"Bedtime red! Bedtime orange. Bedtime white." Charlie smiled at me, ran into the room where we had moved his bed Wednesday night, threw his pillow with the primary-colored pillow case into his old room, knocked off several squish pillows and fleece blankets, stripped off the sheet and the plastic cover. Then he pushed and shoved the bare mattress half off the box spring and flung himself face first lengthwise onto this impromptu slide. "Tracy farm fahm-lees!" "Yes," I said, watching his antics which now included jumping and running up and down on the mattress, "Miss Tracy had Farm Families at summer school." "Barney eyeluhvoo, BJ eyeluhvoo, Baby Bop eyeluhvoo!", proclaimed with sparkle eyes. "Yes, Barney I love you, Mom loves you, we all love you" I replied. "Luhvoo," said Charlie. I thought of the two-armed tight hug he'd given Cindy at the start of his verbal behavior session this afternoon--most people get Charlie's famous backwards (no-arms) hug.
"Bedtime" is a word with a multiplicity of meanings in Charlie's vocabulary. It does mean "time for bed" but also the whole act of being in the bed, getting into the bed, and all the stuff on his bed now and in the past. So, "bedtime" can be aversive (when Charlie wants to stay up but it's nearing 11pm) and it can also mean the many items that have accompanied Charlie to bed over the years. For a long time, it was Barney in a particular spot to the right of his pillow, the toy computer Alphabert, and a black laptop bag Charlie had purloined from Jim (and into which a five-year-old Charlie had tried to shove Barney and Alphabert and walk out the door with--I was watching this whole process and forestalled any escape). Charlie has never forgotten Barney and Alphabert as part of his beach house bedroom experience, even though--both toys having had to meet their fate in the garbage--it was more than two summers ago that he had them as bedtime companions.
Barney's sometimes replacement in the spot by the pillow is a stuffed black dog; Alphabert's, a portable DVD player. But, most nights now, Charlie sleeps with no toys, just his pillow and Daddy's blue blanket. He enjoys talking about Barney, and always laughs when I remind him about how he is "too old, a big boy now" for Barney. He seems satisfied looking through some Barney books (alongside which he arrays his white sneakers, in replication of the opening sequence of the Barney show). And, the appearance (resurrection?) of Alphabert at the verbal behavior center has more than made him eager to hop into the black car on Thursdays and Saturdays to work with Cindy.
So, the meaning of "bedtime" for Charlie is both very specific and also full of associative references. "Bedtime" is when he's so supposed to go lie down on his bed and go to sleep (usually because of "school tomorrow"). And "bedtime" is a place and time when he is with his most beloved stuff, be it Barney or Alphabert or Daddy's blue blanket, with the stuff that warms and comforts: Squish pillows, soft fleece things, hugs and kisses and "goo' nights" and Jim singing "Let me tell you 'bout my best friend." "Bedtime" has something to do with words like "you're my best boy" and "we love you Cholly, oh yes we do" and "I love you."
I often think that Charlie understands both very concretely (in conjunction with the "official" definition of autism) and thoroughly metonymically. Metonymy is a literary term that is similar to metaphor, in which something is related to something else because of a similar characteristic (i.e., saying that "autism is a natural disaster" or understanding the minor accident I got into tonight--someone rear-ended the black car as we paused to merge--as a symbol of the uncertainty of life with autism) (the car's bumper is a bit scraped--"it happens"). In metonymy, one thing is related to another because those two things just so happened to occur in close succession to each other. So, for a while, "sushi" meant "bike ride" to Charlie because I had one day bought him sushi for lunch after he and Jim had been on a bike ride. And so "bedtime" might mean something about the feeling of "I love you" because Barney--with his signature song--once was Charlie's faithful bedtime companion.
It feels almost unnecessary to say that, compared with experiencing an earthquake or a hurricane or being in a war zone, the suffering of life with autism is certainly bearable, not terrible, not comparable. But I think we parents can still appeal to metaphors of catastrophe in speaking about how autism crashes into our lives and being and into our children. Charlie can talk; Charlie's language is a constant puzzle we--his parents, his teachers, his therapists, his two sets of grandparents, his babysitters, everyone--all strive to understand.
Something concrete and routine can speak the strongest to Charlie. We visited Jim's parents tonight and got our usual Chinese take-out. Charlie told them "shoes on" by which he meant for them to take off their shoes (he took off his grandmother's and tried one on, to her amusement); ate a lot; climbed on railings and jumped on furniture. And fell easily asleep on his bed (hastily remade by me) in its new location. The take-out, the visit, Cindy and Alphabert, the rides in the black car, all said "normality"--no problem--"it's okay": It all added up to one fine day for Charlie and for us, in every sense of the word.