Challenges for Survivors

Special Education for Survivors of Shaken Baby Syndrome

Bonnie Armstrong, Parent Representative

After a child has suffered a traumatic brain injury (TBI) and other injuries as a result of shaken baby syndrome (SBS), families have many concerns. One major concern is the education of the child. Children diagnosed with SBS often have numerous disabilities that must be addressed in the educational setting.

Traumatic Brain Injury (TBI) can be thought of as a series of injuries, starting with the initial impact and then continuing as the brain bounces against the rough surface inside the skull, sometimes twisting, and then swelling to produce further damage to surrounding tissue. Brain injuries can affect learning, memory cognition, motor functioning, bodily functions, perceptual systems, speech, receptive language and so on. 1

When young children are shaken, the injury occurs to a brain that is not completely developed. Often, the effects do not show up until later when the educational demands on the brain increase. Brain injuries are unique to the individual and there is no one educational plan that will apply to all SBS survivors.

Developmental Disabilities are severe, chronic disabilities, mental and/or physical, that occur before the age of 22. Developmental disabilities usually continue indefinitely and limit a person's participation in three or more of the following major life activities: self-care, mobility, language, learning, self-direction, independent living and economic self-sufficiency. 2

Education for Children with Disabilities

Two important laws for parents to understand include the American with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). These laws guarantee that eligible children and youth with disabilities must receive a free and appropriate education.

Contact your local school district and request an assessment for your child. This refers to the ongoing process of gathering and using information about how a child is developing and determining what kind of help he might need. 3 The evaluation process should include:

  • A multidisciplinary team of professionals
  • Observations by professionals who have worked with your child
  • Your child's medical history, when it is relevant to his performance in school
  • Information and observations from the family


After eligibility for special education services is determined, an Individualized Education Plan (IEP) is developed at an Admission, Review, and Dismissal (ARD) committee meeting by the parents and other professionals. Your child's IEP must be based on his individual needs, not on the services that other children receive. The IEP is the tool for describing what is needed and how services will be provided. Some schools may be unfamiliar with developing functional educational plans for students with brain injuries so parents often must be diligent in providing information and advocacy on behalf of their child. 4 It is important for parents to attend the IEP meeting and be prepared.

Parents must have a thorough understanding of IDEA. A copy can be obtained by contacting the National Information Center for Children and Youth with Disabilities (NICHCY) at 1-800-695-0285 or at www.nichcy.org. Further, you should review the assessment data before the IEP meeting and prepare written questions or information about your child. Finally, invite others to attend the meeting with you. Parents often feel overwhelmed and alone when confronted with a room full of professionals discussing their child in a clinicalmanner.5

At the IEP meeting the committee will meet and review your child's current assessment data, decide on needed services, and write an IEP. The committee works as a team to develop an appropriate plan for the child and it is very important for parents to realize that they are a vital part of this team.

A publication developed by the Coordinating Council for Handicapped Children (Chicago, IL) lists the following information to be included in a child's IEP:

  • A statement of your child's present educational performance level.
  • Annual goals for your child and short-term instructional objectives.
  • Specific educational services to be provided.
  • Specific related/supportive services to be provided based on needs.
  • The extent, if any, of your child's participation in the regular education program.
  • The extent, if any, of your child's participation in the summer program.
  • Appropriate criteria, evaluation procedures, and the schedules for determining annually (at least), whether instructional objectives have been achieved.
  • Additional services such as transportation and special aids must also be listed in the IEP and provided at no cost to the parent.


If you disagree with the IEP that has been developed, you can state on the IEP that you do not agree and request another meeting. At the next IEP meeting, if you are still not in agreement with the committee, you may request a Due Process Hearing and/or mediation, file a written complaint with the Office of Civil Rights, and/or contact the Department of Education, Office of Special Education and RehabilitativeServices.6 All parents or guardians have the right to participate in and approve the IEP developed for their child.

You can support your child's educational development by maintaining good communication with the professionals who work with your child and by being actively involved in your child's education.

Resources for More Information

  • To receive a free tip card on Special Education IEP Checklist for a Student With a Brain Injury, contact L&A Publishing/Training, (603-569-3826) mlashnh@woldpath.net or visit their web site at lapublishing.com
  • The Shaken Baby Alliance P.O. Box 150734 Ft. Worth, TX 76108 (817) 279-1166 info@shakebaby.com
  • National Council on Disability (202) 272-2004 ncd.gov

References

1. Bodel. Brain Injury Prevention. Be Headsmart. Violence and Brain Injury Inst. 1998:34.
2. Texas Planning Council for Developmental Disabilities, 1998
3. NICHCY, 1994
4. DePompei, Blosser, Savage, Lash, 1998
5. Coordinating Council for Handicapped Children, (Chicago, IL)
6. Coordinating Council for Handicapped Children, (Chicago, IL)