• Do your best to maintain good relationships with your child’s doctors, nurses, office and hospital staff, therapists, and caregivers while letting them know you will advocate strongly for the best treatment for your child.
Before Nick’s birth, Dushka and I had planned on having more than one child. Afterward we weren’t so sure it was a good idea. We consulted with doctors, who assured us it was extremely unlikely we would have another child with similar physical disabilities.
Still, we wondered if the genetic mutation thought to cause Nick’s lack of limbs was related to something in the environment that could affect any other children we might have. Dushka even fretted that Nick’s birth defects might somehow be related to the x-rays she’d been exposed to while working in hospitals. We were bothered by the fact that we had no solid, undeniable cause for our first child’s disability.
Dushka and I had many discussions on whether we should have more children and run the risk. There are those who say having children is a selfish act done out of ego. We don’t believe that. We believe it is an expression of love. The Bible says children are a blessing from God. Nick has certainly been that, but at the time we were concerned about our ability to care for another child with disabilities while also giving Nick all he needed for a good life.
This was a difficult decision and one I’m sure many parents have to make if they already are caring for a special-needs child. It’s also a very personal matter affected by a wide array of circumstances, so I can’t offer general advice to other parents. Dushka and I made the decision to try to have another child based on our doctors’ assurances.
We also took into consideration that Nick had proven to be much less of a burden than we had originally feared. He had already made it quite clear to us that he was an active, intelligent, and determined little fellow. Nick didn’t need constant supervision. That’s not the case with more seriously disabled or special-needs kids who have to be monitored around the clock. Dushka and I might have made a different decision if our son required substantially more care because of mental disabilities or more crippling physical disabilities. We were grateful Nick was able to do so much on his own even without limbs. One of our considerations in deciding to have at least one more child was the fact that we thought Nick would benefit from having siblings who accepted him and loved him unconditionally.
Okay, I’ll admit there was another factor. Dushka wanted to have a daughter along with our son. Once again, our plans didn’t quite work out exactly as we’d hoped in that one regard. Nick was not quite two years old when Dushka became pregnant again. Everyone was happy for us. If any friends or family members had concerns, they didn’t share them.
We did ask our doctor to check and recheck the sonograms very thoroughly during this pregnancy. He said this child was another boy, but his limbs were visible and appeared to be normal. We were just fine with another boy. We thought another son would give Nick a sturdy playmate if all went well, and we could always try for a girl later.
BROTHERLY LOVE
Even with our doctors’ assurances, we still were relieved when our second son, Aaron, was born without disabilities. We couldn’t help but do a quick check on this baby to make sure all limbs and fingers and toes were present and accounted for. With this child, Dushka had a much less stressful birthing experience, and there was a great deal of celebrating.
We named our second son after the Bible’s Aaron, who served as a source of support for his brother, Moses, although in their case, Aaron was the older of the two brothers. The Bible tells us that Moses and Aaron stood side by side against the Pharaoh throughout all the plagues and the march out of Egypt. We liked that thought, and it has proven true of our two sons, who have supported each other through good times and bad. The Bible also describes Aaron as the designated spokesperson for Moses. You may recall in the previous chapter, I noted that it was Aaron who came to me with the warning that Nick was contemplating suicide before his twenty-first birthday. We had named him well, apparently.
Scripture offers accounts of the brothers having many adventures together, and that would be true of Nick and Aaron as well. Aaron quickly grew bigger than Nick, and we had to keep an eye on him because he liked to try to pick up his older brother and move him around. Nick wasn’t thrilled with that, and he’d make his displeasure known by biting Aaron or pinching him with his chin or his left foot when they were little. The little brother learned to stay out of range.
I had to admire Nick’s agility even at a young age. Whenever Aaron would try to snatch one of his toys away, Nick was quite adept at using his body to block him out, like a soccer player protecting the ball from an opponent. Most of the time, they got along fine.
There is a different dynamic, obviously, when a disabled child is not the eldest in the family. I’ve heard other parents say that their older kids had trouble adjusting to a younger sibling with disabilities because the family’s life was so dramatically altered.
We didn’t have that problem because our two younger kids grew up with Nick always there. They naturally accepted him as he was, and they really didn’t have any questions about why he was different from them until they reached school age. Aaron and, later, Michelle thought nothing of stepping in to help Nick if they saw he needed something. They were simply following what they’d seen Dushka and me do for him.
Mealtimes were interesting when they were little because everyone sort of chipped in to make sure Nick had what he needed. The other kids thought nothing of cutting up his food, putting straws in his drinks, and even feeding him with a spoon or fork. No one was required or designated to feed or assist Nick at family meals. We just jumped in when he needed something. This was such a natural thing for us that when the kids would have friends over, they’d join in too, thinking nothing of feeding Nick as they all chatted and teased each other.
WRONG ROLES
Problems can arise if the disabled child dominates siblings, becomes overly reliant on them, or demands that they serve his needs, treating them like caregivers or servants rather than respecting their roles as brothers and sisters. We were careful to make sure Nick didn’t dominate Aaron’s time when they were young. He was good about not doing that as they grew older, but early on we had to set some ground rules because Nick sometimes became a bit bossy.
When a young sibling is forced to take on responsibilities for a disabled child that should belong to the mother or father, there is a chance it can diminish the quality of the sibling’s childhood experiences. Psychologists call this parentification, and they say it can stunt the emotional growth of siblings.
Dushka and I learned to be vigilant on this and several other fronts when it came to the relationship between Nick and Aaron and our third child, Michelle, our beautiful daughter who was born with no disabilities two and a half years after Aaron. Dushka was delighted to have another female in the house, and of course I was too. Michelle proved to be an equal match for her brothers and, in fact, they both doted on her. The relationships between siblings are said to be among the most complicated, impassioned, and enduring of any we form. When one of them is a special-needs child, the others can be affected in both positive and negative ways. Dushka and I were well aware of that, and we were also aware that we could have an impact on which way it went for our kids.
We’d heard of siblings who grew up with resentment or who felt burdened or embarrassed by a disabled child in the family. In some cases, siblings of disabled kids have felt guilty because they were normal or healthy and were spared any disabilities. Other siblings may feel they have to be perfect superachievers who never do any wrong, excel in everything they do, and thus do not place any additional stress on their parents.
We certainly did not want any of those negative feelings or pressures to affect our children and their relationships with each other. To help them form positive, lasting, and loving bonds, we did our best to provide Aaron and Michelle with a full understanding of Nick’s disabilities, their origins, and
what he could and could not do for himself. We also tried to give our other two kids equal time and attention so they did not feel neglected or less important to us than Nick.
The Bible’s Jacob blundered badly when he showed favoritism to his youngest son, Joseph, and provided him with that special coat of many colors. Parents can easily fall into the trap of favoring and spoiling the youngest child, sometimes because the other kids have worn them out and they have no will or energy left.
Children first learn the values of fairness, equality, and justice from their parents, and we did our best to be good role models for them. We also taught them that in the Bible the apostle James admonished Christians not to be partial in their treatment of others and not to dislike or look down upon the poor or underprivileged.
SETTING BOUNDARIES
There was another side to the issue of fairness. We didn’t want Nick to take unfair advantage of his siblings’ giving nature. There is sometimes a tendency among the parents of disabled children to spoil them rather than discipline them. I understand the reason. A child born with disabilities comes into the world with a greater burden than most.
Parents may feel a child with a disability deserves a break or more leniency. That philosophy may spring from good intentions, but it will likely result in problems down the road. This approach could make the life of the disabled child more difficult. Every child needs boundaries.
A disabled child who grows up without boundaries may lack discipline, social skills, or emotional intelligence as an adult. Men and women with disabilities can live independent lives, but often they rely on the kindness of others to ease their burdens. No one wants to help a selfish, demanding, controlling, or self-centered person—disabled or not.
There are positive methods for disciplining children that include helping them understand what is inappropriate behavior and giving them guidance on what is appropriate as an alternative: “Biting your brother if he takes your toy is not okay. If he won’t give it to you, come to me or find something else to play with. Do you understand?”
The discipline and punishment should fit the crime, and it should be consistent so that your child learns right and wrong as well as respect for others. If the bad behavior intensifies, parents will likely need to make the punishment more severe by removing the child from others, taking away privileges, and canceling favorite activities until proper behavior returns.
Nick has always had a strong personality, which includes a strong will and tons of determination, so as a child he needed plenty of guidance. He had to learn the limits and abide by rules. Like most kids, he preferred playing video games and skateboarding to doing his homework or household chores. We had very tightly enforced schedules for homework and housework as well as for playtime.
FINDING BALANCE
Our guiding rule was the Golden Rule, cited by Jesus: “Do to others what you would have them do to you” and “Love your neighbor as yourself.” Nick was not a mean child in any way, but he sometimes expected others to do what he wanted them to do, whether or not it was what they wanted to do. If we noticed that Nick was demanding too much of Aaron or bossing him around, we intervened. As the boys grew together, we had to remind Nick from time to time that Aaron was not his servant and that if he needed help, he should ask for it politely and graciously. I regard this as a learning experience for both the boys.
Older brothers and sisters often try to rule over their younger siblings. The unique aspect with a disabled sibling is that Aaron might have felt more compelled to follow Nick’s commands—or guilty for not complying—because there were some things Nick could not do for himself. We didn’t want Nick to abuse that or to dominate his little brother’s time. The broader lesson we provided Nick was that he should not feel entitled to the assistance of others. Instead, he should be humble and grateful to those who step up and help him, whether it’s his siblings, teachers’ aides, classmates, friends, or professional caregivers.
We expected Aaron to love his brother and to be helpful to him, but we assured our second son that he didn’t have to do everything Nick demanded of him. It was a delicate balance to establish. We also feared that Nick would become too dependent on Aaron to do things for him. This played out when Aaron was in his early teens and had a friend stay overnight. They got up in the morning after Dushka and I had left to run errands, so big brother Nick cheerfully took charge.
“Good morning, mates! Would you like me to make you some breakfast?” he said to Aaron and his guest.
“Sure, Nick,” they replied.
“Okay, Aaron. Get the eggs. Get the pan. Break the eggs in the pan, then turn on the stove…”
No one expected Nick to cook breakfast, of course, but we all enjoyed the fact that he offered to do it for Aaron and his friend and then without any qualms put Aaron to the task—and his brother stepped up without objection!
This is often the dynamic of disabled children and their siblings, and as long as it’s a mutually beneficial, loving, and accepted relationship, there is no problem. As they grew older, Aaron made a stand for his independence, which we expected and actually welcomed. We wanted him to have his own identity beyond being Nick’s brother.
The same is true of our daughter, Michelle, now a registered nurse who also has a degree in music production. Nick gave her rides on his wheelchair in their younger days. When our three kids played together, they adapted to Nick’s disabilities quite naturally. There were just a few minor gripes that he had an unfair advantage when playing hide-and-seek because he could fit into places no one else could—including dresser drawers and laundry baskets.
BROTHER-BOARDING
Michelle spent more time playing with her female cousins and schoolmates than with her rough-and-tumble brothers. Still, she could hold her own when they were together. She was a bit of a tomboy and didn’t let anyone push her around. In fact, she sometimes kept her older brother underfoot—and underwater at the same time.
Nick and Aaron would play in the surf all day long. Nick lay on a boogie board and Aaron towed him through the surf, sometimes whipping him about until Nick went flying into the water. It wasn’t until recently that we learned one of Michelle’s favorite childhood water sports was “Nick-surfing.”
Nick has always loved swimming because he has more mobility in the water than on land. Our other kids wore inflatable floaties on their arms to keep them buoyant. Nick couldn’t do that, but he was like one big floatie himself. Without the weight of arms and legs, he can float and paddle around for hours simply by keeping a little bit of air in his lungs.
Nick’s book Unstoppable reflects his fierce determination in the title, but he’s also rather unsinkable because there is always some measure of air in our lungs. This is where Michelle’s Nick-surfing originated. One of Nick’s boyhood games was to see how long he could hold his breath underwater (believe me, we monitored this closely after he told us of his suicide attempt). Nick had a bit of a problem staying down for the count in the swimming pool, however, because he’d keep popping up to the surface. His solution was to swim to the bottom of the shallow section and have his delighted little sister stand on his back during his countdown.
Michelle tried to stay on board her brother until he kicked his left foot to indicate he wanted to surface. I’m assuming Nick made sure to treat his little sister very well so that she didn’t one day decide to surf him beyond his lung capacity.
Nick apparently still enjoys this little game, because not too long ago his wife, Kanae, posted a photo of her standing atop Nick as he rested at the bottom of their pool. They say the best marriages are built on trust, and a man would certainly have to trust his wife to allow her to do that!
THE REEL NICK
Fishing off the coast of Australia or in its lakes and rivers was one of our most enjoyable family pastimes when the kids were growing up, in part because everyone could participate. It didn’t matter to the fish on the other end of the line. Nick became the most avid fisherman in the family.
We bought him a battery-operated reel so he could retrieve his line simply by pushing a button with his left foot. He could throw out the line and set the hook by holding the pole between his chin and shoulder and swinging his body to send it flying.
If Nick hooked something big, we strapped him into a chair, or Michelle and Aaron held on to him as we helped him bring the fish in. Most of the time Nick didn’t need our help. He was a very eager fisherman but not always so patient in his younger days. He tended to yank on the line to set the hook before the fish was ready.
If he was fishing from land and hooked something, Nick’s usual tactic was to hold on to the pole and hop backward until he brought the fish to shore. On one occasion, he didn’t have enough room to do that when he hooked a big fish in the river. They were having quite a battle. The fish was too big to reel in with the automatic reel, so Nick decided to bring in the line by spinning like a top, winding it around himself. He landed the fish, but it took us nearly an hour to untangle Nick and the fishing line. We told Nick he made a better fisherman than a reel.
We taught our children to be generous with each other and never to take each other for granted. They seemed to take our lessons to heart, but that’s not to say they were little angels or that they didn’t ever bicker. Our kids had the normal sibling clashes, and they had to be reminded from time to time that Dushka and I were running the show.
The other kids were known to play the “Nick card” now and then. Michelle and Aaron staged a minor rebellion when we declared they had to earn their weekly allowances by working around the house. They noted that Nick had not been required to earn his allowance by doing housework. Michelle showed her dramatic side when she pushed this point by announcing, “I wish I’d been born without arms or legs so I wouldn’t have to do any cleaning!”
Raising the Perfectly Imperfect Child Page 10