At School | Living With LGS

For many children with Lennox-Gastaut syndrome (LGS), diagnosis comes around the same time that they are expected to start attending school. As a parent or caregiver, you will have to understand the physical and emotional needs and limitations of your child, and know what is available to you so your child can receive the best education possible.

Developmental delays
As heartbreaking as it is to see a child in the physical throes of a seizure, many parents report that their worst fear is seeing their child regress developmentally.

Learn what is available to you so your child can receive the best education possible.

Most children with LGS experience some degree of:

Impaired intellectual functioning
Impaired information processing
Delayed development¹

Some children are developmentally normal when LGS begins, but then lose skills. This loss is sometimes dramatic and associated with uncontrolled seizures. By age 6, most children with this syndrome have some degree of mental retardation.²

Some individuals do not show obvious intellectual impairment, especially if the seizures begin later in childhood and are not too frequent or severe.

Education
Every child with LGS is different and will have different needs. There are many options and services available to ensure that children with special needs still receive an education. Your child may be evaluated by a team of professionals that may include his or her teachers, a psychologist, a speech and language specialist, and an occupational therapist.³ You can also seek out non-school specialists,³ such as a neuropsychologist, to evaluate your child’s intellectual functioning and advise on a plan for education.⁴

As a result of these evaluations, an individualized education plan (IEP) should be developed.⁵ The IEP will include:

An assessment of your child’s current academic abilities and performance⁶
A description of the services to be provided for your child⁶
Annual goals, and a description of how they will be measured⁶
A schedule for progress reports to be prepared⁶

By law, public schools must provide services to ensure children with a disability have a fair chance at an education.⁵ To learn more about the Individuals with Disabilities Education Act (IDEA), visit http://idea.ed.gov.

There will be a lot of people involved in assessing and providing an education for your child. Remember that you also play a vital role in this process. You are the best advocate for your child. Learn more about your child’s rights—both nationwide and within your state.⁵ Finally, stay a part of the process. Open communication between you, the teachers, other school staff, your healthcare team, and even the other students can help avoid confusion and give your child the best education possible.⁵

As your child gets older, his or her needs at school may change. You may find that your child’s seizures and behavior change as well.

Learn more: Beyond childhood »

References:
^1.	NINDS Lennox-Gastaut information page. National Institute of Neurological Disorders and Stroke Web site. http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm Updated June 15, 2010. Accessed September 27, 2010.
^2.	Epilepsy syndromes. Epilepsy Foundation Web site. http://www.epilepsyfoundation.org/about/types/syndromes/lg.cfm. Accessed September 27, 2010.
^3.	What is an individualized education plan? Ventura County Office of Education Web site. http://www.vcoe.org/spe/AboutSpecialEducation/IEP.aspx. Accessed September 27, 2010.
^4.	Glauser TA, Morita DA, Stannard KM. Lennox-Gastaut syndrome. eMedicine Web site. http://emedicine.medscape.com/article/1176735-treatment. Updated April 26, 2010. Accessed September 27, 2010.
⁵	Carr C. Key to the classroom. Neurology Now. July August 2007;3(4):31-35.
^6.	Office of Special Education Programs, US Department of Education. IDEA Regulations: Individualized Education Program (IEP). Washington, DC: US Department of Education; 2006.