It is a long-standing inside joke in the autism community that the movie Groundhog Day is a literal interpretation of our lives. Routine is the backbone of a healthy autism household so we parents have learned to adapt. It works most of the time.
School days begin with me waking Caleb at precisely 7:30 AM. Actually, I don’t wake him because he prefers to have two of his favorite rubber ducks knock at his door (if you think their orange rubber bills don’t leave a mark on a painted door, think again, and don’t try this at home). They knock in a specific composition that resembles “Skunk in the Barnyard, Pee Yew.” I have no idea how this started. Then I open the door.
Caleb sits up, grabs his iTouch and searches for the Classic Duck ringtone. He then motions for both ducks and holds them in one hand while they look at the iTouch as the tone rings out, almost like they are communicating with the Mother Ship. I know how this sounds. I know.
I retrieve the ducks, ask Caleb to put his pajamas in the hamper and proceed to his bathroom. Caleb has serious balance challenges, so while he’s changing, I put down an anti-slip mat that needs to be hung-dry every day or it grows mold. I start the shower then begin his hygiene for the day. I won’t go into all detail, but this involves everything from head to toe. Caleb can perform some personal care functions but not as thoroughly as an 18 year-old needs to have them completed. I shave his face (and cry every time I cut him), wash his hair, brush his teeth—you get the gist. The two favorite ducks accompany him into the shower, standing guard at the top of the shower organizer, in what he calls their stroller.
At 7:45, a different duck knocks on the shower curtain to tell Caleb it’s time to get out. This makes him laugh and turn off the water. While I’m drying him off (people with autism often can’t understand how to dry themselves off completely) the ducks take watch on the counter. I finish the after-shower hygiene (including a body spray because Caleb has girls to impress) and send him to his room to get dressed.
During this time he will ask me, every morning if he can bring The Brave Little Toaster to school for their Friday movie day. The answer always has to be, “(Your parapro) says that’s for babies.” Then he asks if he can bring Toy Story 3. The answer always has to be “That makes (your teacher) cry.” This makes him laugh too.
To help Caleb dress himself, I installed a closet organizer with clothes divided by short and long-sleeved shirts. I tell him which length he will need and he takes great pride in knowing into which side of the closet to reach. With modifications such as drawstring waists and an infinite variety of t-shirts, including custom 2 XL Disney shirts which are his favorite, Caleb is able to dress himself. Lock Laces (www.locklaces.com) allow him to put on his own tennis shoes. Tying them will likely never be an option, so this amazing invention, originally created for runners, gives him a boost in independence.
By 7:50 we are downstairs and ready for the second part of getting ready. I set him up with a DVR-recorded episode of Sid the Science Kid while I hand him a water bottle and get his morning medications ready. Caleb can’t swallow pills so I crush them and put them in a shot glass of chocolate milk. With another nod to the temperature regulation issues, Caleb needs four ounces of chocolate milk and four ounces of orange juice in addition to the water, so he arrives at school well-hydrated. Prior to this, I would load him up with a sugar free sports drink, until it began rotting his teeth because it is 11 times more acidic than soda.
We were blessed with the world’s best bus driver for almost two years, until he had to retire a little over a month ago. Caleb and I miss him every day. Not only is this man kind, respectful, warm and loving, he also has a military background and you could time his arrival to the minute.
The same cannot be said for his replacement, which brings me to the evil twin of Groundhog Day: any change in routine.
As cloying and exhausting as it can be to submit to a rigid routine, it is horribly chaotic when that routine is disrupted. The new bus driver’s arrival varies from almost on-time to over 30 minutes late. With our former bus driver, Caleb never was able to watch an entire show and that was fine with him. When he would hear this distinctive whoosh of the bus’s air brakes, he would often stand, smiling already and say, “Oh, you gotta be kidding me,” then dance out to the bus, to the delight of both the bus driver and his angel of an aide.
This morning my friend insomnia woke me around 4:00. I decided to take advantage of this by getting a workout in early. This is not as simple as it sounds. It’s not part of the routine, and if Caleb is woken by this, he will come downstairs, eyes reddened from being disturbed while sleeping and say, “Not tomorrow.” So I was stepping as lightly as I could, missing half the instructions on the workout video because the volume was on level two, when the phone rang at 6:30. Caleb’s angel bus aide was calling to tell me that the new bus driver called out sick, and she had no idea when they would be arriving today.
With a typical kid, I would keep to the regular schedule and drive him to school. Caleb, like many kids with special needs, lives for the bus. If he has a doctor’s appointment, I have to schedule it so he still gets his two bus rides in or it will not be a good appointment. So this morning, I had to push everything back in an effort to keep Caleb from knowing the bus was late. “Late” is one of his least favorite words and the few times I have used it have launched a tirade of “no late tomorrow,” “I don’t like late,” and “late go home.”.
Alas, Caleb came down, said, “Not tomorrow” when he saw me exercising and needed to know when he was getting in the shower. I resorted to “soon” and pushed the whole routine back to 8:00, hoping the bus’s arrival would cooperate. His science show ended and he stood and said, “Where’s bus?” I said, “Soon” again, and, thank God, it did arrive within a few minutes. The axis of Caleb’s world fell back into place.
So which is worse, the drudgery of Groundhog Day or scrambling to fix unpredictable routines? This round goes to Groundhog Day and serves as a humbling reminder of why we live the way we do. Routine makes Caleb feel safe and secure and gives him control in a world that must feel constantly out of control for him.
That is all that really matters.