to feel alive

Aaron Waddingham

Photo by Ryan Walter Wagner at Goodside Photo

This is my fourth day on Granville Island in Vancouver killing time and staying close as Aaron attends a Teen Improv camp at the Improv Comedy Institute.  I’m tucked away in a courtyard nursing a coffee and watching the gaggles of tourists stroll by.

Aaron’s high school drama teacher suggested that improv skills would help his burgeoning acting career.  So here we are for two weeks on Granville Island.  I do the driving and Aaron does the work.

Earlier this year he had an audition for a part in a TV series for a character with Down syndrome (spoiler alert, he didn’t get the part).  I asked him how he felt after his audition with the casting director.

“I feel alive!” he said, his eyes big, his arms outstretched.  His dad and I know that it is our job to support our children so they can do the thing that makes them feel alive.  For my oldest son it is music.  For my daughter it is nursing.  For Aaron it is acting.

Through a series of circumstances and a touch of serendipity, Aaron has been signed by a talent agent.  Roles for disabled actors are scarce, but we have been assured that opportunities are growing.  Aaron now has to put in the work to hone his skills just like every other actor.  He already works one-on-one with an acting coach, is in high school drama classes and a local acting school has welcomed him with open arms into classes this fall.  This summer, he tackles improv.

On the TheatreSports website it says: The Vancouver TheatreSports League and the Improv Comedy Institute are actively looking to encourage diversity within the improv community. As improvisers, we tell stories and we want our stories to reflect the experiences of our greater community.  They’ve backed this assertion up with action.  Aaron has been welcomed into the teen program like the other kids, together with kindness and accommodation from the Outreach Coordinator.

I promised to hang around the theatre in close range just in case they need me.  Now I’m not sure what I’m needed for.  After the first class, the instructor emerged with a big smile and reported a good day.  Yesterday I glimpsed Aaron standing in front of the class, giving suggestions for topics for skits (chickens, I overheard him say).  He’s holding his own.

This morning there was a new development – he crossed the street by himself before he disappeared out of sight into the building.  (This is a big deal in our world).  His mother is slowly releasing her apron strings.  He lopes out after class with his headphones on and a grin on his face.  “I am independent, Mom,” he informs me.

To me, the creative community seems to demonstrate an authentic commitment to diversity and inclusion.  They have been more accepting of my son than the academic or sports worlds ever have.  Perhaps creative types grew up knowing what it felt like to be different, to be on the edges, to struggle with belonging.  I felt the sting of exclusion, never fitting in, being called an ‘artsy-fartsy’ in the yuppie and jock decade of the ’80’s.

It wasn’t until I transferred from Nursing into English in university and immersed myself in Shakespeare and art history classes that I finally found my people.  I was the quiet bookish girl with oversize glasses and frizzy hair.  It was other people in the arts who accepted me just as I was – all awkward, introverted and breathlessly passionate about words.  (I’m still that way).

And so this is my dream for Aaron too: that he’s accepted just the way he is.  He’s a funny guy, he loves to perform and yes he has Down syndrome.  Ask him and he will firmly tell you:  I am an actor.  I wish I had a fraction of his confidence.

He feels alive when he is performing.  At our core, isn’t that what we all want – to feel alive?

I’m grateful to Rachelle Goulter at Vancouver TheatreSports, his agent Lena Lees-Heidt, his acting coach Lane Edwards and LyreBird Academy of Dramatic Arts for all giving our boy a fighting chance.  I hope the next time I write about Aaron the actor he has landed a part.  But in the meantime, we are sitting back and enjoying the ride.

How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

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Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…

The Down Syndrome Rocks Talk, part 2

I thought the best way to share my son’s talk to a high school class about having Down syndrome was to simply share his presentation.  This talk was designed and written by Aaron himself.  The only adaptation we did was to provide copies of the speaking notes to the students, in case they had challenges understanding his speech.

I asked Aaron if he was okay with me posting his slides and his speech on my blog. He said yes.  (People with intellectual disabilities are capable of giving consent.  The problem is that we rarely ask their permission, or we don’t ask it in a way that is understood).

Enough with the mom commentary!  Here it is, standing strongly on its own.

Slide1

 

Hello, I am the only cool kid in at this school who has Down syndrome.  This is what I want you to know about Down syndrome.

Slide2

There are many kinds of disabilities in the world. Down syndrome is but one of them. I was born in 2003. When my mom and dad made me, I had Down syndrome.

I have three copies of the 21st chromosome. I have 47 chromosomes all together. You guys have 46! I have more chromosomes than you!

Slide3

 

How am I different?
My face looks different
I have low muscle tone
I need some help at school to learn

 

Slide4

I am the same as you too. How I rock: I like dabbing/flossing, Fortnite, Nerf guns, luxury cars and sports.

I also am an actor. I am not in Hollywood yet but I am signed with a talent agent. My social media is: YouTube
Instagram: @aaron.waddingham

Slide5

What I want you to know is that respect is the key. Respect means I want to be treated the same as you. I just need a bit of extra help.

Slide6

 

 

I am a human being like you.

 

Aaron delivered the presentation in a lively way, throwing in some jokes, demonstrating how he could bend his thumb back because of his low muscle tone and dabbing and flossing too.  Amusingly, when he said I have more chromosomes than you, he added BOOM!  IN YOUR FACE!

The students were very quiet.  The only time I spoke up during his talk was to say:  Aaron is a funny guy!  It is okay to laugh.  The permission to laugh with Aaron (instead of at him) seemed to help them relax.

I facilitated a question + answer session and there were thoughtful questions about stigma, independence, health concerns and the differences in education systems between provinces.  I felt a bit desperate to show them that we have a rich and full life (because we do), so I ended up rambling too much.  There are always lessons for me after every talk.

At the end, I made a request.  I said if they saw kids from the Access Program (the school district’s ‘special ed’ program) in the hall, not to be afraid to go up and say hi or give a fist bump or high five.  At least acknowledging people’s presence is a start on the long road to belonging.

I felt extremely proud of Aaron’s moxie.  He stood up and spoke for himself.  I was reminded how much he has to overcome to be a part of this world.  I admire him so much.  His ending comment:  I am a human being just like you – offers up with great clarity, everything you need to know about Down syndrome.

Did the talk make a difference?  I am not sure we will ever know for sure.  But if one person in that class is even just a little less afraid of a disabled person, then Aaron’s job was well done.

He is Down syndrome

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Photo by Goodside Photography goodsidephoto.com

The other day I was talking to Aaron and in the midst of our conversation I mentioned, “you have Down syndrome.” He looked at me, puzzled, and replied, “No, I am Down syndrome.”

I thought he had mixed up his verbs and corrected him,  “No, you have Down syndrome.”

He repeated firmly, more annoyed with me this time, “No Mom, I am Down syndrome.” He wasn’t mixing anything up. I was the one mixed up.

Who am I to say who he is or is not? He has the extra chromosome, not me.  I paused to wonder how often parents use language that makes us feel more comfortable and distances ourselves from disability. I know that I’ve been doing that for 16 years. I even used to lecture to health professionals about person-first language. Aaron was blowing person-first out of the water.

Speaking of which, I’m now asking Aaron’s consent to write about him.  (Contrary to popular belief, people with intellectual disabilities can understand consent). He said, ‘sure’ when I asked him about sharing this story.  Plus, he chose the photo that he wanted to accompany this post.

I’m finally waking up to the fact that it is Aaron’s Down syndrome, not mine. And so goes the hard work of parenting: allowing our children – all our children – to differentiate from us. He is not a mini-version of me, disability or not. It is high time that l take Aaron’s lead and govern myself accordingly.

Everybody Grows Up

aaron gig

My son is almost 16. The education, health and human services sectors tell me that this is a transition time for him. Talk of transition is everywhere.  There are transition pamphlets and websites and apps and roadmaps thrown at me at every turn.

I hereby declare that I reject the term transition and say instead that Aaron is growing up. System-speak is everywhere: calling friends ‘peer support,’ brothers and sisters ‘siblings,’ and going home ‘discharge.’ I am officially dismissing system-speak. Falling into the habit of talking about our kids this way means we’ve given the power back over to the system. Language matters. I’m not going to let them turn my kid into a one-dimensional cliché of what they think a disabled kid is.

My other two kids grew up and Aaron is growing up too. Having Down syndrome doesn’t stop him from becoming an adult.

I’ve been thinking about why families put off planning for our disabled kids’ future. We have to apply for tax credits, try to work a lot to save money (somehow, while at the same time we have to provide caregiving), secure psycho-ed tests, apply to get an adult file open, meet with social workers, find physicians who will see our kids, forecast for life – our adult child’s and our own – after school ends, which includes limited and rather bleak options for post-secondary school, housing and employment.

This all sucks at a time when we should be surviving our kid’s puberty (which all parents have to do with all kids) and celebrating that our child is growing up. We should usher in their adulthood with joy not despair.

I am reminded of the time when Aaron was first diagnosed 16 long years ago. The joy of a baby’s birth is also taken away from families by the way a disability diagnosis is disclosed. There’s a lot of talk then about ‘burden and suffering’ from health professionals.  I say the joy of having a baby gets carted right out of the delivery room.

I’m not going to allow the joy to be taken this time around as my son reaches adulthood. The system tries its best to push me into misery with all their anguished forms, intake processes and assessments.

Growing up should be celebrated, not dreaded. It should be a time of hope and opportunity. Aaron is almost a man now, becoming more and more himself, his character brightly shining through. He wants to be an actor, so we are going to support him with that as far as he goes. I feel lucky to be his mom, to witness his transformation into adulthood.

The other day when we were driving in the car, Aaron turned to me and said: ‘Mom, I am an organic human being.’ Yes you are my son. Let’s celebrate that first. Let’s put you as an organic human being front and centre.

Of course I’ll do what I have to do to get on wait lists, secure funding and fill out forms. But this time I’m going to endeavour to not let the system crap wear me down. I don’t believe in their deficit-based approach. The system is not stealing joy like it did when he was born. I’m simply not going to to allow that this time around.   No way.  No more.  Not today.  I’m going to hang onto gratitude for my son with the extra chromosome as tightly as I can.

He doesn’t just have his mother’s heart-shaped face

globe article.jpg

This essay was originally published in the Globe + Mail on October 6, 2005.

I gave birth to my baby boy, and he was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.

His birth was everything I wanted. No interventions, no medications, a baby who slipped out naturally after a few pushes to meet his parents. Even in the late stages of labour, Mike and I were giddy with excitement in between each contraction. “The baby is coming,” Mike kept saying, and I would grin and nod and kiss my love before another wave of contractions pulled me back under.

We took him home after 10 hours, and he was all wee and jaundice-yellow. He was a quiet, soft, sleepy baby with a sweet mop of hair on top of his head. His round face was mine, and his eyebrows were blond. He was our little peanut, our button. His dad and I fell deeply in love with him.

Then the dark clouds started to settle in. At the end of his two-week checkup at the clinic, the doctor hesitated. I could tell he wanted to say something.

“Do you remember we talked about prenatal testing?”

Yes, I had. I had declined the testing. I knew I’d carry my baby to term no matter what.

I looked him straight in the eye, and took a deep breath. “Are you trying to tell me that our baby has Down syndrome?”

Retrospect is such an easy thing. I had not forgotten the day after Aaron’s birth, when I had gotten up after a long night of scrutinizing my boy and typed “Down syndrome” in the Google search engine. I had broached the subject with Mike, and he had scoffed at me for being paranoid. Then I had asked the public health nurse later that day if she thought Aaron had Down syndrome.

“Yes,” she had said gently, but then she had inspected the palms of his hands and his toes and concluded that he had a heart-shaped face like his mom, and eyes like his dad — that’s all. No other signs. So we filed away this scare in the back room of our heads and carried on. Whew. That was a relief.

But when the doctor mentioned the prenatal testing, I knew. I could hear my heart beating in my ears. I was holding onto my baby for dear life. “Oh,” I said. “Can I use my cell phone here?” I had to phone Mike, immediately.

I don’t recall our conversation. I am sure I sounded as if I was being strangled — and, in a way, I was. I do know that I sat in that examining room, nursing Aaron until Mike arrived. I don’t cry easily and there was a choked bundled of tears sitting just beyond my throat. I remembered to breathe.

Mike wanted to carry Aaron over to the lab in the hospital. He wouldn’t put him in his stroller, and he marched proudly through the hospital corridors cradling his son. It was as if he was saying, “I’m looking after my boy, no matter what!” They drew blood from Aaron’s little arm. Mike and I didn’t talk much — I felt sick as the needle went in and Aaron gave a cry of protest. We had to wait two long weeks for the result.

We were back at home. Aaron was napping in his car seat. The day was beautiful . . . mid-April, sun streaming out of the prairie sky. We sat on the balcony of our house, watching Aaron sleep, discussed how our doctor was wrong, how he was too inexperienced, how he had surely misdiagnosed.

There was a waft of music coming from the house across the alley. I strained to make out what song it was — it was coming from an open bedroom window. A young man lived there with his parents. He had a rare chromosome deficiency and is one of the few people with such a condition to be alive. He wasn’t expected to live beyond a year old, but there he was, 20 years old, blasting music out of his window.

The song finally became clear. It was a song from my memory of junior high school dances. Our neighbour was playing ABBA’s Take a Chance on Me.

The results came back after the two weeks. And yes, our baby has Down syndrome. The deep chasm of grief seemed endless when we found out that the baby we expected was not the baby we received.

But slowly the sun peeked out from behind those clouds, and I was able to get out of bed and go about my business. My baby, now two years old, did not allow me to stay stuck in the grief.

Instead he holds out his chubby little hand as we trundle down the sidewalk, both delighting in this warm fall day. My ABBA-playing neighbour is outside as we pass his house, and his face lights up as I greet him by name. Take a chance on us, indeed.

miguelito’s little green car

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My son Aaron was involved in a fun project with talented Edmonton-based photographer Leroy Schulz.  It is called Miguelito’s Little Green Car.  Aaron joins the ranks of celebrities like Kate Middleton and Gordon Ramsay who have had their photos taken by Leroy with this little green car.  (Aaron was especially thrilled to have his picture join Snoop Dogg’s).

Leroy explains the intention of the project:

This project is meant to remind us that we are all connected. Thousands of people from around the world from all walks of life are interconnected through the green car.

The photo itself is fabulous  It was taken on our terrace last week just before the big snow on the west coast.  I especially love Aaron’s interview and how he describes himself.  He speaks with brevity and communicates what parts of his identity are most important to him – you will note that his YouTube channel ranks up there.  He spends hours of his time working on Dangerously Waddingham.

I am in Grade 10 and almost 16 years old. I was born in Edmonton but now I live on a mountain in Burnaby, British Columbia. I have Down syndrome. This means I have an extra chromosome in my DNA.

I want to be a YouTube star!

Indeed, we are all connected, no matter (or does it matter?) how many chromosomes we have.  Being human is simply enough reason to be connected. Do not fear the differing chromosomes.

While I adore initiatives like Rick Guidotti’s Positive Exposure program, I’m also a big fan of the organic inclusion of disabled people like my son in regular campaigns – not as a ‘special’ addition, but just as a matter of course.

Bravo to Leroy for expanding the diversity of the Little Green Car’s portfolio.  This is much more than a picture.  Aaron’s inclusion in Miguelito’s Little Green Car project demonstrates to our son that he matters too.