too much spice

I've often wondered why certain things end: the novel Infinite Jest, the Clinique bonus bag period, and vacation. I'm back from Thanksgiving vacation and am a little bitter that it is over. There are a couple of good reasons for this feeling. First, we are still struggling to find Martin a tutor with whom we feel comfortable. Second, I visited the public schools today.

Now, let me beg forgiveness for some of the classist remarks you are about to read. Can I offer a treasury of merits that includes lots of service at food pantries, friendships with inmates, and even a year-long stint living with people people transitioning out of homelessness? Believe me, I'm not a total snob and feel completely convicted about my emotional response to the public schools earlier today. But here goes....

Wow, public school is a total assault to the eyes and ears. And I'm not even autistic. Everywhere I looked there was too much stuff: on the walls, on desks and tables. There were unmatching colors. There were mohawks (the hairdos, not the Indians). It was so loud. The cafeteria was like an echo chamber with 100 kids trying to be heard inside it. Even though the school district's new autism classroom instructor seemed terrific and even though the kindergarten teacher seemed perfectly competent, I simply could not imagine putting my sensory-sensitive kid in that loud, garish place. I might as well put him down in the middle of an Egyptian spice market and say, "Here, Martin, why don't you learn some more subtraction."

When I get this kind of feeling, I don't get the fight instinct. I get the flight one. I want to pack my bags for some state, any state that provides something better than this. It doesn't help that a friend sent us a recent op-ed from West Virginia on a similar subject:

http://www.wvgazette.com/Opinion/OpEdCommentaries/200911210272

Unlike us, the family in the article has no voucher option. When the public sector proved unhelpful, they paid out of pocket. Thankfully, we haven't had to do too much of that. But I live with the same anxiety the columnist expresses. You know how much an autistic kid needs and you know how much good it will do - and then you struggle to achieve even a portion of what you dream of. Makes me want to dive into the other worlds that novels present us or a pile of miniature cosmetic goodies. Or at least go back on vacation.

turkey

Martin is having one of the best trips of his life. During a stop in West Virginia, he played with two kids, learned new games, and slept in a bunk bed for the first time. At his grandparents' house in Virginia, he's jumped on the trampoline with cousins, read with his grandmother, and frequented the local children's museum. Despite the lack of schedule, new things to do, and constant stream of people, he's had only one fit. The rest of the time, he's been having fun.

Because Martin is having fun, I can relax. I can rest assured that he's having a good time. And I don't have to deal with the negatives: no tantrums to explain to cousins, no dirty looks from museum parents, no desperate searching for organized activities to fill long days.

Thanksgiving doesn't do much for Martin. He was uninterested in any of the special foods. He ate a piece of bread for Thanksgiving dinner. Because everyone else raved about the turkey and potatoes, Martin said that his bread was delicious. I, however, love Thanksgiving. And this year I got a happy and relaxing one for the first time in years.

frances

Then Frances spread jam on a slice of bread and took a bite.
"She won't try anything new," said Mother to Father.
"She just eats bread and jam."
"How do you know what you'll like
if you won't even try anything?' asked Father.
"Well," said Frances,
"There are many different things to eat,
and they taste many different ways.
But when I have bread and jam
I always know what I am getting, and I am always pleased."

Bread and Jam for Frances (1964)

Martin is obsessed with Bedtime for Frances. Though it could use some creativity in the verb department, it's a nice story. The illustrations are wonderful, done by the same artist who illustrated Little House on the Prairie.

Tonight I tried to get Martin to extend his collection of beloved books. If he loves a story about Frances going to bed, why not a story about Frances eating supper? Of course, the story provided my answer. Martin wants the story of Frances' bedtime because there are so many stories and he knows that he will always like this one. Who knows what might happen in a story about Frances and her supper? Who could say about Dr. Seuss?

At the end of Bread and Jam for Frances, the little badger's parents trick her into eating new food. Something must be different in the world of tiny mammals because I cannot trick Martin into anything. Really, what's wrong with only one or two things for supper? And what's so bad about loving only one book?

lois

Words like "heal" and "cure" spark furious debate in the autism community. Some folks claim that their children have been "cured" by therapies ranging from the physical to the behavioral. Others retort that autism is never cured, but rather is lived with and coped with through various strategies. Some people on the spectrum, particularly folks with Asperger's, say that they wouldn't want a cure even if there was one. The talents and weaknesses that stem from their place on the spectrum are integral parts of who they are. Who would they even be if they got cured?

I don't really talk about autism cures. When Jenny McCarthy comes up in conversation I stare down as if there is something really compelling on my plate or in my glass. I just don't want to think about. Even more, I don't want to argue about it.

But I did have to think about it during the last few weeks. My pastor has preached a series of sermons on episodes of healing in the gospel accounts. This morning, the series ended with an opportunity for people to receive anointing and ask for prayers of healing. I don't want Martin to be someone different than he is. But at the same time, I do wish he did not have to struggle to communicate. I wish he never had to be confused about what we say or expect for him. I wish it wasn't hard for him to navigate a school day. I wish he knew what to say each time another child asks him to play.

After the service, I went over to talk to my friend, Lois, who is fighting a very serious battle with cancer. In the three years I've known her, I have witnessed her incredibly generous and hopeful approach to people and life. Throughout her treatments, she has evinced admirable strength and courage. She was anointed today. Martin was not. I told her that I wasn't sure if it would be the right thing, if a cure for autism was the thing to hope for. She looked at me and said, "But wouldn't it be awesome for God to do it, to take away his difficulties?"

When I think about it, many of Martin's difficulties have subsided significantly in the last year and a half. He is happier now. He is frustrated less often. Tonight, he played with a house full of kids and had a wonderful time. That didn't happen two years ago. I've attributed this change to the hard work of therapists and teachers, to the countless hours of one-on-one time that it takes to make a difference in autistic kids' lives. But I shouldn't shut out the possibility that there has been something called healing as well. I've always thought of the work as mine and my husband's and Martin's teachers. But maybe God is working in this as well.

climb every mountain

I don't get to accompany Martin to speech therapy very often. Last school year, his tutor took him. This school year has been crazier. My husband and I have swapped off taking him on Thursday afternoons.

When Martin was first evaluated by his speech therapist - over 2 years ago - his speech was so limited that she could not even test him. She tried to evaluate him with a benchmark test for 3-year-olds and could not get him to respond to any parts of it. Those were some of our many days filled with bad test scores. IQ - 60. Fine motor skills - 2 years behind. Etc.

Martin loves to go to speech. We sign in at the front counter and he waits there for the therapist, refusing to take a seat like everyone else. The receptionists always ask him how it's going and what he's doing. "I'm waiting for Miss Beth," he replies. When he sees her, he runs down the hall and into the therapy room. I wait outside, although I can watch through a glass wall and listen with earbuds.

Yesterday, Miss Beth was trying to get Martin to recount a storybook in his own words. He did pretty well. She also tried to get him to describe objects on a card, which was harder because he simply wanted to name the object. Finally, she wanted him to draw something he did that day. She drew a picture of herself eating spaghetti as an example. Martin drew a picture of himself on a mountain and swimming in the ocean. We live in Ohio, so you decide whether not that picture was accurate.

Back in the day, Martin used to scream during speech therapy. He refused to take direction. It took months of repeated effort to help him realize that the activities could be fun. And now he's telling stories. And like Lake Wobegon, they might be true or not true. The point is, though, that he's willing to tell us something. I'm still getting used to the fact that Martin can sometimes tell me the things on his mind.

growth

Day three with the new tutor didn't start out very well. In his best imitation of an irate teenager or Civil Rights protester, Martin refused every proposed activity. He yelled. He fell to the floor. He ran away. He cried. It was not a good morning for our neophyte tutor. We supplied encouraging words, assuring her that Martin struggles against anything (or anyone) new. We told her to try the activities that already interested him rather than pushing new ones. It was not a good morning.

At lunchtime, Martin somehow realized that the world and his new tutor were not against him. The two of them went to the library for awhile. When they returned, they did some activities together. When it was time for her to go, Martin told her that she could take her coat off and stay longer. Three hours earlier he was yelling at her at the top of his lungs. He almost made the poor girl cry. And now, all sugar. I cannot figure it out.

Every day, I have the urge to cave. I just want to give in to Martin's demands. Not only because I know he's having a hard time, but also because it would make my life easier. It's easier to avoid new things than to go through the elaborate orchestration of making a new thing Martin-friendly. Even so, I have to do it. Martin simply has to get used to his new tutor. He simply must do new activities with her. There will be no growth otherwise.

psalms for autumn

On the drive home from the library tonight Martin sang another one of his wacky psalms. To make even a bit of sense of it, you must know that he had just picked up a banana at a kid's cooking class at the library. So here goes:

Raise up your hands to the green light,
Raise up your hands to the yellow light,
Raise up your hands to the red light.
I am waving the banana,
And it is Martin's banana,
And all the Christmas lights are shining,
Christmas is so huge,
And I am so huge.

This song is mostly nonsense, unfiltered response to the traffic signal, some food, and the newly installed Christmas lights all over downtown Wooster. At the same time, it is a sign of Martin's recent verbal leap. For instance, yesterday he disobeyed his new tutor and ran away from her in the college parking lot. When I asked him about it, I received this shockingly long reply that basically cohered with reality:

"Um, I was just holding Miss Jamie's hand and then I was not holding Miss Jamie's hand and I was running out to the street and I was not listening and then Miss Jamie she just grabbed my hand and I was not listening and I will get a time out."

This is a child who, a year ago, we were trying to get to answer yes or no questions 50% of the time we asked them. This is a kid who we were drilling every day with the hope that he'd take more than one turn in a conversation. We were yearning for something, anything sensible to escape his lips. And now we're getting paragraphs. They might be full of run-on sentences and repetitive, but so are many of my students' papers.

I'm just so amazed by it all. So amazed that we made it through the library cooking class, even if he refused to eat the food he helped make. So amazed that he knows what Christmas is after several years of the day being nothing but a nuisance to him because it changes a typical daily schedule. So amazed that he's reasonably happy and making progress despite all the ups and downs we've had with schooling and tutors this fall. You are huge, Martin!