Even freshman orientation is more complicated for students with muscle diseases — and their parents
Imagine 800 middle school students arriving for freshman orientation at Trabuco Hills High School in Southern California.
All students are taking their first steps onto a campus four times the size of their current school, complete with swimming pool, tennis courts, a school store, vending machines and a gym with real wood flooring.
The school is adorned with adulations of “Distinguished School” and “Blue Ribbon” in larger-than-life signs. Rows of tables are set up for every sport and activity imaginable and high school students are handing out maps and selling chili, submarine sandwiches and home-baked goods to raise money for their respective sports teams. Each new and existing student is trying to look purposeful, yet bored.
It’s all quite intimidating for the incoming freshman class of 2013.
Be a sport
My husband, son and I are first directed toward the tables where every sport the school supports is trying to recruit new talent. Thirteen-year-old Zack, who has the metabolic muscle disorder called Pompe disease, reads each sport aloud as if he’s contemplating which one to sign up for.
I quicken my pace, hoping he’ll follow my lead so that we don’t spend too much time in this area that serves as a painful reminder of what he cannot do. His pace does not change; instead he looks at each table, all proudly arrayed with trophies and staffed with suited-up athletes ready to answer our questions and hand out applications. We find our way out of Sports Alley seemingly unscathed.
I guess the good news for us is that when Zack was younger, we didn’t have to invest thousands of dollars in equipment and lessons to find the one sport that would take him to the Olympics. Before Zack’s diagnosis in 2007, he knew his muscles were significantly weaker than other boys his age. He just didn’t know why. Having a diagnosis gave the disease a name, but he often still wonders why.
Our next stop is a short overview about Trabuco Hills High School. A very upbeat and confident student body president leads us in the Pledge of Allegiance. She then gives her words of wisdom on how to survive high school, which start with a strong recommendation of … you guessed it, getting involved in sports!
I nervously glance over at my son, who appears to be smiling and waving at a girl from his art class. I follow his line of sight to see her smiling and waving back. Who cares about sports?
We are then herded, by last name, to tables of counselors to have our questions answered about electives. Of the 15 electives available, eight of them are music related, which is not an option for Zack, given his weakened diaphragm muscles. This leaves keyboarding, animation, video production and computer-assisted drafting as his top four choices.
After a brief summary of how electives work, we power walk our way to the “D” table to find out what elective Zack can take, since he is exempt from physical education. A smiling and very informative counselor greets us when it’s our turn. We show her the middle school’s recommendation (which, by the way, is really not a recommendation as much as a mandate), and she happily explains that we don’t need to choose an elective since Zack’s course schedule is already complete. She takes her red Sharpie marker and puts a big red X across the electives we’ve chosen.
We explain that Zack is exempt from PE, given his 504 plan, and ask what he will do during that period. She says that he has to take an elective and looks down at her big red X over his list. Her mouth turns down at the corners, but a few seconds later she’s happily optimistic again and quickly scribbles an “OK” in the same red Sharpie, making life all better. She cheerfully looks up and asks if we have any other questions. We take our marked-up course schedule and leave the table.
Stairs and stares
It’s now free time to tour the campus. Our family walks through campus trying to understand the general lay of the land. My husband and I try to keep the mood light and upbeat, but I can tell that Zack is feeling anxious.
His first concern is having enough time between periods to get to his next class. I remind him that his 504 plan allows for extra “travel time” between classes. His next concern is having a bottom locker, given how hard it is for him to stand up from the floor. I assure him that an arrangement can be made for him and make a mental note to ask the head counselor.
He looks up and makes the observation that there are a lot of stairs. To me, it looks like a run-of-the-mill flight of stairs. To Zack, it looks like a long flight of stairs with no landing, wide enough to fit 10 students shoulder to shoulder, with no railing down the middle. Again, we assure him he will have elevator access and not to worry.
I’m saddened by these thoughts that fill Zack’s head and add to the already stressful situation of starting high school. Differently-abled kids have the challenge of dealing with all the firsts of high schools, plus the added challenge of doing it in a way that doesn’t bring attention to them — the challenge of making their special arrangements not obvious to anyone and, of course, the challenge of fitting into a “normal” world when their world is anything but normal.
Several kids say hello to Zack as we walk around campus and I can’t help but wonder if all these kids will remain his friends when ninth grade begins. Each year, he seems to shed a few “friends” as the kids get promoted into higher popularity social circles where all bets are off and it’s every man for himself.
Zack has had the same circle of friends for several years. They don’t know about the muscle disease he has. They know he’s weak, they know he wears a body brace under his clothes and they know he can’t play paint ball with them. This is how Zack wants it.
High school is tough. It’s awkward, stressful, confusing and intimidating. As parents of a special-needs child, we have worries well beyond those which can be fathomed by parents of able-bodied students.
This is not a complaint. We are blessed beyond measure to have Zack in our lives. This is merely a snapshot inside our life, for one single event. Not unlike the hundreds of other single events where Zack experiences the milestones, goals, rites of passage and life situations of a growing boy, but with the added hardships and mental weight of doing this while coping with an inherited muscle-wasting disease.
Yes, high school is tough enough.
Sabrina Low-DuMond, of Foothill Ranch, Calif., is a stay-at-home mom. She and her husband, Don, have three children: Kyle, 25; Zack, 13; and Madison, 12. Low-DuMond recently authored a children’s book about a rhinoceros beetle with weak muscles, called Weakling Willie (Publish America, May 2008).