A good new friend passed away yesterday morning

Hi everyone,

I’m sad and still shocked as I write this. I’ve met a couple of awesome online friends these past few months. Amazing self-advocates and powerful figures in the disability community. One is Nai the blind ASL interpreter I posted about a while back.

She connected me to a woman named LaVonnya or Vaunie or Beautiful Unicorn.

Lavonya was quite a unique person. People who first meet her will have their attention caught by the fact that she’s blind, deaf and autistic. That there are a lot of everyday things she can’t manage on her own. That she uses an ipad to communicate rather than her voice.

Strangers don’t stop to listen to what it is she has to say which is so much about herself, her friends, and family. The adventures they have together, her love of singing and dancing and most of all unicorns!

She was 38 when she died. She had a 11 year old daughter who is also autistic and a wonderful boyfriend who is blind and autistic. She had many many online and in person friends and supporters. When I first met her I didn’t know all this. I learned about her daughter and was so incredibly happy that this family figured out a way to stay together and not have any outside agency like social services interfere in their lives. Lavonya was so happy to be able to live at home and parent her daughter, being autistic herself knowing at a deep level what her daughters needs were. She had such a creative way of seeing the world. It was hard for her to remember names of people so she assigned them colors. Same with the days of the week. She thinks in colors and pictures and for myself as a totally blind person this was often hard to relate to. Still I was and am incredibly impressed at the flexibility and creativity of the brain to make sense of the world when other pathways are blocked or damaged.

She had such a sense of humor about her life and challenges that came along the way. As well as being such a solid voice for those with disabilities especially autistic adults, parents, and children. A big mission of hers was helping others understand AAC. This is communication through means other than one’s voice (verbally) mostly technology devices, aps on ipads and other communication devices. She wanted to start up groups for AAC adults and children who use AAC.She wanted to professionally teach AAC to as many people as possible and to shatter the myth that nonverbapeople don’t have anything to say. In her heart touching videos she discusses this as well as every day life. Many were taken down and hoping they can be uploaded soon in order that I can post them here.

Another autistic advocate, Emma, wrote an article where she interviewed Lavonya about her life using AAC and being autistic. It gives a good glimplse into her personality and how she sees the world.

http://autisticatedalmayne.com/autism/speaking-without-vocalising/

I found a good video about her talking about her strengths and educating others

https://www.youtube.com/watch?v=ZsWdvKY8sPY

Please watch this video and read the article. It only gives a small peek into Lavonya and her personality. I soo wish I could have been her friend for years and years, gotten the chance to meet her in person friends and especially her family. And to learn all I could about this amazing unicorn!

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matterstosam.wordpress.com

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2 thoughts on “A good new friend passed away yesterday morning

  1. Sorry for your loss. 😦

    I’m listening to a book right now called Ghost Boy by Martin… Oh shoot, I don’t remember the last name. Anyway, it’s about a boy that uses AAC, and it’s really cool if you’re interested.

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