My Big Fear (#192)

My big fear is that Charlie will grow up and grow old.
Memate_7
This is not a worry about whether or not he will be able to read, write the whole alphabet, make his bed, stop where the sidewalk ends, and get a job. Jim and I have been in Autismland–its fragrant jungles, its grey-white tundra–for long enough to know to live the cliché, one day at a time.

My big fear is that Charlie is growing up, older, and bigger. His sweetness and lovability never fade, but now when we staff his therapy team, we look for (1) experience and (2) strength and height.

This is one reason why ABA has been the key to Charlie’s learning. A teaching program that keeps track exactingly of what Charlie does, teaches him in careful steps with a plethora of reinforcement, and notes what in his environment–a certain phrase he’s heard too much (“you should be quiet mouth”), perhaps–is setting off a fit of stomping and repetitive language; a teaching method that provides small, concrete responses to such behaviors, has helped all of us to stay focused and collected. The side-effects of all of this highly-structured behavior therapy have been an increasingly social Charlie, a Charlie who is connected to other people and who absorbs every word said in his presence. A Charlie who has developed real relationships with people.

“His manding was surprising today,” Miss Cindy, Charlie’s verbal behavior therapist, told me. “Without prompting he was using more words.”

Smile, smile, smile, smile, “HOW!” Charlie laughs when Jim asks him who we are going to visit in Philadelphia this weekend? (Charlie’s friend’s name is Hal; Charlie’s pronunciation may not be right, but he does grin to say the names of therapists, relatives, and friends: Aweksicks. Auntykathee. Gramma Grappa. Awiehwah. Mare’linn. Heh’eeeen. Danioh.)

Some kids just do better and get better as they get older, as an autism parent–a fellow traveler in Autismland–recently wrote to me.


I think of the day on a playground in St. Paul, 1999, when a boy younger than Charlie is now said “Can he talk?” Jim and I stammered.

“Early Intervention” (EI) refers to children up to the age of 5 but, more and more, I think that it goes up to 21. That is the age when Charlie’s education will be officially over. For what are these first two decades of a long life but his early years, his formative years? Do we consider a “typical” child ready for the world before they have finished high school, let alone college; before they can drive, and pay taxes, and have their own bank account? Marvelous it is if a child, thanks to EI, enters kindergarten or first grade, with or without an aide. My heart leaps when I hear about kids who are “declassified” and “lose their diagnosis.” Small wonder that we autism parents think of curing and defeating autism NOW.

I think of how Charlie, though “older” and having behaviors no one wants to have to deal with, is able to learn to replace those SIBs with something else, like reading, playing with blocks, asking for his blanket. (And it was a fabulous schoolday; his teacher is starting Charlie on a daylong schedule, which will include more responsibilities for him to complete.) Everyday Charlie gives me a tremendous amount of hope of what he can learn throughout all of his life. Autism education needs to be focused not only on EI, but also on the long journey of an autistic person’s lifespan.

Clara Claiborne Park in <a title=”Rage for Order: Exiting Nirvana and The Siege by Clara Claiborne Park” href=”http://www.jessicapark.com/exiting.html”>Exiting Nirvana: A Daughter’s Life with Autism writes about how, now that her daughter, Jessy Park, is in her 40s, her journey as an autism mother is nearing an end, while her daughter’s own odyssey is but half over. Park’s first book, <a title=”The Siege by Clara Claiborne Park” href=”http://www.amazon.com/gp/product/0316690694/ref=sim_books/104-4187869-8912727?n=283155″>The Siege:A Family’s Journey Into the World of an Autistic Child was probably the first account of a family raising an autistic child at home in the era of refrigerator mothers.

Jessy Park is a painter whose artwork and commentary on her paintings gives me the sort of clues I crave about my Charlie. Park talked, drew, did math, painted all as she grew older, into her teenage and adult years. Today Charlie said a ten-word sentence in the car after hearing his beloved song Dell’Amore Non Si Sa–but his apraxia garbled the words and I was left wondering, was it “green” he was talking about? “man”? “I”? He chose the combo pack of sushi at the grocery store and went back and forth in the aisles to find the things he likes in the frozen food section, and always found me amid the crowd. He requested that Jim, soon as he stepped in the door, put on his “gray pants” and take “socks off.” “Bus, bus,” Charlie called when I told him it was time for bed and he wanted (and got) a piggyback from his dad.

“Take your fear as a safeguard: It is like quickness of hearing: It may make consequences passionately present to you. Try to take hold of your sensiblity, and use it as if it were a faculty, like vision.” So says the main character of the Victorian writer George Eliot’s novel <a title=”George Eliot: Daniel Deronda” href=”http://www.amazon.com/gp/product/0140434275/104-4187869-8912727?v=glance&n=283155″>Daniel Deronda. I chose this quote for my colleage yearbook entry. Then I was full of big plans and starkly, utterly ignorant of any adventures in a place called Autismland. Yes, Charlie is one day closer to being 9, 10, and 21 with each day’s passing. Yes, Charlie may not one day share my pleasure in novels. Yes, Charlie may not paint. Yes, Charlie will keep on learning and growing up and older and becoming as independent as he can be.

Did I say I have something to fear?

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Comments
4 Responses to “My Big Fear (#192)”
  1. Mothersvox says:

    Kristine, Your post has left me with tears welling up, so I will write something more about this later. Thank you.

  2. Eileen says:

    “Mr. I can ride a bike all by myself like a pro and swim like a fish”…I don’t think we need to worry about this kid learning and growing up to be an amazing man some day, but lets enjoy him while he is still 8 1/2. I feel like he’s is my 3rd son! I love your boy!

  3. Mary-Ellen says:

    Ahh, yes I can relate. I have the same fears. Some days it shakes me to the core. Some days I choose to ignore it, but it’s always lurking.

  4. Mothersvox says:

    Now I am less teary-eyed and have written a post somewhat in response to this . . . called What a Difference a Year Makes.

    Last year Sweet M. was completely out of control–fearsome, scary–and this year she’s Miss Congeniality.

    As I said, What a difference a year can make . . .

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