Limits
Mike Etzell

I’ve heard that it is a child’s job to explore and the parents’ job to set boundaries. Given that scenario, I sure could use some assistance from the Acme Fence Company when it comes to my youngest son, Lucas. Streets, sidewalks, yards and parks all have their natural boundaries, which Luke finds to be trivial at best. I can’t figure out if he chooses to ignore them or truly is not aware of the unwritten boundary rules that most of the world picks up on through life. It’s as if he was saying, “Hey, it’s a big world—might as well get as much out of it as possible!” Just picture me or my pregnant wife chasing after a smiling, running little fella hell-bent on getting to something a bit more interesting than what he just left. At three years old, Lucas is a well-traveled fella. And, now that he has discovered some speed, it would be a shame not to use it. Nothing like getting the most from your PT/OT therapy sessions…

Although danger looms often with Luke’s current approach to boundaries, I consider his mobility to be one of the joys in raising him. When we learned that Luke had a little more genetic material than most, an extra 21st chromosome, two distinct thoughts came to mind in relation to disability: mobility and anger. I know several people who have Down syndrome, but for some reason a gentleman in his 20’s sticks in my mind. He is neither mobile nor able to use the bathroom. As I held Luke in the intensive care unit I prayed that my son would be mobile. Looking back, my selfish desire was based on a feeling that physically my back couldn’t hack it due to a car accident some years ago. Silly me. The world of disability was familiar to me prior to Luke’s birth. In my formative teen years, my father and his family experienced three years of mystery while the Mayo Clinic in Minnesota did its best to figure out why he was losing his voice and motor control of limbs. Turns out he has a rare disease called PLS - kind of like ALS (Lou Gehrig’s disease), only you don’t die from it. I suspect this part of growing up led me to be involved with folks who experience disabilities in my adulthood.

Perhaps it was my familiarity with the perceptions and attitudes adults who are disabled face that was the root of the second thing that hit me while holding Luke in the ICU: anger. I was not angry I had a son with a disability. Heck, I knew disability was a given in the human experience (in fact, I’ve come to believe we are less human in the absence of disability). Rather, I was ticked off at the world. I have wanted the world to embrace and value people who experience disability and it just ain’t that way yet. Starting with my father’s disabilities 20+ years ago and my own work experience, I knew that often individuals look past folks with disabilities. Many do not see a person with feelings and emotions, dreams and aspirations but rather someone who struggles to speak or walk or fill in the blank. I would have to advocate full time for the rest of my life. It ticked me off that the world was this way. Still ticks me off. At this point I just work on changing attitudes and perceptions one person at a time. Only now it is from the additional perspective of being a dad.

Lucas has a brother, Ben, that is 19 months his senior, and a twin sister, Marisa, who is 30 seconds older. Being the youngest child Luke seems to have a desire to make up for lost time. He is up and at `em an hour and a half before his siblings. Morning person I am not, not that it makes any difference to this little ball of energy. My wife and I joke that the morning hours are when he is at his best. Hey, we have even mentioned to speech therapists that if they are interested, 6:00 A.M. would be the best time for an hour or more of their services. Sounds like a good idea to me.

Amidst the joking I have found deep inside me twinges of, “Am I doing enough?”, or “We should be doing more.” Interesting to me, given all my years around disability, I find the “what ifs…” creep into my life occasionally. What if I spent more time on flash cards and sign language with Luke? What if he never gains verbal language that others can decipher? What if little green men eat all the cheese on the moon? What if the Minnesota Twins don’t win the World Series? Hey, guess what? They did win. Twice!

Upon returning from the guilt trip, I find myself coming back to the belief that his siblings, parents, extended family and the community we are involved with are the true places where all valuable learning will come. We will work on communication and other challenges, but we won’t allow the litany of potential therapies to dictate and define his and our lives.

I believe I have experienced three of the easiest years of Luke’s life. The biggest issue for me at this point is gaining communication that people around him can understand. From my father’s experience I know that the ability to somehow communicate with others sure is helpful in life. Signing would certainly work and words would be great. I know Luke has benefited from his older brother and twin sister; there is no lack of talking in our house. In fact, sometimes it pains me to hear Marisa speaking so clearly and Luke not so clearly. Words are a bit scarce at this point. Luke is very good at “Hi” and naming siblings and “Mommy/Daddy,” but things get hard to decipher after a few favorites like “cookie” and “book.” Mind you, just because a fella has few words others understand doesn’t mean he can’t talk. Quite the opposite for us actually. Luke is often found with a book in his lap and “reading” to anyone or anything that is near by. He also has an amazing monologue that goes along with putting on hats and other dress-up clothes while parading inside our house. In fact, all three kids enjoy putting on a show like this for my wife and me a few nights a week. Times like this that I wonder about the future. I find myself day dreaming the good dreams… he is so expressive and alive…

In a Dr. Seuss book titled “On Beyond Zebra,” there is a boy who patiently waits while his friend teaches him the entire alphabet. Not one to stop at the natural boundaries, this boy introduces new and wild letters beyond Z that open up a whole new world and way of thinking to his teacher. After all, the boundaries of a world that only thinks from A to Z will never do for Luke or his siblings. Time to start thinking beyond Z. For with Luke, as with his creator, all things are possible.

Mike lives on Whidbey Island with his wife Kristi. Their 4th child was born in August. Mike enjoys all things outdoors and is looking forward to the time when his kids can carry their own packs versus carrying them in a pack. Mike also coordinates the Dad’s Night Out group located on Whidbey Island. To contact Mike for information about the Dad’s Night Out group, call (360) 678-0559.