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.

The Wonder

kids

My kids: Ella, Isaac + brand new Aaron, 2003.

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018.  It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings.   You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

 I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

good girl

kindergarten
I was once in a workshop about broken people like me.
The grief counsellor said:
My story is my story.
And your story is your story.
And it is okay for them to be different.

People clutch their stories tightly, with white-knuckled hands.
Like purses stuffed with money in a late alley.

For instance, I have been told I should stay in my lane at all times.
Behave and be good. Do not be angry. Stay the rigid course.
And most of all be small in all ways.

If I step out of line, this rattles those who think they own the one story of me.
After I veer into my own way
Their horns honk loudly before they slowly fade away.

moms + mental health

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this super cool pin is from http://www.noraborealis.com

I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons.  First, my thoughts are kind of a mess.  The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability.  The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.

(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters.  Their feelings are valued and significant too.  But their stories are different from my story.  Here goes…).

If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.

When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.

This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart.  I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work.  I also grieve for my older two children who have grown up and left the nest.  I miss them a lot. There is loss there too, but in a different way.

Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.

People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).

Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too.  Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible?   Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.

There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.

In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally.  Don’t be afraid of being still.  Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day.  This is okay because I’m perfectly imperfect too).

I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.