Over the last three years, we have shared over 500 business cards and now we have run out. These cards were given to people who either needed information or were so curious, they’d ask questions I didn’t find appropriate answering. Besides, I don’t believe we should talk about someone in front of them, it’s rude. With Jess’s permission, the cards allow us to share her story.
We needed an updated look for her card. By happenchance, this photo was taken outside of the shop, Chance on Main. Their mission statement is:
a for-purpose boutique and gallery
because sometimes all you need
is a CHANCE”
If it weren’t for the founder of Chance, we might not have had a story to tell.
It was late one fall when I expressed my frustrations with her that Jessie did not have a reliable way to communicate. In turn, she mentioned this to her son’s therapist and their response was, “I know someone who is a whiz with computers and AAC”, and this is how we found the app Speak for Yourself.
It made perfect sense for Jess to chose a photo of her holding Lucy the bull by the horns. In essence, this is what she did in order to find her voice. If you want something bad enough, you need to take matters into your own hands.
The first words Jess said to me this morning were, “I love you”. Sure, she could have expressed this in a non-verbal way, but there is nothing more powerful than hearing it said. I hope that when we share her card, not only do people take the time to learn about Angelman Syndrome but they realize how vital it is to be able to choose your own words.
Go to Angelman Syndrome News on Fridays for upcoming columns if you’d like to read more.