thanks for all the giggles

 

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I was recently dismayed to discover that I’m stumped for conversation when I get together with moms who don’t have a kid with a disability. I immediately dive into heavy topics, and seem unable to engage in simple chitchat. I fear that I’ve socially segregated myself. Too much heavy.  Not enough fun.

Aaron is 11 years old and I am still in need of peer support – perhaps as much as I did when Aaron was first born. I am very fortunate to have a handful of super women to lean upon. If I’m stuck for a strategy or I just have to vent, there’s a flurry of texting, emailing and calling. Us moms rarely get together for something else, however; we rarely get together to have FUN.

On Saturday night, I went out with four other Down Syndrome Moms. To clarify, the moms did not have Down syndrome; but we all have kids with Down syndrome. (Only moms with kids with Down syndrome will find this wordplay amusing). There was a food and wine festival at our convention centre. It was like a massive trade show for eating and drinking that morphed into a rowdy crowded bar scene as the evening wore on.

We got dressed up, teetering on heels & sporting sparkly outfits, with $20 bills stuffed into our purses. Our husbands dropped us off downtown, and we spent the next four hours gleefully spending coupons at booths for charcuterie plates, mac & cheese, chocolate and cupcakes. We cruised around for little samples of flavoured vodka and fruity beer. Every once in a while, we paused at a stand-up table to chat.

As organizer, I took it upon myself to offer only one rule: No talking about school. No talking about our kids’ school situation; how many times we’d been called by the principal last week; how our kids get zero birthday party invitations; how we struggle with funding to support our kids; how curriculums aren’t being adapted. Talking about what became known as the ‘s’ word was not allowed. If you mentioned the ‘s’ word, you’d have to buy the posse a round of drinks.

This was effective and surprisingly freeing. We were liberated from a topic that normally dominates our conversations. I guarantee that anybody who has a child over the age of ten with any sort of difference is obsessed with the education system. Instead, we talked about current events, politics, fashion, food, favourite drinks, movies, music, and winter holiday plans. It was terrific and awfully normal. There’s certainly a time for advocacy and venting. And then there’s a time for fun.

Cheers to you, my awesome lady friends. Thanks for all the giggles. xo.

the summer list

IMG_5079Since I own my own company, I can take time off whenever I want.  I love this autonomy, although I do not get paid for vacation, which hurts the next month when my paltry invoice payments come in.  I’m not complaining.  For our family’s life, this flexibility is worth it.

Every spring, I start vibrating about arranging summer childcare for Aaron.  For my clients do not halt work over July and August, and I need to be available to them.  Each April, I lie awake at night, contemplating our options:  regular babysitter, day camp (segregated where I don’t need to hire an aide, or inclusive where I do), lean on older siblings, take conference calls in the bathroom on mute with kids screaming in the background.  None of these options are appealing for the entire eight weeks that is summer vacation.

Two years ago, Aaron had a really challenging year in Grade 3.  So much so that we sold our house and moved in order to get him into a more welcoming school setting.  I will admit to running away that year on the school break.  We packed up our vehicle, and took off for a month long road trip to Idaho, Washington State and British Columbia.  We stayed at a lake cottage, a winery, a yurt and a water buffalo farm.  It was really awesome to have no schedule and all that time together as a little family.  We took Aaron’s lead on activities, and splashed around at beaches and in pools, went to drive-in movies, and ate a lot of burritos.

When we returned, with the month remaining, we started a Summer List.  This helped me feel like we had a sense of purpose to the long summer days at home.  Aaron would help create the list, and each day we would pick one thing a day that we wanted to do.  

Over the past two summers, we’ve tinkered with the Summer List.  This year, Aaron is 11.  He is now very specific about what he wants to do.  Fort Edmonton?  NO.  Corn Maze?  NO.  Instead he replaces these with an infinite number of movies, mini-golfing, go-karting, meeting Dad downtown for a hot dog lunch, KFC picnic in the park, LRT train ride and Telus World of Science. Fair enough.  It is his Summer List, not mine.  (Mine would look something like:  Walk.  Bookstore.  Movies.  Pedicure.  Drink wine with friends. Date with husband. Repeat).  This is important:  we only pick one thing off the Summer List a day.  Sometimes we do nothing at all.  We have opted out of doing the busy thing.

We supplemented that with a week at a truly inclusive summer camp (thank you, University of Alberta), where the staff was trained to work with all types of kids.  His eldest sister hung out with him while I attended the occasional work meeting.  This, coupled with a month in British Columbia lying on a floatie on a lake, has filled up the Summer of 2014.

There are ten days left in summer.  Aaron is downstairs, slowly eating his Cheerios and nectarines and watching Spiderman on his iPad.  We are not missing the morning school rush, which is a complex process that includes pulling him out of bed in the morning, setting the timer, having a contest to see who gets dressed first, combined with bribes, threats and pleading to get him out the door in time.

I’ll have lots of time over our cold harsh winter to catch up on work while Aaron is at school.  Having two adult children reminds me that this time with Aaron is not forever.  One day, he, too will move out and leave our nest.   As the great George Harrison once said:  All there is ever, is the now. Each day is a precious gift.  Let’s govern ourselves accordingly.

lessons from gay pride

Andrew Ference with my friend & colleague Marni Panas.

Andrew Ference with my friend & colleague Marni Panas.

The Gay Pride Parade is the best parade:  with great music, dancing, sparkly costumes and general revelry.  The fun is guaranteed.

Over the past ten years, I’ve watched the number of people who attend the Gay Pride Parade go up and up.   A decade ago, only a pocket of friends and families would show up to demonstrate support for their loved ones.  This year, there were thousands of people at the parade.  The sidewalks were packed, and our city’s main square was bursting with party-goers.

Even our conservative politicians were represented, which would have been unheard in the past.  The captain of our NHL team was there, another first.

This was the place to be yesterday.  Gay Pride has blossomed from the fringes into the mainstream.  (There’s still a long way to go to secure equity and erase discrimination for the community, especially for people who are transgender).

I’ve thought to myself after going to the parade:  gosh, the disability community really needs something like this.  The Gay Pride Parade is a celebration of being gay, and an embracing of the gay, lesbian, transgender, queer and bi-sexual identity.  It is fun, unabashed and unapologetic.

Those of us who love someone with a disability could learn from this.  Andrew Solomon draws the parallels between the gay and disability communities.  Here’s what he says the gay community did, as translated to the disability community:

1.  Forge meaning in disability
2.  Build identity in your disability.
3.  Invite the world to share your joy.

There is great power in this philosophy.  Yesterday’s Gay Pride parade was about the people who are LGBT embracing their identity and inviting everybody to share their joy.

How often do people with disabilities do this?  I think back to the last time few times I saw a group of people with disabilities and their loved ones gathered together.  One was (sadly) at our Legislature, at a rally protesting cuts to disability services.  And the another time was just on Friday night, where kids who accessed the Stollery Children’s Hospital attended Dreamnight at the Zoo.  It was a relaxed, fun night, and Aaron ran into many of his friends from the Stollery and Down syndrome world.  It was like a great family reunion for him, and he hugged and high-fived his friends, and they ran off, unencumbered, exploring the zoo.

Events like Dreamnight at the Zoo serve to celebrate our kids with disabilities in a safe (and, yes, segregated) environment.   There’s a need for that, and I want to do more of that internal celebrating and not take it away.  One of the dads said to me:  “I’ve never felt so relaxed at the zoo. I don’t have to worry about people staring at us, or judging my son’s behaviour.”  I felt that way too.

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Aaron on Friday night with his friends.

Let’s keep bringing our families together to celebrate our kids – that’s a part of helping them embrace their disabilities and form their own identities.  I think the next step is to take the joy they have and share that with the world – unabashedly and unapologetically.  This isn’t black and white.  There is a place for families with children with disabilities to get together on their own.

But it also means taking the celebration of our children and our lives out of the closet.  We can do this by:  telling our stories in mainstream media, as Hamilton Cain did in Oprah Magazine;  sharing disability research with the world, like Liz Lewis does; and moving out of church basements and into our community recreation centres.

These are examples of taking the celebration of our loved ones onto the streets – figuratively now – but maybe one day we will host a big sparkly fun parade too.   Thank you to my friends in the gay world for showing us the way.

the tables are turned

olive et gourmand

from the glorious food shop olive et gourmando

The tables are turned, and I am the interviewee instead of the interviewer.

Aimee of the Montreal food blog Under the High Chair asks me the hard questions.  About food.  Glorious food.  Check it out here.

I met Aimee when I was in Montreal in July.  She generously took me on a private foodie tour of the city, which was a great amount of fun.  Lucky me…

library thing

Library Thing has been around for a while.  It is a listing of books people have read.  Basically, you put your personal library up on the Internet for all to see.

Here are my entries.  Click on the ‘cover’ option to see the full effect.  I don’t necessarily think you can see into someone’s soul by knowing what books they read, but it is interesting nonetheless.  Plus, by seeing the books that others read, it is a great way to get book recommendations and helps with the aimless wandering around bookstores. (Although I have to admit aimless wandering around bookstores is one of my favourite things to do).

I tend to go on jags with my book reading and lately I have been on a food memoir kick.  My favourite book so far?  Heat by Bill Buford.  The writing in it is sharp as a knife, and he seamlessly jumps between trips to Italy to a famous Mario Batali kitchen.  I savoured this book one chapter at a time, because I did not want it to end.  Please Bill Buford, write more books.