Future Reflections Fall 1995, Vol. 14 No. 3

(back)(contents)(next)

PARENT POWER

[PICTURE] Parents of Blind Children of Long Island.
[PICTURE] Kerri and Matthew Regan
[PICTURE] Liz Regan
[PICTURE] Gary Posch, a blind hearing-impaired teen from the Pennsylvania Lehigh Valley parent chapter, checks his Braille agenda at the 1995 NFB Convention.
[PICTURE] Cindy Lynn Nabors is intrigued by the snake she gets to examine on the aquarium trip.
[PICTURE] Laura Biro goves 3-year-old Zach Ericson a cane lesson (left photo) while tutor Steve Handschu (right photo) horses around with Kyle Neddo during a break.

The following reports are from our Long Island, New York; Pennsylvania; Tennessee Valley; and Michigan affiliates of the National Organization of Parents of Blind Children. For more information about the NOPBC and the nearest state or regional chapter to you, contact:

Mrs. Barbara Cheadle, President
National Organization of
Parents of Blind Children
1800 Johnson Street
Baltimore, Maryland 21230
(410) 659-9314 or (410) 747-3472

National Organization of Parents of Blind Children

Goals and Objectives
1. To create a climate of opportunity for blind children in home and society.
2. To provide information and support to parents of blind children.
3. To facilitate the sharing of experiences and concerns among parents of blind children.
4. To develop and expand resources available to parents and their children.
5. To help parents of blind children gain perspective through partnership and contact with blind adults.
6. To function as an integral part of the National Federation of the Blind in its ongoing effort to eliminate discrimination and prejudice against the blind and to achieve for the blind security, equality, and opportunity.

REPORT FROM LONG ISLAND
by Liz Regan, President Long Island, New York Parents of Blind Children

Our daughter Kerri was just 2 pounds, 3 ounces at birth. She was diagnosed with retinopathy of prematurity. After many surgeries and procedures in Boston with the great Dr. Hirose we discovered Kerri would be blind. A lot of research and networking got us on the right path for early intervention. Our preschool had support groups for parents.

Like many of you I first discovered Future Reflections on my own over eight years ago. I found it to be a comforting friend. I anticipated each arrival and searched for new information in each article. I was amazed how parent groups got started; some were large, some small, but all had the same general purpose: to help parents learn to become the best parents they could be for their visually impaired baby or child.

In 1992, when Kerri was five, we prepared ourselves for kindergarten NOT by getting supplies ready, but by going to our first National Convention of the National Federation of the Blind in Charlotte, North Carolina. When we came back we felt it was time to start an NFB division of a parent group on Long Island.

We have been established since 1993. We started out with monthly meetings and now meet every couple of months. Kerri and I attended the NFB Dallas Convention in 1994, and our whole family, including brother Matthew, age 5, and Nana, too, attended Chicago this summer. (Grandparents are very important. Nana learned all about IEPs and daily living skills at the convention.) We take the new knowledge and skills we learn at the convention back to our group on Long Island.

Although we are a small group we have much active participation. Parents from our group go to Albany and Washington D.C. for legislative meetings and seminars; we sit in on meetings of the Commission for the Blind; we get involved in letter-writing campaigns; speak at conferences; and set up displays and hand-out literature at fairs. Our focus this year is to have our parents get involved as active members in their respective PTAs, specialized PTAs, and school board meetings. We feel this will give the needs of our kids more visibility and give us more leverage to see that these needs are met.

In stressful times I sit back and review where we started out and where we are today. As volunteers we can get discouraged and disappointed when we have a low turnout at a meeting, or the outcome of a meeting doesn't meet our expectations. But it all falls into perspective when we watch our children glow as they speak to others about our involvement in their lives, their futures, and the future of other blind people. My enthusiasm is renewed when I see the accomplishments of our children, the happiness on their faces, and those of their families.

For more information about the Long Island Parents of Blind Children contact Liz Regan (516) 735-0253.

REPORT FROM PENNSYLVANIA
by Michael Wolk, President Pennsylvania Parents of Blind Children

POBC/PA had significant progress during the past two years. After several years of inactivity, the state parent group was revitalized in November 1994 with the election of new officers at the NFB of PA State Convention in Pottsville. Pennsylvania has also established two local parent groups: the Lehigh Valley POBC (chartered May, 1994) and Erie POBC (chartered Spring 1995) under the leadership of Lisa Mattioli and Karen Giblin respectively. Each of the local chapters has had a steady increase in membership and the state organization offers membership-at-large.

POBC/PA notes the following list of important accomplishments:

(1) POBC leaders have assisted several parents by advocating for their children at IEP meetings.
(2) Five members attended the 1994 NFB Convention in Detroit. This figure doubled as ten members made the trip to the 1995 NFB Convention in Chicago. Lehigh Valley POBC received a grant which was used to sponsor a first-time family to attend the 1995 NFB Convention.
(3) A Parent Luncheon and Seminar was held at the 1994 NFB Of PA Convention in Pottsville. Barbara Cheadle, President of the National Organization of Parents of Blind Children (NOPBC), spoke at the luncheon regarding the benefits of the NOPBC. Several blind adults related their experiences as blind children and as adult job seekers. Lisa Mattioli relayed her viewpoint as a parent who has raised a successful blind child. The Braille literacy video AThat The Blind May Read@ was shown at the conclusion of the luncheon. The parent feedback regarding this seminar was so positive that an integrated agenda is being planned for the November 1995 NFB State Convention in Pittsburgh.
(4) A $500 grant was used to purchase 14 copies of AThat The Blind May Read@ which will be circulated throughout the state to Intermediate Units, school districts, and libraries.
(5) Erie POBC has developed a tutorial program for the benefit of classroom teachers and aides who have no experience educating blind and visually impaired students.
(6) Lehigh Valley POBC obtained funds from a local Lions Club to provide extended school-year Braille instruction for four children. Eighteen classes were taught over a six-week period by a graduate of Kutztown University.
(7) POBC/PA generated 132 letters during the 1995 Braille literacy letter-writing campaign.

Editor's Note: As this goes to press the NFB and POBC of Pennsylvania just completed an outstanding state convention in Pittsburg. Parent attendance more than tripled from 1994, and the atmosphere was charged with enthusiasm as plans were laid for a year full of growth, progress, and new programs.

VISION FOR THE FUTURE:

The POBC\PA set forth a new Vision for the Future:
-The POBC/PA will be a strong, active, vital, resourceful, recognized, respected, and influential advocacy organization for blind and visually impaired children in the state of Pennsylvania.
-POBC/PA will represent blind and visually impaired children and their parents throughout the entire state of Pennsylvania with membership in every county and major city.
-POBC/PA will be active and successful in state and federal legislation including the passage of a state Braille Literacy Bill.
-POBC/PA will develop positive interdependent relationships with Pennsylvania state service providers and educators and favorably influence the provision of necessary services, education, and assistive technology.
-POBC/PA will be fully networked among Pennsylvania parents and children, the NOPBC, the NFB of Pennsylvania, and the NFB in mutually cooperative, resourceful, and successful relationships.

MISSION STATEMENT

POBC/PA adopted the following Mission Statement:

The POBC/PA is a statewide parent advocacy organization that creates a lifetime of security, equality, independence, and opportunity for Pennsylvania blind and visually impaired children and their families.

For more information about the Pennsylvania Parents of Blind Children please contact Michael Wolk (610) 398-3533.

REPORT FROM THE TENNESSEE VALLEY
Pat Jones, President Tennessee Valley Parents of Blind Children

Last Spring I took the initiative to get some parents together in our area to talk about our common problems. The response and turnout was so great that Barbara Cheadle, President of the National Organization of Parents of Blind Children, made last minute plans to fly out and help us organize as an affiliate of the NOPBC and the NFB of Tennessee. (I have been to state and national NFB conventions, and NFB members have supported me all the way in advocating for the twin granddaughters which my husband, Jerry, and I are raising. There was no question, then, that this would be an NFB group.) About 30 people (parents, kids, and Federation members) attended our organizing meeting on Saturday, June 3, 1995.

The first activity we organized was a trip to the aquarium here in Chattanooga. They did a wonderful presentation for our children. We saw the skull of a shark, a brown rat snake, a boa constrictor, a box turtle, a neon-green tree frog, and an alligator. The instructor patiently took his time with everyone who wanted to see the displays hands-on. I can't put into words how excited I was about how well this was done.

After the hands-on exhibit, we were free to tour the aquarium or spend time with the exhibits outside the aquarium. My twins' mobility teacher was there, and she did a great job of pointing out and explaining the many interesting exhibits.

We then all met and went to a nearby park for our picnic. (By the way, it was 98 degrees that day.) We had 41 people at our picnic, including members of the local NFB chapter who have been supportive advocates for our children. The children all played on the playground before and after our meal of barbecue, chips, baked beans, and munchkins. A local barbecue place furnished the first three items, Dunkin' Donuts furnished the munchkins, and Golden Gallon furnished our drinks.

We took pictures at the picnic and at the aquarium for our scrapbook. Everyone said they had a great time. One parent said she had never felt as good about being with a group as much as she did with our Tennessee Valley POBC.

This fall we are planning some educational/IEP support meetings for individual parents who want advice and guidance about their childrens' programs. We also plan to have a hay ride and Christmas party for the children. I think we are off to a great start here. By the way, we call ourselves the Tennessee Valley POBC because we pull from an area which includes parents who live in nearby Georgia.

For more information about the Tennessee Valley Parents of Blind Children please contact Pat Jones (615) 499-6017.

REPORT FROM MICHIGAN
by Dawn Neddo, President Michigan Parents of Blind Children

For the last year and a half the NFB and the Michigan Parents of Blind Children have offered a Saturday tutoring program for blind children. The program is held the first and third Saturdays of the month from October to June in a public junior high school in the metro Detroit area. NFB members donate their time to work with blind children of all ages on a variety of skills.

We have had children from ages 15 months to 16 years. Some come from as far away as 50 miles. We get partially sighted children whose school districts won't teach them Braille or cane use. We have totally blind children who do not get sufficient Braille instruction from their schools. In our tutoring program they learn from someone who reads Braille tactually the way they do.

In addition to Braille each session offers orientation and mobility lessons from a blind instructor. Other subjects have included math, abacus, tactile maps, social skills, self-esteem, and Braille 'n Speak use. We add any topics that parents feel their children need.

Allen Harris, our Michigan affiliate president, Joy Harris, our Detroit chapter president, and Steve Handschu our I.E.P.C. advocate and a member of the Michigan Commission for the Blind, are the leaders of the teaching team. Others who have taught are Donna and Larry Posont, Lee and Lyle Thume, Laura and Donna Biro, Sharon Kingsbury, and Sue Drapinski.

During the sessions children have an excellent opportunity to interact with blind adults and other blind children. Friendships and role model relationships are developed which are later reinforced when the children and adults see each other again at NFB conventions and day camps.

During the tutoring sessions we hold a parents meeting where we discuss the many issues that are important to our children's future. We support each other and share ideas and common frustrations. Having our meeting during the tutoring time has worked well. It gives us time to get to know our children's blind role models and learn from them. We also use the time to plan for NFB conventions, to organize fund raising, to coordinate strategies for promoting Braille literacy, and to plan other activities.

Our last session is a pot-luck picnic with our tutors and the families that have participated in the program. We meet in a nearby park and our NFB state president, Allen Harris, cooks hot dogs for all. The children play and make plans for seeing each other at our Michigan NFB day camp, which is held in July. The parents and tutors and their families enjoy each others company and everyone has a great time.

A tutoring program is a lot of work and requires a big commitment from our adult blind NFB members. Without them there would be no tutoring program. But seeing our childrens' progress each year makes us realize that the time and commitment is definitely worth it.

Another worthwhile program which requires time and commitment is our July NFB day camp. We just completed our eighth day camp program this summer. We have made changes and refinements over the years, and we believe this year was our best.

We invite blind children and their families to join NFB chapter members on five separate field trips. This summer we went on a train ride, explored a fire engine, went rollerblading, spent a day at a wave pool and water slide, went to the zoo, toured a farm, and went to the beach. Each day we had a picnic lunch.

During each of our field trips the children observed blind adults barbecuing, rollerblading, and swimming. The children quickly learned that blind adults do all the things other adults do. But the learning did not stop with our blind kids and their families.

For example, the train trip guide asked our trip coordinator what to do with the group. She said that when she gives the narrated tour she makes such comments as, ALook to your left and you'll seeÿ@ She then asked what she should say instead, so that she didn't hurt anyone's feelings. A brief discussion about the NFB and our philosophy reassured the guide that blind people use look and see just like everyone else, and that the same narrative she used for others would be fine for our group, too.

When the day camp ended we were all a little bit stronger in our common belief that blind children are not different from other children.

For more information about the Michigan Parents of Blind Children please contact Dawn Neddo (810) 363-1956.