two images of a woman next to a girl. the girl has down syndrome, the woman is wearing hearing aids. both are smiling. the woman is white and the girl is bi-racial, white and vietnamese.

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This is not an essay about what I’ve learned about Down syndrome or my child with Down syndrome. This is an essay about what I’m learning about myself as I raise my child who has Down syndrome.

When my child (now a teen) with Down syndrome was born, I knew very little about Down syndrome. Like many others, I was aware of the stereotypes surrounding people with Down syndrome. Stereotypes like “they are always happy!”, stereotypes about “those angels!” and of course, stereotypes surrounding being either physically or cognitively slow.

Articles found online assured me that by parenting a child with Down syndrome, I was going to learn to “go slower” and maybe even “love and laugh more,” with my happy angel. All of this filled me with fear and set me on edge. For one, I have never wanted to go slower, and for another, frothy, de-humanizing stereotypes make me gag.

I need not have worried.

What I’ve learned so far in raising my teen with Down syndrome has nothing to do with learning to go slower or diving into angelic bubbliness.

What I’ve learned is that othering is a major problem in our culture.

Othering

I’ve learned that we do this thing in Western US American Culture whereby we take a group of people – say, with Down syndrome, but could just as easily be another culture, race or disability – and we say, ‘oh they are really different from us.’ In our thoughts, our words, or feelings about them, we untangle threads of human connection that bind us with others.

We consistently distance and make them the ‘other.’ Them, they, those people.

We don’t see people that we’ve othered as the same as us. We might celebrate some of their victories or smile with them, but we’re doing a whole lot of it from that vantage point of US celebrating THEM, because THEY are THEM and not one of US and they are an OTHER.

This is not from a malicious or mean place. People don’t intend to do this. But culture, stereotypes and prejudices are strong beasts to overcome, and othering someone is easy to do.

Courage

As I see it, when we have a child with a disability, our child opens a portal to a world that gives us a broader and more visible opportunity to be – to grow into – our most authentic selves.  

Our children do not give us courage; our children provide us with more opportunities to develop our courage, because we are placed in more situations in which we can make the choice to be courageous. 

Compassion and Mindfulness

The original meaning of the word “courage” being coer heart, from Latin cor —I think it’s fitting that through my heart learning to have courage, I’ve learned to have some compassion. I’m not talking about compassion for people with intellectual disabilities. I’m talking about compassion for neurotypical, non-disabled people. I’ve learned to have more compassion for everyone else.

I see that people are often trying their best. It’s not an excuse and I’m not condoning the othering, illegal behavior, stereotypes, prejudice, ableism and exclusion that happens on the regular. Rather, I’m just able to see at this point that I don’t have to get angry about everything. In fact, beyond some of the energetic momentum that anger can provide, it’s really not all that useful for me. It hinders more than it helps.

This leads me to mindfulness, both the mindfulness of being in the present moment, and mindfulness of staying in my own lane in life. I’m learning I need to take a page from my daughter’s expert skillset. She isn’t caught up in tangles of the past or visions of the future; she’s got her feet firmly planted in the soil of today. If I learn from that, I find myself smack-dab in the center of mindfulness, which lets me breathe easier.

The mindfulness of staying in my own lane is a reminder that my daughter and I have different life lanes. She’s going to the future. I’m the stable bow that will help her fly. Her life is not mine. I need to stay in my lane.

Back to the Life Learning and Down syndrome

I have a tendency to overthink everything. I’m the kind of person that needs my life to point to meaning and learning and growth. But this isn’t true for everyone and that’s part of the beauty of the world: we don’t all have to be like each other.

14 years into this experience, I’m learning that othering is a huge issue, that the opportunity to practice the virtue of courage is amply provided while raising an individual with Down syndrome. I’m learning mindfulness and compassion, almost as bi-products of practicing courage. Since I still have a ways to go before my teen is fully fledged and flying on her own, I expect that I still have a lot to learn. And I welcome it.

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