Supporting families with special needs
When our oldest son was born two months premature, my wife and I received a crash course in medical technology.
Seventeen years later, I remember it vividly. Kyle was sequestered for a month in the ICU, a 4 pound 5 ounce boy nestled in the middle of a mass of monitors, wires and tubes. At times, it was an overwhelming situation, but how grateful we were for the miracle of modern technology that kept our son out of danger and, quite literally, alive.
There was wonder and amazement at every turn. How did they know how to measure oxygen with a little light sensor on his finger? Kyle couldn’t speak, but the doctors knew what he needed and how to help him get it. What a tremendous job they did not only helping him to survive – but thrive, too.
Kyle [and his parents] was the beneficiaries of years and years of medical research. In 1900, it wasn’t unusual for some U.S. cities to lose 30% of their newborn infants in the first year of life. Had our son been born years earlier, he likely wouldn’t have made it.
Clearly, the medical profession has made unfathomable strides in just the past few years, let alone in my own lifetime. They seem to be regularly discovering things that once were deemed impossible. Quite literally, many once blind can now see and many once deaf can now hear.
We live in an age of miracles.
Yet, despite these amazing strides, it’s important to be on the alert for groups or companies who regularly use the system to further their own agenda.
I was reading the other day that more than 60 percent of clinical studies are funded by the pharmaceutical and biotech industries. In other words, many of the results we read about are framed and written by marketers who have a chip in the game. If the results of a study are unfavorable, companies often delay – sometimes forever – the release of the information.
Dr. Drummond Rennie is deputy editor of The Journal of the American Medical Association. He recently expressed frustration with this very thing. "This is all about bypassing science,” he said. “Medicine is becoming a sort of Cloud Cuckoo Land, where doctors don't know what papers they can trust in the journals, and the public doesn't know what to believe."
Something unusual happened to my wife and me this past Sunday.I’d like to tell you about it.
A complete stranger recognized our son from a video series he had participated in several years ago.
They offered a very kind review of his performance.
In fact, they were probably overly effusive with praise.But they then quickly turned the spotlight on us.
“You guys are doing a great job!” they told my wife and me.
Now, I know the best way to receive a complement is to simply accept it, but the whole thing left me with mixed emotions.
In reality, even though they commented on our parenting, they’re really just letting us know they think our son has an amazing ability to speak in spite of his challenges associated with Cerebral Palsy.
But instead of just accepting the accolade, I found myself squirming uncomfortably.
Why?
It’s probably because I don’t always feel I deserve it and that I’m not doing nearly the job everybody thinks I am.
Secretly – quietly – maybe I’m afraid that we’ll be exposed as delinquent parents.
I thought back to the circumstances surrounding the video shoot.
We agreed to let him partake in the film.
My wife accompanied him to the studio and when they returned, I asked my wife how he had done. Sheepishly, she said she hadn’t been really paying attention.
She was talking to a friend – something that I probably would have done, too, if I had been the one driving that day.
So, when friends started telling us how well he did, we asked for a copy just so we could see what our son had said.
As a father, I am extremely proud of my boy.
He is articulate and forthright.
He is a dynamite communicator!
In many ways, he is wise well beyond his years.
But if I’m honest, I’ll admit that I’m always quite concerned about how he might perform in those settings for one specific reason.
Foolishly, I’m afraid a poor performance will reflect negatively on my parenting.
Ironically, if he does too well, I begin to feel like a phony – that his brilliance really has very little to do with me!
Everybody remembers their first real job.
As for me, I landed mine fresh out of high school. It was a big deal. Real work and real money, a fair and livable wage for a fair day’s worth of work. I loved it! The company was family owned and all in all, it was a delightful place to set down roots and find my way. We all got along and everybody did well. But after ten years, circumstances changed and I felt lead to move on.
I recall the transition period from one career to another as being a bit tough. I bounced around from one job to another until settling down again with a great organization. Eleven years passed quickly and when circumstances changed again, another opportunity surfaced and we were again on the move.
Does this pattern sound familiar?
I’m a fairly spontaneous person and never planned at staying at any particular job for a very long period of time. But life gets busy and routines grow familiar and comfortable. There have been times when the thought of enduring the inconvenience of a change stopped me from tackling a new challenge.
In essence, I wasn’t willing to trade short-term pain for likely long-term gain.
My approach to work reminds me of an old sign spotted along an unpaved country road.
“Choose Your Rut Carefully,” it read, “You’ll be in it for the next ten miles.”
My entire life I’ve been amazed by the incredible country we live in - The United States of America. I am a lifelong supporter of our government and feel blessed to enjoy the freedoms that have been fought for and won by brave men and women. I have had an opportunity to travel across this country and witness the unique majesty of each state that I’ve visited. As a Colorado resident however, I might be biased. I live in what could be the most stunning state in the union! Today I’m looking out at the snow-capped ridge of Pikes Peak mountain, thrust up into a pure blue sky, and my breath is literally taken away. God certainly broke out the big brushes when he created this land.
While a miracle in its own right, the beauty and diversity of our landscape isn’t what impresses me most. It’s people that make up the true identity of any country. We in the United States are one of the most diverse and eclectic mixes of any group on earth. People are attracted here from every corner of the globe seeking the freedoms we’re privileged to enjoy and the ideals upon which this country was founded. Everyone brings with them their own history and culture, contributing in part to what the world has come to know as “American.”
At no time of the year is this rich cultural diversity more evident than at Christmas. As one journeys from state-to-state and visits different communities you’ll see many different ways that we, as Americans, celebrate this important holiday. One of the most intriguing and delectable parts of different Christmas traditions are the foods that take center stage at family celebrations.
In New England many families serve Lumberjack Pie, a mashed potato crust, filled with meat, onions, and cinnamon. Yum. Areas of North Carolina feature Moravian Love-Feast Buns, a faintly sweet bread of flour and mashed potatoes. Can’t you just smell them?
Other regions favor completely different flavors. Louisiana loves its Creole Gumbo. Many southern states plate-up Hominy Grits Soufflé. In New Mexico, Empanadas are all the rage. These small beef pies are filled with applesauce, pine nuts and raisins and are both savory and sweet - a little present for the mouth!
When I was a freshman in high school, a group of guys went around torturing us under-classmen. I did all I could to avoid them, but they did catch up with me and shove me into a locker. I was really upset and a little embarrassed by the whole event. None of their victims told anybody in authority, so nothing was ever done about these guys.
In this day of “no bullying zones” and no tolerance, I am troubled that bullying is alive and well.
I have come across many stories this month on bullying and even on the murder of the disabled. Most of the stories tell the facts, but one made me stop and think. If we haven’t been able to stop bullying in the 25 years since I was in high school, how will we ever make a difference?
The story, which appeared in The Telegraph [Macon, Ga.], is particularly disturbing in that a group of boys bullied a special needs student and then had the audacity to put a video they made of the incident on YouTube.
Yes, this was a horrid event, but the reactions of all who were involved are what really got me thinking. When confronted, the parents of the bullies had mixed reactions. Reportedly, some of them glared at the victim’s family, as though they were the ones who had done something wrong. (One parent she says did apologize.)
My15-year-old son is a sophomore in high school. And with his disability, he’s at a disadvantage when it comes to “fitting in.” At times he has said things that make me worry about how far he would go in his desire to be accepted. Similarly, the bullied boy mentioned earlier may have had an over-admiration of boys who are “cool” or popular.
