Saturday, May 30, 2009


We signed up GL for Little League for special needs. He needs the exercise, he gets excited about sports, but most of the time he doesn't have a clue what is going on. We sent the paperwork in April. The form said his coach would contact us to tell us what team he was on. It gave directions to the park, and said that the little kids would be playing at 9:00, and the big kids (12 and up) at 10:30.

With game day fast approaching, I called the contact number to find out why we hadn't heard anything. I got a machine and left a message. No one called back. Two weeks before the first game, MB called again. She talked to the league president, who said they had just had the first coaches' meeting, and we should be hearing from his coach any day. She seemed to think this was not unusual, so we waited.

Today was the first game. They were supposed to issue uniforms, take team pictures, and play a game. Since we still hadn't heard anything, we wondered whether to show up at 9:00, or just before 10:30, when his game was scheduled. We figured with all the extra activity, and it being the first game, they would probably be running behind schedule, so why frustrate him further by getting there an hour and a half early?

We arrived at 10:15, and most of the teams were just finishing their games. By the time we found his team, most of them had left, and the coach was loading the equipment into his van. GL got his shirt and hat, which he was very excited about, but he'd already missed the game. And the pictures. Because of a lower than usual number of players signed up, they had moved all the games to 9:00. His coach was surprised that we didn't know. I said, "No one ever called us, and we didn't get anything in the mail."

He said there had been some last-minute changes, and GL had been moved to his team only the day before. He wondered why no one had contacted us when GL was first assigned to his original team. He pulled out the roster, found the team GL had originally been assigned to, and looked at the coach's name. "Oh." he said, "That explains it. Coach (name) tends not to do the things he is supposed to."

His new coach was very apologetic, but there wasn't a thing he could do. I was frustrated, but what could I do? GL was beyond frustrated. I asked him where he'd like to go instead. I thought he'd say McDonald's. I knew it wouldn't make it up to him, but it might distract him for a while. A first, he insisted he wanted to play baseball, but finally he said he'd like to go to the library and check out some books. On the way, I called MB and explained the situation. She thought I should take him for a snack anyway. I asked him if he wanted to stop for a snack, but he said, "No, I want to go to the library!"

I told him we could do both, and we ended up going to Kwik Trip for a bag of chips. Whatever works. Then to the library. It was okay except for a little yelling when I told him he had to wash the Cheetos off his hands before he could look at books. He quickly selected about twenty books, filling two large library bags. I usually let him check out as much as he wants, but insist that he carry it.

After we got home, we took our own pictures. When we came back inside, he started screaming. And hitting people. To keep him from injuring anyone, I made him go to his room. (Which wasn't easy.) He began pounding on the walls and screaming about blood. (There wasn't any. It's just something he routinely screams when he's angry.) And screaming threats, (I'm sure the neighbors heard; I'm not sure if they're used to it yet. At least none of them has ever responded. He used to yell out the window at passersby, "HELP! Emergency! Call 911!" They would just look uncomfortable and keep walking.) threats about what he would do to the whole family if we didn't let him out right now. (The door wasn't even closed all the way.) Or get off him and let him go. (There was no one in the room with him.)

He wasn't calming down. If anything, he was getting worse. I knew a change of scene would help, but first I had to get him calm enough to go out in public. And I'd already taken him to two of his favorite places. If I had to keep him entertained all afternoon, I would quickly run out of ideas and money, not to mention rewarding bad behavior.

So I pulled out my in case of emergency kit and called Grandma. She said that PBP could take him somewhere. Even going along with him running errands would keep GL happy and calm. But PBP had already left on his errands, and he refuses to carry a cell phone. He would be unreachable for at least three hours. And Grandma already had a houseful of grandkids scheduled to arrive in half an hour. Adding GL to the mix wouldn't help anyone.

Then GL said the whole family needed to play baseball. This was the first positive and possible suggestion he had made. It was worth a shot. So we loaded the family and his baseball gear into the car and drove to a local park. Saturday morning leagues were over, everyone had left, and we had the park to ourselves. The four of us played both sides. (Remind me some time to tell you about TS, a neighbor kid when I was growing up. He played both sides by himself.)

GL loves to play baseball. He has trouble remembering to run the bases in order, and he can't hit the ball without knocking over the tee, but he has a good time. His coach is going to have fun. After we'd each batted twice, and GL three or four times, and everyone had made it around the bases at least once, we went home. (Even with no opposing team, this was harder than it sounds.) GL was still upset, and continued to yell from time to time about this and that, but the constant screaming had stopped for now, he wasn't hitting anyone, and he wasn't pounding on the walls.

This series of events wasn't that unusual for him. When someone asks how we're doing, what can I say? If I give an accurate report, I sound like a pessimist. If I say things are "fine" or "about like usual," no one has any idea what life here is like. Not that I expect anyone who hasn't lived with this to fully understand. And by "lived with this" I mean "lived with this," not "got paid (or even volunteered) to deal with this for a few hours at a time, and then went home." But once in a while, I have to say something. Not because the situation is especially bad at the moment, but because I can't keep quiet for ever. Then I immediately feel guilty. Like I betrayed a secret. Like people will treat GL worse or be afraid of him now that they know how he acts at home. He usually manages to hold it together better in public. Like the old song says, "You only hurt the ones you love."

And I feel guilty because this wasn't unprecedented or shocking. It just slowly wore me down. After keeping quiet so long, there was no particular reason to let it out just now. I could have held it in longer. Not for ever, but at least a little longer. How long? And what would happen then? Who knows?

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Sunday, May 10, 2009

A Bookmark and Harsh Words

GL is a thief. I don't mean that in the technical sense that he stole one thing on a particular occasion. It bothers me when anyone applies such a label, especially to a child, after one or every instance of bad behavior. Calling him a liar after one lie, a cheater after he breaks one rule, or a thief after he appropriates, intentionally or not, one item belonging to someone else, fails to distinguish between an event and a habit, between one act and the sum of his character. It is an unjust accusation, and encourages a habit of that wrongdoing by making it his identity—in his own mind, and in the minds of all who hear it. It implies that he can't change. Even with a habitual offender, I would focus on a behavior that he can and should change. While character precedes action, repeated action is the means by which it grows, for good or evil.

That said, let's call a manually operated digging implement a spade. If you leave movable property unlocked, he will take it. He can't hold everything at once, so when he takes something, using it is less important than finding a place for it. He doesn't hide his swag because once he takes it, he doesn't expect the owner to want it back. The important thing, apparently, is that he selects a different location than where he found it. If I return it to its original place, he takes it back, sometimes to the place he had it, and sometimes to a different place. If I find something he has taken and want to be able to find it again, it is best to leave it where he put it—he might not move it before I need it.

It's not that he fails to understand the concept of property. He just believes that everything that is not nailed down is his, and anything he can pry up is not nailed down. Everything is a gift of nature for him to appropriate. He gets very angry if I try to take back something he's rightfully stolen. At one point he had a special interest in paper. He collected papers—receipts, bills, contracts, advertisements, newspapers, letters, any paper with writing on it—to carry around, stuff in his pockets, periodically pull out to inspect, and stuff back in his pockets, toy box, bookshelves, or closet. He would become enraged if someone threw out a Classified section he hadn't looked at in months, but throw my lecture notes in the trash minutes after stealing them because he had no particular use for them.

He still collects some papers, but at the moment prefers books and DVDs. We are a family of readers. No house would be home without a few thousand books. Every time he visits any other home, he borrows several books. He usually asks. Friends and family won't say no. So our house is also filling up with other people's books that he doesn't look at, but refuses to return. We try to sneak them back when we can. We request library books online, and stealthily send BB to pick up and return. When GL demands to go to the library, we hurry him in and out as quickly as possible. We don't go to Barnes and Noble any more. He thinks of it as a library. They have books, and you check out when you leave, no? If we say you need money to get books here, and he has a dollar, or ten dollars, or twenty-seven cents, it's all the same to him. He got a B&N gift card for his Christmas. He loves his new book, and we got him in and out of the store without incident, but it wasn't easy. You go to a place that looks like a library inside, look for books, go up to the counter where they scan your card and your books, but you can only take one book home?

There's always something to read in every room of our house, but finishing a book is a monumental achievement. With MB at work, I'm in charge of keeping the household running and home schooling BB and GL. Reading can only be done in short snatches. Even reference books rarely stay in the same place for long. Books are his favorite thing to collect, and the first thing he does when he picks one up is remove all bookmarks. I'm a faster than average reader, but it took me four months to finish a biography of Orville and Wilbur Wright because whenever I picked it up, I had barely enough time to find my place before I had to put it down again.

This afternoon I got out some books to prepare lessons. They weren't textbooks, so I had to search for and mark the parts I wanted to use. I had just marked the places and set the books on the table. I got up to get a pen, and GL swooped in, swiped my books, and removed all my bookmarks. "Don't pull out my bookmarks!" I said. "I'm sorry!" he replied, looking as puzzled and amazed as if I'd said, "Would you mind not eating this week?"

Serious readers will understand my dilemma. Forgiving him for pulling out my bookmark once, or seven times, or seventy-seven times, or seventy times seven, would be easier than facing the possibility that I may never, for the rest of my natural life, be able to mark my place in a book and return to it. Assuming I can even find the book. On the other hand, we are only forgiven our trespasses as we forgive those who trespass against us. He was truly sorry and had humbly repented, but at this point, amendment of life seems extremely unlikely.

"Don't pull out other people's bookmarks!" I told him, "That's a rule!" To him, if something is a rule, that's as serious as it gets. I struggled for a moment, but I really had no choice. I had to forgive him, whether he stopped taking my books and removing my bookmarks or not, and he would probably go on taking my books and removing my bookmarks, whether I forgave him or not.

Almighty God have mercy on us, forgive us all our sins through our Lord Jesus Christ, strengthen us in all goodness, and by the power of the Holy Spirit keep us in eternal life. Amen.

Papa Bear's Papa

PBP is mostly bald except for a little hair around the sides. He is of medium height. He is sixty. His eyes are brown. If he is reading, he wears glasses. He has a few straight gray hairs on top, but the sides are mostly black with curls around the edges.

His voice is loud and cheerful. He doesn't hear very well. He is usually quiet, but if you mention old cars, bike rides, or his grandchildren, he is happy to talk with you. He is generous and happy.

Thursday, May 7, 2009

A New Hope

No, sorry this is not a Star Wars post. Yesterday GL went to therapy. He has physical and occupational therapy once a week. He has made very good progress these last few weeks, but I was unprepared for what happened yesterday. After GL’s PT and most of his OT, his therapist came out to ask if he could have a snack, she also asked me if I wanted to join them. Thank you Miss S, if you hadn’t asked I may never had known what GL could do. After GL made a peanut butter sandwich (a favourite food which we have been making for years, but thought GL could not make for himself) He then started on the big task Miss S had for him. GL buttoned his own dress shirt !!!! This is a big deal for us. He had never done this before, I for one had given up hope that he ever would. Along with this thought came the thought that he would never be able to have a good job because he couldn’t even button his own shirt. God has done great things in this young man to do a task formerly much too hard for him. Now I know that just because he came dress himself, it doesn’t mean that he won’t have many trials and troubles before he can someday provide for himself. But it gives my Mama heart hope. With God & hope, we’ll be O.K.
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Sunday, May 3, 2009

All Those Who Suffer in Body, Mind, or Spirit

It's hard to find a church when you have a child with autism. Many of the symptoms are behaviors that look like those of an unruly kid with clueless or uncaring parents. Some people try to straighten him up beyond his ability. Others try to straighten us up. One church told us that we were welcome, but if he couldn't act like the other Sunday School kids, he shouldn't come. As one friend whose son also has autism put it, "I don't recall Jesus saying, 'Suffer the little children to come unto me—unless they're autistic.'"

Once they learn that he has autism and can't help these behaviors, some expect us to just keep him quiet and out of the way. I've had a hard time feeling like part of any church myself. It's hard to worship God while spending the whole service trying to make sure other people aren't bothered by the occasional off-topic interjection. Even in churches that welcomed us as a family, I felt he was only tolerated, not fully part of the church, encouraged to participate as far as he was able.

I was raised Baptist, met my wife through IVCF, and we were married in an Evangelical Free church. Through a long series of events, we ended up in a church that is part of the Anglican Church in North America. Think Episcopal Church minus the leftist politics. Many in our congregation are former Baptists, Pentecostals, &c., so our style of worship is a combination of several traditions. I call it Angli-costal.

It's a young church, both in the sense that it is a recent plant, and that most of the families have children under age 12. Worship is mostly family-integrated. Children six and under go to Sunday School during the sermon, but are expected to participate in, or at least sit through, the rest of the service. Children age seven and up are expected to stay through the whole thing. I think this is healthy. Children are challenged to listen, sing, and pray with adults. Adults have to learn to be patient with children.

GL is allowed to go to Sunday School with the little kids. Sometimes he gets upset, and starts yelling, usually at no one in particular. If the teacher thinks it's getting out of hand, she comes and gets one of us, we sit with him for a few minutes, and he calms down. Only one teacher has ever done this. Last week, he seemed a bit agitated before Sunday School, so I was expecting to get called out of the service, but it never happened. I asked the teacher afterward how he did, and he said, "Fine. He's a delight to have in Sunday School. He just says what everyone else is thinking, but is afraid to say."

GL sits with us through the rest of the service. We sit in the back. But after Communion, (we have it every week, near the end of the service) I slip out with him, and we go ride the trolley. It's kind of a tourist thing that makes a loop around the neighborhood. No big deal, but it's cheap, and he really likes it. That gets him out of announcements and the closing hymn when he's already been as quiet and still as he gets for as long as he can stand.

Early this year, they asked us if he would like to be an acolyte. That means he would get a turn every few weeks to carry in the cross or one of the candles before the service, and carry it out at the end. The hard part for him would be sitting up front for the whole service, and postponing his trolley ride until after church. We talked it over, and decided we would try it if they would let us play it by ear, and let him come sit by us during the service, and just process in and out. Everyone was agreeable.

The first time he was scheduled to serve, I had one of the Scripture readings, so I was right behind him going in and out, and sat up front with him during the service. He wiggled a bit and asked about the trolley a few times, but on the whole it went pretty well.

Last night we had company and got to bed late. This morning, just as we got to church, we realized GL hadn't had his morning meds. MB thought I had given them. I thought she had. When we walked in, we learned that both GL and BB were scheduled to serve. Someone had forgotten to email us the schedule. With fear and trembling, we decided to let them try. Not that we were worried about BB.

They processed in and took their seats with minimal fuss. We somehow all forgot about not having him sit up front. They did fairly well in the early part of the service, although I had to slip up behind them once to remind GL to be quiet, and once to remind BB to stop telling GL to be quiet. When the Sunday School traveling music started, GL hopped up and went tearing down the aisle. No one had remembered to tell him he was supposed to stay up front, so we let it go.

He returned to the front after Sunday School. After a couple of small outbursts, ("I want to go ride the trolley." and "Stop smiling at me!") I slipped behind him to see if I could calm him. He kept talking about the trolley, but more quietly, and whenever I offered to take him, he insisted that he wanted to stay for Communion and the recessional. If you think he was too much of a distraction, note that about half of the children age 4 and under were crawling around under the chairs. He couldn't quite calm down, but he didn't want to leave, and as long as I was there, he kept it mostly under control.

So I knelt behind him, put my hand on his shoulder, and prayed. And wept. Through the rest of the service. Afterward, several people commented on how well he did. The Catechist, who is in charge of the acolytes, asked if we wanted him to continue to serve. I said that I didn't want him to be a problem, but we would like to include him as far as he was able, and that would vary from week to week. And also that he missed his meds this morning. He said, "Oh, don't worry. He was operating at a disadvantage. We're glad to have him."

Comfort and heal all those who suffer in body, mind, or spirit; give them courage and hope in their troubles, and bring them the joy of your salvation.

Lord, I believe; help thou mine unbelief.

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