Inspired Writers Series: Kathy Tyson
As Autism Awareness month continues, I am honored to introduce you to the newest writer in the Inspired Writers Series: Kathy Tyson. Kathy not only works as a Behavior Consultant with high risk students in an alternative school; she is also the mother of Connor, who was diagnosed with autism four years ago. Wife, mother of two and passionate advocate for the promotion of compassion and empathy, Kathy holds a Master’s degree in education, Autism and ABA certificates, has seven years of teaching experience, and is currently working to earn her BCBA (Board Certification in Behavior Analysis). She is also a member of Cadigan Creative’s Editorial Board. Her professional and personal experiences make her a voice the world should heed in honor of Autism Awareness month. I hope you will read and share her story.
MOVING BEYOND AWARENESS: THE CARING CAMPAIGN
By Kathy Tyson
*Name has been changed to protect anonymity.
Plastic colored bracelets, monthly cause campaigns and the social media all help to raise awareness. Awareness brings dollars, dollars bring funding, and funding brings research and change. I would venture to say that the majority of Americans recognize the pink ribbon for breast cancer, the yellow bracelet for Livestrong, and the puzzle piece for autism. And because I have a son with autism, this month, Autism Awareness month, holds significance for me. I embrace this month’s media coverage and the support around the cause. I am grateful for the money raised and the possibilities that come with it. When my son received his diagnosis, I joined the awareness campaign. I learned all I could learn. I went back to school, traveled to lectures and conferences, and joined support groups. Then I told anyone who would listen all that I had learned so they, too, would be more aware. I thought if they were aware, they would be kinder to my son.
I wanted everyone to “get” him.
I wanted no one to judge him.
I wanted people to make accommodations for him so that he could navigate his way through the world.
The truth is, I started out to make people aware, but I know now that what I really want is much bigger: I want people to care.
I now work in a school for students who cannot be served in their public schools. Their behavioral needs exceed what the public school can provide, so their district pays to send them to this school. I have a client with autism in the school who is minimally verbal. Paul* has a Dynavox, which is a voice output system that he can use to communicate his wants and needs with others. Unfortunately, he uses this device minimally. His family feels he can get what he needs for himself at home without it, so they do not encourage use of the device. This makes teaching use of the Dynavox very difficult. As a result, for the last twenty years, this young man has communicated his wants and needs by screaming. He screams a great deal throughout the day. In addition, he suffers from OCD so severely that when he does his hygiene routine, if someone else comes into the bathroom, he will begin all over again. Like many people with autism, Paul’s routine provides him security in a world that otherwise makes him feel a tremendous amount of anxiety. However, because of his constant screaming and rigid routines, people are not always apt to choose to spend time with him. They assume he wants to be left alone, so they leave him alone.
Recently, Paul was scheduled to go outside for a walk. During the transition to go outside, he began screaming aggressively at his staff member. She told him that if he continued to scream, they would not go for a walk.
He continued to scream.
As a result, the staffer never opened the door to go. Instead, she turned around to return to the classroom. At this point Paul became escalated. He attempted to hit members of the staff and the wall, all the while continuing to scream. Ultimately, he was directed to go to lunch. On the way there, he stopped walking and began to cry. No one had EVER seen this twenty-year-old boy cry.
Later that afternoon, Paul was eventually able to take his walk, but the teacher decided to call his mother to share what had happened that day. Typically, when a teacher calls home to share news with a parent about a behavioral episode, the parents are not “happy.” But on this day, the teacher had an unexpected response when she shared with Paul’s mother that he had cried in school. The mother was shocked. She explained that he had only cried on one other occasion in his life. He had struck her, and his father scolded him and said that he could not hurt his mother. In that moment, Paul crawled into his bed and started to cry. His parents sat on the floor beside his bed and cried with him. Paul’s mother shared with the teacher that her prayer since her son had started school was that everyone working with him would see him like she did. She hoped that everyone would see that he was just a boy with feelings and emotions. On this particular day at school, her prayers were answered.
I care about Paul. The staff cares about Paul; in fact, his tears that day brought several of them to tears. I cannot make the world care about autism. But I can join Paul’s mother in her prayer that others will see that although people with autism process the world differently, they have no fewer feelings than anyone else. As a mother, I can help teach my son Connor to care about his place in the world. I can assure him of his importance. I can teach him the value of his self-worth. I can embrace his strengths and what makes him part of the fabric of my life. If we all focus on that with our own children — not just children with autism, but all of our children — we will be more than just aware of one another, we will care about each other.