As a CASA volunteer, my first and only child to date was a girl who came into care with many profound special needs. When I first met her 10 years ago, and at 11 years of age, ”Sally” was in a wheelchair, was not toilet trained, with difficulties in swallowing. She was completely non-verbal and, weighing a meager 39 pounds, she had a medical diagnosis of “failure to thrive.”
At first, I have to admit, I felt a little out of my league. I could not imagine how I was going to establish a relationship with a child with whom I could not communicate, and the thought of taking her on outings in the community was somewhat daunting. However, I soon learned that Sally was so adept with gestures and facial expressions that I was soon convinced that I had just discovered my own hidden ability for ESP. I was not the only person that felt this way. Her foster parents and social workers and eventually therapist, doctors, teachers, camp counselors all were amazed at their own talent for understanding Sally without words.
I had no medical training for comprehending Sally’s condition, but found that if I attended her doctor appointments with her, the doctors and therapist were more than happy to answer any questions and to explain what was needed to help Sally enjoy a happy, rich life. Once armed with this “wish list“ of possible therapies and treatments, I began advocating for Sally to receive every service that would be meaningful in pursuing a fuller life for her.
First, doctors placed a feeding tube so that Sally received enough calories to allow her to grow. After this procedure, Sally doubled her weight within 6 months. Most important was that she still had the ability to consume food by mouth, as Sally loved to eat.
Once Sally was stronger, she was referred to physical therapy, where she learned to walk with a walker, and to behavioral therapy, where she was toilet trained in a matter of weeks.
One night while watching “60 Minutes,” I saw a program where non-verbal children were given an iPad programmed with a communication application. This seemed to be an answer for Sally, and her therapist soon made a referral to speech therapy. Sally received her iPad and began her training, where she excelled. This iPad became an especially important communications tool for Sally when her beloved “Poppy,” her foster father of 5 years, suddenly died. As I sat holding Sally in my arms and told her of the loss of Poppy, she expressed how she felt with her iPad. And yes, Sally was sad, but she used 12 other words to describe the depth of her feelings. ESP was not my gift after all.
After her foster father’s death, Sally moved from foster home to foster home (five homes in total that year) with none able to provide Sally with her deepest wish . . . to be a member of a family. At one point, she was moved to Frederick and had to change schools, therapist, doctors . . . everything. As her social worker was driving her to Frederick, she phoned me to say that Sally was anxious about this move. I asked her to put Sally on the phone with her communication device.
I said, “Sally, you may be going far away to a different foster home with a different school with different teachers and classmates . . . but let’s get one thing straight . . . you are never getting rid of me! Tomorrow, I will be there in your new home, I will be there in your new room, I will always be there no matter where you hide.”
We both laughed and laughed.
That is the most important part of being a CASA; listening to a child, advocating for their best interest but most importantly, showing up, letting them know they are not adrift in this world, there is someone out there who has their back, someone to whom they matter.
Recently, Sally turned 21, sometimes referred to as, “aging out” of foster care. She is no longer eligible for foster care, no longer under the care of DSS. Many people with disabilities that prevent them from living independently at 21 go into group homes. This is a placement decision that, though sometimes necessary, also keeps people like Sally from living full lives.
Sally always had one wish, which was to live in a home where she was a cherished member of a family. Three days before she aged out, I stood with Sally as she was granted permission to stay with the wonderful foster family with whom she has resided for the last 3 years. Sally’s “parents” were granted “adult guardianship,” a legal decision that allows Sally to remain with a family that loves her and is committed to her well-being for life.
Though I’m no longer Sally’s CASA volunteer; my role now is that of a close family friend. I continue to attend many of her medical appointments until Sally’s family is confident they are well versed in her medical history. Sally and I go on excursions in the community, to picnics, shopping, bird watching, and lunch dates.
Today, Sally is happy and healthy, and at long last, Sally has found her forever home.
Sometimes dreams do come true!