DisAbility sends a family racing towards a destiny no one is ever prepared to have. Our lives cross over the line of “normal” into the land of special. The terrain is beautiful, mountainous and rarely peaceful. As a result, we grow protective and try to shield our family member from the dangers of life living with disAbility.
We are peppered with the tyranny of low expectations coming from medical and educational professions and we begin to doubt our children can manage life without us. And, we can begin to settle into doing things for our children no longer expecting them to grow in their abilities.
As hard as we work to provide our children with a bright future, we might restrict their ability to grow more independent. In order for them to experience life, we might have to let go a little bit.
Ever since Mikelle, at three years old, reached for the control switch on her first power wheelchair, one of my goals for her has been to be as independent as possible. Real independence requires one to develop a level of judgment and self-confidence. Failure and risk come with exploring the boundaries of our abilities.
Persistence builds resilience, experience and eventual success builds a healthy self-esteem. I wanted Mikelle to have these abilities as she navigated her largely unanticipated world. After all, we never know what we are gonna get.
The question was how much risk was I willing to let her experience? How many mistakes could I handle?
Eventually, I realized I wanted Mikelle to understand failure does not define her nor does her disAbility.
One of many instances was as a teenager Mikelle wanted to go grocery shopping—by herself. I suppose she wanted to buy her own chocolates, some for all of her favorite people.
The idea of Mikelle traveling by herself in an inner city environment was frightening. Friends and family gave a thumbs down to the idea.
My challenge was to honor her request and ensure her safety. Together, we agreed on a plan.
We started by doing a walk-through, increasing her awareness of possible obstacles. We mapped out a route down a bike path in the park to avoid curbs not properly cut and as many stop signs as we could, narrowing it down to one busy street crossing. Then, we practiced this route many times.
When we felt confident she could cross the street by herself, we took the next step; navigating the busy parking lot and the most active grocery store in the city with the narrowest aisles possible. We introduced ourselves to the store management, I gave them my phone number and asked: “What if Mikelle came to the customer service desk when she arrived, could you provide a personal shopper for her?”
“Yes, we can.”
It appeared we were ready for a test drive. With list in hand and a twenty dollar bill tucked into her wallet, Mikelle headed out the door proud to finally be on her way to the store—without Mom.
I gave her sufficient lead time following her and hid behind every tree along the way. Yes, she checked on me. Periodically, she stopped under a shady tree to swivel around just to see if I was back there. Seeing nothing, she’d continue freedom’s pursuit.
Laughing to myself, I’d hold tight until she moved on. My heart started racing as we neared the busy intersection and I ran out of trees to hide behind. Hunkering down at the nearby coffee shop, I met a friend who I could send on recognizance, if necessary. As she disappeared into the cavernous entrance to the grocery store, I checked my phone. She should get through her list in fifteen minutes or so.
Right. My coffee was gone, and so was the fifteen minutes. Soon I was pacing, and my friend joked “Don’t worry, she just picked up some guy and sneaked out the back door.”
Forty-five minutes later she emerges from her grocery cocoon with balloons, flowers and a few groceries. The balloons were for her, the flowers for me.
Love and trust. Preparation and risk. It was a worrisome success, and it taught us both that she is capable of doing more than we both thought she could do.
Mikelle did move on to live independently with support on her own for five years. Things changed. I moved in with Mikelle into her place to stabilize her support team. As she grew older, the types of people working with her changed a bit, the stress of turnover began to take its toll.
I have come to know support for our family members with disAbilities is indeed like a box of chocolates. You can plan and prepare, but in the end, you don’t know how it is all going to turn out.
If you are a parent who leans g!
Remember to love and let go in little ways. Good luck!toward overprotecting and overdoing for your child, give them extra responsibilities around the house, let them walk a block home from school—you can hide behind the trees! Teach them how to laundry, fix a meal, sew on a button, take a small engine apart, build a birdhouse—keep thinkin