Playing out on the street

The two little girls next door ran towards me as I watched my son ride by them on his truck out on the street last night. Nearly out of breath they asked, “What kind of sickness does he have?”

A searing red heat flared up in me. I never know exactly what to say in these situations, but I do know enough not to answer right away, to take at least one deep breath while the adrenalin rush subsides. When I get in full Mamma Bear mode I want to lash out at these girls who I had never even met, but from experience some voice in my brain reminded me that while tempting, shaming them would serve no purpose than to leave me feeling like a jerk later on.

After a moment, I said, “Well, he doesn’t have an illness, but he does have a syndrome.” (Not my best response, but they have been way, way worse, let me tell you.)

They asked what that meant. Shifting gears away from the genetics lecture, I told them that just because someone is different doesn’t mean that they’re sick. And besides, we’re all different in some way. “But we tried to talk to him. We asked him what was wrong with him…” (seriously, doesn’t anyone teach their kids manners anymore?) “and we could hardly understand what he said. He just talked about the bus coming.”

“Alright, buddy!” I thought to myself. You know you’re not a typical mom when you’re psyched that someone can understand your child, even if it’s his response to a conversation he had with someone else three minutes earlier. And then my heart broke realizing that he was really trying to have a conversation with them but that they couldn’t connect.

We hobbled along through the rest of the conversation, me pointing out that we just moved here from the US and that my son, like the rest of us, was still mixing Swedish and English words, tossing in that weak platitude about everyone being different once more like a Hail Mary pass, before the girls had had enough and returned to their part of the street.

The fire that flares up isn’t directed at these girls. Possibly a little bit at their parents, I’m ashamed to say. But mostly at the reality that my son is growing up different in a world for which differences of many kinds means “sickness.” Where different means “I don’t have to see you as a person.”

I’m not suggesting we shouldn’t notice difference, that we shouldn’t be curious about it, try to understand it, or even to appreciate it. That’s not diversity, that’s denial. But what if we could look at others and notice the similarities first? “Here is a person,” we would say. “She has loved like me, bled like me, struggled like me, laughed like me. And by the way, her hair is curlier than mine.”

The fire isn’t just an anger. It’s a sadness that my son is growing up in a world in which the main question it is asking him is “What is wrong with you?”

What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have? If last night is any indication, we will be waiting a long time. Is there any way to speed this along? Where do we find the energy and courage to keep at it, when it would be so easier to go inside and never come out to play again?


Fun houses and bumper cars

My family took a break from the chaos of our trans-continental move adventure this past weekend and headed to an amusement park in our new home town of Stockholm. Right inside the gates, our niece, an experienced park visitor, insisted we try out the park’s fun house.

funhouseA classic vintage fun house, this one was delightfully creepy, in that old school clown-and-carny sort of way. It played tricks on my senses and despite the domestic setting—it was meant to be a house, after all—I was quickly disoriented by the awkward uneven staircases, distorting mirrors, wobbly floors, rooms pitched at unbelievable angles, optically confusing paint job, psychedelic sounds and what felt like miles of switch-back turning curves. The closest experience I have outside the amusement park is that strange feeling of walking up an escalator that isn’t moving—times 100.

My brain tried to find sensory equilibrium but simply couldn’t. By the end, I felt tipsy and  and dizzy, stumbling along to keep up with the kids until we were ejected from the building on a piece of carpet down a long slide. We giggled with relief as we tumbled into the day light.

For a brief moment in the house it struck me that being in the fun house was so like my experience of parenting a child with special needs, especially in a new country. Looking from the outside in, the recognizable elements are there: the kids, a school, a pediatrician, the toys, the hopes, the dreams. But take a step in and the floor starts to shake.

With my typically developing daughter, things are for the most part as they seem. She started school within 72 hours of our arrival, making friends easily and requiring surprisingly little support. (Her response to my query of how the first day of school was: “Fine.”)

But with my son, who has complex special needs, everyday activities often provide a distorted backdrop for a confusing and vertigo-inducing experience. Two weeks after we landed, he was still sitting at home, starting school at a snail’s pace after many bureaucratic obstacles had been overcome. We spent hours on the phone and in doctor’s appointments trying to get a simple medication refill, but were still empty-handed as we reached the end of the bottle.

As my daughter’s mom I usually feel pretty confident, but parenting my son I’m often confused, disoriented and running to stay upright, just like in the fun house.

The day went on passed and we hit the roller coaster, the carousel and old-time cars. Eventually we found the bumper cars, my son’s favorite. As we got our seat belts on, the tough-looking guy who runs the ride approached us and asked my son, “How many times do you want to ride?” Confused, I answered on his behalf what I believed would be my son’s truth. “As many times as we can.” The mom in me wondered why he was making small talk with us. Sensing my bewilderment, the man explained, “When kids with disabilities ride on my ride, I like to let them take a few extra turns. When the ride ends, don’t leave.” He looked at us both. “Have fun.” And that was that.

More pitching, turning, whiplash, smiles and nausea ensued. This amusement park life of mine definitely isn’t what it seems. That’s not always a bad thing.