Sunday, May 15, 2011

A Place Without Edges

I hear so many stories of parents of kids with autism who think twice before taking their children to certain public places. I do it myself. There are lots of reasons for this—but chief among those reasons, especially for parents whose kids don't appear to have a disability—is judgment of their children's behavior by the Nosy McBusybodies of the world.

I recently took my son Jack on a four-day trip with his special hockey team to an international special hockey tournament. There were a lot of things I was worried about in advance of this trip: I was worried that he would throw up all over the team bus on the nine-hour drive to the tournament; I was worried that he would be overwhelmed by the tournament and number of games; and I was worried that I would lose him at a rest stop on the New Jersey Turnpike.

The one thing I wasn't concerned about was being judged for having a child whose behavior is outside the lines. 

That is the advantage of hanging out with people in the disability community. Even though each parent and each child who went on the trip were wildly different, we all had a common base and we all got it. I can't remember the last time I spent a chunk of time with such an accepting, nonjudgmental group of people. I don't know if I ever have.

I found myself overwhelmed with gratitude over and over during the four days of the tournament, making me the weepy doofus who spent the trip with tears in her eyes. Honestly, however, it can be startling to find yourself in such an embracing, encouraging, nonjudgmental (and fun!) group.

See, the world can be hard. For parents whose children experiment with the world by occasionally tripping strangers or who have meltdowns when lights are too bright or noises are too loud, the world can be not just hard, but sharp as well. It is rare to find a place without edges. It is even rarer to find yourself in a place full of sensory pitfalls and stressful situations and to know that there are 30 people standing next to you to give you a hug, tell you a joke, shoot you a smile—or not see anything strange at all.

A friend of mine, also a special needs parent, came to watch a game when we were in Boston. I tried to prep her a little by sending her a message: "Bring coats and prepare for sensory overload, but also know that no one here will judge you." (I might have needed that message more than she did.)

The hockey tournament was amazing, inspiring, and I am so grateful to have gone. Still, the four-day trip was tough on Jack and me. Being with this group of people didn't erase my son's inappropriate behavior, nor did it make it easier for him to regulate himself. It was still frustrating to chase after a seven-year-old pushed past his limits or unwilling to skate in his tournament game. Yet all of this happened against a backdrop of compassion and understanding.

I am very lucky in that I have an extensive online community of special needs parents and supporters who make this sometimes difficult journey infinitely easier. I wasn't prepared to find the same thing in real life. I hope that all special needs parents are able to find a community like this. I wish it weren't such a rare thing.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.


  1. I love our online community too, but I'm craving a real-life special needs community as well. Just starting to find one. Next weekend's autism walk is going to be an good step in that direction.
    So glad you had this wonderful experience. I, too, would be a weepy mess :)

  2. I love this! I love the title! We are finding lots of hard edges in our world right now, but it's nice to know that there are places without them out there.

  3. Varda SteinhardtMay 16, 2011 at 2:53 AM

    Hey Stimey,
    I am so glad that trip was wonderful for you. I remember how anxious you were before it. There is such a large SN parent community here in NYC, but somehow, maybe even because it is so large, we rarely get together. I have been feeling very isolated lately, hibernating on weekends in our cave, not wanting to navigate the world with my "too much" son and deal with all the crap that ensues. Sigh.
    Wish we had a regular "Sunday in the park with autism" or somesuch gathering of the tribe, I could really use a blast of that "embracing, encouraging, nonjudgmental (and fun!) group" feeling myself right now.

  4. Meeting you that day with my son was probably one of the best things I've done in a long time. Being with you felt like home. Being there felt like home. And it was amazing for my son to see all those kids there who were just like his brother.
    It's always good to be in an environment where people not only get it, but also have your back in the event that you just can't do it one more moment. I'm glad you found this awesome hockey crew for Jack, but mostly for you :)
    Hope we can sit around in coats by the arcade eating cookies again sometime soon.

  5. I'm all for Sunday in the Park with Special Needs. There is definitely something about walking into a world where everyone understands where you are, and wants to help rather than snicker.

  6. Thank you for sharing this story and it's so cool that your son was in the Boston tournamentl!
    We just ran a story on the BLOOM blog about a neat moment on the ice there:
    Is your son's team for kids with a variety of disabilities? I will check out the link.
    I had never heard of Special Hockey International. My son ahs short stature and tiny feet and we've never been able to find skates that fit him properly. But in talking to one of the teams from Ontario, I learned that they may know of a supplier. And seeing a child with a walker on the ice made me feel that maybe that would be possible for my son.
    Very cool! I'm so glad you guys could go. Louise

  7. Yes, you definitely soften the sharp edges.