Take cover

My daughter, G., gets upset whenever she doesn't understand something. It never occurs to her that it does make sense and that she'll understand it someday. She just gets mad at the rest of us for being "so weird"; she's the standard edition. My son knows it's not the world that appears weird; his life is harder.

"Dealing with an autistic meltdown is like dealing with a tornado. Once you are close enough to see it coming, there's nothing to do but weather the storm. Unlike a child having a temper tantrum, Jacob doesn't care if his behavior is making me react. He doesn't make sure he's not hurting himself. He isn't doing it in order to get something. In fact, he's not in control of himself at all. And unlike when he was four or five, I am not big enough to control him anymore" (The words of "Emma" in Jodi Picoult's House Rules).

I've had psychologists tell me that if I keep a log of everything that happens (I think she actually said "everything you do") right before K. melts down, that I will be able to determine, and hence prevent, all of his triggers. Ha. I'd have to live beside his ear because a trigger could be a peer's taunting whisper. I'd have to be able to read his mind, because a trigger could be a thought--a misinterpretation of what's happening around him. Like when the teacher used reverse psychology: "Class, let's make a list all the things we could do to make this course as miserable as possible" and K. thought she actually meant to implement it!

I told my mom about K.'s rough week at school. He thrashes and throws, and when it's over, he doesn't remember what happened, and when you ask what upset him and why, he doesn't have a clue. "It's like a seizure." My mom said that's exactly what she thought about my brother when he was little. One minute he's kicking dust and punching walls, the next he's quietly pushing a truck back and forth or asking for a drink.

It used to freak me out, like don't you care about what you just put my through? Now that K.'s older and more socially aware, I know he does; I can see the remorse, the despair on his face when he realizes what he broke or who he's frightened.

The psychiatrist in House Rules explains, "Kids with Asperger's are very bright and verbal and crave social acceptance...they just don't know how to get it." That's what makes it harder: you want to fit in, but you know you can't, the pain of rejection makes you lose it, which makes you fit in less, which hurts all the more. And round and round we go. It's the anxiety and frustration of living with an autism disorder, more than the disorder itself, that causes the most pain. If the rest of us were autistic, or hey, even if we understood what that feels like, autism would be just a difference, rather than a disadvantage.

I don't know exactly what my kids need. I can make separate dishes without sauces or spices. I can buy them three pairs of the same pants because they are the only ones that "feel good." But I can't make the world seem less "weird." I can't predict every trigger or stop every tornado.

I can make home a safe shelter for tornado victims. That includes all of us.

pdd-not otherwise significant?

I talked to two medical professionals this week: a Health Links nurse and a walk-in doctor. Neither one had heard of pdd-nos or pervasive developmental disorder-not otherwise specified. I could understand if they didn't know what ttyl, rotfl, or byob stand for, but isn't it their job to be up on common medical terms?

I had thought of getting medic-alert bracelets--great if kids are hurt, so the first responders know about their medications and understand their unusual behaviours, in case you aren't there to explain it. But if the paramedics reading the bracelet have never heard of pdd-nos either, what good would it do?

Pdd-nos is a catch-all term for verbal individuals who struggle with social reciprocity (making eye contact, reading facial expressions, initiating conversation, or playing interactively), and who may demonstrate rigidity (inflexible routines or rituals), and have sensory issues (sensitivities to loud noise, flashing lights, tags in clothing, texture of foods, etc.). In other words, people with pdd-nos have symptoms of an autism spectrum disorder, but don't perfectly fit all the criteria of any particular ASD diagnosis, such as Asperger's or Autism. Hence the -nos--"not otherwise specified."

Kids with pdd-nos fall all over the spectrum, in terms of IQ and social skills. They may be more, or less, severe than Aspies; Asperger's just requires the presence of additional symptoms, such as an obsessive interest in an unusual topic (like weather patterns--think "Cloudy with a Chance of Meatballs"). We're sure K. has Asperger's (our obsessive interests have spanned photosynthesis, pipe organs, dirigibles, and Star Wars), but at the time he was diagnosed (age 6) the psychiatrist told us that he didn't give the Asperger's diagnosis until kids were older. So in the meantime, the official word is pdd-nos, which, it turns out, is a meaningless one!

Where were you on the night Orville Redenbacher disappeared?

Under the bright lights, in a small room, late last night, this is how it went down:

G: K., want some popcorn?
K: No thank you.
G: I'll save you some, just in case.
K: It's okay. I don't want any.
G: I'll leave the bag right in front of you, in case you change your mind.
K: (pushing it away) I don't want the bag. I'm eating oatmeal.
G: But you might change your mind.
K: I won't change my mind.
Me: G., leave him alone. He doesn't want popcorn.
G: But he might change his mind.
Me: He's not going to change his mind. Don't ask him again.
G: Why not? That doesn't make any sense. I change my mind!
K: G.! Stop it!
Me: Leave him alone.
G: (Becoming agitated) That's too weird! Why can't he change his mind? Everybody else does!
Me: You're getting on his nerves. Just stop talking about it.
G: (in a whisper) I'll just hold this last popcorn kernel in my hand and save it, in case he changes his mind.
K: Aaaah!

There was nothing left for K. to do but leave the room so she knew that he was serious. I say: good for him for staying under control. Anyone would have been tempted to deck her, or alternately, hire her as an interrogation specialist. Her persistence could shake the cool of the most hardened criminal. Have I ever told you how many months it took to wean her off the sippy cup? Or, on the flip side, how quickly she learned to jump rope, ride bike, and roller skate? There is no stopping, or starting, this kid. She sets her course, and we can only pray it's a good one!

I asked for the sweaty, squished kernel in her fist. She popped it in her mouth and that was that.

G: You made me do that. It's too bad. Now if he wants one, there won't be any left for him!

Sigh. Well, her heart is in the right place. On her watch, her brother might have to fight for his sanity, but at least he'll never go hungry.

Crowds, carrots, choruses, and inconsistent capabilities

My friend shared a Youtube video of a teen with Aspergers with me. The boy says Aspergers means he's half and half: sometimes he's like everyone else and sometimes he's autistic.

I see that with my kids. K. hates crowds. He can't stand eating in a restaurant, or even the lunchroom, but he did five straight days of Walt Disney World. He ran away when his class went to the symphony because he was afraid he wouldn't be able to sit with his friend, but when I took him a few weeks later, even though there was a mix-up with our tickets, he was cool as a cucumber. Sometimes when I pick him up from school and see him talking to himself or zigzagging through the hallway, I think: is this the same articulate kid who tells me how to save the planet over dinner? Yes and no. Half and half.

That could go for most of us. I'm half-typical and half-terrified. I vacillate between thinking I can overcome anything, and thinking I should focus on my strengths and cut my losses.

Like Saturday night at the grad banquet. The staff always serve all the students their plates. I'm not anti-service. I would have stood in the kitchen and dished every baby carrot onto every plate with my pinkie, but interrupting their conversations with relatives I've never met, in order to lean over them (was that serve from the left, clear from the right?), and then put their plate down without spilling white wine sauce on them, that's stressful. But, hey, I could have climbed on stage and given a speech (something that would make most people wet themselves) no problem. What's that about?

I made it through waitress duty, but then came the worship band. Seeing every other God-lover in the room sing like they could actually see the face of God on that Powerpoint screen, made me want to run out of the room, just like K. does when the math problems get too hard. I did turn to leave for air, but the person behind me, her hands raised and eyes closed, was blocking the aisle. Listening to worship choruses is supposed to make me feel close to God. Give me a lecture or commentary over music any day. Worship music does affect me, probably the same way touch or eye contact affect many with autism--it cuts too deep. Interestingly, hymns, with their nostalgia, theology, poetry, and four-part harmonies blending, don't have the same effect.

So, who am I? Who are my kids? Are they typical or unusual? Are we capable or stuck? It depends.