comparisons

A lot of parents of autistic children don't even realize there's a problem with their kid until they have another baby and start to see the differences. This may seem odd to people without autistic children. How could you not know? How could the repetitive action, the hand flapping, the delayed speech, and general weirdness slip by any parent paying attention? There are lots of reasons that it does. In our situation, Martin said lots and lots of words. So we could answer "yes" to the pediatrician's questions about Martin gaining vocabulary. Martin also said sentences with two or three words. Again, we could answer positively that Martin was speaking in sentences. What we didn't know was that Martin could say words, but was not necessarily attaching them to any reference. He could say "door," but that didn't mean he knew the word denotes the wooden thing between rooms that opens and closes. We didn't know that when Martin said sentences, he was only mimicking sentences he heard other people say. He could not construct them on his own.

Now I have another baby. She is 16-months-old. I can already see the differences. She can ask for juice. She can say "hi" and "bye" to people at the appropriate times. The huge shocker: she can take directions. I carried her into church on Sunday, set her down, and told her to go to the nursery. I did all of this not really expecting her to do what I said. But she gave me a smile and headed into the hallway, around the corner, to the nursery. I was stunned.

I'm really undone by the fact that I have a child who seems to understand what I say. I have lived the last five years like one of those adults in a Charlie Brown cartoon. Wa-wah wa-wah. I can never count on the fact that Martin understands what I say. I can't imagine what it will be like to parent a child who can. I'm completely disoriented.

how I learned to stop worrying and love the doll clothes

I was nervous when I woke up today. While I figured we had a good chance at negotiating a compromise with Martin's teacher, I also felt that there was a non-zero percent chance that she would insist that he have a tutor accompany him to school for the rest of the year. That is something we simply cannot afford to do. So even though the chances seemed slim, the stakes were high.

The meeting went well. As with every meeting at a point of crisis, we all realized that we had - at least to some degree - misunderstood the other side. We came up with some strategies for helping Martin navigate the classroom environment. We talked about how best to use his tutor and what the conditions would be for her departure. It was a good meeting. I picked up Martin at the babysitter's a few hours later. He was covered with dirt after running around outside for hours. He looked forward to school tomorrow. We've tried to lay the groundwork for better behavior. He has a little homemade (ie. amateur) book with three stories. The first talks about putting books away before circle time. The second details how to wait on the porch before school starts. And the third talks about how to stay outside for recess until its time to come in. Martin read these stories before bed. Hopefully, it will sink in. It is probably too much to hope that they will work already tomorrow.

Today's meeting was a big relief. And it was another moment in which I realized I have to stop worrying. I will never be able to control how the world works. Sometimes, we'll be able to stay in school and sometimes we'll be asked to leave. There is only so much I can do. So tonight I decided to do give up, at least for a moment, all the ways I try to control the world. I decided to do something other than my job, my housework, my garden chores, or my church duties. I found an old dress of Sasha's and decided to make it into a doll dress. Sasha was given a Cabbage Patch doll for Christmas last year. Unfortunately, the outfit the doll came in was too lacy and pea green for my taste. (Sorry, Xavier.) So I cut away at this old dress of Sasha's and sewed up a jagged hem. The bloomers ended up a bit too big and the dress a little snug, but it was just right. It was the most useless thing I've done in weeks. I'll make another tomorrow as I wait for Martin to return from school.

a little eden

Here's our story of progress. A year ago, if Martin heard a song on a CD or DVD, he would learn the tune but could not pick up the words. He would sing garbled syllables that sounded like the song, but if you paid attention you would realize that he didn't know what he was saying. Today, Martin used his stuffed penguins to act out the "Sister Suffragette" scene from Mary Poppins. He sang all the words right. No gibberish. A year ago, Martin was only beginning to answer "yes" or "no" questions. Tonight, when someone asked him who was the 30th president, he promptly answered, "Calvin Coolidge." Last year, Martin couldn't tell us what he wanted, whether it was food or hugs or toys. A few minutes ago, he told us he wanted to ride his tricycle to the White House to see Barack H. Obama.

Since I have lived with Martin through this process of remarkable progress, it is hard to imagine that he might have to have a tutor accompany him to school again. I know he needed one last year. His tutor was vital to his learning the routine, interacting with other children. The tutor's work meant that the teachers could concentrate on kids other than Martin. But he's come so far. SO FAR. And tomorrow we must go to a meeting where we'll discuss Martin's future at school. Even though he's had a rough first two weeks, I know he can do it. It will just take a little patience and time.

While my husband and I are at this meeting, Martin will be blissfully ignorant of everything going on. He'll be at my daughter's babysitter's house. The sitter lives outside Apple Creek, which is as quaint as it sounds. They have a swing set, a sandbox, a garden, and lots of space to run around. For as long as I'm able, I want to keep Martin aloof from the world's discussions about accommodating autism or not. In fact, I wish I could withdraw from these conversations as well. Maybe I'll spend the meeting daydreaming about swings and gardens. Perhaps I'll think about running around with Martin on a late summer day, trying for a little while to push out the difficulties we have trying to fit in.

when can I move to New Jersey?

As I have written earlier, we participate in Ohio's "autism scholarship." The program is essentially a voucher system for parents who feel that the public school cannot provide adequate services for their autistic child. The funds are used to acquire speech and occupational therapy, one-on-one ABA therapy, or almost anything else needed to help bring an autistic child toward more typical verbal and social development. I am very thankful for this program. Our school system had no teachers or classrooms focused on autism. He could have one-on-one speech therapy only once a week. It was not enough.

With the voucher money, we pay for Martin's speech therapy and his tutor. Last year, the tutor accompanied Martin to a Montessori preschool. They did one-on-one work after school ended at noon. Our hope has always been that he could manage school alone. Last year, we transitioned Martin toward more time at school without his tutor's assistance. It went really well.

This year, however, has not gone so well. And part of the problem is that even if Martin can manage the school day alone, it will never look like the patterns of typical children. He will still cover his ears when the noise is too much. He will still needs breaks from the close contact with so many children. Even as the challenge of school helps him develop socially, it will never overcome the fact that Martin interacts with the world differently. And that difference is increasingly becoming a problem. With no teachers or classrooms focused on autism in our area, Martin has to be in more typical settings if we want him to experience school. And no matter how the teachers and administrators try, they never seem to be able to let go of their typical standards. They want Martin to respond consistently to verbal direction. They want him to learn routines quickly. While they would never say that they want him to be like everyone else, they want him to act like everyone else.

So I am ready to pack my bags for New Jersey, the state where insurance companies must cover speech and occupational therapy for autistics to the same degree they cover it for stroke victims. I'm ready to head out for the state with the most renowned public school resources for autistic children, with teachers and classrooms prepared to work with kids like Martin. But I don't live in New Jersey. It's hundreds of miles away. I live here and have no idea how to make the best of this situation. Anyone in NJ want to trade houses and jobs for awhile?

double dipping

I'm double dipping. I just got home from a church meeting that included a long discussion about children's church, a program that occupies kids from ages 2-7 during the sermon. While parents of young children support the program, there has been vocal opposition from older folks who think that kids need to learn to sit through church. The conversation was so troubling to me that I got home and wrote to the necessary parties. Here is part of that text:

"...Tonight I felt that more concern was being expressed for older members and their preference for tradition than for a person in the church who believes she is called to serve young children and the young parents who have claimed that the program helps them and their children. What do these older people have to lose other than a sense of satisfaction that things are like they used to be? I can tell you that those of us on the other end have a lot to lose. We have heard the message loud and clear that our children need to learn to sit in church. It has been communicated to us that this is more important to some people than the fact that we have some children in this congregation who (for medical and behavioral reasons) simply cannot do it. Do people not understand what the Rohrers, the Hershbergers, and my husband and I go through every day in our efforts with our special needs kids? To be told that I need to be more merciful to old people and their preferences for tradition - a tradition that has nothing to do with the gospel of Jesus - feels pretty bad. I tried hard to put these feelings aside during the rest of the meeting. But on the way home it began to hurt again. I wish that people understood that those of us with troubled kids WISH that our kids could sit in church. I WISH that sort of normality for Martin every day. But I can't make Martin do what the older people want him to do. Why can't anyone have some mercy on us and give up this constant whispering about children sitting through church? It is so demoralizing."

my cause

I've never been to an autism parents' group.You might wonder why I haven't availed myself of the advice and support of other folks in my situation. But I've never even been tempted. I tell myself that I avoid these meetings because they might not help since every autistic child is so different. That the meetings are probably bogged down by endless conversations about vaccines and diets, mercury cleansing and treatment controversies. While I would feel uncomfortable in any setting where those themes dominated, there is another important reason that I avoid these groups. I do not want autism to become my cause.

Let me admit something that might make me lose friends. I hate it when people promote a cause because it happens to affect them personally. For example, there's the person who sends internet petitions about library funding because their niece is a librarian. Or the person raising money for a walk-a-thon to fund kidney transplants because granddad just had one. While I am completely sympathetic to public institutions like libraries and the profound impact a family member's illness can have on a person, the whole thing smacks of selfishness to me. It's like saying, "This should be your problem because it is my problem. I didn't even know it was a problem until it affected me. But now it is the most important problem and I want you to think that, too."

I think I'm impatient with these promotions of causes because of the topics I research. I study two things: early American prisons and nineteenth-century Indian wars. These are not pretty topics. Yesterday, I was reading about Minnesota in the 1860s. A government official withheld food aid from native peoples confined to a reservation and then remarked that they could eat grass if they were hungry. In response, the Indians started a war in which hundreds of settlers, including women and children, were murdered. When you study stuff like that, life with an autistic child hardly counts as tragedy. I can't get on a soapbox about autism because every day I read about other human beings, other people in this country's history, who had their cultures destroyed, their freedoms curtailed, and sometimes their lives taken. I don't feel self-righteous about studying this stuff. I just think that these stories of injustice demand more of our empathy and activism than what I experience daily, no matter how heartbreaking it can be.

But maybe I have always wanted to take up causes for forgotten people - like criminals and Indians - as a way to tell myself that I am not as vulnerable as they are. Somehow, by studying them, I can insist that I am fine and have the time and energy to be concerned about someone else. So maybe I don't go to autism parents' groups because that would mean admitting my own vulnerability. Going to a support group might mean that I need someone else to take up my cause, rather than me being able to take up theirs.

the chart

One of the most controversial things about Applied Behavior Analysis, the therapy we use with Martin, is its use of rewards. Because autistic children don't have the inclination and/or the capability of doing certain things, rewards are used to prompt them. Parents, tutors, and teachers use stickers, treats, words of praise, and whatever else to entice autistic children to do the things they've never done before, like answer a question or use the bathroom.

We have little charts all over the place. There is a general chart with 14 pieces of Velcro. Right now, we're using it at school. Martin gets to put a smiley face button on the chart every time he correctly performs circle time or hand washing or any other school task. The bottom of the chart reads, "I am working for _____." The blank has another piece of Velcro where we can attach an icon for pizza or ice cream or family movie night.

Today, we have a new chart. It has the days of the week listed. Beside each day is a blank space that can be filled in with sad faces. The chart reads, "The Martin and Sasha Chart. I get sad faces when I hit or push Sasha. If I have no sad faces, I can have Mary Poppins." I don't know about you, but I never anticipated that I would be using Velcro, making charts about hitting people, and promising old Disney movies as a vital part of parenting. It feels so strange to make a chart like this. Why haven't all the old standbys worked? We've talked and reasoned. We've given the stern lecture. We've done time-outs and taken away favorite items. We've given a spank or two. But tonight, when I put the chart in his hands, Martin finally seemed to get it. He read the words. He looked at the space beside "Tuesday" and found there were three sad faces for the times he hit Sasha earlier today. He went around the house, repeating over and over, "If I have no sad faces, I can have Mary Poppins."

You might be wondering why we don't make charts for everything. I wonder this myself after moments like tonight. But it would be impossible. Who has the Velcro and poster board and markers on hand in the grocery store when you need to keep your child from knocking over the newly displayed Halloween pumpkins? Who has supplies at the moment your kid refuses to talk to - or even acknowledge - a person they've known for years? Sometimes you just want words to work. But they don't.

If all goes well, we'll be watching Mary Poppins at 7 o'clock tomorrow night.