SMA and Recreation


The following paper was written for my PE class in high school. I e-mailed several families for information. If you are interested in more information on any part of my paper please, e-mail me! The little red numbers (1, 2, 3, etc.) mean that I have pictures of these activities. Unfortunately, I do not have permission to post these pictures publicly. If you would like to see a picture of the activity, please e-mail me with the number of the picture you would like to see, and I will contact the family for permission to share their child's picture.

Thanks for reading and enjoy!

Spinal Muscular Atrophy and Recreation

Spinal Muscular Atrophy, or SMA, is a neuromuscular disorder that affects all muscle groups, including breathing, eating, and all voluntary movement. Because movement is affected recreational activities can be difficult. Parents and caregivers of children with SMA have had to become inventive in order to allow their children the most involvement possible in recreation.

There are three types of SMA that develop in childhood. Type I, also known as Werdnig-Hoffmann disease, is the most severe type. Children with type I are often unable to be in an upright position for extended periods of time due to their breathing and swallowing difficulties. This, along with the extremely limited movement associated with type I SMA can make recreational activities difficult. Type II is less severe than type I but still doesn't allow for much conventional recreation. Children with type II tend to have more upper and lower body movement than a type I child but can still have major difficulties with recreation. Type III, also known as Kugelberg-Welander disease, is the least severe of childhood onset Spinal Muscular Atrophy. Type III children are often able to walk until their early teens. Their recreational activities are more intense and rigorous than the recreational activities done by children with type I and II but need more adaptations than would be required for conventional recreation. Each type of SMA has children with a broad spectrum of abilities. Each child and type has different recreational activities that are appropriate for the individual. There are, of course, recreational activities that can be enjoyed by children with all types of SMA along with children without physical restrictions, it's all about adaptations.

Children with SMA type I are extremely intellectual but due their limited movement, they can be restricted from doing many activities, unless their parents are creative. Fortunately most parents and caregivers for children are creatively endowed. Most children with type I enjoy watching television and movies but most parents insure that television does not become a "recreational activity" for their children. It is extremely important for children to be as physically active as possible so that they do not develop contractures. In most cases, physical activity is limited to small movements of the fingers, hands or feet. Luckily, a family in Georgia created "arm slings"1 to help their daughters. This family now provides arm slings to any family that would benefit from their use. With these slings children with extremely limited movement can do many physical activities that would be impossible without the support of the arm slings. Another popular activity is using a SmartNav Mouse2. "A tiny reflective dot is stuck to a moveable surface. The monitor-mounted transmitter/receiver sends infrared beams out, and senses reflections from the dot. The software 'maps' that motion to cursor motion." (Stants) The SmartNav allows children independent access to the computer for educational or recreational activities. Another activity that is enjoyable to children with type I or any child with a physical disability is playing "adapted" board games. According to Jennifer Perkins, mom to Hannah age 2, "We use a music sheet stand to hold the game boards in an upright position and use poster tacks to stick on the pawns/game pieces and Hannah draws the cards and lets us know how many spaces to move…"3 Board games are easily adapted for any age group and can be enjoyed by the entire family. Toys activated by a switch4 are also extremely popular with children with SMA type I. "A switch adapted battery operated toy is a toy that has been modified so that a child with a disability can press a switch and activate the toy. [Switch activated toys are for] any child who has difficulty accessing a standard battery operated toy's on/off button. For instance, a child may not be able to see the button, can not physically push the button, or developmentally does not understand the concept of cause and effect." (Grass) In the case of children with type I, it is the lack of muscle strength to activate the on/off switch. Most children when using a switch activated toy use a MicroLite Switch or a Bubble Switch. These are the most sensitive switches and are easily activated by a light touch. There are many other recreational activities that are enjoyable to children with SMA type I. Many children also enjoy swinging5, blowing or having bubbles blown6, swimming and going outside. In most cases, any activity can be adapted so that any child can experience the activity with relative ease and still enjoy it.

Children with SMA type II are able to participate in more physical activities than children with type I. Even so, recreational activities can be difficult for children with type II. A very popular activity with children with type II is swimming7. Many children use aqua therapy to help improve movement and combat contractures. Like most children, children with SMA type II like to do what their able bodied siblings do. Stacy Saville, mom to Morgan age 2, discovered that basketball was an enjoyable activity for Morgan but it was very tiring for her to continually lift little Morgan to the hoop. "Zeke [Morgan's twelve year old brother] remembered that he had a little net with suction cups on it (the kind you can stick on a window), and we put that on her stroller between her legs, and gave her the ball. She had a blast throwing the ball into the basket over and over again."8 Morgan is now able to play basketball with her brothers without her mother becoming tired. The Saville family has also adapted the game "Silly Golf" by Milton Bradley. The game was originally purchased for Morgan's older brother but he didn't enjoy it. "We were going to throw it out, but Clayton found it in the garage and started playing it. Of course, Morgan said, "My turn, my turn..." so I held her up and tried to putt, but that did not work very well. So I told Morgan "Let's just try throwing it into the hole spot." It is really cool, because there are these three little gophers that stand around the hole, and she likes to "whack" them down, and then throw the ball into the hole. Then the ball is shot back out of the hole, and she sits at this little table where the ball…always lands in a little holder." The Saville's have discovered that with a little bit of adaptation Morgan, can do anything that her brothers can. Another family, the Vander Wyk's, discovered that a "walking sling" has been very beneficial to their daughter, Holli. The sling allows her to glide through her room while experiencing the feeling of walking10. The Vander Wyk family also devised a similar system that is attached to a power wheelchair base. With this system Holli is able to take ballet class with her peers and "walk" with her friends11. This is a far more elaborate adaptation than "Silly Golf" but has been extremely beneficial to Holli. Whether the adaptation is simple or requires knowledge of electronics and welding, everything can be adapted to any child's skill level and strength.

Children with SMA type III are able to do the most physical activities. The problem with recreation for children with type III is that they tire easily. Swimming is a favorite for many children with type III. The Wilson family has discovered that swimming is an activity that can be enjoyed by the entire family. According to Mitch Wilson, father to Bryce age 4 and Alexis age 2 "Our biggest family activity recreation-wise is swimming. Both Bryce and Alexis started on survival swimming lessons from age 1 and are both quite capable swimmers. Soon after Bryce's official diagnosis with SMA, we joined a health club with an indoor pool and large outdoor lake with beach… My children have even inspired me to swim for exercise but my wife has always been a very good swimmer. Bryce can swim the length of the pool & back all on his own doing backstroke or his combination of freestyle/breaststroke occasionally and Alexis seems to be taking after her Mommy in the swimming category." Both Bryce and Alexis participate in all family activities. Bryce also participates in hippotherapy, horseback riding with a licensed therapist. "Hippotherapy is a form of therapy that literally means "treatment with the help of a horse." The primary goals are normalizing muscle tone, equilibrium reactions, head and trunk control, coordination and spatial orientation. The multidimensional swinging rhythm of the horse's walk is transferred to the patient's pelvis in a manner that duplicates the normal human gait. In hippotherapy the horse influences the rider rather than the rider controlling the horse. The movement of the horse is the treatment tool to achieve the goals of strength, balance and normalizing muscle tone." (Cerebral Palsy Resource Center) Hippotherapy is beneficial to children with type III to help maintain as much function as possible. T-ball is a recreational activity that is enjoyable for all children. T-ball, like any other activity, has to be adapted. But with help from peers or family it can be done. As with types I and II, children with type III can do anything with additional adaptations and support.

All the activities mentioned can be enjoyed by all children, not just children with SMA. Any child can experience any recreational activity. All recreational activities, even for able bodied children, need to be adapted for the child's specific strengths and weakness. Just because it may seem difficult, doesn't mean it can't be done. Disabled or not life is all about adapting.

Finished April 22, 2005 7:42 PM