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

  • Affordable Colleges Online: College Affordability for Students with Disabilities
  • 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

Organizations that Can Help

AVKO Educational Research Foundation

3084 Willard Rd. Birch Run, MI 48415

(810)-686-9238

Alliance for Parental Involvement in Education

PO Box 59 East Chatham, NY 12060

(518)-392-6900

allpie@taconic.net

www.croton.com/allpie

Alternative Work Concepts

PO Box 11452 East Eugene, OR 97440

(541)-345-3043

awc@efn.com

http://alternativeworkconcepts.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

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

CEC Division for Early ChildhoodCouncil for Exceptional Children

1110 N Glebe Road Suite 300 Arlington, VA 22201

888-232-7733

service@cec.sped.org

www.cec.sped.org

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

National Association of Colleges and Employers

62 Highland Ave Bethlehem, PA 18017

610-868-1421 / 800-544-5272

www.naceweb.org

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 Council on Rehabilitation Education

2012 W Norwood Drive Carbondale, IL 62901

618-549-3267

http://ncre.org/

National Education Association of the United States

1201 16th Street NW Washington, DC 20036

202-833-4000

http://www.nea.org/

National Society for Experiential Education

19 Mantua Road Mount Royal, NJ 8061

856-423-3427

www.nsee.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

http://www.acl.gov/Programs/AIDD/Programs/PCPID/index.aspx

SSD (Services for Students with Disabilities) College Board

45 Columbus Avenue New York, NY 10023

212-713-8000

www.collegeboard.com

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

  • 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

Organizations that can help

National Association of Private Special Education Centers

1522 K St NWSuite 1032Washington, 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

Alternative Work Concepts

PO Box 11452 Eugene, OR 97440

541-345-3043

awc@efn.com

http://alternativeworkconcepts.org/

SSD (Services for Students with Disabilities)College Board

45 Columbus Avenue New York, NY 10023

212-713-8000

www.collegeboard.com

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.

Organizations that Can Help

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

American Council for Headache Education (ACHE)

19 Mantua Road Mount Royal, NJ 8061

856-423-0258

achehq@talley.com

www.achenet.org

Alternative Work Concepts

PO Box 11452 Eugene, OR 97440

541-345-3043

awc@efn.com

http://alternativeworkconcepts.org/

CARF International (Comission on Accredittion of Rehabilitation Facilities)

891 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

Farnsworth Street Boston, MA 02210

617- 482-9485

ncsall@worlded.org

National Center for Homeopathy

801 N Fairfax Street, Suite 306 Alexandria, VA 22314

703-548-7790

info@homeopathic.org

www.nationalcenterforhomeopathy.org

National Association of Colleges and Employers

62 Highland Ave Bethlehem, PA 18017

610-868-1421 / 800-544-5272

www.naceweb.org

 

www.jan.wvu.edu

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

Hire Disability Solutions

327 East Ridgewood Avenue Paramus, New Jersey 07652

info@hireds.com

1-800-238-5373

www.hireds.com

National Center for The Study of Adult Learning and Literacy/World Education

370 L Enfant Promenade SW Washington, DC 20447202-619-0634

http://www.acl.gov/Programs/AIDD/Programs/PCPID/index.aspx