The Worst Times and the Very Best (#251)

Today we told Charlie that his school will be closing in June . We are sure that he has known this as long as we have–despite his limited speech, Charlie understands everything said around him. And, lacking the words to describe what he feels and thinks, Charlie was all-out mercurial today.
Charlie was at his worst. A simple and often-used request (“get your socks!”) led to him falling back first to the floor and not just once but repeatedly all afternoon. Jim had to spend the day in his office and we had planned to take the train to meet him but after my smiling call to “come on!” as we walked to the station, Charlie flung himself down on someone’s muddy lawn and had to be dragged by the arms to stand up. After carrying up a basket of clean laundry, Charlie put away his dad’s socks, hung up a shirt and buttoned it securely–ten minutes later, I heard the too-familiar thumping and raced up the stairs to a crying child.

Charlie was at his best. We did a few pages of Explode the Code and talked about what was “same” (“sames!”, as Charlie says) and “different.” He wrote his name several times and did pages of pre-writing exercises, all with his best grin. Charlie learned how to used a fork when he was three but, over the past few years, has taken to holding the fork in his right hand and putting the food in with his left. The very phrase “use your fork” so often led to flying plates that we decided to table that skill for awhile. Tonight, Jim took us out for noodles at one of Charlie’s favorite restaurants; I placed a napkin by Charlie’s left hand and gently placed his hand atop it, just as I had observed one of the teaching assistants at his school doing last week. For the first time in years, Charlie ate his entire bowl of “brown noodohs” with the fork, scraping and picking to get the last bits of sauce as Jim and I smiled.

And then there were the rounds of Boggle Junior this afternoon.

We got this game when were living in St. Louis some five years ago. I have lost count about how many times I have taken out the cards and the dice with the letters and pointed to the pictures and the letters–to the anything–as I held them in front of Charlie. My efforts were always futile, with Charlie shooting only the barest of glances at the cards and pushing away the dice.

Based on Charlie’s recent successes with his reading programs, I pulled out the game and found cards of things I thought he’d like: bus, bike, cake. I first asked him to identify each letter and then to find the right letter on the dice, and then to put the dice into the right slots to spell out each word. “Dee-beee! Yooouu. Essss,” Charlie said and then “Bee. Yoou. Ess. Speh’ busss!” We must have gone through a dozen cards at least and, as I presented each, Charlie stayed as focused and interested as at the first.

All the time, I kept on thinking of how often I had been trying to play Boggle Junior with Charlie, in the tiny house we rented in St. Louis, in the anonymous condo we first lived in when we moved back to New Jersey, in Charlie’s bedroom. And today we weren’t just playing it together. We were having a good time.

The best of times, the worst of times; “… the season of Light, … the season of Darkness, … the spring of hope, the winter of despair, we had everything before us, we had nothing before us,” as Charles Dickens’ famous opening sentence of A Tale of Two Cities begins, and these words indeed strike me as an anthem for Autismland. There is plenty worse that can happen as did to this mother in Pennsylvania, whose 5-year-old Skylar perished in a fire last Wednesday.

We do have to hold on to what we have.

After a lively game of catch and a Wiggles DVD, Charlie took himself up to bed at just after 8pm. He did not sleep for another hour, during which I could hear Jim prompting Charlie to recite the Lord’s Prayer: “Trezzpasses! ….. Ay.” “”Amen,” said Jim. “Ayyy-minn,” said Charlie. “Goo’ night! Mommy, I want photos! Tara photos.”

If I may rewrite Dickens: We had nothing before us. We had everything before us.

5 Responses to “The Worst Times and the Very Best (#251)”
  1. gretchen says:

    I’m glad you told Charlie- he has surely been sensing that “something’s not right.”

    It’s great news about Boggle Jr. and about the fork!! Henry prefers to use his fingers for all foods- it seems to be a sensory thing.

    Here’s to a better week ahead…

  2. Eileen says:

    Maybe the change in seasons is causing our kids to be a little off at times. But we take the good with the bad and soon we’ll be back to all that good. It seems like Charlie is almost there. I am sure a good day of learning at school today will be just what he needs. That is truly wonderful how he is spelling and playing Boggle with you!

  3. matt hughes says:

    Hi, my names Matt and I have the privilage of working one to one with a young boy with autism and I just wanted to say the stuff that you write is really interesting and very inspiring. Thank you very much indeed.

  4. Shawn says:

    I know telling Charlie must have been a big step for you. I’ve had to break the change of school news to my son twice this year. There’s part of it that’s truly heartbreaking. On the other hand, I found it a good chance to model some positive behavior in how I presented and dealt with the news. I’m sure you’ve gone over all the same things (any many more) over the past week or so. It’s great that you can see the best of times during a period of stress.

  5. Kristin says:

    Your entry remided me of the saying “Where one door closes, another one opens somewhere.” Maybe Boggle is the beginning of new things to come.


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