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SOESD / Learning Matters / Newsletter Archive / March 2008 / What Assistive Technology Means to Our Family

What Assistive Technology Means to Our Family

Mary Ellen Cole, Parent

Our son is ten years old and lives with Cerebral Palsy that affects his legs and arms.  He uses a power wheelchair.  He attends Walker Elementary School in Ashland, Oregon.

To answer the above question it’s easiest to compartmentalize some of the areas of our lives.  Within each category, there are the devices and the people. In our experience, there is no silver bullet for any single device on its own.  The greatest impact that we have received has come from the considerable commitment and time of the many individual people who work with us.

Computers:  Put simply—it is his pen and paper. More specifically—his envelopes, his thank-you notes, the research and product for his presentations for school assignments, it’s his address book, phone book, math, and grammar work.  At school the computer allows access to the curriculum as well as his output device to successfully complete the schoolwork required of any student.  The computer, with accessible software and curriculum adaptations, more than any other item on these lists, requires the most continuous attention from a specialist and 1:1 assistant who understand the unique needs that our son’s physical disability has on his education. 

A specialist is required to evaluate, design, implement, and monitor the appropriate adaptive technology in conjunction with the curriculum.  The specialist and 1:1 assistant teach our child the new language of the adaptive programs while simultaneously supporting his academic advancement. At home, it is the balancing act that any parent must accomplish of monitoring the amount  and subject matter of ‘screen time’ (again, with the understanding that this is his pen and paper in life!).

Motorized Wheelchair:  A 300-pound motorized wheelchair which facilitates independent mobility and provides a means of playing and learning through exploration. Although not as complex as other technology, let’s just put it this way:  forgetting the battery charger on a medical trip to Portland is a mistake you only make once. 

Transportation:
To travel anywhere with our son in a motorized wheelchair we need a van with a lift.

  • A van with a lift (that works!). Our experience of handicap vans is that they are either new and expensive ($35K-$50K) or are very used and have reliability issues.
    • Wheelchairs are big and heavy and bump into everything (especially when a kid is driving it)…including the machinery that powers the ramp.
    • The price of a new vehicle requires that a family literally run these vans until they’re all used up at 300,000 miles (if they are lucky).  Thus a very narrow used car market is what we’re left with, and we become part of the cycle (a 13 year-old van with 130,000 miles, a broken ramp and a prayer that we’re only half way through the van’s life)
  • School buses that can accommodate the wheelchair for every field trip.

Low-tech Assistive Devices:

  • Ramps & doors at home and school. A complete remodel of our home occurred in 2002.  We still have a remarkably small house but it was redesigned expertly to accommodate a wheelchair doing a 360-degree turn in each space.
  • Grab Bars. The location and number of these change each year at school and at home as his physical size and acumen changes.
  • The garden variety adaptations for special floor sitting, playing a game of cards, participating in PE, etc…

Recreational technology:  an adaptive bicycle; a bi-ski; a one handed guitar.  While all we actually own and use in this category is a bi-ski, it is our goal to have them all to play with someday. 

For each of these devices, people are the most important aspect for successful implementation of adaptive technology into the life of our son.  It is not enough to have a computer or a bi-ski or the newest walker (which for now sits on our front porch, as yet unused).  There are literally hundreds of hours that we as parents have spent in the company of professionals, friends, and family to learn how to best utilize each of the aforementioned items and the dozens of other items I did not mention.  If I had to state it simply, I would say that all the product and all the money thrown at that product does not create a successful life with adaptive technology.  The equation must include specialists who not only provide expertise but who are also able to understand and teach everyone else about the intricacies and specificities of our son’s condition in relation to assistive tech so that we can all help this young boy generate a successful life.




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