Supporting families with special needs
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!
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.”
Ok - so I have several blind spots. By "blind spots" I mean things that I just don't get regardless of how clear they might be to others But lets face it. I'm not alone. As a profession, doctors have one big one and it revolves around understanding the emotions of parents who care for special needs children.
I have talked to multiple parents who feel as I do. Parents will tell you that all too often, the medical authorities are so busy staying on task and staying out of a lawsuit that they often forget who they are even talking to!
When a doctor suggested we see a specialist to check out some issues with our child , the doctor, whom I affectionately call "Dr. Death," gave us a shopping list of things that could possibly be wrong with our son. It buckled our knees. There we stood: overwhelmed and dazed - and all he could do was tell us we should undergo additional tests. It was cold and heartless. Hey Doc, did you know you just told me my perfect child had problems? Did you know that all the dreams I had for my child were just blown up? Did you understand that you sent my world spinning?
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.
Stop me if you’ve heard this one: “Person gets amazing results by doing (place the latest fad here)!” The Internet is an incredible tool, but it is also bringing back many of the crazy cures that came and went before the Internet. I know that if I mention any of them in this post I will get an email from someone who tried that specific drug or exercise regimen and swears by it, so I will stay away from naming names. Suffice it to say, I sympathize with the longing for a cure that many parents feel. That quest leads to thousands of advertisements, millions of dollars invested in new research, and many, many promises of medical miracles that confront us on a daily basis. One of the best expressions of this longing for a cure is the movie "Lorenzo’s Oil" from 1992. In the film, a couple’s young son has a rare disease that has no cure. It is so rare that no one is even working on it, so the dad sets out to figure it out and finds a solution. Man how I wish I could do that! It has always broken my heat to see my children struggle with everyday learning and childhood trials; how much more so when we discuss disability. I want healing; I want some potion that makes it all go away.
That ache has caused me to chase some shooting stars over the years. Early on we joined a group of parents who pooled their resources to pay for therapists from Hungary to come and work with our children for the summer. The program was getting amazing results with children in their home country. The problem was that the children in Hungary would come to live in the school and have this therapy every day until they were adults. How did we expect a one month program to accomplish what was taking a lifetime? I don’t want to make it out like it was a total loss. What was evident was that these therapists demanded way more from our children than we felt we could ever ask of them. We did learn some things, but it was not a cure.
