Editor’s note: This is an old story about my son, Joey, written when he was three years old for a magazine that used to pay my salary. He turns 16 today, my remarkable boy, a son who will always keep me in his orbit. My wife insists that he be called Joe, but to many people he’ll always be Joey, and I don’t have a problem with that. It’s his heart and soul and strength and love that define him.
He speaks in a sweet little boy’s voice that exists in my dreams. “Wake up, daddy,” Joey says. “The Wee Wee Men are coming and I want to play Go, Go, Go.” I’m thinking or wishing: He’s here, right beside me. With the anticipation of a thousand Christmas mornings, I roll over to face him, sleepy eyes lubed by happy tears, brushed away by clarity when the 180-degree turn points me in the general direction of the truth. There is no happy little boy at my bedside. The clock radio’s red LED digits spell 2:17. Jane is willfully unconscious beside me; she knows it’s my turn to rescue our son, whose panicky crying, like mist with a purpose, found its way from his room across the hall into my trance. Stepping over moon shadows on the bedroom floor, I think: “Second half of ‘Futurama,’ then ‘Family Guy’ at 2:30. After that, whatever’s on ESPN.”
Evenings with Joey are measured in half-hour time slots. Jane prefers reruns of ‘Cheers.’ I like cartoons. Joey watches neither, because he can’t really see. Can’t walk, crawl or speak. Just wants to cuddle, maybe drink a bottle of milk while the rest of the world is sleeping. I think he finds the laugh tracks, the TV phantoms, soothing.
Somehow, when this kid was born on Aug. 6, 2001, three months ahead of time, we knew he was going to be special. He emerged from Jane naturally, looking like a sun-dried ET. But his body inflated under the protective glass of an incubator, and you could see he was uncommonly beautiful. The nurses in the neonatal intensive care unit tripped over themselves trying to gain Joey’s infantile, handsome approval. Thick, dark hair; large Mediterranean eyes with long lashes, dimpled (but rare) smile.
Joey was six months old when his doctor, Kevin Johnson, suggested something that had become apparent to us — our son was developing too slowly. Joey received weekly physical and occupational therapy at home, so we figured he’d catch up eventually. But sometimes his legs twitched spasmodically. His feet turned inward. He seemed frustrated most of the time: tense, scared, cried often. He couldn’t focus on your face, like he was underwater, living in slow motion. Joey’s physical therapist, Cathleen Barrett, was the first to suggest the idea of cerebral palsy (CP). We saw a pediatric neurologist, the extraordinary James Barfield, who eventually confirmed Cathleen’s suspicions for us.
Cerebral palsy is a broad term ascribed to chronic conditions affecting movement and muscle coordination. Caused by damage to the brain, CP can occur before, during or shortly after birth, or during infancy. CP, we learned, doesn’t get worse but has varying degrees of severity. Some people with CP lead normal lives, walking, communicating clearly. You might not realize they have CP.
Jane’s Journal: 5-10-2002 — Today we realized you were having seizures. This might explain why you’ve had trouble doing big boy things. This makes us sad because we know how hard you have to work and we’re beginning to see that you get scared because you don’t know what’s going on.
5-15-2002 — You had an EEG confirming what Dr. Barfield suspected. You have a form of epilepsy called infantile spasms or West’s Syndrome. The outcome is usually developmental delays, retardation and physical handicaps. You were supposed to sleep during the EEG and you were sleeping so deeply on our way to the test I couldn’t wake you. Daddy and I thought you might stay asleep, but you woke when we got to the exam room and you smiled and smiled. We think you were playing a joke on us.
5-29-02 — Today I gave you your first shot of ACTH. I hope and pray this works.
6-1-2002 — I woke up crying. It’s all Dr. Barfield’s fault. He was looking at your MRI and it turns out your brain has big pockets of cerebral spinal fluid where tissue should be. He said it was an injury that probably happened in the hospital from oxygen deprivation or infection. He said, “He won’t sit or walk.” He said, “He’ll have epilepsy all of his life.” He said, “Severe cerebral palsy.” In my head I was saying, “What happened to my baby’s perfect little head? His hair is so beautiful, his face is so perfect.” I was saying, “He’s Joe the Lion made of Iron.”
The Lion In Spring
The nickname comes from a David Bowie song, and though his Joe is a hard-drinking bloke, the name fits because our Joey has a lion’s heart. He also has spastic quadriplegia CP, which means all of his limb muscles get too tight, or toned — he does a terrific imitation of a surfboard. Joey has difficulty reaching with intent, but once he grasps something he has difficulty letting go. People often admire his strong grip, unaware that the portion of his brain that controls the “let go” command is on permanent vacation. CP is incurable, but extensive therapy could make Joey’s life easier, more productive. Our course of action, then — the same basic course followed by the 760,000 or so other CP families in the U.S. — is to re-map Joey’s brain through a variety of therapies.
Joey is a textbook example of CP’s many associated problems. He sees a speech therapist because he’s had, or still has, difficulty controlling his tongue, mouth, lips and jaw. He drools a lot. He has difficulty eating and we’ve finally decided to consider a feeding tube, which will allow us to insert nutrition right into his belly. Oh, he’ll still endure the physical struggle of eating because he has to learn to eat. But the feeding tube should help replace the calories he loses through his combustible mealtime tantrums, and the even more explosive tantrums he has in the stander, a device designed to help his legs learn how to bear weight. At 21 pounds, Joey is a skinny 3-year-old.
He can’t hold his head up straight for more than a few minutes, but he understands when we say, “Hold up your head.” It takes him a while, but he does it. And he understands when we ask him for a kiss. Joey gives great kisses. He has cortical vision impairment — sees well out of the corner of his eye, has trouble processing images right in front of him. He has trouble sleeping through the night, so we watch a lot of cartoons. One evening he started folding up in my arm, and twisting to one side, rolling his eyes. He came out of it with a frightened “How did I get here?” expression, then started crying. He had about a dozen of these episodes over the next few minutes, so I videotaped him with one arm while holding him in the other, showed the footage to Dr. Barfield. Infantile spasms.
Dr. Barfield prescribed ACTH (adrenocorticotropic hormone). We (and by we I mean Jane) gave Joey a daily shot of the steroid, alternating a different thigh each night. I held him down, she poked him, and I bandaged him; the definitive good cop/bad cop arrangement. The drug made him puffy, uncomfortable, more irritable than normal, and it compromised his ability to fight infections. So we kept him in a state of Howard Hughes-like sterility. By the end of the six-week course of treatment, he had grown so used to the daily shots that the needle didn’t make him cry any more — and for emotional reasons too complex to explain, that made us want to cry. But the seizures stopped. Joe the Lion made of Iron.
One of my primary roles is playmate. Together, Joey and I have devised several games that make him squeal. He may not be keeping me young, but he’s trying to keep me in shape. In Go, Go, Go, I lie on my back and bench press Joey up and down, swing him sideways in a variety of positions, until he starts running or crawling in mid-air. He shakes his body around, lunges forward, makes this huge, excited ‘Oh’ face. And when you say, “Here come the Wee Wee Men,” he smiles or giggles in anticipation of the walking, tickling fingers that tiptoe all over him, accompanied by my relentless, high-pitched cries of “wee, wee, wee, wee.” Basically, Joey loves any game that requires him to go fast, get tickled, spin, bounce, roll or spit up on Dad. “Typical boy,” his mother mutters.
I’ve got the easy job. Jane, however, is CEO of Team Joey. The former editor and publisher of our local newspaper, she gave up her career to take on longer hours for no pay. Jane coordinates Joey’s life — schedules and participates in his occupational, physical, speech and music therapy sessions, works closely with the teaching specialist, takes him to aqua therapy, takes him to school at Challenged Child and Friends in Gainesville (where she volunteers and sits on the board). She’s asked to participate on more boards than she has time for and serves as a parent advisor for Babies Can’t Wait (Georgia’s early intervention program for infants and toddlers with disabilities). She haggles with our health insurance provider, with state assistance providers, with anyone who needs haggling with. That’s a small portion of her Team Joey responsibilities. Jane also manages a husband and our college-bound, determined 17-year-old Samantha, who has fortunately inherited her mother’s brains. And Jane has invented a few new hours to take on the occasional freelance assignment.
An impressive roster of therapists and specialists work for Team Joey. All are lovely women, most have Disney nicknames — they do work for a 3-year-old, after all. Cathleen the physical therapist is Cinderella. Chanda the speech therapist is Snow White and looks the part. Vel the music therapist is Belle (from “Beauty and the Beast”) because the names rhyme. Laura the aqua therapist is Ariel (from “The Little Mermaid”).
These ladies, along with Paula the occupational therapist and Vicki the teaching specialist, use creativity, talent and love to put the pieces of the Joey puzzle together in an effort to make him as complete and self-sufficient as possible. Also, they teach us everything we can absorb. The average cost for Joey’s therapy exceeds $50,000 a year. That doesn’t include the cost of the orthopedic doctor, the neurologist, developmental pediatrician, ophthalmologist, gastroenterologist, nutritionist, orthotist, equipment, tuition and educational seminars for Mom and Dad. Thank God for health insurance, and Babies Can’t Wait, and Medicaid. Thank God for the Deeming Waiver.
In April, Team Joey suffered a devastating loss with the death of pediatric neurologist James Barfield, who told us about his cancer around the time Joey was coming off the ACTH. This is a huge loss for many special needs families in North Georgia, because Dr. Barfield really loved his job and the kids in his care. A day or two before he died, when it took him 20 painful minutes to shuffle the few yards from his car to the office, he was still seeing patients. He gave 90 minutes of his precious time just to consult, at no charge, with the mother of a young patient.
Dr. Barfield’s wonderful staff hosted a memorial at his office, and we saw other Joeys who had been in his care, beautiful kids with goofy smiles who make funny sounds in lieu of actual words. We poked around in his office, a place where so much hard news, and so much hope, had been dispensed. A few weeks earlier, at our last meeting with Dr. Barfield, he told us he was most concerned with Joey’s speech deficiency. Lying open on his desk the day of his memorial was a massive volume, Principles of Neurology. He had marked a section titled “Anatomy of the Language Functions.” It occurred to me that many of Dr. Barfield’s patients are probably incapable of remembering this good man.
Author Joseph Campbell wrote, “People must be willing to get rid of the life they’ve planned in order to live the life that is waiting for them.” As Joey’s condition revealed itself, we moved out of one demographic into another peer-group: special needs families. Surprisingly, there was no handbook, no So, Your Kid is Broken or Raising a Special Needs Child for Idiots in bookstores. We checked.
Turns out, the best resources are other parents and disabled people. From the moment your first challenged child arrives (and plenty of families have more than one), you become an advocate for the disabled. You enter a battleground you were only vaguely aware of, a place on the periphery of old perceptions, and you either put up or shut up. My wife and I have never chosen the latter option (not that I’ve asked her to, self-preservation being one of my more marketable skills). So we’ve entered the fray, gotten to know some heroes in the struggle over publicly funded support systems for people with developmental disabilities and their families. It really does take a community — of parents, advocates, organizations and individual therapists.
Earlier this year the community won a tough battle to keep monthly premiums from being implemented in the Deeming Waiver. Also known as the Katie Beckett Waiver, it allows families with chronically disabled children to receive Medicaid funds to pay for the stuff not covered by typical insurance. The Department of Community Health (DCH), facing budget cuts, proposed sliding scale premiums (ranging from $21 to $458 per month) based on the parents’ total income. Then the DCH gave families about a week to provide the most recent federal tax return information. Many families would have been paying premiums they couldn’t afford based on income that no longer existed, because having a severely challenged child at home often means one of the parents has to leave a job. Legislators were flooded with e-mails and phone calls, and funding was restored to DCH.
“The advocates did their job well,” says Mark Trail, director of the DCH’s Division of Medical Assistance. “There are no easy cuts left to make. You know, we’re now covering fewer pregnant women and fewer people in nursing homes. Nobody is arguing that those are good things. The state just doesn’t have the money.”
The Deeming Waiver struggle will likely surface again, along with other skirmishes along the Medicaid and public policy front. A declining number of physicians is accepting Medicaid because of slow payment due to low funds and bureaucratic red tape. Therapists are trying to cope with changes in the Medicaid billing code that will impact the way they deliver services and potentially decrease the amount of time a client receives. Joey and his fellow challenged children then are numbers and codes with funny faces.
Jane’s Journal, Part II: 6-20-2002 – If only I knew what was ahead. If I knew what you were going to be like then I could prepare. Everyone keeps saying you’re going to be fine. What is their definition of fine? I hate that word ‘fine.’ It’s vapid, insolent, crass. It implies social acceptance, politeness, lack of creativity. It is the thing people learn to say. It does not require thought, introspection and is seldom told in truth.
There’s a story that every special needs parent knows, written by Emily Perl Kingsley, about the experience of raising a disabled child. Here’s the short version: Having a baby is like planning an exciting vacation to Italy. You get on the plane, it lands and the stewardess says, “Welcome to Holland.” There’s been a change in flight plan. What gives? Almost everyone you know is going to Italy. You’re stuck in Holland, which is slower-paced and less flashy, but lovely nonetheless. The pain of missing out on Italy doesn’t go away because the loss of that dream is significant, but if you waste time mourning you’ll miss out on all the wonderful things Holland has to offer.
It’s a good story, but I sort of hate it. I’m Italian. Still, it’s a wise message. Families of special needs kids like ours follow a worn path, a handicap-accessible trail. It can be a needlessly lonely road if your focus strays from the windmills and tulips just ahead. We’ll deal with Joey’s housing problems, adult issues like shaving, and answer the question, “What the hell is he going to do when we’re dead?” at a later date. In the meantime, if you ask me, Joey’s fine.