Thursday, June 30, 2011

So Long Spontaneity

In the movie, Pretty Woman, the Julia Roberts character, Vivian describes herself by saying, "I'm actually, no I'm not a planner. I would say I'm a kinda fly by the seat of your pants gal, you know moment to moment." I have never been a very spontaneous person, a "fly by the seat of your pants gal," but spontaneity becomes an even greater challenge with autism introduced into the mix.

As you might guess, David is the polar opposite of spontaneous; you might say rigid, scheduled, deliberate. He does not tolerate change well and we spend a great deal of time preparing him for the next season, next event or trip to the store, next shift in wardrobe. I did not give a second thought, however, to preparing him for our first visit to the splash park, technically a sprayground (how clever) which is close to his school.

We were waiting for some workers to be finished at our house one weekend afternoon, which was irritating David, so Michael and I decided to drive past this splash park. We grabbed a towel and piled into the car without telling the boys where we were going. I wasn't sure exactly where the park was located and my niece, while extremely talented in many areas, shares my sense of direction (or lack thereof) and had given me pretty vague directions. 

We did manage to find the park and I knew from David's reaction to that very first glimpse that he was hooked. In fact, he immediately dubbed it the rainbow park in honor of the four curved metal spray arms, each painted a different color of the rainbow. I felt so relieved in the knowledge that David and I could have a new summer hangout with no legwork necessary. I did not have to prepare him for the visit. There would be no coaxing of cajoling. What a tremendous relief.

Still giddy with excitement, we pulled into a parking spot and decided to let the boys spend a few minutes running through the water. As David and Andrew charged up the sidewalk I happened to notice a pile of discarded clothing in a heap behind the blue bench. Did the earlier kids just strip naked? I thought to myself.

And then I heard Andrew yell sternly, "David, NO!" I looked up, but not before I saw the trail going up the sidewalk—first Crocs (called pool shoes in David's vernacular), then a red shirt, followed by David's shorts a few feet away. I looked up just in time to see the SpongeBob Squarepants undies making their descent.

In all my nonchalance about the rainbow park, I had neglected to tell David that it was okay to get his clothes wet.

For the time being, we are probably not to be classified as an impulsive family. The closest David has come to being a "fly by the seat your pants" guy was probably that day at the rainbow park—flying up the sidewalk with the seat of his pants exposed. Do you suppose that counts?

Tuesday, June 14, 2011

The Extraordinary Shirt

Last week, I posted this unusual picture of David. It was, of course, strange because David is not wearing a red shirt. This shirt does not have a red stripe, red lettering, or even a red tag in the collar. (And no, for those of you who inquired, he was not wearing red shorts, either. I did crop the picture, but not to conceal red pants. I was trying to hide the fact that David has recently overcome his Band-Aid aversion and now insists on wearing a Band-Aid on each knee, which is an altogether different story.)

I found the new shirt shoved into David's backpack the first week of summer school. Although a cute shirt, I momentarily considered putting it immediately into the Goodwill pile. Instead I washed it and tossed it into his shirt drawer on top of the lone stack of shirts not a shade of scarlet, crimson, ruby or cherry (incidentally not David's favorite color red, because not all reds are the same). I figured I would not have to consider it again until it came time to pack away the summer clothes for longer sleeves months from now.

And then the note arrived. It was a permission slip for the first of three summer school field trips and a note asking that all students wear their new shirts for the trip. At first I laughed and thought good luck with that, but then the mommy instinct kicked in.

We are constantly worried about David's security in numerous ways, but the issue we confront most often is David getting lost. If he gets separated from us—or lost on a field trip—he does not have the ability to tell someone his telephone number, or address, or my name. He will occasionally tell someone his name if asked, but he still refers to himself as Ginnie, completely ignoring the rule that your mononym should have some vague allusion to your real name like Cher (Cherilyn Sarkisian), Prince (Prince Rogers Nelson) or Bono (Paul David Hewson—wait, what?!?).

Anyway, my first line of defense is always an ID tag that David wears on his shoe. In this instance, however, the shirt would serve as extra insurance. It identified him as a part of the field trip and, if he got separated from the group, listed the name of his school. Now, if I could just convince him to wear it.

I started talking about the shirt three full days before the field trip. I told him the principal said he needed to wear it for his field trip. The assistant principal said he needed to wear it. His teacher and the paraprofessional in the classroom (his new favorite person) both said he needed to wear it. He seemed receptive, even referring to it as the "two how-hend a-na-na" shirt, in reference to the year printed at the bottom.

I was hopeful, confident even, that David would wear the shirt especially if I allowed him to wear a red shirt underneath and when the moment of truth came, David was completely agreeable. I did not have to coax him, or bribe him with the red undershirt, or chase him into a corner. He just put it on like it was no big deal. And then he went back to wearing a red shirt the next day…and the day after that.

Thursday, June 9, 2011

A Day in the Life

Andrew was seven years old when David was diagnosed. It was a difficult time for all of us, but I originally underestimated the effect that the diagnosis would have on Andrew. I did not think that he was really old enough to understand what was happening, until several weeks later when he asked if David had the type of "handicap" (a word that I don't recall having used) that would allow us to park closer to the store. Maybe some additional explanation is required, I thought at the time.

Andrew has always shown wisdom beyond his years, especially pertaining to David. He has written the following essay for Quest Above and Beyond, a gifted and talented summer school program offered by our local school district. The assignment was to write about an important event in life and this essay is Andrew's submission for the class. 
A Day in the Life
By Andrew
Autism. It means nothing to the average person. Although I am not the average person because of David. David is not the average person. The world will know of the word Autism. Because of David.

Autism is a disease of major effect. It makes someone lack social rules so you do not learn words at the normal speed. It can make people be a little quieter with strangers. David can break the rules a little bit. To be like he should be.

My major scar is not physical, yet emotional. Hearing David had Autism scared me and confused me. What was Autism and how could I help. If I could help. If anything can help at all.

I learned that I can help David with daily things. David can help himself with daily things. We can help each other with daily things. And we know that together.

Now David has shown me the meaning of recovery. He has shown the world freedom. He will show the world the meaning of Autism.

Wednesday, June 8, 2011

Extraordinary Picture

There is something unusual about this picture of David, taken this morning. Any guesses?

Tuesday, June 7, 2011

Battle of the Brothers-in-Law

Yesterday, my grandmother turned 95 years old. I sent her a card, but the big celebration was held over Memorial Day weekend. About 25 relatives gathered at my sister's house for a dinner in her honor.

Michael and I had talked about whether or not we should include David in the celebration, particularly because he has been having an extremely difficult time since the last day of school, which he has been trying, in his own way, to tell us. He did not want to go to speech therapy on the last day of school, did not want to get his haircut the following Saturday, and had no intention of walking into the sanctuary at church on Sunday. On each occasion, he made his own wishes quite clear. We made him go anyway. And while we may have lived to tell the tale (and forced the issue in two of the three incidents, not really wanting to drag a protesting six-year-old into the middle of a church service) I would not say that any of these events was a success. By the end of the first weekend of summer vacation break, Michael and I wanted to curl up in the fetal position until August.

This time, David told us that he wanted to go to " Gramma Roof's burt-day party," however, so we decided we would take him. I went slightly early, so I was able to watch when Michael and the boys arrived. To my surprise, David waltzed into the party like he owned the place. He greeted everyone with his snaggletooth smile, including people he would not ever remember meeting as they were last in town when he was just over a year old.

I was breathing a sigh of relief and wondering why we had been so uptight, when David marched right to my sister's garage door and starting repeatedly opening and closing it, which may sound harmless enough. I wouldn't particularly want my dinner guests to get a peek into my garage, but since my sister must have the cleanest garage west of the Mississippi (and I only qualify my comment because I have not seen many garages east of the Mississippi), I really didn't care…UNTIL the caterers arrived.

Having parked their catering van outside the far garage door, they thought they needed to come through the garage door into the house to unload. I tried ignoring the situation. Maybe they would just think David was an uber-helpful, albeit short in stature, doorman, but then there was the excited hand-flapping and the jig was up.

I explained the situation to one of the caterers, who has a relative with autism. It is always so nice to meet people who "get it." Anyway, they were patient with David as any attempt to have him step away from the door would have simply made matters worse and the trays of shrimp, roasted vegetables and meat for the grill made it into the house without incident. David, however, did not make it until dinner. Having crawled into my sister's car, he turned on the hazard lights—not too subtle, David. My niece graciously offered to take him home so that Michael and I could enjoy the party.

David was all too happy to go home, although not before spying my sister's garden cart in her garage and since her security seems to be more lax than the local SuperTarget, he managed to steal it and she (also graciously—must be a family trait) is not pressing charges. Apparently, David chose to decompress from the party by climbing under the dining room table with the brand new garden cart and his portable DVD player to watch a movie, which is where Michael found him when he arrived home to relieve my niece.

We all react to stress differently and while David was chilling under the dining room table, I was trying to hurry home and managed to drop my keys while "helping" my brother-in-law load some things into to back of my CRV. I turned just in time to watch the keys slide right into the storm sewer. My sister and niece came out of the house with one puny flashlight after another (guess what they are getting for Christmas), finally revealing the keys' location on a ledge about eight feet down.

I really wanted to retrieve those keys, remembering how expensive it was to replace a car remote and key when Andrew chose to tuck them away inside his Noah's ark as a toddler, only to be discovered long after the car had been sold. My brother-in-law, John, who probably would have replaced his own keys in a heartbeat rather than dig around in a sewer (and must love me, by the way), tried various combinations of garden implements and duct tape in an effort to retrieve them. While John was lying prone in the street, I tried to ignore the fact that his shirt, currently with arm sticking into the storm sewer, probably cost twice as much as my keys.

I finally convinced them to drive me home, so I could complain to my husband, whose job it is to retrieve my keys, how it was supposed to rain that night and the keys surely would have washed away by morning. I called my sister back to tell them Michael was on his way over armed with a serious flashlight, a pry bar for the manhole cover and a ten foot extension pole with a heavy duty magnet wired to it.

I am not sure if John (engineering student turned doctor and competitive by nature) had ever stopped his efforts, although I would hope by then that he had changed his shirt, but I would guess the news that Michael (raised on a large farm with "we can figure this out, why call someone else to do something we can do for ourselves" common sense) was on his way, made John redouble his efforts. Within two minutes of Michael leaving our house, the keys had been retrieved and already disinfected by my sister.

Since that night, I have been referring to my reserved brother-in-law as my hero. Just in case you should ever find yourself in this situation, the magic combination was a broom duct taped to a bent pond net with a wire hanger taped to the end. (Although I am sure that your heavy duty magnet idea would have worked too, honey.)

Next time, perhaps David and I should both stay home and watch a movie, although hopefully not under the dining room table.