Supporting People as the Age
Moving with the Best Information We Have
Eva and Cindy at a Rally at the Minnesota State Capital asking Congress to keep their hands off Eva’s disability benefits.
I’m Cindy, a parent to Aiden and Eva, who are 26 and 24 years old. I am married to Kristin, who has been a stepparent to Aiden and Eva for the past 10 years.
Eva was born with cerebral palsy and uses a wheelchair to get around. She has a hard time seeing and has an intellectual disability, which means she sometimes needs help understanding what is being said to her and getting support with daily living tasks. But this only describes a small part of Eva. She has interests (TV, audio books, modern dance, spending time with family), preferences (red grapes, not green), and a thousand other things that make up who she is.
Introducing her to new direct support professionals (DSPs) has always felt like one of the hardest, most important things I do. If you put your first child in day care, maybe you remember the tidal wave of feelings: Is this the right time? Is it the right place? Have I told them everything? What if it’s the wrong decision? Maybe I’m not ready!
A version of those first-time feelings follows me whenever I accompany Eva somewhere new, whether it’s meeting an individual DSP, a bus driver, a classroom teacher, or anything. And honestly, the feelings are always that big.
How can I ever be sure I’m making the right decision? How can I be sure I’m giving someone the best picture of how great Eva is? How immensely loved she is? And how the quality of her care is at the center of my thoughts today and every day? How can I feel I’ve done everything and am ready to put her in someone else’s hands?
Ready can’t mean certainty, a feeling that I know we’re doing the best thing, and it will work out great. Instead, we move on what we believe is our best plan for now.
Planning for the Future
How is this an article about aging? Because for me, and others whose children require lifelong DSP support, this agony never stops. In fact, it becomes greater. As you and your child inevitably grow older, your time and ability to care for them grow shorter. What I have had to face over time, in moments big and small, is that just as our kids age faster than seems possible, so do Kristin and I. Do we ever feel ready to hand over care to others? I doubt it. However, we have taken steps to ensure that Eva works with us and others to make a plan for her to always be cared for and loved. We have changed this plan countless times. The older Eva gets, the more concrete the need for the plan becomes.
A year and a half ago, Eva decided, with our input and support, to move into a group home. She had wanted to live separately, but not too far away from us. The group home provided that, as well as the level of care she needs. Were we ready? Was she? Who is to say? But we proceeded.
Five months later, we moved her to a different home that has been a far better fit. In addition to Eva dreaming of someday living separately from us, we were motivated by the knowledge that Eva was getting different experiences by living separately. We didn’t want such a big move to happen during a crisis—an illness or injury of mine, for example. Knowing it would be a big, challenging process that would stretch all of us, we wanted to do it as proactively and thoughtfully as possible. I cannot overstate the joy we feel knowing that she is receiving excellent support and is happy.
Despite knowing that logically, we were scared and uncertain so much of the time. Moving a child out of their childhood home is not an event. It’s a process. And for us, it is a process with many stumbles, hard moments, and questions. Yet, there is also growth for all of us, and we take joy in the triumphs.
In this last big move with Eva, I started thinking about “ready” differently than I had in the past. Ready can’t mean certainty, a feeling that I know we’re doing the best thing, and it will work out great. Instead, we move on what we believe is our best plan for now. We know things will change, and there will be surprises. But we will go forward with more knowledge and be better equipped this time. We go forward with all our love.