I thought the best way to share my son’s talk to a high school class about having Down syndrome was to simply share his presentation. This talk was designed and written by Aaron himself. The only adaptation we did was to provide copies of the speaking notes to the students, in case they had challenges understanding his speech.
I asked Aaron if he was okay with me posting his slides and his speech on my blog. He said yes. (People with intellectual disabilities are capable of giving consent. The problem is that we rarely ask their permission, or we don’t ask it in a way that is understood).
Enough with the mom commentary! Here it is, standing strongly on its own.
Hello, I am the only cool kid in at this school who has Down syndrome. This is what I want you to know about Down syndrome.
There are many kinds of disabilities in the world. Down syndrome is but one of them. I was born in 2003. When my mom and dad made me, I had Down syndrome.
I have three copies of the 21st chromosome. I have 47 chromosomes all together. You guys have 46! I have more chromosomes than you!
How am I different?
My face looks different
I have low muscle tone
I need some help at school to learn
I am the same as you too. How I rock: I like dabbing/flossing, Fortnite, Nerf guns, luxury cars and sports.
What I want you to know is that respect is the key. Respect means I want to be treated the same as you. I just need a bit of extra help.
I am a human being like you.
Aaron delivered the presentation in a lively way, throwing in some jokes, demonstrating how he could bend his thumb back because of his low muscle tone and dabbing and flossing too. Amusingly, when he said I have more chromosomes than you, he added BOOM! IN YOUR FACE!
The students were very quiet. The only time I spoke up during his talk was to say: Aaron is a funny guy! It is okay to laugh. The permission to laugh with Aaron (instead of at him) seemed to help them relax.
I facilitated a question + answer session and there were thoughtful questions about stigma, independence, health concerns and the differences in education systems between provinces. I felt a bit desperate to show them that we have a rich and full life (because we do), so I ended up rambling too much. There are always lessons for me after every talk.
At the end, I made a request. I said if they saw kids from the Access Program (the school district’s ‘special ed’ program) in the hall, not to be afraid to go up and say hi or give a fist bump or high five. At least acknowledging people’s presence is a start on the long road to belonging.
I felt extremely proud of Aaron’s moxie. He stood up and spoke for himself. I was reminded how much he has to overcome to be a part of this world. I admire him so much. His ending comment: I am a human being just like you – offers up with great clarity, everything you need to know about Down syndrome.
Did the talk make a difference? I am not sure we will ever know for sure. But if one person in that class is even just a little less afraid of a disabled person, then Aaron’s job was well done.
This week, my son Aaron and I were invited to give a talk about Down syndrome to a class at his high school. We’ve co-presented once before, three years ago when Aaron was 13.
At that talk, Aaron read a one-page speech to a group of medical students. It was interesting to watch the students’ reactions to him. At first, when he stood up at the front of the room, they looked mortified. I asked them how many of them had disabled people in their lives. Only one of the medical students, out of 20, raised their hands. The concept of a disabled person giving a speech to them – in fact educating them – seemed new to most of them.
Once Aaron started reading his talk, I could see the look of surprise on their faces. Yes, some people with Down syndrome can read – not everybody can read and that’s okay – but some people can. Note: you don’t need to read to give a talk, just the same as you don’t have to verbally talk to communicate. But Aaron reads, so he read from his notes.
By the end of the session, a few of the students approached Aaron on the way out to give him a high five, or to comment on his hockey t-shirt. They made real effort to connect with him and for me it was heartening. It was a positive session. I hope they remember Aaron when they embark on their medical careers, and even the memory of him confidently standing in front of the room reading will dispel a stereotype or two that they might have had about people with intellectual disabilities.
Last week, when the teacher asked if I could come speak to the class and maybe bring Aaron, I flipped the request upside down. I asked Aaron if he wanted to speak to the class and if he maybe wanted to bring me. I explained what the talk would probably be like and who would be in the audience.
‘Sure!’ he said. We were on.
I’ve been considering lately how I do too much for Aaron, instead of with Aaron. Or even better, how I should be giving Aaron the space to take the lead himself. As his mother, I think I have taken away a lot of his agency by making decisions for him. It is high time for me to give him control in his life back. He would agree. He often tells me: “Mom I want my freedom.”
So I’ve included my lessons that I learned in the process of working with him to prepare his slides and speaking notes for the talk.
Lesson 1: It was his decision to speak.
Lesson 2: It was his talk, not mine.
It is always a good idea to ask organizers what they wanted for key messages for the audience. So I asked the teacher what she thought the students would like to know. She said: to dispel some of the myths about potential and abilities about Down syndrome, and to inform about some of the potential physical challenges.
Aaron and I sat down to plan for this talk. ‘Do you want to use slides?’ Yes he said. We opened up PowerPoint and I handed over my computer. He picked his own template. ‘Do you want to type or should I?’ You do it Mom, he said.
Lesson 3: He chose his own template.
Lesson 4: I told him the key messages, but I did not tell him what to put on the slides. I only was the transcriber.
Lesson 5: He chose all his own images.
In the end he had six slides. I guided him with the topics that matched the organizer’s key messages. (This is what I would do if I was doing coaching for any speaker, something I do in my consulting business). He had an introduction slide, then talked about genetics, how he was different and how he rocked. The second last slide is the one that’s pictured above.
“What do you want the students to know about Down syndrome?” I asked. Respect, that’s the key he kept saying so it got its own slide.
For his final slide he wanted a picture of a black hole. He looked around Google images and he chose a picture of a black hole that was embedded inside Earth.
Then he dictated his speaking notes that matched up with his slides. I prompted him only by asking: What do you want to say when this slide is on the screen?
Lesson 6: The words on the speaking notes were his. I merely typed out what he said onto his speaking notes. I repeated his words back to him. Sometimes I suggested fixing some grammar, but otherwise I merely served as a copy-editor. The writer in me bit my tongue. I did not write or ghost-write his talk.
When we got to the last slide with the black hole, I asked what he wanted to say.
“I am a human being the same as you,” he said.
“That’s your final message?” I asked. Yes, he said firmly and definitively.
He then practiced reading his speaking notes. I emailed them to the teacher and asked her to provide copies to the students. People sometimes have a hard time understanding Aaron’s speech, especially if they haven’t developed an ear for him. The notes served as a tool to make his talk more accessible to the students. We adapt and modify where we can.
Aaron presented his talk on Wednesday. I’m waiting on the student feedback from the teacher. When I get the evaluations, I’ll write another piece about how his talk went. That’s for another blog post.
In the meantime, I learned a lot about taking my sticky hands off the steering wheel (as Anne Lamott says) and ‘allowing’ Aaron to create his own damn talk about his own damn self. These are new lessons for me. I’m sure I did still have a sticky finger or two on the steering wheel and I will vow to improve next time.
I’ve been so wrapped up in my own identity of being the mom of a kid with a disability that I’ve forgotten that I don’t have a disability. Aaron’s Down syndrome is his, not mine. I may be an old dog, but this kid is continually teaching me new tricks.
Cancer is everywhere.
In the past month, just in my circle:
A friend’s partner was diagnosed with breast cancer.
A colleague’s young sister has stage 4 cancer.
A close friend’s wife is dying from metastatic cancer.
A beloved author and illustrator dies of metastatic breast cancer.
As someone diagnosed with cancer myself, I feel as if – oddly – nobody in our government has really rung the alarm bell about the cancer. It is a shrug on the health ministry’s agenda, regulated to a special agency for special treatment. But collateral from cancer litters the entire health system. In emergency departments, family doctors’ offices, rehab clinics and mental health professionals’ couches. Cancer is not just a cancer agency problem. People with cancer are everywhere.
The thing is, cancer isn’t even that special. It will eventually haunt one in two Canadians. It isn’t only a disease that we will all get if we grow old. Young people are being diagnosed with cancer. There is never an ideal age to get cancer.
Cancer is something nobody wants to talk about, including the government. You can empty a room by announcing a cancer diagnosis. Having cancer is an efficient way to painfully weed out unsupportive friends and family. Many people run for the hills when you have cancer. The thing is, cancer touches all of us. It is an awfully big elephant in the room.
The response to feeling uncomfortable about cancer is patient blaming. This happens with oncology professionals, government bureaucrats and researchers alike. ‘Friends’ wade in too, saying in a backhanded way: “Well maybe now you will adopt a healthier lifestyle.” That’s their measuring stick. Like my lifestyle wasn’t healthy and that’s why I got cancer. So what if it wasn’t? What if it was?
This tired old patient responsibility mantra is trotted out, without recognizing that sometimes shitty things happen to people. It is easier to blame us than look at the other reasons for cancer.
Our environments. Toxins. The food we all eat. The air we all breathe.
Alas, we don’t know how cancer actually works because our government’s epidemiology departments are mum on the reasons we get cancer. There’s a fancy shiny cancer research building across the street from the downtrodden patient cancer treatment building in my city. But nobody from there once asked me where I grew up or even about my ‘lifestyle’ when I showed up after my diagnosis. I didn’t even have an extensive medical history taken by anybody. I was merely put on a conveyer belt of treatment. I was sent home a few months later and told: Put this behind you. Get back to normal.
But I can’t put it behind me. I can’t get back to normal. People all around me are dying of cancer. Early stage cancer can come back with a vengeance with late stage cancer – metastatic, terminal, Stage IV. Some people skip early stage all together and are diagnosed with Stage IV. Collectively, we turn our heads away from these people. I live in daily fear that my breast cancer has come back, migrated to my bones or my brain. Every pain in my hips or ache in my head reminds me about the thing I’m supposed to forget.
But if I say: I grew up downwind from the oil and gas refineries and I got cancer at age 48, I’m scoffed at as being a quack. Or I had a close family member who worked at the refineries and has had two types of cancer, there are more shrugs and eye-rolling. Don’t you know that cancer is all your fault?
Or what of the people of Fort Chipewyan, downstream from the oilsands, who got cancer, lots of it, rare kinds of cancer? And while this report has quickly become discounted and buried by the news outlets, even having a slight increase in cancer rates means that people are suffering and dying. And is even having a normal cancer rate okay? How has this been accepted in our world? Is cancer just inevitable?
Eventually cancer catches up to everyone. We get cancer. A loved one is diagnosed cancer. My friends’ loved ones die of cancer. It should not be dismissed. Yes, it is sometimes treatable. But it is also causing a great amount of suffering in the meantime. And cancer can kill us, my friends. Even pink, fluffy breast cancer.
If cancer was like SARS or H1N1, there would be a public health emergency. But as long as we blame patients for their own cancer, and governments skirt responsibility for looking into the environmental reasons for cancer, cancer will just be a shrug. ‘Oh well, you should have eaten better and exercised more,’ they say. And simply blaming us is a dying shame.
My phone rang a few weeks ago. I looked at the number and it was the cancer hospital. My stomach lurched into my throat and I picked up the phone. It was an unnamed booking clerk, calling to schedule me back for more diagnostic testing, a response to the report from my recent mammogram.
You and I know this is never good, but she couldn’t tell me why I was being called back. If you don’t tell me why, I’m going to presume the worst. Had they picked up that my cancer had spread?
Yes this is how me, a person who had cancer thinks when I get phone calls from the cancer hospital. I couldn’t get any answers, so I scheduled the tests and put down the phone in a cold sweat.
I was thankful when my family doctor called me a week later. She had just received a copy of the report from my previous scan and read the report to me over the phone. I was being called back in because of two ‘suspicious spots’ on what I call my good breast – the one that didn’t have cancer in it. Now at least I knew. I settled down a bit. ‘Suspicious spots’ aren’t great but they don’t mean that I’m automatically going to die.
I absolutely benefitted from having that knowledge from my family doctor of WHY I had been called for more diagnostics. But a booking clerk won’t tell you the why. And not everybody has such a thorough and thoughtful family doctor as I do, who would take the time to call me to read me my report. As I’ve said before, good health care in Canada shouldn’t be hinged on good luck.
Here are my wishes:
Wish #1a: I can access copy of my own damn diagnostic imaging report.
OR if that’s too pie in the sky:
Wish #1b: When you call patients back for additional testing, have someone call who can actually tell you why you’ve been called back.
Wish #1c: Speed up the time it takes to get the report from the cancer hospital to my family doctor. In this case, it took TEN DAYS. I could have walked it over faster. (It is a 48 minute walk from the cancer hospital to my family doctor’s clinic. I Google-mapped it).
Now, even armed with knowledge of why I was called back, I waited three weeks immersed in scanxiety. The tests were scheduled for a Monday afternoon. My husband and I searched for someone to pick up our son from school that day but came up empty. So my husband had to leave work early to pick him up instead. And I had to go to the cancer hospital alone. As pathetic as it sounds, with no other family support in town, I often go to appointments alone. It sounds sad because it is sad.
The whole afternoon deteriorated fast. I went for one test, a special mammogram. Then I went for an ultrasound. The ultrasound tech was pleasant enough, but she disappeared for a long period of time and I sat in the dark and looked at my images on the ultrasound machine. Two of the images had big orange writing on them that said: areas of concern.
Finally the radiologist came in. It isn’t good when your radiologist redoes your ultrasound. He then sent me back for more mammogram images. He did take the time to explain to me what they had found (micro-calcifications, could be nothing, could be something they monitor, could be a sign of more cancer).
At this point in the afternoon, I was emotionally exhausted. My boobs were tired of being squished and manipulated. I was in the room alone and was desperately trying to remember what the radiologist told me as he was telling me it. I couldn’t reach my purse to grab my little notebook to write things down. I was sitting there half-dressed in a gown trying to stay calm. I kept repeating what he said so I could remember.
He ended by saying that someone would call me by the end of the week after he’d looked at all my scans to decide if I needed a biopsy or not. I did not ask him to call me personally either way. I should have asked him to call me personally either way. But I didn’t. I was out of energy and traumatized. In my head, as he was talking to me, I was also remembering how my cancer had been diagnosed the first time two years ago. It felt like Groundhog Day. I thought – unreasonably + oddly – if I am here much longer, I am going to hit rush hour traffic on the way home.
I honestly had run out of any patient advocacy skills that I might have brought with me to the appointment. My patient advocacy well was bone-dry.
I waited all last week for the cancer hospital to call me. I carried my phone on me everywhere and constantly checked that the ringer was on. Nobody called. No news is good news, right?
If you have seen Greg’s Wings, you know that no news is not necessarily good news. Someone could have forgotten to call me. The request to call me could have been lost. At this point, I’m counting on my family doctor to call me instead in a week, when she finally gets the report.
(Note: I am not writing this to solicit medical advice or for anybody to tell me I should have been a better advocate. I KNOW I should have spoken up. But I didn’t. If you are a health professional, I ask you to think: what can I personally do to change this process?).
My final wish:
Wish #2: Call patients back with results no matter what. Particularly if it concerns a biopsy or cancer. Have someone call who can explain the results and answer any questions.
Because not calling me back does not help my precarious mental health. I’ve thought of nothing else the past week. Not calling me back does not give me closure so I can move on with my life. It is just a big gaping unresolved hole. I just need someone to call me to say: we’ve decided that you don’t need a biopsy right now. We are instead going to monitor this in six months. Then I can calm down.
Because once you’ve had cancer, getting cancer again is not a distant concept. It is something that can happen because it has already happened. It is cruel and unusual punishment to leave us patients hanging.
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.
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.
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.
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.