On Monday, while I was waiting to get my sandwich from Schlotzky's, i surfed facebook on my phone. And I found the headline that has had my gut torn apart since. Do you remember the teenager I told you about a few months ago? Who the Autism community was trying to get real medical help for, and had been restrained inappropriately to a bed in a Chicago Hospital for a month? This is him. We failed. His mother and godmother have been charged with premeditated, first degree murder.
I don't have a severely autistic child. I cannot imagine life in their shoes. Even with Dominic's being moderate to high functioning most days, its exhausting. And I have what they didn't - a spouse, enough money to take care of the basics, and a support system. I never blogged about it, but a couple of years ago, literally just up the street from me, a mother who i'd never met shot her autistic son and daughter, and then herself. And I remember conversations with multiple people then making me promise them to call them first should I ever get to that point. We have people to help us and soft places to land. Many do not.
My point here is that Alex was not the first child, and Dorothy was not the first mother, who the system has failed... and who the community has failed. And we have some fixing we need to do.
From my friend, who tried SO hard to help Alex and Dorothy, Lisa Joyce Goes:
I don't have a severely autistic child. I cannot imagine life in their shoes. Even with Dominic's being moderate to high functioning most days, its exhausting. And I have what they didn't - a spouse, enough money to take care of the basics, and a support system. I never blogged about it, but a couple of years ago, literally just up the street from me, a mother who i'd never met shot her autistic son and daughter, and then herself. And I remember conversations with multiple people then making me promise them to call them first should I ever get to that point. We have people to help us and soft places to land. Many do not.
My point here is that Alex was not the first child, and Dorothy was not the first mother, who the system has failed... and who the community has failed. And we have some fixing we need to do.
From my friend, who tried SO hard to help Alex and Dorothy, Lisa Joyce Goes:
I cannot thank everyone who intervened on Alex's behalf during the last few months of his life. On behalf of Autism Is Medical, The Autism Media Channel, Dawn Loughborough and myself, we gratefully acknowledge that every single person who involved themselves went above and beyond for Alex. I still cannot accept, that the efforts of hundreds of concerned parents and activists around the world went ignored. I cannot accept that a 230 lbs 15 year old, was released to his mother's care after a steady regimen of restraints, sedation, and psychiatric medicines. I cannot accept, that despite the delivery of sound repeatable science to the MANY physicians who were given an opportunity to treat Alex's very real medical conditions, his physical pain went ignored by every single person in a position to help him. His angst and misery escalated and escalated. Pain, violence, 911, repeat. Pain, violence, 911, repeat.
This has been Dorothy and Alex Spourdalakis's life for YEARS.
When I met this family, I met a mother at the edge of her life and her sanity. I met a violent sick child who could not bear life in his own skin. After 20 days of working with them, I pulled away, only allowing myself to work on their behalf on the periphery of my daily tasks. Because, the intensity, depression and darkness I experienced as a mere satellite orbiting their existence was too much for me to bear. 20 days and I felt hopelessness, perpetual sadness, depression, fear and unspeakable grief. 20 days for me. This was Dorothy and Alex's daily reality. Please believe me, when I tell you...this family had NO ONE. No supports. No help. No community. No qualified competent medical care. No soft place to fall. No hope. So very many of us stepped in to help. We implored the hospitals to treat this child. We begged our federal and state agencies to do something. We filed complaints, started Facebook pages, circulated petitions. We did all these things to avoid the worst case scenario. And it happened anyway.
Despite all our best efforts...
The press ignored us. The doctors shunned us. The hospitals dismissed us. The agencies with whom we filed complaints sniffed around but did nothing to intervene on Alex's behalf. We presented sound repeatable science to the physicians charged with Alex's care. Science that HAS HEALED AND REVERSED THE EFFECTS OF IATROGENIC AUTISM FOR THOUSANDS OF CHILDREN. It was denied.
For Alex's sake, please invest in our community and in each other. Please honor Alex by telling your own story. Please speak OUT to everyone who will listen, about what has happened to this poor child who was made sick and then abandoned by the system that claims to create "wellness".
No comments:
Post a Comment