The Echo

7/4/2019

One year ago, I put Echo Awareness into hibernation. I walked away. I needed a breather. Audrey Quinn's podcast on Bellwether and the developmental mental system had aired with accolades. I was tired. I was traumatized. I was fighting my own battle at home to regain my child with classic autism who had spiraled into a prolonged manic episode. She'd missed almost half a school year because she was unsafe to herself and others. She has a mean a left hook and phenomenal aim. We were desperate and searching for answers for her. We contemplated in-patient treatment, but there were no facilities in Delaware that had an autism unit. Our daughter would be placed with children who cut, who had eating disorders, who were rehabbing from drugs. All things a child with autism would learn without even trying to due to the nature of the condition. She'd be part of group therapy even though she was non-conversational with limited verbal and had slowed verbal processing. Essentially, she falls behind in conversations and when she does share she's usually several minutes behind and her vocabulary is limited. The one facility that evaluated her, the one with worst reputation but one of the only two in-state that treated children with mental and behavioral health needs, denied her admission. She needed more than they could provided. I was grateful. I didn't want to leave my beautiful daughter in place where there was no autism translator. While we were there a patient set a fire in the bathroom and the police came and put the facility on lock-down. We had to be escorted to our car by police.

With a new psychiatrist on-board, (we got booted mid-episode by the premier children's hospital in Delaware and Florida because her bipolar diagnosis came from an emergency room Psychiatrist in a Maryland hospital.) They lied to us about why they couldn't continue to provide her with behavioral health services. It wasn't that we missed appointments, we were dutiful. We weren't difficult parents. We followed instructions to a T. We were told that the hospital was restructuring its behavior health department to imbed pyschs on the units and they would have little time for out-patient visits. In April, we made the journey to the Mayo Clinic in Rochester Minnesota for a second opinion given she had several cases of altered mental status and seizure like behavior that resulted in ambulance transport from school to the same children's hospital that had dumped us. In May as I read the reports from our Mayo visit, I found the real reason. The hospital was upset that the bi-polar dx came from an ER doctor not their own - one in a small little facility that sat in the county seat of Cecil County, MD, 5 minutes from house, and where the last ICT escort took our family b/c we could not de-escalate our beautiful daughter from her dangerous episode.  The irony? Our children's hospital has contracted to operate the Pediatric unit at the hospital where we finally found the bipolar dx and where the doctor put his foot down and said no more speed. That doctor saved our lives. After a year, the contract was severed, and that smaller independent non-profit hospital is now merging with the largest healthcare system in Delaware. Guess that contract didn't work out. The  Mayo papers were "enlightening." In a time when there is a shortage of mental and behavioral health providers, where waits can be six months or more, hospitals are playing kick the can with our special children. Second opinions not welcome.

And from that moment, I knew I needed a break. That break has come to an end. There are some old Mazik oddities to tie ribbons around and the status of Bellwether in New Jersey desperately needs review because sometimes it's easier to watch children and adults die than it is to do YOUR JOB!