FAMILY LIFE
PART 1

Family Fun

Family activities may need to be modified somewhat when one child has muscular dystrophy. However, having fun and doing things together as a family is not only very possible, it's essential. Don't assume you "can't" go somewhere or participate in something because of your child's disability; your other kids may develop a great resentment of him if they think he's preventing them from having fun. Another red flag should come up if you're always too tired or busy to enjoy your kids or have any fun with them.

These problems have many solutions. See "Enjoyment and Fulfillment" for ideas about toys and recreation geared to kids with disabilities.

An adapted van can accommodate one or more passengers with wheelchairs and other equipment.

You can learn to see new choices and ways for your family to enjoy things together. Be creative and encourage your children to help think of ways your son with muscular dystrophy can participate in fun activities. More and more places are designed to be accessible to people who use wheelchairs.

The fun and relaxing times, the spontaneous laughter and enjoyment, the moments of closeness, are the things you'll enjoy remembering in the future. Making sure your family has plenty of fun and enjoyment of each other will assure good, loving memories for all of you, and will help lighten your load in the present.

Dr. Charlotte E. Thompson, author of Raising a Handicapped Child, writes, "If there is one prescription for doing the best you can as a parent of a child who is dying or who has serious disabilities, this is it: Make each day count.

"I know this is not an easy prescription to fill when you are overtired and burdened with emotional strain, financial problems, work, frequent medical visits, and endless responsibilities. That's why an occasional day of forgetting your routine can be the best medicine. A little fun can make a big difference in the quality of your lives. Take your child out of school for a day and visit a park or the zoo. Take some time now and then just to enjoy being alive."

There's lots of fun to be had at home -- watching videos, making popcorn, reading together, playing games, etc. When you do go out, you'll usually want to keep family excursions simple. Complicated schedules that keep family members waiting can lead to impatience, bad moods and squabbles.

Perhaps a spontaneous trip to a movie or a pizza restaurant isn't practical. But you can plan to go to a movie and then stop for ice cream next Saturday as a family. Just don't plan a lot of other things for Saturday so there'll be plenty of time to get ready, make the trip and enjoy yourselves.

Travel

Longer vacations involving travel or camping are by no means out of the question for families of a child with DMD. Careful planning is the key to success.

Recreational and tourist sites are increasingly becoming accessible to people with disabilities. Special wheelchair tires let kids enjoy the beach.

For example, if you call a hotel chain and request a wheelchair-accessible room, don't assume the person taking the reservation knows what that means. Call the hotel itself and speak to a manager. Ask about each feature that concerns you: door width, bathroom door width, steps from the parking lot to the room, shower chairs, etc. Be prepared to explain your requirements in detail to someone who may never have dealt with these questions. When you make a reservation, get the room number and written confirmation spelling out the room's features.

Take the same approach when inquiring about airlines, tourist sites, local transportation and other needs. Consider buying or renting a wheelchair-accessible van.

Occasionally there are delightful surprises. One family found that a famous amusement park had special waiting lines for people with wheelchairs that were much shorter than the regular lines, allowing the whole family to enjoy many more rides. Some beach areas have boardwalks or rubber mats for wheelchair users.

The more families travel and seek these services, the more commonplace they're becoming. Some tourist sites may even welcome your suggestions, if they've never thought about accessibility.

Each child should have some choice about what to do on vacation; maybe each child could choose one or two activities for a day. If a large museum or amusement park isn't totally accessible, your kids will probably enjoy doing what they can. Some families agree that if an attraction isn't accessible to the child with muscular dystrophy, they'll skip it and perhaps express their disappointment to the management. If this isn't feasible, or if younger children don't understand, two adults could take different kids to different activities.

One mother warns that families shouldn't try to pack too many things into one day of vacation. You'll be more successful allowing lots of time for each activity so there won't be a rush to get ready. Your child's energy level and adjustment to a new environment should be taken into account.

Of course, bring extra medications and other necessities with you. You may want to get the names of neuromuscular disease specialist physicians in each location you're visiting, and bring information on your son's medical condition, in case of emergency.

One family in Virginia has made a career out of traveling with their son, who has DMD. Since he was a young boy, they've traveled the country, written guidebooks and given seminars to hotels about accessibility. In his mid-20s, the son said, "Travel has kept my life from being boring. I never felt it was too much trouble."

See Resources for guidebooks and other information about successful travel and recreation. Your local community center, church groups, city department of recreation, college or university, YMCAs or YWCAs may also organize recreational activities that might be suitable for your child.

Next... Family Life, Part 2