Clear Boundaries for Healthy Relationships in the School Setting
By Andrea Lee with Glen Hoos
Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #20: The Back to School Issue). Click here to download the full magazine.
School is a communal activity. Throughout their school career, most students interact and build relationships with hundreds of people: classmates, teachers, EA’s, librarians, school administrators, bus drivers, and more.
For a student with Down syndrome, navigating this vast social network is complex. It is also a fertile learning opportunity through which they will develop core relational skills that they’ll practice for the rest of their lives. By helping students understand foundational concepts like touch, consent, and boundaries, we equip them for a lifetime of rewarding relationships.
Touch
As mammals, the sensation of touch is good for all of us. Touch builds social connections and conveys acceptance. When done right, touch feels good and makes people happy. It can lower stress, help your immune system, calm your heart rate, and lower blood pressure.
Consider a hug: It involves deep pressure over large parts of the body, including the shoulders, back, and arms. This can help calm the nervous system and organize the sensory system. And best of all, hugs are easy to ask for without much expressive language. All you’ve got to do is put your arms out, lean in, and make people happy!
On the flipside, when you are not getting enough touch, it can have significant negative consequences. It can cause stress, anxiety, depression, and sleep issues. During COVID-19 lockdowns, many of us become familiar with touch starvation. Many of my colleagues, friends, and family shared with me that when they couldn’t see anybody, they were surprised by how much they missed the physical sensation of touching and being touched. They couldn’t remember the last time they touched somebody, even just a friendly high five, and it really impacted their mental health. So, we want to make sure that our students with Down syndrome are getting the touch they need (keeping in mind that everyone requires different amounts and types of touch).
Typically, adolescents as a group are at risk of touch starvation. Smaller children generally get lots of physical contact as they play, wrestle, cuddle, and hug family and friends. But often as people go through puberty, suddenly nobody is touching them – at the very age when they most need positive affirmation.
Now, let’s think about why people with Down syndrome might be extra susceptible to touch starvation. They may have fewer friends and social opportunities. Communication may be more difficult, so they may have trouble asking for what they need. They may be more likely to be single due to a lack of opportunity or relationship education.
I teach my students about different types of touch, and we talk about them in detail, with visual aids. There are many ways to touch somebody, and most of them are not romantic or sexual in nature. I include smiles and waves even though they’re not technically forms of touch; they are part of a natural sequence where you may smile at someone or wave at them, and as you get to know them better you might progress to high fives, fist bumps, handshakes, or hugs.
This leads us to an extremely crucial concept: consent.
Consent
Consent is a foundational principle that needs to be taught and practiced early and often. It is not reserved for sexual acts; bodily autonomy is absolute and applicable to all forms of touch. I have the right to my body and I make the choices about my body.
Sometimes I ask my students, “Have you ever had an itchy nose?” When they say yes, I follow up with, “Who do you have to ask before you scratch it?”
They may answer, “My mom,” or, “My doctor.” But it’s a trick question. The answer is: nobody! You do not have to ask anybody for permission to scratch your nose. You are the boss of your body, and if you are itchy, you can scratch it.
And then we make an important connection: other people have control over their own bodies, too. This is the concept of individual agency. Yes, you’re the boss of your body, but you are not the boss of anybody else’s body. They get to make their own choices. Just like you, they get to choose who they touch and who they do not touch. It might be you, and it might not be you.
These lessons can begin at the earliest ages. I saw a YouTube video of a teacher welcoming her kindergarten students each morning. She posted a greeting menu outside the classroom, and the kids get to pick what kind of greeting they want, whether that’s a fist bump, a hug, a silly dance, or nothing at all.
Teaching self-advocacy is so important for folks with Down syndrome. I can say no, and I can tell someone when I don’t like something. I find so many of my students with Down syndrome are people pleasers. There’s a lot of built-in compliance because of all the specialists they’ve seen through the years, where they are often rewarded for being compliant and following directions. That’s an important skill in some situations, but they also need the confidence and ability to say no when something is hurting them, making them uncomfortable, or they just don’t want to do it. It’s a matter of safety.
We need to give kids multiple ways to say no. It can be verbal or spoken through an AAC device. It can also be conveyed non-verbally, by holding up their hands in a ‘stop’ gesture, looking away, or even walking away. These are all valid ways of saying no.
When I teach consent, I say that consent is an agreement. Consent means saying yes. We do not want force compliance. We want bodily autonomy for everyone. So, we want people to be saying yes, and we want them to feel okay about saying no.
What does this look like in practice? With my students, it looks like this: you will ask, you will wait, and then you can get your hug. It can be hard with younger children, where they’re just so cute and they want to hug everybody. But I’ll still make them pause to show them that I had to agree to this hug, and the choice to agree or not agree is up to me. And then they get the hug.
Here are some useful rules for giving consent:
- I am the boss of my body: what I say goes
- I can change my mind at any time: I can stop whenever I want
- I can say no one time and yes the next time, I can say yes one time and no the next time
- I can say no to one person and yes to another person
There are also rules for asking for consent:
- Both people have to say yes
- If somebody says no, I can ask for something different one time: no pestering or harassing
- Consent can be given verbally or non-verbally (eg. through eye contact, smiling, nodding, etc.)
- Consent must be informed and enthusiastic
With my group classes for students with Down syndrome, we start every class by practicing consent. We use class consent menus which include things that are situationally appropriate for our classroom, for being in public, for classmates and friends, and for dating relationships. We take turns asking each other questions, and it is a really fun relationship building activity. They might say to me, “Andrea, I want to dance.” And I’m like, “Oh, with who?” “With the whole class. I just want a dance party.” And then I have to consent to that as the teacher running the class. Sometimes I’ll say yes, and sometimes I’ll say no. It’s very empowering to give people the chance to ask for what they want. If they can’t have what they want, it’s a good learning experience. It is disappointing, but maybe they’ll get something next time.
Boundaries
I mentioned that I have different consent menus for different relationships and environments. This is tied into the notion of boundaries. Boundaries are partially defined by the type of relationship that two people have with one another.
For example, I ask my students, what kinds of things do they see boyfriends and girlfriends doing, and what do they see people doing with their paid helpers (eg. teachers, EA’s, and caregivers)? Some types of touch may be appropriate for romantic partners, while other types of touch may be appropriate with a paid helper. And, confusingly, some types of touch may be appropriate for both types of relationships, but they convey different meanings depending on the context.
With paid helpers, there are various kinds of activities, some of which involve touch, such as hand-holding. But holding hands would be for practical purposes, such as aiding someone’s balance or safely crossing the street. It is not romantic, like it is when a couple holds hands. You want to make it very clear that as a paid helper, it is your job to help your students. You are not their friend (at least, not in the same sense as those who have social relationships with them), and you are certainly not a romantic partner or prospect. Students with Down syndrome may need help understanding these distinctions and respecting the boundaries.
I use Terri Couwenhoven’s People in My Life model, similar to the Circles of Intimacy program, from her book Teaching Children with Down Syndrome About Their Bodies, Boundaries and Sexuality. You begin with the student in the centre, and the circles around them are the relationships they have, starting with their closest family members, then going out to their friends, their acquaintances, and so on. This tool helps the individual define different relationships they can have including family, romantic partners, friends, acquaintances, paid helpers, community helpers, and strangers.
Terri also has a friendship checklist that you can adapt and use to help the student determine who in their life falls into each category. This can be particularly tricky in this age of social media, where it’s easy for some students to misunderstand a kind comment from a stranger or celebrity on Instagram as a sign of friendship.
From there, you can discuss the boundaries that are appropriate for those in each circle. You might have the Hug Circle and the High Five/Handshake Circle, for example. This may be different depending on your culture, and your level of comfort with the people in your life. Personally, I hug my friends and give them high fives, but I know some people who give kisses on the cheek or hold hands with their friends. Different people have different boundaries, and that’s okay.
For paid helpers, there are additional considerations. Does your school or workplace have a child code of conduct? If so, what boundaries do they mandate? How often are you supposed to be letting students sit in your lap, and until what age? When is it okay to hold hands? How many hugs should you be giving? Should you have the same boundaries with students who have Down syndrome as you do for other students, or is there room for some flexibility?
Finally, what happens if someone crosses boundaries? I like using the language “expected and unexpected” versus “good and bad” or “appropriate and inappropriate.” It leaves out the judgment. I explain that in this type of relationship, in this scenario, or in this place, that was unexpected. There’s a program called Cool and Not Cool used for teaching students with autism spectrum disorder which follows similar principles.
For somebody who crosses boundaries a lot, contracts work well. You can come up with the expectations together, and the consequences for breaking those expectations, such as taking a break. This type of collaboration generates more buy-in, which often results in greater success.
Relationship skills are complicated. Each of us spends a lifetime developing them. With the right support, students with Down syndrome can build meaningful, mutually respectful relationships with others in every circle of their life. And isn’t that what we all want?