Wednesday, May 26, 2010

Take these broken wings

I endured the most difficult conversation in the car last night on the way to pick up my husband from work. It was a tearful euthanasia/palliative care (gone wrong) debate, right in front of the dying patient.

G. had found a one-winged butterfly, which she was aggressively nursing back to health. (It wasn't working.) She'd it shake and poke it to try to make it move. Every time it wiggled, she'd report her clinic's success rate. Poor K. was beside himself.

K: "You're hurting it!"
G: "It moved its leg. Yeah, it's still alive!"
K: "It doesn't want to live anymore! Leave it alone."
G: "Oh no, it stopped."
K: "Finally, it's not suffering anymore."
G: "Wait, it waved again."
K: (in tears) "Ahhhh!"

We finally arrived at the office, where I insisted we leave butterfly among the flowers. G. said, "We can take care of other creatures. Right, mom?" All I can say is, with her kind of care, I hope insects don't have a lot of pain receptors.

Eugene Peterson writes, "Suffering is a character of the personal. Animals can be hurt, but they do not suffer. The earth can be ravaged, yet it cannot suffer. Man and woman, alone in the creation, suffer. For suffering is pain plus: physical or emotional pain plus the awareness that our own worth as people is threatened, that our own value as creatures made in the dignity of God is called into question, that our own destiny as eternal souls is jeopardized."

Remembering Scripture can be comforting in times of suffering. Verses like 2 Corinthians 1:3-5: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows."

Or Philippians 1:6: "He who began a good work in you will carry it on to completion until the day of Christ Jesus."

Lately the verse that's been in my mind is: "Help, God--the bottom has fallen out of my life!" (Psalm 130:1 The Message).

Not exactly one of comfort or completion. It is nice to know that someone else (although a few thousand years too early to cry with me over lattes) has felt the same way, but I'm guessing the writer's problem had more to do with being chased by lions or watching his children being carried off by marauders, than the setbacks of parenting a child on the autism spectrum.

For that I need to look around the table at my mom's support group. They know the fear, vigilance, discouragement, inconvenience, childcare issues, safety concerns, the stares, the home-school-doctor conflicts, the medical decisions (do I look like a doctor?), the frightening side-effects, the uncertainty about whether this summer's plans or independence (college? empty nest? grandchildren?) dreams will pan out.

What I like about Psalm 130:1 is that it's directed at God; God-given words to pray when I'm too tired to think up my own (but that fit my hurt like a glove). Eugene Peterson says this Psalm is "a powerful demonstration that our place in the depths is not out of bounds from God. We see that whatever or whoever got us in trouble cannot separate us from God."

No relief for wingless, Über-handled butterflies, but for the K.'s and the moms (and the G.'s in their own way) who weep over lost beauty, who feel the pain plus, who see the bottom fall out, it's something to hold onto. Even if it's only with one wiggling leg.

Tuesday, May 04, 2010

What flavour of jelly will you be?

How much of a child's personality is shaped by their disability? Who would they be if the autism suddenly disappeared?

Here's another quote from Jodi Picoult's Aspie character, Jacob, from House Rules. (Are you getting the feeling that I loved the book?)

"Once Theo asked me if there was an antidote for Asperger's, would I take it?

I told him no.

I am not sure how much of me is wrapped up in the part that's Asperger's. What if I lost some of my intelligence, for example, or my sarcasm? What if I could be afraid of ghosts on Halloween instead of the color of the pumpkins? The problem is that I do not remember who I was without Asperger's, so who knows what would remain? I liken it to a peanut butter and jelly sandwich that you peel apart. You can't really get rid of the peanut butter without taking some of the jelly as well, can you?"

I disagree. I love my kids and my brothers for who they are, but if there was a way to make life -- touching, experimenting, relating, dressing, eating, working, learning, expressing -- easier for them, I would.

I know the churchy stuff about hard things building strong character, but when the disability is a lack of coping skills like endurance, adaptability, and impulse control, rather than growing them outward and upward, the pain of butting up against the world often makes children on the spectrum retreat further into themselves. If you misread the world, chances are you won't get the lesson of pain either.

And I don't share Jacob's fear that my kids wouldn't be themselves without the disability. While it's true that kids on the higher end of the autism spectrum are often articulate, curious, intelligent, endearing, unique, and precocious, it wasn't the autism that made them that way; it was God. All of us are who we are, and we love each other for it. But none of us is exactly who we were meant to be. We are broken, imperfect, beautiful walking images of the living God.

I don't for a minute dream of giving birth to anyone other than who I have. I don't waste time wishing my kids were different. I'm not waiting for an antidote. But I do look forward to the day when love, joy, peace, patience, kindness, goodness, and self-control will rule in every heart and each of us will be more like our true selves, the perfect unique person God intended all along.

He knows what's peanut butter in us and what's pure jelly. He could separate them without losing any sweetness. But I have the feeling our destiny will look more like this: he'll transform our rancid peanut butter into Nutella.


My spidy sense is tingling--ouch!

"When I was little, I convinced my brother that I had superpowers. Why else would I be able to hear what our mother was doing upstairs when we were downstairs? Why not say that the reason fluorescent bulbs made me dizzy was that I was so sensitive to light?...

Having Asperger's is like having the volume of life at full blast all the time. It's like a permanent hangover....All those little autistic kids you see smacking their heads against walls? They're not doing it because they're mental. They're doing it because the rest of the world is so loud is actually hurts, and they're trying to make it all go away....

Nobody ever asks Superman if X-ray vision is a drag; if it gets old looking into brick buildings and seeing guys beat their wives or lonely women getting wasted or losers surfing porn sites. Nobody ever asks Spider-Man if he gets vertigo. If their superpowers are anything like mine, it's no wonder they're always putting themselves in harm's way. They're probably hoping for a quick death" (words of the character Jacob in Jodi Picoult's House Rules).

The sensory "stuff" of autism spectrum disorders has to be one of the hardest part to handle. And the hardest to understand.

He looks like he can't hear you, when in fact he might be hearing you, the ceiling fan, the fridge, the dog on the sidewalk, and the downstairs TV all at once. He's focusing on the fan and blocking out the rest so he doesn't go nuts. I used to think K. was running away and laughing out of defiance, when he was really doing everything in his power to cope with sensory overload.

What parent of a kid on the spectrum (especially pre-diagnosis) hasn't lost their patience with a kid who makes the whole family a half-hour late by crying over a hair in her face or the pants that "just don't feel right?" How many parents haven't thought "missing person report" when he bolted in the crowded arena because it was too noisy, the lights were too bright, or somebody touched him? How many get tired of making separate meals or dealing with the tears when the kitchen smells like anything non-macaroni (or when the clothespin on her nose starts to hurt)? If it's hard for you as a parent to watch/respond to/turn your life upside down for, you know it's that much harder for them to live it.

Think of any time in life when you might hear, see, smell, taste, or feel something, and those are the times autism can hurt. No one promised adapting to life off Krypton would be easy.

Sunday, May 02, 2010

this life a reality, not a status symbol

When I post my day's schedule (such as: morning at daughter's clinic appointment, off to school lunch program shift, afternoon accompanying son on field trip, or: interview in the morning, interrupted by call from school, followed by coffee date with friend, digging in the garden, and watching the neighbour's kids after school) on Facebook, I feel misunderstood. I get two different reactions: either people accuse me of complaining about how busy my life is, or they think I'm bragging about everything I can accomplish in day. I'm doing neither.

I got anxious about dealing with confrontation, asking for help, talking to strangers, going to new places, making decisions, meeting others' demands, and trying things (eg. baking and gardening) that my mom is über-good at in case I stink at them. As with anyone's life, (other than the part about following my mother's footsteps) often I don't have a choice. I need canned tomatoes, and I can't find them in the store, so I have to ask for help from a stranger, who may or may not be rude, and whom I may or may not decide to confront for it. I don't like rushing to appointments or interviews on the same day one of the kids needs to be shadowed on a field trip, or calmed in the principal's office after a meltdown, or rushed to the E.R. for a fluky injury, but I don't always find out about the field trip ahead of time, and well, no one gets advance memos about the others. I don't like being busy, wouldn't choose to busy, am not proud of being busy, but my kids don't ask me whether I have work deadlines before they have a crisis. This is just the way earning a living and maintaining a home, while caring for children with challenges, goes. I'm not complaining, I'm just sayin'. That's life.

So when I tell Facebook the demands on my day, I'm not looking for pity or admiration. I'm celebrating. Because, for someone who has to take a deep breath before saying "excuse me" to the shelf stocker, I done pretty good.

Saturday, May 01, 2010

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!