by Julie Fleisch, Seattle, Washington

Last year my son, Colin, lost a tooth at school as the speech therapist was feeding him his lunch. She told him he should take it home and put it under his pillow for the tooth fairy. The conversation continued with the therapist asking Colin about the tooth fairy. "Does the tooth fairy come to your house?" Colin pointed to YES on his wheelchair tray. "Does the tooth fairy come to visit your sister?" YES. "Has the tooth fairy ever come to see you?" NO. When the speech therapist related this conversation to me, I felt so neglectful. I know my son so well yet I had assumed he didn't understand the whole tooth fairy concept. Colin has surprised me many times with his understanding and observations of his world; a world he has trouble interacting with.

His world is a little different than the one most children live in. Colin has cerebral palsy. He is unable to walk yet gets around on his knees, in his wheelchair, and on an adapted tricycle. He is also non-verbal and relies on an alphabet board -- both manual and programmed varieties -- to spell out messages. Through his spelling boards we are slowly unlocking some doors for him. He has so many limitations yet so many abilities, the conflict between the two being the biggest challenge for those who work with him. How do we deal with the limitations so that the abilities can be used?

When Colin was born nine years ago, my husband and I had no idea how complicated our life was to become. Our resources have been stretched and our plans altered drastically. We started adapting things and purchasing special equipment for him when he was very young. Because we fall in an economic bracket that does not allow us financial assistance for Colin, we have learned to be very creative. I carry an Allen wrench in my purse and can do almost anything with Velcro. There has been a long list of needs and a variety of ways we have tried to meet those needs. Our experiences have brought forth, for me, some major areas of concern for families who have children, like Colin, with high needs for assistive devices and technology. Where do families find the financial resources to meet their child's needs? Who do parents go to for help? And how do parents keep up with the ever-evolving technical knowledge so that they can make wise and appropriate decisions?

The funding issues are very challenging for schools and programs that work with special kids. They are even more difficult for families. This is one of the stresses that affect families that already have enough stress to deal with. The paperwork that accompanies insurance claims and the type of coverage most families can afford is part of the problem. The other part is finding the funding when insurance doesn't provide coverage. We have purchased many things for Colin and have constructed many more ourselves because we couldn't afford to purchase them. I sometimes envy the lower income families because they actually have better funding with the state and federal assistance than families who don't qualify financially. We built Colin his early chairs and standers and did a lot with loaned equipment from other facilities and families. When we wanted to buy him a computer and the adaptations to run it, we chose to get community assistance. A letter was written and mailed out to local organizations. We received the funding and made some nice connections in the community. We did, however, have to put Colin on display at fundraisers, a concept that I didn't care for. When we ordered Colin's big mobility system and communication device four years ago, our choice was made with funding being an important factor. Our insurance would cover the power chair but not the communication system. So we put them together for ordering purposes and used the communication system to drive the chair. We ended up not getting the mobility system Colin could operate easily by doing this but how else could we fund a very expensive communication system, and who covers the cost of the ramp needed to get the chair into our home or the van and lift to transport him?

Families need someone to go to for help in managing their funding concerns. A lot of time and energy is used up and compromises are sometimes made that are not in the best interest of the children. In their effort to find the right equipment, parents are often placed in a position of making decisions without knowing all the options. Relying on the equipment companies to provide information or using the expertise of a salesman only adds to their dilemma and confusion as they are obviously biased. Maintenance and repair of the equipment becomes a problem if a product is chosen that is not carried by the company that services the area in which the family lives. It is important for parents to find assistance from someone who can show them a variety of systems and can listen to their needs and concerns. I think a trial period on the equipment is a good idea. Some vendors will allow the family to try the equipment for a week or a month. This gives the families a chance to become familiar with the device and actually see if the child can learn to use it. Otherwise parents may spend thousands of dollars on equipment their child will never use.

The other issue is "how do we keep up?" Technology is moving ahead at such a rapid rate that it is overwhelming for non-professionals. Classes in computer technology that I took five years ago are not valid anymore as the devices I learned about are almost obsolete. For teachers and therapists without access to major hospitals or treatment centers specializing in children with disabilities, it is very hard to be knowledgeable about current technology. Families may find it very difficult to keep up without major expenditures of time, energy and money.

In a time when there is a lot of talk about case managers and family empowerment, these questions are important to ask. Is the concept of a technology advocate being addressed? This could be a person who has current knowledge of assistive technology and can help families to select systems by explaining all the options available. The advocate could also assist families in learning how to use the equipment and handle maintenance issues and routines for usage. Funding strategies could be explored by someone besides the parents, thus decreasing stress and protecting the family's privacy and self-esteem. Maybe families could avoid some of the pitfalls that come with high-tech answers to very emotion-filled problems.

The whole idea of technology for kids, little kids, is an exciting yet emotional subject. So many things can be accomplished with computers. This can give children the power of speech, the ability to produce written materials, to manipulate pages, to control their environment in many different ways and to compete with their peers. How exciting this is for the parents of children with otherwise little ability to be involved. I remember how exciting this whole area was for me four years ago, as we prepared for and finally ordered the "big system" for Colin. I thought this would be the answer to all of our frustrations and limitations. Finally, Colin could feel some independence and things could be more normal.

But technology is not the sole answer. Without it, Colin has little chance but with it the chance is only slightly better. The bottom line is that it takes a lot of commitment and follow-through on the part of parents, teachers, and everyone who works with a child. These assistive devices are only the beginning of a long road to independence, not the end. It takes a tremendous amount of work and coordinated effort to make it usable. Indeed, sometimes it seems like more work and hassle to use the technology than to use the more convenient manual boards and eye pointing strategies we were used to. These strategies are always available, do not need to be programmed, turned on, or have their batteries charged. It reminds me of an afternoon, recently, that we spent at a children's center nearby doing trials and assessment on communication systems with Colin. The therapists there had set out and programmed three different devices for us to try. They put them in front of Colin who was excited with all three and they worked and played for several hours. When, at last, they were finished and had removed the array of keyboards and monitors, exposing Colin's own manual alphabet on the wheelchair tray, Colin began to spell in earnest. The experts sat and watched intently as he very clearly and urgently spelled out P-O-T-T-Y. The message had not been programmed into any of the fancy systems that had been covering his tray. We need to work on both manual systems that offer convenience and tech systems that offer advancement and independence. Technology can't do the job alone.

I have, thus, learned not to put all my eggs in one basket, so to speak. We need to work on many fronts if we are to get the success we want for our children. Technology is just one of those fronts. We need to spend as much time teaching our children to have self-esteem, to have appropriate social skills, to be survivors, to care about others, to be able to communicate basic wants on their own in case the system breaks downs, to be able to protect themselves and to be happy with their lives. We also need to teach the rest of the world to be accepting and tolerant. We need to prepare a place for our children to live as adults.

We taught Colin to make choices and the choice he made four years ago was not to use the "big system" we had chosen for him. In all our excitement to purchase the technology for him we had forgotten to look at how he wanted to operate such a system. We purchased him a head pointing system and he wanted to touch with his hands. He would just put his head down and tune us out. I still believe this was a good device for Colin's body. He had less tone in his whole body, less drooling, and the capacity for more speed in his responses. There must have been something about it that he couldn't deal with. All the assessments, videotaping, and discussions had dealt with the right components but not with the whole child. What about his need to directly visualize choice making and his growing need to manipulate things with his hands? I have learned that we need to look at factors other than the obvious, testable, measurable ones. Maybe we need to include our children, even the children who do not seem to have the ability to understand the process, in our decision-making and to respect whatever input they can give us.

Another factor that makes technology especially difficult for young children is our inability to predict the future. I look at my son's growth and maturation as being more of an evolution. His disabilities mask so much. As we slowly work our way through the things that limit what he can do, we discover more and more about what he is able to do. I am amazed, as well, at how many unpredictable factors are in his life. Just changing his medications or even the dosages, alters not only his body but, more subtly, his personality and his cognitive performance. How can we choose a very expensive piece of sophisticated equipment with the hope that it will last him ten years? I have no idea what Colin will be like in ten years or even next year. We can't wait to offer him the advantages of technology though. We have to deal with now and sort of bank on the future.

But I have confidence that he'll do everything we expect him to do and probably more. Every chance Colin has to do things on his own he takes. He taught himself to read and to tell time. Last week, he indicated on his alphabet broad that he wanted to watch SCOOBY DOO on TV. We should know better than to question his memory but we looked in the TV directory to see if it was on. Sure enough, it was just starting. So, to let him know he was right, we showed him the directory. Now he wants to look at the directory every day to see what’s on. We have done all we can think of to give him a sense of control in his life. Giving him the power to communicate his wants has been wonderful, but communicating at a higher level has been even better. The day he said SORRY after he had screamed uncontrollably about something, or the first MOMMY and I LOVE YOU are treasures for us. What a wonderful thing; to be able to express thoughts and feelings. He even tells jokes and laughs. Thank goodness we could unlock some of those doors for him. Last night, after several helpings of dinner, Colin looked up and grinned. M-M-M-DELICIOUS MR PIG ALL DONE. I'm afraid not, Mr. Colin you're not all done by a long way!

Reprinted with permission by:
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285 (Voice/TTY)

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