Wednesday, April 27, 2011

To all the docs I've loved before (and a few I'd like to hit with a live trout)

Angeline's ode isn't nearly as romantic as Willie's. Or as likely to go platinum.
Most healthy thirty-something-year-old women don't get to meet as many docs as I have over the past few years. It used to be that when your kid needed help, you saw one doctor for life. Now you get tossed faster than a bad blind date. But the good part about the diagnose/medicate/fund-my-child kind of doctor is that mom doesn't have to get naked. Or needles.

I'm sure our doctors have heard of the "rate your doctor" website, but more reliable and less well known are the Moms of Autism support group ratings. In a small city like ours, moms of kids with special needs see all the same specialists; we have our own "naughty" and "nice" lists. I dedicate this post to all the docs I've known over the past 12 years:

Dr. Angelic: the GP who delivered both my babies and never loses her adorable bubbly-ness, even in the middle of the night. She's one of the shiniest spots in my birthing memories. Dr. Angelic took me on after I experienced irreconcilable differences ("I couldn't have conceived that week - my husband was in exams!") with my previous GP. She took me seriously when I said K's behaviour was unusual and got me on a waiting list for a developmental pediatrician. Best feature: she tells me every time she sees me that I look more rested and happy than the last time (by her account, I should already be giving Drew Barrymore a run for her CoverGirl money). Only drawback: she's often sick herself and cancels more appointments than she keeps, usually after you've already paid for parking.
Eat your heart out, Drew, because Angeline's finally getting 5 consecutive hours of sleep and her GP says she's fabulous.

Dr. Gran: the developmental pediatrician who made the first psych referral and continues to dole out our pills. She's gentle and pleasant. Best feature: she knows anything you'd want to know about all the good stuff. Only drawback: she has difficulty hearing and sometimes I'm not sure if she's caught what I'm saying.

Dr. Llama: The first psychologist K saw (referred by Dr. Gran). He couldn't pronounce her real name, so we actually did refer to her as "Dr. Llama." She called me to tell me our name had come to the top of her waiting list the day K's first teacher said, "Why didn't you tell me there was something wrong with him?" in other words, right on time. K and Dr. Llama had such a good rapport that we actually had a period of mourning when she left the clinic after only a few months with us. Best Feature: Drawbacks: my husband had to take a lot of unpaid time off to meet with her across the city. She left before she could diagnose him and passed us on to her less gentle replacement.

Dr. Aspie: Billed as the "Is it Aspergers or is it not" doc, what Dr. Llama and her cohorts were unable to do over months, Dr. Aspie did in an hour. He watched K run circles talking about something scientific long after we stopped listening, looked at me, and asked with a little smile, "Is he always this oblivious?" We had a diagnosis and helpful advice before we left the building. Only drawback: we never saw him again. 

Dr. Yucky: Dr. Gran referred us to her to see if she could diagnose G. She couldn't. I found out later she'd undiagnosed other kids who had multiple issues and taken away their supports. 

Dr. Gotcha: She saw G regularly for a year and finally diagnosed her. She saw K too, and while we had a bad experience with a medication, I don't blame her. She was personable and available. She met with teachers. She listened. She too has left.

Now, after a year of waiting, K's reached the top of another waiting list for another clinic and we're about to meet a new doc. I've heard the moms in the group talk about him, but I don't remember whether he was naughty or nice. Perhaps it's better if I find out for myself.

Saturday, April 23, 2011


(I wrote this a while back, but never had the guts to post. I'm feeling bold today.)

My friend's Facebook status said: "I keep thinking of the little girl in the mall whose dad told her that her body was just not made right to fit into any of the clothes."

This is not a story about eating disorders. It's about imperfect parents.

Everyone who commented was furious at the father:

“Makes me sick.”

“So sad and so hurtful for her.....possibly for many years to come.”

“You need a driver’s license for a car, library card for books, but humans can just have babies willy-nilly.”

I know I'm supposed to feel bad for the girl, and I do, but it's the reactions to the dad that keep going over in my mind. They sound like the things strangers say when I go shopping.

A couples years ago, I was at the grocery store with my daughter and son, then 6 and 9. This is not as mundane a task as it sounds; my son’s behaviour is unpredictable: he was diagnosed at 5 with attention deficit issues and at 6 with an autism disorder. My daughter: same deals at 7.

I let my kids use the mini “shopper in training” carts. Grab bread, bananas, baloney, and milk without clipping any old ladies’ heels – check. Make it to the checkout without any tantrums, casualties, or open candy wrappers - check. Keep the kids busy returning the shopper in training carts while I waited in line to pay – bad idea. My 9-year-old began ramming his cart into the row of carts, repeatedly, in rhythm. Autistic children love rhythm. Sandwiched between two older shoppers of considerable girth and their matching purses, I was going nowhere fast. I was about to squeak “Excuse me” and squeeze around them when I heard the woman in the next aisle.

“People need to learn how to control their children! Some people should think twice before having kids of their own.”

As the rest of her grocery line debates the best punishment for my son, I debate my next move. I can’t get to him without making a big show of it. Should I take his hand, walk up to Superstore Nanny and make a speech about mature human beings respecting those with invisible disabilities? Or should I take both my children and walk out with all my dignity and no baloney?

I chicken out. I wait till the shopper in front of me and the panel of judges in the next aisle leave the store before retrieving my son from his game of musical carts.

I imagine that the dad is shopping with his daughter because he recently lost his wife, or perhaps she's just away for the weekend and he had high hopes for a bonding night with his little princess. Hours of frustration over not being able to find her size (or perhaps any size he can afford) lead him to blurt, "None of these clothes are made right for your body!" But in his fatigue, he says it backwards. And too loudly. And everyone stares. I may be wrong, but I can imagine he felt like I did when my daughter was scared to use the washroom at Disney and I slammed the stall door and growled in the happiest restroom on earth.
I'm going to go to sleep for a hundred million years, so I never have to pee here again.
When my son was a toddler, long before we knew he’d have “letters” (ADHD, PDD-NOS, SOS) behind his name I would crawl into his room after he was asleep, kneel beside his crib and whisper, “I'm so sorry.” Sorry for grabbing your arm too tightly so you wouldn’t run away at Walmart. Sorry for yelling at you when you did run away at Walmart by sneaking under the change room door, and I had to chase you through the men’s department with my fly open. Sorry for falling asleep in front of Blue's Clues while you climbed the TV with a pair of scissors in one hand and a bottle of Advil in the other. 

Sorry for forgetting how beautiful your eyelashes look when you sleep.

Perhaps I’m not as triggered by the dad’s statement because, despite the fact that my dad told me repeated that I’d inherited his super-sized nose and my mom’s bottom, I never fixated on my body (even when I passed my mom’s size by seventh Grade). I can see how hurtful words about looks could lead some in that direction, but I got caught in the web of another kind of words: rejection of my personality. Rejection that still hurts when it comes from other parents, shoppers, and Facebook.
Me dressed up for a day of errands with the kids, complete with soundproof helmet, padded knees to absorb the impact of my kids' shopping carts, and oxygen should I begin to hyperventilate. 
No, you don't need a license or card to be parent, but every licensed driver occasionally cuts someone off, every library cardholder sometimes returns books late, and every parent says things they regret. You don't get to say "I'm too overtired, sick, or overwhelmed to parent you today." You have to take care of them 24 hours a day, no matter how you feel, and sometimes you just don't do it well. On those days you tell them you're sorry, pray for forgiveness, and hope the good things you say are the ones that stick.

Friday, April 22, 2011

A little more Autism awareness

April is Autism Awareness month.

To celebrate, I made 16,000 Mennonite homes across Canada aware of my children's autism.  Well, okay, that wasn't the point: it was my first ever editorial, a piece on Easter and suffering for the April MB Herald, entitled "The paradox of the beautiful mess."

I hadn't even told some of my closest friends that G. had graduated from being my "typical yet difficult" child to autism spectrum kid 2.0.

(In the editorial, I said both my kids had Asperger's, even though G.'s diagnosis is pervasive developmental disorder - not otherwise specified or "pdd-nos," just like K.'s was at first, because, as I've already shared, that diagnosis means nothing to almost everyone. And I avoided "autism," even though the new diagnostic manual will abolish "Asperger's" and "pdd-nos" in favour of  "Autism levels 1, 2, and 3," since outside the disabilities community, "autism" is a big scary word with all kinds of stigma and preconceptions. I don't want people thinking my kids moan and headbang, when in reality, I'm the one doing most of that.)

We received G.'s diagnosis as a Christmas present in 2009. It was hardly a shock, since from the time her big brother was diagnosed, every specialist K. met would look over his glasses at her to see if quirky ran in the family.

But when we started looking for help for G.'s behaviour when she was 4, they all planted their feet at the same miserable starting block as they had with K.: bad parenting. We'd already proven ourselves as good parents to K., but that was the problem; obviously we were so involved with him, that she was neglected. Or perhaps we'd let her learn inappropriate behaviour from him.

We had to take a myriad of parenting classes, not for our benefit, but to demonstrate that we weren't her problem. Could we ignore G.'s interruptions and stay calm through her tantrums as directed by the behaviour specialist, practice child-directed play times prescribed by the Building Blocks of Attachment program, and use the proper authoritative tone and time-out techniques of Triple P? We could. Were we being consistent? Yes. But G. still kicked us every time we told her to put on her jacket? And she still yelled "I hate you" and tried to climb out the window every time we sent her to her room? Oh, perhaps we should look at whether there's something going on for G.

Ya think?

After a couple years of bouncing from referral to referral, all of which I knew weren't what we needed but might lead us through the system to something helpful, we finally got to a specialist who didn't look on me as medically unstable, negligent white trash. (The fact that I cried in front of a nurse when she told me I had to wait 2 more hours till breakfast the morning after K. was born is permanently etched into my medical history and always comes back to haunt me. After 24 hours without food or sleep, and suffering unimaginable pain, a few tears did not mean, as the social worker sent to my bedside implied, that I was in danger of killing my baby. A nurse, perhaps.)

Because I'd had years to accept the possibility of another diagnosis, or because I'd been there/done that with kid #1, or because life just keeps going, I didn't really grieve the second time around. Part of the reason was that other people didn't give me the space: they either blushed and stared into the distance as if I were discussing my bathroom habits, or reacted as if this were nothing more than a cold. And I was more afraid to disclose this time, so I didn't give others much space to respond to the diagnosis either.

The only time I think about having all my offspring on the spectrum as tough luck is when people talk about their grandchildren. If I had another kid, I'd have a greater chance of my family living on, of someone someday having my eyes, passing on my photos and stories, saving my teacups in their hope chest, or doing a Grade 3 research project on great-great-grandma Ange. A small part of me felt like "trying again," but genetics, energy levels, and present demands being what they are, that wouldn't be a wise move. And I really shouldn't place limits on my dreams: if I have no trouble believing they can overcome their attentional difficulties and succeed in college, who's to say they won't get married and raise a family?

If Captain Kirk can tie cosmonaut Yuri Gagarin for the rank of #6 most popular space hero, then anything's possible.
 But probably the main reason I'm not grieving G.'s diagnosis is that understanding why it's so hard for her to wear socks, eat meat, do math, remember instructions, switch gears, and manage her emotions has only improved my relationship with my daughter. I know when to give her time, back massages, limits, and gentle nudges. I'd take a kid I know how to help over "typical but difficult" any day.

I'm so glad I'm aware of autism. But I'm still not sure how I feel about making another 16,000 Mennonites aware of it.

Saturday, April 02, 2011

The logician and the mystic

Bones: It's the truth.
Booth: Well, it sounds like the truth cause it's so rational, right, but, you know, the true truth is that you hate Christmas, so you just spout out all these facts and you ruin it for everyone else.
Bones: I ruin the true truth with facts?
Booth: Yeah, and you ruin it for the squint squad, too, by making them work on a case about a guy who's been sealed up in a fallout shelter for 50 years.
Bones: Okay, how would you like me to spend my Christmas?
Booth: Christmas is the perfect time to reexamine your standing with, you know... (pointing upward)
Bones: A helicopter pilot?
Booth: Oh, right, right. You can't measure the man upstairs in a beaker, so he can't possibly exist.
Bones: "The man upstairs?"
Booth: Mmm. You know, you don't know if you're sick, but you're more than willing to take drugs just in case. Seems to me you could give the man upstairs the same benefit of the doubt that you do an invisible fungus.

I've never heard anyone on the TV series Bones refer to themselves or each other using the A word, but Temperance Brennan ("Bones") and most of her coworkers have the rationality, bluntness, and perseveration on bugs, body parts, bytes, Byzantine warriors, and botanicals that would make any Aspie beam up with pride. Brennan's partner Booth, on the other hand, is a committed Catholic who believes in mystery, psychology, and simple faith.

"Nothing is beautiful."

My 11-year-old Aspie appears by my bed near midnight, his eyes filled with tears. I pause Bones and Booth on my laptop, extending their moment of conflict.

"Nothing is beautiful," K. whispers again through trembling lips, and waits.

Tired and tense, his insides are sending him the faulty signal that the weariness originates in the world outside, I think. He recently confided that his mind is never silent: tapes of T.V. shows and conversations run through his head incessantly, indistinguishable from external sounds, until a real voice breaks in for comparison. I now understand why he has the T.V., C.D.s, or his own babble cranked at all times; the sound tethers him to reality. I hear nothing coming from his room.

"Nothing is beautiful." What do you mean?

"The only reason we see colours is because of the way objects react to the light. It's just the light. Without it, nothing in the world has beauty. I read it in a book."

So I was wrong, not a feeling originating inside, but a fact. I'm reminded of the day I came home from school broken by basic biology, fighting against the suggestion of tissues and cells, yelling at my mother, "I'm all one piece!"

I wrap my arms around him. He clings to my neck. He's so much taller now, his body feels almost foreign, and yet fragile still. I pull back to see his eyes. I know he's only 11, and I can't read by his face what he's thinking.

An Asperger's diagnostic criteria page flips through my mind: "marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction." I consider the moving target for my words, tone, and expression. But I trust our connection.

"Are you only a bunch of cells or are you something more? Knowing the scientific explanations does not reduce the mystery, the poetry." I'm speaking more to myself. I can't see if he's with me. But he's calmer. I need to keep talking before the voice in his head interrupts.

A word settles on the fringes of thought. The light. Christ.

Yes. "I Am the light of the world."

I'm making it up as I go. "That's why God make the light first. That's why Jesus said he is the light. He holds everything together. He's the light that makes everything beautiful. That's why we know heaven is beautiful even though we don't understand it, because Jesus is there."

I wait. His eyes sparkle. "Yes. That makes sense!"

My boy. The one who wowed the neighbours with explanations of pollination at age 4, is also the kid who had a vision of angels at age 5. The best of Booth and Brennan in one heart-stopping Justin Bieber-like package.

"'Believe in the light while you have the light, so that you may become children of light.' When he had finished speaking, Jesus left and hid himself from them." (John 12:36)

Booth: There's a story here we don't know yet.
Bones: Like what?
Booth: Bones, "don't know" means it's a mystery.