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Personal Stories

The Invisible Woman

By: Crystal Cheryl Bell

For as long as I can remember, no one has listened to me about my daughter. When she was a baby, I tried to tell the doctors that I sensed something different. I gave specific examples, but they said, "There, there, little mother. She seems fine to us."

As she grew she was extremely hyperactive, walked and talked slowly, and I told the doctors. And they said, "There, there, little mother. She seems fine to us."

By the time she was five, I had been doing library research, and I had her challenges narrowed down to just a few probabilities. I wrote and called the teacher when she started school. And the school replied, "There, there, little mother. We're sure she'll be just fine." And within a week I had a call from the school asking if I could ride the bus and sit in the classroom with her every day to control her. I said no.

I met with a team of educational experts, who had tested my child. They said she was hyperactive. I said, "I know." They said she seemed to have learning disabilities. I said, "I thought so." She was placed in a special education classroom with three other students, a teacher, and a teacher's aide. I met with more experts. One of them began to pooh pooh my explanation of my observations of my child. The head teacher brought him up short, however. She said sharply, "Aren't we just talking semantics here? Listen to her! She doesn't know our professional jargon, but she knows her child!"

As the years went by, I was told she would outgrow her difficulties. I was told it was not hereditary. I was told she had a normal IQ. None of that proved to be true.

She went to a community college and was resistant to receiving special help as a learning disabled person. She got mostly D's. After three years she quit, and worked in fast food restaurants for awhile. She lived on her own. She worked in a dance hall. Eventually she met a man -- a drug dealer who abused her. And she had two children. One is developmentally disabled. The other has learning disabilities. They both have speech and language disorders and are extremely hyperactive. The drug dealer is out of the picture, but my child has serious difficulties parenting these children. The children receive SSI and are in Special Education.

I started the whole process of applying for SSI for my child. We got a lawyer for the final administrative hearing. He saw us for five minutes when we signed the papers saying we would pay his fees. He saw us for another five minutes the day before the SSI hearing. He said he didn't think we could get SSI for my child. The chances did not look good. She isn't disabled enough. He wasn't really familiar with her case. He barely glanced at the paperwork I gave him giving specific examples of the challenges she has which would relate to getting or keeping a job. "There, there," he said, "she doesn't seem very disabled to me."

I wish I could tell you we have a happy ending here. My child has problems with welfare, the GAIN job program, her HMO, parenting her children, getting qualified childcare for her children, and many of the daily details of living which most of us take for granted.

We are still waiting to hear from SSI.

Our LD children (adults too) are invisible to most people. And we, their parents, their advocates, are not readily heard.

In the movie, "As Good As It Gets" I cried when the mother finally got proper medical care for her little boy with asthma. My daughter is thirty-two years old now. She is still invisible, and people are still telling me, "There, there ..."

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