He Did It His Way (#315)

The ancient Greek word logos means “account, reason, explanation, speech, utterance.” It means “word” as in “in the beginning was the Word,” the first five words of the Gospel according to John (en arche en ho logos). Our culture places a huge value on the word, on words, on speech and speaking and language. To not be able to talk has been interpreted as tantamount to a person having lesser cognitive ability.
And a child not speaking is one of those first things parents report when they think their child may have autism.

Charlie had four sounds by the time of his first birthday on May 15, 1998: ma [for me], da [for Jim and for something over there], ugi [an expression of contentment], mmmmmm [????????]. Or, those were the meanings we posited for those sounds. Charlie had no words when he was diagnosed on July 22, 1999, and we have ever since placed a huge emphasis on speech therapy, PECS, verbal imitation programs, verbal behavior—on anything that could assist his speech and communication, especially as we sensed that an inability to explain himself was often behind Charlie’s tantrums and head-banging.

The result of seven and a half years of speech therapy and seven years of ABA, is that Charlie (who might have never talked) can say most single words clearly and is slowly, slowly, slowly, working on longer phrases and sentences. And yet, if there is one lesson I have learned in these almost nine years with Charlie, it is that language is not his primary mode of communication. It is that, language need not be the primary mode of communication.
Language serves that role for many of us but I am inclined to think that Charlie self-expresses with much more than just the sounds from his mouth, his larynx, his tongue, and all the anatomy of our speech organs. Charlie has gained a lot from doing verbal behavior when he was three years old and steadily over the past year, but increased speech and communication skills are only the proverbial tip of the iceberg as a measure of what Charlie has learned. Charlie being able to talk more and better is only one sign of his learning; much else–play skills, social abilities, OT, PT–is crucial and helps his speech and him as a whole.

For Charlie’s communication arises from his whole body, from what he does not do and what he does, from the melodies he feasts us with. Charlie does it his way.

Jim and I wanted to take Charlie into Hoboken on the train this afternoon but after yesterday we felt it best to wait and see what Charlie had to tell us before announcing our plans. Soon as we heard Charlie moving in his bed, I ran in and gave him his morning medicine dosage; he then hopped into the center of our bed and, when I tried to get up, ordered “Mommy fwie down!”

The three of us spent one fine day together. Charlie and I sat on the couch and read Little Bear stories. Charlie and Jim rode in a different than usual direction, through a couple of towns and to the park where Jim had gotten a flat tire on Easter. We took the train, the PATH train, and the light-rail to Hoboken (the birthplace of Frank–“My Way“–Sinatra) where we roamed through the crowd at an arts and music festival and got lemonade and fries. We ended up on Sinatra Drive with a fine view of Manhattan. On the PATH, we sat across from a family with a two-year-old and–between looking at her and looking at the industrial landscape of steel bridges, aging warehouses, and piled-up shipping containers–Charlie kept smiling.
“All done!” said the two-year old as we stopped at Exchange Place in Jersey City.

“All done!” echoed Charlie.

On the train home from Hoboken to our town, Jim and I kept dozing off. Charlie was alert and busy looking at the changing view–from the urban landscape of Newark to increasingly suburban vistas (if you watch the opening of The Sopranos, you know what I mean). We went home, and Charlie and I had dinner while Jim went to visit his mother in the hospital. “Daddy talk phone, Daddy home,” Charlie requested as he cleaned his plate. Charlie requested a piggy-back ride from Jim up to bed and then “b’ue–b’ue!” laughing, as he pointed to his blue backpack. I handed it over, and Charlie put it on the floor of our bedroom, then ran down for a second piggy back ride before telling us “goo’ night!”

When Jim and I can hear how to do it Charlie’s way, and can figure out how to make his way into our way, then it’s one harmonious day in Autismland.


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