Tell us about Emma and your family
Emma is our first child. We were so excited to find out I was pregnant with a little girl, but we didn’t realize Emma had a brain bleed in utero until about a week later. They found her ventricles to be enlarged. We were told she would need a shunt at birth to help the fluid drain from her head.
She was diagnosed with hydrocephalus initially, and once she was born, she started having many more issues. She has development delays, Lennox-Gastaut Syndrome (incurable form of epilepsy), cortical visual impairment and chromosome 6q26q27 deletion.
Emma requires 24/7 care and attention but has made our family stronger and better people because of her. Emma is now five years old and has a 20 month old sister, with a second sister due to arrive imminently!
When did you first notice issues with Emma's vision, and how was she diagnosed with her CVI?
Emma initially did not seem to have any vision issues. We started noticing her one eye wandering and she wasn’t really tracking. She would only look at the light between the blinds on the windows or a fan that was spinning.
We started with a vision teacher and she suggested we see an ophthalmologist. Emma was diagnosed with CVI a couple of months after her first birthday.
What support has she received with her vision over the years?
Her vision teacher and doctor were both very knowledgeable and we started all of the typical techniques for working with a child with CVI. We use lots of lit objects for Emma, together with reds, greens and yellows on dark backgrounds. We never just grab her hands, or appear out of nowhere. We tell her constantly what we are doing, but without using too many words as she gets easily overwhelmed with too much stimulation.
Emma still gets weekly vision support, and we see her doctor once a year. We did visit Dr. Roman in Pittsburgh 10/2019 to see if there was anything else we could be doing to help her.
What have you come to understand about the way Emma sees the world?
The best way it has been explained to me is that it’s like looking through a kaleidoscope. She sees bits and pieces of objects but can’t make out any specific thing. She doesn’t see faces or detail like we do.
Emma has not made much progress visually and is very slowly inching along the CVI scale. She doesn’t walk, so she is constantly moving her body which makes it quite difficult to work on visual activities.
Tell us about your experiences of using books with Emma
I had always pictured myself reading books to my child and having them read them back eventually. Unfortunately, that was not the case with Emma. She was never into books. She didn’t look at the pictures or care about the books themselves. She obviously never asked for a story at bedtime or for me to read her favorite book. Once her vision teacher started, we tried to pick books with black backgrounds and very simple pictures. Emma still needs very simple books and subject matter. We try to read to her and let her listen to the words as well. Reading is very important and we’ve had to adapt to the way Emma “reads”.
How did "Emma Bear" come about?
Even before Emma was born, we referred to her as “bear” or “Emma Bear”. We loved the nickname and it just stuck. It seemed like a fitting character for our books. I started a blog after her second surgery just to be able to express what I was feeling emotionally at the time. I also named that “Emma Bear” and that is the name we’ve had all along.
My brother is a fantastic artist and we had been talking about books that Emma likes and I explained to him that Emma doesn’t see the pictures/words on a typical book because of her vision. He had the idea to make Emma her own book and it started from there. He designed the character and I wrote the story. We consulted with Emma’s vision teacher to be sure to encompass all aspects of what a child with CVI would need.
We posted the book on Facebook and my blog and got some orders. I would encourage other parents to write their own books because if it isn’t available to our children then we have to be the ones to make it available for them.
Any more books in the pipeline?
We have a couple more books lined up that will be released this year. We recently set up "Emma Bear" to be available on Amazon. We are also looking into making a book on tape or with some other auditory feature since Emma absolutely loves music.
Thank you Lauren!
If you would like to buy a copy of "Emma Bear" and you are in the US, click here for Lauren's online store.
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