regression

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.

chairs

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.

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.

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.

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. (http://en.wikipedia.org/wiki/Synesthesia) 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?

school!

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!