Taking care of a child or young adult with a disability is never easy. Challenges posed by Lennox-Gastaut syndrome (LGS) can be particularly stressful. LGS affects the family dynamic, touching every relationship—including relationships between parents, between siblings, and between parents and children.
Because of frequent seizures and many emotional and physical needs, children with LGS often require constant care from a parent or family member.
As a parent or caregiver of someone with LGS, you need to be aware of how this disorder can affect the lives of your entire family. By being aware, you can prepare for changes and overcome obstacles.
Every family is different, and so are their needs. Be optimistic and focus on what you can do.
Having a child who has LGS significantly changes the family routine. Because individuals with LGS may be restricted from participating in some activities, families could have a tendency to worry when going out. Time away from home, vacations, and travel might become a source of stress. Parents may feel concerned about not being able to get proper care in case of an emergency.
While every individual is different, families living with LGS must remain hopeful. Family activities, vacations, and even travel are not impossible. As always, it is important to consult with your doctor about your child's medical needs.
Providing care for a child with LGS around the clock puts a strain on parents. In fact, parents of children with LGS have a very high divorce rate (up to 75%).1 Being aware of the pressure caused by caring for a loved one may help to identify and diffuse stressful situations.
Effect on siblings
When one child is sick or has a disability, this can have an impact on the emotional, behavioral, and physical well-being of healthy siblings.2
Younger children may not understand why their sister or brother is getting so much attention or why the family cannot take part in certain activities anymore. To help siblings understand what is happening, some organizations offer resources that provide age-appropriate education.2 These resources can help children better understand LGS and what it means for their family.
It is important to take time out for all the children, so some do not feel as if they are being neglected for the needs of one. Remember to celebrate birthdays and make each child feel special.
As siblings get older, their relationship with their brother or sister with LGS may change. Some may even be willing to accept responsibility as a caregiver.1
The dedication required to care for a child with special needs can strain even the strongest family bonds. Parents need time to focus on the needs of their other children and each other. Understandably, some parents are uncomfortable leaving their child in someone else’s care.3 Sometimes another family member is available, but when that isn’t an option, families need a solution.
When getting medical assistance for your child, it is a good idea to talk to your doctor or a social worker about programs designed to aid and support families of children with special needs.
Respite care is a service that provides temporary care for families of people with disabilities and illnesses.3 Respite can be available in-home and for varying lengths of time, depending on a family's resources.3 By taking advantage of the experience and expertise that these services offer, families can find much-needed peace of mind and some time off.3 Remember that your child can also benefit from this experience—it may be a way for him or her to build new relationships or to explore independence.3 You should not feel guilty about needing a break. By finding time to rest or enjoy yourself, you can help make your family more stable and hold on to the things you enjoy together.
The ARCH National Respite Network and Resource Center may be a good resource for finding respite care.
Remember that you do not have to face LGS alone. You know you have a healthcare team to address your child’s medical needs. By being aware of each other’s needs, your family can be a great source of support and strength. And when your child is old enough to go to school, you will work with another team of professionals to do what’s best for your child.
Get tips on how to manage the rest of your family responsibilities while caring for someone with LGS
- 1. LGS: family issues. Epilepsy Foundation Web site. http://www.epilepsy.com/information/lennox-gastaut-syndrome/lgs-family-issues. Accessed December 1, 2019.
- 2. Gibson P. Lennox–Gastaut syndrome: impact on the caregivers and families of patients. J Multidis Healthcare. 2014;7:441-448.
- 3. Briefing Paper: Respite Care. Washington, DC: National Information Center for Children and Youth with Disabilities; June 1996.