Helmet On!: Anger, Autism, Achilles (#121)
Anger is something we autism parents feel too much of too often: After our child has spent the entire day saying "Gong Gong Po Po" and "Gong Gong Po Po" to the tune of "Farmer in the Dell" with screaming intermixed. When, on seeing an ASD child howling "I want my mommy, I want to go home" and kicking up a frenzy in the school entryway, another parent said to me that it was all right to have kids like Charlie in the school "so long as it doesn’t bother anyone." When I hear about head-banging heavy metal bands. In the midst of fifteen minutes of restraining Charlie yesterday morning. When I hear other things and think that "injustice anywhere is a threat to justice everywhere," in the words of Martin Luther King, Jr..
Or maybe anger is too weak a word: What we feel is more like wrath. Or rage. These are all ways of defining the ancient Greek word menis, which is the first word of Homer’s Iliad (ca. 8th century BC), which is one of the first works of literature of Western civilization. The Greek tragedian Aeschylus (5th century BC) uses the word teknopoinos, "child avenging," to describe menis (Agamemnon, line 155). "Child-avenging rage": That’s quite heavy wording to refer to one’s daily early 21st century suburban/urban existence with its minor woes of commute traffic, a nearly empty gas gauge in one’s car, the cell phone battery running out, no more apple cinnamon gluten-free waffles. There is some "something" in Greek tragedy (and literature overall, but that’s for another blog) that speaks right to our gut and soul; perhaps it is that the menis Klytemnestra feels about the loss of her daughter Iphigeneia for the sake of the Greeks sailing to attack Troy–"anger/wrath/rage" on a par with our "why is this happening to my lovely child?"–this feeling is precisely what we feel when we see our children suffer.
Charlie’s sufferings, veteran readers of this blog do know, have often occurred in the form of "behavior squalls": Tantrums with kicking, screaming, crying, etc., and–a breath-stopping scare to anyone–head-banging, that is, self-injurious behavior. Readers of this blog will know that Charlie has not head-banged at home for just over two months, since the start of August. I have written about the medication our neurologist has prescribed to help Charlie with this terrible behavior. We know that Charlie is telling us something when he hits his head and, after scrupulous observation and a lot of thought, we have a sense of the causes behind his SIB. We know that Charlie knows that he knows he is not supposed to hit his head: Over the past months, he has been talking about "no head bangs, no more head bangs! You bump your head? No more head bangs! Charlie no! No!" (And smiling and making eye contact, as if telling us, yeah, I know I’m not supposed to, I know.) And we continue to be pro-active and strive to teach Charlie more appropriate ways to communicate and to act.
The suggestion of Charlie wearing a helmet has been broached more than once, and the obvious safety concerns cited. It is probably impossible to describe what goes through one’s mind and blood and soul on hearing the word "helmet." It is likely that Charlie’s feelings about the matter are not considered when such a directive is made. It is true that Jim and I just do not know what Charlie thinks about these things, due to his limited language and his cognitive disability. Charlie is our boy who has occupied the better part of our lives for the past eight-plus years. We hazard that he would be as baffled as the next person (imagine yourself as Charlie) to find something like the helmet he wears to ride his bike strapped onto him say, tomorrow morning. We understand there are safety concerns and other issues. We understand that Charlie understands a lot more than he presents with, and that this is all too often manifested in ways other than speech.
Charlie talked about putting his "helmet on" this evening–the one he wears to ride his new gear-controlled bike. He grinned at me: "Stop sign, squeeze brakes! Helmet on!" We have been having him wear his helmet since we pushed him around on his tricycle: Safety first.
I had roused Charlie before 7:00am to change his sheets; at first he curled up in Jim’s and my bed, saying "Gong Gong Po Po" over and over. I noticed that Barney was on at 7:30am and Charlie ran downstairs with alacrity when I told him "Barney is on TV!" He stopped sobbing while watching the show and started up again (and for the better part of the day) on the ride to school, throughout the school day, after I came home to find him hanging with Danielle who had both done a speech therapy session with Charlie and given him a shower (after she picked him up at his afterschool program and discovered that he needed at least a change of clothing). Charlie dragged his blue blanket into the car and said "McDonalds burger fries" when I asked him if wanted that or sushi for dinner.
After a long wait in the drive-thru line, we headed to the office of our home consultant for a clinic meeting. Charlie kept peering into the black car’s windows in search of his fast food (concealed in my bag), as I called him to follow me into the office. I had put his big brown dog in the car and he carried it in. And he had a ball doing pre-reading drills with his therapists ("his girls"), smiling so brightly when all five of us cheered when he matched a picture of a book to the word "book," and checking out the office’s nooks and crannies. Back at home, Charlie smiled as he slid around our living room on a swivel office chair. He smiled to see my parents. He crumbled a gluten-free cookie and used it as modeling clay. He smiled to see Jim return, and then went up to his bed, calling out "goo’ night." He was soon asleep.
It had been another decent day for Charlie, and so for all of us. When I found Anonymous’ invective comment, I said to Jim: "Yes, bring it on!"
(In the midst of writing this post, I received a comment from my fellow Autism Blogger and Autism Parent, Wade, in response to Anonymous. I was quite overwhelmed on reading it.)
For much of the Iliad, Achilles isolates himself in his tent after his quarrel with Agamemnon and the besmirching of his honor when his "prize" (a captured woman, Briseis) is taken from him. Staring into a computer screen and spewing out words of invective and worry and despair and love about one’s child may look like a solitary endeavor. But, in truth, the friends I have made since I started writing this weblog have been a priceless gift. We can join together, and dream, and act, and together have the strength to change the world for our priceless children. I’m donning my metaphorical helmet and marching on beside one courageous young soldier named Charlie. Autism Children Science Health Parenting