This week, I’d like to draw attention to the subject of “Inclusive Community,” as I find it to be a term excluded from most parents’ vocabulary. For some, it is a vague term that really could mean anything from forming a healthy social life to peer influences in their education plan.  For our family, we are looking for ways for our daughter Sara with special needs to get out in her community, enjoy herself, and when possible teach people about our family and the supports we have in place for her.

Sara was four when she contracted encephalitis. This is an extremely dangerous illness and we were lucky when she was only left with a hard to control seizure disorder, complicated health issues, and intellectual disabilities as residual effects of the disease. I was fortunate to have some great doctors that always shared their thoughts with me and helped change the way I look at epilepsy. One of our first neurologists said,” Lisa don’t ever let epilepsy slow Sara down. The medicine needs to catch up with her. Do not slow Sara down to match the medicines let the medicine catch up with her, not vice versa. I cure patients of epilepsy every year. It doesn’t do them any good if they can’t jump on a bus by themselves and get across town”.

This advice reverberated with me and set me on a steady course in pursuit of a healthy productive life for Sara. My advice to parents with children with special needs is that if there is something your children should be doing, find a way to do it safely with supports rather than giving up and saying it is too difficult to achieve.

Food for thought: with the advancement of technology and scientific inquiry regarding brain injury, there could soon be a break through idea that could drastically improve the lives and cognitive function of people hindered by epilepsy. It might be a surgery, device, diet, or drug. Ask yourself: Are you ready for it? Has your child fully experienced what they could in their community? Have you avoided things you think are too hard? What if they didn’t have seizures, would you have tried them?  Stretch yourself; try something difficult.

One of Sara’s favorite activities in the community is attending the local high school play. Sara enjoyed the musical this year, even though it was a long production—the run time was almost three hours. It took a lot of patience and risk-taking over the years to do an event this long—we used to limit Sara’s activities to shorter events as exhaustion sometimes increases the change of a seizure— but we got there, and we really find being out in our town very fulfilling. The kids in “Bye Bye, Birdie” were awesome, and Sara can’t wait to go see the next production. If you are a special needs family, find some activities in your community; you will be glad you helped make our community more inclusive.  Lisa Bock

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