I’m dating a woman whose son has Down Syndrome. I’ve always been uncomfortable around people with disabilities because I never know how to act. What am I supposed to do or what am I supposed to say when I’m with him?
You’ve struck upon a subject near and dear to my heart. In fact one of the most surprising and welcome compliments I have ever received was immediately after I was spontaneously asked a somewhat nonsense question by stranger with Down Syndrome.
The compliment focused on the fact that I had been very nice and fully attentive to a person that a lot of people might consider awkward. I prefer to rewrite that in my head to mean that I see all people equally. I point that out because that distinction is important to what I will attempt to impart.
First off, don’t feel badly that you feel awkward. That’s just you being human and who can blame you for that? It’s also why funerals are awkward, and karaoke is awkward, and even seemingly nice things like hiring someone can be very awkward. Anything we don’t do often will feel strange to us.
But funerals don’t feel strange to funeral directors. And people who regularly attend karaoke don’t feel weird going up to sing. And Human Resources professionals who interview people for a living don’t feel strange telling someone they got the job.
It’s only when we’re in a largely unknown context that we get the sensation for strangeness. That feeling existing within you isn’t because her son has Down Syndrome, it’s because you have no experience on which to base your behaviour.
The vast majority of what we do is mimicked. You walk like one of your parents, you talk like one of them, you hold the phone like someone, etc. etc. etc. But if you didn’t see something modelled then you have no idea what to do.
You’re floating. You have an ungrounded, uncertain sensation that leaves you naturally feeling uncomfortable. But you’ll have your girlfriend’s experience to build off of. She’s obviously very comfortable with him so you’ll learn some things from her. And through direct experience you will also develop your own ways of meeting the boy on terms that work for him.
Just don’t think something’s wrong because you feel strange at first. That’s entirely normal when we’re learning to face any kind of new situation. It’s just the feeling that goes with us sending out a request for an answer and our brain sending nothing back. The chemical result of that null response generates the sensation of discomfort.
Remember, this is no way to be with her son. There isn’t some special language to use, although granted you will learn strategies that may help deal with specific circumstances. But aside from those all you really need to do is be fully present with him.
Don’t have thoughts about “oh I wonder if he wants this,” or “I wonder if he’s thinking that.” Just listen to him and respond as yourself. Be with him fully. Offer him all of you, without a restricting or limiting thought.
You wrote this and asked the question, you’re clearly a caring, responsible person. After that all we have to do is be present. Listen as though he is a guru and you will know what to do. And if you don’t know, then do nothing. Because there is still a lot going on when we’re quiet and spiritually awake with someone.
Don’t over-think it. Don’t start spilling anxious chemistry out because you’re telling yourself that you should be able to predict, prepare for, or mitigate anything the child does. Even his mother will lose control sometimes. Just relax into it.
Stop the racing, worried thoughts and breathe. Listen and respond. Trust me, you’ll get good at it sooner than you think. And for all we know, he could end up being more important to who you become than even she will.
Either way, you have a relationship with her, but you also have one with him. So just live it authentically. Be yourself with him as he is himself with you. You’ll both be fine. Everything else is just thinking.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.