The Letter S

For the longest time the letter s was important.  It was how she said yes with a long extended “s”.  It was how she hissed like a snake.  It was how she responded to Brown Bear Brown Bear what do you…? “ssssss”.  It was the one sound she’s been able to call upon consistently since…

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Bad Night – the movie

I produced a movie that comes out today.  It’s called Bad Night. I guess, if I had thought about it at the time, I’d realize the title has some relation to Rett Syndrome and all the bad nights Rett has caused us.  But, in this case, the two things really are almost completely unrelated.  It’s…

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Idle Hands

I wish she had idle hands.  She doesn’t  She has hands that won’t stop moving.  At times, like now, they won’t stop moving extremely violently.  Right now she can’t control them at all.  I watch as she stares at them moving, and I wonder if she’s wondering how to stop them.  I wonder if she…

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Golf tournament

A few weeks ago I went to a golf tournament in Northern California for Rett Syndrome and I made a video about it.  It’s a great event, very well run, and I think as a result, I’m going to get into golf tournaments.  Not because I’m good, but because it’s fun, I’m raising money, and…

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Father’s Day

We spent father’s day with my family on the East Coast. We’ve written about it before – how much she enjoys her cousins; and this trip was no different.  I think there’s a special bond with family that she understands on a visceral level.  It’s almost like she knows they won’t judge her and they…

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Last Day Of School

Year 1 of school is in the books.  Hard to believe how difficult a decision it was for us to even send her to school.  We were so nervous that she would lose more of her hand function, more of her speech, that without us pushing her every single minute, she would regress. That’s what…

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Connecticut Commie…

A friend from high school interviewed me for her blog.  As much as I talk about Rett Syndrome, I’m always grateful when someone else actually asks me to. http://ctcommie.blogspot.com/2015/05/a-fathers-advocacy-for-rett-syndrome.html…

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Memorial Day and Communication

We’ve been trialling a different eye gaze computer for the last few weeks.  Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming).  We’ve become very adept at reading Maggie, understanding what she wants, understanding what…

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