Open Arms

I’ve had another one of those experiences that are so complicated that it’s not easily digesting itself into a post. But it was too good not to share:

There are a lot of spectrums in the special needs world. One of them is the spectrum of embracing folks with disabilities in one’s everyday community. The spectrum looks a little like this, from one end to the other:

  • Rejection: “You’re more than welcome to join us if you meet the following requirement: you are exactly like us.”
  • Tolerance: “We’ll put up with you because you could sue us if we don’t.”
  • Acceptance: “Since you asked, sure, you can join our game.”
  • Embracing: “Great! You saw our invitation. We’re glad you came. Tell us what you need to make this work.”

…and many nuances in between.

I don’t expect folks to embrace my child with a disability all the time. I don’t think mainstream folks have had enough chance to rub elbows with folks with disabilities yet to have the necessary appreciation for difference that’s required for get how wonderful it is.

Acceptance would be nice, but the problem is that after experiencing mostly rejection and tolerance (usually stemming from ignorance and inexperience rather than malice), I’ve gotten tired of the necessary wheedling and cajoling required to gain admission. But then, if folks with disabilities stay home, others don’t get experience with them, and the cycle of ignorance and rejection continues…

Thus it was that I found myself completely paralyzed to try to enroll my son in an informal, impromptu, neighborhood soccer “clinic” last weekend. After last winter’s adaptive soccer debacle in which two dozen kids were sent out of the gym so my son could play soccer with a dozen middle-aged men with disabilities, I had set my sites on a more inclusive rather than separate setting. But my fear of not being accepted was pretty huge.

As the start day approached, I couldn’t bring myself to register officially; I imagined scenarios in which we were turned away, one more vivid than the next. In the end I forced my husband to come with us for the first class, to register on the spot; if we were going to be rejected, we’d all be rejected together. I don’t know how I had become so sensitive, but there it was.

So imagine my surprise: we show up on the field and walk up to the coach in my most submissive, hat-in-hand approach. I begin to launch into my “I was just wondering if it would be ok if…” speech when the coach smiles, grabs my son’s hand, and says with total friendliness, “Sure, no problem. Of course he can join us. See you at 4.”

It turns out that his daughter has special needs too, and she was in my son’s class when he still attending public school in our town. I guess success must breed success, as the old adage says, or I wanted to test my luck, because I took this as a sign to make a bold move.

For months I’d been dreaming about getting my son into the after-school program at my daughter’s school a couple of days a week. It would be a great socialization experience for him. (Why is it that special needs kids “have socialization experiences” but other kids “make friends”? A post for another day.)

Every time I thought about the idea, I imagined a reason it wouldn’t work. Legal reasons mostly, but really it was fear of rejection, plain and simple. Bringing it up with other advocates, friends and colleagues, they shot the reasons down, one by one. The clincher came when my two co-workers lovingly baited me: What have you got to lose? Stop being so afraid.

I left the office and headed to my daughter’s school. I mustered up the courage to swing by the after-school office and talk to the young man who administers the program at our site. I coolly mentioned that I’d be submitting an application for my son to join after-school a couple of afternoons a week next fall. I was about to launch into a speech assuring him that my son’s PCA would be on hand, he interrupted me.  His eyes lit up. “I often wondered when your son would join us. I was even thinking about how we could get it to work. When you submit the paperwork to the main office, please tell them that I’m totally on board. This is important for our program. I want ours to be the kind of place that every kid can attend.”

To those out there who have experienced rejection, grit your teeth through tolerance, wheedled and cajoled, carried the burden of making things work, I say: thank you. Because you were there, I am here. And I’m really, really grateful.

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No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

It’s complicated

I am having a really hard time figuring out what to make of my son’s soccer practice this past Saturday. Can you help me figure it out?

As part of our town’s recreation department’s efforts to create recreation opportunities for kids with special needs, they’ve started an adaptive soccer league. High school varsity and JV kids buddy up with kids with special needs to play casually; it’s a low-pressure hour of fun. As part of creating local friendships for my son, who now travels 2o miles each day outside of town to attend school, I registered him for the program in the hopes he’d meet some local kids.

This past Saturday was our second practice. When we arrived, a winter soccer clinic for typically developing school-aged kids was wrapping up; the kids were cute and would have been wonderful buddies for my son, who is nine and has a developmental delay, but they were rushed out of the gym by their coach, who yelled at them to get off the court to make room for our group.

My son’s program started. The participants included my son, a seven-year-old boy from a different town, and about eight adult men who were well over 40, probably from a day program or a group home. I asked the coach who the charming men were and found out they had just come for a one-time visit but were being invited back for the rest of the season. Apparently, as hard as it is to find recreation activities for kids with special needs, it is even hard to find them for adults with special needs.

So. What to think? Am I happy that we are spearheading an inter-generational, regional group that provides opportunities for all kinds of folks with developmental disability? Or does it break my heart that there are no prospective chronological peer friends here?

A little of both, I guess.

Am I proud of our soccer coach for being flexible and seeing an opportunity to let the older men stay on? Am I disappointed that the coach of the typical kids (who is also the manager of the city’s rec department) couldn’t see the benefit of letting the kids from his session stay?

Again, a little of both.

Would a parent of typical children think it’s appropriate for their nine-year-old child play soccer with a group of middle-aged men? Would I have let my daughter stay? Do I have the energy to do something about this?

It’s complicated.