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Part of Our World

There are days I want nothing more than to throw my hands in the air and cry “Monkey” – you remember it, the one word cry from our youth which ended everything. It was the universal code for, “I give up. I’m done.” in any battle whether it be a tickle war with a crazy uncle or a wrestling match with an equally insane older brother. Crying “Monkey” brought it all to an end.  But these aren’t tickling wars or wrestling matches we face in our roles as parents of a special needs child. The struggles I’m thinking of today are moments of spontaneity.

Spontaneity can sometimes be good:  the unsolicited laughter of a child; little hands on your cheeks to turn your attention to something he has done, or even better to look into his eyes; a louder than expected “Mommy” from across the room, followed by “Love you, Mommy” or “Thank you.”

But sometimes, loud isn’t appropriate. Sometimes, others get upset. Sometimes, others are bothered. We adjust. We exit. We divert attention. We deal with the situation at hand.  In the process, we sometimes stick out like a sore thumb. We deal with that, too.

But then there are times, when none of that matters. We do our best to handle situations so as not to be the spectacle it seems we are becoming, only to realize it’s all okay, simply by watching the actions of other kids and how they tolerate, deal with, interact with, and honestly accept and even celebrate our son in their world.

Four of our children have spent the last several weeks preparing for a show which hit the stage of the Ellisville Opera House as part of the Spoon River Drive this weekend. No kidding, practices three to four nights a week for about six weeks with 36 children ages three through 13. It’s a huge undertaking, but the director does it with a smile and love for each child that transcends any amount of scolding and, “C’mon guys, do it again!” she can dish out.

It’s a rigorous schedule to say the least and one that Ben just can’t handle beginning to end, especially with school in session.  So it is, that his was a small, but precious, part in the show, allowing him to participate, but to forego rehearsals up until about the last two weeks – a blessing, indeed.

"Welcome to the House of Mouse" Ben portrayed Steamboat Bill, as featured in Walt Disney's first animated short, Steamboat Willie.

“Welcome to the House of Mouse”
Ben portrayed Steamboat Bill, as featured in Walt Disney’s first animated short, Steamboat Willie.

Still I stewed over how to keep him quiet while waiting for his turn and how long it would take before the other kids had just had enough of the extra noise he can create, especially those kids new to the cast who had never met Ben and know nothing of autism.  Happy or not, noise is noise and that sometimes makes it hard to focus on the task at hand.

I don’t recall there ever being a time of sitting the kids down for a talk to explain, “This is Ben and he has autism, so just be patient and we’ll make it through.” There were a few nights I wondered if it might not be a good idea, but we all just rolled with it. Over the days and weeks, I realized that just wasn’t necessary. We all know how brutally honest kids can be, but the only thing I saw from these three dozen kids was love and acceptance. Sure, there were moments of curious eyes landing on my son, but that’s all it was.  No condemnation, just curiosity.

Rehearsals often held times of break-out sessions for various groups working together.  When they had a break, the kids often walked down the street a bit to a little park to play together while waiting their turn. My heart melted the night another little boy stopped halfway there, turned around and yelled, “Hey, Ben!  Do you wanna come with me!?” And on show day, when another little boy (coincidentally a brother to the one who invited him to the park) stopped, said, “Hey, Ben,” waited for eye contact, and gave him a high five and asked for a hug. Again, when Ben and I were walking backstage to get his props another boy stopped what he was doing to say, “Hi, Ben!” And finally, when I noticed a couple of the older girls smiling while watching Ben giggling with his oldest sister just before show time.

These are the moments which make every struggle, every battle worth fighting. This is the kind of world I’m praying my son can live in – one in which he is not only accepted, but included and celebrated. Despite all the negative news stories about kids today and how they treat one another, I can attest to the fact there is a group of kids who are here for my boy. They love him. They are trying to understand him, but even when they don’t understand, they still accept him. They include him. They celebrate him. And I love them for it. Not just for that, but this is huge.  Part of me says this doesn’t just happen. But when I see it play out as I have, I kind of think maybe it does, if you just give it a chance. Perhaps that’s why it happens at all – the kids just give him a chance. This attitude starts at home with the parents and the way they are raising their kids to give others a chance.  Thank you, Rascal parents. You have done well. You have done very well.

SRR Disney cast


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