Autism – Brandon Woosley

No Saints at the Dollar Store

I was shopping with one of my sons over the weekend. The store wasn’t especially crowded, but they were short staffed and so the line was long and slow. My son is usually in motion, so waiting in line requires using a variety of sensory-input strategies to pass the time. Little stay-in-place activities like giving hand squeezes, standing on his toes, or even small bounces in place will help him to endure the tedium, and so we did these things as we waited for our turn to check out.

He also likes things to be orderly, so when items at the check-out line, like the candy displays or the plastic bars to separate orders on the conveyor belt, are misaligned he will organize them while he waits.

When it was our turn to check out he stood with me at the register as I tried to get the card reader to recognize my debit card. Then he noticed that someone at the front of the store had left a helium balloon unattended. This reminded him that he loves to release balloons to float off into the sky, and he quickly walked to the errant balloon and started for the front door. Seeing this I left the register (debit card still sitting in the card reader) and blocked his path. “No, no, that’s not yours, we need to leave it alone,” as he tried to push past me, before accepting my redirection and letting go of the balloon. The entire exchange took less than 5 seconds.

Returning to the register my card was finally accepted, and he took our bag and headed for the door. “Thank you,” I said to the cashier.

“Have a good day. And you have the patience of a saint,” she responded.

Usually this sort of comment triggers embarrassment in me, as I would rather move through these life moments unnoticed. When he was young, I would feel the burning sense that I was being judged as insufficient as a parent and a caregiver – maybe even being exposed as actually being insufficient to this role. This time, I was initially confused, and then I was angry.

Confused, because his actions in the store were so inconsequential. Nothing was lost or broken, no one else was inconvenienced beyond the seconds it took to redirect him back to line. Why did this woman think I was being patient? Then her view of the moment sucker-punched me: I was impressively patient because I related to him respectfully. That’s when I got angry.

If you haven’t spent time with my son some of his choices will be unexpected. Some of them are inappropriate (recent episodes of dumping water on cars so he can see people use their windshield wipers come to mind), but many of them are just atypical, like sing-songy vocalizations and asking for hand squeezes. Some of them are actually helpful – organizing a disorderly display, or putting stray carts where they belong. None of these choices, or any of the other unusual things he might do in any given moment, make him less worthy of respect as a person. None of it changes that at the same time he is impulsive and socially awkward he is also kind, funny, smart, playful, charming, and eager for connection. He’s fully human.

When we look at another person and decide that being in relationship with them requires super-human attributes we are denying their humanity, we are cutting them out of the picture of community. Even the “difficult” people. Even the “weird” people. We are giving ourselves an excuse to not be fully human ourselves. We are hurting ourselves, but more importantly we are hurting them and all of the people who are blessed by their presence.

Different does not mean inherently difficult, or threatening.

Include people who are different from you.

Perceive the ways they can expand your perspective.

Let them season and deepen the flavor of your community.

Changes

Some of you have known this was coming for a while, but now we are ready to talk about details: I have resigned as the Pastor of St. Paul Evangelical United Church of Christ, and in mid-September, Christy and I will be moving our family to Cupertino, California, where we will be serving as the lead staff in a community home for three developmentally-disabled adults.

Our work will be part of an approach called the Family Teaching Model, which supports disabled adults seeking independence and community. These are individuals who have previously lived in a state institution, and now are being given the opportunity to live in local communities. Our work as a Family Teaching Couple will be to aid these individuals, and to welcome them into our family. We are excited about this model because it treats the men and women who are a part of it with dignity and respect. We believe that people with disabilities or impairments still deserve to seek the kind of life that they want to live, and the FTM does that. It’s not a new model; an organization in Kansas has been leading with this model since 1977, and is being used in a few other places. We believe that it is both a great approach to the need of supporting disabled adults, and we believe it is a way in which we can make an impact in the lives of others.

As I’ve been reflecting on the decision to make this change, I’ve been thinking a lot about Willie French. Willie was a man who was a part of St. Paul Church for several years before he passed away in late 2010. Willie found us because of his own initiative – he wanted to be a part of a church, and so he pushed his support staff (and former support staff who were still in touch with him) to help make it happen. They did, and so Willie became a part of the St. Paul family. When he decided that St. Paul was a place he wanted to be, Willie asked for people who would be willing to give him a ride to or from church. I thought that was such a beautiful, humble and yet bold way of behaving. He didn’t really know us yet, but he was willing to tell us how he needed our help. And several people stepped up and got him to and from church – although he would also walk the 2-plus miles to church if he didn’t have a ride! The people who got to know Willie welcomed him and became friends with him, which was especially beautiful to me because I knew that in previous settings Willie had been made to feel like a problem, like a hinderance or an embarrassment. Willie knew that he had limitations, but he was not embarrassed. People who took the time to get to know Willie were blessed by him. I was one of those people.

I believe that serving the Kingdom of God on earth as it is in heaven includes making sure people like Willie French, or my son Zach, or our new friends in Cupertino, are part of the community. 1 Corinthians 12:20-26 tells us that the people who seem to be “weak” (to some) are in fact essential to our well-being as a people, because of how they teach us to be together. In Matthew 25 Jesus teaches that those who serve others in need – be it the need for food or drink, a place to call home or a cloak to wear or someone to call a friend – are those who are doing the work of the Kingdom on earth.

That’s what I want to do – the work of the Kingdom. I want to inherit the Kingdom! I want to learn the lessons that the least of these have to teach me! I want to teach my sons the values of the Kingdom. So, my friend Willie, my son Zachary, many more friends we have made along the way in recent years (especially my JAF Maranatha friends!) and my King Jesus inspire me to go make a new community. All of us will be grateful for your prayers.

The Bible, Disability, and the Church

The title above is also the title of a book by Amos Yong that I’m reading today. Yong is a Pentecostal theologian, and the brother of a man with Down Syndrome. I want to share with you today the end of his first chapter, as it’s clarity was particularly gripping to me.

Some say that sustained thinking about disability is unnecessary because disabled people constitute only a very small percentage of our congregations. I counter, however, that this is probably because the church communicates the message ” you are not welcome here” to people with disabilities. Further, there are more and more “hidden” disabilities that are not easily noticeable, so how do we know that there are in fact few people with disabilities in our churches? Last but not least, the challenges associated with living with disability will be experienced by everyone if they live long enough, whatever medical aids and technological advances may develop. Some people might resist associating the struggles of being older with those of disabilities. My focus, however, is less on the why of our challenges than on the fact of our ongoing exclusionary and discriminatory beliefs and practices. Hence, I am suggesting that disability needs to be a present concern for us all, even if only because all of us will in due course have to confront the issues that some of us now live with every day.

Amen, brother Yong. I’m thinking of putting together a reading group, either in person or online, to discuss The Bible, Disability, and the Church later this summer; if you’re interested, let me know in the comments.

Finding Zuzu

My son Zach has 32 Zhu Zhu Pets. For the uninitiated, Zhu Zhu Pets are animatronic hamsters which, when activated, make a variety of noises (coos and purrs, as well as words and nonsense noises) and explore their environment; one can buy a host of accessories, as one would for a real hamster, but they will also zip around the floor, responding to various stimuli they encounter. There are dozens of distinct “characters”, each with a name, and unique coloring, markings, and phrases that they say.

Since I told you Zach has 32 Zhu Zhus, I probably don’t need to tell you that he loves them. He will set up tracks, and then line them up to all go through the track one at a time. He will set them all up on the dining room floor and then activate them, so that the room is over-run with furry, squeaking robots. And, when one of them ceases to properly function (the most common problem is that the button on their back, which activates them, will break) Zach is grieved. We are currently going through a mini-crisis, because Zach wants to replace Rocket (or Rock-it; I forget). Rocket appears to be out of production. Rocket’s not coming back, and Zach’s not happy about it.

But the amazing thing I wanted to tell you tonight is that Zach knows them all, by name. At bedtime, Christy told Zach to pick up all the Zhu Zhus and put them in a new plastic bin we have for storage. Zach dutifully moved from room to room, gathering up pets and putting them in the basket. Christy tried to join in helping him, but this proved problematic, because even after all of the pets seemed to be off of the floor, Zach kept searching, saying “Zhu Zhus. Zhu Zhus.” Finally, Christy showed him the basket, and together they inventoried all of the pets that Christy had added to the basket – he was still looking for those pets! As soon as the inventory ended, Zach went back to searching, now saying “Zuzu. Zuzu.” “We got all of them, Zach,” said Christy. “Zuzu. Zuzu,” said Zach. And then we remembered: there is a Zhu Zhu pet named Zuzu.

Josh remembered what Zuzu looks like (which was amazing in itself, since Josh doesn’t have any affection for the Zhu Zhus), and we all continued to search for a light brown puffball that looks a little like a porcupine. Sure enough, Zuzu was hiding in the bathroom.

Zach still has a hard time forming sentences, and really can only do it for things he wants or needs. Zach can’t always remember my name. Zach forgets basic safety rules, like ” no wandering away,” or “no walking into the street.” Zach has a hard time connecting with new people.

But Zach’s not stupid. He can look at a box with 31 of his pets, and he knows which one is missing, and what it looks like. And he won’t stop until all 32 pets are together in the box. Is that an obsessive behavior, or is he shepherding? I’m going to choose to see the latter, and I’m going to pray that it’s a little bit of the image of Jesus in Zach, a child of God.