In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!

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Secret hand gestures

Yesterday I watched a woman gently coax her adolescent son away from the edge of a meltdown. As they headed toward the exit of the store we were all in, he began waving his arms and grunting “No” in a loud voice. “It’s OK, David,” the woman said quietly, stroking his back. “Take a deep breath. It’s OK.”

I caught myself looking over at the two of them. I marveled at her ability to speak only in a tone of tenderness and compassion, not desperation or nervousness or embarrassment at causing a scene.

It’s in moments like this that I wish there was a secret hand gesture, a high-five or a thumbs up, that would let that other person know: “Hey, I’ve been there. I see you. You’re doing a great job. If you need a hand, let me know.”

If she had looked at me, she probably wouldn’t have seen any of that. She would have seen a stranger staring at her, straining to send off vibes of empathy that probably look a lot like pity. And maybe that would have flustered her and caused her pain. So instead, I ignored her, turning back to the rack of dresses as if they were the most interesting thing in the world.

I know so many times I have seen others look at me and my son, who isn’t on the autism spectrum but who has a number of quirky behaviors that seem to captivate the attention of strangers — when he has an accident that soaks through his pants, talks too loudly at movies (usually perseverating on a word or phrase for what feels like an eternity), or turns eating into a full body experience when we’re at a restaurant.

In those moments, I often wish to simply disappear. I just assume that people don’t understand, that they’re judging my son or my ability to parent.

I have to give a special thanks to the recent post on Rhema’s Hope for not only writing, always full of grace, but for pointing out a short segment on the TV show What Would You Do? that shows the reactions that people have to a family with a child on the spectrum when they go out to eat. (Watch the segment here.)

The reactions of the fellow diners made me reflect that maybe I’ve been underestimating people and that there is no need for a secret sign. Can it be that I’m giving strangers too little credit? And what does my discomfort say about me? Is it possible that it has more to do with me than with them?

Maybe the glares I feel are, in fact, filled with empathy and support. Maybe there’s no need for a secret sign. I’m going to play around with that perspective for a while, and see how it feels.  Much to think about.

I’m really curious to know what other folks do in these situations. How do you feel? Does it keep you from going out? Has the feeling changed? How do you show support for strangers, if at all? Do you have a “secret sign”?

The Birthday Girl Gives Everyone Else a Gift

birthday cake
birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

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.

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.

“Let there be peace, welfare and righteousness”

Martin Luther King leaning on a lectern. Deuts...
Image via Wikipedia

Reflecting on Rev. Martin Luther King, Jr.‘s contribution to peace  thought I’d share a blessing by Hagen Hasselbalch which I found in Earth Prayers. It so beautifully captures the open-armed ambitions of the peace movement inspired by folks like Dr. King: the desire for justice, for access, for respect for each other and the earth.

Let there be peace, welfare and righteousness
in every part of the world.
 
Let confidence and friendship prevail
for the good of east and west
for the good of the needy south
for the good of all humanity.
 
Let the people inspire their leaders
helping them to seek peace by peaceful means
helping them and urging them
to build a better world
a world with a home for everybody
a world with food and work for everybody
a world with spiritual freedom
for everybody.
 
Let those who have the power of money
be motivated by selfless compassion.
Let money become a tool
for the good of humankind.
 
Let those who have power
deal respectfully with the resources of the planet.
Let them respect and maintain
the purity of the air, water, land and subsoil.
Let them co-operate to restore
the ecological soundness of Mother Earth.
 
Let trees grow up by the billions
around the world.
Let green life invade the deserts.
 
Let industry serve humanity
and produce waste that serves nature.
 
Let technology respect
the holiness of Mother Earth.
 
Let those who control the mass media
contribute to create mutual understanding
contribute to create optimism and confidence.
 
Let ordinary people
meet by the millions across the borders.
Let them create a universal network
of love and friendship.
 
Let billions of human beings
co-operate to create a good future
for their children and grandchildren.
 
Let us survive
In peace and harmony with Mother Earth.

Peace.