On Advocacy, Motherhood, and Why They Are Often the Same Thing (#395)
Letting go (#397)

July 22 (#396)

Once upon a time, July 22 was just another day of the year for me---the only significance I attached to it was that, my father's birthday being on the 29th, I had better get him his birthday present. (Also once upon a time, I could never figure out what to get my "oh, I don't need anything, really" dad for his birthday until along came Charlie and the digital camera: My dad is very happy to receive anything with a photo of his only grandson on it.)
That was once upon a time. Seven years ago, July 22 became a date with too much significance for me because it was on July 22nd, 1999, that Charlie received his official diagnosis of autism from the Child Development Center at the Minneapolis Children's Hospital. And how often, in filling out medical forms, school forms, requesting evaluations and services, have I written down "July 22, 1999" beside "date of diagnosis."

And so it has been seven years that Jim and I have lived in Autismland, officially----"officially," I say, because I really think we have been Autismland denizens for nine years, since the time Charlie was born. Charlie was always just a little different. The way he had too much attention to certain toys. The way he held his body, trying to support a very big (even for a baby) head on floppy, grasshopper limbs. Even in utero, Charlie arched his back into a complete upside-down U, as I gathered from the way my stomach rippled up and down. As an infant, he would always arch his back into that U after eating to his content, and fall blissfully asleep.

As a pre-diagnosis toddler, Jim and I again saw that back-arch U when Charlie, with each of us holding one hand, did a back arch: I will not walk left not right away from the house! I will not eat anything but chocolate chip cookies!

As the boy of nine he is today, Charlie still does that back-arch. He does it when he is upset as he was in the black car this evening: Charlie has been having "food issues" all this past week; just after we have gotten him his usual favorites--rice, burrito, fries today---he has sent them flying with a whack of his hand and then that back-arch. I think I have a sense of why these flying-food episodes have been happening---frankly, Jim and I think Charlie could use an overhaul of his food choices (which have been whittled down to some ten things). Or maybe his stomach has been bothering him all week and he has not wanted to eat, but cannot think of how to say that.

It is questions like these that Jim and I have been tossing back and forth together and worrying about on sleepless nights for seven years. And I know that we will be worrying for seven more years, and seven more thereafter, and I hope for many more, with Charlie besides us and always with us. I know that we will have many more days in which we find ourselves wondering, why did that have to happen, especially after that magnificent swim on the beach?. Charlie could barely wait to swim in the "b'ue ocean" today and we---noting the grey skies and the threat of thunderstorms---were a bit leery about our chances to get in the water.
We got to the beach in the late afternoon, and the water was warm, the waves big and foaming yet soft, and how Charlie ran to be in them. He hopped in the shallows, arms out to his sides like a bird preparing to launch into its true element. He kept getting pulled north by the undertow, and Jim kept pulling him out and piggybacking him southwards. Charlie kept walking out farther, farther, and farther into those waves and when they crashed over him, Charlie ducked and disappeared, only to resurface, eyes wet and shining, in the foam.

Charlie was glad to be back in Grandpa's house and eagerly did his Noah's Ark puzzle with me before falling soundly, and deeply, asleep. And I am sitting here and reminding myself----as I have on many nights since July 22, 1999----that the tough moments of a day in Autismland do not cancel out the lovely picture of the boy swimming in the ocean. That a day in Autismland often has both, and that every day---every July 22nd since the one in 1999---with Charlie has been and is good.

July 22nd has become a day I will always remember and reflect on, not only because of Charlie---but also because it is Katherine McCarron's birthday. Today would have, should have been, Katie's fourth birthday, and I have been thinking of her and of her family all day long.

All July 22nd and beyond.



Yes you are certainly right Kristina. The tough moments in a day do not cancel out the good ones. Even if in a particularly bad day all you get is that beautiful smile.
You have a wonderfully positive attitude. I too tend not to dwell on the negative but look for the positives . I'm a glass half full person

As you mentioned in a previous post,you have to have hope.

Hope and lots of love eh?


Hi Kristina,
So nice to see Charlie's beautiful face again:)
Happy Birthday little Katie.
We are thinking of you and your 4 th birthday:)

Alexander's Daddy

Is that Charlie Bogey-Boarding? I tried that this summer and was a total failure. I love it! Please tell me Charlie is actually bogey-boarding!

Kristina Chew

Yes, he IS boogie-boarding---needs help from Jim to pull him out amid the waves. Charlie is doing a lot better handling the board than before----if he fell off last year (and that kept happening, of course), he would get upset, in part because he also had to deal witht he board still being attached to his wrist. The waves were great for some nice rides. --- I'm a real failure too on the board. I prefer just swimming.

KC and Kathy, your words give me lots of hope. Lots.


I know it has been awhile since I've commented: I usually read and reflect on your words, rather than commenting.

But it seems that July 22nd indeed has lots of significance, for your family and for dear Katie's family. So I pull out of lurkdom for the day (one day belated!)

It is wonderful that Charlie embraced the ocean. Just as your family endures the pull and the undercurrents, you can emerge from the foam, victorious.

A lot has happened since July 22, 1999. From different schools to different homes, you've been on quite a ride, holding on the whole way.


For me it will always be June 25th.

You, Jim & Charlie have come far in seven years! No telling where you will all be in seven more years. Something tells me at the Jersey Shore enjoying a fun day together.

Roo came to sit on my lap just now to take a close look at the picture of the "osin" w/ Charlie riding a wave in.

Looks like he will be ready for Sept 10th!

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