Whether you’re meeting with school officials, in a dispute with your insurance company, or speaking in front of a group, it’s important to use your voice to be a strong advocate for your child with Lennox-Gastaut syndrome (LGS). Here are some helpful tips for those who may be new to the world of LGS.
Teachers may know a lot about educating someone with special needs and your doctors may be extremely knowledgeable about LGS, but don’t forget that you’re the expert when it comes to your child. You know him or her better than anyone, so trust yourself when it comes to being an advocate. Be patient, don’t give up, and remember that you have to be his or her voice.
Other families in the LGS community are an invaluable resource. If you’re working through a difficult situation, chances are someone else has been there! Visit the LGS Together Facebook page to hear real-life stories and connect with other LGS families.
In addition to being a voice for your own child, you can also be a voice for the LGS community. Many parents give presentations at their child’s school and in their local community to help raise awareness and educate others about LGS. If you’re interested, consider getting involved on a larger scale as well. You can join groups that support others, like the LGS Foundation or a local division of the Epilepsy Foundation. You can also contact and visit your local, state, and national lawmakers to tell your personal story to help them understand your family’s life with LGS.
There are lots of resources available to help you be the best advocate for your child. For example, you can download the Educating Others Tool Kit to help you explain LGS to your child’s teachers and school staff, or watch this video to hear Jennifer talk about how she has become an advocate for her son, Theo. Arm yourself with information and helpful tools to make the work of advocating as easy as possible!