Urgent need for better positioning
In the prosthetics clinic where I have volunteered in Ibarra, Ecuador for the past eight years, I realized there was an urgent need for better positioning for children. I discovered ADA and found that the methods used could effectively be translated to this setting. About five years ago I began to construct equipment from cardboard. This work evolved from borrowing tools and working on the floor to having a workshop constructed by the local government, working with various health providers and parents, training an interested individual, and supervising a half-time adaptive design workshop year-round, with assistance for the past two years from the Dorothea Ross Foundation.
A few of the children that we have seen are described here:
Angel was a fragile baby we saw in 2012 who required extra support for his head. It was difficult to position him comfortably for feeding, relaxation or interaction. He wanted to be held all the time, yet the active nature of carrying frequently caused his airway to close or his large head to drop uncomfortably. Keeping his head in a neutral position was essential. After experimentation we discovered how to build a headrest with extra space to accommodate him and how to allow for several alternative positions for him.
Samantha had no experience with independent sitting. Samantha was evaluated and measured during a week-long class with health care providers from Esmeraldas in 2012. It was decided that she would have two alternative positions in the seat: laid back for relaxation and upright for function. The class devised a multi-positional support wedge that, because of its peaks and valleys, was dubbed “Chimborazo” - named after the largest mountain in Ecuador.
She was pretty angry when we measured her and again when we placed her in her seat, beautifully decorated by her mom. Her mom hoped that Samantha could play independently for short periods.
Two weeks later, her mom reported to us that Samantha loved the seat in its upright position and wanted to use it all the time. She played independently and her mom could do things that she wanted and needed to do around the house. This assertive little gal wanted the independence that upright sitting provided and had no use for the more relaxed but less functional tilted-back position.
I met Diana in 2008 at a visit to a school for special needs. We evaluated several children and tried to position them with materials at hand such as washcloths, pillows, or pieces of wood. These adaptations were clearly inadequate. Diana spent most of her time lying in a crib, since her scoliosis made sitting uncomfortable in her standard wheelchair.
This visit was what stimulated me to search for creative solutions to positioning problems and led me to ADA. I saw Diana a few years later, and with her parents, her school personnel, and our orthotists, we devised a combination seat with a custom molded thermoplastic back, a wood seat heavily padded with custom cutouts formed to her shape, cardboard supports for her feet and trunk, dacron seat belt, cardboard tray, and customization of her commercial metal and plastic molded headrest. Although this sounds complicated, only the thermoplastic back required specialized tools and techniques. When Diana was lying in a crib she appeared infantilized, but Diana sitting in her wheelchair is a teenager in the midst of whatever is happening.
Anderson and Nixon are brothers 8 and 10, with multiple disabilities. Since neither boy walks, their mother and grandmother each carry one of the boys on their backs most of the time, in spite of their size. Anderson is better able to sit and use his hands, while Nixon is more engaged and involved socially. During a week-long course in 2013, mom and grandma adapted a typical child’s chair for Anderson. For Nixon his wheelchair was adapted to fit him and allow for for a functional position for interaction, and a typical child’s chair was also adapted more extensively than Anderson’s, so that the two could sit at a small table together. After the course, their mother returned and worked another week to construct a stander for Anderson.
When Joel came in in 2014, he was clearly a really smart guy! Nine years old, gregarious, interested in everything. Joel worked hard to control his movements and easily got carried away with excitement, effort, or distress - which sent his arms and legs flying. Joel wanted to sit more comfortably so that he could be relaxed and use his hands, and to stand.
Joel lives in Tulcan up by the Colombian border, two hours away from the adaptive design center. He was able to visit only for two sessions for trial and error.
Getting Joel seated more comfortably in his wheelchair was the easiest task. He needed firm and close-fitting support to avoid the thrusting and flinging movements that knocked his whole body out of alignment. He needed a tray with elbow blocks to keep his arms in front of him. Standing was more challenging but with the addition of ankle braces (AFOs), elbow blocks, and upper trunk support, he was able to do so.
It became very clear that Joel had tremendous communication potential. Joel is mostly non-verbal so communicates in every other way - expression, eye gaze, and gesture. He had knowledge of some symbols and letters. Complex communication was an area that Joel had explored very little. A brief session with communication symbols and pointing indicated that Joel could point to 2” size squares.
During the two weeks between visits the therapists constructed a communication board with several overlays. When Joel returned, the fittings for the wheelchair and the stander went smoothly. But the communication “system” seemed very confusing to his parents. I realized once again how non-intuitive it is to develop a communication system. His parents were pro-active advocates for Joel. But without ongoing support they had no idea how (or why) to move beyond their natural communication methods to a symbolic system. In the brief time we had, we talked about giving several choices, refining his pointing ability, and teaching symbols, letters, and words.
We haven’t seen Joel again over the last year and a half. I wonder how he is progressing, especially with communication. Did introducing these ideas open up doors and exploration, or simply overwhelm him and his family? I hope to meet up with Joel again some day!
About the Author
Kit Frank has 40 years’ experience as an occupational therapist and specializes in assistive technology. She has volunteered with the disability community in Ecuador for 23 years. Kit has led the Adaptive Design Workshop since 2008, providing custom adaptive equipment such as standing tables, adapted seats, trays, easels, and wheelchair adaptations. LEARN MORE ABOUT KIT FRANK AND PROTESIS IMBABURA.