The Joys and Challenges of Life
“We understand self-determination to refer to a characteristic of a person who leads them to make choices and decisions based on their own preferences and interests, to monitor and regulate their own actions and to be goal-oriented and self-directed.” 1
But…what happens when the “square” shape of self-determination does not fit in the “round” circle of real life?
I am mom to 3 amazing children. My daughters, Jordyn and Erin have grown into beautiful young women, both thriving in their chosen fields and moving into their adult lives. It does my heart good to see them happy. My son Zachary, the oldest of my children and no less amazing, is also growing as an adult. He too, is settling into his life independent of me. That process, however has not been without it’s challenges.
Zach was born with the diagnosis of Down Syndrome with “multiple system involvement”. In other words, there was not one system that was not affected by, either directly or indirectly, his primary diagnosis. He spent his first 11 months of his life, fighting for survival, in a NICU setting. As an adult, he functions at a 2-3 year level cognitively, does not walk independently and requires the care of another to feed, bath, dress and change him. His speech is limited, not conversational and very difficult for those who don’t know him to understand what he is trying to say. Additionally, he has diabetes with blood glucose levels and insulin needs changing daily. He is also an extremely social guy who loves music and videos. His favorite place on earth is a local amusement park. A favorite activity is a long Sunday car ride with a cup of iced Dunkin’, windows down, sunroof open and music up as loud as mom will allow.
All that considered, as many families faced with raising a child with special needs, we tried to live our lives as typical as possible. We balanced work with family life and activities. We ran from soccer games, to dance classes, to school events, to church activities. No matter where we went or what we did, Zach was always included.
I considered myself very progressive when it came to life decisions for Zach. I was the mom who had our county EI drive 40 miles to begin services while Zach was in NICU. I was the mom who corrected the school psychologist when he told me Zach had two options for preschool by telling him that there were actually four and I wanted him to make arrangements so that we could tour all of them together. Zach was the first student to participate in full inclusion in his home school. And, when he was 16, I began the search for day programs even though graduation would not be until age 21.
All of this came natural to me as I quickly learned that the more we planned, the easier transitions would be when the time came. Still, nagging at me for a good part of Zach’s life was the one thing that I could not bear to plan for. The one thing that I had no idea what would be best… his life as an adult. I knew about self-determination and felt strongly about the importance of individuals living their life as they chose. However, that was not the case with Zach. How could he tell me what he wanted when he spent his time just being happy living in the moment. He had no idea that a future existed, let alone give input as to how he envisioned his. How, as his mother, could I be entrusted with such an important decision when what I knew of self-determination would rely a great deal on his input?
I knew that this, like all else would fall on me to try to make the best decision for my son. I knew in my heart that he would need a level of care provided only by an ICF (intermediate care facility). I knew I wanted a place that had been established for years, with consistent, mature, kind and caring staff. Access to medical support and therapies blended with a family setting in the company of friends who he could interact with.
What I didn’t know was how I would determine what place would be right, when the time was right and more importantly, would he know that my decisions would be made from a place of love? I struggled with the fact that he could not provide input to tell me what he wanted for his life. I struggled with the fact that he would not understand why the only life he knew may have to undergo major changes. After attending many workshops addressing topics of transition into adulthood, self-determination and independent living I could not see how Zach fit any of the plans as presented. I finally decided to do the only thing I knew to do. I relied on my strong faith and found a quote to help me focus. It read, “Guides Will Appear”. I put it on our refrigerator in clear view so that I could reflect on it frequently. I stopped attending workshops and touring group homes. When I found myself worrying about his future, I would quickly dismiss it from my mind.
Fast forward to several years later. My husband became ill and had been in treatment for a year and a half. We were faced with the realization that his health was continuing to deteriorate. It was time to seriously consider getting Zach settled in his own place. Without long- term back up to care for Zach, we knew we were taking a chance with me continuing to provide all his care by myself. We wanted a smooth transition for this most important decision.
I made one phone call to a previous service coordinator (now supervisor) who I trusted. After that, guides did appear, doors opened and we found the perfect place for Zach to begin his life independent from his parents. Within 3 weeks, the move was made and he was settled into his “own” place.
It’s hard to believe that his move was over a year ago. It has been a year full of adjustments and a new normal. Zach is happy, healthy and enjoying his new friends and extended “family”. We visit often and have come to love his housemates and the staff who care for him. And, we still take those long Sunday drives, get Dunkin’, put the windows down and turn the music up, but these times it is as loud as Zach wants.
I have come to realize that for some of us, self-determination is not always the uniform square it appears to be. It can come in many forms. And, answers can come when we least expect them.
– K Huff