Of good soil and talking cats

I sit across from my spiritual director, a young nun in her 70s.


I tell her about my children's silence. How I sow words in the dark. Without knowing the questions they carry or the misinterpretations they take away from me. Or even if they're listening. How I throw out advice about friendship, sex, faith, money, how to clean a toilet, and hope at least a handful of my words fall on good soil.

What is their good soil? What's yours?

I have no idea what she's talking about. I know bad soil: misunderstanding, discomfort, unreadiness, hopelessness, rejection.

What's your good soil?

Her elderly cat Precious, no larger than a kitten, enters the room and rubs against my pant hem.

Call her.

I pat my lap, whisper Come. She looks up at me.

She knows when the timing is right.

I reach down and stroke her back, her belly.

What's happening between you and the cat? 

Precious glides back and forth across my legs, but she isn't coming up. She's purring.

I don't have words for it, I say.

Aha, my nun says. Now you've finally gotten out of that over-thinking head of yours into something deeper. 

She cups her hands in front of her chest. There is a connection beyond words. That's your good soil. 

That's my children's.


***

My son and I sit shoulder to shoulder, leaning over clay bowls of soggy Mini-Wheats. 

That's my story about how a cat spoke. That's how I know I'm a good mom and you're going to be just fine, even when all I hear is "I duh know." 

He smiles that crinkled smile that makes his eyes vanish. And then he tells me something about his day. 

The timing is right.

My El Kabong moment

Scene 1: I'm eating a meal at a friend's house and my child stands up to run around the table and grab the pickles. Before I can open my mouth, the friend has sternly told my child to sit down.

Scene 2: We're passing through a shop with relatives. My child reaches for something from the shelf. As I lean forward to get her attention, relatives A and B have grabbed her arm, jerked her away and given her a mini lecture.

I'm baffled by the way friends and family parent my kids right in front of me. Is it just me, or do they do this to you too?

If it is just me, I suspect it's because for my first 10 years of parenthood, everybody (including myself) suspected my children's behaviour was my fault. Everyone else assumed they weren't disciplined consistently; I, who knew they were, thought I just lacked the Magic Mommy gene. K was 7 before he was diagnosed with Aspergers, but we had another 3 years of "They're so focused on K, they must be neglecting G" before the true cause of her difficulty behaviour was diagnosed.

After about 7 years of being forced to take one parenting class after another, being pressured into consistently and more consistently doing things (locking kids in their rooms, pinning them to the floor, etc.) that I knew weren't helpful, just so therapists would put through the next referral, I'm done parenting however others tell me. I know what works with my kids and what will lead to escalation, confusion, or futility.

I know what I'm doing. And I know I know. The teachers and psychologists I work with know I know. Maybe some family and friends are a little slower on the uptake, and I've think I've just discovered why: I'm too thoughtful.

When most people see an unexpected behaviour, they jump right in. I take a moment to calm myself (so my voice and touch are gentle), assess the situation, and mentally flip though all the techniques I've used in the past. This only takes 5 seconds, but sometimes, that's 3 seconds too slow for everyone else.

Would it be better if we were all both thoughtful and lightening fast? Sure. But given the choice (with the exception of life-and-death situations), I'd rather take the 3 seconds I need to respond gently and effectively. Unfortunately, when there are others in the room who care about my kids, I don't always get that chance.

So now that I've realized this, the next step is telling the Quick Draw McGraws: Hang on, honey. I'm the parent. I've got this under control.  

But give me a few seconds to calm myself first. I want to do this gently.

I'll do the parentin' around here, Bubba Louie, and don' you ferget it!

No-I'm-not-on-crack parenting advice Part 1: What that kid needs is a good massage and more television

This is the parenting advice you won't hear from your mother, the granny in the checkout line, or the guy behind you at church.


Instinct says, "When they're bad, make them miserable so they'll think twice next time." At the first sign of noncompliance or disrespect, we take away TV, send him to his room, and pile on the chores. How's that been working for you?

If you've got a kid with the skills to self-regulate: to control impulses, manage disappointment, and express frustration in words, a little pain can lead to gain. But if you've got children anywhere on the spectrum, chances are, they couldn't meet your expectations in the first place, and now you've just made it worse by overloading them when they're down and taking away all the things that could calm them. Typical children need the consequences and rewards to motivate them; for a child missing skills, all the consistent consequences in the world will only make it worse. Way worse.


By all means, when Jakie or Judy starts throwing knives or refusing to do her homework, give 'em a time out. But not the "I hold the door shut while you scream and you can't come out till you're nice" kind, though (I wish I'd never met the psychologist who made us do that for weeks.) This is not the time to make them submit to your all-powerfulness; this is a time to model relaxation. You can't teach flexibility by being inflexible. "Your actions are telling me you need some time to calm down; would you like an exercise ball rolled on your back or should I read you some Hobbit?" might sound like rewarding the bad behaviour, but it's not about rewards or behaviour - it's about teaching your child the skills to cope.

On a recent playdate-gone-bad, my daughter was excited to see her old classmate, but almost immediately announced "It was more fun before you came" and proceeded to play computer games without her. The school psychologist reminded me that my daughter's rudeness was the only way she knew how to cope with the unmet expectations: her friend had matured and was more into gossiping about movie stars than pretending to be puppies. My husband calmed her down and helped them choose a movie they both liked. A nine-year-old on the spectrum is not ready to manage disappointment gracefully. If we'd focused on her behaviour, we'd have missed the point.

When your spouse or client drives you crazy, you take a walk or grab a coffee. You're not rewarding yourself for wanting to throw them out the window; you're doing what you need to do so you don't want to do it anymore. When life drives your kid crazy (and a lot of things will), he needs you to teach her the same thing. 

As you turn the TV on for your screaming toddler, or hand your grounded teen a phone to call a friend, or offer your daughter a foot rub after she called you "idiot," don't expect your mother to stand up and applaud. But don't for a minute think you're being a pushover parent.

You're being an effective one.

making a friend with her own fair hand

Yesterday G and I went to a "special kids" day at the Red River Ex, a free two-hour trip to the petting zoo, kiddie rides, and free hot dog lunch for kids who can't handle the noise and line-ups (or who would get lost - literally - in the crowds) of a regular day at the fair. She was looking forward to skipping school (and meeting an alpaca); I was looking forward to a little bonding time with my girl.

While feeding the goats (enjoying a few minute's respite from the pouring rain), we ran into someone I'd met a year ago at my moms of autism support group, there with her eight-year-old son. We'd been wanting to schedule a date to get our families to connect for almost the whole year. We were just discussing how to convince the kids we wanted to stick together, when they announced they were going on the rides (in the rain).

Between moments of catching up, I snapped photos of our kids screaming and laughing on the swings and coasters (I'm sure they were hamming it up for the camera). I learned that her son has some of the same challenges as G, and some strengths that G does not. As we walked from one ride to the other, G entertained him by sticking her hand through every recycling bin.

I wanna hold your hand...

"She's being goofy, and he's laughing: that's a good sign," the other mom whispered.

We stayed together for the rest of the morning. "I'm lucky I get to do this because of my autism," Mr. Nice-guy said as we walked into the lunch area. Sitting on the picnic table with their hotdogs and chips, G bent down and planted a kiss on Mr. N's sleeve. He didn't flinch, even when she got embarrassed and washed the kiss off with her freshly licked fingers.

At supper, my husband asked G about her day at the Ex. When she mentioned her new friend, her eyes sparkled.

One of the hardest things for me as I look into the future is wondering if G will be able to live independently, make healthy relationships, be happy, or raise a family. Meeting Mr. Nice-guy was a boost in my discouraging, assessment report-burdened week. Even if his parents someday reject my proposal of an arranged marriage, knowing there are sweet boys like him on the spectrum gives me hope.

This heap o skills is a pain in the assessment

I wonder: does every parent struggle to teach their children basic life skills? Do you go over the safety checklist everytime you walk into a grocery store or the hygiene rules every time you step into a restaurant? Did you have to teach them the steps involved in asking a friend to hang out or explain the necessity of utensils? Or do most children pick up these things themselves?

I remember K's developmental testing in Grade one. I learned that at his age, he should be able to dial a friend's phone number and recite his favourite TV program's channel number and showtime. I'd never thought to teach him. Isn't every parents reticent to show their six-year-old how to use a phone because they'll be prank calling NASA? Doesn't every parent use TV as a one-hour break from hyper-vigilance when they need it, and to heck with when the kid's favourite show is on?

I was upset that K's scores were low because of what seemed like random, unimportant skills - skills that reflected more on his mother's priorities than on his abilities. If we practiced phone dialing, I knew he'd learn it. I immediately made a list of all the tasks he couldn't do and set to teaching him, so he'd be ready the next time a WISC-IV or BASC or [insert acronym here] came along.

(The D-TORF was particularly infuriating: when you get to the third thing that the child can't do in that category, you stop, and that's their developmental age. If they can ride a bike with no hands and explain T-cell counts, but they've never made toast, they're developmental infants.)

Same thing on G's recent testing. She didn't give the psychologist complete enough answers for questions like "Why do we wear seat belts?", "How do you respond when a smaller child bullies you?", "What should you do if there's smoke coming from a neighbour's window?", and "What do you do if you find a wallet at the mall?" When I asked her the same questions, she gave me the answers I've given her in the past: "So we don't fly out the window." "Say 'Stop' and walk away." "Call 911." And what 9-year-old walks the malls by themselves and needs to know what to do with a lost wallet?

(She loved our Q and A, and begged me to ask her more so she could memorize the rules. I taught her my cell number, which based on how many times she called me from the kitchen last night, I may soon live to regret.)

Am I not teaching her enough detail? Am I not anticipating all the important questions? Or is the point that other kids just know this stuff without their parents drilling them, and she should too?

My children don't even ask for snacks when they're hungry or play dates when they're lonely; I have to set their nutritional calendar and social diet. Every thing my children learn, I have to teach explicitly with demonstration, repetition, and visual reminders. They arrived on our planet with their own language and culture, and they don't just assimilate through osmosis.

They "learn" how to do new tasks quickly, but actually doing them regularly without reminders or frustration comes painfully slowly. Since it takes three to twenty-four months for any new skill to stick, I have to pick my lessons carefully and patiently: do we introduce bed making or teeth brushing into the morning schedule first? Do we want to work on chewing with our mouths closed or holding our forks properly? Which should be the first to go: the nail biting or the nose picking?

(And, as an aside, if you see my kids doing something inappropriate/unusual/icky, you can safely assume that it's either: a) further down the list of lesson priorities, say, after "Don't hide under parked cars" and "Don't asperate rocks," or b) We've been working on it steady for 23 months, and any day now, they'll start doing it. In other words, rest up your judgment muscle for who should win the next Canadian Idol or Idiot or whatever reality show you like that I don't have time to watch.)

It's upsetting that the records of my children's potential are based on questions they could answer the week after the testing. Since the psychologists all use the same tests, and therefore there must be some consensus on what a child should know at a certain age, they really should release the list to parents. Send it to me every year on their birthday! Then I'd know for the next assessment whether it's the tidy bed or the worn toothbrush that will make them go down in the school division annuls as successes.

Imperfection

(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.

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.

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 just...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.

Apology not accepted

When we were in B.C., the thing I was most looking forward to was visiting a church I'd read a lot about. Unlike many B.C. churches, it doesn't have a million dollar facility, or several hundred families on the roster, or a unique blend of liturgical and modern media elements. This little group meeting in a school cafeteria caught my eye because it esteems people with disabilities.

From what I'd read about the pastor, I knew he believes God often speaks to those of us who can pretend we need nothing through the people society sees as needy. His books are full of stories of people who can't read, pointing to a verse in the Bible that says exactly what someone needed to hear. Or someone experiencing a divine moment as they spun in circles to the music with a nonverbal child.

When we walked in, we were greeted by a cheery older couple. Guy Smiley explained that the service would be different from what we were used to, the back would fill up with wheelchairs and other people from local residences with their caregivers, and would be very noisy (and isn't it great that our church welcomes them when other churches ask them to leave). We should sit at the front with the regular people.

My hubby T., the ever-gracious-and-conciliatory one, thought Guy meant "the people who attend regularly." I heard: "the people who don't have a diagnosis." I couldn't help wondering, if I'd come with my kids, where should we have sat then?

T. and I sat near the worship team, on the side of the semicircle, so we could see the back. I was troubled by the huge aisle between the front "regulars" and the back dwellers. This was not what I had expected.

The woman at the mic said, "If you have attended formal worship services, this church will be different from what you are used to. We are part family picnic, part Upper Room waiting on God." That summed it up pretty well. As the worship team sang, I looked around at the picnic - I saw people getting up to hug each other, walking up to the communion table at the front, and praying for each other in a little kitchen tent at the back. A little girl pranced up to the first row and planted a kiss on the pastor's cheek. It was a beautiful family scene.

And we were welcomed in: when T. and I stood at the communion together, I felt a hand on my shoulder. Guy Smiley and his wife were praying over us. T. and I sat down in the tent, and the couple from the church there prayed for us too. But no wheelchairs rolled to the Lord's table; no wheelchair squeezed into the tent.

The pastor's wife, who like her husband has also written a fabulous book on prayer, got up to speak about waiting for God through the tough stuff. A few minutes into her sharing about the challenges of life, a cry came from the back. She stopped. And interpreted. "He's saying 'What's the good news?' I'm not allowed to get up and speak here unless I give you good news." I gathered that this gentleman has a ministry of reminding preachers to get to the good stuff on a fairly regular basis! I hung on every word of the bad news and the good, because waiting on God was on my mind during this trip (and not only because we had to sit for three hours in traffic ready to slap each other silly, trying to reach Vancouver, which should have been a 4o minute trip). Running ahead of God is so much easier than waiting (and I'm not alone. Read Genesis: Abraham, Isaac, and Jacob are the patriarchs of impatience).

So, in the spirit of patience, I'll give the church the benefit of the doubt. Perhaps the wide aisle between the front and back isn't there to keep the "non-regulars" away. Maybe the people at the back requested more room to move their chairs around, or maybe their assistants - many of whom wouldn't come to church if they weren't being paid for it - are more comfortable observing the family picnic from a distance. Maybe, other Sundays, some one has rolled up to the prayer tent, and the regulars tripped over themselves clearing the furniture to make room.

What I'm not ready to accept, however, are Guy Smiley's disclaimers. May I suggest a new script? Here's the conversation between the greeter and visitor in Ange's head when she sees your picnic:

This church has saints crying out in words only God can understand: great, that's worship! Half the people are in wheelchairs: isn't it nice they choose to worship with you? People are free to rock, flap, spin, pant, or pick: awesome, I feel like I'm with family! If you're a church built on the passionate presence and heavenly messages of people living with differences, then celebrate it; don't apologize for it.

There'll be scary school stories and tales of the glories...

When Staples decided Back to School was "the most wonderful time of the year. Fa la la and ho ho ho," they didn't poll parents of children with special needs. I much prefer having my kids in my hair all summer to being on a short leash tethered to an elementary school and on the speed dial lists of an entire educational team.

And being around all the other typical families in the hallway and playground makes making comparisons far too easy. So, rather than fighting it, I'm going to go with it.

I shall now compare the school-related concerns of two equal, yet different populations: Parents Of Neurotypical Kids (I'll call them ponks), and Parents Advocating For Unusually Needy Kids (pafunks). (Yes, that's the best I could come up with. How many hours do you think I have to budget for acronyms?) My purpose, as always, is not to cause offense or enlist pity, but to stir up gratitude and understanding in my typical-life friends, a sense of "someone else gets it" in my fellow advocates, and a sense of humour in myself. (I know it's in here somewhere....) To entertain you. And, of course to vent. Because we all need that sometimes. Please, indulge me.

So allow me to present (through the wonders of that intimately distant, anonymously exhibitionist tool called the internet) the conversations that happen only in my head:

PONK: I hate packing lunches.
PAFUNK: I wish my kid could stay for lunch, but the EAs are on lunch break.

PONK: I hope my kid gets a speaking part in the Christmas play.
PAFUNK: We just hope our kids will be allowed to participate in the chorus, and if they do, that they don't fall of the stage when they start to spin.

PONK: I'm worried my kid will follow the crowd.
PAFUNK: Following the crowd is how kids learn to be kids: it's why I wore neon pink gel shoes in 1985 and threw them out in 1986, and why I stopped picking my nose in Kindergarten (okay - first grade). I wish my kids would take more notice of other children and learn to socialize, play, dress, and talk the way they do. G. used the term "freaked out" last week, and I almost baked a cake.

PONK: I'm nervous about the grade 5 sex ed. curriculum. I hear it mentions masturbation.
PAFUNK: Ooh, big deal. There are many parents who've had conversation with school staff about teaching appropriate (bed)/inappropriate (front of the classroom) places for self-stimulation since Kindergarten. They're thinking: Been there, wrote the social story. Chill.

PONK: I'm not sure my kids is getting grade 3 math. How will he ever become a brain surgeon?
PAFUNK: We're happy when kids on the spectrum manage the sensory overload in the classroom long enough to hear 3 minutes of math.

PONK: I hope my kid has a nice field trip.
PAFUNK: I pray my child is allowed to go on the field trip despite short staffing. And if she does, that she won't wander off downtown and get lost this time, or run into the street and narrowly miss being hit by a bus.

PONK: My kid was sent to the office for talking back to the teacher.
PAFUNK: Our kids are sent to the office every day. If no furniture or staff are permanently damaged in the process, we don't even ask.

PONK: There are like one or two inservice days every month when the kids can't be at school; it's hard to find childcare.
PAFUNK: There are so many days when we're transitioning into a new classroom, adjusting to a new medication, weaning off a bad medication, or wearing out at the end of the school year, and he can't be at school all day; it's almost impossible to find childcare.

PONK: I'm not sure whether I should give my child this cold medication or just wait it out. What if it's bad for her?
PAFUNK: This medication he has to take daily in order to function....I hope he doesn't have to stay on it long term...I don't want it to make him suicidal or diabetic or grow horns like the doctor warned it could.

PONK: I'm nervous about parent-teacher interviews.
PAFUNK: Every day is a parent-teacher interview. Every time I walk into the building, I get the good news/bad news report. Some days I get asked whether something's "going on at home." Other days I get a "you need to try another medication" message. Some days the staff walk away from me in frustration; other days we almost hug and sing Kumbaya right there in the hallway. At the scheduled parent-teacher nights we just smile and wave.

PONK: My baby is going off to kindergarten/college. I cried that whole first day because I realized my baby is growing up.
PAFUNK: I have friends who have had to put their kids into foster care because the child's autistic meltdowns were putting their marriage or their other children's lives in danger. They cry every day because their baby is gone. I get the melancholy and mental adjustment of sending kids to school for the first time, but please don't be hurt if I save my sloppiest tears for others.

PONK: I'll do anything to help her succeed. Some days, it takes everything I have.
PAFUNK: Me too. Now we're talking.

The gluten free trial - order in my kitchen!

I started the kids on a gluten free diet the day they got back from camp. No wheat, rye, or barley. That means no tin soups, bargain cereals, donut shops, free wiener roasts, pizza parties, baking from the snack table after church, unless I bring all my own homemade/overpriced hot dog buns, wieners, pizzas, and baking.

(I'm not really a baker, but I have to admit the gluten free cinnamon buns turned out better than most things I've made. You can find the recipe here: http://iamglutenfree.blogspot.com/2007/03/cinammon-roll-of-your-dreams.html The dough (batter) is so sticky that I had to roll and lift the buns using plastic wrap, and the final version looks lumpy, but they taste oh so melt-in-your mouth good.)

This is so unlike me. People have been telling me for years that if only I'd get rid of food colouring/artificial flavours/preservatives/gluten/dairy that autism and ADHD would disappear and my family would walk hand-in-hand into the sunshine. And I got mad.

And I got doctors. I've been doing the medical thing for the past 5 years, particularly this year, since we've had weekly access to a child psychiatrist (who once played a Meti girl at Lower Fort Garry and has a twinkle in her eye like she still could). As the diagnoses piled up, it took me a while to get comfortable with her (Why do you see so many things that I'm not ready to accept yet?); once I did, I've come to trust her judgment.

But even twinkly, trustworthy psychiatrists make mistakes. Because with drug trials, no one knows the right answer till the test is done. We've had some frightening, frustrating (thankfully - temporary) side effects.

We're looking for something to "loosen the glue" of perseverations/fixations. ADHD medications can help kids concentrate, but they don't tell kids what to concentrate on! Kids on the spectrum feel more relaxed when they can draw/talk/learn/think/read about their own interest. But in order to feel successful at school, K. has to spend a least some time drawing/talking/learning/thinking/reading about what the teachers and classmates have in mind. He want to fit in and feel a sense of accomplishment, but that world-altering super ion suit will not wait in the corners of his brain until home time! It begs to be drawn....on a Dixie plate or paper towel if necessary!

The medication options are antidepressants, which can cause suicidal thoughts or aggressive behaviour, or atypical anti-psychotics, which can lead to tick disorders, high cholesterol, obesity, diabetes, cancer, breasts (!), and just generally: death. So either you want to be dead...or you are. Okay, I'm exaggerating: the serious side effects are very rare, usually only appear at high doses or over longer period of time, and most of them (other than the tick disorder and, of course, death) are reversible. But it doesn't keep a mother from lying awake worrying about them.

Lately, I've been meeting more people who've asked, "Have you tried gluten free?" One was a therapist and the sense I got was: if you're willing to take all these medication risks and expenses, why aren't you willing to try a little risk-free inconvenience? The other was a parent whose child was diagnosed overseas, and the leading autism specialist there told her to "Take him off gluten and come back in three weeks." It made a world of difference in the child's behaviour and character. Since then I've read books about kids who stop screaming and start making eye contact for the first time after a few weeks off gluten. Lately, autism has so crimped our quality of life, that having to carry my own cookies or hot dog buns in my purse feels like nothing!

Now, I'm not becoming a barefoot, bra-less, granola-chewing hippie (although, come to think of it, they were pro-drugs, weren't they?). I still believe medication can be safe and helpful. I'm just not ready to try another option on the antidepressant/anti-psychotic list. And I'd like to be able to tell the "Have you tried gluten free?" people: "Yes, and it was the best thing (or the dumbest waste of time) ever!"

I'll let you know which in a few weeks. By then I may be guilty of contempt of kitchen. If you need me, I'll be smothering myself in rice flour and cinnamon....

On different playing fields

I ran into an old friend at the zoo.

We were barely in the zoo entrance, when G. began yelling at me. "That's not where the prairie dogs are! You're going the wrong way. We're never going to find them! Why can't you find things - you're a grown up! This is too weird."

I sigh and take a few more steps in the direction the prairie dogs are on the map in front of me and in my head. The place where they have always been. I keep my eyes on G. in case she tries to bolt toward the prairie dog haven in her head.

I walk slowly, waiting for my friend to get her baby in the stroller. How's motherhood? I ask. She smiles, and begins to list all the reasons her baby is the greatest miracle to ever roll the earth. The kid is cute.

Beside me: "We're at the wrong place! Last time it looked different!"

Oh, I get it. G. remembers last year when she chased the loose prairie dogs around the grass near the other entrance while we waited for T. to park the car. But she's not going to get it, if I try to explain.

"Just a second," I tell my friend. "G., don't worry, we'll find some prairie dogs. They live in more than one place at the zoo."

As G. continues her rant, I ask my friend, "So what's new?" One eye on G., the other on my friend.

This worked out great, I think. I don't have to walk through this place alone. I have another adult to chitchat with, to take my mind off the racket at my hip.

"Well, it was nice to see you. I'll catch you again sometime when you're not in the middle of a crisis," and my friend walks away, her baby cooing softly.

I almost called after her: "Okay - I'll see you at Donwood Manor then! We'll have tea!"

When I'm not in a crisis? You mean other moms can predict which moments will be crisis-free? (And this isn't a bad crisis: I haven't even had to call security yet!)

I'm reading The Explosive Child by Ross W. Greene, a "new approach for understanding and parenting easily frustrated, chronically inflexible children." Greene says the way we've been taught to parent - being firm and consistent in enforcing rewards and consequences - works to motivate kids who can comply, but doesn't help children who lack the skills to do what we're asking. (Makes sense: a fat raise might make me a more consistent blogger, but would never make me into a good accountant!) In fact, being inflexible as a parent doesn't teach the inflexible child what they need to learn most, which is, flexibility!

Some of the skill deficits Greene lists that cause kids to go "kaboom" include: difficulty expressing needs in words, difficulty managing emotional responses to frustration in order to think rationally (imagine perpetual pms), difficulty deviating from routine (different zoo entrances are a bigger issue to some of us than others), and difficulty imagining the consequences of their actions or their effects on others (G. has no idea she's embarrassing me in front of dozens of zoo patrons and peacocks).

The part of Greene's book that keeps coming back to me is one of his conversations with a mother whose son exploded/bolted regularly at the grocery store. Greene convinces her that she needs to listen to her son to learn why he finds the store so challenging, do some collaborative problem solving, and avoid taking him to the store for a while until he's developed some more skills.

Mother: But he can't avoid supermarkets forever, right?
Answer: Right. Luckily, going to the supermarket isn't critical to Eduardo's existence right now.
Mother: What about my existence? It's not always possible for his grandmother to watch him for me while I'm at the supermarket.
Answer: Yes, I understand. But it's even harder - and a lot more detrimental to your existence and your relationship with your son - to have him exploding every time you take him to the supermarket.
Mother: I don't know anyone else who can't bring her kid to the supermarket. This is ridiculous!
Answer: You're on a different playing field from people who don't have any trouble with their kids at the supermarket.

On a different playing field. Sometimes it feels like a lonely one.

I asked another mom if she'd do a few respite days for me over the summer, and she responded, "No, I want to be able to go on spontaneous day trips with my kids." Me too! That's why I need respite!

For example, to go to the water park, I have to find a sitter to stay home with K., because that's one place he can't manage. To go to the beach, I have to need a friend or sitter to go with me, because while other kids can do "zone," mine require "man-on-man" defense - particularly when crowds, water, and moving vehicles are in the mix. When we go to the store, I have to be prepared to leave my cart and walk out the door with nothing. All my plans are tentative, because I never know whether my kids will manage at school, camp, the sitter's, or whether I'll get a call to pick them up now.

I don't compare myself to other families like I used to. I know there are places they can take their kids I can't, and other places they can relax while the kids play and I have to stay hyper-vigilant to make sure no one gets overwhelmed, explosive, inappropriate, or lost.

I don't beat my head against the wall (except in my weaker, pms-type moments) because I can't do things other parents can. But I do wish it was easier for them to come alongside me.

We could walk the wrong way to the prairie dogs together.

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.

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.

Mmmm.

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.

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.

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!

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.

Just because it's cordless, doesn't mean we're not tied together

I'm attached to my kids at the hip--at least when that's the pocket where I've put the cellphone.

Apparently the school was trying to reach me all morning because K. was crying that his mouth hurt. Probably canker sores. When I finally talked to the principal at lunchtime, she said they'd run out of ice packs and Popsicles. So there went the entire morning (the only time he has an E. A.) of educational possibilities out the window.

Friday he didn't get anything done in the morning because he was too tired, so we put him back on Melatonin (herbal sleep remedy). All last week he had regular blowups before lunch, but I'm grateful that the staff diffused the situation and just informed me about it when I picked him up. On Thursday they would have called me, but they thought I was teaching in another city, so I enjoyed my day off in blissful ignorance of the ten-year-old tornado one block away.

Unlike many other mothers I talk to, I don't often have to go in to fix things. But the school does want me to be waiting on the other end of the line. Poised at any moment to give the teacher ideas, comfort K., adjust the meds, confer with the psychiatrist, or take K. home if necessary. The beginning of the school year was the hardest: I had daily phone calls telling me what a hard time he was having.

Today I let them down: I forgot that my cell was still on vibrate (from the graduation ceremony I was involved in on Sunday) when I went for my physical and the groceries, and I forgot to take my cordless outside when I was snipping and bundling apple tree branches. (In my defense, I did check my answering machine regularly.)

I feel like a C.E.O. tied to my phone, except these aren't my employees, they're my children. I thought once I sent them to school full time I would be free to make my own plans.

And I can, as long as I keep the ringer on.