Additional responses to “What’s the one thing you’d like to say to your relatives about your autistic child?”:

“Just love him and enjoy him.  Let me worry about the rest.”

“Thank you for loving him and treating him like the beautiful blessing that he is. We’re blessed and lucky to have family that ‘gets it’!”

Photo by Me-Liss-A (flickr.com)

“Sometimes (my wife and I) need your help watching him so we can spend some time on ‘us’.”

“How we live for the ‘us’ moments, and have learned not to feel guilty about it. If only our loved ones could understand.”

“Please don’t look at him for what he is not, but rather for what he is.  There is not one day that goes by that he does not amaze me, I wish you could see and understand the same.”

“Recognize some of the exact same ‘quirks’ in yourself.”

“Thank you for loving him and recognizing his gifts. Understand that spending time with him is all he really needs.”

And in response to the question, “What’s the smartest thing anyone ever said to you about your autistic child?”:

“He is charming and intelligent beyond his years”; “He is a tutor in his math class”; “Quite frankly, he is refreshing compared to the rest of the kids (in middle school)”;”We love him here at school and we will miss him.”

Thanks as always to everybody over on the LinkedIn boards.

* * *

“Autism Parents’ Plea: Understand Kids’ Meltdowns,” from CNN.

IQ testing for children with autism, from about.com.

The first hint of the formality of Alex’s graduation from fifth grade to came in the cab on the ride to his school, when Jill’s cell phone rang. I heard Jill say the name of Alex’s teacher. “He’s sick?” I thought. “This morning of all mornings?”

No. Instead the teacher wanted to know if we’d gotten the message about dressing all the graduating kids in black and white for the ceremony? I had some memory of that but not a strong one — at this point in my parenthood only a drop of guilt can turn into a real past event in my head. Alex went to school in khakis and a T, and good luck getting him to wear anything else these days.

Teacher got him into a white baseball T. Alex was one of two kids in his special-needs class graduating, the rest of the graduates made up of kids from the typical school Alex’s classroom sits in. The kids were in summer dresses, little suits, some ties, all of their shoulders draped in the school’s purple grad banner. Most of the parents were dressed to match, minus the banners, of course. I showed up in cargo shorts and a short-sleeve button-down shirt and Chuck Taylors. Why hadn’t I foreseen this moment? For a moment I told myself that being the parent of a kid like Alex should give me a built-in excuse, but that sounded feeble the instant I said it to myself.

I hadn’t, and the moment soon took me in the throat. There were all the kids and all the awards, all the balloons and all the digitial camera phones and all the applause – no great amount of the latter but certainly no small amount of it, either, for Alex and his autistic classmate, even as Alex kept escaping on stage to see what was behind the drawn curtain. In his white baseball T and khakis. Once he got a laugh. Halfway through the ceremony, I saw he’d shed his banner. He won an award for reading, along with four typically-developing students.

About that same time, it hit me that this was it. Jill has already talked about the kindness of this place, a kindness I confess I’ve taken for granted for six years. It hit me that maybe this was the end of this kind of kindness, for a little while, and I just didn’t know it yet.

Leaving too was the assistant principal, off to assume the big chair at a special-needs school in Queens. She was a unit teacher when we met her a few years ago, rising soon to assistant principal, and this fall, when Alex gets off the bus in a strange place and it hits him that “school” now means something dramatically different, she will be far away. I’ll miss her and miss them all in the way I didn’t realize until this ceremony, when it feels like I graduated in a way, too.

***

President Obama announces new initiatives to help Americans with disabilities.

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.”

Sometimes it seems like Alex’s most obvious characteristic — or maybe it’s autism’s most obvious characteristic — is lack of focus. When he was just three or so, a neighbor watched him careen around her apartment examining things and wandering around without stopping. “My, he’s BUSY!” she observed. At the time I thought it was positive: he’s doing things, I thought, thinking about things, looking at things.

Photo courtesy of JunCTionS (flickr.com)

But he’s 11 now, and when the rest of us are sitting around watching a movie or eating dinner, Alex is still busy. Still wandering. Standing up in front of the TV blocking our view. Restlessly picking up toys and putting them down and looking for other toys.

I searched photos that were tagged “restless” or “restlessness” but decided on “unfocused” as the adjective that often describes Alex’s engagment with the world. Other times, he is SO focused, so engaged we watch, proud and admiring his ability to look through a book or form Scrabble letters into words.

Alex brought home the T shirt the other day, the shirt that his school issues every June. He goes to a special-needs fifth grade — “will have gone to a special-needs fifth grade” by a week from now — that sits in a school of typically developing kids.  All the graduates get their names on the back of the T shirt. Two of the names from Alex’s class this June, and one of the names is his.

Image: msg.mercyhurst.edu

I don’t know how to feel about these graduations, which this year even came with a school photo of him in a cap and gown. Nothing amiss with that, of course, except that the background of the photo was shelves and shelves of what appear to be law texts. By sixth grade, I’m afraid we have to admit the truth about law texts in Alex’s future.

This will be Alex’s fourth in his 11 years, and I believe if he were typically developing and not autistic he’d probably have gone through just as many. But for him and his classmates, they feel to me anyway a little too much like play, the backgrounds more like cartoons and the cap and gown more like a costume than it does for others. I do feel, on the other hand, that he’s truly graduating into a new breed of schooling next year, when he enters middle school.

On a morning this week — “9 a.m. sharp; this ticket admits two to the ceremony” – Alex will appear small and far away from my seat in the audience. He’ll be holding someone’s hand on his way down the aisle. He probably won’t march in time like the other students — the song always struck me as a bit of dirge, anyway — and he’ll probably be looking around more than the others. I hope he sits through this ceremony. The ones for preschool he wanted little to do with. He kept bolting to us in the audience, then at last ran outside to play. I hope he sits this time. It’ll feel more like progress.

photo courtesy of Bill Ward's Brickpile (flickr.com)

We had, a little informally at the beginning, Alex’s IEP meeting yesterday. I say informally, because it began as a sort of rap session about where Alex stands now and where he’s headed in sixth grade in the fall. A form went around at the end of 90 or so minutes with us all in the small hard chairs, when we had to all our satisfaction covered Alex’s goals.

In sixth grade in September, Alex will begin that period of education that leads more seriously to work. This period will head toward that eventual goal in a way more serious than in elementary school, where mostly he simply learned to work and thrive and spend his days in a classroom. Soon the real world will be a little closer.

His teacher and therapists went over what I think is a pretty solid set ofgoals for the next year:

Speech: More listening and comprehension, more concentration on the people in a picture of a group. Uttering more sentences that contain a subject, verb, and object, and using more attributions such as sizes, colors, and shapes. More of what I termed “assemblying” the vocabulary he’s built.

Math: More times tables, specifically the 2s, 5s, and 10s. The ability to tell time and count money (Alex currently must count the change on Friday afternoons for admission to a video at school). (It floored me that he was doing times tables; I’m afraid he and I have never moved beyond that pivotal moment now years past when I was getting him to write C’s and he tried to hand me the pencil and I said “You do it.” That’s become his homework catchphrase since, usually accompanied by handing the pencil back to me.)

“I want him to start carrying,” his teacher said, adding that Alex will often tally when asked to do math, and other times just “doesn’t seem to feel like it.”

OT: His handwriting has greatly improved, if his accuracy hasn’t. He aced the memory and orientation parts of letter-writing, but bottomed out on control, placement, and letter size tests. In other words, Alex found the light-blue lines evasive targets. They want him to continue keyboarding and doing well on a computer program where he finds objects and the computer tells him if he guessed the right answer. Sounds like the workworld to me.

I like to think Alex is a little more normal — or, like everyone else, manipulative — than might first meet the eye. Most obviously, there are the exchanges that go like this:

“Crackers?”

“How about pretzels, Alex?”

“How about crackers?”

or

“Alex, we can buy one book today. One book.”

“Buy two books?”

Image (Paul Klee's "One Who Understands"): Ben Sullivan, Flickr.com

That’s just wheeling dealing; that’s just how everyone gets through the world, and it’ll be great to see develop, just like it would be in a “normal” kid, until it inconveniences me. I know he understands stuff, too, but just doesn’t let on he knows. Like it takes dynamite to wake him at 6 a.m. on a school morning, yet he pops up like a dawn sparrow on weekends. I used to think this was just autism making my life a twisted mess until it occured to me that somebody at Alex’s school must say to him “Have a good weekend — see you Monday!” on Friday afternoon. So he knows it’s Funday the next day, and he’s happy and eager to bounce up at a Marine Corps hour, just like any kid would be. It’s just that any kid might also tell you so.

But sometimes it does feel like yes, you’re driving in traffic with Alex, but instead of red, yellow and green, the streetlights are blue, pink, and brown.

Consider the street-crossing scene in Rain Man, where Raymond stops mid-way through the street because the walk signal changes from Walk to a blinking Don’t Walk. “No, Raymond/Alex,” I feel I could explain, “you cross when it says Walk and you can still cross when it says Don’t Walk but it’s blinking. You have to stop when it says Don’t Walk and it’s no longer blinking.”

“No longer blinking,” I’m sure Alex would say. You and I would reply “okay” to these instructions. Alex, I think, would repeat one or two key phrases from the instructions. I also think that soon he’d continue walking on the blinking Don’t Walk. From his perspective, the result would be the same. From my perspective, I wouldn’t be immediately sure — “no longer blinking” isn’t “okay” to my brain — that Alex understood.

That doesn’t mean Alex wouldn’t or doesn’t understand the world. It means I still don’t understand his.

Our summer plan calls for water parks.

Image: Spakattack, flickr.com

We still don’t know how Alex will react to not going to day camp. Much more important than the cost of savings was that Alex has always seemed to enjoy few parts of camp. Camp theme days seemed to leave him cold. He’d often get out of the pool before swimming was over; he’d spend a lot of arts and crafts period running from light switch to light switch in the cabin; he seemed okay with concept of baseball, but always wanted to carry around the ball, bat, and glove (they are, after all, a set). The staff was great, the camp lush and lovely, and his shadowing counselor was, I think, his first crush. But all he ever seemed to like at camp was Flying Squirrel, a bungee-like contraption that bounced kids high in the air.

He seems to love school, however, and sped summer school in New York is a lot of play and recess anyway. Surely he’ll be okay with that (even though three years ago he cried on the first day of summer school)? I do wish we could ask him, but as usual with semi-verbal Alex it’s a matter of guesswork, watching sharply for clues, then probably getting it all wrong anyway.

He sits on the couch and silently flips through last summer’s camp scrapbook. “Summer school this year, Alex,” I say. “You’ll go to school and we’ll do stuff on the weekends.”

Coney Island’s water flume was always a favorite. Alex’s rec programs have also gone to water parks (so did day camp, occasionally). He would sit patiently in the front of the big log boat and wait for the heart stopping drop and tidal wave splash at ride’s end. A whole park of such rides should ease the pain of no Flying Squirrel.

Our plan calls also for zoos, beaches and seaports of Connecticut and Rhode Island, fire museums. Maybe we’ll even run him out to Sesame Place and watch his little mind be blown by a 6-foot Elmo.

“Alex, school this summer.”

“School,” he says, flipping the pages of the scrapbook.

***

See these options and tips for summer travel and vacations with people with autism.

Here’s a national awareness day I’d like to see. Or perhaps it should be a freedom-from-awareness day. We’re not a family who does biomedical interventions (although there are all those things Jeff loves to dissolve in water). But we live with and think about autism every day. Am I the only one who finds this exhausting, especially when you throw in the occasional broken night of sleep?

Photo by Elsie Esq. (flickr.com)

If Autism Awareness increases others’ understanding of this disorder, Freedom from Autism Awareness helps people to recognize the burden on families living with autism so they can support them with sympathy and understanding.

So I’d love one day of the year that proclaimed freedom from thinking about, worrying about, reading about autism. Instead, families living with autism would be treated to a special celebration with delicious food (gluten-free, for those who are on special diets), music, live performances.

If you’re someone who knows someone whose child has autism, you can help celebrate by not making suggestions or asking if they’ve read Jenny McCarthy or seen that piece on CNN or heard of melatonin for sleep problems or seen “Rain Man.” I suggest taking your friend to a movie or buying an elaborate gift basket with a lot of fresh fruit. Don’t buy greeting cards. (Though I’m sure the card companies will rush to put out cards that say, “With love and understanding on your Day of Freedom!”)

Strolling jugglers, picnics, shady trees, a child-care center, napping pods, salt-water wave pool, chocolate fountains. Bruce Springsteen, Crazy Frog, the Black Eyed Peas and a philharmonic orchestra or two, and a good high school marching band would be terrific. The day would end with fireworks and a make-it-yourself sundae and martini bar. And an appearance by the Lipizzaner stallions would be a nice touch.

When the economy got flushed last fall, I wanted them to make some sort of exception and keep Alex in his elementary school for one more year. I figured better you’re with the people who’ve known and loved you for years when the money and resources run short.

Things have changed. “Rebound” is a word you actually spot now sometimes in business news; the Stimulus Plan, educators tell me, will provide a little transfusion relatively soon to schools and special-ed; and I’ve had a chance to think about how Alex maybe needs to move on.

Image: KPBS, flickr.com

I got that last idea when I stopped to think how long I spent in my elementary school — which, I’m informed, since became Bangor, Maine’s first elementary school to house classrooms for students with autism. I was there from K to 6: seven years, longer than I spent in any one school to the end of my formal education at about age 21. After Vine Street Elementary, it was a year or three here, a year or three there, until I was shanghaied by the work world.

Perhaps, Alex is entering a new phase. And it was arresting to see the classrooms of a middle school, where similar behavior to that I’ve seen from Alex and his elementary-school classmates took place somewhere that just seemed more studious. The tone was quieter, the books thicker, and it seemed to me the students were expected to keep their noses closer to the grindstone. This, I believe, will move Alex on, at least for a few years.

Not that there’s anywhere for him to go. We were first recommended to two schools, and neither seems to have a spot. Jill’s fixed on another middle school she likes the sound and tone of, but again, no empty seats. “He’ll go to school somewhere,” Jill says, exhausting her certainty for September.

A Rochester, N.Y. sped teacher I met a few weeks ago emphasizes that Jill and I face a similar challenge to the one we beat in early 1999, when the then-infant Alex needed another hospital to help him climb to the next stage. It was a matter of bed and not desks, but our hospital of choice then also didn’t have many openings. Jill and I went anyway, we noticed, we noted, and we decided and then we fought. Same deal, I think, same deal. Least we’ve been there.

***

The Southern Poverty Law Center has released the booklet Speak Up: Responding to Everyday Bigotry. Strategies and tips for dealing with untoward comments from family, friends, schoolmates, strangers, and others.