We visited the church my mom had attended as a girl. We walked up the steps to the arched double doors, the same steps where she had stood, smiling for photographs, with her parents, at a girlfriend's wedding. The doors were locked, so we went around the left towards another entrance.
A young guy wearing a blazer and a backpack walked away from the side doors and toward us. "It's locked," he called out. "It's the same with all these great old cathedrals. They're keeping them all locked up these days. I even looked in the window. There are people in there. They saw me. But no one did anything."
The guy walked away, irritated, and crossed the downtown street, his light hair ruffling in the wind.
We turned back to the front doors, tried them again, no luck. Spotting a sign, we crossed the sidewalk and inquired at the diocese offices, where they told us to go towards the back of the church. Around the right side, through a gated courtyard, we found the open door.
The day chapel was filled with noon worshipers. We tiptoed past them towards the sanctuary doors, while my son asked, loud enough to turn heads, "Are these locked too?"
The sanctuary contained a surprising number of people, too. A small woman, her dark hair back in a bun, wearing jeans, was eating a sandwich near the Virgin Mary. When she saw us taking pictures, she waved us over, pointing us to a sun-lit stained glass window. Wiping her hands, she retrieved a pitcher and poured holy water in the baptismal font. When Jack announced that the side door font held no holy water, she quickly walked over with her pitcher, Jack trailing her every move. She held the font as Jack demanded to dip his hand again. All children love doing that, she said smiling. She said that after the renovation, they had not replaced the votive candles in front of Mary's alter. She didn't know if they ever would, though why not. We compared the differences in the sanctuary from my mom's memory and now. It didn't look the same. Still, it was thriving.
Perception is not a clear lens. One person's experience may be real, in that they experienced it, yet still inaccurate. Our brains make patterns, predictions, and conclusions, even when there are none. One person walked away from the church convinced it was locked and the people unfriendly. Another person found a church full of connections, sandwiches, and welcome. The young guy's experience was real, but his perception wasn't accurate.
The story is the same for parenting autism. One parent tells a story of pain and disconnection. Another parent finds joy and togetherness. But are both stories accurate? Is it possible that one person's locked cathedral is another's welcoming one? If the parent in pain has an inaccurate perception, is it even possible to support her while repudiating her views? Is it possible to connect with each other while rejecting the storyteller's premise?
Is it unsupportive to point her to the open door?
Is that even our role as a community?
I'm reminded of the Venus/Mars communication roles. I don't buy the male/female assignments, but it might be a talker/listener thing instead. The talker wants to vent, to release upsets, and to be understood. The listener may just want to fix the dang problem. Female friends seem to understand their role as listeners for each other. When a girlfriend calls to vent about her boyfriend, we don't say, "Oh, for Chrissake, this is the thirtieth time you've complained about the same thing. Just break up with the dude. He's no good for you." Instead, we'll agree and validate. "That's awful! I can't believe he did that." Maybe it's cultural fear of confrontation. Or maybe, we recognize in our friend the same mistakes, the same emotions, the same pain and realize that we'd want to be heard and supported.
Counselors know they must offer support first. They build a relationship, gain trust, empathize, empathize, empathize before even thinking of offering advice.
So what's the goal of the autism community? To support each other? To build bridges? To educate? Can we change minds without alienating, isolating vulnerable members? Do different players have different roles? Are parents in need of one kind of forum and autistics another? Is there a place where some can go for nonjudgmental, unconditional support and a place where others can go for accurate, mind-changing advice? Is that the difference between an online forum and an advice book? A personal therapist and an awareness campaign?
Is it possible to have the same players for all roles? The same place?
Or are they all locked cathedrals?
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I feel the autism community can be just as closed off as any community. And not just b/c some people have different ideas or beliefs. There have been times I have reached out, only to be rebuffed. My perception? Maybe. But, there definitely seems to be a hierarchy within the community, and some people are not there for support as much as they are there for "branding". When I write, when I go on twitter, it is to talk with real people. I think on top of us being split by personal beliefs, we are also split by simple high school games, where some are just too cool to "hang" with others. I have my own support community, or real moms wanting real connections. The issue is weeding those people out, and not taking it personally when you are ignored or forgotten about by others.
ReplyDeleteIdeally, yes, we should all be one, big community, here to help those most in need. Willing to talk and email and connect. Getting over the debates and just being there, parent to parent, to support. Some of the people I have connected with best are not ones I have beliefs in common with (some are at the opposite end of the spectrum in that regard), but those who have chosen to open their hearts and minds to other parents and who truly care.
People feel alone because, even though there are so many of us, only a few of us are really willing to be "there". It's sad but true. I, quite frankly, have all the info I need. What most of us need now is a friend.
I would hope it is to support each other. We are all in this together, even if our journey isn't exactly the same. I am sick and tired of the autism wars. Worse than the Mommy wars. Folks, we are all just trying to do the best we can here. We should be supporting one mother. Strength in numbers, right?
ReplyDeleteAnd yep. One persons cathedral is another personsain. I know that all too well.
Persons pain. Dang autocorrect.
ReplyDeleteI like the analogy.
ReplyDeleteLet's say the following Sunday you visit a second cathedral. This one is locked like the first, but there are no friendly sandwich eating women to trail after, no open diocesan office to direct you to the open doors.
The problem I have with anyone trying to "change" anyone's opinion, or "open doors" is that not only are the experiences different from different peoples' perspectives, but some of the cathedrals really ARE locked. Some of them really AREN'T friendly or accommodating. And without really getting to know the person first. . . becoming friends, sharing experiences, it's not fair to compare my success gaining access to the closed cathedral with someone else's failure to gain access to their locked one.
Still loving the writing.
Everyone has their own journey...their own personal experience and their feelings about said experience. We have to respect out differences, that is the key to the success of our communities and our country for that matter. I could say, I don't see how anyone could possibly be a Republican. I mean really? But, I don't go there. I respectfully disagree, but still listen to where they are coming from in order to understand.
ReplyDeleteYou have a beautiful mind Brenda...thank you for sharing it with us.
I like your reflective analogy. In retrospect, I often find that in my various moments of pain, I might have missed seeing the door around the corner. However, it is also true, as Jim says, that sometimes the door is locked even if it wasn't for another. Context is so important, and sometimes I think, especially in the online forum, we are too quick to judge others' experience or tell them the "better" way to feel or tell them the "fix" when what would be most humane is simply to validate and show empathy. Beautiful writing.
ReplyDeleteOne part may be open and another locked. I think it happens to depend upon the person you meet at the door. We just came up against such a locked door ourselves. The college where the boys attend is one of the most understanding and open places for post secondary education. It is their mission to advocate for everyone. Their understanding has allowed my boys to continue with their education as they work on the "issues."
ReplyDeleteHowever, we have come up against one locked door. My oldest had a job on campus and of course had some social issues. WE began to send a job coach with him, but the director of the program said he did not want to be bothered with my son. I contacted the disability director and she was mortified. So were her bosses. While I told her that I don't want him to go back there (apparently there are alot of problems in that dept to begin with) I did say that I would like him to have something somewhere. They are going to figure something out hopefully.They are also going to have a bit of a talk with that particular individual.
Luckily we had opened up many doors before we came across this locked one. But there are always locked doors you come up against in life. It's knowing how to handle them that makes the difference.
What an interesting analogy. I think the cathedral can of course be different to different people. To some it will be a refuge and to others it's a circle that keeps them outside. Van Gogh's paintings show the cathedral as having NO DOORS.
ReplyDeleteA situation may very well be quite painful for some, and to be told it's not just adds more pain, y'know? Who are we to say the parent in pain has an inaccurate perspective? Do we walk in that parent's shoes? It has been a challenging year for my son - I love him dearly but seeing him be in pain is painful. Now I know it hasn't always been this way and it won't always be - at least I'm hoping. I find some sites are just too hard for me to handle right now.