles too, again and again and again. In the last year, this has also meant learning American Sign Language—a commitment of six hours a week. And this is just a quick list.

Parenting a special needs child (often) involves time-intensive visits to doctors, specialists, and therapists. I travel four hours to St. Paul, Minnesota to see Holden’s team 3-4 times per year for 2-3 days at a time. Again—less time for spontaneous coffees, lunches, or meetings at the bar. ☺ But because the emotional intensity of these trips is tough to unwind from, these might be more needed than you know.

Parenting a special needs child (often) involves a huge shift in day-to-day life routines. For me, this means a lot of worry and time spent focused on Holden—whereas most parents can tell their eight-year-old “great ready for school” and getting dressed will ensue, it doesn’t work that way for me. Holden needs one-on-one supervision and prompting. For example, this morning, he woke up at 3 a.m. I thought I’d gotten him back to sleep around 3:15, but just as I dozed off around 4 a.m. I heard him open the back door. I rushed downstairs to find him sitting in my car—a new obsession for him. Sometimes it takes a long time to get places on time, and even longer to make dinner or do household chores when he flits around the place. Again, this eats away at time for social interactions. Even phone calls get difficult to place, often because of the emotional energy needed to place them. Maybe it’s just me, but I often worry about venting too much, saying how shitty my day was or how stressful it was to have your child screaming every two-three minutes for two hours about the mosquito bites “burning” on the back of his neck. And to gather the undivided attention is tough, too; many times I have to put down the phone to redirect Holden. When I do need to talk sometimes, I don’t want to burden my friends. These stories MUST get old. So keep in mind: even if your friends can make the time to talk, they might be having a hard time placing the call.

Parenting a special needs child means an increased necessity to make more times for habits, activities and techniques to keep oneself strong and healthy. Sleeping and eating right are essential. Although friendships are definitely a part of healthy practices, sometimes they take a back seat to exercise, meditation, or spiritual~religious practice because without a parent working on being more stable and healthy mentally, spiritually, and physically, the Special Needs Child suffers more.

Parenting a special needs child (usually) involves the emotional life of the parent being stretched very thin. For me, the roller-coaster effects of LKS—Holden has good moments in bad days, good days in bad weeks, good weeks, and lots of ups and downs; this requires a lot of strategic flexibility in the ways I plan, schedule, and otherwise “approach” life. My emotions often reflect this. I get happy when Holden produces some sort of complicated language “Mom, are you still in there doing the dishes?” then it crashes when he dumps his dinner on the floor because I won’t let him play with his iPad as he eats (and because he can’t tell me how he’s feeling). Then I get frustrated/angry/sad. The fact that Holden’s LKS will resolve during puberty but still leave some sort of brain damage (resulting in residual language issues) is both good and difficult because I don’t know exactly when this will end or what the effects will be. Sometimes when faced with a challenge, I’ll just dig my heels in and “get through it,” but this doesn’t feel like an effective strategy for parenting through LKS. This takes an emotional toll.

During the writing of this blog post, my best friend Rochelle called me. When I told her what I was doing, she said, “A list of strategies for friends would be great.” Brainstorming, I listed these out as ideas for “Friends of Parenting Raising a Special Needs Child” to her:

1. Send emails.
2. Call them.
3. Ask them over for social engagement (both with or without Child).

She interrupted me. “Of course. Those are common sense. But they aren’t what keeps people from reaching out.”

Immediately, I knew she was right. It was the difficult feelings: guilt, sadness, inability to “fix it” in any significant way, managing one’s own emotions and mustering up patience, etc. It takes work for the friends—more work then usual.

And I don’t know strategies to solve this, really. But here’s a brainstorm:

1. Honesty—naming and voicing the complex feelings you have about being a friend to a parent raising a Special Needs Child.
2. Inquiry—asking questions you don’t understand about the disability/disorder/special needs.
3. Reflection—thinking about what you would want/need in the same situation.
4. Cultivate flexibility—keep an open mind about interactions.

Thanks to all my awesome family and friends—without you this whole “journey” (ha! love that euphemism) would be a hell of a lot tougher.

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Springboard for the Post: the murky realm of behavior

I remember taking an educational psychology course in college and learning the “behavior” theories. I babysat for my psych professor and his wife who shared on office on campus, and often I would watch their little girl there while they had meetings. Even as an infant, she was a subject of their experiments: black and white swirls attached to her crib, funky mobiles dangling from the top of her stroller. They wanted to stimulated her brain, and I always wondered about what her parents discovered to “motivate” her as she got older.

In regard to one of my posts, Dimi asked some great questions about how I respond to Holden’s behavior. And the crux for me is motivation: how do I know what motivates Holden?

Anxiety-producing moments: transitions

Last week we were going to one of Holden’s favorite places–the Children’s Museum. He didn’t want to go get out of the car, and once we did, he ran across the parking lot. I caught up to him and looked him in the eye: no running away, I said with verbal words and sign language. He nodded, “Okay, okay.” We went in, but he ran past the check-in kiosk to his favorite area. I tried to get him to come back with me and check in, but he wouldn’t comply, so I had to carry him back screaming “Noooooo!” By now, my blood pressure was elevated and I was stressed. And already exhausted. I realize that most parents at this point would leave the museum altogether, and the thought crossed my mind. But I wanted to give Holden another chance. I asked him to give our membership card to the clerk, and he did, waiting patiently for her to give it back. “Good job, Holden! Good job waiting!” I praised him.

For the rest of the visit he did a good job complying with directions and rules, and I reinforced those good moments with praise. He even asked other children if he could play with them. When he jumped into a part of the water exhibit that’s off-limits, and I counted backwards from five, telling him that if I had to get him, we’d both leave (both in sign and words). Each time he complied. And because he forgets a lot, and because of his impulsivity/attention issues, I’ve grown patient with the number of opportunities he gets to demonstrate the better behavior–and so I can see behavior to praise.

It’s harder when there isn’t something inherently motivating in the activity he’s engaged in. A month ago, we were at the grocery store and I allowed a tweak in our “grocery store procedure” which I regretted. I let him ride inside the cart. By the time we got to the end of the produce aisle, he’d thrown a bag of tomatoes out of the cart, opened the bag of carrots and munched one, and sent a package of croutons sailing–only to land at the feet of a very irritated shopper. Even though I was using ASL and verbal words, he was tired and grouchy. And what was motivating him to behave? He struggles with time–“before” and “after” and “later” are just starting to be concepts he gets. Telling him that he’d get to watch a movie when we got home if he behaved wasn’t going to work. So to hauled him out of the cart–literally– and went back to our usual procedure–having him ride on the cart right in front of me. That way he can’t grab items, and I can move quickly. Sometimes I let him get an item off a shelf and then return to the cart. Procedures and repetition often work.

If I didn’t “pick my battles” with his behavior, we’d rarely leave the house. If he’s aggressive, I tell him to stop verbally and with sign. Sometimes I need to put my arms around him to pin his arms (a “hug” from the front or behind) or I wrap him in a blanket. Or just put him in his bedroom and let him meltdown there. This behavior is decreasing, and I don’t see it often anymore (as in multiple times per day). He’s still being loud, shouting, and not complying with directions, however. This stuff feels “beyond motivation” to me because he doesn’t seem to be completely in control of himself in these moments.

When he does seem to have control, I know that threatening to remove his iPad from his hands often works to motivate him but beyond that, there’s rarely a consistent “motivator.” Does praise work? Does punishment? Does he always understand what’s at stake, and does “behavior theory” work if he doesn’t?

I also have started making him make amends for messes he makes and apologizes. But I think that’s an opportunity for another post….

When I find is the best way is to prevent opportunities for bad behavior by reducing his anxiety and easing transitions by doing the following:
1. Reviewing rules and practicing during low stakes moments.
2. Using sign language.
3. Using photos of activities.

That’s all for now… a rather lengthy post!

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Springboard for Post: Learning Objectives

Yesterday, I told Holden’s summer-school teacher—a newly minted one fresh from the halls of academia—that learning objectives are “shit.”

Yes, that’s the word I used even though I develop my curricula around learning objectives and love, love, love writing them for the university classes I teach. I even use them in my “daily” plans for class. Learning objectives are fun, fun, fun.

Except when they are shit.

For “special needs” children, Individualized Education Plans (IEPs) are used to guide their learning. A whole team of professionals are involved in the creating of IEPs—parents, teachers, counselors, psychologists. When we meet to create the objectives for Holden’s IEP each year, I’m always frustrated. How does one set goals for a child whose disorder, by its very definition*, disrupts progress? His neuropsychologist explained Holden’s active LKS time as a “hiatus” from learning. Yet still, I think I see him learning: he develops new relationships with people and animals in his life; he builds on skills, especially with puzzles and videogames that require basic strategy (Angry Birds and Plants vs. Zombies); he memorizes books and scripts from cartoons and his favorite movies. Maybe these are exercising the abilities he’s sustaining and recovering; maybe he’s learning. One can’t easily test a kid with Holden’s particular manifestation of LKS.*

I remember feeling, as Holden’s summer school teacher may feel, the pressure of “objectives” and being a teacher whose students “meet objectives.” When I arrived at Tarsus American College in 1996, a newly minted teacher fresh from the halls of the University of Northern Iowa, I learned that I had to get my daily lessons plans approved by the Director (principal) each week. Furthermore, the Turkish government looked over them each year and stamped them with an official seal. This terrified me—such scrutiny!—until I learned that this was an exercise in bureaucracy. Our Director gave them a cursory glance, and some of the Turkish officials didn’t even read English.

Perhaps my experience in Turkey taught me to look for the “satisfying bureaucracy” element of educational policies. I do understand that Holden’s amazing teachers need some sort of guide to help him—so IEPs with measurable objectives are important—they just aren’t the Gold Standard. Learning objectives become “shit” when they get in the way of possible learning—when they lock down instead of open up by strangling the learning possibilities that bubble up from the organic/dynamic/alchemic synergy of teacher + student + material.

Certainly, my experience teaching for nearly two decades has taught me to “meet the student where he’s/she’s at.” And to look for those moments of “organic learning” when I have to throw out my objectives and plans because something different—and equally valuable if not more—is happening. I’ve thought a lot about “where Holden’s at.” My paradigm for his learning objectives is one of “exposure.” I expose him to learning opportunities and activities where he can engage with language, culture, people, and texts. Whatever gets traction—whatever gets and keeps his attention for more than a few minutes—well, that is what he gets “exposed” to. Will he remember? Maybe. Will he be able to tell me about it? Doubtful. But for right now, any other way sets both of us up for failure. Any other way, with LKS, is madness.

*LKS is a rare neurological disorder characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. Often, behavioral and neuropsychologic disturbances accompany the progression of LKS. Behavioral issues are seen in as many as 78% of all cases (Holden +). Hyperactivity (Holden –) and a decreased attention span (Holden ++) are observed in as many as 80% of patients as well as rage (Holden→ rare), aggression (Holden→ occasionally) and anxiety (Holden in regard to transitions). Impaired short-term memory is a feature recorded in long-standing cases.

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Along the lines of jealousy

Phrase that Sprung Today’s Post: Blatant Jealousy
I must admit that I’m jealous of the stories I hear from friends and acquaintances about all the Cool Stuff they do with their kids. Such as create castles out of cardboard boxes. Or five-course meals for Father’s Day. Or read a series of books together. I never read Harry Potter because I was saving that for when Holden turned five or six, and then we could read together. But Landau-Kleffner Syndrome put the big ka-bosh on that. LKS does that A LOT. I’m jealous, of course, but then I’m reminded that I shouldn’t try to live vicariously through my kid. If I want to make a papier-mâché version of the solar system, I should go right ahead and do that. Even without LKS, maybe Holden wouldn’t like craft projects anyway.
It’s easy to slip into these mini pity-parties for myself. I planned to be a Cool Mom. An Active Mom. A Creative Mom. I think, when I get selfish in this whole “raising a kid with special needs” “journey” (excited to blog on different days about those words and phrases in quotes) it’s because I don’t get to be the kind of parent I always imagined being. There. I said it. Instead of researching “101 Ways to Spark Your Kid’s Creativity” and ticking those off our summer To-Do List, I’m researching echolalia and anomic aphasia and analyzing Holden’s contextual use of visual learning prompts. It sucks some of the time. Only some of the time. As a total nerd, I like research and I get lost in all the interesting things I’m learning about the brain and the body and how it all works. I get excited and then I remember why I’m doing it, and I’m like, ‘Oh, yeah. I’ve got to apply this’ so I can understand what’s happening with my own offspring.
My friend in Toronto, Karen Gold, studies all the ways that folks narrate illness, disability, and trauma. I’m trying to crowd out what I’ve learned from her as I write this blog post. I don’t want to “meta” myself. And I’m trying to ignore the creative writer in me that says “give them scenes, give them literary moves.” Those are for later, I suppose, in my poems and creative nonfiction. Raw For Now. I just need this forum to get this all out, honestly. When I feel anger welling and/or the aching tickles of sadness creeping toward me, I need to do something with it. And I’ve decided that this is the It.

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