Our Life with Alexis

Emma Pivato, November 21, 2020

Who is Alexis?

Despite all her challenges, Alexis is basically a positive person with a trusting and open personality. The people who work closely with her on a daily basis come to know her and like her and to understand her efforts at communicating without words or signage. They see who she really is underneath all those layers of disability and love and respect her for how hard she tries to carry on despite all these challenges. They come to believe in her as we do.

The range of issues defined as developmental disabilities is very large, but because of the multiple and complex nature of her problems Alexis is considered to be at the ‘profound’ end of the scale. Alexis cannot see, has no formal communication system and no functional use of her hands. She can neither sit nor stand without extensive support and she also has a serious seizure disorder which causes her to stop breathing at times and require oxygen.

What is life with Alexis like?

Life with Alexis has been an interesting adventure: sometimes painful, sometimes tedious – but often rewarding. It has restricted our own lives in many ways and curtailed some of my career aspirations, but nothing brings me greater joy than Alexis’ beautiful, fleeting smiles. And when my husband, Joe, or I find a new way to make her life a little happier or better it gives us the greatest possible satisfaction!

Living and working with Alexis has always meant living and working with ‘the system’, the network of support services to make lives like Alexis’s life possible. I have considerable admiration for many of the good people who run it and help people like Alexis and her family to cope. But I have also been irritated by it from time to time for what I have seen as unnecessary limitations and technicalities. Because of that I have worked through the years to develop new possibilities for individuals with disabilities, particularly those facing extreme challenges like my daughter.

What has changed in the support system because of Alexis?

When Alexis was a preschooler, I worked to establish the GRIT program so that children facing similar challenges could have an appropriate developmental program in their own homes. Then, when Alexis reached school age, I spent many years pushing for and helping to develop inclusive school settings. When she turned 18 and entered the adult support system, I engaged with various officials to develop a new model that would allow her to remain in her own home with day program and residential support services provided, complemented by our own support of her part of the time. It is a model now used by many other families in Edmonton.
Forced creativity!

Before I had Alexis and needed to shift my focus to disability issues, I completed a Ph. D. with a dissertation on creativity theory. I knew then from my research that creativity is inspired by a need that must be met. I know now, from all my practical experience with Alexis that there is great truth in the adage that ‘necessity is the mother of invention.’

Joe and I have discovered or adapted many devices through the years to help Alexis be all that she can be. When she was first included in a regular school setting at age seven, I needed to find a way to control her head lag in order to reduce her drooling and to help her to appear more open and welcoming to the other students in the class. Serendipitously (and that is often a key factor in creativity) I happened to walk through the sporting equipment section at Canadian Tire one day. There I saw a selection of children’s hockey neck guards and I immediately purchased one. At home, I covered it with one of the many variously colored dickies available in those days, tucking the turtleneck fold inside to keep the neck part clean. When I placed this around Alexis’ neck, she immediately lifted her head and kept it there! It became a staple in her wardrobe during those early years at school.

When we started travelling with Alexis and had no access to lifting systems, I discovered the existence of hand lifting slings but they were large and thick. Joe created a compact, lightweight version that was easy to carry with us. Later on, when Alexis became too heavy to lift into her standing frame, Joe developed a special sling that could hook to the ceiling and take some of her weight while we adjusted her in the frame. And discovering a hammock with a raised back that allows her to relax in it without choking, and an electric foot bicycle that allows her to exercise her legs actively has greatly improved her daily life. But the toughest challenge we have ever faced and the one requiring the most creativity to solve was the challenge of providing her with adequate washroom facilities when she was away from home and from her commode with it’s built-in supports.

The development of the ‘dignity chair’

For a long time, I obsessed over the need to solve the ‘handicapped washroom’ issue for Alexis and others in similar situations. Adapted washrooms are of no use to my daughter because she requires full bodily support in order to be able to use a commode. Joe and I wanted to be able to travel with her for vacations or to visit family or just around the city, but we could not do so without solving this problem. Once we purchased a porta-potty and Joe build an adaptive frame around it so that at least we could have something she could use when we wanted to go on long trips with her. But it never really worked because Alexis did not feel secure in it and therefore could not function. There were other efforts like that but nothing that gave us a real answer.

Finally, when Alexis was 12, I realized one day that the only way to create a device where Alexis would be comfortable enough to function but was at the same time was portable enough to carry with us even on daily trips was if we could build a commode unit right into her wheelchair! She was at that point in need of a new wheelchair which meant that a seating technician needed to develop a new seating insert to place in it that would give her the support she needed to remain sitting upright. I managed to convince d him of her need for a built-in commode unit and he was able to devise one and to cover the outside of the wheelchair seat so that it was not visible to casual observers. This chair and its successors – and that is a whole other story! – allowed us to take her to Mexico 13 times and to the mountains an equal number of times. We also took her to Toronto to visit Joe’s parents and to Chicago to witness her sister’s MFA graduation ceremony from the School of the Art Institute of Chicago. But the time came when she was too tall and heavy, and we were too old ourselves to safely manage the lifting any more.

With the help of two engineering firms I finally achieved my ultimate goal of producing a wheelchair with both a built-in commode unit and a built-in lift unit. We then had two working prototypes based on two separate mechanical lifting techniques. We had reached what engineers call ‘proof of concept’. That is to say, we had demonstrated that such a chair was possible, that it could operate safely and that it could still look like an ordinary chair when not in use for its other purpose. But further refinement was still required if was to be of use to the many people in many different situations who need it. And I had reached the end of the time and money and energy that I was able to spend on this very complex project. Ideally, a big wheelchair company will take this project on and get it market ready but so far I have not succeeded in convincing any of them. I really hope that someone else will come along and pick up where I left off because this chair could dramatically change many lives for the better!

Who can work with Alexis?

The women we have hired over the years to care for Alexis and carry out her daily program activities have added a whole other layer of richness to our lives. When Alexis was younger and fitter, we generally employed young university students with a special interest in rehabilitation. They generally came from programs in physical, occupational or recreation therapy or from nursing, special education or kinesiology. However, there were always a few exceptions, young women who struck as having the right skills and attitude to foster the kind of life we wanted for our daughter and knew was possible. These young ladies assisted Alexis in participating in various activities throughout the city and helped her to maintain a very active schedule.

Alexis is older and stiffer now, almost 42 at this point, and much older than that in terms of actual functioning level because of the highly sedentary nature of her existence. At this point, she has neither the interest nor the resilience to participate at the level of activity and social interaction that she previously enjoyed. Alexis now needs a different staffing model and staff need a different skill set than was previously the case.

What seems to work best for Alexis now is to either hire older women with families of their own who have the understanding and compassion to be able to deal with Alexis as you would with babies or very young children, which, in some ways, is the level at which she functions. We have also had success employing single young people who are planning to build a career in this field. Currently, all of these people are immigrants to our country and come from the same ethnic background and our ‘Alexis team’ now seems to function like one extended family unit, which is a comfort and a blessing to all three of us. I don’t know if this will last but I can say that I have never experienced such peace and satisfaction in the hiring process as I have over the past few years. More importantly, Alexis seems more content and settled than she has been for a long time!

Over one hundred different people have worked with Alexis through the years because until recently we were hiring parttime staff only and, as I said, many of those were students who treated this situation as a temporary practicum and lasted for only a year or two at best.
All of these people, through their various personal interests and personality qualities have brought special gifts to Alexis and to us in terms of opening up our world and forcing us to become more flexible and broad-based than we would otherwise have been. In many different ways they have enriched our lives, perhaps, for Joe and me, even more than might have been the case if we had never had to travel down this path.

Conclusion:

Well that is our life and Alexis’ life in a nutshell! It has been a very different life than the one Joe and I planned together when we were a young family with two bright, active children. But then Alexis was born, and everything changed. And we changed.

Our two older children, Marcus and Juliana, are leading happy and productive lives elsewhere with their partners and children (two each). Joe and I each had a career although limited in some ways. And we also have Alexis and all the richness she has truly brought into our lives. As for me personally, although I never had the opportunity to pursue my theoretical interest in creativity, I have certainly had the opportunity to live creatively, and have made many interesting discoveries along the way!