Our extended family...

C & I had a funny/strange conversation this evening, while sort of reviewing the day after putting B to bed. I mentioned that I had wished this morning at church that I could put a sign around our kid's neck that read "I am Autistic (see my mom or dad for details)". C agreed that B had been particularly on his own planet this morning, which can make for interesting reactions from those who aren't regular attendees at our church... What inspired my comment was B's burying himself so deeply in a book during the first part of the service (before the kids leave for Sunday school) that he was completely oblivious to those trying to greet him. The guest speaker today, associate minister at the other UU church in town, had come down from the pulpit & was greeting those in the front. I saw her head toward B, stand there for a moment looking at the top of his head (literally buried in the book- he's going through Beverly Cleary's at an amazing pace :) & then slide on down the pew to shake my hand. It was too brief an encounter for me to say anything meaningful to her about my son's behaviour. I was more rueful than embarassed, really. The book stategy has been in place for a short time & represents many victories on B's part. He's only been able to pick up a book & lose himself in it for about 3 months. Before he could distract himself by reading, the early part of services were often excruciating for all three of us (& unnumbered gentle souls who never said a word...). After the onset of the OCD, B found sitting in rooms full of people nearly impossible due to "thought" triggers like babies or small children, which would cause him to moan & wriggle in distress. C & I would take turns holding him & trying to distract him. You may wonder why we put everyone through this... I guess, for me, it was partly a leap of faith that it wouldn't last forever & partly a need for us to be together as a family & partly pure pigheadedness... Then, one of his Sunday school teachers started asking him to help her with ushering- handing out programmes & taking the collection & this helped a great deal. Somehow, having a purpose & focus really helped B & I bless this friend's creative & unsolicited solution to his distress. When this friend joined the choir & stopped ushering things were tough for a little while, then the reading kicked-in & B's been much more comfortable & functional in church since then.

Back to hanging a sign around his neck, though... upon reflection, it seemed an odd impulse, particularly in light of the spectacular tics my kid is capable of producing- there is no way anybody can assume that he's "normal" after seeing one of those. It brought to mind something that happened over the holidays. During the intergenerational service the Sunday before Christmas, some kids were drafted to hold up cards representing the "12 Days of Christmas" in front of the congregation. After the service, an occasional attender remarked to me in passing that she thought it odd that my son was holding his card away from the congregation, with his back to everybody. Although the whole encounter passed before I could say anything in reply, I must of had a strange look on my face after she said this. I remember telling C how strange I'd thought her remark... The denouement didn't occur until just a couple weeks ago, when I mentioned in Joys & Concerns (part of our regular Sunday service where anyone can briefly share a joy or sorrow with the whole congregation) that I was blogging about B & our experiences raising a child with autism & finding it very helpful. This same woman approached me after the service & apologised for her earlier remark, explaining that she hadn't realised B was autistic. It was a very kind thing for her to do. It made me realise that, as open as we are at church about B & his struggles (& triumphs!), I can't just assume that everyone knows what's going on with him. It's also made me realise how lucky we are to have this larger, extended family in which to be open about B, where we can find strategies for coping in public with our kid with very little risk, & where we can find a sense of comfort with our being an "alternative" family. So I guess my wishing I could hang a sign on B wasn't so weird after all, in light of the loving community we've found in our church. It's not such a wild dream to imagine B as an adult member of this, or any, congregation, giving back the love & acceptance he has learned while growing up in such a place. To all of you (you know who you are!) who may read this- many thanks!!!