Wednesday, April 27, 2011

Patience, Awareness, and Justice

Sarah MacLeod

During announcements, my heart dropped.

The service leader announced, "Remember that at noon, we have our congregational meeting about the accessibility improvements to the church."

To be clear, I completely support the church's improvements plan and the capital campaign required to bring them about.  Armed with my knitting, I knew I'd get through the potentially too-long meeting to put these issues up for congregational vote.  While the meeting may be tedious, it's truly democracy in action, and the improvements are necessary. Our church is built on four different levels, connected only by stairs.  We're without an elevator (action item number one on the list), accessible bathrooms (item number two), and many other amenities that would make our facility the accessible building it should be.  It's an old building (the meeting-house is 160 years old) with numerous additions made over many years, resulting in a markedly unwelcome building for those with disabilities for a church that prides itself on being a welcoming congregation.

So it wasn't the subject of the meeting, or even the meeting process itself that caused my apprehension. It was the dread of my younger son's reaction to the news that we'd be at church, a place he usually likes, for an extra hour or more. That part would be a surprise, which he doesn't like.  My older child was likely to groan a bit, then join his similarly trapped peers. He would complain just enough to let me know that he'd rather head home.  But my younger child, recently diagnosed with an autistic spectrum disorder, was likely to revolt.  Loudly.

"We're not staying for that, are we?" he stage-whispered to me.

I started with an apology, attempting to curry some good will from my son, and added that I'd forgotten the meeting myself.  Briefly, I contemplated a quick escape after a cup of coffee in the hard-to-get-to-if-you-have-difficulty-walking-down-stairs gathering area.  But, as much as I wrinkle my nose at the thought of a long back-and-forth (or whatever it is when Robert's Rules of Order are followed) about the accessibility  project, I delight in the democratic process of my church and the earnest, honest way it plays out.  I took at deep breath before replying, "Yes, we'll be staying.  It's like election day.  I have to be there to participate."

My younger is apparently more enamoured with dictatorship than democracy (unless the vote goes his way) and was unmoved.  He was caught unawares. He had no template on which to draw for how the time would play out while I was in a meeting, and he had had enough of people.  Somehow, he dropped the issue for the rest of the service, although I knew I wasn't in the clear.

Sure enough, as soon as the service ended, he started back on the issue. Why did we have to stay? How long would the meeting be?  Where would he be during the meeting? When could we go home?  Did we really have to stay?  We were staying, I calmly told his panicked visage. We'd stayed before for these meetings (albeit with mental preparation, for a few days ahead), and he'd be fine.  He went on for a while then galloped off, not happy but no longer looking panicked.  Before heading into the meeting, I noticed he'd made his way into the room where the younger children would be supervised during the meeting.  I didn't dare make additional contact, and seeing that he looked content and busy, I headed into the meeting.

An hour later, the vote for the needed changes secured, I gathered my knitting and went to find my boys.  My younger dodged the crowd to get to me, with no telling expression to let me know how it went.  He made up for his impassive face with the first sentence. He was full of indigent anger, "They kept me prisoner in there!  I told them I wanted my freedom, and they told me I couldn't leave!"  Tears came to his eyes as he gestured wildly to punctuate his take on the injustice.  As we wound our way to the coats, then to the car, gathering his (older and therefore free) brother, his tirade continued, fury mounting.  I attempted to get an accurate picture of the situation, doubting an hour under the care of some middle and high school youth that conditions were quite as desperate as he stated, but reason had long departed him.  On our way out of the building, we ran into one of the "bratty high-schoolers"  who had kept him from "escaping."  The youth raised his eyebrows as he listened to my son's tirade, then turned to me and said, "He is really persistent when he wants something."

Tell me about it.  I stumbled over a quick response, acknowledging my young son's tendency to get a bit stuck.  My son screeched again, and out the door we flew.  As we walked through the parking lot, my older son pointed out a magnet on the back of the car next to us:  Autism Awareness. "Hey, look!  They have the same magnet we do!"  His effort to distract his younger brother was unsuccessful, but the irony struck me.  Autism Awareness. Yeah, I've got that.

On the way home, I tried to ferret out more details, but he was so wrapped up in his perspective that little came forth.  Knowing him as I do, I'd venture that he had indeed asked to leave (loudly, and with references to prison) but hadn't asked to be reunited with me in the meeting, as this request would have been met.  I explained again about safety and the need for the younger children to have some supervision while the meeting was in progress, but he remained stuck.  After all, he maintained, usually after church, while the adults had coffee and conversation, he ran around the playground or hung out in the church without being "imprisoned."  I got nowhere, and, fortunately, he ran out of steam by the time we arrived home.

Autism Awareness. Awareness that the unexpected is his enemy and predictability his ally.  Awareness that justice for him means adults and children (and even "bratty teenagers") should all have the same privileges.  Awareness that while his words flow freely and his ideas are complex beyond his years, his understanding of how to navigate the neurotypical world he inhabits is relatively underdeveloped.  Awareness that he can learn, with patience and support, how to navigate this world with, I hope, relative comfort.   

Autism Awareness?  Yeah, we've got that.