Dear Friends and Colleagues,
I’ve never had a student in my class with a neuromuscular disease. So why, you may ask, am I writing an introductory letter to this informative booklet? Because, although none of my students uses a wheelchair, I happen to roll through the door of my third-grade classroom every day.
When I was 16 months old, doctors told my parents I had spinal muscular atrophy (SMA) , and since then I’ve been living a successful life with muscles that are slowly weakening throughout my body. These weak muscles prevent me from using a chalkboard, opening marker caps, or even tying the shoelaces of a clumsy first-grader tripping down the hallway.
Despite these obstacles, the students in my classroom learn an age-appropriate curriculum, and — perhaps more importantly — an invaluable lesson of compassion toward all of humanity.
If you’re reading this booklet, you probably have the unique opportunity to teach a child with a neuromuscular disease. Just like me, your student will have limitations. The challenges posed by these limitations will lead you to consult this guide, exercise your teacher’s intuition, and even ask the child directly what to do (thus inadvertently teaching the skill of self-advocacy). Regardless of how you solve issues that will come about, I ask that you have as much vision for your student as my teachers had for me.
I recently came across a pile of letters that my third-grade teacher had my classmates write me during one of the many hospital stays of my youth. They are a priceless compilation of overused crayons, misspelled words and sincere get-well wishes. They remind me that I was once a part of a little community that missed my presence, my positive influence and my example that we should always search for the abilities within our disabilities.
Your student with a neuromuscular disease will be all of these things to your classroom community, and you and the other children will be enriched for having known him or her.
As you and your students meet the challenges before you, keep in mind that MDA is always there to help with resources and support. You aren’t alone, and — if my life is any proof — your efforts aren’t in vain.
With best wishes and gratitude,
Klenk Elementary School Member
MDA’s National Task Force on Public Awareness
Ms. Wheelchair Texas, 2004