Supporting families with special needs
I have a little routine every morning. I get the kids up for school, make them breakfast, yell at them a couple of times to hurry up or they will be late. Once they get out the door, I look over the news. I do look at the big stories, but I am looking for something in particular. I look for news specific to disabilities or things that affect parents trying to raise their kids in this crazy culture.
Have you noticed that our leaders don’t seem to be on the same page right now? By on the same page, I mean with us and each other. Is the new healthcare law good or bad? I can’t tell if it will give insurance to everybody or create limits on how much healthcare we can get. Meanwhile, we’re dealing with giant deficits of numbers I can’t even fathom. I know this is a bunny trail but how can 600 million people owe 14 trillion dollars? Can anybody tell me where that all went?
How about public workers and their unions? Like them or hate them, I can’t tell if they are good for America or bad. I’d like to make 30% more than everybody else, or pay nothing for my insurance, but how come they can’t balance a budget without taking from those on the lowest end of the pay scale?
What about the rest of the world? Who put the hate blender on puree? If they aren’t mad at us they are mad at some other group in their own country, the government, the military, or other ethnic groups. Could the United Nations be any more useless? By the time they make a decision the uprising is over and some new oppressor is in power gearing up for his 30-year reign.
These stories leave me with a sense that our leaders and most of the adults in the world just aren’t getting it right. When it comes to disabilities, it seems the next generation can show us a thing two about understanding.
This month the disability community is a buzz over the new vice presidential nominee of the Republican Party, Sarah Palin. Mrs. Palin is the governor of Alaska, but—more to the point—her fifth child, Trig, has Down syndrome.
Will Mrs. Palin prove to be a champion for families of kids with special needs? Pundits on both sides of the aisle are already making the case as to whether she will help or hurt the cause of those with disabilities.
While I have my own political slant, I am not sure what role the vice president would have in passing laws for or against those with disabilities. Personally, I think it would be great to see Mrs. Palin as vice president, regardless of her congressional leveraging capabilities. To me, it would be a big plus to see a family dealing with a special need in the public eye. With Mrs. Palin as VP, the nation would have the tremendous learning opportunity of watching five-month-old Trig mature and grow.
At five months old, if your child is in good health, his care may be similar to any other infant. My son was easier than most. Because he had cerebral palsy, we could leave him in one spot and he wouldn’t move. Even as a toddler, he couldn’t get into much trouble. But, as he grew, he began to fall behind other children during playtime; it was tougher for him to explore the world than it was for other kids his age. Life became more difficult for him—and for us.
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.
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?
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.
