The Purple Beads Story (on video)
That Was Then, This Is Now

Each and Every Moment

Just so you get an idea of how tall Charlie is

Clearly I need to work on Charlie and me standing next to each other (as in days gone past). In looking over my posts, I seem to have been posting photos of Charlie riding his bike, and Charlie getting ready to ride his bike, and Charlie riding his bike with Jim, and Charlie riding his bike. Again and again, and only.

I have to say I always feel the same thrill seeing Charlie get up on his bike and pedal down the street as when I first saw him riding his little trike in the living room of our second-story St. Paul duplex and when he and Jim would go, oh, almost a mile and consider that the epic journey of all time. Thursday after school, Jim drove Charlie and my parents out to our favorite New Jersey horse country bike path and they got in their 12 miles and the day was good.

I took the photo above Thursday morning just before Charlie's teacher appeared to take him to class and chat a bit. He had gone to sleep late Wednesday waiting up for my parents (they got in almost at midnight) so he and I again got off to a late start traveling up to the Big Autism Center. He had told me 'no' the night before when I mentioned going to school and seeing his teacher but he was certainly glad to be there Thursday morning: It is a kindly, friendly place, not perfect (I don't believe any school, for anyone, is), but very human and humane in ways that make Charlie feel very much at home.

I'm currently in Ottawa, for the Critical Autism Studies Workshop at the University of Ottawa. There were a few mini, as in very mini, 'crises' in me getting out the door to the airport (water dripping suddenly from the ceiling right onto my open backpack---forgot my raincoat) but suffice it to say, I'm here and looking forward to the next two days, listening to everyone's papers and to some good discussion, interchange of ideas, and learning.

Just as my plane landed in Ottawa, I turned my phone back on and got a text from Jim, that the daughter of a very good friend of his had died in a car accident in Indiana Louisiana.

She was a teacher---a reading specialist, and also a special education teacher. She was smart and vibrant and had that little extra 'something' that made you know, she's going to do good things, great things. A couple years ago she called me early on a Saturday morning (when Charlie was still sleeping---she was very accommodating) and we had a long conversation about autism, during which she showed insight far beyond her years about teaching kids like Charlie. She was writing a paper for a class to a get a Masters in Education. I asked if she'd like to continue her studies and she said that would like to get her doctorate, one day. Then I had to go and so did she, to tutor a cousin in reading.

She had just gotten married last December. Jim and I were not able to attend the festivities but the restaurant where she had her reception is on a road that we often go by, and I always thought of her as I drove past.

I didn't really know her but we heard often of her whereabouts through her father. I think she reminded me of some of the teachers and therapists who Charlie has had, at the mention of whose names Charlie gets his little joyous smile. She was beautiful, she was smart, and she clearly loved being a teacher.

And she was good at it. 

This post is for her, and her family.

How precious, is every simple, single moment we have with those we love.



I hope the workshop goes well.

Your post is a lovely tribute to the tragic and unexpected loss of a young woman who undoubtedly made a huge impact with her students. My condolence to the family members, friends, and families she helped.


Oh, my. How sad. Kristina, I hadn't read this when I met you today. Looking forward to seeing you tomorrow.

Kristina Chew

Lovely to meet you---thank you about Jim's friend's daughter -- and looking forward to seeing you tomorrow, too--

It's been a very good conference. Lots of thoughts percolating---- thank you about the post. Jim has been visiting his friend. I really just can't believe she is gone.

Kent Adams

"Clearly I need to work on Charlie and me standing next to each other"

Perhaps, but the photo is sort of an analogy isn't it for how life was then and how life is today? Perhaps this photo is more representative of your relationship with Charlie and his relationship with you. Not necessarily what we would like to think as parents, but inevitably our relationships evolve. Does this make sense to you?

Kristina Chew

Yes, it does--

I think a lot of things in regard to my comment about our not standing so close to each other---Charlie growing up and away and being more independent, not needing to have his hand held. And, too, my own having to let go and try to fade myself off, just a little.

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