A Child with a Disability in a Cold World
He needs to learn to order his own food—something that is easy for most, but not easy for him. So you drive up to a fast food restaurant and roll down his window. He orders. The drive-up server does not understand him. She asks him to repeat. You have to prompt him. He repeats his order. She still does not understand, this time asking him to repeat in an irritated tone. He repeats. She still does not understand him, this time getting nasty about asking him to repeat. She treats him crudely. He does not understand that she’s treating him badly, and he does not understand why she cannot understand him. Your heart drops to your stomach. You learn what kind of world you are leaving your child in.
The Mona Lisa was known as one of the most timeless, beautiful paintings of all time. Notice I said “was.” Many men and women who have seen her consider her beautiful. People travel millions of miles to be astounded by her beauty in person. And yet, if you show a child of this generation her painting and you tell him/her she’s beautiful, the child may struggle to see her beauty the way Leonardo da Vinci or anyone of his time saw her. It is debatable if at the beginning of the discovery of the camera the world’s perception of people and things changed. In The Art of Insight by Eric Kandel, there is discussion on whether the introduction of the camera gave a more prominent, physical definition of the word “normal” and “different.” Prior to the camera, a painter was able to add colors and use techniques to not only describe what he/she saw as the physical beauty of a person, but how the soul permeated through the skin. Painters allowed the world’s perspective to be a different one, not all the same. Our perception of the world has been skewed—but skewed in unity. Most people today will see my child, who struggles ordering through the drive through and cannot look in the eyes of a camera, as they see the Mona Lisa: with misunderstanding. Leonardo da Vinci knew the woman painted in the Mona Lisa was not perfect, but he attracted millions to see her, encouraging people to view her through a different pair of eyes and see beauty in her imperfections. How to I leave my child in a cold world? Change my child or change the world?
It is the ever-present worry, the question we continuously ask ourselves. The question we fear so much we can’t even let the words leave our lips, because once the words hit air, it feels so real. What will happen to my child after I am gone? Who will protect him? Who will help him? The answer is not in the evolution of your child. The answer is in the evolution of humanity.
Love is at the core of our ceaseless parental drive, spurring us on to ensure our children have the necessary school therapy, home therapy, 24/7 therapy, and structured environments in order to mold our children to fit into the world. The world looks on as parents try to communicate with their children, engage and assist them in an outside environment, or to try to calm them down. The world looks on as parents feel a heavy burden, and with sadness and stress they attempt to get the world to take their eyes off of their children. The staring creates parental depression for the child’s future, but the child never notices the onlookers, or the perception in which they stare. Why? The best part of our children is the unstructured part of them. Our children realize it is OK to be just how they are before even we realize that. They were made how they were supposed to be. The lover in them, the comedian in them, the dreamer in them, the smile on their faces…if the world never sees that, how will the world turn from cold to warm?
People “looking” is truly a blessing in disguise. As parents, teachers, family, and advocates, we are here to not only protect our children and teach them, but to preserve them and teach the world to be more like them. The key to helping our children in a world after we are gone is to help the world understand them and be accepting of who they are, giving people the eyes of a mother—a mother who sees the beauty in her child, not the disability. If we change our children and not the world we live in, we will leave our children on an earth where they will struggle. If we help our children become the best version of themselves and soften the world, imagine what their futures would look like. As much as awareness for our children, it’s more for humanity, because humanity is who we are leaving our children to when we are gone.
Do not hide your children from this world. Every person who “looks” is an open door for you to change that person’s perception. That individual may never see your child again, yet they may meet someone with a disability again one day and they will treat them differently because they met your child. This world needs the love of your child more than your child needs the world. As parents, teachers, family and advocates, we are here to turn photographers into painters. Our children will be better off in a world full of painters, so teach the world how to paint. If Leonardo da Vinci can change the perspective of the world, why can’t we? There is always strength in numbers. Every parent is a Leonardo da Vinci.
Keep taking your child through the drive-through until he/she is understood.
Maria Rohan is a registered nurse at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Outside of the nursing field, Maria has dedicated her life to working with children with disabilities, trying to give the most opportunity possible. Having worked with children with autism for 10 years and having the autism diagnosis in her family, Maria writes interactive workbooks for children with autism. Molding each workbook to their musical voice pattern, attention span, and their likes. She currently sits on the PTO of STEPS Center for Excellence in Autism, and continues to let her love for the children plant seeds of movement.
This article was featured in Issue 62 – Motherhood: An Enduring Love