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Mother Knows Best

by Peggy Chong

Editor's Note: The following article is reprinted from the Fall, 1996 issue of the Minnesota Bulletin, the newsletter of the NFB of Minnesota. Here is another mother of a severely disabled blind child who found help and support from the NFB.

 

A few years ago Darlene Holm adopted a little girl she called Bethany. Bethany suffers from shaken-baby syndrome. Among her other disabilities, Bethany is blind. Darlene's other children, who are all adults now, welcomed Bethany warmly into their family as well.

Darlene knew nothing about the educational implications of Bethany's disabilities. As any responsible parent would do, Darlene turned to the professionals for advice in bringing up Bethany. She now is grateful that she didn't just stop there.

The professionals told Darlene that it would be highly unlikely that her little girl would ever recognize her as Mommy or bond with the family. She would never walk. Sending her to kindergarten would be good for her socialization, but they shouldn't expect her to learn much.

But Darlene did not accept those limitations. She worked with Bethany in all areas of learning as she, too, continued to learn. One day Darlene came across the National Federation of the Blind. She was encouraged by the upbeat, can-do philosophy of the Federation. Darlene began to learn Braille herself. She saw the importance that Braille could play in her daughter's life. Things were looking up.

In the fall of 1994, she enrolled Bethany in kindergarten in the Montecello Public School system. It turned out to be a great experience for both of them. Darlene took an active part in Bethany's classes and at home she reinforced what was being taught at school. Bethany was learning! What's more, Bethany was learning to walk, something the professionals said Bethany would never do. But things were not all a bed of roses.

When Bethany had been placed in Darlene's home, before the adoption was final, Darlene called her new daughter by her new name. But the professionals refused to use the name that she would legally have after the adoption. They said that their policy was to call the children by their legal name. Darlene tried in vain to explain how, being a special-needs child, this was causing unnecessary confusion for her daughter.

Then the 1995-96 school year began. Darlene wanted Braille for Bethany. After learning much about the IEP (Individualized Education Plan) process, Darlene got Braille into the IEP for that year. However, Braille was not taught until January of the school year and then minimally at best.

Bethany's regular classroom teacher this year did not like Darlene coming into the classroom as it was a distraction. The teacher sent notes home reporting that Bethany was not interested in schoolwork and was having tantrums. Darlene tried to make suggestions to the teacher and her aides. She asked for more specifics on class work so she could introduce it to Bethany at home, thinking that this might ease Bethany's anxiety in class. But again, nothing came home.

To Darlene's dismay, she discovered that the teacher was unaware of how to work with a blind child in her classroom. On pajama day the teacher asked the children 'What do I have on my feet?' It was fuzzy bunny slippers, but the teacher did not offer to let Bethany touch the teacher's feet so she could see what they were. Afterwards, the teacher reported in the notes sent home that Bethany was not interested in class. Many other examples were given of the teacher's lack of understanding.

The last straw came on a Friday night while preparing for Bethany's bath. Darlene noticed bruises in the shapes of fingers on both of Bethany's arms. She was justifiably upset. The note from school that day just said that Bethany had a bad day. There was nothing that explained the bruises on her little girl. Monday morning Darlene called the principal who knew nothing of the incident. Darlene later learned that Bethany had thrown a tantrum and had to be removed from the classroom by three adults.

Darlene called for a mediation hearing to resolve the many issues regarding her daughter and the unfulfilled IEP. Janiece Betker and I, representing the National Federation of the Blind of Minnesota, attended the three mediation meetings that took place last winter. The issues on the table included:

1. Darlene must see the video of her daughter made by the school. The school said that she could only see the portion of the tape where Bethany was eating.

2. Darlene must be allowed to come into the school and observe her daughter's class. On two of the five times that school year when Darlene had visited the class, she found her daughter just sitting and doing nothing. Darlene was convinced that this inactivity was the cause of Bethany's inattentiveness in class. All of us on Darlene's team found it odd that an elementary school should discourage parental involvement or decide that five visits in four months are abnormally high.

3. The teachers and school officials must have some blindness training.

4. Bethany must be given more than just 1/2 an hour of Braille a week. (Braille lessons finally began in January of 1996.)

5. Bethany must be kept in kindergarten for one more year.

6. Better communication between home and school must be developed to inform Darlene of the things going on at school.

7.New assessments must be done to determine Bethany's abilities.

8. The school must design better reporting methods to use when a student is injured in any way.

9. Qualified substitute staff must be found when Bethany's regular para-professional calls in sick. (Darlene had refused to send Bethany to school three days because the substitute had no experience with Bethany's disabilities and would just let her sit by herself, without anything to do. The school called it a major truancy concern.)

It was clear from the beginning of the mediation meetings that the school officials and special education representatives did not want Bethany in their school. More important, they did not want Bethany's mom butting into their business.

After several minutes of discussion, it came out that Darlene could not see the video because it was a tape of all the special-education students. Bethany was only taped during the eating portion, the only part she was told she could see. When we discovered that the tape was not all of Bethany, we asked the school personnel why they did not tell Darlene this months ago. All she wanted to see was the footage of Bethany. There was no reply. This was typical of the arrogant attitude taken by the school officials with regard to all of Darlene's concerns.

All issues were resolved in the first two meetings except grade placement for the next school year, staff training, and the amount of Braille hours per week.

Between the second and third mediation meetings, Darlene thought long and hard about keeping her daughter in a school system that clearly did not want her there. The Academy for the Blind in Faribault was out of the question for Darlene. Bethany was finally calling her mommy and bonding to the family, something Darlene was told would never happen. She did not want to disrupt Bethany's life or shatter her trust, perhaps forever.

Many members of her extended family had begun teaching their children at home. She also learned of other parents with children like Bethany who were turning to home teaching because the public schools were not welcoming their children.

At the third meeting, Darlene announced her intentions to home-school Bethany for the 1996-97 school year. The relief on the faces, in the body language, and in the voices of the school district representatives could not be mistaken. They agreed to five hours of Braille and travel a week, Braille instruction for the summer months, occupational therapy, physical therapy, and speech and language support services. In other words, anything you want as long as you take your kid out of our school. They even had the nerve to ask if Darlene would start home schooling the next day.

For Bethany, hopefully, things are going to work out for the best. But what about the next blind child that comes along? The school officials side-stepped the issue of training. However, I did leave them with a complete set of our Kernel books and several copies of Future Reflections. I wonder if anyone will ever read them. I fear that the next family in Montecello who tries to enroll their disabled child in the local schools will find that attitudes have not changed much.

For now, Bethany is enjoying her home schooling and is a much happier child.

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