the truth about Down syndrome

For those researchers, clinicians, geneticists, ethicists and law professors who don’t believe what families have to say, yesterday the New York Times published a research-based article containing facts about The Truth about Down Syndrome.

I’ve lost count of the number of times I’ve told audiences at health conferences:

Aaron is a delight and a joy, and having him as part of our lives has changed our family for the better.  Our struggle comes from a society that fears differences and flawed health and education systems, NOT from Aaron himself.

For the professional audiences, who place heavy stock in research and data, I fear my (true, but anecdotal) stories about Aaron ring hollow.  I know I’m often written off as a cheerleading and hysterical mother.  

So thank you to authors and researchers Jamie Edgin and Fabian Fernandez for dispelling myths about Down syndrome.  Perhaps if you don’t believe me, you’ll believe them?  Research actually points to the Down syndrome advantage:  parents experience lower rates of divorce, siblings and kids with Ds report they are happier, medical challenges are now easily identified and fixed.

As for society and systems?  Perhaps if the professionals read this piece and take it to heart, they will stop using offensive language based on their own distorted personal values (newsflash:  my child is not abnormal), and stop Tweeting “Abort it and try again” to prospective families.  If you don’t believe us, believe the facts.  

Now I’m off to take my son and his friend (who both happen to have Down syndrome) to the science museum and then out of lunch afterwards, because our lives are so full of suffering and burden.  Not.

 

the invisible child

Last summer, I wrote about social exclusion from a mom’s point of view in a piece called The Invisible Mom.  It was originally published on the Bloom blog and then picked up by Huffington Post and Seleni Institute.  It still gets retweeted on occasion.  I know that the topic really hit a nerve.

Liz Lewis, an anthropologist, writer and sister of a woman with a disability, published In the Community, but Alone on the Bloom blog today.  I’m still in my pajamas and nursing a cold cup of coffee, but her essay made me outraged.  Not because I disagreed with her sentiment, in fact the opposite:  I was outraged at a society who continues to happily exclude people with disabilities in their world.  Our loved ones are ‘allowed’ to go to community schools, or live in the community, but are they actually embraced by the community as one of their own?  In Liz’s sister’s and my son’s experience, the answer is no, no, no.

What the Invisible Mom was about was about having an Invisible Child.  True, my son’s disability is also manifested in a physical way – you can look at him and know he is different.  So he gets stared at a lot (which I’ve learned to tune out over the years), but is he welcomed and included in the community?  No, he’s not.  My husband tells me that it is tribal:  that people fear people who are different.  But it is 2014!  We have committed to inclusive education so that he IS included – and that to me doesn’t just mean the school tolerates having him sit in the classroom.  Inclusion includes social inclusion, but here’s the stark reality:  while the teachers do their best to ensure he’s included in all activities, including recess and gym class, the sad fact is that the other children do not include him socially, in a meaningful way.  Number of birthday party or playdate invitations from school?  Zero.  As an assistant principal said to me:  we cannot force kids to be friends with your son.

I think we need to turn this issue upside down.  I’m tired of being told to be the super fun mom so kids want to come over to our place and be friends with Aaron. (Um, which hasn’t worked lately anyhow). I’m tired of hissing at Aaron to ‘behave’ and ‘not to be weird’ when we are in public, for fear of the stares and judgement.

How about we stop using the word ‘society’ and start saying you.  

How about you, parents of typical children, work hard to teach your children not to be afraid of all of those with differences?  How about when you talk about diversity, you include children with disabilities in your formula?   Why is it up to us to always beg and plead for you to remember our child when you are crafting birthday invitations?  Why is this my responsibility and not yours?  Do we all not want to teach our own children to contribute to a kind, welcoming and diverse world?

Change is never going to happen unless we start talking about these issues honestly.  Thank you, Liz Lewis, for introducing the important topic of social exclusion in a reasoned and rationale way.  I hope that it hits the mainstream, because that’s where these hard conversations need to happen….

EDITED TO ADD:
My husband constructively suggested that this post was mostly venting and contained no practical advice.  What’s the solution to the issue of social exclusion?  I’ve thought about that, too!

Here are some tips and hints about talking to kids in the classroom about a child with Down syndrome (or any other difference):  The Down Syndrome Talk.  And for families teaching their children about diversity and differences?  How to Become Part of Aaron’s Village.  It starts as simply as smiling and saying hello.

return to the land of the living

lifeisbeautiful copy When I was 33 years old, I took up smoking. This was really stupid. Who starts smoking at age 33 as the mother of two young children?

My marriage had just broken up. I was living in Norway, where everybody smokes furiously. Smoking filled up that deep dark hole that had been shot in the middle of my heart.

Here’s the thing about addiction: once it starts, it feels good. I loved smoking. It allowed me to escape my single mom life for a few minutes on that Bergen balcony, and it perversely felt physically good.

Thankfully, ten months later, I started dating a really healthy guy (my current husband) and I was terrified he’d find out that I was a secret smoker. I brushed my teeth constantly and took a lot of fragrant showers. The weekend we went away camping together, I forced myself to quit cold turkey, forever. I was a bitchy, agitated mess, and I’m shocked that we stayed together. He’s a good man.

I will now confess that I have the same addiction to my iPhone. Here’s how I calculate I spent my time on this Earth:
-60% of time looking at Facebook, Twitter or Instagram on my phone.
-20% of my time rummaging around for my phone – digging in my purse, feeling in my pockets, patting my butt.
-20% of my time frantically searching for my temporarily misplaced phone.

I fell into some very bad habits. My phone was plugged in beside me in bed just in case a wayward child texted me. I checked my Instagram feed just before I went to sleep. I scrolled through my social media feeds to wake up in the morning. I glanced at my screen at traffic lights. I stopped thumbing through magazines at the grocery store check out, and instead waited with my head down, reading Facebook posts.

There was a thrill in seeing a new notification on Facebook or Twitter. I became deeply sucked into the zing that went along with that validation. After my article Far from my Tree was published in the New York Times, my Twitter feed went wild. My heart beating loudly, I took a screen shot of the dozens of notifications, knowing that I’d soon be back down from my high to one or two paltry mentions or retweets a day.

I knew I had a problem, but felt helpless in the face of this technology addiction.

I listened to Carl Honore at a conference, where he shared about the danger of technology and our endless need to get more, more, more. I read meditation books to help centre myself and be in the moment. I could zone in the moment for only a moment, before I was glancing down at my phone, which had become my sweaty third hand.

“Put boundaries on technology” said the experts. I’d hide my phone and then seek it out after 30 minutes, compelled to scroll again. Moderation wasn’t working for me.

Now, I know myself well enough that I never installed my email onto my phone. Remember in the olden days, when you’d rush home eagerly to see if anybody left a message on your answering machine? Well, checking my email was like that. Since I didn’t have every single bit of incoming contact on my mobile device, I would run upstairs and check the email on my laptop when I got home to see if any ‘good’ emails came in. (Remember when all emails were good? Now most of my emails are bad: spam, problems, people wanting me to do things for them). Because of the inconvenience of my laptop, which lived on the third floor of my house, I soon was able to keep the lid closed for hours at a time.

On my phone, it was a different matter. I carried it around with me like my little baby. (Be honest. How many times have you texted while in the bathroom?). Facebook was becoming a serious problem. I censored my feed carefully, but still felt like a loser when I read everybody’s shined up Christmas letter version of their lives. Extravagant vacations, robust social lives, perfect children, statistics on their recent marathons – the reasons for my envy were many.

Twitter pissed me off less, but reading those 140 characters was so addictive, and even better than Facebook – because I followed over 300 people, there was constantly an update on it. I could check it, put down my phone, and then two minutes later, five tweets appeared. For an addict, this was awesome.

I have a small feed on Instagram, and a little more control. But my Facebook envy bled into Instagram. Sitting in my car in the middle of frozen winter looking at beach photos did not help with my morale one bit.

Then I read Hit the Reset Button in Your Brain by Daniel J. Levitin. He says you cannot daydream while you are checking your iPhone. They require different parts of your brain. When I was groping for my phone at 6 am, my brain was immediately clicking into organizing mode. Any creative function clicked off.

Well, I’m a writer. I have committed to not having a Busy Life so that my mind has time to knock around aimlessly and I can think of ideas and reflect upon concepts. I stopped overscheduling myself a year ago, and this has given me the luxury of daydreaming. Except when I’m checking my phone.

Last week, I deleted all my social media apps off my phone. I deactivated my Facebook account. All I can do is text or phone. Twitter and email wait for me on my laptop upstairs. Otherwise, when I’m driving, or standing in line, or waiting for my son to finish playing video games at the movie theatre, I am actually present. I’m looking around (this is especially helpful when I’m driving a motor vehicle). I watch the kids giggle as they play pinball.  I join Aaron in a car race game, and we speed through the streets of Paris in sports cars.  I eavesdrop on interesting conversations at restaurants.  I smile at the elderly lady in the grocery line. I chat with the cashier.

Discarding the distractions on my phone has lifted my head up. I am no longer obliged to have my phone glued to my hand. Sometimes (gasp), I even leave my phone at home. For me, this is revolutionary.  It has been a week.  Can this almost-cold turkey with technology last?  Check back with me in a month and send me a direct message on Facebook – hopefully I won’t respond.

For right now, I’m back in the moment, and I’m paying attention. I’m weaning myself off the addiction of the validation of the likes, comments and notifications. I’ve rejoined the land of the living.

the empty nest

my full nest

my full nest

I’m obsessing about The Empty Nest.  This will be boring to those not looking straight into the barrel of this life transition.  Even though I now have two adult children, ages 18 and 21, the idea of mourning for my leaving children coupled with an identity crisis seemed distant to me up until exactly two weeks ago.

Then BOOM.

On Monday, my eldest son informed me he was moving to LA in two days.

On Tuesday, my daughter told me she’s moving out with her boyfriend on September 1.

Since this is too fresh to analyze (well, I attempted a post, but it was mostly about birds), I will lean on others to offer wisdom for me.  Oddly, my own children’s transitions have coincided with the American phenomenon of sending away children to college in the fall.  So there’s a wealth of essays for me to draw upon.

Here is a perfectly constructed quote from Randye Hoder in the New York Times Motherlode that sums up the whole damn thing really well:

She is well on the road to adulthood, & from this, she will never return – Randye Hoder, Struggling to Let Go of My College-Student Daughter

The aptly-named Grown and Flown blog by Mary Dell and Lisa Endlich is now my bookmarked encyclopedia on this subject.  I’ve harvested my favourite Empty Nest quotes from their post called 8 Best of the Empty Nest:

  1. No surprise, Anna Quindlen wrote a beautiful piece ten years ago that is still relevant today.  She says:  No, not the writing job–the motherhood job. I was good at it, if I do say so myself, and because I was, I’ve now been demoted to part-time work. Soon I will attain emerita status. This stinks.
  2. Parenthood offers many lessons in patience and sacrifice. But ultimately, it is a lesson in humility. The very best thing about your life is a short stage in someone else’s story. And it is enough.  -Michael Gerson in Saying Goodbye to My Child the Youngster.
  3. Madeline Levine says in After the Children Have Gone: It is a pleasure to remember that it is not a form of abandonment but an expression of a job well done — and is something to keep in mind as we move back into the center of our own lives, in ways that will make our children proud. 

I will continue my fixation on information gathering, but I believe I will not be able to reflect upon this phenomenon until I am safely on the other side.  One revelation I have had is:  This is not about me.  This is about my kids.  I put on my brave face as I help my daughter pack up moving boxes, and retreat into the bathroom to shed private tears.   I’ve been so proud of NOT being a helicopter parent, but now I’m a puddle on the floor.  I seriously have got to get my shit together.

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.

your mom resume

I am catching up on my stack of newspapers that piled up while we were on holidays.  There was a super essay published last month in the New York Times by Lisen Stromberg called The Not-So-New-Mother: Finding Balance.

I so appreciate any writing about women’s work that isn’t black and white.  The black being:  Go back to work!  Don’t lose your career! And the white being:  Stay at home with your kids!  Look after your house!

Life instead presents us with infinite shades of murky grey.

Lisen Stromberg shares her experience struggling with the paid work question when she had children.

But I was paralyzed, unable to find clarity on what was right for me.

This is the way it is for most of us.  We struggle with our decisions, no matter what they are, but hopefully find peace with them.  Or if we don’t, we creatively adjust our working arrangements.

When I meet a mom, I am careful to ask, not ‘do you work?’ but ‘do you work outside the home?’ I firmly believe that if you are at home, you still work.  It is just not paid. So I’ve always used the terminology: paid work and unpaid work.  This is to value all types of work, whether it is paid or not. Paid work is self-explanatory, but can include regular full-time, part-time, casual, or irregular contract work.  Unpaid work includes caregiving of all types (children and other loved ones), volunteer work, and work tending to the home.

Let us consider our own journeys navigating work after we have had children.  The results may be interesting, and not as linear as we might think.  Yes, there are some women who go back to their full-time position after maternity leave, and others who purely are at home full-time with their children.  But there’s a lot in between.  

Here’s what my Mom Resume looks like:

1993 – Kid #1 is born.  Take 6 months’ maternity, but then quit to stay at home full-time.

1995 – Old boss calls me up and says, “are you ready to go back to work?”  Husband and I switch – he stays home, I go back to work full-time for a year and a half.

1996 – I get pregnant with kid #2.  Husband’s search for work necessitates a move two provinces away.  We move there for his job, and I stay at home for the next 4.5 years.  Unpaid work includes:  being involved with a national group called ‘Feminist Mothers at Home’, building a new community of support in a city where we know nobody, volunteering at school, and becoming a volunteer La Leche Leader.

2000 – Marriage #1 breaks up.  I have no paid job.  I slowly start freelance writing, but $25 per book review for our local paper is not paying my bills.  I take in children for before and after school care in my home to cover my mortgage.

2001 – I move to Norway with my children to live with a family and their three children.  I look after all five kids during the day, and then have the evenings free to write.

2002 – I move back to Canada with my kids, but arrive in the city where their dad has moved where I again have no paid job and no place to live.

2002 – Despite being out of the paid workforce for 6 years, I have kept in touch with paid work contacts, and have volunteer work in my arsenal.  The Job Gods shine down on me, and I secure a full time, well paying government contract.  My kids are now in kindergarten and grade 3.  They go to pre and after-school daycare in their school.

2003 – Marriage #2.  I am pregnant with Kid #3, take an early maternity leave, but still plan to return to my full-time job.  During that time, I decide to pursue more freelance writing, mostly in the world of food.  I also start up a food blog. I get regular writing gigs with a food magazine.

Kid #3 is born, and surprise, he has Down syndrome!  The time after his diagnosis is a blur of grief, looking after a newborn who won’t eat, attending tons of medical and therapy appointments, tending to his four young siblings, generally freaking out and having to make a decision about my job.  I decide not to return full-time to the paid position.

2003 – 2012 – Over the next 11 years, I start up a mom’s group for moms who have babies with Down syndrome.  I co-found and coordinate a formal peer support program with our local support society for 9 years.  I present to health professionals about the value of peer support.  I start becoming involved with the patient and family centred care movement – first as a volunteer on a Family Advisory Committee and then in a paid, part-time/contract/work at home position as a Family Centred Care Consultant.  I volunteer a lot when Kid #3 starts school.  I am on the Board of our support society.  I go to Down syndrome conferences, and present at international conferences about peer support.  I continue to write for food magazines, and then move into health writing.  I get a paid gig writing proactive health stories for our health authority.  I have other writing clients on the side.  I start writing and presenting more about patient centred care, and even travel to Australia for a speaking gig.

All this is a jumble of paid and unpaid work.  I never make a full time wage, and have the good fortune to have a financially and emotionally supportive husband.   We engage all sorts of pieced together, part-time childcare for Kid #3 – university students, older siblings, moms from his school, & a part-time twice weekly nanny.  Somehow it all works.

2012-present – My freelance writing business blossoms into a network of 13 communication folks.  I go to school to get a post-grad Professional Communication Management certificate.  I’ve never had an office all these years – working instead in my kitchen, in coffee shops, and now in an office in my home. Kid #1 has long graduated high school. Kid #2 has just graduated, and is working in her gap year.  Kid #3 is now 11, and heading into Grade 6.  We take the majority of the summer off to be with him and fill in with summer camps and babysitters in between.  Every year I have summer work/childcare anxiety, and every year it has somehow works out.

2014 – My nest is emptying out and my identity is currently a work in progress.

Writing this Mom Resume has been an interesting exercise.  If you had asked me before about working and being a mom, I would have said, well, I’ve mostly been at home with my kids, and I did some freelancing on the side.  But you can see that my journey has been more complex and twisty than that.  I bet yours has too.

Lisen’s first child is the same age as my second child – they both have graduated from high school.  As she reflects with her ‘not-so-new-mother’ friends who have children of the same age, she realizes that there they have all taken unique paths in their previous 18 years of motherhood.

You can be a mother and still rise to the top of your industry, and you can take time out to focus on family and still migrate back into rewarding, paid work.

I challenge you to sit down and write out your Mom Resume since you had children.  I bet you will be both impressed and surprised at your inventory of work.  And no matter what work you’ve done paid/unpaid, you have also raised the next generation of human beings – and that’s a pretty significant job, don’t you think?