A couple of years ago I began thinking about “The Miracle Worker.” Specifically that moment when Annie Sullivan realizes she’s never going to get through to Helen Keller while she’s at home and her parents indulge her and give her candy whenever she starts to have a tantrum.

If only we had a teacher who could take Alex away for two weeks — reach him and teach him, put him in TV detox.

Little House by the Apple Tree (photo by Uncle Phooey, flickr.com)

I’m ashamed to say Alex does not eat with us at the table. He has some other behaviors we don’t like (constant TV-watching, for one) that we’ve allowed to become entrenched. I guess we might just as well have allowed him to wander from plate to plate, grabbing whatever food pleases him.

It began to seem as if Alex does have some things in common with Helen Keller: he’s so hard to reach sometimes. We’ve let certain things slide because it’s just easier. Inside him is an intelligence that’s something to reckon with, and it’s easy to overlook with the rocking and sparse language. If it’s hard for us to get in, I think it’s just as hard for him to get  out.

We watched “The Miracle Worker” the other night because Ned has been reading about Helen Keller in school. This time,  my reaction was mixed. Instead of cheering Annie Sullivan on I thought she was a bit harsh, a bit impatient. I wish she had been more willing to spend a few days just getting to know Helen. Everyone — the mother, the father, Sullivan herself — was a bit wrong and a bit right.

The parents definitely underestimate Helen and indulge her. But they love her. And they want a teacher who’s able to achieve a more affectionate relationship with her. Sullivan definitely wants Helen to communicate and learn. But she’s so rough. It was more painful than I remembered.

Even so I’m left with the sense sometimes that if Alex is going to come out of his shell it won’t happen at home where we indulge him and give in to him because it’s easier and we’re tired. It will happen with some teacher, somewhere, sometime — questions I obviously have no answer to.

It’s a typical Sunday evening, except without the deadline. It doesn’t matter what time everyone goes to bed: no alarm clock’s going to go off at 6 a.m. in the morning.

On the one hand, that’s great. To me, summer is freedom, late mornings, no homework, no early bedtime. On the other: what’s Alex going to think when, in a couple of months, he returns to school, but to an entirely new building? He’ll be in summer school this year (we decided he didn’t get that much out of camp) but that always takes place in a different site from his September-through-June school. He’s used to that. Then he’ll have a week or so of recreation that he always enjoys. Then a week (actually slightly less than a week) of sleepaway camp that he doesn’t enjoy that much, but which is a very sweet week for us.

Macy's fireworks in Manhattan, 2008 (photo by Neotint, flickr.com)

Then possibly a family vacation to Cape Cod because school starts so late this year. Then middle school.

For now I’m feeling that toe-wriggling feeling of freedom and happiness that comes when you know next weekend is July 4, and there’s no school tomorrow.

If I can stop crying long enough, I can write a few thoughts on Alex’s graduation from elementary school.

Alex’s school, a NYC public special ed school, has a bunch of locations. They’re schools-within-schools: a few classrooms in a general ed school. In this case, an elementary school in Washington Heights whose only drawback is how far it is from our apartment.

Unlike many other schools, the principal of the general ed school — Tracy Walsh — is unusually welcoming to the special ed students. Near the end of kindergarten, Alex came home with a graduation day t-shirt from PS 48. What’s this? I thought. Alex isn’t graduating. Alex doesn’t go to PS 48. On the back of the t-shirt were all the names of the graduating students. And Alex was one of them.

Six years later, Alex came home with another graduating t-shirt. Alex is graduating, we realized. And there was his name.

On the way to school we got a phone call from Alex’s teacher asking if we were bringing black pants for Alex. Apparently a letter was sent home (we never got it) asking the graduating students to wear black pants and white shirts. Even if we’d gotten it, I think it would have been near impossible to get Alex into black pants: he only wears khaki.

When we got there, June (his teacher) had somehow gotten him to wear an unfamiliar white t-shirt AND he was sporting a blue ribbon sash. Through the crowds of parents we could see Alex sitting with his teacher. We read the program: Alex would receive two awards, one for reading and a special UFT (United Federation of Teachers) medal of achievement.

When he went up to the stage, he was always accompanied by his teacher or an aide. Good thing, because he found the red curtains on the stage irresistible. People laughed, but not unkindly. They applauded when his name was read. Alex’s teacher read names for some of the awards, and the assistant principal of his school, who is leaving to become a principal, was honored. And I think this is what makes me so weepy. It was no surprise that Alex would be somewhat wander-y or would need someone to help him on and off the stage. But that his classmates and teachers and administrators would be so much a part of this big, glorious celebration was unexpected (I know, I should guessed from those t-shirts).

It’s not like this in a lot of schools. General ed principals can be uncomfortable with our kids — and in some cases downright unwelcoming. I’m sad that Alex is leaving this beautiful school that was so accepting of how different he is. I know the rest of the world doesn’t have the same serene acceptance of people who are different. But really. Every school should be like PS 48. Every principal, every leader should conduct with the grace and kindness of Tracy Walsh.

We bought flowers for Tracy Walsh yesterday morning,  who shrugged off all thanks and said, “They’re all our kids.”

Among our books is a copy of the Betty Crocker book of children’s parties published in the early ’60s, which I’ve kept because it has a very touching section on children with handicaps. “Children who have physical or mental disabilities are, first and foremost, children,” the author points out, “with the need for color and excitement and surprise in their lives. They have friends, and should be able to entertain their friends. The child who is giving the party may invite friends who have similar disabilities and also friends, brothers, sisters, and cousins who do not have these disabilities.” I am so moved by the inclusion of children with special needs that it’s probably earned a permanent place on my shelves.

Illustration from Betty Crocker's Parties for Children

I know some kids with autism may not enjoy the swirl of sensations that go into even the simplest party - and when he was younger, Alex had his moments of bursting into tears and not wanting to be around the few of us singing Happy Birthday - but these days  he lights up at the very idea of a present, a word whose meaning he certainly knows. So any ideas on helping make it a successful celebration are welcome.

When Ned was young I spent a fair amount of time on sites that give birthday party ideas (if you’re looking for how-tos on a farm or pirate or Spiderman theme, there is no better place to go). But search “special needs” or “autism” or “spectrum” on these sites and you get nothing. I know, I know, you can just type those terms into any search engine and get great results. (Like this one, which has gift ideas for kids with autism.)

Imagine a party like this one. While it’s easy to think that everything’s better and more inclusive and more P.C. these days there definitely were people who exhibited both common sense and kindness when it came to kids with differences. IIt seems like the sites that deal with birthday parties and assume a world in which no special accommodations are needed are coming from the truly rigid, out-of-date era.

This summer, I’m going to live in one of these floor-length summer dresses. Airy as a fluttery, summer breeze, this makes summer dressing a … uh, a breeze.  I’ve been seeing pictures and now actual people wearing them - moms, even - and I think this is definitely the way to go. Just a floor-length gown, silver gladiator sandals and a juicy large tote to hold everything.

Lots of dress, little practical application

As soon as I get my long, buttery, fluttery dress (which I’m certain I’ll never trip on or get tangled up in) I’ll meander down to the farmer’s market, basket over one arm, to buy flowers and free-range eggs (which I’m sure won’t fall out of the basket and spatter all over the sidewalk) and then sit at a sidewalk cafe (where I’m positive I won’t splash any gin-and-tonic on myself).

This gorgeous summery bubble bursts as soon as I imagine myself with Ned and Alex. Because whenever I get dressed to go somewhere with Alex, my must-haves include sneakers or sandals (the kind that aren’t going to kill you if you try to run in them). Because if you’re with Alex, sooner or later you’re going to have to run.

Today it struck me how certain styles seem to have “neurotypical parent” stamped on them. Tiny cute handbags?Where do you stash the wipes and the emergency Saltines and the occasional toy truck? Single-shouldered styles? So I have to run out and get completely new bras to wear underneath? Platform heels? See “maxi dresses.”

About the only thing that makes sense is that big tote. Holds plenty of crap, and a book or newspaper (or both) so I have something to read while Alex and Ned zone out on a long bus ride.

1. Alex’s sweet nature. He chatters and babbles if he doesn’t get his way and he does kind of run around in the house but his wants are fairly simple. Will work for chocolate chip cookies. Is delighted with a trip to Borders.

Photo courtesy of Jelene (flickr.com)

2. Great excuse not to do things. “Oh, we’d love to… only YOU know. Alex.” Smile wistfully. Shrug. “We just can’t.” Gets us out of various family things or social events we don’t feel like going to.

3. Blessed silence. Of course I love when my children talk to me. Alex rarely does and sometimes that’s a plus. We can sit together in companionable silence without the constant wall of sound you get from some kids.

4. Great excuse for being late. “Alex couldn’t find his favorite book.” Acceptable, because everything with Alex takes longer. If he talked, it wouldn’t take as long. But he doesn’t. Of course sometimes it really is his fault. Quite often, really. So don’t think we’re just using him as an excuse whenever it’s convenient. We would never do that.

5. Free babysitting. Because of Alex’s Medicaid waiver, a respite worker comes every Saturday evening for a few hours to take care of him while we go out.

6. We get to meet a lot of people and parents we wouldn’t have met otherwise. Alex’s last service coordinator is a wonderful young woman who left the service world to go into fashion.

7. Automatic respect from people who say, “I could never do it!” because they’ve never had to. They’d be able to - they just don’t know it, so they think there’s something special about you.

8. You slow down and look at things very carefully - words on a newspaper page, water splashing in a fountain, alphabet blocks - and appreciate more details than you saw before.

9. No longer worried about buying a lamp that you can’t figure out how to turn on. Alex can figure out any light fixture.

10. The purest birthday celebration. Last year we had cupcakes and lemonade in one of Alex’s favorite playgrounds. We’re planning a repeat this year with a slightly larger group.

Alex doesn’t seem interested in riding a bike, but lately he’s been eyeing his brother’s scooter. We went to the park last week — Ned and the other kids had scooters, and I didn’t want Alex to feel left out, so I grabbed our new pogo stick (a gift from Grandpa) and handed it to him. Not only did he carry it to the park the whole way (often he starts out holding something and then flags and tries to get me to carry it) but once there he practiced over and over again, trying to stand on it and jump.

Photo courtesy of ndrwfgg (flickr.com)

We frequently have to remind Alex to look where he’s going. Tripping down subway stairs. Careering around a street. If he learned to ride a bike or a scooter, he’d HAVE to watch out and set a course for himself. Fix his inner self on some goal — go THERE — and train his gaze in order to do it. So I’m thrilled at his determination to use the pogo stick. He even tried a scooter for a few minutes, but circled back to the pogo stick.

A couple of summers ago we met the director of Alex’s sleepaway camp, a dynamic woman who said she feels all kinds of movement — including skiing — are terrific for people with developmental disabilities. It’s a kind of self-reliance, she pointed out.

You don’t see many pogo sticks these days, but ours attracted a lot of attention. Kid after kid came up to us in the park and wanted to try it, and our neighbors offered their scooters to Alex in exchange for a turn. He stayed with the pogo stick for about 20 minutes (a long time for him) then used the scooter, went on a tire swing and finally climbed the monkey bars so he could sit with the other kids perched on the very top. He needed just the littlest bit of help to get started, and did the rest himself.

Alex runs out of our apartment. He did this once at about 3 in the morning and we only knew because the phone rang (”Who the HELL is calling us in the middle of the night?” we fumed) and it was a neighbor, saying that Alex had come into her apartment and turned on all the lights. She wasn’t mad. Her boyfriend was mad at her the next day for not locking her door. Jeff was thankful she didn’t shoot Alex (not that she has a gun, but you get the idea).

When we stumbled out of the bedroom to look for him, he had already come back to the apartment and was blinking at us with a surprised smile (he didn’t think we’d know about his little excursion, maybe).

I slept fitfully, for the rest of the night.

The closed door (photo by Kwerfeldein, flickr.com)

Jeff didn’t go back to sleep at all, but simply started his day at 3:40 a.m or so.

Next day, Jeff took  the day off from work and we stopped in a number of lock shops and made a number of phone calls, trying to figure out what to buy so we could sleep through the night again. We settled on a couple of door alarms and for a few harrowing months, set both up. Now, we just have one at the top of the door, which is triggered if the door opens.

Since then, Alex hasn’t run out in the middle of the night. I’m relieved - and I know that alarm will always, always wake me.

The other day, a neighbor stopped by to ask me something and while we were talking Alex kept trying to dart out the door. He ran down the hall a few times and almost enraged, I kept grabbing him and screaming. Turns out he wanted to shut the stairwell door in the hallway, so I made him say those words (I - want - to - shut - the - door) and the minute he did I felt something relax in me, the tension draining away as he put into words his intention.

It’s like that door is sometimes the only thing he sees in an empty landscape, an irresistible siren call to freedom, to waiting by the elevator for Daddy to come home from work, to doors that need shutting.

Apparently I once said to Jeff there should be an autism hotline, kind of like a suicide hotline. I’m not sure what I had in mind, but I guess it would be a kind of clearinghouse for information as well as a source of support during tough moments.

Image: sxc.hu

This morning, I think we might have called the hotline to find out what to do when your son occasionally misses the target. And I don’t mean just a few drops or a little spray. I mean he pulled his t-shirt up to cover his face (because he does that now and then) and let fly. Soon I heard Jeff yelling and went into the bathroom to see what was going on, and Jeff fumed, “He’s flooded the floor!” I looked, and sure enough, it was a flood.

Alex learned to use the toilet fairly easily, and it seems well fixed in his mind that if you have to go, you should wait for a toilet. But he doesn’t seem to care that much (at least at home) about getting it all in the right place. Jeff says aiming is not the problem. “He knows how to aim - he just chooses not to,” he says. I don’t know. I still think maybe we should try putting Cheerios in the toilet and asking him to hit the target. It’s like he doesn’t care, and we’re not sure how to make him care about his aim.

What we did: screamed and yelled a lot, made Alex help clean it up (which he is pretty good about doing - when he knocks over the cat’s water, he always gets paper towels and carefully wipes up the spill), applied plenty of magic cleaner (see recipe below).

What I wish the autism hotline could have told us, if it existed: this is a common problem; there are techniques to try; it will get better; here’s a recipe for really dynamite cleaner that removes the urine odor (see below) and is far superior to ordinary glass cutters and cleansers like Fantastik.

Before anyone feels like jumping all over me for linking to a cleanser that’s formulated to remove pet odors from your life, know that we purchased it because our cat was peeing on things, and it really sucked even more than having your bathroom smell like a public restroom. This stuff really did the trick, but it was incredibly expensive, so I figured out how to make it so we wouldn’t have to spend $11 for 16 ounces or so.

Magic cleaner recipe: It’s equal parts alcohol and hydrogen peroxide. Dilute with a little water. Add fragrance if you want to. Apply liberally to wet spots. We use it on our sheets and bedding when the cursed cat decides she’d like a second cat box, and our bed will fill the bill nicely.

All my life I’ve thought of cabling as impossible. Slip stitches onto a cable needle? And twist them or something so they seem to magically work themselves into a raised, entwined weave? That’s for magicians. Or brilliant knitters. Or people who are just so talented they can intuit this stuff the way the rest of us intuit swallowing. I never even bothered reading directions for cabling (what’s the use?) or letting anyone try to teach me (why waste time on something I won’t be able to learn?).

Then one day (last Wednesday) I thought, I can do this. I have a big book of knitting, crochet and embroidery directions from the laundry room book exchange, and I decided to look at the cable directions. They seemed clear enough. I don’t have an actual cable needle but I have a number of double-pointed needles that would probably work. And I found myself slipping stitches (not hard), knitting the following stitches (quite easy) and then knitting the stitches on the holder (weird but doable). A couple of rows later I could see the twist emerge. Since Wednesday I have been walking around thinking that anything is possible.

So, my point (and I do have one, as I have to say to Jeff on occasion): perhaps there are things Alex is capable of that we’ve wondered about, or even dismissed. And I hate admitting those things - who wants to sell their child short? But secretly (or not so secretly) I’ve worried so much about Alex. Can he learn to read? Can he learn to talk more? What is he capable of learning? I don’t know.

Jeff asked, “Can you learn to live with autism?” “No,” I said. “I hate autism.” Meaning I hate the shattered nights when Alex bounces up at 3 a.m., laughing and chattering. I hate his new habit of  running his fingers over his lips and babbling. But I think Alex is capable of learning not to do these things - and I think he’s capable of reading and communicating more than he did a year ago, and more than he does now.