Nick’s body does not have the same cooling system as the typical patient who shows up in a physician’s office or operating room. Most of us release a high percentage of our body heat through our arms and legs. With only a torso, Nick has far less skin surface, and as a result he can become dangerously overheated in a very brief period. Doctors and nurses have not always taken that into consideration.
This was a major concern when Nick was a baby and couldn’t speak for himself. Nurses typically swaddle infants to make them feel cozy and warm. Nick was not swaddle-friendly. He’d practically glow red from a high body temperature. Heat rash has always been a problem for him too.
Dushka had to remain vigilant when doctors or nurses treated Nick, constantly warning them that covering him with bedding, wrapping him in blankets, or putting him under hot lights could kill him. Nick’s self-roasting tendencies gave rise to a family joke: “When Nicky’s cold, the ducks must be freezing.”
PARENT ADVOCATES
They say there is healing power in laughter, and thank goodness for that because, as anyone with a disabled or special-needs child knows, medical issues are a serious concern as well as a major expense. Our children typically need advanced and specialized medical care, and they spend more time in hospitals, emergency rooms, and physical and psychological therapy clinics than most kids. In addition, they often need full- or part-time caregivers and expensive medical equipment such as custom wheelchairs, prosthetics, special beds, accessibility ramps, lifts, special baths and showers, and other items.
Psychologists say that access to affordable and competent medical care is critical in order for families with disabled children to attain some semblance of normalcy in their lives. Many families, including ours, have relocated at least once and sometimes more in search of the best doctors, hospitals, clinics, and treatment for their children.
Nick had continuing issues with high body temperatures, heat rashes, urinary infections, and respiratory issues as a child. Dushka felt the rainy and often changing weather of Melbourne might be a factor. When he was around ten years old, Dushka and I concluded that a warmer climate might be beneficial for him. That summer we took a four-week vacation and went to Brisbane, which is more than one thousand miles to the northeast and enjoys a more consistent subtropical climate.
We made this move even though we’d also been considering an even bigger move—to the balmy climate of California in the United States. We had family near Los Angeles who’d been urging us to try life there. We’d given it serious thought because we’d been told the United States was more advanced in its acceptance of disabled people. We thought medical care might be better there too. We had actually applied for my work visa in the United States a couple of years before we moved to Brisbane, but the process of getting it took so long we’d nearly given up. Then, shortly after we’d moved to Brisbane, the three-year permit came through. Dushka could not get her work permit due to the difference in nursing requirements.
We headed to the United States in 1992, but we quickly came to regret our decision. We loved California for its weather and beauty, but it was an expensive place to live on just one salary. We also discovered that the American health-care system, with its private insurance, was much more expensive and not nearly as generous as Australia’s socialized system.
It was perhaps unfair to move our children to California so soon after they’d adjusted to Brisbane. They found it more difficult to adapt to California and an entirely different country and school system. Just three months after moving to the United States, Dushka and I decided to return to Australia, partly because our American attorney had told us that we faced a lengthy process to obtain a permanent United States residency permit, and we feared it might never happen. So we moved back to our adopted homeland, where we were on more familiar terrain and found it easier to navigate the educational and medical systems.
HEALTH AND WELL-BEING
Dushka and I are grateful that Nick’s medical challenges have been limited mostly to dealing with his lack of limbs and a few other issues related to that. He proved to be an otherwise healthy and durable child. Australia’s health-care system is socialized to a large degree, and while we certainly had some medical bills over the years, they probably were not anywhere near what they might have been in the United States. We also benefitted from the assistance of several organizations that came to Nick’s aid as he was growing up.
We often tell other parents that they will need to stand up and serve as aggressive advocates for their children because no one cares as much about their kids as parents do. We were lucky to have a head start because of Dushka’s nursing experience, but we still had to educate ourselves and stand by Nick during all his medical procedures. There were a few times when well-meaning medical professionals could have caused serious harm to our son if Dushka had not been there to intervene and guide them.
Parents cannot afford to simply hand their children over to doctors and therapists and leave their treatment to the experts. We also recommend that parents with special-needs kids become well versed on all laws dealing with government health-care support and the rights of those with disabilities and special needs. It is critical that you know the right questions to ask of your child’s health-care providers, medical team, and therapists. You should educate yourself about the exact nature of your child’s disability and what treatments are most effective.
Because Nick’s disability is rare, we didn’t have many resources such as support groups, parent organizations, and online forums and websites to help us, but there are certainly many available for other parents whose kids have more common challenges. We also did not have access to the Internet and the world of information it provides.
We found it wise to keep detailed notes, medical records, and time lines of Nick’s treatments, prescription drugs, allergies, illnesses, medical procedures, and all other medical matters. You can’t rely on your physician to keep these records for you because records can be lost or destroyed.
Finally we recommend that parents work to form alliances and relationships with their medical caregivers because the more they know your child as an individual who is loved, the better they will treat him or her. There is an art to this, and it can be difficult to maintain good relations with all those who treat your child, but we’ve found that taking time to build personal bonds can enhance the quality of care your child receives.
Parents of disabled and special-needs children often have to make difficult decisions that affect their children’s health and quality of life. Many times we were torn when doctors recommended procedures that might benefit Nick’s long-term health while adversely impacting his ability to enjoy the active life that was part of his outgoing nature. Sometimes his doctors did not agree with our decisions. We learned to listen to all they had to say and then do what we believed was best for our son’s overall quality of life. In some cases, we also had to educate doctors and constantly remind them that some of their standard practices for “normal” patients were not safe for our son.
A HANDY FOOT
Dushka is normally a gentle, charming woman, but she sometimes had to become Nick’s Ninja Mom when those providing him with medical care failed to pay attention. This proved to be the case early on when his doctors endeavored to help Nick by operating on one of his greatest physical assets, his larger foot.
Unlike the smaller foot on his right side, Nick’s left foot has both a bone and muscle tissue that allows him to manipulate it. At birth it resembled a foot with two large toes fused together. Our hope was that if doctors could separate the toes, Nick might be able to manipulate them both, which would allow him to grasp things with his foot. We thought he might be able to then use the foot to hold a pen and write and do other tasks that are normally done with hands and fingers.
We had seen videos of a girl in England who had no arms but could use her feet to do many things for herself, including cooking dinner, writing, and painting. We were inspired by her ability to
adapt to using her feet. After consulting with orthopedic and plastic surgeons, we decided to let them operate on Nick’s foot when he was about four years old. We wanted to do anything we could to help our son be as self-sufficient as possible.
When Nick was being prepared for surgery, Dushka reminded the medical team repeatedly that his body temperature could elevate dangerously under bright lights and bed covers. She also mentioned that she’d heard of another child without limbs who had experienced this during an operation and was left with brain damage after suffering a seizure. Even though the doctors knew Dushka was a nurse, they did not pay adequate attention to what she told them.
While they were able to separate Nick’s toes during the operation, they nearly overbaked the rest of him. He came out of the operating room soaked with sweat and with a soaring body temperature. They frantically worked to cool him down with buckets of ice before he had a seizure. They also incurred Dushka’s wrath for failing to listen to her. From that point on, we always made sure Nick’s doctors and nurses had a full understanding of his tendency to self-cook.
GOOD FOOTING
As it turned out, the operation wasn’t as successful as we hoped it would be. While the surgeons did free up the two toes, they can’t be moved independently of each other, which would have made them more useful to Nick. Eventually, however, he was able to make very good use of the larger foot as it is. He can grasp a pen with it, although often he prefers just to hold the pen in his mouth and write with it that way. He does use the toes for typing and, amazingly, he can peck away at the rate of forty words a minute on his laptop.
As a child, Michelle nicknamed her brother’s foot “Nick’s little chicken leg” because she thought it resembled a drumstick. He often makes jokes about it, but his ability to manipulate that foot has become one of his biggest assets. He uses it to type, dial a phone, scroll on a tablet, guide a joystick on his wheelchair, and play video games—among other things.
While most people enjoy the convenience of smartphones and their many applications, for our son they are a great gift because they allow him to do so many things that would otherwise be difficult or impossible. This single device allows him to easily talk on the telephone, send e-mails and text messages, play music, watch videos and movies, play games, check his calendar, record sermons and memos, and keep up with the weather and world events.
Before smartphones, most of us could plan a trip by picking up a map, unfolding it, and reading it. Try doing that without any arms or hands! The first cell phones were much bigger, which made it easier for Nick to dial but posed other problems. People couldn’t hear him and he couldn’t hear them if he left the phone near his foot, so he had to figure out how to dial with his toe and then get the phone closer to his mouth and ears.
Nick’s solution was his own version of the flip phone. He practiced for hours dialing the cell phone and then quickly flipping it onto his shoulder. His goal was to catch it between his chin and his collarbone and then hold it there while he conversed. It took him many hours and no little pain. I kept imagining his doctor asking him if all the bruises on his face were from a beating and Nick responding, “Yes, I was attacked by my cell phone.” Then again, I’m sure his cell phones took a beating while he was learning to catch them. I don’t want to know how many were destroyed during his practice sessions.
THE HUMAN TORPEDO
Nick’s ability to manipulate his left foot and to put it to ingenious uses even as a toddler proved to be a blessing in many ways. Dushka and I were surprised and delighted when he was able to stand and walk by using the little foot for leverage, but we were also concerned about the toll it could take on his body over time.
The flesh on the bottom of his thighs wasn’t meant to be in constant contact with the floor, pavement, or rough surfaces. When Nick first began moving about on his own, we had to treat the skin down there with moisturizers and balm because it would crack and become tender. It did toughen up eventually, like the soles of our feet do, but we were worried about another potential side effect of Nick’s mobility.
Shortly after his birth, doctors told us that Nick had scoliosis, or curvature of the spine, that would likely grow worse as he aged. They advised that the less stress he put on his back, the better. Our son’s spinal problems are related to his lack of arms and legs. Normally our limbs help keep our spine straight and in place by distributing our weight evenly. Nick’s strong reliance on his left foot for leverage and balance made him tilt his body to that side most of the time, which put additional pressure on his spine and caused his rib cage to rotate slightly. This was further aggravated when he moved about with slight hops, which compacted his spine.
Some of the specialists we consulted suggested putting an iron rod in his back to support the spine, but the downside was that Nick would have very limited movement. Our son is not one to sit still very long, nor is he a couch potato. He has always been extremely active. Friends have dubbed him the “human torpedo” for the way he throws his body around, whether it’s diving into a pool or launching himself back and forth over the seats of an SUV as it cruises along the highway. My wife and I were aware by this time that medicine isn’t always an exact science. Doctors can make projections and predictions, but with something like scoliosis, there was no accurate way to predict how it would affect Nick in adulthood. We learned that surgeons were often eager to operate on Nick because they saw him as an interesting challenge. The thought of them opening up his back and placing a metal rod in it was disturbing, especially because Nick truly enjoyed being out and about and active with his family and friends.
Dushka and I told the doctors we did not want to constrain Nick. Our goal was to give him even greater mobility if possible, so when he was about two years old, we began searching for a wheelchair that our active son could control. In addition to the added mobility, we thought a wheelchair would elevate Nick so he could be at the same eye level as other children, and with seat belts and padding, it would also help support and hold steady his delicate spine.
We were eager to get him into a wheelchair as soon as possible to save wear and tear on his body. Of course, finding a wheelchair that suited Nick was an issue. Australia’s health-care system was quite generous in its benefits, but it provided only standard nonmotorized wheelchairs, which our son was not able to operate.
Nick was about two and a half years old when we learned of an electric wheelchair developed in England. This chair had a joystick control, like a video game, that made it possible for him to operate it with his larger foot. Aptly named the Comet, it was rounded like a barrel with wheels. It was not a thing of beauty, but Nick loved it because it gave him greater freedom to roam about without so much wear and tear on his body.
Dushka and I especially liked that the seat was designed to hold a child firmly in place. The custom chair was expensive, but a hospital in Melbourne with a special clinic for patients who lacked limbs offered to provide one to Nick.
RIDING THE LITTLE RED COMET
Strangely, when we told Nick’s medical team about it, they were not enthused. His physical therapist and doctors thought he was too young to operate it safely. Nick was adamant that he could do it, and by that time, we were much more inclined to side with our son. Finally the medical team came around and gave their okay.
The manufacturer sent the wheelchair along with a technician who taught Nick how to operate it. Everyone was astounded at how quickly he learned to zip around in it. Since it was rounded, low to the ground, and bright red in color, we nicknamed it the Little Red Comet, and Nick seemed to take that to heart. He was soon flying all over the neighborhood in it, once again exceeding all expectations.
The Little Red Comet was the first and most rudimentary in what has proven to be a long line of expensive custom-made wheelchairs for our son. I am not complaining, by the way. Power wheelchairs have enhanced Nick’s quality of life to an incredible degree. They’ve enabled him to travel and speak around the world. As the technology
has evolved, he’s found power wheelchairs that lower all the way to the ground so he can just hop aboard and then raise himself to be eye to eye with his friends and audiences.
In fact, one of the most joyous memories I have of Nick and Kanae’s wedding is when they rolled onto the dance floor with Kanae in her bridal gown riding on his wheelchair. Then they performed a beautiful dance together, moving to the music. It was a wonderful moment that left everyone teary eyed.
THE MATRIMONY MOBILE
Most people did not realize that the wheelchair was Nick’s “wedding special,” designed specifically for this milestone event. The designer completed it just in time for the wedding, which is a good thing because Nick’s previous model had been worn out and was hardly operational.
Nick specified to the builder that he wanted to be at a comfortable height for dancing with his bride at their wedding. The wedding special was like the Porsche of wheelchairs because it was also very fast and highly maneuverable. In fact, after the wedding Kanae told us that the wheelchair was so fast and maneuverable that Nick nearly sent her flying off the back when they came swooping into the wedding reception.
The wheelchair technology has evolved to an incredible degree, and so has the cost. Some of them actually use the same motors as those that run the windshield wiper blades on cars. Newer models come with their own apps for smartphones. Nearly all of Nick’s had to be custom made to accommodate for his lack of limbs and his scoliosis, not to mention his world travels and his daredevil driving style.
The only model that was not custom made for Nick was a wheelchair he had in elementary school. Called the YoYo, it was made in New Zealand and Australia. This was his second wheelchair. It too could be lowered so he could just hop in and then raise himself to the same height as his classmates. It was much lighter and smaller in size, which was better for transporting it in the van. In hindsight, I should have bought two or three of them because they were reasonably priced and suited Nick well, but the business shut down a few years later.
Raising the Perfectly Imperfect Child Page 8