Caroline has Asperger’s Syndrome, a form of high functioning autism (HFA) that is probably going to be lumped together with other forms of HFA in the next edition of the big-honking-medical-text-where-they-catalog-the-nomenclature-of-such-things (DSM V). Whatever. Autism is a spectrum anyway, and describing it is difficult. It would be easy to let this post devolve into a discussion of what does and doesn’t work in treatments, and which classic Asperger’s symptoms Caroline does and does not have, but that would quickly turn into a conversation about autism. This post isn’t about autism. It’s about Caroline. Who has Asperger’s syndrome.
So to start out with, I will just say three things.
1) Caroline and Sam have both had ALL of their vaccinations. I don’t buy the whole autism-is-caused-by-vaccination bullshit, and the doctor who tried to “prove” it falsified his studies and has been roundly discredited by the journal that originally published his results.
2) We are treating the disorder with a variety of therapies, but we haven’t found medicines or diet changes necessary at this time. (Edit: Caroline now takes medication for her ADHD. Sam now takes a fuckton of medication for not-necessarily-autism-related behavioral issues.)
3) And finally, Caroline was born this way. (Cue Lady Gaga). I have known from the first time she tried to nurse that she probably had autism, though it’s only been recently that I could articulate how I knew that.
I’ll expand a little on that third point. I got the first two out of the way so I wouldn’t have to keep answering them later, but number three is pretty key to understanding who Caroline is and how she behaves. She passed all the newborn tests for hearing, vision, and such. But she could not latch when nursing. Where most new Moms who opted to breastfeed had the lactation consultant come in maybe two or three times until they and their babies caught on, I had that woman in my room for every single one of Caroline’s meals those first two days. And even she had a hell of a time getting her hooked up to the breast.
I blamed my volcano-sized boobs, but, really, the child just couldn’t suckle without a lot of help. There are tricks you can use, like tickling the roof of the baby’s mouth with your nipple, that ought to trigger a sucking reaction. They had only a limited effect on Caroline. If I could have had my way, we’d have bottle fed, because she understood that kind of nipple a little better. (And no, there wasn’t any nipple confusion. She struggled with those, too.) But, as I noted yesterday, I didn’t get a choice in the matter. She also had a weak grip. Most newborns have a surprisingly tight little fist, but Caroline’s hands stayed open when stroked, or, if she did curl her hand around one of our fingers, she did it delicately, gently, like she didn’t want to hurt us. Or like she didn’t know how to grasp harder.
As she grew, she hated tummy time, and she didn’t babble like most babies. The tummy time just made her mad, and she wasn’t without sounds. They were just rare or, as she got bigger, echoes of what we said to her. I tried to explain that I thought she was autistic, but everyone brushed me off, including her doctor at the time. They saw her hitting enough of the milestones and said “Every baby develops differently.” But then she didn’t sit up until 8 months old. And she didn’t crawl ever. She just scooted around on her bottom with this one little leg stuck out like an outrigger. (Of course, I did that, too, as a baby, skipping from nothing to scooting to running with no crawl or walk in between.) She didn’t walk until 18 months old, and she was three years old before her conversations made much sense. She had language before then, but it was an odd collection of echoed phrases and words well outside the vocabularies of other kids her age.
She would tell us strange little sentences that ended in an upward lilt. “Caroline, would you like a cookie?” she’d say, or “Caroline want a cookie?” instead of “Can I have a cookie?”. Or, one of my favorites, she’d scoot, and later walk, through the house chanting “duck duck duck duck duck” just under her breath. My husband and I are both train nuts, and she latched onto our adoration of all things rail related very early on (though all TV shows, including train ones, terrified her until around the age of two). Her odd linguistic development meant Caroline didn’t say “I love you” until she was nearly three and a half. Instead, because we all loved trains, and read her train books, and sang her train songs, she used train words to say “love”. She would gaze at us in adoration and murmur “trestle”. And I wouldn’t trade one of those “trestles” for an “I love you”. Scott and I knew what she meant, and we loved that she had a unique way to express it.
Her language came in quite suddenly a few months after her third birthday. It was actually my birthday in 2006, and my Mom and niece, Kaylee were visiting us. Kaylee is a chatterbox, so she was yakking up a storm in the back seat when suddenly there was this explosion of language from the other side of the car, and it was Caroline speaking. She had started occupational therapy not that long before, and she had apparently just then made the idea-to-voice-box connection.
I was so shocked that I backed out of the garage into my mother’s parked car.
I don’t remember what Caroline said, but it was related to what Kaylee was talking about, and, more importantly, we all knew what she meant. And she hasn’t stopped talking since. Given half a chance, she narrates (sometimes sings) her life to us, one event at a time. (Although she has only recently developed real answers for abstract questions like “How was your day?”) On a trip to the grocery store, we once endured some 30 odd verses of a tune I’ll call “The Publix Song” that went something like this:
We are going to the store
The store is Puuublix
And we are driving in the car
And we just went over the big road
And the other big road
And now we are at a stop light
(The store is Puuuublix)…
Seriously – she had a verse for the cart, and the doors, and for every food we picked out, with random emissions of “The store is Puuuublix” interspersed throughout. Finally, when we were all just about to lose our minds, Scott poked a piece of candy in her mouth, and she had to stop singing to chew. The silence was measurable on the way home, as Scott drove and I kept shoving candy at both children.
Besides literally helping her find her voice, therapy did other things for Caroline. It helped her deal with her classmates, and it helped her display her developing skills as her preschool teachers tried to test her. Before therapy, her little report cards would all say “can but won’t” next to at least four or five skills, because she didn’t understand what was being asked of her, and her teacher couldn’t see why she wouldn’t replicate a skill she had clearly demonstrated the day (or even an hour) before without prompting. Therapy helped her interpret other people’s words and actions. She no longer clamped her hands over her ears and cowered when in large groups of children, and her teachers (all awesome people) learned quickly how to help her through meltdowns. Her preschool director at Gan Shalom would sit in the hall and cuddle her to calm her. They were that good.
Because she was so loving and outgoing, she never suffered the ostracism that other children in her position often undergo. Autism so often drives children inward, but never my duck. Caroline loves the world, and it’s just impossible not to adore her back. Aside from “ducks” which is what we call her from the years of listening to “duck duck duck duck duck duck”, her other nicknames are “Sunshine” and “Sweet Girl”, because she greets nearly everyone with a hug and a grin. Those who have only recently met her (and some who know her quite well!) tell us “I’d have never guessed she was autistic!” because they aren’t used to interacting with those on the high functioning end of the spectrum. And Caroline is definitely high functioning. She’s bright, creative, and sweet.
Her preschool classmates would forgive so much because of that. She would go around stealing all the toys, not precisely snatching them, just gently removing them from her friends’ hands announcing “I have that”, and when the teacher would look around to see the small baffled faces, Caroline would present all of her trophies as if she had just done the room a favor. Or Caroline would see a friend enjoying some computer time, and she would come up behind to watch. Then, after she’d been standing there awhile, she’d sit down to watch. In the same chair as the other child. Who would have to scoot over to make room. Once she had half the chair, Caroline, who had no concept of personal space, would start gently oozing over, moving the other child out of the way until eventually the other child was standing watching Caroline on the computer, not quite sure what had just gone wrong. But Caroline would smile so lovingly that the other child would decide Caroline’s turn must have come up, and nobody stayed mad at her.
She identified (and still identifies) with the world through music, and “The Publix Song” is just one of the little ditties she’s written all by herself. Her first song was something about a blue boat. We found out she had written it when we heard her singing it at home and asked her teacher for the rest of the words, only to find out the teacher wanted to get them from us. Her second song, which she still sometimes sings went:
Ten toes, sticky-ticky-ticky-ticky-ticky-ticky-ticky-ticky fingers
Ten toes sticky-ticky-ticky-ticky-ticky-ticky-ticky-ticky hands.
Hello sticky-ticky-ticky-ticky-ticky-ticky-ticky-ticky fingers.
Goodbye sticky-ticky-ticky-ticky-ticky-ticky-ticky-ticky hands.
It was a hand washing song, and, since hand washing was a real trigger for her meltdowns, we were grateful when she developed the song to help her get through. For that matter, I navigated her infancy and toddler years by having a song for everything, because the only time she seemed to hear me was when I was singing. (It helped that my own Mom has a song for everything, as well.) Returning to the car from just about anywhere, we would sing:
You have to hold hands in the parking lot,
the parking lot, the parking lot.
You have to hold hands in the parking lot,
even though you’re a toddler
At the end of a bath came (this one was my Mom’s):
Bye Bye water
Bye bye water water
Bye bye water,
we’ll see you the next time
to reduce the trauma of draining the tub.
In therapy, in school, and at home, Caroline has never made little-progress. Instead, she rams up against the wall of misunderstanding until it suddenly gives way before her and she makes great-leaps-forward. And most of those leaps have come in the context of songs. Right around the time she figured out how to read out loud, she started shouting all speed limit signs out to me. To hush her, I explained “Speed limit signs tell us how fast we should drive. If we go too slow or too fast, we might get a ticket. And not like a ticket to a museum, but one that says ‘you have to pay the government some money’”.
She thought about this in a silence for a few minutes, then said to me, “So driving the speed limit is like going ‘moderato’, right?”
Ga-DUNG. “Yes.” Good lord. I knew she loved little Einsteins and the advanced music program at her school, but that was a bit much.
Then, she continued, “Does that mean that ‘adagio’ would be going too slowly and ‘allegro’ would be going too fast?”
Gulp. “Yes,” I squeaked at her.
Because she’s smart like that, and it flattens me every time she just pops out with one of those profound observations. And it’s always going to be that way with her. I wouldn’t change her, even if Asperger’s could be “cured”. I understand and respect how families of children and adults suffering from profound autism want a cure, but we’re lucky enough not to be in that boat. Asperger’s has thrown some odd wrenches into Caroline’s life, but it’s very much a part of the sunny little person she is. She’s seven now, and attending a private school geared towards kids with HFA and ADHD. She adores her classmates and teachers, who all love her back. They work with her through tough days and meltdowns and all agree with Scott and I that the world is a better place for her being in it just exactly as she is.