Updated: Nov 16
This essay offers a sneak peek into the very last module in my Course Content called Let’s Talk About Disability. This is a special module that will be exclusively included in the (free!) eBook version of all my Course Content, which will be released late in 2020. Sign up here for notice of when the eBook is released.
I hesitate to write this essay. I have a 17-year-old son who has Down syndrome, but I do not have Down syndrome myself. This is an important distinction. I have often confused the two. I am not an expert on disability. I am only the expert of my own experience being Aaron’s mom.
When Aaron was younger, I referred to his doctor as ‘our’ pediatrician. I often spoke on his behalf. It has taken me a long time to start to unwind Aaron’s experience from my own experience. But unwind it I must.
My epiphany has been that I have an experience being his mother. That experience is valid and important. But my experience is not the same as Aaron’s experience. I must make sure my story does not overshadow his story anywhere, including in school or health care settings.
When Aaron was little, I did most of the communicating for him. When he became a teenager, it was time for me, his mom, to stop hovering. To step away. It became my job to stop speaking for him, and instead to create opportunities for Aaron to share his own story and opinions himself - and not through his mother.
This is the natural progression of all teenagers. They pull away to differentiate themselves from their parents. With all three of my children, this process has been both heartbreaking yet totally natural.
This essay shares my wisdom for health professionals about working with Aaron. I don’t assume that these hints are relevant for all disabled people. Some of these strategies might apply to working with patients who have Down syndrome or other intellectual disabilities. It is crucial to remember that all people are different, even if they share the same diagnosis. The secret is to ask people what matters to them, what they prefer, because the answer to the question, “what do patients want?” is always “it depends.”
Here are 7 Aaron-specific tips:
1. Always Address Aaron First
There have been many times when I have been in a clinic room with Aaron and the specialist talks to me first. It is always best practice to address the patient first. I think sometimes there is hesitation to talk to Aaron because people are afraid that he can’t talk (he can) or they won’t be able to understand him (that’s a possibility). No worries! Aaron is used to this – he will repeat himself if you ask him to, or I will not leave you hanging if you can’t comprehend what he’s trying to say. If it is obvious you can’t understand each other, I can step in to translate. If people aren't verbal, this advice is the same: always address the patient first. You never know how much someone might understand you, and addressing someone directly is a sign of respect.
2. Connection is Key
Once Aaron spoke to a group of medical students. He happened to be wearing an Edmonton Oilers’ t-shirt. I’ll never forget the efforts of some of the students afterwards to connect with Aaron by commenting on his t-shirt and taking the time to talk about hockey with him.
Chit chat matters! It helps establish human connection. Good health professionals find a way to be personal with all patients. This can be as simple as commenting about the weather, asking how school is going or finding out someone’s interests. This works for everybody, disabled or not. Plus, any patient will be more cooperative (if compliance is something you are aiming for) if they trust and like their clinicians.
A bonus tip: Health care tends to be very serious. Aaron, the same as other kids, responds well to humour. Do not be afraid to use humour to break the ice.
3. Give the Guy Some Choice
Most of Aaron’s life, people have told him what to do. Educational Assistants, teachers, therapists, and youth workers. (And yes parents). He has little agency in his life. Giving him choice, even in simple things (do you want the green gown or the blue one? Do you want to be weighed or measured first?) helps him maintain a sense of control in his life.
4. Communication is Everything
Aaron takes everything in, but it takes time to process words. If you are giving him directions, give him one direction at a time. No need to speak too slowly (see #6) but don’t speak too quickly. Give Aaron a few seconds in-between directions. If you ask him a question, wait a full ten seconds for an answer. Someone wise taught me to count to ten by tapping my tongue on the roof of my mouth while I’m waiting.
Aaron is very good at picking up on emotions. Try your best to be fully in the moment and not appear rushed, even if you are rushed. Take a breath to calm yourself before you walk into the room. Being calm will help him be calm too.
5. Ensuring Dignity
We have established a habit with Aaron’s doctor. I first come into the appointment with Aaron, to explain what brought us there (in my opinion). Then I leave the room and Aaron has time to talk to his doctor alone. I mean, what teenager wants their mother in the clinic room with them? I’m very embarrassing to begin with AND this gives Aaron a chance to ask questions on his own that he might not when his mother is sitting there. It helps him maintain dignity.
6. Don’t Baby Him
People who are disabled can sometimes be infantilized and treated like small children. One of the ways I’ve seen this done in health care is that people call Aaron ‘Buddy.’ I know this nickname is meant as a term of endearment, but I don’t find nicknames respectful. (Same with ‘dear’ or ‘sweetie’ for older people). Plus, when Aaron was younger, calling him Buddy truly confused him. (He would look around, wondering where this Buddy person was). Using proper names instantly solves this problem.
7. Don’t Forget About the Caregiver.
I have contradicted my advice in #1, but caregivers can help too. I know Aaron really well. I’m happy to offer up helpful advice about how to work with him. For instance, when he was little, I knew from experience that his right arm was easier to get blood out of than his left. I’d share that with the lab techs and this made the traumatic experience a whole lot better.
What Aaron Wants You To Know
Most importantly, I asked Aaron what he wanted you - as future nurses, doctors and other people who work in hospitals - to know. He said:
1. Treat me with respect.
2. Don’t use the ‘R’ word.
If you remember nothing else, please remember Aaron's words. All the components of patient centred care (respect, dignity, information sharing and partnership) matter just as much to this young man with Down syndrome as they do to every other patient you will meet.
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