It was Christmas Eve again. We were in church. Or, rather, it was before church. A number of folks from a college music group (college was 30 years ago) were getting together to play for the Christmas Eve service. My family was all in one room -- the rehearsal room before the church service. My daughter was playing horn, my spouse was playing trombone. I was listening. To everything. Because I knew that my son did not want to be there.
Phil is 20 years old, 6'2" tall and 285 lbs. He is severely disabled by his autism, and is incredibly bright and talented. He is not conversationally verbal. He is generally easy-going, but when he's pushed past his "limit" that's the end of his ability to tolerate "our world." He has violent panic attacks. Christmas is the Perfect Storm: hushed sanctuaries, lights, added decorations, new churches, we were visiting grandma. Too much was new.
I knew it was time to get him out of there. Over the years, I've come to recognize the signals of "overload," and I've come to know when to watch for them. They were all present. He was pacing, barking and tense. I braced myself and told him that we would leave the one place I wanted to be that night. We walked out into the parking lot. I heard the church service begin. I was fighting feeling sorry for myself because I really wanted to be in there, making music with my family and friends, or at least listening. And that's when Phil started screaming and trying to get back into the church.
I knew that if he got in there he would stand at the back and probably scream at the top of his lungs on this Holy Night, probably something that no one would understand, and it would completely ruin the whole Church Thing on Christmas Eve for everyone. He was struggling with me. He's too big for me to deal with physically anymore. He was screaming and making ground back toward the church. I had to get him to the car -- to the hotel, and to what for him, was sanctuary.
It worked out. I remembered "low and slow" and we both calmed down. Of course he was sensing how angry I was about the whole situation and that once more everything was different than I had planned. He was reacting in the way he reacts, with his own need for everything to be "normal." I remembered that, sat him down, walked into the church, got the keys to grandma's car which held the magical talisman-of-the-week (an iPad), put him in the other car, took the keys back and drove him to the hotel.
I was thinking about another time when things didn't work out so well on Christmas. Another time that there were travelers and there was God-in-the-world in a way that no one understood or could comprehend. Another time that folks had to deal with their "normal" being ripped apart by the "normal" of someone else -- of God.
We sat in the hotel room, Phil and me alone together on Christmas Eve once more. He hooted softly at Google Maps and the weather channel on his iPad (which he had networked four different ways before he settled on the system he wanted to use). I poured the diet cranberry ginger ale, and we sat, calming down. He snuggled up, put his head on my shoulder and wanted me to fix something. (An imaginative game we play when he is worked up. We find something to fix -- a car, a leaking window, a sports dome.) I said, "fix, fix, fix." He let out his deep sigh. "Normal." He said. "Normal," I agreed, closing my eyes and relaxing with him.
Once more, there were no churches but a strange room at someone else's hotel, no choirs but those in the drone of the electricity and wireless connections that Phil hears so much better than I, no worship but relationship with something Holy -- something Other -- something no one could understand unless they were there on that Silent Night. Once more, an opportunity for me to let go of all of the trappings and see them for what they are, and to see my son for what he is and the realities he unfolds for me every day. There is another world, another "normal," another place with which I am becoming familiar -- the world inside the very deep soul of my autistic son.
Allen Frances: Why Are Kids Suddenly So Sick?
Enjoying the magic of Christmas – autism style | Autism Support ...
Autism-friendly Santas to Save Christmas for Autistic Children | Fox ...
www.mercola.com
Thank you for this wonderful reminder!
seems it found you & your son
very nice ;)
I would post a picture if I was allowed - hes a very beautiful boy :-)
I also have vitriol about how he got here and the awful way he is treated but this is not the article for that ... this is about my son and your son and the other kids and the happiness that is .... not despite or because .... but just because they really are wonderful and inspirational ....
My son has autism too.