Charlie Said He Wanted the Ocean, So...
Chocolate, Hearts & (Love) Poetry

Another Incident In This Odyssey

Winter finally came - it is cold with snow flurries


This was the first truly cold weekend of the winter and Jim and I talked about a shorter ride in Jersey horse country. We were driving when Charlie started rocking, his torso moving extremely fast while the Replacements played.

Then he turned on an old Barney album, still with the vigorous swaying.

Then on the highway he grabbed my arm, Jim's arm, Jim's hand, Jim pulled over, Charlie hit his head on the backs of the seats.

I reached back and took the iPad and turned it off and it stayed at my feet as Jim got back in the car and got off the highway and turned the car back east towards home. Charlie cried most of the way and called for his iPad which I only handed back to him after we were home and the Replacements had been deleted.

We thought of the great ride at the ocean on Saturday and how Charlie had persevered through a stressful week. There must be some lag? Maybe he was worried that this would be another week in which Jim would go somewhere, despite all assurances that such would not happen?

Charlie slept some in his chair and then woke and wanted a bike ride, pronto. I was making chicken and rice and heating up some fish sticks and said, how about lunch at home first? Charlie munched apples and tried some chicken and fish sticks -- slowly but surely, he is eating some different foods -- and was ready for a bike ride around 2.30pm.

It was cold and the wind blew, and there were a few snow flurries. It hasn't been made the wintriest of winters, but this Sunday surely felt like it and Charlie, after some dinner, watched me seriously as I cut up a watermelon and then went to bed at 6pm.

We heard him coughing some three hours later and saying 'tickle Mom,' meaning that he wanted me ('tickle' is a vestigial phrase from when he said that word to ask for us to 'come and tickle him'). I found him, eyes closed.

'Plug in,' said Charlie, gesturing a bit towards the wall where the cord to his iPad is. I got the cord and plugged in the iPad (on Charlie's bed) and told him I loved him and good night.

His IEP last Friday was good though poignant, the conversation a mix of talking about his progress and how he does at some point learn things we had thought he wouldn't; discussing preventative measures for really serious behaviors; learning that, when Charlie turns 21, he will finish out the school year in June and then, hello, very different, perhaps harsh world of adult services in which the word is not 'entitlement' but 'eligibility.'

In other words, planning for the future starts now (it's already started) even as we address the challenges of each day.

To stay focused, reasonably calm and avoid feelings of 'oh so now that we've got the school piece figured out such that we have completely cordial, informative, productive IEP meetings in which we feel we're all part of Team Charlie -- now it'll be all over in six years and then....' -- I've been (besides the inevitable researchings, phone calls, inquires about 'everything after your child ages out') memorizing the first 10 lines of Homer's Odyssey.




Two friends of mine have sons who love apples, lots of them. One mum speculated as to whether her son likes them so much because they made his stomach feel better. I know Charlie loves apples too, the fish and chicken are new foods?

It's seems so strange to be talking about when Charlie will be 21! Scary really.


I love the "tickle Mom" anecdote. Part of the joy of watching children grow up are the little holdovers - gestures and phrases - that persist from babyhood.

Brenda (mamabegood)

I ha to go back and read the End of the World post. What an honest, beautiful approach. Most people don't know how to respond to differences (head-banging) without looking at the superficial - the helmet is a perfect example and metaphor - and I appreciate how difficult it must be for you to figure out what Charlie's trying to communicate to you. I wish everyone understood as you do that it IS about something else - that he is trying to communicate - and just can't express it in words.

You're amazing.

Kristina Chew

@Brenda, you are too kind! Sometimes I wonder if Charlie is so motivated to communicate because he sees and hears Jim and me jabbering away all the time...

@Jill, I figure I should 'reshape' the 'tickle' -- I think he only uses it at home with us.

@Emma, I've been setting out lots of apples for Charlie to eat! He seems to like to munch on them (except when he had the dreadful stomach illness and swiped them all off the counter -- a sign of how bad he was feeling). Our case manager made a big deal about how Charlie only has (sob) 6 more years in school. I hate to think about it but know we have to start thinking (well, we have) about the next stage.

Yes, the fish and chicken are new. I cut them up small though maybe that leads to Charlie gulping them down and getting stomach distress....

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