The saying “play is the work of childhood” has been credited to everyone from Swiss developmental psychologist Jean Piaget to TV’s Mr. Rogers. The phrase is so well known because it’s absolutely true — even for children who have disabilities caused by neuromuscular diseases.
However, for our children, playing may be more difficult, especially with peers who don’t have disabilities. It’s tempting to protect our children from activities and social relationships, but that can keep them from developing into the wonderful people they were born to be.
Their play — your problem
Whether your child’s life expectancy is long or short, they need to learn how to be social and play with their peers, both able-bodied and disabled.
One reason that play is the “work” of childhood is because it helps children develop social skills. During play, they learn how to stick up for themselves and how much they can push others to do their will.
This is especially important for children who need to ask able-bodied peers for help with everyday tasks. When the novelty of helping wears off, it’s best if your child has made the helper a friend, not just an assistant.
As shown in "Age-Wise Play Stages," until about age 4, many kids aren’t very interested in interacting with others (except for the occasional filched toy).
Beginning about age 4, they’re aware of each other as individuals.
Mackenzie Matarozzo, 5, of Collbran, Colo., says other kids just accept her as she is at her preschool.
Her mom, Melonie, adds, “Kids at school don’t seem to separate her out. They don’t seem to realize there is anything different.”
To adults, the differences are obvious. Mackenzie walks slowly because of her limb-girdle muscular dystrophy, and her teacher holds her hand when they’re walking in the hall to prevent her from falling.
Preschool age kids may not perceive that different physical abilities are outside the norm, says psychologist Bob Murray, co-author of Raising an Optimistic Child (McGraw-Hill, 2005, with Alicia Fortinberry). Murray adds, “After 4 or 5, they tend to get their parents’ view of differences.”
The onset of social play (ages 4-7) brings a new set of challenges. Much of the time, your child will be playing with children without disabilities from school or the neighborhood, or joining in with a sibling and the sib’s friends.
Children in this age range tend to be very physically active. For children with neuromuscular diseases, some less physical play activities include:
From about age 8, children’s play lets them realistically explore their place in the world.
While there’s still a lot of physical play using bicycles, scooters, running, etc., there also are many less active ways for children to play together:
Medical transitions and play
As the physical abilities of children with progressive neuromuscular conditions decline, they may become less able to keep up with their peers physically. They’ll also require medical equipment and adjustments to their styles of play.
“Equipment means one thing to kids and another to parents,” says social worker Holly Bleasdale. In her work with the MDA clinic at the University of California at Davis Medical Center, she frequently counsels families dealing with Duchenne muscular dystrophy, especially as the children fall more and have more trouble keeping up.
“That first manual wheelchair is a hard time for parents. It means their child is getting worse,” she says.
”For the kids, it’s freedom. Other kids want to push them, and life is fun for them again.”
When my daughter, Katie, who had spinal muscular atrophy, needed a tracheostomy in elementary school, we talked about how to explain it to her classmates. We decided to say it was a lot like having pierced ears, but this was in her throat to help her breathe.
The classmates found it really cool because they could hold their hands a few inches from her trach and feel the air move!
Bleasdale admits that some children are self-conscious about new equipment and may be reluctant to play with their friends. However, their increased mobility and function soon outweigh the inconveniences and self-consciousness, she says.
For children who are anxious about the new wheelchair, braces or trach, Bleasdale suggests that parents help the child practice answering the kinds of questions other kids will ask. They can also have the child’s friends visit one at a time to ease the social transition and get the word around school about the new cool stuff.
Playing for life
Play gives your child the opportunity to grow psychologically and experiment with life choices.
Expose him or her to as many ways of playing as you can. The child who loves to play T-ball may become the sportswriter for the high school newspaper. The child who dresses dolls may be the costume designer for a local theater.
Play is a child’s work. Being able to play comfortably with friends both with and without disabilities helps a child learn to be comfortable in the larger world.
Also see "Kids @ Play: Louisiana Moms 'Fix It'," from this issue.
As children mature, they pass through several stages of play. Children with neuromuscular diseases also experience those stages, but not always at the same pace as peers without disabilities.
Psychologist Bob Murray says children with disabilities “may not benefit as naturally” from play as their able-bodied friends, because they can’t participate as easily. That means parents must ensure their children have many opportunities to play, and that the play is age-appropriate.
Murray describes the stages of play as:
Children play primarily with their principal caregivers.
Solo play begins. Toddlers play separately from their caregivers and don’t notice other children in the room.
Now they’re aware of other children, and they experience parallel play, sometimes called mirroring play. At times a child will take the other child’s toy in order to be able to accomplish the parallel play. That can be disruptive, and presents a good time to begin learning about social relationships.
Play becomes more cooperative and can include games created by the children. This social play stage reaches its peak about age 7. This is often called the age of “magical thinking” because kids haven’t yet related strongly with the real world.
Children now begin more reality-based play activities. Depending on cultural and family influences, children often create play based on gender issues or preparation for adult roles.