Supporting families with special needs
A dark storm cloud is hanging over our household. A spirit of fear and a sense of doom has gripped our family. I’m afraid even the mightiest forces of the deep can’t change what’s about to happen. I am defenseless against the march of time and the consequences of this reality.
My 16-year-old son wants to get his driver’s license.
He is our oldest, so this ordeal is new to us. I’m not sure I’m ready. Is anyone? It seems like we just carried him home from the hospital for the first time a year or so ago. How can this little boy be eligible and qualified to drive a deadly machine?
Most parents lament the transitions of their children to young adulthood. It’s an emotional season and experts will tell you that pangs of the heart are normal. It’s hard to let go. But we’ve accepted our son’s emerging maturity and wouldn’t want to hold him back for selfish reasons. Our struggle is not with age, but rather ability.
Our driver-in-waiting has Cerebral palsy. This means not only tackling the challenges of learning how to operate a motor vehicle, but also learning how to drive with special hand controls. Beyond the mechanics of it all, learning to drive while simultaneously managing a physical disability presents numerous additional challenges. Are his reflexes adequately developed? In the event of an emergency, is he able to quickly exit the vehicle? How about the burden of maintaining the car – can he change a tire, fill it with gas?
If your family is anything like ours, you’ve enjoyed a variety of inside jokes over the years.Most of those on the outside either wouldn’t understand or find the humor in our running gags, but we love ‘em, because they conjure up great memories of priceless family moments.
One such event happened at Disneyland in Anaheim, California a few years back. At the time, we were pretty clueless about the park’s rules concerning the use of wheelchairs.At one point, we approached a popular ride to find a long line whose wait time was being measured in days, not just hours.
In a matter of moments, we went from being excited about the coming fun to lamenting the guaranteed torture of standing with three children in the hot southern California sun.
But suddenly, almost without warning, our fortunes turned once again.
An employee spotted our crew along with Kyle’s wheelchair and approached to inform us that the handicap entrance was around on the other side.When we arrived at the designated spot, we discovered there was really no line at all – and in a matter of a few minutes, we were being ushered to our seats on the ride.
Realizing the gift we were just given, and with unprecedented exuberance, we spontaneously broke into song.We began to sing the lyrics of a number from the classic movie, Willy Wonka and The Chocolate Factory:
“I’ve never had a chance to shine.Never a happy song to sing. But suddenly half the world is mine.What an amazing thing…’Cause I’ve got a golden ticket.”
It was a fun moment, a time when, for a split second we felt like we had come to the only place on earth where having a son with a disability was to our advantage.It was a very small thing, but sometimes small gifts mean the most of all.
but probably not as most would see it. You see, I have a child with Cerebral Palsy. Not that having CP is a blessing, but I have been able to see my child as a blessing to others, and that wouldn't have happened if he wasn't disabled. He has been on national radio as well as several video projects where people wrote him to tell him how much of a blessing he was to them. How cool is that? I sometimes struggle with the fact that people I would consider "complete dorks" have perfectly healthy children. Why do they get a pass when I have to "go through the valley"? "They don't deserve healthy children", I say to myself. But then I'm a hard-headed male. I ask myself, "would I have a heart for children with special needs if I didn't have one myself?" "Would my child be as spiritual and intelligent if he had been born without CP?" Good questions! I believe things happen for a reason. The problem is we don't always get to see the reason. But the best part for me is that God has allowed me to see some of the reasons why. I feel blessed to see just a glimpse. That's why I feel so strongly about passing it on. Hopefully you feel blessed as well.
Ok, if you're a parent of a special needs child you've heard it. Maybe from an older lady at church; or maybe in the grocery store; "you must be special people for God to give you this child". Oh barf! All I want to do is scream (or maybe even kick that person in the shin). I am not special; I would gladly let someone else be special. I have no special gift that helps me cope with the fact that I have a special needs child. I am a parent, not unique, but in a unique situation. Some days I don't feel like I can make it. I fight with my wife, I yell at my children. When some tells me I am special it just reminds me of all the things I should be doing and I'm not. All the therapy things I should do or run my child to. All the things my other children don't get to do because I'm just plain tired. I guess that makes me a caring parent, not a special parent. So don't tell me I'm special. Just tell me to hang in there.
I don’t know why, but I have always had a drive to make a difference. Is this a need we all share? Do we all long not merely to exist but to truly change lives for the better? It happens all the time in movies: people rise up from the drudgery of their lives to change the world. Popular culture is dominated by the idea that each one of us wants to be the Chosen One, at the center of some great story. If we all have these feelings, why is it so few actually get the chance to fulfill their dreams? Or are there, in fact, more people who change the world than we realize?
When we think about making a difference, most of us look to celebrities who have the influence to mold popular culture. This influence can be born of wealth, talent, a compelling life story discovered at an opportune time, or even just sheer exposure through the movies, TV, music, and books we all let into our homes. Bill Gates, Bono from U2, Oprah, President Obama; these are the people who can organize large followings to rid the world of things like malaria, or feed entire countries. We look at them and think: “If I had the money or fame I would use it to do good just like them.” I like to think I would make good use of that kind of power and fortune, but so far no riches have come my way. Sometimes I get the frustrating and depressing sense that I’ve done very little with my life: I’m sure I’m not alone.
Such morose feelings can be a real trap; they can suck us into gloomy, self-pitying defeatism. I applaud those who can rally large groups for a good cause, but I realized something today that I had forgotten. Life’s greatest changes come one person at a time.
Fifteen years ago, we decided to start a Sunday school class for children with special needs: we called it Special Friends. We didn’t have any children lined up; we thought there was a need, so we set up a room and waited for kids to start coming. Well, no one showed up! It was probably a little silly to think that, without any fanfare or even an announcement of our class’s existence, people would simply come out of the woodwork. In those first weeks, I don’t even think we even put our name in the church bulletin.
