Lennox-Gastaut Syndrome: A Severe Form of Epilepsy
Planning for the Future
As hard as it is to spend each day caring for a child with Lennox-Gastaut syndrome (LGS) or another form of severe epilepsy, for most parents that is not the hardest part. For many, what’s most difficult is planning for a time when they can no longer care for their child. According to the LGS Foundation, most people with LGS cannot live independently, but require assistance from a caregiver or in a group home. Accepting this and letting go of some of the dreams you have for your child’s future is often the greatest challenge of all.
However, as with all of life’s challenges, if you do accept them and begin planning, the result will be much better than if you don’t. There are many things you will need to consider:
- Can your child take care of basic daily needs such as bathing and eating?
- What are your child’s health care needs and how much assistance is needed?
- Is your child able to travel alone to work, stores, etc.?
- Does your child have work skills?
- What is your child’s financial situation?
- Can your child manage finances?
- Are there social and behavioral issues to consider?
- Are there other family members or friends who will help your child?
As you consider these difficult issues, seek legal and financial advice from experts. Ask about what government support your child is entitled to and if any job training or assistance is available. Discuss these options with other family members. Most importantly, involve your child in the discussions and decisions as much as possible. For example, have your child begin to spend time in the group homes or day programs that you are considering. Learning to live with LGS can be a time-consuming and confusing process, so the earlier you begin, the better.
By taking time to explore different programs and talk to experts, you will find the best situation possible for your child. Today, most communities offer group homes that are not only safe and clean, but feel more like homes than institutions. Day programs can provide job training and social opportunities. Here are some links to help you get started:
