Tuesday, December 31, 2013

13 happiest moments of 2013

Here are my happiest memories of 2013 in pictures:

Disney World with my husband, kids, and parents (April). When we went 5 years ago, my daughter and I had a meltdown in the happiest restroom on earth, but this time, even though the official story is that we're both too old to believe in fairies, we felt the magic.

Attending the Sage Hill Poetry Colloquium to work and birdwatch with Don McKay, who, it turns out, believes I'm a poet (May).

Being in Prairie Fire (July) because you have to admit, that's pretty cool.

My 40th birthday party (July) planned by my loving husband and attended by poets, autism moms, church friends, mentors, and crazy cousins alike. Here I am with Sally Ito, laughing at other people's poetry, not because it's bad, but because it's about me.

And of course, my shiny birthday present from my parents.

Camping at St. Malo, Falcon Lake, and West Hawk (below). I live in a sunny province of lakes and horizons.

Dancing (badly) and hanging out with my Froese family at my cousin's wedding (August).

Reading my "To make an Aspie" poem with jazz trumpet and bass at Thin Air (September).

Dancing with Barbara Schott (centre) of Prairie Fire (who remembered publishing me as soon as she heard my name), Marjorie Poor (right) who always makes me smile, Margaret Sweatman, and Jennifer Still at the CV2 Undead party (October).

My disabilities article Can I give you a hug? (October), the highest trending mbherald.com story in 2013, that's being used by churches of all denominations as a guide for building inclusion and that brought me closer to delightful parents like Jeannette (below with her son Donovan).

Hope Centre Ministries all-day photo shoot with my husband (November). Some of the adults with disabilities we photographed had never had a professional photo taken before. As you can tell, they were a joy to capture.

My children's successes, which include: for K, a provincial science fair bronze medal, the lead in the school play, an award for creative writing, a certificate for honour roll with distinction, and his first 15-mionute presentation (on aircraft engines) at air cadets - which he too claims as his bravest moment of the year. And for G, staying on stage through the whole school concert (last year, we celebrated the success of staying up for a single song), a brilliant dramatic performance in her Sunday school Christmas drama, composing and performing a piano piece at the church Christmas Eve service, and no meltdowns over Christmas presents.

And of course, my Lily, who makes me happy every day of the year even though when I got her two years ago, I didn't like dogs.


There are also some things I can't photograph, such as finding a spiritual director and a massage therapist who helped keep me breathing normally in the less-than-happy moments.

All in all, it was a good year: I danced, I wrote, I was loved.

Monday, December 23, 2013

A bittersweet, chocolate-free, merry Christmas

Here's the story about how I visited my brother C for the first time in months.

They warn me he's been less upbeat lately. They warn me he's grown shaggy.

C doesn't cope well with the excitement of family gatherings, so my family stops at his place after Christmas dinner at my mom's.

My mom calls ahead to ask about his mood. The staff report it as so-so.

Mom says, Well, you've seen it all before and can handle C as well as anyone.

Brother T, who comes home every chance he gets, especially at Christmas, tells me, You've suffered enough at his hands. I find this rather eloquent and just a little comical.

I'd bought each of my brothers a giant (1 kg) Cadbury chocolate bar (tasty and fair trade). T got a hoot out of it. My parents had to take turns lifting it because they couldn't believe it was all one bar. Good times all around.

But when we're about to visit C, T says, He won't be happy about this; he's not eating chocolate anymore. Seriously? Yes, apparently, the former powerlifter has eschewed all sweets on this recent health kick.

Would he like a ribboned bouquet of broccoli, then? Nope, He also throws away his veggies. (My family isn't known for our logic.) 

I guess I'll just give him a hug, I say, and wait for T's reaction. I laugh: Don't worry, I value my life!

Of course the rest of the family and the staff know the chocolate taboo. Sister who hardly ever visits and never gets calls is the only one out of the loop.

So always-helpful mom rummages through her closet of goodies and pulls out a mug with a cartoon about exercise: "Why would I punish my body for something my mouth did?" - acceptable since he still drinks coffee (but only at home), except that it's got a little too much pink on it for a 6-foot-tall, muscular guy in his 30s.

A Tim Horton's card? Nope, he's cut out his favourite chilli too. They say now he'll only be seen in a Smitty's. Who knew? Everyone but me, I guess.

Mom finds a tin savings bank that say "MY wish foundation: please donate." I throw in the loonies from my wallet (not many - his staff are going to think I'm a real cheapskate.) And off we go to see what kind of C we'll find.

A bushy, lumberjack-like fellow sipping coffee greets us with a smile. I hand him our family Christmas photo. He comments (more than once) about how my husband is balder, my son is taller, and my daughter looks like me. He can't stop looking at it. And us. 

He reminds me over and over that I'm 40 now, and he'll always be younger (because what are little brothers for?).

I meet two of the staff - who've worked at T and C's house for a year - and that makes me feel bad. They offer us what C's drinking.

C brings out one of the maple walking canes he's been making and selling. He tells me where he finds the trees on his staff member's yard and makes sure I understand how hard he sanded it to get it that smooooth. I marvel at how white the wood is and tell him it feel lovely because it does.

As we drive home, I think about T's comment about how I've suffered.

T was only 11 when I left home, so he and I don't have that many memories of growing up together. He was born when I was 6 1/2, so he was more of a doll than a friend. (Who needs expensive plastic babies that eat and pee when you have the real thing?) And T's interests are more in line with my dad's: whenever possible he was in the shop handing my dad the correct screw drivers while I stayed inside, as far as humanly possible from anything motorized.

C and I are only 3 years apart. The sandbox, swing set, playhouse, and toy room in my mind always have a C in them. We built roads and demolished bridges. We made up crazy tag games. We ran our own circus. What people don't understand is that even though we couldn't discuss deep thoughts, we did share feelings: hopes, fears. Lots of laughs.

I wonder what "suffering" T is remembering: The dinners interrupted by screaming? The times my arm got in the way of a meltdown? That's just life. (And for T who lives with C, it's still life.)

I don't blame C for the past any more than I blame myself. We've both done the best with what we had.

And I don't blame him for the fact that he's been less agreeable lately. I've had my down days too.

And while I prefer clean shaven myself (and worry that some may judge him for the woodsman look), I'm proud that he's independent enough to choose his own style. We all have to go through a messy stage where we find our voice and say to heck with what others think; for me it was in college; maybe this is his time. I wonder if his self-imposed diet comes from the same need as well.

I feel like this post lacks resolution, like I need to end with "I'm going to visit C's house more often" or "My Smitty's gift card is in the mail." But maybe this post is like life: a story without a clear moral or tidy ending.

The only conclusion I can draw right now is that I love my brothers. Sometimes poorly. Sometimes passionately. Sometimes silently.

Sometimes by not giving them chocolates. Sometimes by not bugging them about shaving. Always without hugs.

And that's a story (lovely and messy) I'm not done writing.

Monday, December 09, 2013

Our one-of-a-kind gingerbread...courtyard

This weekend, we made our annual gingerbread house. We got a fully assembled, ready-to-decorate kit that promised to come out looking like this:

But when we opened the box, the house was broken. We tried to glue the roof back together with icing. 

But it wasn't working. I kept thinking, I hope this isn't a metaphor for my life.
We added more and more icing, and held as still as we could, but it just didn't stick.

We decided to make the best of it and do our own thing.

The good thing about going roofless is you get to decorate inside too.

We even rolled out the red carpet.

 And invited in some Christmas friends.

Maybe this isn't such a bad metaphor after all.


Friday, December 06, 2013

what little girls are made of

I've been getting a lot of calls from my daughter's school the past two weeks. She's extra emotional. Not sure if it's holiday stress, the start of a flu, end-of-term fatigue, or hormones (gah!), but it's been tough for her lately.

When I was a kid, if a call or note came from school, there were consequences at home. That's not my philosophy. G may or may not be aware that I know about her day, but my take is if she's already spent two hours processing strategies and delivering any necessary apologies at school, why hash it through all over again?

When she climbs into my warm car, drops her boots at my backdoor, and flops on my sofa to watch Sponge Bob, she's safe. It's a fresh start. A new day begins every afternoon at 4:00.

Tonight, after a day of tears, she wrote me a new song on the piano, and I cheered. She improvised a mime production of Hansel and Gretel, and I laughed myself silly. We watched treadmill mishaps on YouTube and read a story about stray cats. I gave her a massage and a kiss and hopefully the confidence to try again tomorrow.

Being an 11-year-old girl isn't sugar and spice; it's more like crumbled tissue and crash helmets.

Maybe it's up to parents to add the sugar.       

Friday, November 15, 2013

Just the ticket

I'm tucking my daughter into bed. I hear a click under her pillow.

Do you have your DS?


I reach under her pillow and pull out the DS.

Because you lied to me, this is going away till tomorrow.

This is one of those parenting reflexes that usually escalates kids on the spectrum. And it does. 

She yells, But if I'd told you, you would have taken it away anyway because it's bedtime!

Maybe. But I probably would have said, "Thank you for telling me the truth. You can play for 5 more minutes."

After much screaming for second chances (which I might be tempted to offer, had she not been screaming), she resorts to logic:

If you saw a homeless person crying on the street, how would you feel?

I'd feel sad for them.

So why don't you feel bad that you made me cry?

I do feel it when you're sad.

Okay, and did your parents ever make you cry?

Sure, sometimes.

And didn't you tell yourself, "I'm never going to do that to my child?"

(Really? For a kid who supposedly has difficulty putting herself in other's shoes, she's quite good at psychology.)

So I try again to explain the difficult concept of "consequences": Yes, my parents sometimes made me cry by saying things they shouldn't have, and I try not to do that to you. But there are other times when they did the right thing by teaching me right from wrong even though it made me sad. It's like when a police officer makes me pay a ticket for speeding. The ticket makes me sad, but it helps me remember not to go so fast next time.
Who cares about a ticket? You have lots of money left.
This from a kid who thinks an armload of pennies makes her a millionaire.

Um, well, I do have some money in the bank, but I use most of it to keep our house warm, and our car running so I can take you to swimming, and the fridge full of food you like, and I pay for your brother's school and braces and your clothes and haircuts. There's almost nothing left for the things I want, and if I get a ticket, there's even less.

She sneers, Wow, you sure buy a lot of boring stuff...

I look away for a second, and when I look back, her eyes are full of tears. You'd do all that for me?

She throws her arms around me. I snuggle in beside her. Minutes later, she's asleep.

Saturday, October 05, 2013

Can I give you a hug?

I've published a few things about disabilities recently.

One was an article about disabilities in the church in the MB Herald. It started with a Hope Centre conference on inclusion last spring, where I met many families with stories begging to be told.

One was singer/songwriter Brain Doerksen from B.C., whose children have Fragile X, the same genetic condition as my brothers. One was my former coworker Jeannette, pictured below with her son Donovan. Some were new friends with children on the spectrum.

Read my article: Can I give you a hug?

photo by AnthonyMarkPhotography.net.

In these conversations, I was struck by how many small things came up that people can do to help families with disabilities. (The print version only had space for a handful, but the online story has the long list.)

After I wrote the story, I met some autism moms from a Facebook group for coffee. When one heard my last name, she asked whether I belonged to a church that held "free garage sales."

"Yes, why?"

"Because a few years ago, when my daughter was just diagnosed, I met a Schellenberg at a church garage sale who listened and made me feel cared for. That must have been you."

I would never have made the connection between the woman I'd just had a coffee with, and the mom on my church lawn. The fact that she remembered proves how important the little caring things we do can be! (And it reminds me to choose my responses carefully because the uncaring ones may prove equally memorable!)  

I also have four poems in the latest issue of the online disabilities journal Word Gathering: It's a Boy, Pain Threshold, Stigma, and Drug Trial. Read them here.

Wednesday, August 14, 2013

Is there a doctor in the house? (Part 3: Smarties)

We need to see each other as Smarties. 
At one of my monthly meetings with my spiritual director, I told Therese about someone who was putting me under pressure. Therese said, that’s not really her that makes you feel that way; that’s her shell. Her inside loves and accepts you. But we’ve all got hard shells we put around ourselves for protection, and it’s those shells that want to control others so we’ll feel safe.

I said, you’re making me think of a Smartie. I like the idea that everyone in my life has a chocolaty centre!

Therese said, It’s the soft insides that Jesus sees. That’s what we need to look for in each other too. Look past the hard shells that keep knocking against each other and look to the centre. Eventually we’ll all lose our shells anyway: either by allowing the Spirit to open them, or by become too weak to hold the shells on. 

What does inclusion look like?

Here’s an example from the Hobbit. The wizard Gandolf, 13 dwarves, and the small hobbit Bilbo are on a quest to recover the dwarf kingdom from the dragon Smaug. The dwarves are unsure of timid Bilbo’s worth and usefulness, holding him at arms’ length. Just before this scene, during an attack by Orcs, Bilbo protected the dwarf king Thorin, and the company, including an unconscious Thorin, have been rescued by giant eagles.      

Thorin wakes and tells Bilbo: “What were you doing? You could’ve gotten yourself killed. Did I not say you would be a burden? You would not survive in the wild? That you had no place amongst us? I’ve never been so wrong in all my life.”

At the same Hope Centre conference where I heard about the puzzle pieces, I met worship leader Brian Doerksen. We sing many of his songs in my church, including "Faithful one" and "Refiner's fire." He was there not first of all as a song leader, but as a dad of two sons with Fragile X. He said his greatest need in the church was for people to see his boys. Parents of children with disabilities tell me over and over “We feel so invisible.” Jesus saw and spoke up for and ate with the tax collectors and sinners as a sign of acceptance. 

In our story, Jesus the doctor is healing not only individuals, but a fractured community. He’s piecing us together into a multi-coloured puzzle, calling men and women to arise and follow in a new resurrection life, to become his assisting physicians, in recovery together, to be a community that looks past hard shells to sweetness within, to welcome others to the table.

RESPONSIVE READING  by Lynell Bergen (Hope Centre)
Lord, we come to you today with gifts and challenges.  We are a diverse group, but we can all agree:
                Jesus loves me, this I know.
Some us of struggle with the realities of aging:  ears and eyes, knees and hands that don’t work as well as they used to.  But some things stay the same:
                Jesus loves me, this I know.
Some of us can’t keep up with reading the PowerPoint, or with all the words in the sermon.  But we do understand:
                Jesus loves me, this I know.
Some of us live with depression or other mental health challenges.  It can be hard to believe:
                Jesus loves me, this I know.
Some of us are strong and independent.  We assume our hard work earns:
                Jesus loves me, this I know.
Some of us are made fearful or anxious by crowds or noises.  Can you say it quietly:
                Jesus loves me, this I know.
Some of us can’t speak.  But we can hold up our hands to say:
                Jesus loves me, this I know.
Weak or strong, worried or self-assured, lonely or cared-for, we all need to experience Jesus’ love through others around us.  So let’s say it together:
                Jesus loves me, this I know.
                Jesus loves us, this we know.
Thanks be to God.