Monday, June 13, 2011

A night in the life of autism

Tonight we went to our church’s version of vacation bible school called “Party in the Park”. Our church’s building sits, quite literally, at the crossroads of two very different neighborhoods in our Midwestern Capital City. The old, graceful & stately mansions immaculately maintained by doting and well-to-do movers and shakers are mere blocks from one of the poorer, blighted and tougher neighborhoods in town, and our church is right smack in the middle. This church has worked hard to welcome and serve all, and the rainbow of people in our pews each week reflects this diversity (which is one of the main reasons we are members.) Instead of offering a VBS for our congregation and asking congregants to invite friends, we put out tents in our parking lot and the nearby park, serve dinner, provide live music, play games and say “everyone come – this is a neighborhood party - join in the fun!” We get a good turnout, and it is wonderful to see all types of people under the same tent, eating together and conversing, as if this happens every day.

And it can be noisy, crowded, and overwhelming.

Initially, the noise reducing headphones were left in the car because when asked, T did not want them. But as we got to the registration table and heard the band playing under the large tent, the headphones were not nearly as unwanted as they were moments before. Back to the car we trekked, the headphones were retrieved, and we returned to the tent to eat dinner. It was just noisy enough that T did not eat for a while, but just sat there looking around. After some prompting, he did eat. We are thankful that he is a good eater, and picnic fare is a pretty safe & acceptable bet for him.

Then came music time: group singing. This is such a frustrating curiosity to me…we go into church and he almost insists that we sing. “Sing!”, he requests, “sing!” But anywhere else, chances are that it will not go well. In some situations it is okay, however, but it seems that many attempts at desensitization need to occur before he is okay with it. If he does not expect it, or if he’s already in a stressed state, if a group starts singing, we are in trouble. And the leader began the song, and so did the usual breakdown.

What happens? When he is stressed, he repeats words he has heard when he has been stressed before, and will repeat them insistently, looking me directly in the eye until I repeat them back – which of course, only makes it worse. “Stop playing with the microwave”, “Be gentle with sing”, “be gentle with Happy Birthday”, “be gentle with the phone”…over and over, until inevitably he cries. I haven’t figured out how to break the cycle yet. And I didn’t tonight.

This absolutely breaks my heart because one of my fondest memories of camping during the summertime was all the singing. Our church went on a week-long “family camp” and after each meal we’d sing and sing out of mustard yellow songbooks filled with peace-loving, fun songs - I learned some great singer-songwriter songs during that time. And we have a family that sings and would love to sing the Doxology before meals when we are all together, but it is not possible. I long to stand around the piano at Christmastime and sing carols with my family, but we can’t. And that makes me sad, so sad that tears are welling up as I write this. I love to sing, I love group singing, and my son hates it.

Except in church. But this wasn’t church and it certainly wasn’t the sanctuary, so it was NOT okay with T tonight.

We took a break, away from the crowd, and he cried for a while on my shoulder. Then he pulled away, because of course, I can’t hold him for too long.

After the tears dried and the singing was done, off we went to the arts & crafts table. Another struggle. He doesn’t do arts & crafts – it requires lots of listening to directions and using fine motor skills that he just doesn’t have yet, so these are always frustrating events for him. But I carried on, hoping that with hand over hand guidance and Mommy’s TLC, we’d get it done. Nope. More repeating the stress phrases, more tears. And by this point, I’m fighting back tears myself. How much work does this has to be? How far do we push inclusion when it does nothing but stress him out? We leave the tent with a dreidel that I’ve made with his scribbles on it, but I hang on to it as a trophy of our noble attempt to participate.

Then, things finally look up: game time. He played his first game of Corn Hole, and did a nice job (assisted) with taking turns with a bright, handsome kid from the neighborhood (and got two of four beanbags in the hole.) Bubbles are always a hit, so we played with those while the other boys played kickball. Seeing how much fun they were having, I took T over to watch the game, and then decided to get him in line for his turn to kick. Why not? How much more stressed could he be, honestly? When it was his turn, the ball was rolled to him, and he waited until it stopped (he’s not ever tried kicking a ball on the move like that), but then gave it a good kick and I took off with him in hand to first base. We made it! And he was smiling and laughing all the way. The next boy went, and off we went to second base, then third. We made it home on the next kick, me pulling him along and him laughing and laughing. Evening salvaged.

The evening finished with chocolate chip cookies for all, and then it was time to go home. And we do this all again for two more nights. Perhaps we’ll skip the group singing and arts & crafts. But if I do, will he ever learn? If I don’t give him the opportunity and stretch his comfort zone, how will he ever acclimate himself to these situations? How much of a childhood does this kid have to miss?

So I will carry on.

If not with this congregation, where?


Cristin Miller said...

Carrying on is the all any of us can ever do, especially because it makes it possible for our kids to surprise us and themselves. Sending lots of love your way and hoping to do some group singing with you again someday!

lemming said...

You find the joy, and this is one of the reasons why I admire your family so much.

In my Women's History class, one of my textbooks is all about the experiences of women on the Western Plains. At one point, it seems like you (the reader) have just plowed through 186, 000 pages of why such a life could be miserable for these women, at which point the author asks, "how did these women carry on?" I then feed this line back to students - their essays (some of the best every time) echo what you have just said. These women did not have what they wanted, they did not have what they dreamed, they felt isolated and lonely, but they found the moments of uplift, the moments of peace, the moments of laughter.

Like Cristin, always happy to sing. Perhaps we could make this into a girls' event?

Caela said...

Thanks for this poignant and insightful look into your life. As always, you are the most amazing mama a boy could ever wish for. I'd love to share this on my facebook for other people to read. Would you be comfortable with that?

tommysmommy said...

Caela, of course. Cristin and Lemming, thank you for your continued words of support. They mean more to me than I can easily express! Thank you all for being part of my Village.

Anonymous said...

I am not sure how I got out of the routine of checking your blog...maybe it is because the other family member finished his PHd. You, however, are on a continual research project that keeps on are an amazing person, T is so very lucky you are his mother...I know he feels your love every moment of every day...xoxo nonie