“One of the things we found helpful was to ‘double up’ with caregivers so we could train them and allow them to build that trusting relationship with Dan—to really understand what it was like to care for him, see his types of seizures, and be able to administer medications—whatever it took so we would be comfortable.”
– Karen, mother of adult son Dan
Finding people to help you care for your loved one is a sensitive issue, especially if your child has Lennox-Gastaut syndrome (LGS). When your child can’t communicate for himself or herself, it all comes down to trust, and trusting your own instincts.
Like most parents, you know your child best. It can be difficult to think about entrusting the emotional and physical well-being of your child to people less experienced at reading and responding to your child’s needs. As hard as it may be, engaging another caregiver to help can provide both a respite for you and an opportunity for your child to develop and grow.
Caregivers of loved ones with LGS offer these tips for finding the right people to join your care team:
To help others do a good job, create a personal profile that outlines all the need-to-know information about your child. This can include types of seizures, medications, and proper dosages; how to communicate either verbally or nonverbally; and a breakdown of the normal daily routine. Also include individual sensory issues your child may find disturbing or that might trigger episodes, like loud noises.