Last weekend I had lunch with another sister of a JRC student. We have a lot in common. We both have struggled with living with someone with dangerous behaviors and finally getting help. I still have a bite scar my brother Matty gave me when I was a child. As a child, when I had hiccups, I hid in the bathroom so Matty couldn’t attack me. I grew up with shattered windows and cracks in the walls from his head banging. When there is a threat to remove his therapy, intensive positive reinforcement with two second supplementary skin shock if needed, the memories and even nightmares return. While families, staff and the individuals get hurt from dangerous aggression, disability organizations maintain their silence as violence won’t bring in donations.
JRC families all have the same worries, the same fears. We know what it’s like to see a loved one so heavily medicated they are living in a chemical prison with an invisible cage, so there is no outrage. It was nice to be with someone who understands what I go through. I can feel I am not alone. We often get marginalized, isolated and discriminated against, and even have been referred to as “inner city and uneducated” and “cult.” We are told we just don’t care and wanted to put our loved ones away. People have personally attacked and even cursed at me. I have been banned from speaking and writing, even thrown out of Queens Special Kids Facebook page, just for posting facts with quotes, pages and reference numbers from a court decision favoring JRC after the administrator was critical calling the skin shock “a violation of human rights.” She said we couldn’t post an opinion supporting the treatment but I was just posting facts. I feel that while we JRC families are ostracized, we have each other.
While self-appointed advocates criticize JRC, I see hypocrisy. My brother Stuart lives in a group home in Brooklyn ended up on 20 medications. He once had a seizure and then fell and had multiple fractures. He had seizures and weak bones from all the medications he has to take for his behaviors. After the incident, no one told his family and he did not get medical attention for two days. Stuart sometimes wears torn clothes, even once packed wet clothes to go with our mother to visit Matty. No one made sure he put his clothes in the dryer. He is so heavily medicated that sometimes he will sleep throughout the day. That is no life. Yet, we keep him at his residence, because unlike some other group homes in New York, at least he is not being abused. The self-appointed advocates are silent about chemical prisons.
Not many placements can safely treat dangerous behaviors. After the recommended public school program staff expressed safety concerns with my daughter Talia’s behaviors, such as elopement in a school with multiple unmanned exits and a street full of trucks, I have kept her in her private school for which I have to pay the tuition and seek reimbursement. My mother just cashed in an IRA to help me. The New York State Education Department refuses to approve multiple schools when for some students there is no other safe alternative, forcing parents to go into debt to keep their children safe. Some therapists have resigned and children are not getting their services because the New York City Department of Education has taken many months to pay them. Again, these self-appointed advocates are silent.
I know I will fight for my family for the rest of my life, but I have comfort. Again, I am not alone. I have a family and we are all going through this together.