Adapt to Your Child’s Changing Needs
When you think of adaptive equipment, you probably picture canes, walkers and wheelchairs. There are many other devices, both big and small, available to make life easier for anyone in need of an extra boost.
The products and strategies included here are by no means all of those available, but they give you some ideas for adjusting to the daily challenges of juvenile myositis (JM). Check with your child’s physician or therapist to find out what your child needs and what you can do to minimize the use of adaptive equipment. Using these devices unnecessarily can have a negative impact on your child, as he or she isn’t allowed to become naturally independent. There’s a fine line between pushing too hard and giving in too easily, and your child’s therapist will help you determine the right path.
Even when you decide your child does require some help, deciding what to use depends on your child’s specific disease stage, size, needs, and more. And many devices you use will only be temporary. Families have shared some devices and strategies that have helped them along their JM journeys:
Walking aids. Your own health is important, so be sure to think of yourself when considering if any walking aid would help. Walkers, canes and walking sticks help with balance and allow your child to remain fairly independent while maintaining as much strength as possible. One child decorated her cane with stickers to make it more entertaining and cheerful.
Strollers and wheelchairs. Depending on your child’s needs, renting a wheelchair is often sufficient. You can also find one that grows with your child. Special needs strollers are available for children who have outgrown standard strollers, and accessories like special pads and sunshades can help.
Everyday items. Parents and children have developed creative solutions to many of the obstacles JM brings:
- Eating can be a challenge when gripping objects is difficult. Pad cutlery handles or find cutlery of different shapes to help children have a better grasp.
- Non-slip mats and food bumpers keep foods from slipping around.
- A Sonic or electric toothbrush reduces the motion needed to brush their teeth.
- Loose clothing and clothes with elastic or Velcro fasteners ease dressing on their own.
- Long-handled reachers and brushes help maintain independence as children can get to objects and brush their hair on their own without reaching up as much.
- For school and crafts, easy-grip scissors and slant boards can help.
No matter what products or strategies you choose in the end, keep a few things in mind:
- Help your child understand why they need to rest or use certain aids.
- Focus on your child’s strengths when planning everyday activities.
- Encourage independence while monitoring your child’s frustration.
- Talk to other families who have experienced similar challenges.