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.

Me, myself, and I should

I am in a sun room in beautiful British Columbia, feeling sun-kissed and wrapped in mountains. In the past three days I have eaten fish and chips beside the pier in White Rock, dipped my toes into the ocean (wearing a hoodie and coat), and walked the entire Stanley Park sea wall surrounded by sailboats, rocks, trees, birds, and happy people.



I've also spent eight hours in interviews, one hour wandering in the rain looking for a quiet restaurant, two nights at a hotel they forgot to clean, and one sunny afternoon stuck on a highway replete with lane closures and turnoffs you can't see until you've passed them.

The "should haves" keep popping into my head: we should have left earlier to avoid traffic, we should have taken the detour, we should have walked to that other beach, looked at that map, stayed at that hotel.

I wish I could have left myself at home and come without me.

I'm supposed to be relaxing. The school doesn't have my number, my kids don't need me, and my laundry piles and litter box are three provinces away. But it seems I've spent so much of my life in "to do" mode that I don't know how to relax. So many people want me to enjoy myself on this trip that I feel like I have to account for every minute well spent. Pressure.

When I'm having a hard day, thinking about how God can turn it into a story fires me up with courage to keep going or to do the next hard thing. I think about not just my work, but my life as being a book for others to read. It keeps me accountable and charges every little faithful decision with eternal significance.

But sometimes, like now, thinking about my life as a story makes it harder to live in the moment. I wonder if I should stop even writing about it, because it can just reinforce the idea that I'm part of one lifelong performance evaluation.

You can't evaluate happiness. The minute you ask yourself, "Am I as happy as I could possibly be sitting here in the sun under the mountains, or would someone else feel happier than I do right now if they were here?" all your happiness flies out the sun room window.

Enough with the "shoulds," already. Maybe I'll just make some of my happy moments my little secret, so that you, and I, don't have to evaluate or rethink them.

In traffic and in the sunshine, I'm stuck with myself, so we may as well make the best of it. Patience. Construction always means "expect delays." Especially in B.C.

A time to love

There is a time for everything,
and a season for every activity under heaven...

a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

a time to search and a time to give up,
a time to keep and a time to throw away,

a time to tear and a time to mend,
a time to be silent and a time to speak,

a time to love...
time

I don't like getting flowers. Oh, I love flowers. I spend hours playing in my beds of daisies, roses, lavatera, petunias, and flax. But I don't love receiving bouquets because I don't have a lot of counter or table space. And most cut flowers come in my least favourite colours: pink, orange, and purple. My kids ensure there's enough mismatched clutter on every flat surface without anyone sticking vases of orange everywhere. I feel guilty, but when I stare across the table at flowers where the face of my husband should be, inside I'm chanting: "Die. Die." (To the flowers, not my husband.)

And I don't always like getting hugs. Sometimes it feels like I'm being held captive (particularly if they come when I'm in the middle of something), other times it feels like bugs crawling on my skin. I love the thought that comes with a hug: "Oh, he or she must really care about me," so I don't want people to stop doing it. But the feeling is sometimes kind of icky.

I don't always like complements, either. If they are specific ("You have soft hands." "I loved your story on kids with anxiety disorders."), I know the person has thought through it, and I assume they are sincere. but if their praise is too general ("You look nice." "You are a good writer."), I wonder if they really mean it or if they have a motive for their flattery. (Incidentally, parenting experts say we should be as specific as possible in our praise to children: "Your floor looks so clean" sinks in farther than "Good girl!" Maybe I think like a kid.)

So, if you are up on your love languages, you'll know that mine is not gifts, meaningful touch, or spoken words.

I have many friends who care about me. I can call them for prayer. They ask how I'm doing. They hug me every Sunday at church. I feel loved.

And lonely. Because my love language is time.

Most of my friends are married with several kids, a full time job, a house (in many cases, on the other side of town), community and church involvements, and extended family (maybe even parents or grandparents needing care). The one thing they don't have is time.

Unless...they are campers. Camping is all about time. Things we normally rush through, like cooking, washing dishes, making beds, are slowed, simplified, and done together. We have time to gather stones, time to speak, time to embrace, time to stop in the middle of the highway and take photos of a giant snapping turtle, who is also very slow.


We bought a camper trailer this fall. It's old. It's cramped. The first time we set it up at a campsite was in the dark, in the freezing cold, with both kids running wild. The second day we broke the light fixture (wiring was worn) and two flashlights. We bought another one at the campground store. And we broke that too (kids mistook it for a lightsabre). We were dark. We were cold. We were together. And I'm glad.


A while back, I asked my pastor to pray that I would make a new friend. Lucky me, I met a camper.

My kids get along with her kids. My kids get along with their dog. Our husbands have things in common (Blah, blah, Mac OS, blah, blah, Windows updates). We spent the weekend together in the bush collecting rocks, roasting marshmallows, and taking pictures of creeks and waterfalls. (And dragging angry turtles off the highway by the tail.) I don't know what we'll do next.


But we have time.

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.