Patients and Families
By Jeri Licht
Having a child required that I learn about sports. Having a child with FOP did not change that, though it certainly changed a lot of other things.
For one, I do not rush to sign Daniel up for judo, karate, lacrosse or any other sport that's currently in vogue without first checking out the sport, the rules, the coaches, the kids, the location, the equipment, the risks to typical kids, the risks to our one-in-two million kid, and so on.
It is a well-supported fact that sports are important for all children, including those with FOP. It teaches teamwork, coordination, rule-following, accepting constructive criticism, good exercise regimen for long-term health, and sportsmanship, just to name a few (although the latter has yet to arrive in full force in Daniel).
Unfortunately, sports also include risks: Risks of failure, defeat, embarrassment, teasing, bullying, isolation and injury. It is only with respect to the latter that our kids with FOP differ from their typical peers.
Passion for the Game
Some sports are clearly riskier than others, and each situation needs to be evaluated on its own. My husband Peter and I decided to allow Daniel to play baseball, despite the risks, for several reasons. For one thing, Daniel wanted to play baseball very, very much. While that would not make us let him bungee jump, say he was just as passionate for that, the level of his desire still deserved to be an important part of our evaluation process.
The same can be said of 13-year-old Oliver Collins, whose mother Julie said that he loves tennis and "continues to play despite the FOP becoming very active the past year and restricting his upper body considerably. The look on his face when he got to play for one of the school teams was priceless, and even though we stood watching with fear and trepidation as very hard balls were hit by the players, we knew that there was no place he'd rather be."
A second reason we chose to risk a sport is that we believe it is vitally important for Daniel to stay in good general health if he is to fight off the colds and bronchitis that can result from his pulmonary constriction. He needs to keep the muscles he can move strongly in order to protect the parts that are weak and bony. This means he needs to run around whenever he can and wherever it is relatively safe enough to do so, panting, sweating and aerobicizing like his peers.
Daniel needed a competitive sport, not a thrill ride. That is his nature and that's what we were trying to satisfy. A different child might need a different sort of activity. When Nick Mahler was young, he clearly needed thrills. He rode horses, raced a three-wheeled ten-speed bike, played varsity golf and more. Some of these activities have cost him movement, but he doesn't regret a thing. He said there is no limit to what a kid with FOP can do.
It should be noted, however, that at that time, the direct connection between the injury and additional bone/stiffness was not known. It might not have changed his actions, but it may have made sitting on the sidelines a bit more difficult for his parents.
Accounting for Risks
A third and related point is that we have reduced the risks of this activity by being part of the pre-game action. As a result, we have made sure Daniel is not in this active risky environment without ensuring the preparations necessary to reduce the risks are at the absolute minimum.
We met and educated the coaches on his condition. We spoke to all the kids on his team in a friendly non-threatening age-appropriate way. They, in turn, we educated the other teams, many of whom already knew Daniel from school and synagogue. Everyone was aware they should try really hard not to hurt Daniel.
I must emphasize here that it takes a long while before I believe someone really "gets" FOP. Talking is not enough. You must be there for weeks to make sure no one ever stretches your child, expects full motion or forces the child beyond his or her physical comfort zone. I know that sounds cynical and paranoid to some, but it is the reality of FOP. In fact, I am thinking of having a t-shirt made that says, "Don't take it personally; I DON'T TRUST ANYONE!"
Of course, the ironic part is that sometimes that statement gets directed at Daniel, who is not very good at pacing himself or stopping an activity when strain and fatigue build. We needed to help him by telling him to start out at a one-quarter effort so that he could see how his body, joints and FOP liked it. Your child might be able to make those decisions for him or herself.
Finally, we signed up for baseball because we knew, from numerous conversations with adults with FOP, that they cherish every memory of typical childhood activities, even if it cost them movement. They do not regret one hop, skip or jump. These childhood activities build not only memories for later but self-esteem, confidence and respect from others now. Julie Collins says that three years ago they went on a family ski trip and "Ollie learned to ski thanks to the wonderful care of a great instructor. He wouldn't be able to do it now probably due to all the recent FOP activity, but he still talks about that trip and fond memories of beating Mum down the slope by miles... I guess you'd call it the considered risk approach and while it might not work for all FOP families it's always felt the right thing for us. I know Ollie gets a huge amount of respect from the boys and staff at his school because of his desire to give things a go and view the FOP as a challenge, and the tremendous support he receives from the school is a direct result of his ‘joi de vie' approach."
Once we decided to go with a sport, it was now up to us to find something reasonably safe for Daniel to do. Here is what we learned:
Both leagues promote fun over winning, achieving one's personal best over beating someone else, and full inclusion over only using the best players. One difference between these leagues, however, is that in the Miracle League the games are played on a rubberized field specially built to increase the safety of kids using wheelchairs and walkers - not to mention those with FOP. The downside of this is that Miracle Leagues only exist where such ball fields exist.
The Challenger League, on the other hand, exists wherever there is a Little League, as long as there are a minimum number of interested players and someone has stepped up to organize it. We discovered the Challenger League of New Rochelle just as Daniel was becoming desperate to play a game on the weekend like all of his friends.
He played with this remarkable group for several wonderful years, I should note, and we will always be grateful to the people who organized the league in our area and enabled everyone to have so much fun. Eventually, though, Daniel's age-appropriate growing need for winning and competition made the very laid back "everyone hits, no one is ever out" policy of Challenger no longer appropriate for him. Finding the regular Little League in our area intensely focused on winning, we were lucky enough to discover the option of joining a local Youth Baseball of New Rochelle group.
Most cities and town have such local leagues. With much preliminary education, patient and flexible coaches, compassionate kids and parents, a helmet with a face protector, and lots of lacrosse padding protecting his shoulders, back, chest and thighs, Daniel has successfully played "regular" ball for a couple of years now.
As you all will understand, we define "successful" as not getting hurt. Since other boys pitch to Daniel quite fast, and his vastly restricted arm movement makes his swing quite short, Daniel has yet to hit a ball during a game, but he keeps trying and gets closer all the time. The coach says that Daniel is everything a coach could want: He comes to the games ready to play, takes directions well, improves each year, and has spirit and enthusiasm to spare. The whole experience has made Daniel feel like a pro player. That other boys pitch real balls at him also means that his parents watch with gritted teeth and twisted hands, hoping that if he is hit, the pads will be enough to reduce the trauma to a below-flareup-causing level, whatever that is at the moment.
Personally, I rarely know the score, being too involved in hoping for a safe game. One day in practice, Daniel hit a line drive and the entire field erupted in cheers. The look on Daniel's face as he ran the bases more than made up for the weeks of stress.
Besides the Challenger and Miracle Leagues in baseball, I believe there are also inclusive divisions of soccer, such as the VIP Program at the American Youth Soccer Organization (AYSO), and other sports.
There is also the Special Olympics, but I believe most of their athletes are not medically fragile. They can exert themselves physically and pursue great physical strength and athletic prowess without injury or exacerbation of their underlying conditions. That is not the case for a child with FOP.
Nevertheless, there may be activities that are appropriate for your child, depending on the sport.
Sports are an important part of childhood, and while our children must give up some things because of FOP, they do not have to give up everything. The decision of what to allow and when is not easy, but it is part of our job as parents, as is clearing the path ahead of them.
Hopefully, one day, you will see your child's face glow from a personal victory just as we have. Relish it, then take a deep breath and wait for the next pitch.