12/30/2015

You Are Perfect

Yesterday we had a really rough experience taking our kids to see Star Wars--trust me, we did everything we could to be as considerate and unobtrusive as possible out of respect for other patrons: midday showing on a weekday, weeks after opening, got there early to sit as removed as possible from other people, lots of popcorn to keep them munching and distracted, etc--but a few incidences of Roger loudly commenting on what he saw on the screen and a few chair bumps (with both Jason and I carefully whispering in their ears and helping the kids adjust) greatly angered a few people.  Most people didn't even turn their head but the people directly in front of us were shooting death glares and complained to a manager and essentially got us kicked out. Even though it's very obvious that Roger is special needs. And they never even flinched when the 10 year old boy directly to their right was asking his dad questions during the movie.

We left humiliated and ashamed. We were given vouchers, but the manager, whom we told about the autism, hovering over us from four feet away to kick us out at any minor infraction--in front of the entire crowd--was dehumanizing and I escaped with Juliet before he had the chance. In the hall he saw my face, so red it was purple from the shame, and as I told him through tears that we did everything we could to make the experience go smoothly even though we didn't have a single issue at our first family movie in July, he said there are theaters that do special sensory showings, like it's the first time I have heard that before. That our family doesn't belong, but there is a "special" place for us.

[Caveat: Yes, I know there are sensory screenings of movies. Trust me--if that were a good option for our kids we'd be all over it! Those aren't a good option bc Juliet is super easily distracted and lights on would lead to her running around instead of sticking close, and Roger actually prefers the dark so he's less aware of--thus less anxious about--the room full of people. Not to mention if it was loud with a lot of other kids that would distress them, as they both are deeply empathetic emotions wise and get overwhelmed easily by anyone who seems upset in any way. And please also understand that we aren't aholes--if our kids were actually making any sort of scene we would get them out of there. I could sense Juliet getting restless once so I missed 15 minutes of the movie to take her with me to the bathroom and have a short walk to calm her down. No different than if we had a crying baby we would rush out of the room. But these infractions from our kids were not that, were legit VERY minor.]

I told Jason through tears on the way home that if they isolate enough genetic markers of autism I have no doubt that we'll see parents testing for it in utero and aborting their babies the same way they do with Downs babies (at a rate of a whopping 90%). There are persistent attitudes our family, and others I know, face from people that we don't deserve to access the same public spaces because we are special needs. And I think next time we are clearly working hard to help our kids know they belong in this world, too, and the Lord created them and gave them life just as much as everyone else, and someone tells us we should go to a special / separate place I will look them in the eye and ask if it's next door to the special room for Black people.  

The tragedy of our society (and world) is humans want nice, easy clean lives with perfect little children. What people don't know is that, yes, my children have autism, AND they are perfect. Not but--AND. P!NK's song "F**kin' Perfect" played on the radio a lot when I was pregnant with Roger, and almost five years later, autism and all, I still cry every single time I listen to it and attempt to sing along.

Anyone who knows Roger and Juliet knows how sweet they are, how they don't have any comprehension of what it is to try and make another person feel bad. How pure they are, with no guessing games or manipulation at play; it is easy to know what they are feeling and it never even occurs to them to do or be anything other than exactly what and who they are. There are so many hard parts, to be sure, but there is great beauty in the complexity of how they are knit together. 

Friends, I beg of you, the next time you see a mom with a flipping out toddler don't assume the kid is just a brat. Or that if the mom just spanked more the kid would get in line. You NEVER know someone's circumstances. Maybe the kid has autism. Or excruciating chronic pain. Or maybe the dad recently walked out on the family. So many of us go through life feeling like we're barely holding it together and as little as a kind look from a stranger, or a word of encouragement to the struggling mom, can be the super glue that gives us the strength to not give up on life. 



Lastly, this: I keep telling our kids they are a gift. So Juliet climbed up on my lap as I pondered these things and said, "I'm being a present!?" 

Yes, my darling Bubby Girl. Yes, you are.

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