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She found her voice by Chance

August 11, 2018 by Mary 7 Comments

The front and back of Jessie’s new business card

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.

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Filed Under: AAC, Blog

Reader Interactions

Comments

  1. Sharon Baer says

    August 12, 2018 at 1:33 pm

    Beautiful ❤

    Reply
  2. April says

    August 12, 2018 at 9:08 pm

    Love, love, love! I cannot wait to write a similar story about Elise!

    Reply
  3. Liz says

    August 14, 2018 at 4:00 pm

    We are so proud of Jess, and you, for working endlessly to grow, to share, and to inspire more chances! Keep speaking–both of you!!

    Reply
    • Mary1991 says

      August 14, 2018 at 4:20 pm

      Thank you Liz. We are so grateful that you are part of our story!
      Often doctors and schools close doors, however, when Mom’s share
      information, anything can happen!

      Reply
  4. Mona says

    March 19, 2019 at 10:06 am

    Hi Mary, i’m so excited to find your blog. I just join SFY group in FB & someone told me about this blog. I’m super excited because we’re trialling 2 of other AAC apps which we are not completely satisfied, so in the midst of a little frustration i did more research on other program & found SFY which looks promising for my angel, Dan. He is 4yo. I know many angels using P2go but never found other angel using SFY. So i’m so glad i found you. We’ re still debating with which one to go but i’m quite convinced with SFY, do you mind sharing how’s Jess with it? Or maybe send me the links to your particular blogs if you ever blogged about it. Thank you so much Mary. ❤️🙏🏻

    Reply
    • Mary1991 says

      March 19, 2019 at 12:05 pm

      Hi Mona,
      There are many Angel families using SFY. What makes SFY stand apart from the other options is that there are only two layers. This was the biggest issue my daughter had with the other programs. Initially, it works but if they can’t access the words quickly and having robust words available they lose interest. I was looking for a specific post by the uncommonsense blog where she tells why she chose SFY. Though they aren’t Angel family, she is a very good resource. I’ve noticed that the other programs have slowly incorporated features that SFY has, however, they will never be able to find 14,000 words in two taps. The last thing off the top of my head is SFY is a program that you can support at home because it is not complicated. Once you understand the logic then it is very easy to support.
      If you have any questions, please feel free to ask. You can also search in my blog with keyword Speak for Yourself. When I started the blog, I did write about how we came to find SFY. Jess has been using it for about 6 years now and has never stopped talking. I wish this had been available to her when she was 4. Good luck! You are on the right path 🙂 …. sorry, I’m if this wasn’t complete, rushing out the door

      Reply
    • Mary1991 says

      March 22, 2019 at 11:37 pm

      Here’s a link sharing why we chose Speak for Yourself
      https://www.youdontsayaac.com/speak-for-yourself-why-we-chose-this-aac/

      Reply

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