As If High School Weren’t Tough Enough …

Even freshman orientation
is more complicated for
students with muscle dis-
eases — and their parents

by Sabrina Low-DuMond

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.

Author Sabrina Low-Dumond and husband Don are pictured with two of their children, Zack, who has Pompe disease, and Madison.

staffed with suited-up athletes ready to

Cheerfully clueless

answer our questions and hand out applications. We find our way out of Sports Alley seemingly unscathed.

Be a sport

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.

 

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

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