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Personal Stories

This Is the Song That Doesn’t End

By: Crystal Cheryl Bell

It seemed perfectly normal to me to awaken to the sound of running water, step out of bed into an ankle-deep house flood, and find my 2-year-old daughter sitting in the kitchen sink, where it looked as if she had been running the water for quite some time. (I worked nights in a factory and attended college days, making it quite difficult to awaken at 5 a.m. for any reason, including floods.) Aside from crossed eyes and a heart murmur, the doctors told me there was nothing wrong with her. (Riiiiggghhht.)

I eagerly awaited kindergarten. I knew her classroom, and possibly the entire school, would come to a full stop when she began attending. I sent a note to the principal the first day of school, telling her that I thought my daughter had a disorder similar to autism and that I thought she should be tested. “Pooh pooh,” said the principal.

Sure enough, the first week of school I received a note asking me to please ride the bus with my daughter to and from school in order to keep her in her seat. I politely wrote back and told them that since I had just given birth to my second child I wouldn’t be able to ride the bus with the first child. The bus driver eventually found two hefty 8th-graders to help keep her in her seat. About mid-year, a special-education team met with me. Soon she was in a class with one teacher, one aide, and three other children. They spent most days trying to keep her from jumping out of the 3rd-story window. (She wasn’t suicidal – just curious.)

Now she is 39. She has attended junior college, speaks Spanish fluently, and has become a proficient massage therapist. I am very proud of her. She also has yet to be hired by any employer since her early 20s. She strikes people as a little odd. She looks through her purse in the morning while her sister and I follow up with her children: “Have you brushed your teeth? Do you have your backpack? No, you cannot wear that belly-shirt.” Social Security says she is not disabled and does not qualify for benefits.

Once the educational system had diagnosed her problems (aphasia, dyslexia, multiple severe learning disabilities, ADHD), the doctors said they didn’t know what had caused her difficulties: “Probably we will never know,” they said. Like many mothers, I questioned myself: “Did I put too much Pine-Sol in her diaper pail? Was it because I didn’t get enough to eat when I was pregnant? Did I feed her too many carrots?”

Now that both of her daughters have been born with disorders, I think it can be said that the difficulties might be primarily genetic. Our family has lost the great Darwinian Struggle. Both girls climbed before walking, were slow to walk and talk and toilet train?. this is familiar territory indeed. One of their more memorable escapades involved our household awakening at 6 a.m. to the feeling that “something is not right”. A quick house-check found that both girls were missing. We discovered them outside in their diapers, one with her mother’s jacket on and a toilet-plunger in each hand, running screaming down the sidewalk of our busy street, the other calmly sweeping the neighbor’s front porch.

The youngest girl was diagnosed with a developmental disability and has had the full support of a regional center and special ed all of her 12 years. She has trouble with some thinking problems, but generally gets along well with others and is doing well in school.

Her sister has been diagnosed with ADHD, ODD (Oppositional Defiant Disorder), and depression. She has developed differently from her mother and her sister, and we’ve had more trouble acquiring educational services. Part of the “problem” has been that she reads well and is rather a little egghead. She reads Harry Potter incessantly, for instance, in between poking things into her skin, twitching uncontrollably when unmedicated, and packratting everything in sight onto her bed. She has a tendency to offend other children (and me!) by saying mean things that she doesn’t realize are offensive. After several years and a team of lawyers, our school district finally capitulated completely and offered to place her in a private school, where she has really started to shine.

I’m only 56 now. The adventure continues.

"This is the song that doesn't end,
Yes, it goes on and on my friend.
Some people started it
Not knowing what it was.
And they'll continue singing it forever just because
This is the song that doesn't end…"
- by Shari Lewis

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