Working With Schools


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Velo-Cardio-Facial Syndrome
Educational Foundation, Inc.

Working With Schools to Help Your
Child With VCFS

Donna Landsman, M.S.


Managing the educational maze can be one of
the most frustrating aspects of raising a child with special needs. In the U.S.,
federal and state laws regulate what school districts are obligated to do, even
though shrinking school budgets make it difficult to provide students with
maximal levels of service. Schools will often opt for the least expensive
alternative, even though it may not be the “best” program. However, parents who
are educated regarding the unique needs of children with VCFS, the laws which
protect them, and the educational programs which are effective can succeed in
increasing the assistance given their child. Children with VCFS can learn and
improve their school performance, but parents must be informed advocates for
their child’s right to an appropriate education.

When parents first learn of the diagnosis of VCFS in their child, they may
struggle with the notion of informing the school. They may feel that their child
will be stigmatized or even be the target of some form of discrimination. They
might also fear the loss of friendships, the effects of poor achievement, and
low self-esteem. However, withholding the information may prevent the child from
receiving the services mandated by law, and the school is relieved from the
responsibility to provide a “tailored” education or special accommodations.

Most children with VCFS will qualify for special education services because
of their speech and language impairments. Many will also qualify under the
“Other Health Impaired” category because of hearing loss, heart anomalies,
hypotonia, attention deficit disorder, and other physical and behavioral
problems. Once a student has qualified for special education services, schools
are required to make modifications, provide therapy, assistive technology, and
accommodations to help the student to succeed. In addition, the special
education teachers will provide a bridge for the parents to work with the
classroom teacher to modify or clarify assignments, provide special materials
and help with the transition to a work environment or a higher education
setting. Most teachers will try their best to understand VCFS, if provided
information about it, therefore providing a nurturing environment for providing
assistance.

There are many accommodations which may be useful for children with VCFS
which can be included in their Individual Education Program (IEP), including:
 

  1. A quiet work environment.

  2. An assignment notebook to keep track of work.

  3. Instruction in keyboarding and access to a
    computer for written work.

  4. Providing books on tape, including textbooks
    in science and social studies.

  5. Test modifications (untimed, tests on tape or
    read to the student, clarifying directions).

  6. Preferential seating.

  7. Study guides for tests.

  8. Training and helpwith problem solving in
    social settings.

  9. Direct instruction in the academic areas with an emphasis on incremental
    skill building and massed practice.

Many children with VCFS can be successful in a regular classroom with
modifications and assistance. Educating all of your child’s teachers (including
art, music, physical education, etc.) about your child’s needs will help achieve
a school experience that is positive and productive. While schools can offer
help, parents must play a primary role in keeping the child “on track.” Some
suggestions follow:

  1. Be positive, but firm in expectations
    (completion of work, making the best effort)

  2. Study for tests with your child in short
    periods over several days.

  3. Arrange regular contact with teachers.

  4. Check daily with your child about assignments,
    due dates, and class requirements.

  5. Help your child gather materials and
    re-explain concepts.

  6. Enroll your child in a supplemental
    educational program to reinforce

  7. Be realistic about the limitations of children
    with VCFS and reward their best effort. Explain difficulties within the
    context of a medical problem, not as a lack of ability.

  8. Trust your instincts. You are an expert on your child and understand
    his/her needs. Do not be intimidated. Do not feel that you are forced to
    accept placements that you feel are wrong. Seek alternatives.

We can all learn from each other’s experiences. Sharing our successes and
failures will help us understand VCFS and assist in developing strategies to
help our children.

Donna Landsman is a teacher in Madison, Wisconsin, and the parent of a child
with VCFS.

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Copyright © 2004 Velo-Cardio-Facial Syndrome Educational Foundation, Inc.