The Broken Pattern (#265)
19 March 2006
After nearly nine years (plus those nine months in utero) of raising Charlie and living in Autismland, I would say "no" or "not really, but" if asked to rate Charlie according to the criteria of the DSM-IV. Lack of eye contact, lack of emotional reciprocity, hand-flapping, arranging and playing with toys in a set order, and so many others: These get "no's" or "if he does it, he can be redirected."
"Has trouble with transitions" was one criterion that Jim and I always said "no" to in the early days. If anything, Charlie seemed especially to enjoy entering and exiting his classrooms, and smiled to say "hi!" and "bye!" when therapists came and went. But in the past year and a half, we have been noting that--especially at this time of transition, of the changing seasons--Charlie has been having trouble with, yes, transitions. The last day of a beach vacation is not simply a sad event but saturates the preceding days in the swirling black and yellow of a behavior squall. Today any "between-time"--returning from a morning errand-run with Jim and waiting for me to cook a late breakfast; returning from a walk through our little town to wait a half-hour before a train ride--became squall time.
We have been turning to the full apparatus of social stories and schedules of pictures and of words; of simply explaining to Charlie "this will happen and then this"; of ABA; of attending to subtle shifts in Charlie's moods; of I don't know what. And so tonight I searched for photos, laminate, and velcro and put together a schedule to facilitate Charlie's morning getting-in-the-bus routine.
But while these small-scale transitions have led Charlie to erupt in fast-passing behavior squalls, I think that the air of discontent--discomfort--distemper--he has worn for the past week is from his knowing that some really big transitions are on the horizon.
The imminent closing of Charlie's beloved school is certainly one. And his grandparents' changing health is another, potentially bigger, one.
Ever since we moved back to New Jersey from St. Louis in May of 2001, we have spent part of almost every weekend at my in-laws' house. I either cook dinner or we get take-out, Chinese or Italian. Charlie has always found his grandparents' house a palace of delights, from the double garage doors with the mechanical openers to the attic you reach by a ladder Dad magically yanks down from the ceiliing, to the elevator chair up the stairs, to the refrigerator full of strange and colorful jars, to the digital clock in Grandpa's bedroom that Charlie routinely changes (Grandpa never minds). And, of course, to Grandpa and Grandma sitting in their chairs at the top of the stairs, with that lamp and stacks of newspapers.
Since last fall, this comfortable scene has changed, with my mother-in-law having to spend Thanksgiving and Christmas in bed. My in-laws have not been home since January, when they both underwent knee-replacement surgery. We have often gone to check-in on their house, but this fundamental part of Charlie's routine---this basic relationship of his life--has been taken away and will probably not be restored as it was, as my in-laws' rehab has been difficult.
It would be a lot for anyone to see the smart, lively woman my mother-in-law was when I met her several years ago become a weary patient in a hospital bed. What it means for Charlie, I suspect to be an earthquake registering 7.0 on the Richter scale. Because Charlie is a compassionate little boy who loves deeply and who cannot but be confused--feel the world gone topsy-turvy--to see Grandma in a strange bed barely able to reach for her phone, all while the word at school is that one day this very school--Charlie's school--will cease to exist?
It must be that the very fibers of what Charlie knows as his life are being picked out and ripped asunder. Just when everything seemed to be in place, the lovely pattern has been broken, and the loom itself is splintering. And perhaps it is that, because Charlie knows he is soon going to be asked to endure a far bigger change to his universe, that the smaller transitions (that he has been handling so gracefully that I have been walking ahead with him behind) have become almost unbearable.
Charlie has been working his way through a cold (garden-variety: coughing, stuffed-up nose) this weekend, so spending most of Sunday at home proved a good thing to do. We did some of the Edmark reading program and a bunch of dot-to-dot designs, which Charlie took especial interest in, carefully counting off the numbers. We all piled in the black car to "gas it up" for the week. Then, Jim wanted to go visit his parents and off we went.
Jim had to grab Charlie's arm while I went for the head and shoulders when Charlie back-arched in the rehab hospital parking lot. (And why not? I thought afterwards. Charlie knows that things are different.) We visited both grandparents in their rooms. Charlie held their hands and said his "hi's" and "bye's" and, just as we left, "wuhv--yoooo" to Grandpa. Jim showed Charlie how to turn up the heater to keep Grandpa warm and Charlie was very quiet for the rest of evening before crawling peacefully into bed at 8pm. When I checked on him at 10.30pm, he was smiling in his sleep.
I cannot speak for what exactly is an autistic accent myself. I have been studying the writings of many autistic authors and find that each has her and his idiomatic accent that warrants its own interpretation. Charlie's own writing today was not even letters; it was him tracing dashes or dots in pre-set patterns. And maybe if I can figure out what it is about the breaking of the pattern--the tiniest block mosaics and the biggest cosmic orders--that so irks Charlie, I may have a clue to the sinews that wire together the view from Charlie's eyes.
Autism Asperger's Children Science Health
I really feel for Charlie because his world must be so confusing and sad right now because of all the transitions.
We can't avoid them; can we? We have to get along as best we can.
Posted by: Bronwyn G | 20 March 2006 at 02:00
Problems with transitions was something I remember always answering "no" to when asked also, but know I can easily say "yes". I am anxious about our upcoming flight to visit my brothers. Being in a new place for a few days also, I am not sure what to expect from my little guy.
Posted by: Eileen | 20 March 2006 at 03:04
Oh big HUGE hugs for Charlie. It is different when we can do something to simplify the transition so that our child's reaction to it is simple, almost a "yeah, whatever" kind of attitude. It is these big, unavoidable transitions that seem to be the most difficult; the ones that life didn't provide a cheat sheet for, the ones that we can't seem to soften. Big BIG HUGE hugs for Charlie!!!!
Posted by: MommyGuilt | 20 March 2006 at 10:34
DSM criteria just confound! My son doesn't quite fit in to all criteria either, so they slapped the "Not Otherwise Specified" on to his "label."
But transitions? Yes. Very, very difficult for him. And so I can understand at least a touch of what you are experiencing with Charlie.
Best of luck to him and to the rest of your family.
Posted by: Kari | 20 March 2006 at 12:36
From what I know about autism now, and the autistic spectrum, I perceive "autism" as a particular neurological style / wiring rather than a set of symptoms.
Obviously someone doesn't have to be simultaneously exhibiting every sign listed in the DSM in order to be autistic...it's more of a guide to what natural tendencies a person has, how they would act if they weren't "redirected", etc.
To cite the oft-used analogy of cats and dogs: you might be able to teach a cat to fetch a stick, but that doesn't mean the cat has become any less of a cat. Just as teaching an autistic person to read, speak, listen, etc. does not make that person neurotypical.
As should be apparent from my own blog I am quite in favor of teaching all humans -- autistic or otherwise -- and helping them reach their full potential. I believe in the presumption of competence and indeed, intelligence.
Autistics can and do learn to cope with reality, and our brains do not morph into neurotypicality because of this.
Posted by: zilari | 20 March 2006 at 18:54
Who's to say that neurotypicality is aligned with reality though?
Posted by: Bronwyn G | 21 March 2006 at 01:37
Trying to ascertain Charlie's reality has shown me how limited my own view of things was, is, and would be without him.
Posted by: Kristina Chew | 21 March 2006 at 06:47