Catching up & my blue skies

Dear Friends,

Wow, it seems like it has been a long time since I have posted! I was so drained from an emotionally profound and physically tiring trip. It was so amazing, though, and I am so inspired by it.

I want to catch up with you all about so much, but today I want to focus on my ally, CRP, and wonderful older sister Tara. It was her birthday last week, and I was so glad to celebrate with her. She is my blue skies, and my soulmate, and my mentor, and my ocean and travel adventure guide. She has turned her life sideways for me in the past two or so years, and I am actually at a loss for words to describe her commitment to me. I want to share that she is a brilliant and accomplished person in her own right, a beautiful writer, an impressive researcher, an amazing teacher, and a uniquely compassionate person. I am so lucky to have her in my life!

A big next step to support Spellers like me is more programs and residential communities where spelling is supported through aides trained as CRPs and integrated into meaningful activities for growth and well-being. This would allow us to thrive without being so extremely dependent on our loved ones. It is so difficult to feel that I am holding someone as brilliant as my sister back from her own dreams and her own gifts to the world. She never makes me feel guilty for her commitment to me, and I know she finds it so fulfilling, but I know her dreams are not compatible with being my main support person all of the time. And my dreams are not compatible with relying only on my family.

This is a hard truth to face. I am so appreciative beyond words for all of the families supporting their nonspeaking autistic loved ones, and I hope it gets easier for all of us in the not-too-distant future. I am so excited to be involved in two initiatives to build such communities (Teva Community and The Ohana Consortium), and I am hopeful that our options for fruitful and more autonomous lives will keep blossoming!

So, I want to celebrate the amazing woman who has changed my life, and celebrate all like her! I wish I had better words to describe what she means to me, but as she often kindly reminds me, “it doesn’t have to be perfect to be good.” Happy belated birthday, Tara!

Your Friend,

Danny

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