footsteps

I am on a walk. It’s very long and often lonely. Although I cry out to God for help throughout my journey, I still search for a blueprint, the footsteps of other special needs parents who have walked a similar path.

How do I advocate? Am I doing it right in this situation? Am I being too firm, too angry, too nice, too soft, too accommodating? How do I pick myself up, not to mention Micah, after disappointment, after struggle? How do we move on?

This is my son’s life I’m talking about. A life filled with interests and desires, entities that don’t get fulfilled unless I set the ball in motion, unless I see things through.

The weight is almost too much for me to bear sometimes.

Micah loves to perform onstage in front of an audience. Most people familiar with him know this. At last count, he’s been in almost fifteen plays; the last one was a summer community theater production. He had about 25 lines, learned songs and choreography as well.

Whenever he’s chosen for a role, we rehearse over and over until he says the words clearly, with perfect timing and excellent expression. And he is nothing less than wonderful when performance time comes. Family, friends, and strangers affirm him. This summer a young boy we didn’t know told him he was his favorite.

We floated on that high all the way until school started.

Then, audition time came for the fall musical. Enter a new director, new choreographer, a choir teacher with no knowledge of Micah. Initially, we were thrilled when a role was offered. But when the cast list came out, the type of role was vague. I asked for clarification. He will only be in the opening scene, the young director explained. He’d given Micah the smallest role possible assuming he had appointments and therapies he’d need to attend that would interfere with rehearsals. Really? Is that the reason? We hadn’t indicated this to him on the audition form; why did he just assume?

I don’t want to appear the angry, accusing, hovering special needs parent. I’ve witnessed this type in action, and I don’t believe it’s the best way to get results. What’s the old saying? You catch more flies with honey than you do with vinegar?

In the past, when I’ve stepped into advocate mode, I’ve often found it rather easy; feathers go unruffled. I just ask and it is done. Other times, I must go against my nature, and become a firmer version of myself, the version I knew I’d have to be with this director.

At the end of the first day’s rehearsal, I pulled him aside and reminded him of how many plays Micah had been in, of the hours and hours spent in previous rehearsals that gave my son an opportunity to hone his skills. I highlighted Micah’s successes, illuminating his capabilities and how he deserves more than the minimal (just to show that a special needs student is involved in some small way is not acceptable), that he is talented, that he can perform with excellence with the right coaching. I exposed his wrong thinking.

“There are no appointments or therapies that are more important than his involvement in an activity he is passionate about,” I said, my eyes never leaving his. “I had planned, as I’ve done before, to put them on hold, during play season.”

All the while, a voice in my head was beseeching this man not to push my son out of the way for ease of the show, a voice imploring him to give a little more, to go the extra distance. It really wouldn’t take much. My son can learn and do much more than you think!

Did my words make much difference to this director? His blank look didn’t promise anything.

But, in that moment, I envisioned a friend’s footsteps. I remembered many conversations I’ve had with her over the years, learning how she advocates for her son who has downs syndrome, not taking no for an answer, finding a way to bring joy to his life.

They all matter: hers, mine, and the footsteps of all those who strive to give their son or daughter their best life. And if we’re lucky enough to find them, they carry us forward, giving us courage, determination, and the ability to never give up in creating the lives our children deserve.