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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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special needs parenting and tagged , , , , , , , , . Bookmark the permalink.

11 Responses to Open Arms

  1. Debra says:

    Best, most hope-inducing true stories I’ve heard this week. Thank you. And hooray for your family and all the others who get to spend time together at soccer and after school!

  2. Diane Engelstad says:

    Hooray for you and your story (and those other great people you introduced us to)! It’s truly inspiring, and inspiration is what keeps us parents stepping up to the plate, often with trepidation. I hope you and your family have a wonderful summer.

  3. laurimedeiros says:

    I remember when my husband and I “forced the issue” for our (then) 8th grader in a substantially separate classroom to be included in the annual rites of passage on the out-of-state trip to NYC. Boy was that a conversation! She would need a full time one-on-one aide, help with showering, EYES ON HER EVERY SECOND, on the bus, in every restroom, restaurant, hotel, and especially every single step of the world-wind tour of the Big Apple. She would need help, paying, spending, choosing, interacting, taking pictures, keeping up, and winding down. She sometimes eats fast and chokes so she would need someone who could pace her, and provide the Heimlich maneuver if needed. Oh yea and her speech is impoverished so understanding her spoken words is nearly impossible. And don’t forget the double hearing aides they will have to be responsible for and PLEASE GOD don’t let her get her period on the trip!!!! We were reminded several times that Ashley was the only student with ‘significant disabilities” in our city to ever go on this 8th grade trip.

    The building principal was awesome and immediately agreed to draw up a plan to assure her meaningful participation. Special education covers the cost of the aide, and we, just like every other parent paid for the rest. OK … so we sailed through the agreement and funding.
    Now what?
    Were we out of our ever loving minds!!!!
    OMG… nightmares of our daughter lost in NYC plagued us for weeks.

    She went, she lived and we have dozens of pictures of ceilings, feet, elbows and foreheads from her instant throw-away camera. And we also have a tear-jerker photo album that her aide put together for us that included all the sights and dozens of pictures of Ashley included in group pictures with dozens of other kids we did not know.

    Sorry here is the end… a month after she got back from the trip we were in “game stop” for some purchase, when two, beautiful, tall, bouncy, teenage girls-laughing and engrossed in conversation, brushed past us in the store.
    Suddenly one of them spun around and shouted “ASHLEY” …. !!! That was followed by the other girl shouting the same as they both rushed her and gave her a three-way hug. Ashley grunted (a very unenthusiastic) “Oh hi” They bubbly chatted at her as she rolled her eyes and drifted over to the game section. Stunned I asked them how they knew Ashley. They explained they sat next to her on the bus ride to NYC, then made sure they sat next to her at every meal in the restaurants and that they loved her.
    I cried,
    Yup right in front of them.
    Yup right in the middle of the store.
    Actually I cried all the way home.
    Two beautiful teenage girls knowing and loving Ashley was our net result of inclusion.
    Not NYC.
    Not inclusion for inclusion sake, which in truth was good enough for us… but two teenage girls whimsically hugging Ashleyin Game stop; the girl they met and fell in love with on the 8th grade trip to NYC.
    I still cry.
    PS when I looked closer at the photo album of the NYC trip … these two girls are squished into several pictures, smiling broadly with their arms around Ashley. And Ashley… looks … well perfectly tolerant of their affection. He he he

    • Diane Engelstad says:

      Loved your story! How wonderful when the things you don’t dare hope for happen anyway.

    • Melanie says:

      Just returned from our 8th grade trip to D.C. I kept a watchful eye on “my kids” and made sure they did not eat alone. I am so happy your daughter got to experience the trip. What a memory and how refreshing to read!

    • Cristin L. says:

      It’s no coincidence that I’m forcing the issue; thanks to your story (which I’d heard before and loved) I have the courage and sense to push it. Thanks!

  4. Melanie says:

    I like your spectrum of embracing individuals with special needs. I can picture people in my school who fit each of those categories in the continuum. In fact, I can hear those words coming right out of their mouths. Hopefully we will see a movement towards embracing.

  5. Pingback: Durga Tool #9: My Care Map, or the picture that tells a thousand words | Durga's Toolbox

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