Supporting families with special needs
I’ve been thinking of two lines lately that pretty much say the same thing.The first is an old proverb, originally of French origin and later quoted by the famous Irish playwright, George Bernard Shaw.“The more things change,” he wrote, “the more they remain the same.”The other comes from the once popular songwriters Simon and Garfunkel.In the classic song “The Boxer” you’ll find the paradoxical observation that “…after changes upon changes we are more or less the same.”
When you have two children navigating the complexities of sixth and eighth grades, respectively, your mind wanders back to your own time in Junior high school.I guess they call it “middle school” now, but when I was walking those halls, I spent a lot of my time trying to impress both my friends and the young ladies who caught my fancy.A lot has changed between now and then – but not when it comes to the pursuit of “trying to be cool.”
Kids still have phrases like “cool” or “hot” but they all use other jargon that I’m neither familiar with nor even really understand. These sayings seem to run in packs just like children who use them. I’ve had to tell my kids from time to time that their mom and I don’t think some of those “sayings” are appropriate.Call me a censor, but we’ve had to ban certain phrases from use.
Regrettably, I can remember back to that time in my own life when I used the word “retarded” as slang. Saying something was “retarded” was a way of appearing cool and fitting in with the popular crowd.The irony of it all was that refusing to expand my vocabulary past what was “cool” was anything but – and in retrospect, was downright foolish.
I have a twelve-year-old truck. I don’t drive it every day because it is a huge, diesel-guzzling monster with a 36-gallon gas tank; it hurts just to fill up. We use it for camping, getting animal feed, and, as anyone who’s owned a truck surely knows, to help friends and relatives move. It is long paid for, so I don’t want to replace it or get something else. When it breaks down like it did last month, however, it is so expensive to fix that it really can break the bank. The auto mechanic gave me a price, then called twice more to tell me the truck needed some more things fixed. By the time I got it back, it cost me way more than I had hoped or could afford. Well, this month it broke down again! This time I had it towed to our house. I thought maybe I could figure out what was wrong and fix it myself. As of right now, it’s too early to tell if I figured it out. I have a part, though, and as soon as it warms up a little I will put it in and see if I was right. I told my wife there was a 50/50 chance that I knew what was wrong, so I have a twinge of uncertainty about actually fixing it. Then again, the mechanic who was supposedly a professional had to “fix” my car three times to get it right. I know it’s just my truck, but we expect an expert to know what is going on. That applies not only to our cars but also to the doctors who are supposed to help us figure out what is going on with the ones we love.
A while ago, I was talking to a mom whose child had just been to the doctor. Her child had experienced what seemed like a significant medical issue, yet all the doctor could tell her was “I don’t know”. I really hate when a doctor says that! All those years of schooling, residency, and who-knows-how-long seeing patients, and all you can tell me is, “I don’t know”. When I go to the doctor I have some expectations of knowledge on his or her part, but am I expecting too much? This doctor studied human anatomy, diseases, and disorders, literally from head to toe. Probably he had to memorize more about my foot than I ever knew about my whole body. But how can this doctor whom I, or my kids, see infrequently actually know us? Yes, he might know what ails all men, but this doesn’t mean all his poking around is going to fix everything, or cause him to truly understand my child.
And so the planning begins.
How to spend the holidays is always a challenge. My family has a long list of traditions. We’ve always had the entire extended family gather for Christmas Eve. By “entire” I would say, between 25 to 30 relatives and friends piled together in one house.
We’re flexible with the site; it’s usually my Aunt and Uncle’s house with everybody downstairs playing pool or charades. It’s a scene. With all those folks in one place, it can get pretty hot and loud. At midnight, we eat tamales and black beans made from scratch by my mother and 94-year old Grandmother.
We then exchange gifts.
There are more twists to the traditions, but suffice it to say, I could write a novel about numerous other eccentricities in our clan.
Of course, my wife’s family has their own traditions. They get up early on Christmas morning, read the nativity story and then pass out the presents and cap things off with a lavish breakfast.
While it’s expanded since all the children have married, it still remains just the immediate family. Compared to my side, it’s a much quieter affair and since it starts so early in the day, it’s usually followed up by a “long winter’s”nap.
I don’t think that either family’s traditions are better than the other; it’s more a matter of familiarity and personal preference.
When my son was born twenty-two years ago, I remember walking into the neo-natal ICU and seeing that row of incubators full of babies. Most of them were there because they had been born premature like our son, and as we walked to the incubator that sustained our child I remember being amazed at how these tiny children were being so skillfully cared for. I was astounded by all the technology that was working to help these babies, including mine, survive. Last month, my family went to see our niece, who was also born prematurely, in the NICU. I noticed a far more sophisticated setting; the staff still displayed the care and skill needed to help the babies succeed, but the technology and procedures had clearly advanced since our experience.
I know I shouldn’t expect the technology we had all those years ago to still be in use, but the amazing speed at which new and better medical technology is evolving blows my mind. It isn’t just the medical tech; does anyone remember speech pads that cost thousands of dollars, now replaced by commercial, reasonably priced, off- the-shelf tablets? How about apps which serve as learning aids? There are so many of these available now that you have to scour review sites to find the best, and many are free or cost ninety-nine cents. I don’t think there has ever been a greater collection of tools available to help parents and their children succeed. Not only are current technologies a massive step forward, but many others are just arriving or coming soon, and will change the landscape for those with special needs forever. From Google’s self-driving car to exoskeleton technology, we are making ever-greater advancements, giving more and more people with special needs the ability to live a life that may never have been possible before.
We are living in exciting times. But I also see a disturbing trend as people talk about the value of the same lives so many others are working hard to improve.
Many are calling for the right to end a life they esteem less than optimal. This seems so counterintuitive; to spend millions of dollars and years of labor and research developing technology to better lives, and at the same time to lobby in order to allow these lives to be ended. Does that make sense? Doctors who are trained to save lives turn around and take lives, not even seeing this as problematic. This doesn’t really line up with the oath doctors take to do no harm does it? I can’t really get my mind around the two ends of the spectrum. Never has quality of life been better for everyone, yet many don’t see it that way.
