The other day when I was working with one of my students with multiple disabilities and a visual impairment, I heard heartbreaking words from a grieving parent, “Why are they still coming?” he asked with sadness.
Supporting Parents During Home Visits
When the father asked his question, he did so without malice. He truly wanted answers. The comment was not meant to reach the ears of early childhood teachers and therapists, but it was a profound one! While the physical therapist and I could see great strides the child was making, the dad was clearly disappointed. In our view a child who should not be sitting up was. A child who should not be making choices clearly is making them. A child whose vision was a diagnosis of blindness was tracking and fixating on objects.
The therapist and I were not offended as we understood the underlying message in the young father’s words. “Why isn’t my child doing what my other children did at this age? What good is the therapy if he is not walking or talking? Why make numerous appointments if all he will ever do is struggle and will never be, in the world’s definition, 'normal'?”
I chose my day and time to talk to the family, which was several weeks later to address an understandable question: “Why are they still coming?" My first response was to shout, “Because all lives matter!”
Discussing The Value of Early Intervention
When I saw the dad two months later, he smiled and nodded, as did I. There was no anger directed at me, nor was I upset with his comment, as it is a very good question when facing unbelievable obstacles for your beautiful child. Many parents realize at a certain time life isn’t fair. However, as a vision teacher, I want to bring hope into the lives of every family I work with.
When I address hope with the families I make sure I am not misleading and being too “Pollyanna-ish”, as is my tendency at times.
We talked about previous students I have met who had not had early intervention. I was reminded of a young girl in the third grade who was taken away from her parents because they simply pushed her into a corner while she screamed. In their minds, what did it matter? The young girl was curled into the shape of the letter "c", and was totally blind and miserable. Her legs were twisted and distorted, as were her hands. She was the size of an average third grader, so for her new caregivers, the child's weight was enough to hurt their backs.
The young father listened intently when I told the story of the young girl whose body is now permanently in the shape of a c.
I continued talking while he listened. We want our children to be happy, to have the best quality of life, and to be as independent as possible. I showed him a YouTube video of student of mine who, as a toddler and young grade school child, could not walk, but who now walks, runs, and preaches at his church.
He was amazed and continued to listen.
Identifying the Child's Interests and Strengths
Name his likes for me. He likes music correct? The father agreed. He likes people. He smiles and socializes through noises. His feet are in perfect shape, as are his legs, hands and fingers.
How nice it will be when he walks across the floor with a gait trainer or a simple belt, makes choices through switches and other devices.
We discussed that there would not be issues with gangs or drug use, and how all parents will struggle with their children, with or not they are disabled.
He smiled and nodded.
Shifting the Paradigm Through Parent Education
Parent education should be provided through teachers and therapists, and hopefully will help parents to understand why we continue to come weekly and work with a child who is different from others.
When there is a shift in paradigm, the family sees the hope for their child who needs therapy, and whom the world will see through different eyes.
We discussed the fact that no one is completely independent, as we as humans are all interdependent on each other. After all, I cannot drill my own teeth, I live with my sister, and I go to restaurants, since I am not known for my cooking skills.
Why are we still coming week after week? It is because all humans have the right to learn and have the best life possible. Everyone can make a true difference in the community, no matter how small or large the contribution.
In Dallas, Texas and after the shooting deaths of many courageous police officers, Dallasites have come together for peaceful protest and want an end to the violence, as all lives matter!
I thought about my students who have special needs after watching the chaos in my own city. I work hard for my students and their parents because, like the peaceful protestors claimed, “All lives do matter!”