I needed to get sodas for an event at my job on Wednesday and decided that it would be more economical to get them myself rather than to pay $1.25 per can. Charlie and my parents did some more clothes shopping this morning and, as they were sitting down for lunch, I hurried out to ShopRite. I saw Charlie grinning at me from the front window as I pulled into the driveway and then the door slowly opening.
And there I was with 36 (33¢ each) "brown drinks" plainly in view in the back of the black car (it's a stationwagon), all of which Charlie would "mand" to guzzle. (We prefer to limit Charlie's soft drink consumption; sometimes he "works" for it at school.)
And there he was on the porch.
I threw my coat over the boxes and said, "Hi! Mom went to Shop Rite and she got you some green apples and juices." Charlie peered into the bags and then, noting that the back of the car was still up, ran back out. I produced two more bags and he followed me in--I rushed out and grabbed two boxes of soda, shut the trunk, ran to the green car which was parked further up the driveway, found the frontseat door open, opened the backseat door, dunked in the sodas and slammed the door shut and ran back to find Charlie standing in the doorframe, brown eyes expectant.
"Lunchtime!" I proclaimed. "Maybe some....white rice? You can ask Po Po to make it."
"White rice!" called Charlie and ran in to open the refrigerator from which my dad was unloading leftovers. I hurried out, opened the trunk with the key, ran the last box of sodas over to the green car and deposited it atop the two already in there. And locked the car.
Keeping Charlie away from three cases of sodas is hardly the hardest thing I've had to do but it's emblematic of the lengths we autism parents go to do what we think and hope is the best for our children, whether keeping them from drinking too much sugary soda or giving them the best education they can have, an education that prepares them in mind and body to achieve their fullest potential, and for the good life.
Parents often use the metaphor of war to describe how they have to "fight" to get the best services possible, get their children into the best programs possible, "contend" with administrators and bureaucrats and various Powers That Be. And we autism parents do often feel besieged by the simplest struggles of daily life id not utterly defeated before we even strap on our armor when we think about our children's future, whether at nine years old or at forty-nine. We fight the battles on the frontlines of the playground, wage our campaigns for inclusion in school classrooms, marshal our weary forces to another school meeting armed with piles of paper and hope, enter into unequal combat with doctors and "autism experts," wage war within ourselves and with (as it sometimes feels) the whole wide world to understand,
How did it happen that I'm a foot soldier in the autism war trenches?
This martial stance of parents on the frontlines of the autism wars recalls no less figure than Ares, the Greek god of war, mad and forceful and rousing fervor among the troops.
Actually, another of the ancient Greek gods is a god of war: Athena, goddess of wisdom. She is the goddess of war in the sense of strategy, in the sense of the art and craft of war, of thinking and figuring what you have to do to win.
So often survival in our daily skirmishes is more about strategy than having the bigger firearm--about thinking fast to put out small meltdowns before they escalate into behavior problems.
And Athena is not an unworthy guide to summon.
Charlie had a physical therapy evaluation this afternoon. I came with a checklist of skills from hitting a ball off a tee (which he sort of did after the PT had showed him three times and guided him through twice) to testing his trunk strength and supination. The PT pulled Charlie along with her when he did not follow her request to "run"; I hopped in front of him and said "do this" when he sort of jumped at the word "hop." (He imitated me.) Then he imitated the PT to jump and kick a ball (Charlie ran to the ball, stopped, put his foot on it, kicked.) He did catch with two different-sized balls.
With ten minutes to go, the PT pulled out a large wedge-shaped mat and Charlie first went under it and then, yelling, flung himself to the floor on his back and it was correctly deduced that he had had enough. And, that we had not communicated to him how long this straining of his shoulder muscles was going to go on. I turned a piece of paper over and drew four circles on it and wrote "coat on" at the bottom. "You have to do four more things with the PT and then we are done."
Charlie dragged himself through rolling up the wedge (with the PT's help) and down and then back up; at having his extensor muscles tested by reaching for puzzle pieces and high-5's; at standing on a bumpy mat and counting to ten; at pulling coins out of a hard piece of putty and patting it into a disc. Each task completed, I supported his wrist so he could cross out a circle until all arms were thrown down and I said "time for coat on!".
As we headed out, the PT noted a few things: low muscle tone, no real reciprocal motion in his arms, not good pushing off when jumping, awkward shifting of his weight in balancing. I jotted everything down: Charlie will need therapy to work on these and more.
Realizing that developing Charlie's physical skills goes in hand-in-hand with helping him making progress in his writing, his speech, and many other areas is not a connection I would have made a few years ago. We worked with the OT on programs liked Handwriting Without Tears; Charlie's handwriting is pretty much in the same scrawly state as it was three-plus years ago. We felt more than strongly that Charlie yelled or stomped or head-banged because he was trying to communicate what his language could not express and so we pushed for more speech services, for verbal behavior---all for the good, but these were only one part of the solution.
I wasn't thinking strategically, about how Charlie's loping gait and tendency to keep his head tilted might be related to his loopy writing of c and h and a and r so that they all kind of look alike. Jim and I have noticed that lots of exercise--biking, swimming--seems to precede an increase in the quantity and quality of Charlie's speech. I certainly was not thinking that the answer to head-banging was working on play skills and on reading and writing.
I was thinking, the only way to vanquish Troy is to (as the Greeks in Homer's Iliad did, for ten long years) lay siege to the walls and fight and see hero after hero fall.
I wasn't thinking about something like the Trojan Horse, the great scheme--strategy--trick--Odysseus devises: A giant hollow wooden horse filled with armed Greek soldiers that appears one night before the gates of Troy, and the Trojans drag it inside their doomed city, thinking it a sign from the gods that they will win.
I needed some more strategizing tonight in the face of Charlie's anxiety about my parents' departure tomorrow. "Mike here! Mike here!" he kept calling before his ABA therapist came. Charlie giggled plenty and grabbed the therapist's coat and shoes and hid them upstairs. After a half hour, Charlie's anxiety was back and he called for breaks and did not want them, he got up suddenly from the table and threw himself on the floor. The therapist worked through it all, did almost every program, and had Charlie talking and silly by the end.
I had been avoiding talking to Charlie about my parents' leaving--the silly one was me. Of course Charlie knows. Next time I will print up photos and write out a schedule so Charlie can see the duration of my parents' visit and understand how to handle the transitions. Simply showing him photos of my parents along with their California house helped to focus him tonight.
When you're in the thick of the autism wars, a little strategy goes a long way.