Future Reflections Winter/Spring 1997, Vol. 16 No. 1

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Ohio Mom Goes To D.C. With The NFB

[PICTURE] Crystal McClain and Macy at the 1996 NFB Convention.

Editor's Note: Crystal McClain is a member of the Ohio Parents Division and a hard-working Federationist. She has participated in the Washington Seminar for the past three years. After every seminar she would contact her local newspaper and tell the editor about her trip to Washington and about the legislative agenda of the National Federation of the Blind. Last year, in 1996, the paper decided to print a story about Crystal's trip to Washington and her family. Here's the story that appeared first in her local paper and later as a reprint in the Summer, 1996, issue of the Buckeye Bulletin, the Newsletter of the NFB of Ohio.

Local Mother Works to Provide Opportunities for Blind Daughter

by Martha O'Connor

A mother's desire to provide the best for her children has been a driving force behind Crystal McClain.

Twin daughters were born September 19, 1990, three months prematurely, to Mrs. McClain and her husband, Mark, of Bellefontaine. The girls joined another sister, Brianne, who was 8 years old at the time.

Macy weighed 1 pound, 13 ounces at birth, and Madison was 2 pounds, 2 ounces. The twins were hospitalized about three months at Children's Hospital in Dayton following their birth at Mary Rutan Hospital.

A complication developed when Macy was taken off oxygen after two months. She was discovered to have detached retinas that left her blind. Her twin sister suffered no complications.

Macy has had several surgeries to correct the problem but to no avail.

Mr. and Mrs. McClain spent a lot of time in surgery waiting rooms to ponder what was to come. On one occasion Mrs. McClain came across a magazine published by the National Federation of the Blind. It piqued her interest in finding out more about blindness and led her to become involved in the Ohio Division of the NFB.

"Even though I had never met a blind person, I had come to the conclusion that blind people were incapable of a lot of everyday things and unable to be independent," she said. "The NFB showed me firsthand how wrong I was."

She has participated in national conferences and often is called upon to lobby Congress for legislation that would benefit her daughter and all blind people.

Mrs. McClain said her association with the organization has enabled her to meet other parents of blind children. She has seen how blind people have succeeded in life as teachers, lawyers, and social workers and in many other professional careers.

She said she has come to know what to expect from Macy and has high expectations for her. She has devoted much effort in seeing that Macy has every opportunity to achieve them.

Assistance from the Early Intervention Program in Logan County came from the time Macy was slightly more than four months old. The agency provided many specialized services for Macy. A Braille teacher comes once a month to work with Macy, as does a teacher who instructs her in how to use a cane. An occupational therapist has also consulted with the family.

"The use of a cane by such a young child is something the NFB encourages, said Mrs. McClain. "We played games with Macy to get her to use it to find things," she said. "The cane is second nature to her now."

One of the hardest things for Macy to learn was to feed herself at the table, according to her mother. "Most children learn this by imitating others." Macy was taught to move her hand and fork through motion and verbal explanations of where the food was on the plate.

"We just have to figure out a way to teach Macy how to do things," said the determined mother, adding "There isn't anything we haven't found a way to do."

Since they are twins, Mrs. McClain prefers to dress the girls alike, but she also encourages their independence. Madison has been taught not to pick up after Macy because Macy needs to learn to do things for herself. They do play well together and support each other, according to their mother.

The girls have attended the preschool program at the Discovery Center for the past two years. They are in separate classes for most activities but are together for things such as physical education.

The structure of programs allows for children with special needs to interact with other children. According to Susan Holycross, program director, "The children learn from each other, and what they have learned about their differences they in turn pass that knowledge on to their parents."

Kelly McGowan, Macy's teacher, says that Macy's favorite things are tactile. She likes sensory things, those she can feel. Activities like playing in the sandbox or with the class's pet rabbit and finger painting seem to stimulate her, according to Ms. McGowan. The classroom is user-friendly for Macy, with lots of objects for touching and even labels in Braille so she can find things.

Macy and Madison attend the Discovery Center from 9 a.m. to 3:30 p.m. Ms. Holycross explained that the all-day-unit is designed to help prepare students for kindergarten.

Special therapists make scheduled visits throughout the week. One of them is an orientation and mobility specialist, who works with Macy to facilitate her learning how to get around.

Ms. Holycross notes that the Discovery Center is working in conjunction with Mrs. McClain and Bellefontaine City Schools to prepare the twins for enrollment at Pine Avenue School next year.

Macy visits Pine Avenue once a week to acclimate herself in the building. In turn, staff members from Pine Avenue come to the Discovery Center to observe and learn from Macy and her teachers.

Ms. Holycross said that current plans are for Macy to have a full-time aide at Pine Avenue. She anticipates this assistance for about two years. Because of Macy's ability to adapt so readily and her quickness in learning, it is believed that she will be able to get along without full-time assistance by then.

In the meantime Mrs. McClain continues to support legislative priorities of blind Americans. A trip in January to Washington, D.C., took her to the offices of Ohio's Senators and Congressmen to urge support for three specific issues.

The first is for a pending Senate bill that would raise the earning limits for senior citizens to $30,000 beginning in 2002, while limiting the earnings limit for blind people to $11,520. A concurrent House Resolution would re-establish the link between senior citizens and blind earning powers. She is urging the link be re-established so blind people could work to increase their earnings like senior citizens without being penalized. [Editor's Note: This is still a legislative issue the NFB is pursuing.]

The second issue involves the Copyright Act currently under review. The NFB is requesting the removal of a proposed 1-year time limit for reproducing written materials in Braille, thus allowing blind children immediate access to Braille books. Current regulations result in a month delay in books being transcribed into Braille. [Editor's Note: Please see the article, "New Copyright Law Big Breakthrough for the Blind" in this issue.]

The final item under consideration is a matter of policy, not legislation. The NFB is urging that the federal Individuals with Disabilities Education Act (IDEA) include wording that stipulates teaching Braille to blind children. Ohio and other states already include the wording in their Braille bills. [Editor's Note: This has just been accomplished. Please see the announcment at the end of this issue.]

Mrs. McClain truly believes that with the proper support blindness need not be a tragedy but a mere nuisance.

"Blind adults can and do hold jobs, graduate from college, have homes and families. I urge people not to hold on to your misconceptions about blindness but to instead wait and see what Macy is capable of."