I am a youngest child. I grew up forever feeling persecuted that my brother got to… stay up later/go places I wasn’t allowed/watch movies that were forbidden/fill in the blank with any other life-or-death-desirable activity in a kid’s mind. I never saw him with more responsibilities than I had—therefore earning those special privileges—though that, too, is probably a perception heavily shaped by its passage through tween/teen Not-Fair-Colored glasses.
Of course, there were also rules in our family that were shaped by “because he’s a boy” or “because you’re a girl.” Different time, different place. There are no such gender rules for my kids, but I am sensitive to the siren song of But He/She Doesn’t Have To (or Gets To) And That’s Not Fair, so I try REALLY REALLY HARD to explain any such apparent unfairness in a way that will make the complainant understand that maybe it’s not as awful as they think.
For all his rigidity, Monkey is actually a pretty easy sell on the “here’s why she gets to and you don’t” party train. He protests, I explain, he either backs down or sort of harumphs his way out of the conversation, saying that he SUPPOSES I know best. No, it’s Chickadee who is the frequent recipient of the Let Me Tell You With Very Many Words Why You Are Being A Spoiled Brat Right Now lecture.
“It’s not FAIR!” she’s prone to wailing. “Monkey doesn’t have to [fill in the blank with some household responsibility].” And each time I will patiently recount for her the benefits of being 1) older and 2) neurotypical. She gets to stay up later. She is allowed to watch movies and TV shows he is not. She has a slew of privileges he not only doesn’t have yet, he may not have at her age, either. She has more responsibilities because she can handle them, but she also has a lot more latitude in what she gets to do. Sometimes I even say to her that “being neurotypical has its perks” to point out the ways in which Monkey is not getting nearly as much as she thinks he is.
But mostly I say, “This is the curse and blessing of being the oldest.” And then I tell her, solemnly, “With great privilege comes great responsibility.” (Sometimes I add, “Now stop whining and go do the dishes,” just for effect.)
I still can’t wrap my head around the fact that it’s May, that school is almost over for the year, that yes, the last 4-5 months have blurred together into a congealed ball of stress and sickness and pain and overall suckage. Chickadee’s life—beginning with the first days of Mystery Illness 2012 back in January—is certainly nothing like what I’m sure she pictured for herself before she got sick.
Being sick sucks. Being a teenager sucks. Being a sick teenager is the extra double super suckage buffet of Not Fair, and over the last few months we have watched her slowly unravel. Her ability to cope went right out the window with her long-lost health, and because we didn’t have anything else to do between hospitalizations and doctors’ appointment (HAHAHAHAHA I AM FUNNY!), we desperately tried to address her emotional needs alongside the rest of it.
She has a great therapist. She started anti-depressants, too. Look, full-grown adults are brought to the edge of their ability to function when faced with chronic illness; no one seemed too surprised to learn that OH HEY, this kid is having a hard time.
Over time, “because you’re the oldest” and “because you’re neurotypical” has given way—much to her chagrin—to “because you’re sick” and “because you have a doctor’s appointment today.” Guess what that is? Why, it’s Not Fair, of course.
Medication helped, and then it didn’t. Therapy helped, and then she decided her therapist is dumb. (For the record: Our joke is that any doctor she has to see is granted only three appointments to FIX HER ENTIRELY before Chickie decides they are stupid and useless. We have an entire cadre of stupid, useless doctors on her team whom I adore.)
Something began to niggle in the back of my head. It was almost drowned out by the “I HATE YOU!”s, but not quite. I listened. I discussed it with Otto, and with Chickie’s dad.
We found another doctor. Chickadee only had to see him a couple of times (first for a preliminary and then for a day of testing), so there wasn’t enough time to decide she hated him.
“How’d it go?” I asked, after.
“Fine. I guess,” she said.
We waited six excruciating weeks for the report. Six weeks during which her health dipped again, her attitude tanked, and everything—EVERYTHING—was somehow my fault. “YOU’RE SUPPOSED TO BE TAKING CARE OF ME!” she screamed, one night. “DO SOMETHING!” The fact that I’m neither a doctor nor a wizard was beside the point.
Yesterday was a bad day. A really, really bad day. We’d spent all day on doctors’ appointments in Atlanta the day before, and I ended up having to pull her from school for most of a second day for emergency appointments here, too. The “do we need to hospitalize again” conversation came up more than once, and I could feel her fiery glare of hatred trying to sear a hole through my face as she sat curled in a ball, insisting that she was not going back to the hospital, she would not go, FIND ANOTHER ANSWER, I’M NOT DOING THAT. (Apparently the food at the hospital is awful. Who knew?)
While walking out of one appointment at Ye Olde Office Parkke (no, it’s not really called that, but I would pay good money for someone to name their office park that, extra letters and swoopy Es and all), I got a voicemail that her report was ready. And that doctor was in the same office park where we already were. So I walked over and picked it up.
These reports are written in Verbose, you know, which thankfully is a language in which I’m fluent. We sat in the car and I scanned page after page, looking for the pertinent bits.
And there it was. “Findings consistent with the typical presentation of Asperger Syndrome in highly intelligent females.” Page after page explaining the many ways in which my baby’s giant brain and desire to fit in have allowed her to “fake it” for all these years, and the current set of stressors have simply overwhelmed and dismantled the many adaptations she often didn’t even realize she was making.
“What does it say?” she said, scanning my face as I read, fearing the worst.
“It says you have Asperger’s,” I said. We sat there, air conditioning flipping random bits of our hair on end, looking at each other over the sheaf of papers. “What do you think about that?” I finally asked.
“I dunno,” she said. But she looked pretty unhappy.
“It also says you have superior intellect,” I offered, by way of consolation.
The corners of her mouth twitched, ever so slightly. “Well DUH,” she said. We grinned at each other.
It doesn’t change anything, of course. Except that it changes everything. And except that we can add “crushing guilt over my frequent usage of ‘because you’re neurotypical and he’s not!’ as parenting justification” to my list of baggage. Um. Oops?
Girls on the spectrum present REALLY differently than boys. And I’m not an expert. And it’s not at all unusual for girls to be diagnosed a lot later—or fly under the radar entirely—because it’s harder to “see.” So the guilt isn’t necessary, not really. Still. When have I passed up a change to beat myself up?
It’s changing how we approach some stuff. I know it’s too early to call, but she seemed relieved. This morning she was cheerful. I asked if she was feeling better and she said she really, really was.
While Monkey ate his breakfast, Chickie finished and was gathering up her things before going outside for the bus. The kids were bantering back and forth—I can’t even remember about what—but it may have been the first time I’ve seen them getting along in months. Monkey was soaking it up like the first sunny day of spring; he has lost so much in the wake of all of this, too, and his adoration for his sister never once wavered, no matter how mean she was to him.
“Hey Monkey,” I said, from where I was packing lunches over at the counter. “Guess what the doctor said Chickadee has!”
He was immediately intrigued. She, however, just rolled her eyes and smirked at me. “What??” demanded Monkey.
I cocked an eyebrow at my daughter, a tacit “so are you okay with this?” question which she understood and gave a slight nod to, in spite of her shiny new label.
“She has Asperger’s!” I told him, the same way I’d announce that we’d just won the lottery.
Monkey took a sharp, astonished intake of breath, while Chickadee rolled her eyes and waited to see what he’d say. She didn’t have to wait long.
“Really??” he squeaked. We nodded. “COOL!” he said. He ran to her and threw his arms around her and her backpack. “Don’t GO, Chickie! You should totally come to Hippie School with me!”
She chuckled. “Yeah, that sounds pretty good, but I think I’ll just go to my school today.” I’m pretty sure she even hugged him back, a little, before disentangling and heading outside.
So, yeah. It turns out I am the proud mama of TWO awesome Aspies. Who doesn’t love a matched set?