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

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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.

I See You

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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.

The Wonder

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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.

The Affronts to My Human Body

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As I get older, I have become an accumulation of scars. A hernia repair when I was 8 years old left two faint, raised scars. Two attempts to remove an ovary resulted in a keloid in my belly button and other healed wounds from laparoscopic oophorectomies. (The term oophorectomy still makes me giggle). My partial mastectomy early this year left a one-inch scar that just peeks out of my bikini top. I have another scar and a lingering hematoma under my arm from lymph node removal.

I understand the medical need for these scars. They are evidence of removing things that were causing me trouble. But there have been other, unnecessary, affronts to my body.

In the process to be diagnosed with my bleeding disorder (von Willebrands, a common malady that is not hemophilia, but it is severe enough I wear a Medi-Alert bracelet because of it), a lab tech cut me three times with a razor-blade. She cut me. I couldn’t freakin’ believe it when it happened. I said: YOU ARE CUTTING ME WITH THAT? She said yes and then she cut me. They wanted to see how long it took me to clot without medication, with a bit of medication and with a lot of medication. (They administered the medication by stabbing me with a needle in my stomach, which was not pleasant, but at least it was temporary).

The three scars left from this bizarre diagnostic procedure are not temporary. They are on the underside of my forearms and they are permanent. It looks as if I might have had a cutting problem (I didn’t).   I am not pleased that nobody has thought of another way to test for von Willebrand’s without cutting people with razor blades on visible places on their body.  I think we can do better than that.

Along with scars, breast cancer gifted me with a blue nipple (that is thankfully fading) and two permanent radiation tattoos. When I was in for the appointment to prep for radiation, the Radiation Therapist took out this box thing with a needle and ink. And then she proceeded to poke me with it in two places – right in my cleavage and on the side of my ribcage. This was bizarre and these tattoos look like blackheads. I asked if she could at least make them into flowers but she didn’t think that was funny.  They put stickers on me, too, and drew on me each radiation treatment with a pen. That didn’t bother me so much, but it does disturb others. One woman on Twitter recently said the markings made her feel like a piece of meat. I can totally see that.

I asked a friend who is a Radiation Therapist – why the need for permanent marks for radiation that is over in four weeks? She told me that we get tattoos because other ‎marks or tape wash off and there isn’t a semi-permanent alternative.

This all seems weird to me and falls into the category of: what is a big deal for me isn’t a big deal for health care professionals.  What I don’t like is the permanent nature of something that the hospital only needs for a few weeks.  This seems to tread on my dignity.  It strikes me that there are many ‘side effects’ from procedures in the hospital that are shitty for patients, but convenient for clinicians so nobody does anything to change it.

My friend did add: there is quite a bit of research looking at alternatives like henna, UV lighting and “invisible” tattoos and external surface landmark light systems.  To this, I say: YES DO MORE RESEARCH. As a patient, this is important to me. I don’t want a stupid blackhead tattoo looking at me for the rest of my life. If patient like me were engaged to set priorities in cancer research, I’d ask to figure out a way to get rid of the damn permanent tattoos, pronto.

Little black dots might seem minor in the grand scheme of things, but I didn’t like losing even more control of my suffering body one little bit. I asked my nice oncologist if it was medically okay to get a tattoo on my breast to cover up their tattoo. He said very solemnly, ‘there are no counter-indications to getting a tattoo.’ He probably thought: this woman is clearly in the middle of a mid-life crisis and losing her marbles, but he was too polite to express any judgment.

So I travelled to Hawaii and got my very own tattoo to cover up the radiation tattoo on my breast. I went to a place in Maui called Hula Girl Tattoo. The young dudes working there have seen everything and they didn’t even blink at my request. I told them they were doing good work covering up a middle aged mom’s cancer tattoo.

Part of getting my tattoo was to say: Take that health care system! I am in charge of what permanent marks adorn my body!  I’m also going to send the cancer agency the bill for the tattoo and see what happens. It was $200 US. (KIDDING. I AM KIDDING).

More seriously, I have this pipe dream that one day patients will work together with health professionals to set research priorities to figure out how to minimize the many indignities that are inflicted on us in hospitals.  Then we will no longer have cuts on our arms or permanent radiation tattoos.

I love the way every personal tattoo has a story behind it. (I also have three birds on my shoulder that symbolizes my three kids growing up and spreading their wings).  My new radiation-cover up tattoo is a constellation of hearts with a sprinkling of stars. A purple star has replaced the ugly radiation tattoo. One of the hearts is for my husband Mike, who has been my unwavering rock these past few awful months. (I didn’t think a tattoo of a rock on my boob would be very attractive).   The other heart is for me, to remind me to love myself. I’d post a picture, but the tattoo is in my cleavage. I know my extended family already think I share too much on my blog so I won’t mortify them further by posting boob pictures.

It hurt to get the tattoo, especially the part near my sternum, but Mike was there to hold my hand, exactly as he’s done the past eight months. Tears leaked out of my eyes, not because of the pain, but because I felt grateful my treatment is done, my cancer was caught early and I’m alive to tell this tale. My new tattoo is a symbol of my own story having cancer. This is my story to tell, not cancer’s. Slowly, slowly, I’m taking my power back, one heart in my constellation at a time.

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good at basketball

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Today my youngest son won the Most Valuable Player Award for his school’s basketball team.  He was chosen by his coach to receive the most prestigious of all awards because he never missed a practice or a game, gave his best effort every time, demonstrated a positive attitude and never ever complained.

When Aaron’s name was announced, the crowd erupted in cheers.  A young girl came rushing up to Aaron to give him a hug.  (I spoke to her Educational Assistant afterwards and she said she and Aaron are great friends).   I was in the audience and I’ll admit that I cried like a little baby.

“I am FAMOUS!” was Aaron’s initial enthusiastic response.  Afterwards, when asked why he won the award, and he shrugged and said, “because I am good at basketball.”

Recently I wrote about the whole Mascot Thing and how Aaron was truly part of this team.  I’m not going to analyze his award and think:  Was this tokenistic?  Did he get it because he has Down syndrome?

No.  He is MVP because his coach decreed so.  Period.  Explaining it away because he has a disability is wrong. Why would I diminish this recognition for him?

I cried because I am proud of him. I cried because he’s my Most Valuable Player too. I cried because he experienced belonging as part of of a team.  I cried because his coach gave him equal playing time at every game. I cried because someone believed in him.  I cried because it hurts his knee when he runs, but he ran his fastest every game.

Yes, I also cried because sometimes my life is hard.  I cried because of all the stares in the mall, the questions about prenatal testing, the lack of mom friends in the school yard, the fights to get funding, the forgotten birthday invitations.  Did I selfishly cry because of all the struggle and society-induced pain?  Maybe.  But screw all that today.

Aaron’s victory is 100% his.  Nobody gifted to him.  He won it because his principal and coach gave him the opportunity to play.   He earned it fair and square.  He won it because he’s good at basketball.  He won it because if you crawl out of bed early on Monday mornings to attend 8 am practices, carefully pick your water bottle and basketball shoes, pack your own gym bag, listen to your coach, show up to every game, work hard in spite of your limitations and fully pour your heart into your passion, one day you might be lucky enough to be recognized with an award.

To me this MVP award is a simple reminder that life is generous and sweet.  Tonight, we celebrate Aaron.  Hamburgers & fries all around!

love has no labels

This song by Macklemore and Ryan Lewis – sung by Mary Lambert – has always had the power to make me cry.  Now it is set to a powerful new video from the Ad Council (yeah, they are supported by a bunch of big companies, like Coca-Cola, but their message is still worth watching).

It is a good reminder of what is important in the world.  As I like to say, love always wins. If you choose love, you can never ever lose.