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.

The Sinister Side of Patient Engagement

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I was a patient engagement person before there was such thing as patient engagement. Ten years ago, I was a mom who was hired by a hospital to advise leadership about family-centred care.  Back then, us family advisors were pioneers, cowboys in a new frontier.  The movement was focused on making the experience in the hospital better for families by creating a family council and it grew from there.

Something more sinister has accompanied this growth. While some hospitals maintain the purity of these patient engagement jobs by hiring those with lived experiences, others have sought to dilute it by hiring staff who do not even demonstrate compassion for the patients and families that they are supposedly to serve. Today, it is often clinicians who are hired into leadership positions in patient engagement, citing: ‘but everybody is a patient!’ – leaving authentic patients and families behind in their dust.

I’ve been despondent about this before, throwing my hands up and despairing: Patient Engagement Has Been Stolen From Patients, but after reading Isabel Jordan’s essay Patient Engagement: You’re Doing it WrongI grit my teeth and dig in my heels, solidifying this stance.   Please take the time to read Isabel’s important story.

How can these new Patient Engagement leaders get it so wrong? How is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone? I’ve gone on and on about the best practice of patient engagement: here, here, here, here, here, here, here, herehere.  Here’s an example of best practice, to contrast Isabel’s horrible awful experience.

If you are working in the area of patient engagement, consider Isabel’s piece very carefully. If you truly are a professional, you will welcome constructive feedback and reflect on what you’ve learned and how you are going to change your practice based on your learnings.  Perhaps you see an element of yourself mirrored in her words.

If Patient Engagement is becoming a profession, there needs to be accountability for it. Like other health care professions, Patient Engagement needs to protect the public they serve – through common best practice, standards, training + continuing education requirements and a path for the public to report misconduct and follow up with disciplinary action. If the health professionals have stolen patient engagement from us patients, then they need to start acting like professionals. Not rude, inconsiderate and disrespectful of the people they are supposedly committed to collaborate with.

Thank you Isabel for sharing your story and wisdom with us. Please share her post widely with those who engage patients: in health authorities, governments, hospitals, research projects, health affiliated organizations – anybody who says they engage patients. Patient engagement, patient experience people – wondering if you are doing a good job?  Turn to the patients and families and ask them.  That’s the only way you’ll ever know.

Never forget, it is an honour to work with patients and families in any capacity. Words are hollow here. If you don’t demonstrate to us through your actions that you believe this work is about serving people, you are in the wrong field of work.  

All the Feels: The Breast Biopsy

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Since I started writing about breast cancer on my blog, I’ve had the good fortune to hear from some lovely women who are in the midst of their own cancer scare or cancer experience, which of course starts with diagnostics.

On any given day, there many women (and some men too) are waiting for a breast biopsy appointment. While I was handed a mountain of patient education pamphlets over this past year, nobody told me how a procedure or test actually feels. Here’s my take on my own breast biopsies, with the important caveat that everybody’s experience is different – because of differing personalities, way to cope with stress, type of biopsy, health care environment and health care professionals.  This is a personal insight into the way I felt last year this time.

1. Waiting Sucks

The waiting really is the hardest part. When the day of your biopsy comes, you put your head down and get it done. But waiting beforehand can be excruciating. Acknowledge that it is hard. Be kind to yourself. Use whatever distraction and comfort methods work for you. For me, it was long walks, movies, Netflix, baths and sleeping. A beautiful healing book I read during this time was Birds Art Life by Kyo McLear.  Looking back, I realize that it was torture to wait but somehow you just do it, one day at a time.

2.  Nuts + Bolts of a Breast Biopsy

I’d recommend getting a ride there and back.  I was anxious during the drive there and afterwards I was sore and bandaged up. Make sure you ask the staff how long you are scheduled for so your support person can go for a walk during your biopsy and not be stuck in the waiting room.

There is no shame in taking your doctor beforehand about anxiety medication. There was no sedation with my biopsies (I had two done at once). Ask your GP about a prescription. For me, it was Ativan.  All it does for me is take the edge off my anxiety and makes me feel ‘ok’.  I don’t like taking pills, but I’ve also learned the hard lesson this year that I don’t have to be strong all the time.

Here’s what I wrote about the mammogram tech at my biopsy:  “The tech there is matter of fact but kind.  She rubs my arm when I get the freezing – I think her kindness is what made me cry.  When I was distorted under that mammogram machine, she brushed my hair out of my eyes.  I think she must be somebody’s mom.”   May you have a kind mammogram technologist and radiologist assigned to you. You can ask them to explain what they are doing during the procedure to help with your anxiety.

The whole procedure is weird.  I had core needle biopsies.  One biopsy involved being positioned in the mammogram machine and being squished and the other one was guided with an ultrasound.  Ask what kind of biopsy you are having.  They give you a needle for freezing before they take the biopsy.  That pinches.  Then there’s this strange ‘box’ that has the core needle in it and they press it down on your like an old-fashioned hole puncher and it extracts the biopsy.  It makes an awful noise.

I looked down during the biopsy extraction and wish I hadn’t because I was bleeding a bit and this made me woozy.

I thankfully kept my eyes closed most of the time, did some breathing like I was meditating and pretended I was on a beach in Hawai’i.  Breathing and visualization has helped me a lot through this whole damn thing.

I walked out with bandages on each biopsy site – which were basically little ‘pokes’, not scars.  My arm was sore for a couple of days from having been in one position for so long.

They likely won’t tell you any results at the biopsy, but you may get hints from the radiologist.  Ask them how long before the results will come in and who will call you. For me, my pathology results came back in 7 days and I got a call about my diagnosis from my family doctor, who had to give me the bad news that I had breast cancer. I hope you are in the 80% of women who have benign results! Again, waiting for results is a horrible time too. My most important tip continues to be: BE KIND TO YOURSELF.  This is a very stressful time even if it isn’t cancer – don’t minimize that.

It is a strange thing to wait for a breast biopsy (or any diagnostics) and then the results.   You don’t belong anywhere – like to a patient community – but you are suspended in an awful purgatory.  I didn’t want to talk to friends who had breast cancer about it because I was worried if my results had come back benign, that might have upset them. I realize now that I’ve had breast cancer, I’m happy to talk to anybody during this awful waiting, whether they end up with breast cancer or not. It does help to connect with folks who have been through similar experiences.

I’ll write more about All the Feels in future blogs…

for mom writers

I’m a mom who is a writer and a writer who is a mom.  I promised myself that I would not write about my decision to not write about my adult children, because frankly, this kind of defeats the purpose of my promise, doesn’t it?

Thankfully, Andrea Jarrell wrote this gorgeous essay in the Washington Post called Why I’ve Quit Writing About My Children for me instead.

In it, she says:  My growth as a parent has been to see that I cannot impose my own narrative on theirs, on the page or in real life.

Read this essay, and it will give you a long, deep pause.  I do tell stories about my youngest son, who has Down syndrome, in my quest to open up conversation about having a child with a disability.  But one day I’ll stop telling his story too.  Because there comes a time when our children are no longer children, and it is their decision to share their stories with the world (or not).  Thank you, Andrea, for this wise reminder.

you can do this

Slide04Eleven years ago, I had a memorable phone conversation with my friend Maureen. I was eight months pregnant, and I had called her for advice. For my third, and last baby, I was determined to purposely go the no medication route, but I was really scared.

My previous birthing experiences went like this: I had an epidural with my first baby, and then no medication with my second. Forceps pulled out my eldest boy because I couldn’t feel to push properly and I’ve never gotten over the guilt for that. That image of those bruises from the forceps on his little face is forever etched in my memory. My second labour was medication free only because I had a super fast labour with my girl and there was no time for intervention (not because I had necessarily intended it to be that way). I remember feeling very afraid.  My labour was induced, so the contractions were terrifying and felt like a bulldozer coming at me, knocking me down over and over again.

I shared my intention to forgo meds if I possibly could to Maureen, who had experienced four natural childbirths. I looked up to her as my birthing mama guru. She was strong as hell.  She said one thing to me that I will never forget: You Can Do This. Those words snapped me to attention, and to this day, I still murmur them to myself whenever I feel fear lurking inside my chest.

I carefully wrote You Can Do This on an index card, and during my long labour with Aaron I yelled at my husband to show me the words. He dutifully held up the card while I breathed my way through my contractions.

You Can Do This turned my labour upside down. Instead of fighting each contraction, and thinking no, no, no, I welcomed the pain because it was evidence that my body was working hard. Each contraction brought me closer to meeting my baby. When I was near the end, close to transition, I distinctly remember that Mike and I were giggling together and shouting: The baby is coming! The baby is coming! It was the strangest thing. Instead of fear, I felt joy embedded in those waves of pain.

Aaron popped out after a few minutes of pushing, and the best feeling in the world is having that fresh baby placed on your chest right after birth. Just thinking of that now, 11 years later, makes me tingle.

Afterwards, the nurse told me, with tears in her eyes, that she had never seen a couple so happy and excited to have a baby. You can do this. And I did.

I want to acknowledge that everybody does not have a positive birth experience, and that not having medication is merely a choice – and certainly not the only way to have a baby. I know that my experience was not only due to determination – luck and good fortune came into play too.

Because I had survived and even thrived through the pain, I suddenly acquired this electric feeling like I could do anything. It was a glimpse into a thrilling world that meek shy me had never seen before.

This place of strength came in very handy two weeks later when we found out that our baby had Down syndrome. My resiliency from that labour spilled over into my life with my son, especially during those early dark days of grief. I am so very grateful that his birth was uneventful (if yours was not, I can promise you that you will make your way). My own experience helped put me on a positive path in our new journey, and along with the love of a good man and supportive mom-friends, it is one of the things that still helps sustain me today.

Maureen’s brilliant philosophy does not only apply to birthing a baby. If you take one thing away from my writing, please know this: You can do this. No matter what it is, you can.  And I believe that you will, too.

preaching about formal peer support programs

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I have been preaching about the value of peer support for families who have children with differences for a very long time.  Parents inherently know that peer support is valuable.  Professionals can be leery of such endeavours, citing risk and encroachment on professional boundaries.  That’s why I continue preaching.  Peer support is not just a ‘nice thing to do’ – research shows that it helps parents gain confidence and hope in challenging situations.

OK, let’s agree that it is a good idea to connect parents together.  How do we do that?  Well, we first need something to connect parents to.  Informal connections do occur (in my case when Aaron was born, the friend of a woman I worked with), but that was just plain luck.

The Visiting Parents Team was created almost 9 years ago for families who have new babies with Down syndrome.  This is a volunteer-led and run program which receives funding from the Edmonton Down Syndrome Society.  It is the only formal community-based peer support program of its kind in Alberta.   The two coordinators of the program are Shelley Wywal and Valerie Myrmo who are trained and experienced.  And they are moms who volunteer their time to do this important work.  They receive a referral directly from a family or a health professional.  They then match that family to two trained volunteers from their team, and a visit takes place.  Sometimes connections are by phone or email.  This program is, at its core, family-centred, and is flexible to respond to individual family needs.  (If you’d like more information, email the family leaders at vpt@edss.ca).

There is a need to continually train new members for Visiting Parents Team.  I did visits for many years, until Aaron got older, and I became immersed in school and the memories of the early days started to fade.  Ideally, volunteers who visit have a child between 2 and 5 years old so their memories and knowledge of early services are fresh.

I spoke at Visiting Parents Team training on Saturday.  I am so proud of this program that I co-founded with two other moms nine years ago.  It continues to thrive and grow due to the leadership from Shelley and Valerie and the commitment of the other volunteers on the team.  There have been 68 in-person visits to new families with babies with Down syndrome, and our formal evaluation last year demonstrated a 94% satisfaction rate.  Families who received peer support commented:

“The doctors and nurses made me feel like having a baby with Down syndrome was a burden on our family. In contrast, VPT said “congratulations!” as her opening remarks”

“Letting me know that my wonderful and perfect child is just that, wonderful and perfect.”

My call to action is that all families with an unexpected diagnosis are given the option to be connected up with their peers in the early days.  This can through NICUs, on maternity units, in rehab facilities, via Home Care, in Early Intervention – anywhere families who have babies or children with unexpected news can be found.

Peer support must be delivered by peers, not professionals.  With training and experience, this is one thing that families can do all by themselves.