Monday, August 31, 2009


Tonight, I dived head first, on my stomach, down a big curly slide. I did not do this as an act of youthful exuberance. I did it to catch Sasha, my one-year-old, who Martin had just dragged down the slide with him.

Since school started, Martin has been a behavioral mess. Tantrums. Tears. And lots of aggression towards Sasha. I know it is all a sign that he is stressed out about the changes in his life. He wants the comforts of summer, even if they bored him from time to time. According to Martin, there are just too many people with too many expectations of him. He is fighting back. And Sasha, since she hardly weighs 20 pounds, is a very easy target.

There is no easy way for me to convince Martin that his tantrums won't be effective. We're going to keep him in school. We're going to go to speech therapy. We're going maintain rules like no pulling your sister down slides. I can only hope that 1 week from now, 2 weeks from now, a month from now, it will all be a little easier.

Like development among typical children, Martin sometimes experiences regression before big bursts of forward movement. When we're in a bad place, I sometimes tell myself that this is just the backward movement before something great happens. But right now, I can't help but think that we're in no natural pattern, we're in a situation we brought upon ourselves. We didn't anticipate how the school changes would affect Martin. We didn't do enough to help him manage the changes. And while my husband and I have lowered our expectations over the past week, it's been hard to get others to do so. I'm afraid that if we don't cut the kid some slack, this behavior will only get worse. The regression will be more than it ever needed to be.

I have a kid whose language already registers as more than a year (if not two) behind his peers, whose state-mandated IQ test measured him as significantly mentally retarded, and can rarely do things like go to another kid's birthday party. I take responsibility for the way I contributed to Martin's "lack of flourishing" over the last week and a half. But I'm not in charge of everything. I'm trying desperately to get lots of other folks to scale back their expectations, to let Martin ease into the new schedule a school year brings. He's so far behind in so many things. It would be a shame if we - inadvertently - made it hard for him to move forward.

Sunday, August 30, 2009


There are certain things Martin will not help us do. When we have tried to cut his nails, he puts up violent protest. After months and months of miserable efforts, I began cutting them while he sleeps. He won't cooperate with haircuts either. In order to give him a quick buzz, we play a movie, strap him into the old highchair, put some sort of candy into him, and try to get it over as quickly as possible. Some autistic kids have sensory issues with things like clothes, but Martin seems to have issues with the way humans beings have to touch their bodies and cut their bodies to keep themselves from looking like Crystal Gayle or that guy in the Guinness world record book who has fingernails so long they curl around several times.

So much of childhood involves adults directing your body. Adults grab children's hands when they cross streets. They change diapers and wipe bottoms. The put food in mouths and wipe up faces. They scrub dirty necks and feet. All of this usually happens without the adults ever asking. I think of all the times I put my hands on Martin and then begin to wonder why he only reacts negatively when I'm cutting nails or hair. I direct his body on so many occasions every day.

Tonight something happened that made me think that I need to back off a little, be less directive of Martin and his movements. We arrived early for an ice cream social at church. Folks were setting up ice cream makers and tables with all the fixings. Others started to put up long tables for people to sit at. A few began to set up chairs as well. Martin watched them for a moment and then began to help set up chairs. He put up chair after chair. If I had asked him to do this, it never would have happened. If I had tried to stop him (if for some reason I thought he shouldn't be trying to lift heavy chairs), he would not have stopped.

I realized once again that Martin is his own person, with his own body, and he needs more room to figure out what he wants to do with himself. Of course, there are limits. I've mentioned before our frequent efforts to keep Martin from running into the street. But our concerns about the street sometimes spread into other areas, into much more low-stakes situations. Martin won't learn to use his body in good ways unless we give him more spaces like tonight. And tonight was really an accident. Lucky for us.

Friday, August 28, 2009

sunshine day

Today got better. With the help of my husband, Martin made it through the whole day of school. After a few conflicts in the first five minutes, Martin had a good time working with his new tutor. And we have a lead for someone to accompany him to school temporarily. These are victories. But maybe Martin put it best when he offered up another one of his sidewalk psalms:

The leaves are on the trees...
And the something of the something is on the grass...
And we are walking...
And we will go to the zoo tomorrow...
A spider is not an insect...
And we're turning to the left...
And we are walking together.

At least for today, things are better.

Thursday, August 27, 2009

the nadir

I'm not sure if it was the nadir just for me or if Martin felt it as well. School was really hard today. Despite the brand new picture schedule I made that details all the steps of the school day. No matter that I was there all day to help him through the transitions. School was hard.

Other kids definitely noticed. Two little girls (who will someday probably be tyrannous cheerleaders) laughed at Martin when he couldn't figure out how to get around them in the hallway and he got all giggly and muttered "excuse me" over and over. At lunch, a five-year-old eating a hot dog and goldfish crackers told me that "Martin doesn't know how to do school." Try having a a five-year-old eating processed food and wearing a Spiderman t-shirt tell you how the world is. Believe me, you won't feel good afterward.

I am constantly amazed that Martin can have so much trouble and then - a few minutes later - be just fine. He also struggled today when his new tutor came over to do activities with him. He yelled. He ran away from her. But when she was ready to leave, he gave her the loveliest smile and goodbye. He was all sweetness and light. This continued until bedtime when he came to me and said, "Give me a hug, middle-sized bear." (He's really into the Three Bears right now.)

It's pretty hard to reflect on these rough experiences of the past few days. I feel weighed down by them. I'm not sure how I'll escape them. I'm willing to pay top dollar for spells and tricks that appease the gods of nursery school.

a soft day at school

Martin had a tough day at school on Tuesday. He cried a few times, but made it until 2pm dismissal. Wednesday was worse. At 12:30, I got a call to come pick him up. He wouldn't (or more likely couldn't) follow the basic class routine and had a series of meltdowns. By the time I picked him up, he was sitting happily in the principal's office. "Did you have a hard day at school," I asked him. "No," he replied. "I had a soft day at school."

Martin's teacher, who has been terrifically understanding, would like him to have a tutor until he's able to navigate the classroom by himself. She thought it would be necessary for only a few weeks. This would be fine with me if we had a tutor available during school hours. Martin's tutor from last year quit a few weeks ago to take a full-time job. His new tutor works with him in the afternoons. She's a college student and can't come to Martin's school during the day. We're calling around looking for temporary help, but haven't found anyone yet. So if Martin is going to school, it looks like I'm taking him.

I'll be perfectly honest and say that I don't feel like stepping up to the parenting plate today. I know it's necessary and that it might even be fun, but I had other plans than spending 5 hours a day at an elementary school today and tomorrow. Yesterday, I turned in a big piece of work. I had a deadline looming and I met it. I was planning to take off today and tomorrow. I wanted to go to the Y, read magazines, maybe cook something. I wanted to futz around.

Sometimes, I am so jealous of the other parents dropping off their kids at school in the morning. They don't have to worry whether their kid understands what the teacher is saying. They can assume that their child can learn a classroom routine. They will never get a call telling them their kid must come home early. I know everyone has problems, but sometimes I feel like Martin's issues are so obvious and public that his problems seem bigger. We cannot go through life in the way we're supposed to in this society. We cannot pretend that everything is OK.

Tuesday, August 25, 2009

colors and numbers

I do not understand Martin's brain. Case in point. Martin's favorite book right now is called "Emily's First 100 Days of School." It tells of a rabbit in her first four months of kindergarten. There is a little vignette for each of the 100 days. Not only does Martin have the entire book memorized, but he also knows what color the numbers are. Yesterday and today, he has spent time making little cut-outs of the numbers. He is very specific about which color he should use for each number. When we open the book, we see that he has chosen the right one.

I'm not sure if he is synesthetic, or a person who has one sort of sensory experience which automatically triggers another sort of sensory experience. ( If so, he would have grapheme-color synesthesia, where a person associates numbers with colors. People whose brains work in this way see entire equations in color. It's kind of psychedelic.

This weirds me out because I have a very basic brain. I'm a smart person, but I wouldn't characterize myself as any kind of genius. I have stuff in my brain because I put it there. And when I need that stuff, I have to work to get it out. Martin's brain has a number of facilities that seem practically automatic. He memorizes massive amounts of material with no effort. He has relative pitch (a close cousin of perfect pitch). He figured out how to read without anyone actually teaching him.

I wonder what kind of person Martin will become as he figures out that he has these facilities and others do not. Will he be impatient with those of us who can't do math in our heads? Will he think the rest of us are stupid? Or will he want to be something called normal, not gifted with mental facility but blessed instead with the ability to hold a 5-minute conversation?

Monday, August 24, 2009


Well, it was a great day at school. From the moment I dropped him off until dismissal on the playground, Martin had a wonderful day. Thanks to everyone who thought about him, said a prayer for him, or sent him good vibes from afar.

My nervousness about the first day came not only from regular parent jitters combined with the extra anxieties that can go along with having a special needs kid. I was also apprehensive about today because my husband and I made the choice to have Martin try to go to school this year without the help of a tutor. We took a gamble, hoping that he was ready for this next step toward life in the mainstream. Ever since we made that choice, we've wondered whether we did because Martin was ready or because we wanted him to be ready.

Today going well is no guarantee of a problem-free school year. But it took a load off my mind. And it gave me such pleasure to see Martin run around the playground with all the other kids. He didn't want to leave. What a great day!

Sunday, August 23, 2009


At church, we sit in front of the widows' pew. I'm not sure how we got to sitting there every week (or, for that matter, why there is a pew where all the widows sit). But now it's our weekly spot. While most of these women are lovely people, there is one who is a bit grumpy. I'll call her Julia. In different settings, I have heard her complain about the way young people don't go to church and that things are not as they once were. She has a tendency to steer conversation away from the topic at hand. She also goes on and on. For these reasons, folks at church get a little impatient with Julia. I'll admit that I have gotten a little irked with many non-sequiturs.

Julia has every reason to be grumpy. She grew up in Holland and was run out of her home during World War II. After coming to America, getting married, and starting a family, her husband did some thing awful. It's still whispered about in this small community. I honestly don't know what it was. But it must have been bad on his part and devastating for Julia. Really, I can't blame her for being grumpy. She hasn't had an easy life. Now, she lives in a retirement community not far from our house.

Sometimes, Martin's tutor takes him to visit some of the widows at the nursing home. Martin and his tutor draw a bunch of pictures and deliver them to the older women. Martin has visited Julia on several occasions. Last week, on their visit to the widows, Martin asked if he could take Julia out for ice cream. Martin, the tutor, and Julia all went out together.

In my experience as a parent of an autistic child, I have found that older people can be the most unforgiving of bad social behavior and the most likely to think that Martin is simply retarded. Maybe autism is too new and strange for them to get used to? I'm not sure. But I have had moments where older people look at Martin and me, silently seething at the loud child with a mother who can't or won't control him. I have had times when old people ask me if Martin is "just slow."

This morning, Julia tapped Martin on the shoulder. "I have something for you," she said. She reached deep into her humongous purse and pulled out a big plastic ruler. On it were pictures of the presidents from Washington to Clinton. "I found it in the thrift store," she said.

I couldn't believe that this. I'm always thought of her as the grumpy old lady who you talk to and wonder if she is capable of listening. But this woman remembered that Martin liked presidents and picked up a gift especially for him. I underestimated her capacity to pay attention and express caring for others. In the end, I guess I'm the grumpy and insensitive one.

I guess I'm gonna have to try to change that.

Friday, August 21, 2009

Martin - the musical

Martin is leading an unstructured life in the final days before school begins. Today, he and I strolled over to the college library to find something interesting to do. As soon as we got out the door, Martin began to sing. Every word that came out of his mouth was part of the song. In fact, I think he sang every word he thought. Here's a sample of his lyrics:

We're walking on the sidewalk...
I am the men...
You are the women...
And it's starting to rain...
And I'm singing in the rain...
And I forgot my raincoat...
And my boots.

We're walking on the sidewalk...
Praise God...
Oh, the Jesus...
Praise the Lord...
I am the men...
And you are the women...
There's Abraham Lincoln...
And he's got some pennies...
And we're at the college library...
Now, I'm quiet as a mouse.

I'm not sure what to make of this moment. I think the whole exercise made Martin really happy. And I got a kick out of it, too. Not just because it was funny. Not just because I now had a sense of what post-modern psalms might be. I was thrilled because Martin wanted to get all his interior stuff into the exterior world. He gave words. He gave music. He offered all the things that he could so easily keep and cherish and obsess over in his own little brain. He shared them with me.

It felt like such a gift.

Thursday, August 20, 2009

school starts

Tonight we visited Martin's school for an open house. The official start day is Monday. He has a calendar for counting down the days. He's been ready to go since August 1.

Martin has had, shall we say, an "uneven" school career. We signed him up for preschool when he was 3. This was before his diagnosis. We took him four days in a row, four awful days, before the school told us that it wasn't going to work. I felt like someone was breaking up with me. Or breaking up with my kid. It was terrible. Martin's diagnosis soon followed.

After that, he was eligible for a special-needs preschool classroom at a local public school. He rode the bus. He liked his teachers. He received speech and occupational therapy once a week. Martin enjoyed himself and I'm sure he made some gains. But at the end of that year, he was still in diapers. He still couldn't tell you how old he was. In fact, he couldn't answer a single question you asked him.

This past year, starting just after his 4th birthday, Martin attended a Montessori preschool. He was accompanied by his tutor. She was essential for him to learn the classroom routine, to handle social interaction, and deal with his frustration. He never could have gone without the tutor. By the end of the year, though, he was working on his own. The teachers handled any problems. They were prepping him for this year. They were preparing him for Monday.

Monday is the first day of school. Martin is going by himself. As I said earlier, he can't wait. But I'm a little nervous. I think he has a 50-50 chance of making it through the first day without some sort of major meltdown. I know he's capable. But any little thing could throw him for a loop. Maybe someone will sit in his spot. Maybe another child will use the materials he's been waiting to get back to all summer. Tonight, he noticed that the circle on the carpet was marked with red tape, not blue tape like last year. For Martin, this could spell disaster.

If you're the type of person that invokes a higher power, dwell on Martin for a moment on Monday morning. We've done all we can to prepare him, but there are no guarantees. We could have four awful days followed by a polite invitation to leave.

Wednesday, August 19, 2009

take that, world

A shout-out to my dear friend, Katie Lofton, for passing on a great article by economics professor, Tyler Cowen. You can find the article, called "Autism as Academic Paradigm," at:

I'll offer two quotes to whet your appetite:

"It's been suggested, for instance, that autistics don't care much about other people, or that autistics lack genuine emotions or are incapable of empathy. The more likely truth is that autistics and nonautistics do not always understand each other very well. It's odd that the people who make this charge so often, in the very act of doing so, fail to show much empathy for autistics or to recognize their rich emotional lives."

"When it comes to discourse on the autism spectrum, we should be humane, respect human difference and individuality, respect the need for possible assistance, and recognize the diversity within the spectrum, and all that without assuming that nonautistic ways of viewing the world are always the right ones."

While I loved so much about this article, especially the arguments in the quotations above, I recognize how lofty the author's goal is. I'm the mother of an autistic child and I struggle with the worldview Cowen asks his readers to have. How much more difficult for those whose only interaction with autistic children is when they scream at the grocery store? As with my health care post from a few days ago, I keep coming back to same question. When will we start loving the people we have a hard time loving? And when will we realize that it's on us - not them?

Tuesday, August 18, 2009

tom selleck

Before I had children, I knew that parenting would sometimes be hard. I figured that sometimes I would be frustrated, confused, wondering if I was doing the right thing. I never, ever anticipated that my life would sometimes look like a scene from "Three Men and a Baby." I never, ever thought I would be sitting at a dinner table with two screaming children, something cooking over on the stove, and the ground around me covered in watermelon and graham crackers. Really, just hand me the Hawaiian shirt and the mustache and I am Tom in that awful movie. Not the overly positive Steve Gutenberg character. But Tom. Just as strung out. Just as inept. Just as ready to throw in the towel.

Most days I try to balance the bad Martin stuff with the good Martin stuff. The meltdown in the bookstore gets canceled out by the good behavior in the doctor's office. The refusal to brush teeth outweighed by a polite word to a stranger. The smackdown of little sister....well, I'm not sure I can find an offset for that. And that's the problem. There are days when the bad so overwhelms the good. For things to even out, I'd have to start adding "didn't pee his pants" and "didn't run in street" to the good column. And then I have to remember, those things DO belong in the good column. They are things that Martin learned. They were difficult for him and he did it. And it makes my life and his life better because he did. So then the good does overwhelm the bad, even on days I feel like Tom Selleck.

Monday, August 17, 2009

which rogue state are you?

You know all those Facebook applications that figure out things about you: your ghetto name, what theologian you're most like, the historic couple your relationship mirrors, the Bible verse that fits you best, etc. I like to think up Facebook applications that would never make it, such as "Which rogue state are you?"

I was thinking about this application tonight as Martin and I strolled around the college campus after an unsuccessful supper (grilled cheese and watermelon, which should have been easy). Martin has a pattern he follows on visits to the campus. He walks past my building, balancing on the sidewalk edge at a particular point. Then he visits the Abraham Lincoln statue, asking it if it has any pennies. Then he tries to enter the library. When it's open, he's thrilled. He climbs a spiral staircase to the elementary education section, which is full of children's books and classroom resources. He takes off his shoes and gets out a bag of puppets to play. This is all great, unless the library is closed. And it was closed tonight. It's so disappointing for him. He just wants to live his life and so many things get in the way. It's like the childhood version of UN sanctions.

If Martin were a rogue state, he'd be Cuba. He's his own person, self-sufficient in some respects, but clearly underdeveloped in others. His world is sometimes great and sometimes not so great. Kinda like Cuba. I mean, all the kids have shoes in Cuba. People have medical care. But it's got problems, too, or so my friends in Miami tell me. I compare Martin to Cuba because he's got his own way of being in the world that is unlike all his neighbors, kinda like Cuba and the western hemisphere. He's not a rogue like Sudan, which wars against its own people. Or North Korea, which has a deranged person at the wheel. Martin is like Fidel, minus the camo and the beard, living out an alternative to the way the rest of the world is organized.

Which rogue state are you? I think I'm Libya, but mostly because I like Khadafi's sunglasses.

Sunday, August 16, 2009

we are all in of milk

Martin struggles with prepositions. His tutor works with him on concepts such as under, between, through, during, etc. They play a game called "Prepositions Bingo," which features little pictures of a dog and a barn. Martin has to figure out the relationship of the dog to the barn. Is he on top of it? Under it? Is he running around it? The rest of us just absorb this form of language. Somehow, Martin's brain doesn't. It has to trained. Well, on some days it feels like it has to be forced.

Martin's difficulty learning language results in all sorts of goofy sentences. And you can't laugh because the poor kid can't say what's on his mind. He's confused by aberrations of grammar. Homonyms confound him. Even if his locutions are funny, you can't laugh unless you're the kind of person who laughs when people fall down.

Awhile back, Martin insisted that he was not my son. But he meant that he was not the sun. Tonight, he wanted a drink. He asked me if we were all out of milk. I said no. Satisfied, he said, "We are all in of milk." Is that sentence logical? Yes. Is it correct? No.

Martin's brain wants a world that operates by the rules. All toilets are for peeing in, not just the ones that aren't on display in Lowes. Every day should be a day for going to school, not just those between September and May. Tell the whole truth all the time, not adjusting for context or audience or whatever. Autistics are dying for the world to be consistent. Just life, rolling on, day after day, in which people do what they are expected to do. It's like their brains never need a break, never have to rest.

But even our language doesn't work that way. It breaks its own rules. And all of us typicals would die without sick days and vacations and the chance to be inconsistent at least once a day. Which world is better? Anymore, I don't know.

Saturday, August 15, 2009

town hall style

With all the screaming and yelling about death panels and unplugged grandmothers, an important news items almost slipped by me. The state of New Jersey just became the 15th state to require insurers to cover services for autistic children. ( These services include occupational, speech, and behavior therapies. The article in the Times notes that the high costs of these services is balanced, if not outweighed by eventual savings because kids with early treatment move more quickly into mainstream. They spend less time in expensive special needs classrooms.

Insurers don't like autism. There is no pill for it. The therapies needed are expensive. I have OK insurance through my job at a small liberal arts college. With my plan, speech therapy is covered if you have a stroke, or have a tongue malady, or if someone messes up your face. Speech therapy for autism is not covered. However, that does not mean that the costs of Martin's treatment aren't spread around. They're just spread out differently. The public schools handle most of the care for autistics kids. Once diagnosed by a doc and evaluated by a school administrator, a child has the right to services through the public schools. And when schools struggle to provide these expensive services, states sometimes step in so that they don't get sued. Ohio, for instance, has a $20,000 voucher program. We are in this program (hilariously named the "autism scholarship" because, congratulations, you're kid is autistic). It's the only way to get the services Martin needs without bankrupting ourselves. The public school simply couldn't provide enough services to help him progress significantly. So we take state money to purchase all the therapies I listed above.

To the citizens of Ohio, thank you. I thank you for your willingness to shoulder this burden with me. You each pay $1.75 a year to help Martin get out of special ed and into regular school. You pay less than two bucks annually so my kid can have a shot at a normal life. To my insurer, J. P. Farley, I hope the movement in New Jersey comes to Ohio soon. I hope Obama's plan goes through so you can't keep turning down people who have coverage (and pay steeply for it) and need treatment.

Why can't people against health care reform see that they are paying for everyone's health care already? Just in different formats? More important, when will we be the kind of people who are willing to embrace - rather than protest - the opportunity to take care of each other?

Thursday, August 13, 2009

can i have a pig?

Martin is a terrific reader. Although he's going into kindergarten in two weeks, he already reads like a first grader. When we go to the library, he picks up biographies of presidents, Curious George books, and easy science primers and reads them easily. It's a real treat to see the pleasure he gets from reading. He likes books on CD best. He runs around the house imitating the voices. Lately, he mimics the main character in "Diary of Fly."

The question is how much of what Martin reads does he understand? Does he know what the words mean? Does he get the action of the story? Does he understand the different characters? Or does he simply memorize the sounds and repeat them back? This is a huge issue when trying to assess what autistic kids know and don't know. For instance, Martin once memorized an Animaniacs song that lists every country in the world. Part of the song goes really fast, so fast that there are moments that it sounds a little jumbled. If you actually know the names of the countries, you can figure out what they are saying. If you don't, it's just jibberish. For a few weeks last winter, Martin went around singing something we couldn't figure it out. Then we realized that he was singing the fast section of the Animaniacs song. When he sang the slow section, he got the country names right. When he sang the fast part, he just repeated the mixed-up sounds from the song. He couldn't tell the difference. He had no idea that he was singing one part right and the other part wrong. So did he really know the nations of the world?

I've wanted to introduce chapter books to Martin for awhile. We've debated whether he's ready, whether he'll have any idea what's happening in a book with a more complex plot. I've tried to read the first chapter of "Charlotte's Web" to him a couple of times. He hasn't registered much interest. Tonight, I tried again. He sat through the entire first chapter, where Fern saves the piglet Wilber from death and then feeds him breakfast from a bottle. I finished the chapter and looked at Martin. I fully expected a nonsequiter such as "I want some cereal" or "The zoo animals are sleeping." Instead, he turned his face to me and said, "Mama, can I have a pig?" He got it. HE GOT IT!

Wednesday, August 12, 2009


Martin is kinda popular. Yesterday, he got two pieces of mail. A postcard of a lighthouse from a school friend and a note from our pastor. He also had two buddies over. The three boys played for quite a while. For a long time, the two boys following Martin while they all chanted/yelled "From A to Z." A lot of people love Martin and want to play with him, even though he won't answer questions, doesn't play the games being played, and can be so weird. I sometimes wonder if it's because he is cute.

I think the tyranny of beauty rules over us in such bizarre ways. Sometimes, it's obvious. As I heard a commentator ask the other day, "Would we really be listening to Sarah Palin if she looked like Golda Meir?" We all hear about studies that show attractiveness benefits people in job interviews. I wonder if the acceptance Martin receives is aided by his cute little face?

Actually, I don't wonder. I know. I've seen it played out. And I'll complicate this statement by adding that beauty combines (insidiously) with class, education, and medical classification in this matter. Here's why I say this. I know a bunch of boys around Martin's age. Several of them have struggles ranging from physical, to developmental, to behavioural. I find that the community is more tolerant of the boys who are cute, have a diagnosis, and come from middle-class families. The boys who look a little rough, come from tougher homes, and have yet to have a doctor pay enough attention to them (even though I know some parents have tried to get them evaluated and have been turned away) get little in the way of patient love. People will openly state their frustrations with these kids, in essence blaming the kids for their own tough situations. I've heard people say that community events are easier when they are not around.

Sometimes, I try to interject. I say things like, "Well, let's cut him some slack. I know how hard it is for kids with troubles to live up to everyone's standards." But folks always want to tell me that Martin is different than those troubled, lower-class boys. They have actually said, "Martin's not like them." All I can say is "Yes, he is." Further, aren't we all like those boys? They're in our community so they are ours and we are theirs. Cute or not. From stable homes or not. Diagnosis or none at all.

Tuesday, August 11, 2009

part 1 and part 2

Part 1 - This is the funny part

Some of you who follow Facebook might know that Martin did something very odd on Saturday. While shopping at Lowes with his dad, he needed to go to the bathroom. My husband asked where the restroom was and told Martin to follow him in that direction. But Martin went a different way. My husband followed, which is typical for us. We follow Martin around a lot of places. Martin rounded a corner and my husband lost sight of him for a little bit. When he came around the corner, he saw Martin perched upon a display toilet, shorts around his ankles, taking a whiz. Yes, you can laugh. Laugh really hard. It's really funny.

Part 2 - This is the unfunny part

When Martin does something odd in a public place, our experience of that moment often depends on bystanders' reactions. In a perfect world, the red-vested Lowes employee would see Martin, register a little shock, get a wry smile on her face and say, "Well, THAT just happened." We would offer to help clean things up and all would be well in a few minutes. This is what happened when poop came flying out of Martin's diaper and onto the Macy's shoe department floor when he was a baby. Instead, a red-vested Lowes employee came up to my husband and shamed him. He insisted that the toilet would have to be "junked." He said this word, "junked," over and over. It seems that he just wanted my husband to feel bad. It's that classic internal litany reserved for parents of bad children in public places: "You need to get control of your kid. This is your responsibility. And since I won't charge you money, I will exact your dignity."

I struggle about revealing Martin's diagnosis to strangers. I don't want to explain away bad behavior. We're working on these behaviors every day. But sometimes we just want people to give us a break. To offer to carry our grocery bag instead of giving us condemning looks. In return for this sympathy, I have something I can offer. I can reveal Martin's status in ways to make other parents feel good. Sometimes, at the library, Martin's reading ability catches the attention of other parents. In this child-competitive culture, I get comments about how lucky I am to have a kid who reads so early. I usually say that he's autistic and his brain is specially wired for this sort of thing. It was no parental accomplishment.

Dear Lowes employees: I'm ready for some grace from the other direction.

Monday, August 10, 2009

mom is great

We had a Bill Cosby comedy record when I was a kid. It had the routine about the football kickoff. It had his classic line about bringing his kid into the world and taking him out. But our clear favorite was the chocolate cake song. It's about a Dad giving his kids chocolate cake for breakfast and justifying the action because the cake has some ingredients from the four basic food groups. You might know the song: "Dad is great. He gives us chocolate cake."

The autism trainer we work with has suggested we work with Martin on life skills. We go to the park and work on making friends. We go to the zoo and try to look at the animals rather than getting obsessed about the sidewalks. And we cook.

Last night, we were going to make a chocolate zucchini cake. I'm sentimental about this recipe. My friends in Atlanta, Nate and Greg, once went through weeks of experimenting with chocolate cake recipes. This was the favorite. It's moist from zucchini and has just the right sweetness because of chocolate chips and sugar sprinkled on top. Like Atlanta, it was about 112 degrees in Ohio last night. So we put off cake baking until this morning. Martin helped me get out ingredients. He was so excited. "I woke up so I get to make cake."

The problem was that my recipe did not match his recipe. He plays a little online game in which you put some ingredients in a bowl to make a cake. The game has butter, flour, sugar, 3 eggs, and milk. Mine also had spices, cocoa, and zucchini. Mine only has 2 eggs. Martin flipped. He yelled that I had things in the wrong order. He cried and cried. The only way to soothe him was to let him abandon the task. So I found myself baking a cake at 8am all by myself.

Teaching Martin about life skills involves helping him deal with the fact that the scripts in his head do not always match what's going on in the world. The kid at the park might want to slide, but not swing. The zoo animals are really interesting. And there are lots of different recipes in the world.

Friday, August 7, 2009

do the amish blog?

Sometimes I have reservations about blogging, about sharing stories about my family with (potentially) any computer user. Will Martin someday wonder why I felt the need to write about his toilet habits for all the world to see? More than that, I've always been a private person. I consider myself friendly. I'm not stand-offish. But it can take me awhile to disclose more of myself in friendships. So what am I doing broadcasting my inner life throughout cyberspace?

Last night, I was reading part two of "Amish Grace." It's a book about the Amish capacity to offer forgiveness after a school shooting in Nickel Mines, PA almost two years ago. ( The book is emotionally wrenching and a wonderful introduction to Amish culture through the events following the violence. Last night, though, something else in the book caught my attention. In their discussion of how the Amish coped with the loss of their daughters, the authors mentioned Amish circle letters. This practice involves a family or person undergoing a certain experience writing a letter and sending it to another family undergoing a similar experience. That family writes more and sends it on until, eventually, it gets back to the original family. For instance, women who have lost husbands might start a widows' circle letter. The authors noted that Amish circle letters exist for families raising children with disabilities.

Somehow it was comforting to me that even the Amish - a people with so much communal support and so many structures to assist people who struggle - even the parents of special needs children in that community have to reach out a little bit further to find the support and encouragement they need. It says to me that no matter who you are and what kind of community you're in, it's OK to acknowledge that having a kid with disabilities is hard. And that every parent in that situation needs others to remind them of all the joys that are to be had in the midst of difficulty.

Thursday, August 6, 2009

a sister

Martin loves a lot things about his sister. He says that she's cute. He likes some of her toys. He knows how to make her laugh (sometimes) and finds it hilarious. He also likes to wrestle her. Martin doesn't realize that most one-year-olds don't have wrestling moves in their skill set. It's as if he cannot imagine that she doesn't want to do what he wants to do.

This gets to the empathy problem. There have been pieces in the popular press in which writers ponder whether autism is the next leap forward for human brains. They cite the capacity to memorize and other features of many autistic people as signs for the great things that could happen between our ears. Responses to these articles are often quite dramatic, especially from people related to autistics. I recently read such a response in which the writer retorted that it was no leap forward, but rather sociopathic. She wrote of her sister who simply could not muster feelings of empathy. It was the impossible emotion. Reading stuff like this scares the daylights out of me.

Today, Martin told me that he loved me. He also wrestled his sister to the ground in a way that made her cry. Does he have empathy? I don't know. I think he senses that statements such as "I love you" make others feel good. But he doesn't seem to know what makes others feel bad.

I'm stuck. I really value empathy. And I really hope for Martin's future with other people.

Wednesday, August 5, 2009

change of plans

Operation Chicken is in trouble. If it were a politician, I might say that it wanted to spend more time with its family. If it were a third grader's homework, I'd say the dog ate it. As a plan to get Martin to eat one bite of chicken, it has been abandoned.

Every day gives us the chance to try a new learning strategy with Martin. We've had victories. After trying for two years to teach Martin how to answer the question "How old are you," all it took was writing the question and the answer on two flashcards. We successfully introduced Martin to preschool routines with little laminated cards for every action: taking off shoes, washing hands, circle time, and listening to the teacher.

But flashcards and the laminating machine haven't fixed everything. We have many failed experiments. Operation Chicken now joins the ranks with the checklist aimed at teaching Martin the steps to wiping himself, the visual aid for differentiating between loud and quiet speech, and the search for some word, any word, that will get Martin to stop before running into the street.

Tomorrow, I might ask Martin to help me make foccacia. Can you laminate bread dough?

Tuesday, August 4, 2009


Autistic kids are known to have a variety of sensory issues. Some are sensitive to fabrics, which can make getting dressed and living in a non-nudist society a real torture. Others, like Martin, are keenly aware of different food textures and tastes. Martin eats less than a dozen things: PB&J sandwiches, plain spaghetti, bread, a few veggies, a few fruits, and chocolate ice cream. Let's just say that Martin doesn't get a lot of pleasure out of food. He will not be in line to see the Julia Child movie (and not just because he's afraid of women over 6 feet tall).

We've dealt with Martin's food issues in two ways. For a little while, we were short order cooks, something we had always disdained before we were parents ourselves, something we swore we would never do. This approach didn't last long, not only because we found it so ridiculous, but also it didn't seem to be helping Martin. So we tried what might be called a loving and inclusive approach (yes, I'm being a little ironic). Every night, we cook a dinner that we want to eat, but one that isn't too out there for not-so-adventurous kids. We always put bread and butter on the table. Most nights, Martin refuses the main dish. But he'll eat the veggie and a little fruit, along with bread. He also takes a vitamin (a victory in itself as he refused to do it for quite awhile). We had read that if you keep serving your child a regular meal, night after night, some day they will want to be like you and they will start eating what you're eating. We read about this strategy more than a year ago. If anything, Martin's diet has grown more limited. Eggs, yogurt, and rice are now off his list.

I was ready for a dramatic change of events. One on par with our toilet training of Martin, which involved getting rid of all the diapers one day and staying home until Martin started using the toilet. It took four days. In my mind, we would rid the house of everything he liked. Eventually he'd have to eat something, right? A little rice? Maybe some hamburger? Broccoli, even? But my husband read about a different approach, one advocated by people working with autistic kids. We tried it tonight. Let's call it Operation Chicken.

We started with a social story about eating chicken. Social stories involve words and pictures that introduce new ideas to the autistic child. Here's the story I wrote (Pulitzer committee, I await your call): "Sometimes, I don't want to try new foods. Today, I will try a new food. When I eat a bit of chicken, I can have chocolate ice cream." Each line of the story had a little drawing. So my story had a picture of a child eating, a picture of a chicken, and a picture of an ice cream cone. Martin read the story. We put one bite of chicken on his plate. ONE FRICKIN' BITE, PEOPLE! It was awful. He asked for the ice cream over and over. He refused the chicken over and over. My husband was committed to Operation Chicken, but after an hour he chose to abort. We'll try again tomorrow night.

I'll say only one thing more. Lots of people like to recommend lactose-free and gluten-free diets for autistic kids. If you want to remain my friend, don't ever suggest this to me. My kid eats about 8 things. 6 of them fall in the lactose and gluten category. If I had to deal with an even more limited diet, I might denounce my pacifism and rip someone's head off.

Sorry, readers. I'm kinda sore about Operation Chicken. I hope Rumsfield feels like this about Iraq.

Monday, August 3, 2009

the lookout

I'm on the lookout. Martin needs a new tutor. The woman he has worked with over the past year is taking a new job and can't work with us anymore. We're bummed.

Essentially, his tutor was so good that she worked herself out of a nearly-full-time job. Starting last August, she was trained in Applied Behavior Analysis ( It's one of many therapies used with kids on the spectrum. Side note: if you want to start an argument in a room full of speech therapists and specialists, take a position on one of the therapies and watch the mudslinging begin. My initiation into this madness occurred when I told a colleague in my college's communications disorders department that we would be using ABA with my son. She invited me to have coffee so she could talk me out of it. She also refused to recommend any of her students as potential tutors. Geesh, I thought that vaccines and lactose free diets were the only things that put autism partisans' knickers in a wad. I guess I was wrong.

Back to the tutor. She worked with Martin 5 days a week. She accompanied him to preschool for 3 hours. Then they came home and did one-on-one language work for three more hours. It went so well that Martin will be able to go to school by himself this fall. So tutoring has dropped down to a part-time job. We're sad to lose this tutor. She played such an instrumental role in Martin's progress. And even though she had no experience with autism, she has what you need: gentleness and patience. Really, I feel like she has more of that than my husband or I do. So maybe I'm sad to lose that part of her just as much as the part that has so effectively helped Martin learn to speak.

Anyone want a job with a cute little fellow in Wooster, Ohio?

Sunday, August 2, 2009

mile markers

The passage of July into August makes me think of the road trip that prompted us to get Martin an autism evaluation two summers ago. We planned a three-week travel extravaganza. We drove from Ohio to Minnesota, where we stayed for a week so I could do some archival research. My husband and Martin spent the days at the house we were staying at, which belonged to my good friend's parents. It was perfect. They spent lazy days by the pool and having a great time in the Minnesota summer. From there, we drove to Winnipeg, Manitoba to spend a week with friends that live there, along with two other families. It was a sort of grad-school reunion. That's where the trouble started. Martin was miserable. He had to share toys with kids he didn't know very well. There were planned outings that he didn't enjoy. (I'm hoping the Winnipeg Zoo has forgotten about our trip there.) Other people were cooking so he didn't get to eat what he wanted and when he wanted to. He got increasingly upset by the day. We drove home over four days, stopping three nights to camp and one night at my parent's place in Indiana. He was intrigued by camping, especially about toasting marshmallows. But it was, again, too much new stuff. The second night, at a beautiful campsite on Lake Superior, he woke up screaming around 2am. We put him in the car and drove him around the campsite for over an hour until he calmed down. We were at the end of our ropes.

It's tough to determine when your kid is within the boundaries of normal and when they are something else. We knew that Martin's speech was somewhat delayed, but figured it would catch up. His childcare providers didn't seem worried. He made it through the annual pediatric checks with no real problem. But the road trip showed Martin's almost total inability to adapt to new situations and make friends. It showed how far behind his language was (there were two other 3-year-old boys in Winnipeg). And yet, it was really hard to make that doctor appointment.

At the suggestion of one of our friends we saw in Winnipeg, we started some internet investigations about autism. While we saw some similarities, we also saw some differences, which fuelled my resistance to a diagnosis. Martin does not "stim," which means rapid, repetitive body movements to relieve stress. More than 80% of kids on the spectrum do it. And Martin's really affectionate, which also went against the diagnosis checklists. But there was a lot of overlap. We went to the doctor the next week. Halfway through the long list of questions, the doctor looked up at us and said, "Do you know where I'm going with this?" I'm afraid we did.

That same week, I started my second year teaching at a small college and I also found out I was pregnant with kid #2. I look back on August 2007 with a sort of amazement. Did all of that really happen in a month? Did we really choose to have another kid in the midst of not knowing what was going on with the one we already had? Why did I think I could do a demanding job in that situation?

August 2009 has already been good. Yesterday, Martin and I made a calendar so he could cross off all the days until kindergarden starts. Things are getting better.