Go ahead: be awesome (chihuahuas be darned)

I just met a therapist who told me to shoot chihuahuas.

He said anxiety is like a chihuahua yipping and nipping at our heels. We all accept that it's there, and no one does anything about it because we think we can't. But one day, you're walking along with your friend, the chihuahua yipping behind you, and you tell your friend to wait a second. You pull out a gun, and you shoot that chihuahua. (It's more of a rat than a dog anyway.)

I said, "Wait a second, are you saying it's okay to shoot chihuahuas?"

"Yes!" he said, bouncing in his chair. "Shoot the chihuahua!"

 Okaaay. He seems like a nice man, so I doubt he has a mass puppy grave under his tomato plants. While his metaphor is a little shocking, his message is even more unbelievable: it's possible to live without anxiety?

Yes, he says: without the fear of death or what other people think of you. I'm curious how that happens.

I do have less anxiety than I did in my twenties (See my first blog post), but this spring I slipped a bit. There was a lot of uncertainty with trying to find G a school for next year, a lot on my mind with the final edits on my book, the stress of working overtime hours to proof publications in time for an AGM, a little water in the basement, a pair of kids with ear infections, a dead water tank, bills, bills, bills. I had trouble sleeping, which fueled the cycle.

My book will arrive in the mail this week, and I've been having nightmares that instead of poetry, it turns out to be a cheesy murder mystery and my mom hides all the copies in her freezer.

Obviously, I'm nervous: will people buy the book? Will they like it?

I just remembered this from my daughter's last music therapist's report:

"I just feel like being awesome for a moment" is what she said before playing an amazing rendition of "He’s A Pirate" along with the recording.

That's my girl.

It's not easy being 14 and on the spectrum. She adjusted to a whole new group of teachers and classmates two years ago when she moved from public to private school, and now she's about to start over with a whole new set of people and expectations as she enters high school. We both have a few things to be nervous about.

This past winter, she wrote a song at the piano that goes something like this: "l am safe through the day because God washes all my demons away." (Then she complained that all her songs turn into worship songs even when she doesn't want them to. Officially, she's a skeptic.) 

Demons. Mental chihuahuas. It's hard to ignore their yap. But even if we don't know how to completely shut them up yet, why not enjoy a few minutes of this music instead:

I just feel like being awesome for a moment.

(Say it with me. Feels good, no?)

So here's the most awesome thing I've been working on for the past five years (and the main reason I've blogged so little): my completely frost-free non-murder-mystery poetry book about autism, Tell Them It Was Mozart (in bookstores Sept. 1, 2016).

Read the book's description here: www.brickbooks.ca.

Join me at my Winnipeg launch at McNally Robinson Oct. 17, 2016, at 7 p.m.
For more event dates, visit my other blog, 37 Mice.

My daughter cried herself to sleep; it made me happy

I didn't enjoy watching her heart break, but the reason she was sad absolutely thrilled me.


G has two emotional settings: angry and bored. Occasionally, she'll be mildly pleased. Joy and sadness rarely enter the mix. So I was surprised the other night when I entered her room to investigate the strange noises, to find her with tears pouring on her pillow. She was hugging a drawing of a sunset from a classmate (the only other one on the spectrum) who'd been home sick all week.

"I'm nothing without her," G sobbed. "I have nothing to do at recess except stand there. She's the only friend I have at school who doesn't hate me."

G tore the words "To my bffL" off the top. "Why?"

"Because that's the part of the picture that makes me saddest about her being sick. I want her to feel better."

She let me hold her and sweep her wet hair out of her eyes. I hated seeing her in pain...and yet. Here was my usually blunt child, assessed as lacking age appropriate social skills, range of emotions, and awareness of others, crying for a friend in pain.

"Is it weird to cry for someone else?"

No, honey, not weird. It's called empathy. It's called affection.

And it's a very good thing.

Top 11 blessings of 2011

As I reflect on this New Year's Eve, may I present to you Plaiditudes' Top 11 Blessings of 2011:

11. Thanks to the ones that brung ya (and me): 

Okay, this one isn't new, but I as they get older, I appreciate my parents and in-laws more and more. Mom S with her love pats and fussing over us, Dad S's encouragement and confidence in me, my Dad with his sense of humour and desire to help (and the way K is his "co-pilot"; hopefully someday little G will be his co-something special too). And my Mom, because for better and for worse, she's that voice in my head and I wouldn't be me without her. They've had a few health scares in recent years, and I treasure every day we have together.

10. Yay for me!

Health and Heart winning 2nd place for Canadian Church Press Christian column of the year went by unnoticed, at least in Christian Week, but it was an affirmation to me that what I'm doing is valuable. I explored more personal, controversial, near-to-my-heart topics this year, particularly in the area of mental illness (schizophrenia, borderline personality, and depression), and had the pleasure of interviewing some dear friends.  

9. Who says the internet makes you antisocial? 

The Autism Winnipeg Facebook group has put me in touch with some wonderful parents in my area for support and friendship, both for us and our children. G just had a play date with a new friend we met through Facebook, and it went well, so three cheers for technology!

8. How do I love poetry, let me count the groups...

I finally got the nerve to attend poetry readings, particularly Speaking Crow at Aqua Books (soon to be moved to Pop Soda) the first Tuesday of every month, but also Writers' Guild events and McNally book launches. The Blue Pencil workshop with Jennifer Still was so encouraging, and I've started a poetry group with another writer to comment on each other's work. I had a couple lovely coffees with Sarah Klassen (still my favourite), and through their books, I feel like I've gotten to know local poets Ariel Gordon, Sally Ito, and Di Brandt. So great to be part of a writing community!
   

7. Come on baby light my marshmallow

We bought our pop-up camper at the end of 2010, but this was our first full summer of swearing sweating as we set it up under the shady oaks of campgrounds around our beautiful province. The only major mishap was the breaking of the bike hitch on the train tracks in Morris. We enjoyed a sunny, mosquito-free summer of bonding as a family around the campfire.

6. So long and thanks for all the funding
We are so grateful that we finally received Level 2 EA funding for G for Grades 4, 5, and 6. The process of painting your child with horns just to earn necessary services stinks, so I'm glad I don't have to go there again for a few years. So far, Grade 4 is much smoother than Grade 3, so: yippee!

5. A dog by any other name would smell too

In September we picked our Lily. T should have gotten a picture of me leading her out of the Humane Society: I had the deer in the headlights, oh crap, what have I gotten myself into-look down pat. But she's lovely. She sheds, she digs, she chews, but she's also very quiet, affectionate, and trainable. No regrets here.

4. Sleeping with the Paparazzi 

This is the year I got into poetry and my hubby got into photography. Big time. Unfortunately, his little hobby is a tad pricier than mine. Semi-pro camera, 40 mm lens, zoom, camera bag, tripod, blah, blah...versus...my pen. I win and you owe me something pretty. He's done a few family shoots, so that helps pay for all the photographic "necessities." And hey, he's happy.

3. Very good, young Padawan, but you still have much to learn

My most exciting news of the year is that I'll be mentored for the next five months by award-winning poet Meira Cook. We meet for the first time next week. Have I told you today how excited I am?

2. Still working for a living

I am soooo grateful that my one-year maternity leave position at the Herald that could have ended this summer was extended till next June. I love being part of the creative process of putting together a beautiful, thought-provoking, community-creating magazine, I love the flexibility of putting in my 65 hours per month from home/office/when the kids are in school/I have a sitter, and I love bringing home a regular pay cheque!

1. And the academy award goes to...the Academy

The best thing to happen to our family this year was a new school for K. Words can't describe how well he's doing or how grateful we are to his teachers. He's now in the classroom all day, participating in group discussions and independent work, even in math, like everybody else. No longer wandering alone at lunch, he's now playing street hockey in the parking lot with his classmates. He made a marvelous Moroccan professor in the social studies fair, and was very proud to receive an honour roll award for his 88 percent average in the first term. It's wonderful to see him smile every day when he steps off the bus.

Hope your 2012 is full of love, support, and poetry (or love, sports, and punk music, whatever turns your crank).  

Happy New Year!

The fall of never wills

This is the fall of never wills.

With two kids on the spectrum, a husband with chronic headaches, three part-time writing contracts, church responsibilities, and a rabbit, I don't take on extra things lightly. There were certain things that I said I'd never do:

1. I never will take in boarders,
2. I never will get a dog,
3. I never will put my child in private school.

I need a nap the day after overnight company because I can't rest when other people are around; how could I ever relax with people in my house 24/7? I don't even like other people's cute little pooches yapping and jumping on me, why would I want to scoop 15 years of poop for my own? And why pay thousands of dollars and drive across the city for an education when there are good public schools down the street?

1. The boarders: This fall, our niece and her husband needed a place to stay until they found their own apartment in the city. I didn't feel an immediate "no" inside, so I figured it must be a good idea. After all, it would only be temporary, and if I had to pick someone, another introvert who has to still like us next Christmas (and every Christmas after) is a safe bet.

It was a good incentive to clean out the guest room closets, rearrange the basement, and shampoo the carpets. Two weeks of work and ten years worth of outdated computer equipment we wouldn't have gotten to without the deadline of boarders.

It's been a good experience. With extra adults around, I can run out for a few minutes without taking K and G, and finally more than one other person at the table appreciates my cooking. I like having someone to talk to about my day (I think my husband likes the break too). K and G love the extra attention from people younger and cooler than their parents. I admit, there have been moments when I wanted the privacy to yell at my own family in peace, but for the most part, parenting for an audience has kept me more patient and thoughtful.


2. The dog: All summer when we'd go camping, G would stand at the entrance to our site and wait for a dog to go by. She'd introduce herself, name the breed (she knew every one), and ask good questions. She didn't always wouldn't read books about anything but dogs. All her computer games were dog grooming games. She wouldn't always play with other children, but every dog was her friend.

I decided to go to the Humane Society and take a look. We talked to an adoption counsellor about what we were looking for: a small, quiet, mature, well-trained dog that's good with children and rabbits. Basically, I wanted Jesus with fur. The counsellor told us about a corgi cross, rescued from a reservation, that would be available the next day, and we could put her on reserve. We came back the next day, and after passing door after door of giant dog trying to break through windows, when they let the corgi into the room, she walked up to us, sat in front of us, and licked our hands.

Well, that did it. We've had her for a week and a half, and she's the sweetest thing. Lily wasn't trained when we got her, but she's caught on quickly. She follows us around the house and lies at our feet. I couldn't imagine any dog but Lily. She's a German shepherd on corgi legs, so she looks ridiculously long for a dog so short, but who could resist those eyes?

You will love me...

3. The school: After a couple difficult years of public school for K, we started looking into a specialized university-entrance school with small classes and teaching modalities geared toward ADHD. He had to switch schools anyway, since our public school only goes to grade 6. The bus stop is 2 km away, so waiting in the car for the bus twice a day adds an hour to my day. And the tuition is insane. But it is so worth it. No more daily calls from the school. No more wasting years in the library with an EA. No more being the one supported kid in the class. No more picking him up at all hours of the school day in tears (usually mine). When he jumps off that school bus, he's smiling. I bet he's learned more in the past month than he did in the past two grades. Private school definitely has its place.

So I'm a private school bus-chasing, poop-scooping landlord. Yeah. It turns out all the things I thought I couldn't handle, I can. I'm stronger than I thought. My heart is bigger than I thought. And that's a good thing. Who knows what Ange will tackle next?

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.

Funding granted!

G's funding appeal was accepted! For the next three years, she'll have an educational assistant for half of every day. I expect that means Grades 4-6 will be happier than Grade 3 has been, and there will be fewer days when she says "Everybody hates me" or "I had to work in the office" because the principal was the only one available to help her with her math. 

We're meeting this morning with her teachers to debrief on this year and plan the next. (And they've only scheduled half an hour?) My wish list? An angel who will sit by her shoulder and whisper in her ear everything she needs to hear:

Take a deep breath.
We have music next.
Don't forget to carry the one.
Your lunch bag is in the hallway.
Your group is starting on the climbing wall.
If you tell me what you did on the weekend, I can write it down for you.
You can do 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....