This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
My daughter Lindsay is 17 years-old and was born with microcephaly (unfortunately becoming a more common household word thanks to the Zika virus publicity) after a rare complication with my twin pregnancy called Twin to Twin Transfusion Syndrome. She was diagnosed shortly afterwards with Cerebral Palsy, was non-verbal and not ambulatory.
At age 6, Lindsay was diagnosed with Lennox-Gastaut syndrome (LGS) after uncontrolled seizures of various types persisted. After years of uncontrolled seizures, she started to lose cognitive and physical abilities. She couldn’t use her hands anymore after years of being able to play with toys and use a communication device. She could not make choices using a head nod for yes and no. She lost a great deal of head control and the ability to chew and swallow requiring a feeding tube later that year at age 7.
Since Lindsay had a basic, functional knowledge of lots of things before the seizures took over, I found it necessary to find a way for her to “share her story” with others who didn’t know her or our family.
I created a hardcover photo book using an easy to use website like Shutterfly, Picaboo or Snapfish for my daughter Lindsay to keep with her all the time.
The idea arose when I had created a hardcover photo book for an elderly family member for Christmas. I wanted that family member to be able to keep the book handy so she could pick it up at any time and look at pictures of her family from throughout the past year. I put a short description, using a large font, on the bottom of each page. My family’s reaction and Lindsay’s hospitalizations shortly afterwards made me realize that Lindsay should have a book of her own, not only to look at, but to show the medical staff a little about her history, her family, her interests and her accomplishments. Medical staff especially loves it because they see Lindsay when she’s healthy and the photos are large with a small description on the bottom of each page.
The book shares her history in a simple format and shows others what she enjoys doing and how she looks when she feels good. I keep it upright, bedside, so it’s easily available and many times is a conversation starter. I also bring it out in the hallway when I listen in on the “doctor’s rounds” of the day.
Create your own photo book
Helpful hints when creating a book for your child living with LGS or challenging seizures:
- Determine parameters of what the book will feature.
- You don’t want to include too many things and people, as the pictures will then become smaller. I featured our immediate family, grandparents, and cousins, using a full page for each so the pictures are large.
- Feature a few full-page pictures of accomplishments, like Graduation Day and a day with close friends.
- Include full-page pictures of special caregivers with your child.
- Incorporate a few full-page pictures of things that your child enjoys.
- For instance, Lindsay enjoys Wizard of Oz and The Wiggles.
- Remember to utilize the front and back covers with full photos.
- Clip art and online photos can easily be added. They don’t all have to be photos
Creating this book is giving Lindsay a “voice” in some ways and makes her feel proud of herself, her family and her accomplishments!
This blog post was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page (www.facebook.com/LGSTogether). Check out the LGS Together Facebook page to learn more about their Innovation Challenge and show your support of the Lennox-Gastaut syndrome (LGS) community. Lundbeck is also proud to support the LGS Foundation’s Family & Professional Conference in April 2016. Learn more here: www.lgsfoundation.org/conference.
This post was written by Diane Hettasch, an educator and disabilities advocate, who lives in Brookfield, Illinois, and mom to Lindsay who has Lennox-Gastaut Syndrome (LGS). Living Well With Epilepsy is grateful to Lundbeck, a Partnership Sponsor of the March 2016 Epilepsy Blog Relay™.
NEXT UP: Be sure to check out the TWO posts tomorrow. One can be found at LivingWellWithEpilepsy and on at Epilepsy Dad for more on Epilepsy Awareness. For the full schedule of bloggers visit March 2016 Participant Gallery.
Be sure to participate in the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers during our Twitter Chat on the #LivingWellChat on March 31 at 7PM ET.