Misreading the Book of Charlie (#249)
The Worst Times and the Very Best (#251)

Keeping the Faith (#250)

One of the hardest things about living in Autismland is not those moments, those days, when Charlie seems to be back at square zero; when all the hard learning he has done over these past few months seems as if it had never happened. Harder still, to me, is to keep on talking about it: It's always easier to relate a triumphal story instead of how (as happened this morning), fifteen minutes after waking up smiling and singing, Charlie hit the back of his head five times on the floor of his bedroom and screamed.

Jim and I ran upstairs and Charlie calmed down very quickly. Half an hour later, it happened again, only with Charlie running from the kitchen table to the living room and back to his bedroom. And the scream was one we rarely hear, high-pitched, as if something was hurting him.
By chance (or maybe not) I had made an appointment with Charlie's pediatric neurologist in Pennsylvania for the week after next. I had also spent a good part of yesterday morning making a chart of every one of Charlie's screams or other behaviors and noticed a definite increase in the past few days.

Charlie ate breakfast and played a little catch then fell asleep on the couch for two hours, and Jim and I tried to figure out what was going on. Jim pointed out other possible physical ailments, from allergies to a cold coming on to some kind of infection. Reading Charlie is never easy and, indeed, a kind of art. I noted how, ever since Thursday, Charlie has been talking about Barney--"turn on Barney, turn on BJ, turn on Baby Bop, I love you!" "Barney TV, I want!"--and we both recalled how some of Charlie's head-banging has been connected to videos and toys of the purple dinosaur.

So we had explanations medical, behavioral, stim-related, emotional, neurological. How deeply indeed is autism "grounded in relationships: between different sections of the human brain; between genetics and the environment; between autistic ritual and narrative meaning," so that figuring out "what's up with Charlie" is so often an act of translation , of interpretation.

And of keeping the faith.

Charlie was very groggy but smiling sweetly after waking up and slowly ate an apple while curled up on the heater vent. We were halfway on our drive to his usual Saturday verbal behavior session when there came that scream again and, from the thumping, I could tell Charlie was back-arching. A quick glance in the rear view mirror revealed him leaning the side of his head against the window. I turned off the CD player and kept driving as he howled, but no more knocking (though I moved quickly into the right lane). He was engaged, talkative, attentive during his session---with sporadic short screaming episodes and two instances of throwing himself on the back and knocking his head. Miss Cindy and I exchanged frowns and looks of "onward" as Charlie gave her a last hug.

We drove to my in-laws' house and Charlie roamed through the too-quiet rooms and checked out the garage door openers and the refrigerator. "They're still in the hospital," I said as Charlie went into his grandfather's bedroom. Charlie held onto Jim's hand while we visited both of his grandparents, whose rehabilitation from knee surgery proceeds slowly. After a treat of a burrito and a "hot showah" (and serenading me with both "Rudolph the Red Nosed Reindeer" and "Little April Showers") Charlie requested "Wiggles turn on. Wiggles b'ue ocean!" He took out the DVD case for Wiggle Bay but the actual DVD was missing. He and I went through every one of the DVD and CD cases in his room but could not find it. "Oh well," I said. Charlie looked around, forlorn but peaceable.
I turned on his computer, pulled up the Wiggles website and showed Charlie how to turn on a short sample of the Wiggle Bay theme song. He settled himself on his big blue pillow with his blue blanket and pulled out Mr. Potato Head and, smiling, listened. "Turn on Wiggles ocean!" Charlie said when the song ended. "Push the yellow button," I replied. Charlie's fingers are weak and he often had to push hard and long on the touch screen, but he got it after a few tries. After a half hour, he said "Barney stairs bed," got on his bed, soon was asleep.

It'll be a few days or more before we figure out the screaming and I'm getting ready for a little too much noise early tomorrow morning. The morning's behavior tremors had agitated Jim to the point of sighing "he was just like he was a year ago."

It's not unusual in Autismland to find yourself in the dark night of the soul. I don't know what Charlie is thinking at those moments of screaming, knocking, flailing. Often he looks right at us when they are happening and what can I think but he's trying to tell us, "I don't know what's going on you're supposed to figure it out, MOM and DAD!." And there we stand, two parents steeped in knowledge and helplessness, like Demeter searching across the earth after Hades snatches away her daughter Persephone down to the Underworld. Will we ever see our child's face again, and that brightness in his eyes?

"Promise me, bud, from now on we'll have that peace-" Jim said after dinner to Charlie, who responded "peesful ease." "That peaceful easy feel-" said Jim. "Ease-ee feel-wing," said Charlie. ("We've been practising," said Jim to me later.) Just to see that open, loving look on Charlie's face--so relaxed and so himself--as it was tonight: For that I'm lighting many a candle for all those who travel on the dark roads of the night; for all of you who pause and shiver when you hear a strange howl at the crossroads, and then hastily turn down the way you see a bit of glimmer, a honey-gleam-thread lighting a way through the cold, dank, dark.

And onward you make your way, holding on doubly tight to the hands of the two who walk beside you.



Though painful for me to read, beautifully written as usual. It has been so long since one of your posts has brought me to tears. As a fellow traveler in Autismland, I understand your feeling of helplessness at times.

"Will we ever see our child's face again, and that brightness in his eyes?" YES! YES! YES!

I am sure that peaceful easy feeling will return soon.


Strange coincedence - Megan's had a pretty bad day today. One major meltdown and lots of bad temper.

Like you we chart and observe as well as firefight but this one seems to have come out the blue.



Henry has more language than Charlie, and here's what he has said to me lately:

Me: "Why do you keep grabbing your brother?"

Henry (with an almost tormented-sounding shout): "I don't know why mommy!"

His reply has been the same when I've asked "why are you so grumpy?" or other questions to that effect. I guess I am hoping for too much from my little guy. He can "talk" more than Charlie can, but that doesn't mean he can tell me why.

When he says "I don't know why mommy" my heart drops. I think he would like ME to tell him why. And I can't.

I just hope that they know how hard we are trying.


Oh dear, so sorry to hear about this, but am wondering . . .

Could there be a pattern here?

Last week Sweet M had a meltdown at school . . . serious enough that they phoned us to come and pick her up.

My thought is that a good bit of this may be seasonal. . . esp. as it seems that a number of us are seeing regressions in our children this week.

Personally I am very sensitive to changes in the amount of sunlight, and around this time of year I can be prone to changes in mood and difficulties modulating sensory information.

People used to call this spring fever or March madness. I think it's a very real phenomenon.

When the light changes suddenly -- such as a spate of really sunny late winter or early spring days after a number of grey days -- or perhaps just when the amount of daylight passes some critical juncture, I can become very very sensitive.

Sometimes I even feel that the light itself is painful, as people with severe depression and migraines sometimes report. I don't have migraines (TG!) and I don't have to be depressed to have this happen.

When I think about how many hormones are thought to be activated by light levels, this does seem to make some sort of sense.

Also, when I think about how many ASD kids have trouble falling asleep, I really wonder if being in artificially lighted environments keeps them awake.

Maybe our kids are super-attuned to light levels. That makes sense with what Grandin says about giving ASD kids beige paper to read from (so the bright white glare of standard paper doesn't hurt their eyes.)

Also, I think I recall Donna Williams writing about light affecting her . . . something about wearing tinted glasses to adjust light levels.

Coming out of the dark underworld of Demeter's winter is, perhaps, not always as joyful as we would expect such a change to be!

I hope Charlie's feeling better. Sweet M caught a cold, so that's slowing her down . . . and keeping her chilled out!


Thanks for such a well written and touching post. My son has Asperger Syndrome and can talk perfectly well. But even then do I spend so much of my time trying to unravel the puzzle of his thoughts. I think that he is all too often confused by his own actions and when I ask him why he has behaved a certain way, most of the time he really doesn't know. It's sad to see him as such a passenger to his own life.


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