When it comes to decision-making, I am usually an unemotional person. My sister describes it as my “tink-tink” factor — my logical mind makes most of my decisions, not my steel heart. Much of my decision-making reduces to this quote from Forgetting Sarah Marshall: “When life give you lemons, just say fuck those lemons and bail.”
When my daughter —
who will henceforth be called Linny, after her favorite Wonder Pets character, because I’m sick of typing “my daughter” and with the mess her waist-length hair was this morning, she pretty much looked like a (really cute) guinea pig
— was diagnosed with autism, my immediate reaction wasn’t heartache or disappointment or sadness. It was almost clinical. Okay. This is happening. Let’s research.
So, I devoured every word I could find about autism. I plowed through articles, blogs, books, handouts and websites with a surgical precision, separating the fact from the fiction, the science from the wishful thinking, the method from the madness. I sat through that first IEP meeting wearing my lawyer hat, not my mom hat. Fuck these lemons.
Of course, I know why I do this. It’s a self-defense mechanism.
It gives me a false sense of security and control. It makes me feel like I am doing something about a situation that is completely beyond my ability to change. When I met with Linny’s social worker right after the diagnosis, and the social worker asked me how I was handling the diagnosis, I matter-of-factly responded that I didn’t see how it was about me. I knew why she looked puzzled and concerned; I just ignored it. Fuck these lemons.
It also protects me against guilt. I knew something wasn’t right for Linny. In September 2010, before Linny was diagnosed, I went out-of-state to visit some family. One of my cousins has a daughter (G) who is a few weeks older than Linny. (At that time, they were three years old). While I was at their house, I baked some banana bread. G came into the kitchen while I was gathering ingredients, shoved a stepstool next to me, climbed up and said (clear as day), “Can I help you?” She helped me crack eggs, measure flour and mix the dough.
When we finished, I hid in their bathroom and quietly cried. If someone asked right then why I was crying, I would’ve said I didn’t know, and that would have been the truth. But my heart — that mother’s intuition part of me — it knew what my mind couldn’t or wouldn’t acknowledge: most three-year-olds have the motor skills to slide stepstools and climb up on them; most three-year-olds speak in clear words and phrases that include verbs; most three-year-olds have the manual dexterity to push a spoon around a bowl; some three-year-olds can even follow directions involving more than one command. My three-year-old could not do any of these things.
So, when Linny was officially diagnosed with autism, my clinical approach to the situation let me stifle the horrible guilt about not trusting my instincts and acting sooner, for deluding myself into believing that there was just something wrong with the anatomy of her mouth that was causing a speech impediment. Fuck these lemons.
After the diagnosis, the armor began cracking. I would have small bouts of sadness: the Facebook posts about other people’s same-aged children hitting milestones and expressing feelings Linny hasn’t or can’t; the photographs of t-ball games, ballet recitals, and field trips that would not be. I would violently push them away, chiding myself for thinking something less than positive about Linny, as if I was being disloyal. Fuck these lemons.
It wasn’t until this morning — 1 year and 2 months since Linny was diagnosed — that the sadness and anger finally, truly hit me — like a fully-loaded sixteen-wheeler at 65 miles per hour, coming at me head on. And, it was the mother of all truck wrecks.
As I’ve mentioned, Linny goes to school everyday at a local elementary school that has an autism-specific classroom. She’s not all that happy about it. Some of her resistance I understand as her expression of a preference to stay home in the comfort of her familiar surroundings, kickin’ it in her PJs, watching the same episode of Wonder Pets over and over again. I mean, who doesn’t want that? Some of it, though, seemed off to me. Once again, instead of listening to that mother-intuition-buzzer going off in the back of my mind like a buzzsaw boring down on an oak tree, I went all clinical. She needs to go to school. This is important. If I cave in and let her stay home this time, it will be only worse next time.
Fuck these lemons.
Yesterday, though, Linny objected so profusely to going to school that I was a good hour late getting her there. (This, as you can imagine, so endears me to her teacher, who cannot manage, despite a Master’s degree in special education, sympathy for the challenge of getting Linny up and out of the house and to school by 8:15 every morning.) Linny was not full-on crying when I dropped her off, but she was doing this quiet whimpering/muttering thing, and her eyes were teary.
When we got to her classroom, Linny’s usual classmates were there, as were two of Linny’s regular classroom aides. However, there were also two new teachers, because Linny’s regular teacher was out sick. Still, Linny hung up her backpack and walked into the room. She even said goodbye to me.
Thirty minutes later, my husband called me at work. Linny threw up in class, and the school asked him to come pick her up. No one offered an explanation. When my husband arrived at the school office, the first thing Linny said to him was, “I sorry, Papa.” She was standing there in the office, wearing socks but no shoes, a pair of cut-off sweat pants, with a shirt covered in barf.
Fuck those lemons!
If you have a child on the spectrum, I don’t have to explain the very low likelihood that Linny apologized to her father because she threw up (which by that time had happened at least 20 minutes earlier) or because she suddenly, magically comprehended that it would be polite to apologize for interrupting Papa’s workday. My money is on her apology being directly related to something some clueless, insensitive adult said to her shortly before Papa even got there.
I sat on the other end of the phone, feeling my blood boil. I literally could not concentrate on work for the rest of the day. One of my credit card companies made the horrible mistake of calling me at work to ask why my payment was late. (I’ve got some other shit on my mind, okay?) I am pretty sure that lady is now the proud owner of a new asshole.
I laid in bed for an hour last night, dreading this morning. At 11:30 p.m., I gave up and took two sleeping pills.
Fast forward to 8:40 this morning. Linny is again whimpering/muttering in the backseat of my car as we drive to school. We park. Just as I get her out of the car, the landscape guys working at the house across the street simultaneously started a lawn mower and a leaf blower. Core meltdown ensues, and Linny bolts away from me. It is only by the grace of some celestial being that she bolted toward the school and not into the street, which is only about twenty feet away.
By the time she and I get into the office where I have to sign her in, Linny is sobbing. This is not the crying of a kid who is not getting her way. This is the sobbing of a kid who has just been terrorized. I’m trying to calm her while the attendance secretary signs her in. I then hear the attendance secretary ask the receptionist, “What room are we putting *these kids* in today?”
What. The. Holy. Hell.
I ask the attendance secretary if I’ve heard her right. I ask her what she means. She tells me that because the regular teacher is still absent, they’ve split the kids usually in Linny’s classroom into different rooms with different teachers.
I want to take a moment to say that this is where the clinical side of me sometimes saves my ass. Because, instead of ripping this woman’s head off, I said, “Listen. I don’t know how much you know about autism, but routine and consistency are very important for ‘these kids.’ It’s really not a good idea to move them to a room with which they aren’t familiar.” While she “agreed” with me, her next sentence was this, “But, she’ll be with the other kids from her class.”
BAM! My whole world went red. Linny spends an hour a week in a social skills class because her greatest limitation is her inability to interact with her peers, she is entirely dependent on an adult she trusts to communicate her needs, but I should’ve been okay with her spending five hours in an unfamiliar classroom, with unfamiliar adults and unfamiliar routines because – hey – she’ll be with her “friends”?!?!? These are the people I leave my daughter with each day?
I honestly don’t remember what I said to the attendance secretary next, except that I’m sure it wouldn’t be recounted as “polite.” It was like I had some bizarre out-of-body experience, because before I knew it, Linny and I were in the driveway at home. Linny kept saying, “Home. Home. Home.” as we walked up the driveway and through the garage. I swear to you, if that kid was wearing ruby-red slippers at that moment, she would’ve been clicking her heels together like a river dancer on St. Patrick’s Day.
I left Linny at home with her dad and cried all the way to work. The tectonic plates of my life shifted this morning, and now I’m suddenly, finally feeling what all this means — not just for Linny but for me, for her brother, for my husband, for our marriage, for our future.
All the logical reasons for me to be here at work, sitting at this desk, pushing around paper — income, health insurance, connections — they all of a sudden stopped making any sense. My heart hurts. My head hurts. My priorities are tumbling around like a load of socks in the dryer. It’s as though I realized this morning that the logical “choices” I thought I was making weren’t really choices at all.
I want so badly to say “fuck those lemons” and bail, but what things are the lemons? From where am I bailing?
I wanted this post to have some kind of neat, tidy, happy ending. The best I can do is acknowledge that the hand of karma finally reached down and smacked me upside the heart so that I’d wake the hell up and actually start using it. Now, I just need to figure out how.