How It Is

This Daughter Of My Heart

Another morning began in the usual way for me–coffee, out to check the pool (one hapless little frog needed to get pulled out of the water), then to see how my vegetables are growing. My eggplant bushes are flowering quite profusely and one has two babies on it, one of the cantaloupe plants is flowering too, and my pride and joy today: there is a teeny-tiny butternut squash that looks healthy and strong on its vine.

I was up earlier than usual and the house was still quiet so I came back in to read the online NYTimes. One article caught my eye; an article about parents dealing with Sabrina, a young girl on the autism spectrum. You can read the article here. I hope you will. Every muscle in my body clenched up as I read the article. I didn’t exactly have a flashback but, dear God, I knew what was being described down to the core of my being.

There is a ‘severe mercy’ for parents like the Benedicts, like Sherod and me. We discover that there is nothing, I mean nothing, our child can do that can separate him, her, they, from our love. In our experience, love was not enough. When we finally found a behavior therapist who understood what María actually needed, she explained we simply had to quit trying to discuss her episodes of out of control rage with our girl. Insight would not lead to behavior changes. Whatever understanding she might gain from us trying to talk about the rage reinforced the behaviors we so dreaded. Once she had de-escalated after these episodes, we needed to learn to go on as if nothing had happened, even if she had left us, or herself, bleeding, bruised, and overwhelmed. The only way I was able to follow that guidance was to let go–of my fear, my anger, my despair, my very primitive instinct to strike back. This was a kind of radical forgiveness I could never, ever have learned if my daughter hadn’t been entrusted to my care.

Carol, the behavior therapist who worked with us, helped us open space for María to live in our home until she was about to turn 16. That NYT article paints the picture pretty thoroughly–adolescence on steroids is not a pretty thing. And then, one day, Carol and the rest of our girl’s support team sat us down. María was now too strong, she was becoming increasingly cunning, she was at high risk for running away, and the SIB (self-injurious behavior) was becoming unmanageable. When María turned 16 a few weeks later, she would qualify for placement in BARC Housing–an intermediate care facility in Davie, a few miles from our home. ICFs are actually nursing homes. This one was geared to individuals with cognitive and behavioral challenges. Providentially, a bed had opened up at BARC, which in and of itself was sort-of miraculous. If memory serves me correctly, at the time there were only 1000 beds in ICFs in all of Florida for people with all the challenges María was burdened with–and in that year, Florida’s population was close to 19 million. Think about that ratio!

In the very last week before she was able to move to BARC, our girl spun out of control worse than ever, and on the advice of her team, we Baker-acted her, had her admitted to a psych unit as a stop-gap measure while the last pieces were put in place for her move. On June 5th, 10 years ago, our girl was taken to BARC house from the hospital. That day was especially anguishing because it was the first anniversary of my mom’s death. And along with the anguish and grief, there was a relief I felt more than a little guilty about. For the first time in over a decade, Sherod, María and I were all safe.

Every few years, we tremble. A note will go out to the families of BARC residents to ask for help to plead with the state government. All across this country, the push has been to move to a model of ‘community based care.’ On paper, it sounds fabulous; you and your loved one will be wrapped in all the support necessary so everyone can thrive. You’ll get help all the way from folks to cut your loved one’s toenails to behavior specialists, to highly trained home assistance. But all that costs money. A lot of money. And state legislatures all across the country have cut, and cut, and cut, funding so you end up being on endless waiting lists just to get the most basic services; 5 or 10 year waiting lists are not unusual. When Florida’s legislature moves in the direction of cutting funding to ICFs, it is a matter of life and death for our girl and for most, if not all, the residents in need of the care she gets at BARC. So we plead, we ask friends, neighbors, anyone and everyone we can think of, to help us lobby so those cuts won’t go through. To date, our efforts have worked. That in no way reassures me that cuts won’t come that will jeopardize the sustainability ICFs

I share all this because it falls under the umbrella of “Mental Health.” There simply are no words to describe the white-hot rage I have felt since last Tuesday, hearing so many politicians in Texas and in the Senate, talk about the Uvalde massacre in terms of “issues of Mental Health” that besieged “one evil young man.” The ones who squawk the loudest, trying to frame what happened in terms of a single individual with mental health issues are the exact same ones who have made it brutally difficult for our most vulnerable to get the help and support they need. In that regard, those politicians have as much or more blood on their hands as Salvador Ramos.

If you read this blog post, I hope you will consider sharing it with others. Even more, I hope you will read and share the NYT link with others. I know we don’t, and I suspect the Benedicts don’t, ask for sympathy or pity. Rather, I hope our story and theirs might help someone see the kinds of hell-scapes that exist around mental health in this country. It will take a lot of us for asking more of our elected officials for anything to change.

One thought on “How It Is

  1. Ahh, my friend. I like to think that you and I read the story about Sabrina and her family at the same time. It took my breath away reading about the similarities between a family that I hold in my heart and another that I don’t know. I thought about sending it to you, but I hesitated not wanting to burden you with all the memories. I should have known better. You have always found a way to take something so personal and painful and share it with the world. Pequenos beijos

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