Symptom Management

Dealing With Special Equipment

One of the most difficult transitions we must make as parents of special needs children is to begin to use adaptive equipment which finally identifies our children as being “different.” For a while, we can get by with traditional car seats and strollers, but eventually, as our children grow, the traditional equipment no longer provides the support the children need.

Here again a parent's ingenuity can provide successful solutions. As an interim measure, one parent used a “twin” stroller with a front and back seat. By putting the back of the front seat down she made a “longer” stroller which worked very well for transporting her child. Graco makes a good twin stroller. It can be further adapted if need be.

Eventually, however, most children require special equipment. The first transitional piece of equipment is usually a wheelchair. No longer can a parent go to the mall “unnoticed.” This is a big, brave step, but if we are to function and be part of the world around us, it is one that many of us learn to take and somehow learn to cope with.
(See Positioning for Feeding section.)

“With our children, we must continually accept with reluctance.”

Wheelchairs, Ramps, Car Seats

Adaptive wheelchairs provide good head support and can be adjusted to the contour of the child's body, providing comfort as well as helping to slow the progression of orthopedic problems. Some of the smaller wheelchairs, such as the Mulholland Travel Chair®, convert to a car seat which is an added convenience. Other stroller-type wheelchairs that convert to car seats include: Snug Seat and Tumble Form Carrie Seat® and Carrie Rover® (the stroller part). A good car seat that has been recommended by parents is the Evenflo 7-year Car Seat.®

As the child gets heavier and more difficult to carry to and from the house, parents may want to consider installing a wheelchair ramp. Because of new accessibility laws, many carpenters are becoming familiar with building codes for adding access ramps to existing structures. Increasingly attractive and “less obvious” ramps are becoming more commonplace. While building a ramp can be an expensive project, funding assistance may be available from various sources.

Some Thoughts About Finding The Necessary Resources
To Help Meet The Growing Needs In Your Family:

Many of us find it very difficult to ask for help. But this is an extraordinary experience we are living through, with extraordinary demands placed on our time, energy and resources. Along the way, we will all be faced with the challenge of learning new skills; one of those challenges may be learning to ask for, or simply to accept, help.

There are organizations out there which are willing to help families with sick children. Indeed, some are specifically dedicated to that goal. When you are confronted by a special need, research the facilities and services available in your area. Check with the NTSAD office to see if their resource files can provide any leads. You may want to ask other parents for guidance as well; many of us have become, by necessity, expert detectives in seeking out valuable resources. And by all means, when friends and family want to help, let them. In the end, not only you will get some much needed assistance, but those who offer that helping hand will feel good about being useful.