No matter what your child’s disability, he or she can still help around the house
In the movie “Finding Nemo,” a father clown fish, Marlin, and his son, Nemo, embark on an adventure that proves something to both of them. Nemo is able to compensate for his disability (an underdeveloped fin) and accomplish much more than his father ever imagined possible.
Marlin must overcome his overprotectiveness and allow Nemo to learn and to discover his environment, in spite of the risks that arise every day.
After we watched “Finding Nemo” together, my 11-year old son, Adam, who has spinal muscular atrophy (SMA) type 2, declared that I was Marlin. Guilty as charged! I get overprotective and try to do too much for him.
One area in which the parents of children with neuromuscular diseases tend to underestimate their children’s abilities is household chores: We think our kids will take too long to get the job done, or the tasks are too hard. Or we feel sorry for our children and do everything for them.
|Adam Sullivan, 11, helps with several chores at his Carol Stream, Ill., home. Here he helps out by dusting the TV (above) and carrying groceries (below).|
I’ve frequently found myself turning down my son’s requests to let him help for these reasons. He’d beg to help while I felt like a martyr because I had too much work to do.
So, taking a lesson from Nemo’s and Marlin’s experience, I figured out ways that Adam could help maintain our home and take on his share of family responsibilities.
One of the first chores I assigned to Adam was bringing groceries into the house. When we return from the supermarket, he goes to the back of the van, and my husband, David, and I place grocery bags on the back of Adam’s power chair. We carry the heavier items or the bags that have fragile items in them.
Adam zips up the ramp and takes his load to the kitchen table to be unloaded. This saves us multiple trips to the van. He’s helping, and not using any energy that he may need later to get through the day.
He performs other chores as well, and they’ve become very important to him.
Helping me feed our cockatiels is one of Adam’s chores. His willingness to help convinced me to allow him to get his own bird. He’s also expected to dust his computer equipment and the family television. He knows that if he doesn’t take care of these things, he can’t have the privilege of owning or using them.
The chores that we as parents assign to our children serve many purposes. They relieve us of a small part of our responsibilities. They help our children to strengthen or maintain their muscles.
Diane Colley-Shanahan, a pediatric physical therapist for the Cooperative Association for Special Education (CASE) who works in several schools in the Chicago area, says, “The whole point of chores is to develop self-esteem by being a meaningful contributor to the family.”
She also cautions parents to be alert to their children’s fatigue level. She suggests breaking up chores into small chunks if fatigue is an issue.
Most importantly, completing chores gives a sense of empowerment and success to children who frequently feel as if they can’t keep up with their peers. And chores teach children that responsibility is a part of life.
Alexandria Dzimitowicz of Palos Heights, Ill., an 11-year-old with SMA2, says it’s important to do chores “so that I can do things everyone else can do.”
Sheila Jackson of Imperial Beach, Calif., whose daughter Miranda, 9, has myotonic muscular dystrophy (MMD), explains that doing chores “earns self-esteem while earning an allowance.”
She believes that “chores teach self-esteem, while an allowance gives the child a measurement of the value of the chores. Chores around the house establish the ‘I can’ attitude.”
Not all families feel, however, that chores should be rewarded with an allowance.
Chores don’t necessarily have to be traditional, like doing laundry and washing dishes. Depending on the severity of a child’s disability, those tasks might be impossible. See “Appropriate Chores” for some guidelines.
|Adam putting away silverware (above) and his laundry (below).|
Denise Hainline of Nashville, Tenn., suggests taking a creative approach to finding chores and adjusting them to children’s abilities.
Hainline’s sons, David, 19, and Daniel, 14, both of whom have Duchenne muscular dystrophy (DMD), help her by checking weather conditions or forecasts before they go somewhere. They also keep her aware of the time so she stays on schedule, and do other things that can free her for more physically difficult tasks that are beyond their abilities.
The boys used to take laundry to their room and put it away in closets adapted to their reaching abilities, but since their abilities to reach have diminished Hainline has eliminated this chore.
Reading to younger siblings while Mom or Dad prepares supper is a great example of an immensely helpful chore. Children with severe disabilities can also be responsible for checking on the family pet’s food and water, and walking the dog.
Jackson provides a stool for Miranda to sit on while washing dishes. A long-handled sponge also makes it easier for Miranda to do the dishes.
Alexandria Dzimitowicz’s parents, John and Jackie, have tied a rope on the door of the closet where the trash is kept. Alexandria attaches the rope to her power chair and opens the door. She can then throw away her own trash.
She also uses her chair to help her sweep the floor with a lightweight dust mop. These are great examples of ways to modify simple household chores.
The first step in assigning chores or responsibilities is to find ones that fit with your child’s strengths. Next, model the correct way to do the chore. Then show your children how to accomplish the chore on their own.
Supervise the children a few times until they’re successful. Remind them how often you expect the chore to be done.
Be sure to let your children know what a great job they’re doing. Finally, enjoy the fact that your children are one step closer to a feeling of independence.
Chore charts provide a visible reminder of the chores you expect to be done. Charts need not be complicated — a simple piece of paper listing your expectations is all that’s necessary. For younger children, a chore chart can be made with pictures of each chore cut from a magazine.
If you want to involve your children in making a chore chart, take their photos while they’re doing each chore. Use the pictures to make a very personal chart for each child in the family. Post the chart on the refrigerator or in another convenient location. This should save you from having to remind your children repeatedly to do their chores.
Whatever your personal Nemo’s disabilities, your child has strengths that you can use to select chores for him or her to do. Get your children started on the road to independence by letting them accomplish chores at home.
Try not to underestimate their abilities. Let them try new chores, even if you think they can’t do them. You may discover your children have abilities you never imagined possible.
|Mild Disability||Moderate Disability||Severe Disability|
|Walks but tires easily, mild weakness||Limited ability to stand, primarily relies on wheelchair to go from place to place, moderate weakness||Non-weight bearing, uses power wheelchair, profound weakness|
|Rinse dishes before putting in dishwasher||Set table for meals||Dust television set or low tables with lightweight feather duster|
|Make bed||Clear table after meals||Carry bags of groceries on lap or power chair|
|Tidy bedroom||Assist with folding of laundry||Alert parents when pet’s food and water dishes need to be refilled|
|Dress self||Put clothes in dresser||Place clothing in top drawer of dresser|
|Put on braces and shoes||Feed pets||Fold underwear or matching socks|
|Wash table after meals||Assist with tidying bedroom||Place napkins and silverware on table for meal|
|Move laundry from washing machine to dryer (older children)||Walk dog or let dog outside||Sort silverware (be careful to remove sharp knives for younger children)|
|Read to younger siblings or help them with homework|