Yesterday Leelo awoke with a shriek at 5:30 AM, rocketing me out of bed and down the hall to his room.
Should I have thought, "Damn it, I was up working past midnight," or "Hurray, Leelo was clean and dry, and I'm so lucky Seymour and I trade off so that I don't have to wake this early every morning"?
Leelo used the toilet, got himself dressed, and helped me do some laundry.
Should I have thought, "I do at least two loads a day and it doesn't make a dent and some day they will find my body buried under a mountain of dirty clothes," or "I'm amazed at all these things Leelo can do, he is getting so independent and helpful"?
It was still only 6 AM, so we drove down the hill to get a donut for Leelo and coffee for me and Seymour.
Should I have thought, "If Leelo wasn't bolting so much right now, we could have gone for a neighborhood walk and watched the sun rise over the Bay," or "I am so lucky to live in a city with a drive-through coffee bar that is open this early"?
We arrived home and found Seymour sitting on the stairs waiting for us. I passed Leelo off to him and went upstairs for my bath and a few pages of weirdly wonderful Un Lun Dun, then went back downstairs to co-finish up getting the three kids ready and out the door. I drove the two girls to their two schools, and brought Leelo back home to wait for his bus.
Should I have thought, "Why can't at least two of my kids go to the same school?" or "How convenient that we have no school drop-off conflicts, and how great that a bus comes right to my door so that I don't have to drive Leelo to his school twenty miles away"?
Then I busily researched my bank records, as Mali's school staff had informed me during dropoff that they couldn't find record of our payment for this school year. After a few minutes of "What-if-I-didn't?" panicking over having to pull Mali out of the not-inexpensive preschool I thought I'd pre-paid so as to get a discount, and which our current finances would not re-accommodate, I found both a copy of the check and the statement proving it had been cashed. IN DECEMBER 2007.
Should I have thought, "How could someone lose track of a check that large?" or "Even though much of my life is chaos, at least I have a rudimentary filing system for our finances and can find everything quickly in an emergency, and thank heavens I don't have to go back to the co-op nursery school salt mines"?
A bit later, Leelo's neurologist called, in response to a call I'd put in earlier that morning asking if she was the right person to talk to about Leelo and his aggression and meds. She said she was willing to try putting Leelo on Abilify.
Should I have thought, "Hell no, that is a more intense drug than we'd like to start with, plus we have relatives who developed tardive dyskinesia from similar psych meds," or "I'm so glad Leelo has a pediatric neurologist who responds to queries so quickly"?
I spent the morning editing and re-editing and re-editing.
Should I have thought, "Why do I ever try to do real writing when the process is so painful?" or "I am so excited about getting a story published in a for-real book!"
Then it was time to pick up Mali, and Iz, and bring our eldest home for her Spanish lesson. As Iz demonstrated her ability to whine bilingually, I got a call from Leelo's bus dispatcher. Leelo's bus, with its eleven special needs children, had broken down on the freeway just south of his school. By the time backup busses arrived to transfer the children and take them home, Leelo's body had given up and he had had an accident. So of course he immediately took off all of his wet clothes. The bus drivers are accommodating people, but they could not put Leo on another bus while he was nude. Could I come get him?
Should I have thought, "This is blowing the busiest afternoon of our week out of the water! What would they do if I wasn't available?" or "At least I'm available to pick him up ASAP, and so is Seymour if need be."
I spent the entire drive there unsuccessfully trying not to cry about how freaked out Leelo might be, and trying not to think about a panicking Leelo turning the bus into a poop-strewn monkey pit. And panicking myself due to nasty rush-hour traffic that never let me drive faster than 40 MPH.
I pulled up behind the bus, which was on the shoulder of a very busy exit, and hopped on to find Leelo sitting beatifically in a puddle rather than a pile. I quickly dressed him in the clothes I keep in my car, apologizing all the while to the bus driver for her inconvenience. She said not to worry, she has been working with kids like Leo for years, nothing surprises her, and the cleanup did not bother her. She also said that she's never had a problem with Leelo before and knew that these were not typical circumstances.
Should I have thought, "I can't believe this fucking happened," or "This isn't Leelo's most dignified hour, but he is just fine, and so is his very kind bus driver"?
I whisked the kids to Leelo's favorite restaurant for a naan bread treat. Mali fell asleep on the way there and was very whiny when I woke her up for dinner. The waiter swiftly distracted her and Iz with some pink lemonade, but her moaning upset Leelo and he tossed off some loud vocalizations, then banged on the table once or twice. Overall, though, he was a very good boy and played calmly with activities even when nearby diners were loud.
Should I have thought, "Going out to dinner with an autistic child and a preschooler can be so difficult," or "Leelo is amazing. On a good day he will calmly play through an entire meal, as long as I bring activities for him."
We then dropped Iz at a local school for soccer practice. Leelo played on the playground nicely for a bit -- but after a few minutes told me that he "had to go poo-poo." There were no unlocked facilities at the school so I told him we'd have to go home. And he held it, for the walk off the field and the fifteen minute drive home.
Should I have thought, "What kind of people organize soccer practice for ten teams on a field with no toilet facilities?" or "I can't believe Leelo was able to avoid an accident when I asked him to. He is really making progress with his toileting."
He was a good boy for the rest of the evening, for me, and for Seymour who kindly took over most of the bedtime bathing while I soothed myself out of shell-shock with more laundry.
Leelo fell asleep immediately due to his long and exciting day, but the girls as usual decided that sleep is for the weak. Seymour took on the protracted task of enforcing their bedtime while I went downstairs to work some more, and handle correspondence.
I found an email from Supervisor M in my inbox, in which she kindly but firmly stated that we have not actually tried all the behavioral methods she recommended for dealing with Leelo's aggression and anxiety, and that we need to implement full-scale visual schedules at home. She suggested I go to his school for an observation, so I could witness the magic of Leelo and visual schedules.
Should I have thought, "I do not have the mental bandwidth to use visual schedules for Leelo all day long, it will take over every last interstice of my life," or "Leelo is so fortunate to have a program supervisor who is also his dedicated advocate, who never stops fighting for or supporting him. I will redouble my efforts"
Afterwards I watched about five minutes of crappy TV before falling asleep on the couch. I had no more thoughts, theoretical or otherwise.
As you may have guessed, I entertained each and every "Should I?" above. Should I have told myself that I was having a nasty, black day indeed?
I could have. But I chose to focus on the positive, especially where Leelo was concerned. He could have had a fuss on the bus, at the restaurant, and at the park, could have caused a lot of hardship for himself, me, and his driver--but he didn't (except the inconvenience of stripping).
I am proud of the way my son handled himself yesterday. I should remember it as a GOOD day.