special needs

Somehow I’ve never quite warmed to using the term “special needs.” I understand that it is the current socially accepted, politically correct moniker for disabled people, and a departure from harsher terms such as “handicapped” or “retarded,” (or the things I sometimes think in my darkest moments such as “messed-up, basket-case, train-wreck.”) But I feel like it sugar coats the real—sometimes colossal—problems and challenges disabled people have.

I’m not sure if the term “special needs” really benefits kids like Calvin. Perhaps it’s more useful to others. As an umbrella term, “special needs” couldn’t be more vague, allowing society's mainstream to avoid—avert their gaze—and ignore half the reality of what is often a painful, sometimes repulsive, pathetic situation. “Special needs” holds kids like mine at arm’s length from others—sequesters them—and perhaps aids others in feeling more comfortable. In my cynicism I imagine folks thinking, “that kid is special ... isn’t that quaint.”

I prefer just saying it like it is. “My son has pretty grave neurological problems, retarded development and intractable epilepsy—he can’t talk, can’t walk by himself and is still in diapers.” It takes longer to get out, but accurately describes my boy. And if the person I am speaking with doesn’t react by staring blankly open-mouthed or saying "huh" and immediately changing the subject, I will then add that, though Calvin is seven going on two, he has come to a place where he seems to be a pretty happy, very affectionate child ... which brings to mind another thought.

The other day an acquaintance kindly wrote to me about children with special needs. I genuinely appreciated her intentions, which were warm, kind words of concern from an obviously generous heart, though I couldn’t agree with some of what she had to say. She wrote, “I believe God gives these kids such a sweet disposition to make the journey easier.” I’m not religious—my view of a celestial essence having everything to do with the extraordinary chance of nature and nothing to do with a man upstairs calling the shots. But my impulse—nonetheless—was to think, why didn’t god save everyone a whole lot of grief, burden and suffering and just not give these kids such heinous afflictions to begin with? Moreover, these “special needs” children don’t all have sweet dispositions—I know from experience—though society might have us think so perhaps to assuage the guilt factor. My son has run the gamut: from colicky infant to irritable, uncomfortable, suffering “toddler” to completely-fried-zombie-kid and finally to a pretty happy, albeit stubborn, sweet little boy—at least for the time being.

So anytime I hear the term “special needs” I kind of cringe, and then do my best to let the ordinary folk know that—though Calvin is an extraordinary cutie-pie—he is a pretty messed-up kid that one doesn’t just fold up nice and neat and put away in the “special needs” box.

photo by Michael Kolster

day eleven

A pretty good string of days ended with Calvin’s seizure yesterday morning—day eleven.

I knew something was amiss when I was trying to feed him breakfast; he was a whirling tangle of spastic limbs—uber-hyper. Nearly poked me in the eye with an errant fist. So that he’d let off some steam I slid him into his jump-up. Almost immediately he started shrieking. His body tensed, teeth clenched in a devilish grimace, fingers working madly, obsessively rubbing together, while he pounded the floor with booming heels. I hadn’t seen this irritable behavior in days and it served as a bad omen.

While sipping my cold coffee on the couch I noticed Calvin still. I called his name to see if he’d react, his back turned to me, slumped in the jumper sucking his thumb, as he often does. No response. So I lifted his face to mine, pried out his thumb to see bluish lips and flushed cheeks on a pasty complexion. As quickly as I could I unbuckled the straps, hoisted him out and over to the couch. Though it began like a partial seizure I knew it was building into a nasty convulsive tonic-clonic.

I grabbed my camera from the coffee table and filmed it, placing my other hand softly, yet firmly, on Calvin’s shoulder as the seizure blazed for three more minutes. The color of life fades sickeningly from his face until he looks like a zombie. His eyes quiver and blink, in what appears as time-lapse, and stare off into nothingness—like hollow orbs—all at the same time. The docs tell me he is unconscious, but I always wonder, especially when I witness the frightened expression on my boy’s sweet little face.

So, eleven days since the last seizures and I can’t really say that the increase in drugs is helping much. These relentless seizures—they just keep on coming no matter what we do. Five years of them. Hundreds. Unfortunately Calvin has to be a guinea pig. We try one drug until we’ve maxed it out and then we try another—sometimes as many as four at a time. We try special, rigorous, exacting diets, and then we try another. Nothing has worked. He’s taken eight different anticonvulsant medications since he was two years old. Who knows what they’ve done to his developing brain? I know in my gut that the drugs are in great part why he can’t walk by himself, though he’s seven years old.

It’s god awful, this epilepsy, and it’s looking more and more like Calvin has been handed a life sentence. But we’re right there with him, hand in hand, all the way.

video: this morning's seizure

Caution: The following is a video of the seizure Calvin had this morning. Please know that it may be disturbing for some to watch.

Please share Calvin's Story with others. We need to find a cure. There's no time to waste.

suffering

I flew home from San Francisco for Thanksgiving the year my dad was seventy, less than two months before he died. My friend Scott picked me up from the SeaTac airport. We drove on the curving highway, across bridges, through suburbs and out into the blackness of the Cascade foothills. I remember feeling anxious to get home, knowing my dad had been having a rough time with the cancer and the chemo in what was his fifth year since being diagnosed.

When we arrived I hastened to the door as Scott grabbed my luggage. My mom greeted us. It was clear by her body language that dad wasn’t doing too well, so I hugged and kissed my friend goodbye and quietly shut the door behind me. She told me she had just given my father a morphine suppository.

The house was unusually dim. I stepped quietly into the family room where a rolling fire licked the glass of the wood stove. My father was kneeling on the floor, resting his torso across the denim couch, his slippered feet pigeon-toed on the carpet behind him. His orangey sweatpants—the ones with the white racing stripes and wavy nylon zippered leg openings—weren’t hitched up all the way, exposing his cotton boxers, akin to the trendy way boys and men do today. He was trembling and restless, moving his head around, his cheek flat on the cushion, trying to get comfortable. I could tell he was in immense pain by his shallow panting breath and tightly closed eyes. I wasn't sure he was aware of my presence.

I spoke softly to him, told him I had just come home for Thanksgiving. I knelt down next to him and caressed his hunched, bony back through his sweatshirt. I told him I wished I could take his pain away. He had no words. It was our most intimate moment together.

Often I think of the pain and suffering that my dad endured, so needlessly and at a relatively young age for such a vigorous man. No reason. Then my thoughts drift to so many others—my friend’s little niece who painfully—unsuccessfully—battled leukemia, and her five-year-old brother who had brain tumors and endured horrific treatments. I think of my close childhood friend who must cope daily with rheumatoid arthritis, and at such a young age. I think of my sister-in-law’s best friend who has been fighting breast cancer for nearly five years—now stage four—while raising a family as a single mom, and of my friend’s little boy who endured a life of pain and discomfort that no one completely understood and that came in reliably ceaseless waves.

And then there's Calvin, who I see—intimately—pummeled by the seizures, the drug side effects, the painful blood draws. Then I realize that one thing we all have in common, that makes us human, is suffering of one kind or another at some point or another. It is unavoidable, not something we can control. But what I learned that I have the power to control is to sooth the suffering of others, stroke their backs, speak softly to them or just listen, and try to make it better, if only just a little.

photo by Michael Kolster

not one day goes by

Though my love for Calvin is immeasurable and continues to grow, not one day goes by that I don’t wish he was normal, healthy, complete, able to run, play, jabber—and dream—and not have to deal with the wrath that is epilepsy.

the special mother

I am not a religious person and I most definitely do not believe that things happen for a reason—that there is some grand design which caused Calvin to be disabled or that brought us together by some divine providence. But I had to grin with amusement when a friend sent me the following story shortly after Calvin's second birthday:

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

photo by Michael Kolster

bully dunk

When I was about Calvin's age, shortly after I had learned how to swim, I went with my family to the summer league A championships. At the time I was a B class swimmer, fast enough to earn a gold B champ medal in the 25 yard breastroke but not fast enough to compete with my siblings in the more esteemed A meet.

The competition was held at an outdoor facility that had two pools, one roped off with blue and white plastic lane-lines for races and the other used for warm up and cool down. This second pool had a deep end for diving where I was passing the time frolicking in the cool blue water with some of my teammates.

One boy, who was a year—maybe two—older than I, was hanging onto the edge next to me. For no apparent reason he slapped his hand—elbow up—on top of my wet head and dunked me under, palming my skull like a basketball. Reaching up, my fingers were mere inches from the rounded cement lip of the pool. I scraped and scratched at the slippery tile wall as if I were sealed in an aqua blue coffin, no one knowing my terror but me. Looking up, as my bubbles ascended then boiled at the surface, I saw a blurry Van Gogh sky, swaths of painterly blue and white eerily rippling at my frenzied fingertips. I was petrified and too panicked to understand that if I dived deeper I could escape the boy's grasp and pop up safely a few feet away. I was out of control, completely at the mercy of this wiry bully boy. He released me, just as my lungs had begun burning in my birdlike chest. I scrambled up and sprung out of the pool panting, never to get within arm's length of him again.

I wonder if Calvin feels this same sense of panic, hopelessness or fear when he is having a seizure. Does his vision of the world warp and blur? Does he feel as if he is drowning, unable to take in air to sooth his burning, collapsing lungs? Do his muscles cramp and leaden? Does he try in vain to cry out for help only to be smothered by the suffocating torrent, the bully dunks that relentlessly seize his brain?

Though I don't really believe it, I can only hope that he simply sees and feels a beautiful Van Gogh sky.

detail (sky) Green Wheat Fields by Vincent Van Gogh