My business brand is sharing how to heal your heart with art. I promote art because it helped me through the tough years and I felt a calling to share how I healed by creating art.
My number one passion is advocating, speaking, and sharing disability awareness either in print or in sharing my story as a motivational speaker. This passion has been part of my life for many years. My son Jason had spastic quadriplegic cerebral palsy. I learned so much from this beautiful boy and realized my life changed being his mother.
I soon learned how disconnected the community was to accepting people who were different like Jason. Wheeling Jason in a shopping mall we often were stared at or mothers would take their children’s hands and move them away from Jason as if they would catch what he had.
When Jason was first diagnosed I took him to Shriners Hospital. I was looking for help. They promoted helping and providing care for disabled children. Why not try? Unfortunately, we did not receive a good reception. I felt the coldness in the room as the doctors examined Jason without even attempting to talk to him. They didn’t realize he could understand verbal language, he just couldn’t express it. We walked away from the intake knowing we would not be accepted in their program and we never did hear back from them. They advertised their services on TV and I saw poster children were either walking on their own or with support and were able to communicate verbally. I believe Jason did not fit their criteria as a poster child. He was too physically disabled.
When Jason was eight years old we had to make the hardest decision in our lives, place him in a facility where he would get better medical care and 24/7 services we were unable to provide. At home Jason was not offered SSI or Medicaid because the powers to be considered our income to be higher than their standards. We lived on my husband’s income as a family of four. We were living from pay check to pay check without any extra money. We were struggling. Jason was getting services at Easter Seals and we paid them according to an income scale.
When Jason moved away from our family and lived in a facility we chose, he received all the services he needed. He received a monthly SSI check, Medicaid, physical therapy, occupational therapy, nursing care, doctor care and the best medical services available at Hershey Medical Center. Everything was totally funded. I went back to work full time. We were a normal family again… you would think. No we were hurting, missing our son and brother. We were not given choices back then. Jason did thrive at his new home and he adjusted well, for which we were very grateful. However, we were struggling to accept Jason leaving our home. In hindsight, if we calculated all the Federal/State funds allocated to care for Jason in his new home for twenty years, in comparison to reallocating the funds to provide handicapped accessibility to live with his family, I bet it would have been less costly to provide funds for him to live with his family.
This is why I will always advocate for the rights of the disabled community. You would think our society has improved, maybe it has, but if our president continues to mock disabled people as he did during his campaign, there is no hope for those in our society who are different. #disabilityawareness #discrimination #motivationalspeaker