everybody has mental health

mental health

Earlier this week, I attended a session on Optimizing Mental Wellness in People with Down Syndrome at the Down Syndrome Resource Foundation.  The speaker was Susan Fawcett, their Director of Therapy, Behaviour and Family Support.

Susan’s presentation reminded me how my own mental health and my kid’s mental health are all wrapped up together.

It makes me a wee bit nervous to talk about mental health. First there’s the regular ole mental health stigma.  Then there’s the incredible pressure I feel to be the strong mom who advocates for system change all the time.  I even feel pushed into cheerleader mode, aka: Everything’s Fine!  Fine!  Fine!  My kid is the best kid with Down syndrome EVER!  

Of course, that’s all bullshit.

Here I will repeat my mantra:  Being a human being is stressful.  Having children is extra-stressful.  Having a kid with Down syndrome adds yet another layer of stress.  But 95% of my stress comes from systems (health, human services and education sectors) and the hostile, ignorant ableist world.  This is not my son’s fault.  I won’t talk about his mental health here because that’s his business, not mine.  I don’t want to trod on his dignity.  But I can talk about my own struggles.

If we are truthful, we all have mental health stuff, whether we have a disabled kid or not.  It just takes becoming vulnerable for our stuff to be exposed.  I soldiered through the strong mama bear persona for 13 years after my son was born.  It took getting cancer two years ago for my whole house of cards to come tumbling down.

How I wish I had been more preventative about my own mental health.  I should have regularly seen a mental health professional to at least deal with my own childhood stuff. But I didn’t – the crisis of cancer is what introduced me to the therapist’s office.  Now I think and talk about mental health a lot.

Susan’s presentation was timely for me.  She offered helpful strategies for mental wellness, both for our kids and ourselves.  Susan gave me kind permission to share her talk, so I’ve summarized her points. As she told me, she wants to give this mental health piece more airtime.

Mental Wellness Strategies for Children with Down Syndrome – Susan Fawcett

  1. Help your kids engage in activities to experience both pleasure and mastery.  Susan called this behavioural activation.
  2. Make sure your child has a peer group of children of similar intellectual ability, especially starting in late elementary school.
  3. Consider social skill training, like the Zones of Regulation.
  4. Always look for self-esteem boosters for your child, like chances to be more independent + have choice, opportunities to teach others and regularly talk about your child’s strengths and unique talents with them.
  5. Give your children regular praise.  Interesting, Susan has observed us parents don’t offer enough specific, enthusiastic praise to our children. I’ve been guilty of that – falling into ‘corrective’ mode with my own son, which is a way of being that is focused on the negative.  I’ll be more aware of this going forward.
  6. Cognitive behavioural therapy can help all of us – of course including people with intellectual disabilities too!
  7. Talk to your child early and often about having Down syndrome.  (Books like Paint the Octopus Red can help explain genetics and for older kids, shows like Born this Way are awesome for role-modelling and offering a glimpse into the future).

Mental Wellness Strategies for Families – Susan Fawcett

  1. Acknowledge having a child with an intellectual disability is stressful.
  2. Organize date nights with your partner.
  3. Finding a social support network is crucial.
  4. Begin a mindfulness practice to help with stress.
  5. Take advantage of informal or formal respite.

For families, I’ve written about the concept of self-care before.  Self-care is way more than bubble-baths.  Here are my essays:

My small comforts list
Moms and Mental Health
Beyond Bubble Baths
Leaning Out

Dr. Yona Lunsky also wrote a great piece about this topic for families called Save Some Love for Yourself.

As Susan importantly pointed out, kids with Down syndrome have high levels of empathy, meaning they are more in tune with our own moods and stress level.  If we don’t overtly care for our own mental health, it will affect our kids.  This alone is a good reason to at least start talking about mental wellness in safe spaces in our own community.

If you are hesitant to look at your own mental health, at least do it for your children.   After all, your head is screwed onto your body.  We are in such denial about the simple fact that human beings also have rich mental and emotional lives. You do not have to wait until you get cancer like I did to take care of your whole fine self.

my take-aways

dance

Last man standing on the conference dance floor on Saturday night.

I haven’t been to a Down syndrome conference in many years. As a young mom, I was a conference keener. I attended World Down Syndrome Congresses, our national conference and scores of local events. I spoke, I volunteered, I organized. Then I got very tired. I became pre-occupied with advocating for Aaron in school and I disappeared from the conference circuit for the next ten years.

Just last year, I ventured out to a talk about housing. There were three moms on a panel. They spoke about how they pooled their time, talents and resources to come up with creative solutions to counter the struggle to find housing in the Lower Mainland. I learned from them that you can’t depend on the government for anything. I was also reminded that us families need each other.  I realized that I had to start showing up again.

So this weekend, Aaron and I went to the Canadian Down Syndrome Conference in Victoria. There I was moved to tears. I had a fabulous time catching up with other moms. And I felt terribly proud of my son.

My main intention for the conference was for Aaron to have fun in the Teen Program. (This was accomplished).  For my own experience, my dear friend Helga wisely said, If I learn even one thing to take away from the conference, I’ll be happy. I took her lead and distilled all my learnings from the sessions to one simple take-away:

Provide opportunities for people with Down syndrome to speak for themselves. And most of all, listen to them.

The sessions each offered a lesson to take away and apply to real life. Here’s my summary of what I learned from each break-out session.

Shelley Moore
The guru of inclusive learning is a crackerjack storyteller. From her I learned about the concept of congregation. She said conferences like this one for Down syndrome are about congregation not segregation. This means we choose to be together as a community because we want to – not because we are forced to. May we all seek and build our own congregations with groups of people where we are welcomed and feel a sense of belonging.

Dr. Dennis McGuire
The former Director of the Psychosocial Service for the Adult Down Syndrome Center in Chicago, Dr. McGuire renewed my admiration for my son and other people with Down syndrome. Dr. McGuire explained the positive aspects of behaviours like grooves and self-talk. His deep respect and love for people with Down syndrome came through. I appreciated his strength-based approach that helped me understand how resourceful Aaron actually is as he navigates his days in a sometimes-hostile world.

Mary Harber
Ah sexual health, everybody’s favourite awkward topic. From Mary I learned that sexual education is not only about sex. It Is about learning how to be a friend and a respectful partner.  It is essential for us to teach Aaron how to be a good man. She also showed the video the Guest Room, which offered the poignant message that everybody grows up.

Elaine Willcock
This session won the prize for my favourite unexpected break-out session. Elaine presented about starting a self-advocacy group for adults with Down syndrome. I loved this talk and was glad I picked it. The best part? Adults with Down syndrome with all speaking abilities presented their perspectives:

The group taught me that we are not alone. I have more confidence to speak and I am not afraid to share my ideas. -Self-Advocate

I learn so much from the wisdom of moms who have older children. My main take-away – to take the time to listen to people with Down syndrome themselves – was reinforced in this session.

VATTA Panel, moderated by Tamara Taggart
This was the best. Six adults with Down syndrome shared their experiences about growing up, working and moving out of their parents’ home. The panel was hilarious, heartfelt and real.  Tamara did an awesome job of moderating the lively, passionate panelists.  My take-away was from a mom of one of the participants. She said, My son has surprised me every step of the way. I need to allow Aaron the space to surprise me.  This means giving up some control.

The challenge after every conference is to figure out a way to integrate the conference learnings in real life.  My commitment is to continue to work on my own tendencies to over-protect and hover over my son.

My take-away was put to the test a few hours later.  On the way home, Aaron said he wanted to walk around the ferry by himself.  I protested, worried he’d get lost on the many decks.  I have my phone with me Mom, he said firmly.  I want to be independent. It doesn’t get any more clearer than that.  Listen to the people with Down syndrome.

OK, I said hesitantly, and off he went.  He returned about 20 minutes later with a big smile on his face, pleased to have found some freedom.  The hardest part of parenting has always been letting my children go.  But everybody has a right to grow up, including my son with Down syndrome.  I’m not sure how to do that, but I have a feeling if I just take the time to listen, Aaron will show me the way.

 

He is Down syndrome

EW_web_1

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.

I See You

play.jpg

Aaron + his mama. (Shared with his consent).

Last night, Aaron and I got fancied up and went to out to a play. He wore his suit jacket and a black tie and I changed out of my regular mom jeans into a green velvet dress. This was a big occasion for us.

This is the Point was playing at the PuSH Festival at the Cultch Historic Theatre in Vancouver. This play initially caught my eye because the two lead characters, Tony Diamanti and Liz MacDougall, are actors with cerebral palsy. They share stories about their own lives along with Dan Watson (and Christina Serra, represented by video), the parents of their nine-year old son Bruno, who also has CP.

Aaron doesn’t have CP; he has Down syndrome. But I’m not sure the difference in diagnosis matters that much – he lives the common experience of being disabled. He enjoys his grade 10 drama class at school and is becoming more interested in live theatre. A play featuring actors with disabilities is an unusual thing. (It shouldn’t be. But it is). I think it is my job as his mom to show him what is possible.

This is the Point is a real-life montage of stories, shared through live performances and video vignettes. It includes audience participation – we were encouraged to read Tony Diamanti’s words out loud as he pointed to letters on a communication board. I loved this invitation to be a part of Tony’s world – a contrast to the common notion that disabled people must always fit into our abled-bodied spaces.

Before the play began, Dan wandered about the audience handing out Hershey kisses. He then announced, ‘We do things at our own pace,’ to set the tone for the show.

The play is a peek behind the curtain of having a disability and being parents to a child with a disability. It gave space to stories that are told but not often heard or acknowledged by the general public. The play explained communication devices, talked about consent (or lack of it) and touched on abuse.

I think that stories can teach you something new or validate what you already know by creating a mirror for your own experience.

Here’s the something new from This is the Point: disabled people don’t always communicate as we do, they have a sense of humour, curse, are sometimes horny, have sex, fall in love and drink vodka. The question for me is: why should this be new to me? How does being surprised by this reflect on my own misconceptions about adults with disabilities? As human beings, we are all the same. And we are all different too.

This is the Point offered a commentary on my own experience as a parent too. Dan recounts a heart-breaking scene from his local playground, where the neighbourhood kids keep asking about Bruno, over and over again: What is wrong with him?

“Why do I have to keep explaining why I love my son?” asks Dan, exasperated in response.

I’ve felt that pain too. Playgrounds are an especially cruel place, a petri-dish for children whose parents who have never to bothered to explain about disability or kids who are different. At another point, Dan exclaims, ‘Suck it doctors!’ in reaction to the doctors who told him everything his son wouldn’t do. I almost stood up on my chair and cheered.

After the final applause, I leaned over to Aaron and asked what he thought. I wondered how it felt to see disabled people in a play.

“Good!” he said enthusiastically (although he hid behind his suit jacket during the ‘sexy’ scenes). He was eyeing the actors, who were all still on stage chatting with audience members.

‘Do you want to meet them?’ I asked. ‘Yes,’ he said, ‘but come with me.’ ‘You go,’ I suggested, always eager to pull back from my hovering mother role.

He took a breath, marched up to Liz MacDougall and extended his hand. They looked at each other, smiled and shook hands.

‘Did you say anything?’ I asked when he returned. ‘No, I shook hands,’ he said. Somehow that handshake – the congratulations, the job well done, the nice to meet you, the thank you – was simply enough.  Aaron does things in his own way and that is how it should be.

Thinking about the play, I thought how rare it is for Aaron to see himself reflected in anything other than fundraising or awareness campaigns. We need more stories like This is the Point in our increasingly polarized world. Not as ‘special’ stories, but as stories as a matter of course, on regular rotation, in the media, performing arts, literature and film.  I promise that when I find them, I will amplify them.  And you can too.

You see, if you open your eyes and bear witness to stories that are different from your own, you never know what you might discover (mostly about yourself).  Bravo to the This is the Point cast and crew.  You made your point and you made it well.  xo.

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.