*The following is a visitor submitted article by Irene Diggs
Both of my parents had cerebral palsy. I have never met or communicated with anyone else in this situation. At this time in my life I am grateful for all I have learned through this experience and appreciate the opportunity to share a few insights as both a child of parents with cerebral palsy who faced insurmountable challenges and my experience as a teacher and administrator supporting children in special education. As teachers head back to the classroom to negotiate a new normal with a focus on kindness and support, we must remember that it is okay to allow our children to fail along the road to success or they may not build the necessary life skills to become successful adults.
My parents were born at a time when much less was known about meeting the needs of those with physical and emotional challenges. They divorced when I was a year old following an incident that took place after they left my paternal grandparent’s home. They left without telling anyone where they were going and according to my mother the police were called to their apartment by a neighbor. This reminded me of the day when as a new mother I asked her how she was able to change my pants. She told me that she slapped my legs until I held still so she could pin my cloth diapers. This situation may have had more to do with the incident at their apartment than my father not taking out the trash, which was her version of the story. It was too bad for both of us that she didn’t learn basic parenting skills or even how to handle her own personal care.
As a child my mother was adorable, with hair to her waist that was carefully brushed and braided, and often dressed like a lovely doll. The only problem was that no one took the time or had the patience to teach her to dress and care for herself. According to her sister this became even more challenging as she grew older. At around five I started learning how to take over for my grandmother and dress my mother, cut her food into small bite sized pieces so she wouldn’t choke, wash her hair with Head & Shoulders and complete simple adult tasks she would not attempt like sweeping, dusting, washing dishes and vacuuming. She was able to speak clearly, but only had the use of her left hand and some trouble with balance. My mother is now eighty-three and still very content with full time personal care. About ten years ago this became even more apparent after she broke her hip and had surgery to repair the break. According to the orthopedic surgeon she should be able to walk. I took her to additional appointments after her release from rehabilitation to reassure her since she did not trust the physical therapist. For over two years my husband and I spent time walking with her with a belt around her waist trying to build her muscles and confidence. None of this worked. She chose not to walk, even assisted and remained in a wheelchair. I often wonder how my mother’s situation may have been different if sometime during her life those around her had taken the time to listen to what brought her joy, engaged her passions and built her confidence; confidence that could have lessened her anger and enhanced all areas of her life.
My father was not as obviously impacted by his condition, he lived his life as a pleasant child. After his mother died I became a bit fearful of spending time with him because I really didn’t know him. I was only eight when he picked me up with a family I had never met and we all drove in a camper to the desert just outside of Las Vegas. The couple had a son a little bit older than I was and we hiked on rocks and set up cans on rocks and tried to shoot them off. On the very first day my father left me at the campsite with these strangers and hitchhiked to Las Vegas. I remember being very worried about him and how he would get home. He made it back to wherever he was living and after this incident I never allowed him to take me anywhere again, not even the zoo. He didn’t drive and it was just too much of a risk after that episode. I wonder how his life could have been different with more education, experience, a little support and engagement in something that would build his confidence and life skills.
I lived with my mother and grandparents until I was thirteen when she remarried a man with muscular dystrophy and polycystic kidney disease, Walter. The difference between them was his glass was half full and hers was always half empty. As a young man he learned to race cars with hand controls and joined a car club, The Kingsman, where he learned to overcome challenges, built confidence and made lifelong friends.
Today I volunteer at a horse ranch that provides opportunities and support for disabled riders. There are those children who come a couple of times and find no pleasure in this activity, but this is very rare. Most children are like Monica, a twelve year old girl with a smile that will light up the sky, especially when she is riding her favorite horse, Ariel. Her balance, poise and confidence have grown significantly over the past two years. She will be attending middle school in a few weeks and will carry these traits with her into the classroom. Her long beautiful hair and petite size remind me of my mother and make me wonder how different her life might have been if like Monica she had some activity that brought her joy, built her confidence and made her smile.
As an educator in a public school I attended too many meetings with parents, advocates and attorneys who left the child out of the decision making process. There were times when this was not the case, but an educational system focused on data produced through continual testing tends to support one goal for all students; to raise test scores. Unfortunately, this practice often allows children to be labeled by tests they can never pass and expectations they can never meet. This is especially disappointing when a child reaches middle school and they begin to more strongly feel their otherness.
Many students with special needs enjoy the arts. The arts provide another pathway to building knowledge, confidence, creativity and determination, yet these programs are often cut from the public school curriculum, especially in low-income areas, with a complete disregard for how valuable they are as gateways to success for so many students. I now teach a course focused on implementing the arts in the classroom, “Learning Through Arts and Music”, at California State University San Marcos. My experience as an educator for over twenty years has taught me that the arts are the great inclusive equalizer in the classroom. A few years ago I implemented a school wide project at a K-8 school on Marine Corps Base Camp Pendleton in Southern California, “Voices of Military Children”, through which children shared their voices through literacy, art and film. This military base is recognized as a location for families with children with special needs and about half of the students in this class had an IEP and a remarkably patient, supportive and creative teacher. In their award winning video, “My Voice, My American”, they all shine.
I know how it turns out when children are not allowed to struggle and fail, not allowed to follow their own passions on the pathway to becoming adults. I hope you will remember my story when considering uncomfortable truths and making difficult decisions that will impact children with physical and/or mental challenges for a lifetime.