I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…
To read more about our life, here is a link to my book:
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/