Everybody Grows Up

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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

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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.

Far from the Tree Documentary

I lug the book Far from the Tree, all 962 pages of it, around with me to family meetings and client sites at children’s hospitals and disability organizations.  It is a meticulously researched and beautifully crafted book on parenting, and more importantly, on love and acceptance.  Andrew Solomon has written a masterpiece.  This book has moved me so much that I titled my essay that I wrote for the New York Times Far from My Tree. (It is a piece written about my punk rock son, inspired by Solomon’s work).  Solomon has helped me dig deep about parenting all three of my children, who are different from me in their own unique ways.  It made me ask:  did I really have children to create versions of Mini-Me?  Or was it my job to unconditionally love, support and accept them to be full versions of their fine selves?

I’ve been scrounging around to find a way to bring the Far from the Tree Documentary to Vancouver.  GREAT NEWS.  It has been released on Netflix Canada.  If you love or work with someone with a disability, please take 90 minutes of your time and settle in and watch this exquisitely crafted film by Rachel Dretzin.

Solomon has broken the fourth wall to tell his story as an author and what writing a book about parents, children and the search for identity meant to him.

Writing this book set me free.  It broke me out of the narrative from my childhood. -Andrew Solomon

His parallel story as a gay man is gently presented along with stories from Jason, Jack, Trevor, Loini, Leah and Joe.  Jason is 41 and has Down syndrome, like my 15 year old son.  I watched the segments with Jason closely. He’s the son of Emily Perl Kingsley, who famously wrote the essay Welcome to Holland.  (Anyone who has a child with a disability has been gifted this essay by well-meaning friends).  Jason speaks many truths.

Here in reality, everyone is different. -Jason Perl Kingsley

Jason is right, of course.  We are all different but us typically-developing people are terrified of difference and shun this reality. Far from the Tree examines this paradox with little commentary and judgment.  The stories are strong and stand on their own.

I especially loved the film for the space it gave to the people with disabilities to do the talking. Us parents normally take up a lot of airtime, when we should be making room for our loved ones to speak in any way that they can.  I’m learning this lesson slowly as my son gets older.  His story is different than my story.  He lives with disability.  I do not.

Joe is a philosophy professor, has dwarfism and is eloquent with his words.  “What body you are in has everything to do with your perspective in the world,” he says.  “It surprises people when I indicate that I’m not suffering.”

Far from the Tree offers up a lot to think about.  As Joe points out, physicians see normality as the end goal.  But why is that?  To what lengths do we chase the normal?

The dad of Jack, a young man who is autistic and non-verbal, tearfully says about his son,  “He’s abnormal in a really good way.”  Far from the Tree rightly challenges the concept of normal and offers up the question:  what makes us human?

I’ve always thought the disability community and its allies could learn much from the LGBTQ2S world.  As Solomon asks, drawing a comparison between the two worlds:  Is defectiveness a matter of perspective?  How does illness become a celebrated identity instead?

How do we decide what to cure and what to celebrate?  -Andrew Solomon

I wept at the tenderness of this film: the scene of Jason at the museum with his mom, the image of him sitting on his back deck with his two roommates.  Andrew Solomon walking arm in arm with his father, Trevor’s family gathered around the video screen to talk to their incarcerated son.  Loini meeting people like her for the first time at the Little People’s convention, Leah and Joe dancing quietly together on a rooftop.

I thought about my own instinct to protect my son to the point of overprotectiveness. I thought about all the therapy we subjected him to in his early years.  I thought about how hard he tries to fit into the regular world, and what joy he finds with other people with Down syndrome.  I thought about fixing and curing vs. love and belonging.

Far from the Tree, the book, and now the movie, has made me think about all this in a good yet hard way.  I thought about my son and how, as the movie says, he has his own mountains to climb, which aren’t my mountains – they are his mountains.  I thought about how I can support him to do that.  I thought about how it is also my job as his mother to set him free.

What am I looking for from any book or a movie?  I want to be surprised or validated.  Far from the Tree magically does both.  Through stories, it asks many questions that only you can dig deep and answer for yourself.  That’s what good art is all about:  to see another way of reality that is not your own and to help you question what you think you already know.  Far from the Tree is poignant storytelling at its best.  It touches hearts to change minds.

Pura Vida

I wish that every new family who finds out their baby has Down syndrome could see this goofy little video.  I wish that every physician who discloses a Down syndrome diagnosis would watch this too.

This is my son Aaron boogie boarding in Costa Rica last week.  Aaron is 15 years old and has Down syndrome.  He also gleefully jumped off the second level of a boat into the Pacific Ocean (four times) and went for a long hike in the jungle where we encountered a troupe of wild capuchin monkeys.  (That was AMAZING). These were all hard-fought victories for him.  It took many years of swimming lessons for Aaron to be confident enough to put his face in the water, never mind jump off a boat.  Even five years ago, he’d balk at the notion of going for any kind of walk by sitting on the ground and refusing to budge.  It has taken supportive community support folks, Physical Education teachers, Special Olympics, a move to a warmer climate and many meandering walks to the grocery store to get him to the point of hiking in the jungle.

Pura Vida is a popular saying in Costa Rica.  It roughly translates to ‘a slower life’ or a ‘pure life.’  A more literal translation from Spanish is ‘nothing but life.’

While Aaron is not on this earth to inspire us (as explained well by the late great Stella Young), he does live a full life.  I did not know this was possible when he was first born.  Everybody told us how hard life would be, but nobody told us about the Pura Vida.  Our family has made damn sure that Aaron lives a good life (and we do too, through our fortunate association with him).

How I wish I had a crystal ball during the dark time of Aaron’s diagnosis almost 16 years ago to catch this little glimpse into his future.  How I wish that instead of being handed that stupid book about every possible thing that could go ‘wrong’ with babies with Down syndrome that I had been connected with another family with an older child to see that our lives were not over. In fact, Aaron’s diagnosis offered us the beginning of a new life instead.  Yes, in many ways having a son with an intellectual disability has made our lives slower. But a slow life is not a bad life.  It is just a different life.  And don’t you think we all could use a sprinkling of a little Pura Vida too?  xo.

good inclusion

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I read the Globe and Mail article today with the rather misleading headline: Are Inclusive Classrooms Failing Students?  (I’d edit this headline to say people are failing students, not inclusive classrooms).

I feel deeply for the families who shared their stories for the piece.  I’ve been one of those families.

We can blame the system but the system is made up of people.  Never forget that.

My son is 15 years old and in Grade 10.  He has Down syndrome.  His story of inclusion is a rocky one, especially in the elementary school years.  His experience from grade 1 – 3 was so bad – and included torment by boys in his classroom that went wholly unaddressed by the principal – I think because the main perpetrator was the son of a prominent lawyer and doctor – that we sold our house and moved across the city to get him into a more welcoming school where we knew he’d be safe.

It was then we realized that each school is different and each year is different, depending on the mix of other kids, families, principals, teachers, Educational Assistants and school districts.  If even one of those factors is misaligned, inclusion is so precarious that the whole house of cards comes tumbling down.

I don’t want to dwell on the bad inclusion.  I want to offer hope to families who have loved ones with disabilities.  It can get better.

Now Aaron is in his third year of high school.  He attends all regular classes – classes that he himself chose – including two academic classes.  He does not balk at going to school now.  As far as I can surmise, he’s happy and importantly, he’s learning and growing.

His first year of high school was a tough transition.  He tested the teachers and it took them some time to get to know him.  But then one unusual thing happened.

In November that year, the special education teachers asked me if I wanted to speak to the school’s Professional Development Day about what inclusion means to our family.  This was my last big talk before I was diagnosed with breast cancer.  Believe me, I took this talk very seriously, as I had a sense about how seminal it was.  I prepared extensively  – interviewing many other families about what they wanted me to share.  I talked to Aaron at length about what was important to him.  (I wrote about what I said here).   It was the most important presentation of my life.

This was because I had a chance to share family stories with the teachers – almost 100 of them – about what mattered to families like mine.  On the day of the talk, I was a sweating nervous wreck.  Thankfully, the audience listened graciously, about what was important to Aaron and to other families who had children with disabilities.  I also spoke about how inclusion benefits the other kids, and how disability is part of diversity just like race and gender orientation.

The teachers’ openness to listening to family stories was everything.

I have been ‘that’ mom for years.  But after the teachers heard my stories, something shifted.  Maybe I was was no longer the difficult ‘special needs’ mom.  Maybe I was someone like them, a person who had something unexpected occur in their life – in my case, I happened to have a child born with a disability.  I was firm in my assertion that my kid had a right to an education just like any other kid.  I was clear that Aaron wasn’t just a problem – he was in fact someone worthy of love and belonging, just like anyone else.

I’ll never know if my talk made a difference.  I don’t think I am the best speaker in the world or that I imparted great wisdom.  But I did tell my story, and shared elements of other family stories, and the teachers did listen.  I do believe this helped Aaron be understood and accepted, even a little bit.  At Aaron’s high school, I have a strong sense that the leadership and teachers believe in Aaron.  That’s so crucial.

I’m writing this post as our little family of three is in the middle of a sleepy vacation.  Today we were in a surfing store.  I noticed the owner watching Aaron intently.  Finally he said, “I have a son with Down syndrome too.  He’s three.”  We talked for a few minutes about how his son was doing and also about how hard life is sometimes.

As I was going out the door, I turned to him and said, “Ah, but it is the most important things in life that are hard.”  He paused and nodded.  We smiled at each other, our secret shared.

The most important things in life are hard.

For the families struggling, I want to say that things are hard because they are important.  I agree that it isn’t fair and it isn’t right.  But also I know you can do hard things.  Keep speaking up.  Keep sharing your stories.

For the educators, please make the space to listen to family stories.  I promise you it can make all the difference in many people’s worlds, including your own.

won’t you be my neighbor?

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I handed my ticket to the usher at the movie theatre. He glanced at it, looked at me and said, “Won’t you be my neighbour?” I smiled at him and said, “Why yes I will!” We exchanged grins in the moment before I disappeared into the dark theatre. It was a brief spark of connection at the end of a long day.

My eldest two kids will tell you that they didn’t have a television in the 1990’s when they were little. They had a gap in their media references when they went to school, until I introduced DVDs into their lives so they could catch up. They mostly watched Sesame Street and Blues Clues, but Mr. Rogers was on their radar. I didn’t really understand the soft-spoken man in the cardigan. After watching Won’t You Be My Neighbor? I have had a 90 minute glimpse into his wisdom.

This is not a movie review; this is only my own thoughts about the relevance of Mr. Rogers’ philosophy in today’s messed up, beautiful world. While the news and Twitter remind me how messed up we are, I look outside and see the trees, blue sky and mountains.  The Mr. Rogers movie reminded me that the world is beautiful too.

I wept at the sweet innocence of Won’t You Be My Neighbor. There was a lot of sniffling in the theatre, so I know I wasn’t the only one.  The main message was: you are loved exactly as you are. This is what Mr. Rogers repeated over and over to children throughout the decades. If you are loved exactly as you are, this means love is not withdrawn when you stumble or aren’t perfect. This is a powerful message to impart to children. I think of how much pain in this world could have been avoided if we all felt loved and attached.

Mr. Rogers was not himself perfect or without his critics. There are those who think that telling each and every child that they are special has created generations of entitled adults. I call baloney on that. Every child is special and so every adult is too. You shouldn’t have to ‘work hard’ to prove your worth. You are worthy simply because you are human. Part of Mr. Rogers’ background taught him that everybody is loved by God, no matter what.  The no matter what part is really important.

Brene Brown has written extensively about feeling worthy. Dr. Robert Maunder is in the midst of releasing a compelling set of stories called The Damage I Am about a man struggling with his own worth because of childhood trauma. The podcast Other People’s Problems often has episodes echoing the same theme.

As Mr. Rogers says: “Love or the lack of love is the root of everything.”

Towards the end of the film, there is a scene where Mr. Rogers meets a young man named Jeffrey Erlanger, who is quadriplegic and uses a wheelchair. Having my own son with a disability, I sat up and paid careful attention. Just watch Mr. Rogers’ conversation with Jeffrey.

Notice how Fred Rogers carefully listens to Jeffrey. He acknowledges Jeffrey above his wheelchair and praises him for his extensive knowledge of his medical conditions. Fred brings up the notion of being blue and confesses to feeling blue when he was a boy.  We learn earlier in the film that Mr. Rogers was often sick as a child.  Perhaps this is the foundation of his empathy.  Jeffrey and Mr. Rogers sing the song “It’s You I Like” together.

I wonder if I’ve imparted unconditional love to my own son with a disability.  If we’ve had the right balance of therapy and acceptance to ensure he doesn’t believe himself broken and for him to believe that he is loved exactly as he is.

I work on telling and showing all my children that they are loved – no matter what – every single day. Some days are better than others. On the bad days, my own personal pain that I’ve been carrying around for a very long time gets in the way. So the next day I get up and try again.

I believe that imparting both the knowledge and feeling to children that they are loved is the most important work of a parent.  People and governments who block children from this love are the purest kind of evil.  This need to believe in our hearts that we are worthy continues into adulthood too.

The movie ends powerfully with Mr. Rogers asking for ten seconds of silence to think of those who have encouraged us to become who we are today.  I invite you to close your eyes and think of your special person too.  (For me, this is my grandma).

Today, take a break from CNN and Twitter and get outside instead.  Out there, look for the good in the world, the helpers.  We all can be helpers, starting with the children.  Thank you Mr. Rogers for this gentle + timeless reminder. xo.