Because strong school-family communication and cooperation are essential resources for kids coping with muscle diseases, it’s useful to understand some of the day-to-day challenges of neuromuscular disease.
Many adults with disabilities credit their success in life to their family’s insistence on treating them like other kids, with responsibilities and dreams just like everybody else’s.
Neuromuscular disease lays a heavy load on a family medically, emotionally, socially and financially. Parents often feel worried, overwhelmed and isolated, and siblings may feel overlooked and ignored. As the disease progresses, so does parent-child dependency. Family life can revolve around caring for all the child’s physical needs, right down to waking every few hours to turn him or her in bed.
Faced with a life-shortening disease, families may focus strongly on the “here and now.” They may have little patience with school systems that seem to emphasize discipline and long-term planning. Due to the unusual demands of living with neuromuscular disease, a parent may appear to teachers to be coddling the child, or to be overinvolved in his or her care.
Children may be blithely unaware of their neuromuscular disease, or they may express curiosity, anger, guilt, hurt, sadness or fear about the differences they see between themselves and other kids. They may get angry at “my stupid legs” when they fall. Research has shown that many children with serious chronic illnesses experience strong feelings of isolation, inadequacy and worthlessness.
At the same time, children’s natural resiliency allows them to bounce back from these negative emotions, especially if they feel accepted, supported and secure. Helping children verbalize their feelings, focus on their strengths and make friends with peers can enable them to incorporate a realistic awareness of their disabilities into their self-concepts.
Ironically, children who are less disabled by neuromuscular disease can have a tougher time with peers. Children who seem “OK” and don’t use wheelchairs, but whose conditions cause them to be clumsy and weak, often suffer taunts, jibes and accusations of being lazy or not trying hard.
Fatigue is a very real symptom of muscle disease, especially in the afternoons. Teachers should realize that fatigue can masquerade as disinterest or noncompliance. Rest periods and small snacks are ways to address this problem.
Just as their friends start gaining independence, adolescents with some muscle diseases start losing it. At this most self-conscious age, these teens now may require help with eating and toileting, or need to wear leg braces, or have to ride special buses. As muscle wasting progresses, simple activities become increasingly difficult.
Many teens have a “take me as I am” attitude about their disabilities and participate as fully as possible in school life, finding creative ways to thrive and grow.
But some children withdraw emotionally as they enter their teens, preferring the world of video games, TV and online games to outside society. Others may deny the disease process and struggle on, resisting a wheelchair and pretending nothing is wrong.
If a child show signs of depression, parents should be notified so that appropriate treatment can be sought.
Again, kids with less obvious impairments can take a big hit in middle and high school, enduring brutal bullying and teasing because they look, walk or talk “funny.” One young woman with Friedreich’s ataxia (FA)  (a condition that makes muscles progressively more uncoordinated and slurs speech) described herself as an “outcast” in high school, especially when her condition worsened during her junior and senior years, and she fought against using a wheelchair.
“I sometimes wonder if the kids in high school who called me names think of me now. I wonder if they remember how they tripped me, knocked my books out of my hands, slammed my locker shut while I was trying to open it, threw spit wads at me, and hit and bruised my legs,” she wrote at age 26. (From a Cocoon to a Butterfly in Six Years , MDA’s Quest magazine, July-August 2004)
Unless a bone has been broken, the transition from walking to wheelchair use takes place gradually, both physically and psychologically. Each child — and each neuromuscular disease — is unique. Some children never attain the ability to walk, and they use a wheelchair from early childhood. In other cases, the transition to a wheelchair may occur at any age.
When students get to the point of falling frequently, schools sometimes require them to use their wheelchairs at school in the name of safety, even though the student vigorously insists he or she wants to walk. There are advantages to walking for as long possible, provided it’s safe to do so. Walking promotes bone strength, circulation and more similarity to peers. Using a wheelchair fulltime at school may make it harder for students to maintain walking ability at home.
Many families let the child set the timetable for using a wheelchair, while making accommodations to minimize falling. At school, these can include providing help carrying books and lunch trays, allowing extra time to navigate the halls, appointing a designated runner during sports, and planning for classroom and playground safety.
Ironically, once children start to use a wheelchair fulltime, they often find they regain mobility, energy, freedom and confidence. To facilitate this transition, it’s vital that the school environment be wheelchair friendly and that teachers and school personnel accept the change positively.