Was It a Bad Day?

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.

Leo Lego Creator

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.

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  1. I love the way you manage to see the good in even a stressful, agonizing day. You're really an inspiration.

    Poor Leelo, sitting in a puddle nude! No fun. If it had been Jaymes, bystanders would have thought feces throwing monkeys had taken over the stranded bus.

  2. Anonymous5:57 AM

    I love this post. And while it was, indeed, a "good" day, I am sending you a hug anyway, because seriously, anyone who has the presence of mind to handle such a day with grace and aplomb deserves--at the very least--a hug, but even better, a good stiff drink. (Kudos to Leelo, too!!)

  3. Anonymous7:58 AM

    Should I think you are an amazing person or...

    Should I think you are an amazing person!?

    with utmost respect & admiration, Jersey Girl

  4. This is a fantastic post, and a real eye-opener for me. I've definitely been thinking the worst of everything lately, and it was good for me to read this and realize that yes, I am making a choice to think about things that way. Thank you for this.

  5. I feel like I "should" be thinking more...? Thank you for the wonderful post.

  6. Anonymous8:58 AM

    Leelo is really coping great lately.
    Poor boy on the bus.
    Makes you feel so bad for him.
    So, mom sounds like you need a glass of wine. Hope you had one!

  7. Super post. I do my best to look on the good side of stuff, but sometimes it is just tough.
    Did you ever get my email on meds or do I need to resend it to another email?

  8. This was beautifully written.

    Leelo is an amazing lovable boy whose skills will continue to blow your mind.

  9. Anonymous3:24 PM

    Wow. You really knocked it out of the park with this post. Amazing writing and a lot of inspiration. Thank you for sharing!

  10. Thanks for the reminder! I'm having a bit of a black day today but I should remember that my son is just two and learning to assert himself!

    (Eeep! I've been reading your blog for, literally, years and it's my absolute favourite. Thanks for making my day and giving me a different perspective on life and parenting so often!)

  11. Thanks for such kind words, All. But know that I am only able to keep my mind and cheerfulness together on days in which I get at least a small break. I almost completely lost it in late August when all the kids were out of school at the same time, and couldn't have defined optimism if you handed me a dictionary.

  12. Anonymous2:06 PM

    Thank you for this post. I can't help but think of it as a correction of sorts to that "signature" interview in the fuckumentary Autism Every Day in which the parent says something to the effect of "There are no good days -- just days that haven't yet turned bad"

    And FWIW, I believe that it's OK to allow both kinds of thoughts to be true, as long as they stay balanced -- that honoring the negative and the positive, the yin and the yang, is what can keep us sane. YMMV.

    Love to Leelo, and to you all, for making it through a challenging day with grace and without any smeared shit. I've long since lost any shock or shame over urine or nudity, but the shit can still bring me down.


  13. Anonymous2:10 PM

    I enjoyed this entry on many levels. Sometimes, the only difference in how I take the bad is whether or not I'm premenstrual. Isn't that sad?

  14. this is the kind of thinking I should try to more of.

    to you and Leelo too.

    and WTF is it with all of the laundry issues lately?

  15. Anonymous2:36 AM

    Thank you. This is a fantastic post and a good reminder to focus on the positive. It can be much easier to think about the negative, but the happy thoughts are worth the fight.

  16. Did you get my email about our ongoing experiences with Abilify? Would love to chat with you about it.

  17. a supplement called GABA is working wonders for my G right now. A newly prescribed PAXIL in addition to the regular Risperdal has turned into a star pupil his first week back at school . Who knew. Email me if you want details. They say Paxil helps increase bloodflow to the temporal lobe.

  18. I would say that was a great day. My son is Atypical Autistic. I always look at the positives. When he doesnt have an accident I praise him. As far as the aggression goes, he hasn't had any for almost a year. His doctor put him on Risperdal. Huge difference. I love reading about Leo. Him and my son are so similar. The iPad apps are really helping Ray. Thank you. God Bless you. Ronda

  19. That is a great way to look at your day. Yes, some days it's hard to see the sunshine because of all the clouds looming. But sometimes those clouds are much easier on the eyes.
    Look forward to reading more!!


Respectful disagreement encouraged.