The Invisible Mom is now more visible

There are so many things that I love about being a writer. Some are practical, like setting my own schedule and having the flexibility to work from home. Others include funny little perks, like dragging my introvert self out to social events, thinking: well, if this bombs, at least I’ll have something to write about. There is great satisfaction in having ideas stuck in my head, and then sitting down and pounding away at the keyboard and seeing them come alive on the screen. As Anne Lamott says in Bird by Bird, most of writing is getting your butt in the chair. I write for all sorts of reasons.

I also won’t deny that my ego gets a thrill seeing my name in a byline (especially this one. How do I top that?).

When I write about life with Aaron, my 11 year old son with Down syndrome, I hope to inspire, motivate and educate. And spark discussion. I never want to be known as the ‘special needs mom’ because even though I am Aaron’s mom, he’s so much more than ‘special needs’. I’m mom to two other kids, who have taught me a lot about myself, too.

Alas, there is so much fear and ignorance in the world about disability that I do use my name to spread the word of love and compassion. As Stephanie Mitelman said at a workshop I was at on Saturday, we need to evolve beyond merely tolerating people with differences to accepting them, and then celebrating their awesomeness. I will toot that horn whenever I can.

I wrote The Invisible Mom to address the issue of exclusion. We aren’t even at the stage of tolerance of people with differences in some settings, never mind acceptance and celebration. Plus, I wrote it when I was MAD. I’m not sure I would recommend writing when you are mad, but this topic was really stuck in my head, and I couldn’t stop thinking about it. (I’ve written when I was mad before, here). Good or bad, I write about topics that evoke emotion in me, and that emotion isn’t always joy.

The Invisible Mom was first published last June in Bloom. Then it got republished by Huffington Post. The Invisible Mom suddenly had legs. The Internet is a funny place. Things get picked up and are popular for a short period of time. Then everybody gets interested in something else, and the attention dies off.

But things on the Internet never go away, and The Invisible Mom has been resurrected 17 months later. I’m pleased that two other writers have written responses to it. One is Feeling Included by Julie Drury, and the other is written by Beth Dangerfield and called, What if I don’t want in?

Having a response written to a piece is high praise. I know that these essays were written because these women had something else to say about social exclusion. They don’t necessarily feel the same way as I do, and that’s totally ok, because final reason that I am a writer is to help jumpstart thinking and open a dialogue about topics that are important to me.

And now, voila, The Invisible Mom is now more visible. And frankly, that’s all I really wanted.  Let’s keep on telling our stories to the world, everyone, and kudos to Julie and Beth for their writing.  That’s the only way change is going to happen in this damn, imperfect, beautiful world.

I Am “that” Parent

sue robins:

Thank you to Karen Copeland for her kind permission for me to reblog her most moving & poignant post from her blog http://www.championsforcommunitywellness.wordpress.com. How I wish that all educators/parents would read this and take the time to understand our stories and find compassion in their heart. -signed, Mom who cries in school meetings.

Originally posted on Champions for Community Mental Wellness:

This post is inspired by a recent post that has gone viral titled “Dear Parent: About THAT Kid” by an educator in Calgary, Alberta. It is a powerful post and I encourage you to read it. While I was reading the post, I thought about how easy it is to assume instead of be curious. I thought about the label “THAT” and how we become fearful of this – we don’t want to be known as “THAT” parent so we stay quiet.  I think it is time to be more curious about “THAT”. This post is dedicated to all the parents out there who are “THAT” parent.

Author: Karen Copeland

I am that parent.

Dear professionals: You know me, I am the one who asks questions. The one who seems like she is always asking for information. The one who makes suggestions on the IEP, or seems to…

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care of ourselves

IMG_5664

At the Erin Rose pub, off Bourbon, in New Orleans. (Note: go for the killer po’boys in the back room).

I have a colleague, Joanne Minaker, who is a visionary when it comes to women’s issues.  Her philosophy is that we have to take care of ourselves before we can take care of others.  And I know y’all are nodding and saying, yes, yes, we know that.  But 21 years into motherhood, I can unequivocally say that this is absolutely true.  And while we might nod, how many of us actually take action on self-care?  We’ve got loads of excuses:  no time, no money, too many other people to look after.  But don’t forget:  a happy mom is a happy family.

Joanne hosted a Be Bold with Care Retreat two weeks ago.  One our Bird Associates Tara Hogue Harris, attended and wrote about her experience on our company blog here.

I could not go because I went to Los Angeles and New Orleans instead.  I went to LA to see my long lost eldest son, who is living the life in Koreatown with his lovely girlfriend, while drumming and touring across America.  It did his mama’s heart good to see him.  I was happy to see the whites of his eyes, go for Korean hot pot for dinner, walk around central LA with him, and then drag my pink suitcase up to a Mexican burrito place to meet up the next morning.  I saw where he lived, I saw he was in love, I saw he is happy.  All is well.

Then I boarded another plane and met my husband in the airport in New Orleans for what I (half) jokingly called Our Marriage Saver.  Every two years, we make very complex child care arrangements to go on adult trip together. (Yes, I realized how privileged we are to do this.  It costs a lot of money).  Since Aaron has been born, we’ve been to San Francisco (twice), Italy, New York and now New Orleans.  These have all been very adult vacations.  We eat hard, dance hard and go to bed really late and sleep in even later.  We eat food that isn’t kid friendly, go on big hikes, take leisurely shopping expeditions (Sue), go to pubs (Mike) and sail through airports, unencumbered by children.

It is frankly awesome.  Our cups get empty when we are neck deep into parenting.  The geographical cure does work to refill it, even if that cure takes you as far as your local bookstore or bathtub.

After six days away, I have the luxury of having an overfilled cup to draw upon.  My husband and I giggled together, and walked wide-eyed down Bourbon Street, drinks in hand and beads around our necks.  We jumped up and down to 80’s music, hung out in local pubs, ate po’boys, gator gumbo, jambalaya, muffaletas, shrimp and grits and pralines and drank a substantial amount of Hurricanes (me) and Old Fashioneds (him).  We went on a food tour, a bus tour and a swamp tour.

I’m still detoxing – drinking a lot of water and eating vegetables while I recover.  Want to go on an adult trip and not into Vegas gambling?  New Orleans is where it is at.  As Joanne says, caring for ourselves isn’t just about going for a pedicure (although that can help), and care is really about human sustenance.

When I got back home, I was hit by a tornado of problems:  crappy work emails in my inbox, scheduling medical appointments for Aaron, trying to find him private behavioural supports, being told the school speech pathologist won’t see him, and bearing witness to injustices in our educational system.  This is frankly exhausting. Plus, it had snowed when we were gone.  Winter has begun in earnest.  And it’s going to be a long one.

So go ahead.  I invite you to take a break from the grocery shopping, the laundry, the advocacy, the outrage, the therapies for your kids, the school phone calls, the early mornings.  Treat yourself, even if it is for one afternoon.  Disappear to a movie.  Go for that pedicure.  Browse in the bookstore.  Have a long hot bath.  You deserve it, my friends.  And I believe that you are well worth it.

Ps:  thanks to Corrie, Ella, Eisech and Helga who held down the fort back at home to make this happen for us.   And to my parents, who generously provided childcare for our previous trips. xo

 

 

getting to maybe

Originally posted on sue robins:

wellbehaved

Every so often, I get a fire in my belly that I cannot extinguish.  My guide to to the Revolution is the book Getting to Maybe.

This book is for anyone who has ever thought:  THIS IS NOT OK.  I NEED TO DO SOMETHING.

I re-read my dog-eared version of this book when I lobbied (along with four other families) our local children’s hospital to create a Family Council.  (It worked.  Over four years later, it is going strong).  I referred to Getting to Maybe when the Nurse Coordinator at our Down syndrome clinic was slated to be laid off, and, along with a group of awesome, equally outraged families, we created an advocacy campaign called All Kids Deserve Health Services.  (It worked.  The government reinstated her position).

I’m currently outraged that families who have children with Down syndrome can’t access public speech and language…

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remembering henry

447px-Poppies_in_the_Sunset_on_Lake_GenevaLong ago, when I was twenty and still in university, I worked in a Veteran’s Home as a Nursing Attendant. I’d often work mornings helping the staff get the men up and ready for the day – and then run across campus to my English class, dressed in my nursing uniform and white nylons.

I’m remembering that experience today. Nursing Attendants are true bedside workers. We were the ones who worked directly with the gentlemen on the nursing unit – many of whom required extensive care. We cleaned up things that the housekeeping staff wouldn’t touch. But we also had the luxury of time to spend with the veterans, as we helped them get dressed, or patiently helped feed them meals.

Nobody talked about the War. At the time, there was even a World War I veteran at the Vet’s Home – but there were many veterans from World War II and Korea. While the war was in the distant past, it lived with these men every day.  These were just ordinary men who had found themselves in terrible circumstances. The scars from those war-time experiences often were manifested in estranged families, whispers of abusive behaviour and alcoholism. I remember helping men to bed after their return from the Legion, reeking of whiskey, and slurring their words.

But that wasn’t the whole story. The wars had affected a cross-section of the population of men, and there were many dignified, lovely residents at the Veteran’s Home. They enjoyed the company of the young nurses who where there to support them, and many of them reminded me of my own grandpa. It was important for the staff to remember that these ‘residents’ were also fathers, granddads, brothers and sons.

There were many stories of kindness at the Vet’s Home. My clearest memory was one winter, when I was working nights. On night shift, there was a lot of sitting around at the nursing desk, waiting to respond to call bells. Every few hours we would have rounds, where we would quietly walk through the unit, checking on the men, emptying urinals, and turning those who were immobile so they wouldn’t get bedsores.

One night, my patient assignment included an elderly man named Henry. He was in the last stages of life, and his breathing was increasingly noisy and laboured.  He had no family or friends to visit him in his final hours. After our first set of rounds, I excused myself from the desk to sit beside his bed.  Henry had yelled and sworn at me in the past, but all that didn’t matter now. His hand had paper-thin skin, and I held it softly through the wee hours of the night. It was a long shift. When I left at 7 am, I said a quiet good-bye and gave him a gentle kiss on his forehead.  I did not look back when I left the room.

I read Henry’s obituary in the paper a few days later.

I learned many things from working at that Vet’s Home. One was to duck fast if something was being thrown at you.   My other realization was that health care is really about acts of kindness.   And that no man should ever die alone.

Lest we forget.

(Originally published on the Bird Communications blog on November 11, 2013).

shake it off, shake it off

As a 46 year old mother of three, I’m hardly in Taylor Swift’s demographic.

However, as a sensitive fragile flower, an introvert, and a mom and advocate who often is really mad at the world, it feels like her Shake It Off song speaks directly to me.  I will confess to purchasing her new album 1989 (hey, that’s the year I got married to my first husband!) at Starbucks today.

If the haters gonna hate, hate, hate, (no matter what I do), then resiliency means shaking it off, shake it off.  I need that song in my head sayin’ it’s gonna be alright.

(Taylor Swift, your video with the shaking tutus is pretty funny too.  Thanks, from a tired old mom who looks for inspiration everywhere).

 

see you know you like you trust you

1_times_square_night_2013Aaron is in grade six in a massive school.  There’s currently just under 900 students, and the school lobby at pick up time is like Times Square on a Saturday night – total and complete chaos.

In a school of that size, there are of course other kids who have funding for support.  But Aaron is one of the only kids with a visible difference, so meeting the other parents of kids with Educational Assistants is impossible.  I mean, you don’t just go up to a parent and say, ‘hey, does your kid have autism or something?’

I believe in the power of peer support.  I think there is great benefit to connect families together.  We can support each other, share information and teach each other how to be effective advocates.  Peer support also has a significant mental health benefit, as we know we aren’t alone.  I’ve been successful starting up peer support initiatives in the health and disability worlds, but I struggle with finding my peeps in the school environment.

Last year I was very fortunate when an Assistant Principal started to informally introduce me to other parents in the hall, and supported the creation of an Inclusion Group that meets regularly both formally at the school, and informally for coffee at our recreation centre.

We purposely kept the group open to all families who are interested in creating a culture of acceptance and compassion at our school.  We want our Inclusive Group to be inclusive.  So this doesn’t just include families with kids with so-called ‘special needs’ but people who have typically developing kids, and who want their kids to be in a school environment that welcomes and embraces all sorts of diversity.    I think these parents who show up to our meetings are pretty special.

On Friday when we met for coffee, we talked about how to become more active in the greater school community.  The last thing we want is to be a segregated ‘special interest’ group.  We want our kids to belong to the greater student community, so we have to step up and be more visible.  Being an introvert and mom of much older children, I’ve never felt like I’ve fit into the gaggle of moms at the elementary school.  I’m always the awkward, bookish girl, and don’t even have the tools to know where to begin.

Amy, one of the moms, had great wisdom about the steps required for both us adults and our kids to gain acceptance, and have influence in the school.  I love the simplicity of this:

People have to:
First see you.
Then get to know you.
Then hopefully they like you.
Then they learn to trust you.  

This is so brilliant.  Showing up is the first step, and we are committed to showing up at Parent Council and for other volunteer opportunities at the school.   Acceptance takes a lot of time, hard work and perseverance.  I’m not going to lie – this is not easy stuff.  But we are committed to not giving up, even when the going gets hard.  Because when you have each other, you’ve got each other to hang onto even when the road is bumpy along the way.