It has been a long, long time. Fifty years. Visits have always been difficult but sometimes Nina is quiet and calm, especially if her ipod is going.
After Nina had been living with us for a few years and we had to face that there were no schools or services available for her, we found her a home in Pennsylvania with six other girls. My husband and I would stay in a nearby motel, the cheapest one we could find. We picked her up at her house, brought her back to the motel and tried to engage her in some pleasurable activity that could intervene in her constant rocking from foot to foot and swinging her head from side to side lost in a world of rhythmic sensations. Nina could not speak though she was already 6 years old. There were no ipods in those days so I turned on the car radio for her. She liked the music and pulled at us to dance her dance with her, side to side, foot to foot. I brushed her hair and gave her a long luxurious bath, leaving the water running which made her giggle with delight. Then there was not much more to do and, sadly, we drove her back to her house, a cheerful country home in which each girl had her own bedroom, decorated with pretty curtains, cheerful quilts and stuffed animals. Nina never responded to any toys except for the collection of plastic bracelets I tied together on a string. She liked to hold it up to her ear and shake it so the pieces clicked all at once.
Through the years we visited with Nina as often as possible, to see if she was safe, to give what pleasures we could. After the Pennsylvania home closed there was another private home, then, in desperation, the notorious New York State institution, Willowbrook. I put passionate energy into the political struggle there, demonstrations, organizing and break-ins to show news people the conditions. I was giving a big chunk of my life to my daughter in this way, but still searching for a way into her guarded, quiet, trancelike world. I felt I was always circling her, looking for a way to connect, but only able to offer her support.
As a result of a historic federal court action closing Willowbrook and reforming the system of care, Nina now lives in a home suited to her needs. Her apartment has two bedrooms, one for her and one for her roommate. The walls are painted with earth colors, golden yellows, sun set orange and melon. Last night I rushed to get to Nina’s place, anxious to be on time for her session with the young musician, Cori. Cori is playing the Chopin piano music he has gathered for her on a disc. I am so happy to see Nina, Cori and Louisa, her aide. I greet Nina with a hug and kiss and receive a wide smile back. Nina and I share a love of Chopin, for both of us the music calls to us from an earlier time when her grandfather sat with her beside him at his baby grand playing for hours. It seemed she could sit there forever, humming her flat hum which was her only speech. She lets me hold her hand and sit with her.
After Nina had been living with us for a few years and we had to face that there were no schools or services available for her, we found her a home in Pennsylvania with six other girls. My husband and I would stay in a nearby motel, the cheapest one we could find. We picked her up at her house, brought her back to the motel and tried to engage her in some pleasurable activity that could intervene in her constant rocking from foot to foot and swinging her head from side to side lost in a world of rhythmic sensations. Nina could not speak though she was already 6 years old. There were no ipods in those days so I turned on the car radio for her. She liked the music and pulled at us to dance her dance with her, side to side, foot to foot. I brushed her hair and gave her a long luxurious bath, leaving the water running which made her giggle with delight. Then there was not much more to do and, sadly, we drove her back to her house, a cheerful country home in which each girl had her own bedroom, decorated with pretty curtains, cheerful quilts and stuffed animals. Nina never responded to any toys except for the collection of plastic bracelets I tied together on a string. She liked to hold it up to her ear and shake it so the pieces clicked all at once.
Through the years we visited with Nina as often as possible, to see if she was safe, to give what pleasures we could. After the Pennsylvania home closed there was another private home, then, in desperation, the notorious New York State institution, Willowbrook. I put passionate energy into the political struggle there, demonstrations, organizing and break-ins to show news people the conditions. I was giving a big chunk of my life to my daughter in this way, but still searching for a way into her guarded, quiet, trancelike world. I felt I was always circling her, looking for a way to connect, but only able to offer her support.
As a result of a historic federal court action closing Willowbrook and reforming the system of care, Nina now lives in a home suited to her needs. Her apartment has two bedrooms, one for her and one for her roommate. The walls are painted with earth colors, golden yellows, sun set orange and melon. Last night I rushed to get to Nina’s place, anxious to be on time for her session with the young musician, Cori. Cori is playing the Chopin piano music he has gathered for her on a disc. I am so happy to see Nina, Cori and Louisa, her aide. I greet Nina with a hug and kiss and receive a wide smile back. Nina and I share a love of Chopin, for both of us the music calls to us from an earlier time when her grandfather sat with her beside him at his baby grand playing for hours. It seemed she could sit there forever, humming her flat hum which was her only speech. She lets me hold her hand and sit with her.
Then we go to her room where the real session begins. Cori plays another CD, this one of whale songs, to which Nina hums smiling peacefully. I rock the ocean drum and Cori plays a gentle beat on the frame drum. Nina sees Cori’s didgeridoo and jumps on her bed in anticipation, lies down on her back like someone readying for a massage. Cori plays the four foot long drone pipe for twenty minutes with continuous circular breath, holding the end opening a little above Nina’s body, first over her feet, slowly traveling up her legs to her abdomen, her heart center and then her forehead. Nina is laughing and smiling basking in the droning throbbing sounds that fill me too with life pulsating in sync with Nina.
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