Date: Fri 16-Jul-1999

Publication: Bee

Author: JAN

Quick Words:

Gerri-Snow-Parents-blind

Full Text:

Gathering Watchful Parents As Advocates For The Blind

(with photo)

BY JAN HOWARD

It is obvious how much Gerri Snow loves her part time job. Her enthusiasm to

offer new programs and resources as executive director of Connecticut Parents'

Association for the Blind and Visually Impaired (CPABVI) comes straight from

the heart.

She knows first hand what these parents are facing because she and her

husband, Arnie, have experienced the same concerns for 12 years.

Her son Alex, 12, has been blind since birth. Now a seventh grader, Alex is

doing grade-level work at Newtown Middle School and participating in programs,

such as water skiing, that Mrs Snow never could have envisioned at the time of

his birth. Mr and Mrs Snow, who have lived in Newtown for 17 years, have

another son, Chris, 9.

The goal of the statewide organization is to meet the needs of parents of

blind and visually impaired children by serving as an advocate, providing

support groups and programs, and sharing information and resources.

Mrs Snow has run CPABVI from her Newtown home for the past three years. The

office was previously located in donated quarters in Andover. When the

previous director resigned, Mrs Snow, then a member of the board of directors,

replaced her. She has a bachelor's degree in business administration and has

completed workshops and seminars on issues related to blind and visually

impaired children and their parents.

She is currently pursuing plans to develop a camp program next summer with

Joel Ziesler, the president and coach of the Lake Zoar Water Ski Club for the

Disabled. "I'm hoping it will be a long-time relationship," she said.

Mrs Snow is researching a grant to help fund the program.

She said it was a wonderful feeling to watch her son learn to water ski at a

recent clinic and wants to see that opportunity offered to other children. "Do

you know how many kids I can bring here?" she exclaimed.

Having her office in her home keeps overhead costs low, Mrs Snow said, "so

most of our proceeds can go directly to programs."

In addition, she is more available to receive phone calls from concerned

parents beyond the normal work-day hours.

Regional Groups

The parents association was founded in 1978 and incorporated as a non-profit

group in 1982. Its 13-member board of directors and membership of more than

500 families statewide is primarily made up of parents of blind or visually

impaired children as well as concerned professionals.

The state organization is divided into five regional groups. When new parents

are referred to the association, they want to make contact with other parents

whose child may be the same age or have the same condition as their child, Mrs

Snow said.

Having parents' groups on a regional basis is more personal and makes it

easier to coordinate visits between families, classes in braille, and other

programs.

CPABVI is affiliated with the National Association of Parents of the Blind and

Visually Impaired, which is headquartered in Watertown, Mass.

Because each state has different services available to residents, each state

organization "works pretty autonomously," Mrs Snow said. Referrals may come

from the national association, which also issues a newsletter that can offer

sources for grants and workshops. It also tracks national legislation.

Mrs Snow is responsible for day-to-day operations of the state association,

answering the phone for referrals, and preparing a quarterly newsletter that

is sent to all member families as well as researching and writing grant

requests. She also serves as an advocate for parents, particularly if they

need representation with school officials for a child's placement in an

Individualized Education Program (IEP) or during a Planning and Placement Team

(PPT) meeting.

"We go in with a team approach," Mrs Snow said. "I sit in on the meetings and

give information when I can."

In special cases, Mrs Snow provides parents with referrals, such as the names

of attorneys who specialize in representing parents of special education

students.

She said Connecticut is serviced by the Board of Education Services for the

Blind, which provides an education consultant or an itinerant teacher to

oversee the school program of a blind or visually impaired student. The state

agency also is one of the primary ways the association receives referrals. It

conducts an intake interview for parents of all birth to pre-school children,

who are given a copy of the association's brochure.

The federal government calls for children to be mainstreamed if they are able

to do so. The school system must provide an adequate education for those

children, she said, and each child's case is different. "The schools have to

provide a program suited to that child. It gets very complicated."

Reaching Into Homes

Mrs Snow is changing the focus of the Connecticut Parents' Association "from

trying to get parents to meetings to us trying to go to their homes or

communities," she said. The association is also trying to fund programs for

children in their own communities.

One of the association's programs is maintenance of a descriptive video

lending library, which makes current and classic videos, produced with

narration, available free of cost to blind and visually impaired children. The

program, funded through a grant, "is an extremely successful program that

comes to their homes," Mrs Snow said. The videos are sent with a return

mailer.

"We try to come up with programs to take some stress off parents," she said,

such as respite care, support groups, and camp scholarships. This year, $7,000

will be spent for summer camp scholarships.

"The programs are very diverse," Mrs Snow said.

Mrs Snow said the number of children diagnosed as blind or visually impaired

is not decreasing. "I'd love to be able to say in five years there won't be a

need for the Connecticut Parents' Association, but I have seen more than I

care to see."

It is the parent support the organization provides that often makes the

difference when a child is newly diagnosed as blind or visually impaired, she

said.

"It is amazing what's available for children," she said. "However, when your

child is first diagnosed, you think `How are we going to do this?' A parent

has to go through a grieving period when their child is diagnosed. You're

overwhelmed. You never feel you're going to do enough for your child. It

changes your life."

In addition to the ongoing support groups, Mrs Snow has set up a pilot support

group with a professional facilitator to address at-risk families. "It is

flexible enough to have parents come with any issues they might have," she

said, which might include sibling situations or strains on their marriage.

"The group counseling is free. All the parents have to do is get there. If it

is successful, we will work with others in other areas."

Mrs Snow knows how important it is to have support from other parents. When

she first learned that Alex was blind, she was given the name of a couple in

Niantic whose child had a similar problem.

"We're still friends," she said. "I can't tell you how many families we've had

here at our house.

"A parent coming here with their toddler and seeing my son ride out of the

driveway on his bike says more than I can say in a half hour of talking," Mrs

Snow said.

"Parents of blind or visually impaired children have the same goals as

everyone else. When parents get this far, we find out what their needs are and

how we can help them. It's a long road ahead but there is light at the end of

the tunnel."

For more information about Connecticut Parents' Association for the Blind and

Visually Impaired, call 800/529-3223 or 203/270-6833.