Thoughts on life, disability, and the power of connection.

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So Tell Me What You Want What You Really Really Want

I have a lot to say so grab your coffee and settle in. Actually, Aidan has a lot to say and I think you’ll want to hear it. First, I wasn’t entirely sure how successful Aidan would be with the Speak for Yourself app when he started using it just four months ago. With the buttons being so small I saw two challenges for Aidan. First, his fine motor skills are less than stellar. Sure he has...

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A Letter to My Valentine

Luv, Do you remember our first Valentine’s Day?  You blindfolded me at the end of dinner and we drove off together. I knew where we were, the twists and turns of the road were familiar. My rightness frustrated you, not for the last time, so you drove into a parking lot and did donuts leaving me confused. You led me out of the car and into a quiet house. There was soft music playing and...

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Food for Thought

Food for Thought – February 9, 2015 Edition What My Disabled Son Taught Me about Disability A few months after Henry was born, I received a call from our county health office. A nurse was calling to tell me that a combination of Henry’s disability and our low income made us eligible for food stamps. She spoke in a hushed whisper, as though she had stumbled into a wake: We hear you’ve had an adverse birth...

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Going Up? Nope.

I’m thinking we are fiercly independent creatures by nature, that it’s less of a Yankee thing and more of a human thing. The toddler that shrieks, “do it MYSELF” becomes the adult who dismissively says, “I’ve got this.” We miss out on so many incredible experiences if we live life that way. In Disability World I believe we’re smacked in the face with being both overwhelmed by the sheer complexity of what it means to...

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When You Give a Mom a Snow Day

When you give a mom a snow day (followed by another snow day then a sick day then another snow day) She will lose her ever lovin’ mind. And when she loses her ever lovin’ mind She will crack a raw egg on her husband’s head (because he said I wouldn’t). ***** True story. This clearly isn’t a real post, more like a cry for help. ALL DONE WINTER!!!! What about you? Have you gone...

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Food for Thought

Food for Thought – January 3, 2014 Football Edition This was my favorite part of the Super Bowl. So much local greatness here: And this is what I see when I watch football: This was not a year for commercials (and dead kid and a traumatized puppy? Come on.) But this was awesome: And a tip of the hat to the Irish:

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Yale Nurses Score and A+

I started my presentation to the Yale Pediatric nursing students by telling them why I love nurses. It seemed like a good place to start. Nurses saved Aidan’s life and advocated for me when I couldn’t be bedside in the NICU. Then I asked the students to tell me what they noticed about Aidan (who was tooling around the classroom), what observations did they make, what words would they use to describe him? They were...

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Food for Thought

Food for Thought – January 26, 2015 Edition A Day for Becoming Someone New On this day, I will become a mother again. I will be starting at the beginning and hoping I remember how this works. I will relearn and regroup. I will see that this time is different– as each new life is different. As she is learning me and I am learning her. I am someone new. What Facebook Means to Special...

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Food for Thought

Food for Thought – January 19, 2015 Edition Please Don’t Praise Your Kid for Playing with Mine We all want to show our kids we’re proud, we want to encourage them when we see positive traits in them. But playing with a child who has a disability should not be seen as heroic or exceptional. Be proud because they see a friend first and not the disability, please help them to keep it that way....

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Food for Thought

Food for Thought – January 12, 2015 Edition She Was Once Called Retarded: Judith Scott didn’t move to San Francisco and become enrolled in her art studio until she was 43. She produced work that has received international acclaim, but did so only in the last 18 years of her life. As wonderful as the critical reviews and commentary written about her are, reading them left me wondering: What beauty have we missed by shunning...