TECHNOLOGY: A PARENT'S PERSPECTIVE
by Julie Fleisch, Seattle, Washington
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
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
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!
with permission by:
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013