Sunday, August 25, 2013

Church: Place of chewies, backrubs, and communion

Today is Sunday. It was suppose to be the last day with Elijah's church parapro (cousin Michelle), but she had to cancel, so he was sitting with us. His usual pattern is to sit with us in "big" church for about 30-40 minutes, then leave with Michelle for his reward of blowing bubbles upstairs in the gross motor room. Sometimes he can sit longer, sometimes not much at all.

The noises, which I don't really notice unless it's totally quiet like at church, are the slurps and wet chewing on his favorite chewy: a rope of seatbelt material. Every few minutes there is sudden grab of our faces, drawing us in for a nose rub. This is usually accompanied by snorts and quieted giggles.

The actions, although very quiet, are very busy. Our hands are constantly moving. They are rubbing his back, or scratching his head, or massaging his legs/arms. Today I was "drawing" on his hands with capped pen. Eric and I looked at each other with a grin because he pulled both of our hands toward his back to scratch. He craves the sensory input. It has a calming effect on him and we are happy to busy our hands if that helps him.

Today was special. I usually miss service because I am working, but as miracles happen, I was in service! We three sat in a back pew of our full church. On the end of course in case we needed to bolt outta there. My Lijah sat in between us and listened, leaned, and loved. He stared at the beautiful windows. He listened to the wonderful music. And, he walked with us to take communion.

Thinking back to this morning, I get teary eyed. My crazy, unpredictable, loud, nutball ASD kiddo WALKED up with us to get communion. (He didn't take it because we weren't at the gluten free station, but still.) My church family got to see him in a different light. And we got to see him in a different light.

On days that seem out of control and completely messy, I will challenge myself to remember this day. That my child, my Father's child, sat with me in church. I can't say how much HE took in, but I sure was reminded of the blessing of small victories.

One of the beloved chewies. They get washed almost every night. :)

Saturday, August 24, 2013

It's all in a name

What to name this thing? That was my excuse for not starting a blog for the past few years. Then it happened. The air conditioner broke this week.

Elijah, my sweet almost 10 year old who has labels like autistic (ASD), deaf, and cognitively impaired, was having a really rough day.

The windows were open to let the cooler breeze come in. I jumped in the shower (a rarity which is gross, but true). While I was shampooing I heard Elijah start to get vocal, then more vocal. His voice, which is a crazy mixture of deaf sounds and nonverbal ASD stims/grunts, was getting louder and louder. The screams of annoyance  were turning into screams of anger and crying.

I know when the windows are open, people who walk by the house peer in. I can only imagine their thoughts: What's wrong with that kid? Is he hurt? What are they doing to him? The neighbors avert eye contact. So we keep the windows shut, keeping our world away from the rest.

That's when the name popped into my shampoo-filled head: living with the windows shut. It is a true statement at it's core, but also a great metaphor.  I think there is a lot that ASD has held us back from in life and this blog will touch on how we have mourned that and figured out to live within those new, and ever-changing, boundaries. But in conjunction with the bummer stuff comes the amazing. The victories, the joys, the lessons being taught and learned, and the craziness of living in our family.

Welcome to Living With The Windows Shut.