Learning and Education

If you know of resources, please email sbaa@sbaa.org.

Parents

  • The earlier that Early Intervention services begin, the better chance for making significant differences.  A specialist will work with you and your child to find ways to stimulate your child and help him or her achieve specific goals, determined by both the specialist(s) and you. Educational and therapy services vary from state to state. Public schools are required by a federal law referred to as the Individuals with Disabilities Education Act (IDEA) to provide a free appropriate education for your child.
  • If your child has minimal supplementary educational needs, he or she may not qualify for special educational services. If that is the case, then a simple plan referred to as a 504, can be drawn up to address cathing and other medical needs.
  • If your child qualifies for special education, the services he or she needs will be addressed in a more formal document called an Individualized Education Program (IEP).
  • Many children with Spina Bifida and hydrocephalus have learning challenges. Areas where children typically have problems include:
    • Organization
    • Language: poor comprehension, sequencing problems, and trouble understanding directions
    • Attention and memory
    • Handwriting
    • Mathematics
    • Solving problems and making decisions
  • Numerous accommodations, strategies, and sometimes medications can help your child cope with these challenges. Help your child find and develop a skill he or she can be proud of.
    • Missing school for surgeries may be a big problem for a child who is striving for good grades. School districts are required to provide home-based tutors for special education students who are unable to attend school for extended periods. Contact your local school to make arrangements as soon as possible.
    • Many teachers are not familiar with latex allergies and the way to avoid exposure. Use the Spina Bifida Association’s latex fact sheet to help educate them.

Recommended Reading for Parents

Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board

Social Development and the Person with Spina Bifida, edited by Donald Lollar, EdD

Bridging the Gap: Raising a Child with Nonverbal Learning Disorder, by Rondalyn Varney Whitney

The Complete IEP Guide: How to Advocate for Your Special Ed Child, by Lawrence M. Siegel

It's So Much Work to Be Your Friend... Helping the Learning Disabled Child Find Social Success, by Richard Lavoie

Negotiating the Special Education Maze, by Deidre Hayden et. Al.

The New Language of Toys: Teaching Communication Skills to Children with Special Needs, by Sue, Ph.D. Schwartz

Section 504 Plan Template, Spina Bifida Association

Steps to Independence: Teaching Everyday Skills to Children with Special Needs, by Bruce L. Baker and Alan J. Brightman


Teens

  • Start planning and setting goals for education and work beyond high school.
  • Between ages 14 and 16, you should begin attending your own IEP meeting. At this time, your transition plan should include vocational/academic goals.
  • If you need a special education program, you have the option of staying in the school setting up to age 22. This allows for extra time for attendance in vocational programs at the school's expense. You can still participate in the graduation ceremony with your classmates, but will not officially receive a diploma at that time.
  • Now is the time to optimize your self-care skills, including bathing, dressing, and getting a haircut. It is very important for you to:
    • Be a good and reliable worker.
    • Have excellent hygiene and social continence.
    • Have good social skills.
  • Once you leave school, state vocational rehabilitation programs may be able to support you with job training, advanced education, placement, transportation, and special equipment and aids to help achieve eventual employment. Employment options for individuals with disabilities range from sheltered employment to regular competitive employment.

Recommended Reading for Teens

Health Guide for Parents of Children Living with Spina Bifida Edited by the SBA Editorial Review Board

Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton


Adults

  • Everybody learns differently. Some people learn by listening while others learn by seeing or doing. Most people with Spina Bifida have strong verbal skills but may have difficulty in other areas.
  • You may experience some or all of the following learning challenges. These may have been labeled as Nonverbal Learning Disabilities (NLDs).
    • Memory
    • Understanding
    • Attention
    • Organization
    • Sequencing
    • Decision Making and Problem Solving
  • Use a calendar, Palm Pilot, computer, or tape recorder to remember daily routines.
  • Make lists of tasks to be done.
  • Use a calculator to do math.
  • Use a watch with alarm to remind you when to take medications, catheterize or exercise.
  • Make a mental image of new information.
  • It's okay to ask a trusted friend or family member for help in making decisions.
  • Recommended Reading for Adults

    Health Guide for Parents of Children Living with Spina Bifida Edited by the SBA Editorial Review Board Spina Bifida


    Resources

    Organizations that Can Help Parents

    AVKO Educational Research Foundation
    3084 Willard Rd
    Birch Run, MI 48415
    810-686-9283
    avkoemail@aol.com
    www.avko.org

    National Association of Colleges and Employers
    62 Highland Ave
    Bethlehem, PA 18017
    610-868-1421 / 800-544-5272
    www.naceweb.org

    Alliance for Parental Involvement in Education
    PO Box 59
    East Chatham, NY 12060
    518-392-6900
    allpie@taconic.net
    www.croton.com/allpie

    National Association of Private Special Education Centers
    1522 K St NW, Suite 1032
    Washington, DC 20005
    202-408-3338
    napsec@aol.com
    www.napsec.org

    Alternative Work Concepts
    PO Box 11452
    Eugene, OR 97440
    541-345-3043
    awc@efn.com
    www.alternativeworkconcepts.com

    National Council on Rehabilitation Education
    2012 W Norwood Drive
    Carbondale, IL 62901
    618-549-3267
    www.rehabeducators.org

    American School Counselor Association
    American Counseling Association
    1101 King Street, Suite 625
    Alexandria, VA 22314
    703-683-2722 / 800-306-4722
    asca@schoolcounselor.org
    www.schoolcounselor.org

    National Education Association of the United States
    1201 16th Street NW
    Washington, DC 20036
    202-833-4000
    ww.nea.org

    Association on Higher Education and Disability
    107 Commerce Center Drive, Suite 204
    Huntersville, NC 28078
    704-947-7779 / 617-287-3882
    ahead@ahead.org
    www.ahead.org

    National Society for Experiential Education
    19 Mantua Road
    Mount Royal, NJ 8061
    856-423-3427
    www.nsee.org

    CEC-Division for Early Childhood
    Council for Exceptional Children
    1110 N Glebe Road
    Suite 300
    Arlington, VA 22201
    888-232-7733
    service@cec.sped.org
    www.cec.sped.org

    President's Committee for People with Intellectual Disabilities
    Administration for Children and Families
    370 L Enfant Promenade SW
    Washington, DC 20447
    202-619-0634
    www.acf.hhs.gov/programs/pcpid

    Council for Exceptional Children
    1110 N Glebe Road, Suite 300
    Arlington, VA 22201
    703-245-0600 / 888-232-7733
    president@cec.sped.org
    www.cec.sped.org

    SSD (Services for Students with Disabilities)
    College Board
    45 Columbus Avenue
    New York, NY 10023
    212-713-8000
    www.collegeboard.com


    Organizations that Can Help Teens

    Alternative Work Concepts
    PO Box 11452
    Eugene, OR 97440
    541-345-3043
    awc@efn.com
    www.alternativeworkconcepts.com

    National Association of Private Special Education Centers
    1522 K St NW
    Suite 1032
    Washington, DC 20005
    202-408-3338
    napsec@aol.com
    www.napsec.org

    National Association of Colleges and Employers
    62 Highland Ave
    Bethlehem, PA 18017
    610-868-1421
    800-544-5272
    www.naceweb.org

    SSD (Services for Students with Disabilities)
    College Board
    45 Columbus Avenue
    New York, NY 10023
    212-713-8000
    www.collegeboard.com

    SBA Scholarship Program


    Organizations that Can Help Adults

    Alternative Work Concepts
    PO Box 11452
    Eugene, OR 97440
    541-345-3043
    awc@efn.com
    www.alternativeworkconcepts.com

    Job Accomodation Network
    Office of Disability and Employment Policy
    PO Box 6080
    Morgantown, WV 26506
    800-232-9675 / 800-526-7234
    jan@jan.wvu.edu
    www.jan.wvu.edu

    American Council for Headache Education (ACHE)
    19 Mantua Road
    Mount Royal, NJ 8061
    856-423-0258
    achehq@talley.com
    www.achenet.org

    National Association of Colleges and Employers
    62 Highland Ave
    Bethlehem, PA 18017
    610-868-1421 / 800-544-5272
    www.naceweb.org

    Association on Higher Education and Disability
    107 Commerce Center Drive, Suite 204
    Huntersville, NC 28078
    704-947-7779 / 617-287-3882
    ahead@ahead.org
    www.ahead.org

    National Center for Homeopathy
    801 N Fairfax Street, Suite 306
    Alexandria, VA 22314
    703-548-7790
    info@homeopathic.org
    www.nationalcenterforhomeopathy.org

    CARF International (Comission on Accredittion of Rehabilitation Facilities)
    4891 E Grant Road
    Tucson, AZ 85712
    520-325-1044 / 888-281-6531
    info@carf.org
    www.carf.org

    National Center for The Study of Adult Learning and Literacy/World Education
    44 Farnsworth Street
    Boston, MA 02210
    617- 482-9485
    ncsall@worlded.org

    Hire Disability Solutions
    327 East Ridgewood Avenue
    Paramus, New Jersey 07652
    info@hireds.com
    1-800-238-5373
    www.hireds.com

    President's Committee for People with Intellectual Disabilities
    Administration for Children and Families
    370 L Enfant Promenade SW
    Washington, DC 20447
    202-619-0634
    www.acf.hhs.gov/programs/pcpid

    SBA Scholarship Program

    Please Note: These resources and information are reviewed periodically. They do not represent all of the resources currently available on a topic. If any updates are needed or if you would like to recommend a resource, please email the Resource Center at sbaa@sbaa.org.