The Down Syndrome Rocks Talk, part 1

Slide5

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.

5 thoughts on “The Down Syndrome Rocks Talk, part 1

  1. Amy says:

    Great post, not only for how you are gently nudging your son to find his own voice, and empowering him, but also as a parent, how we all eventually have to let go, and let our children take the reins.

  2. Anne Corrie says:

    Wow, great post. And for someone alot like you, its a great reminder for me on my journey with my daughter who happens to have an extra chromosome too.
    We live down the street from Isabel in Squamish. Would love to meet you and Aaron if you ever come up this way.

    Anne

  3. Donna Thomson says:

    Yay, the talk sounds fantastic! Well done for stepping back. As they say in the ABCD movement, forget ‘TO and FOR’ and replace with ‘WITH’. Know the #1 best choice is ‘BY’ – just like you and Aaron!

  4. Oksana Hlyva says:

    Recently, I was privileged to talk about my child and our family to medical students. My goal was to show them that my child is little different from any other child even though she may need flex support and healthcare like any one else. Next time I will ask if i can bring her with me. Learning about each other should start early.

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