1. Elmo (sadly) remains a favorite. Maybe it’s just a comforting habit now; he doesn’t seem riveted the way he did when he was younger.

Photo by Kitten Fleming

2. Chocolate chip cookies. (Never-fail recipe secret here!) Equally enthusiastic about homemade and freshly baked or dusty old Chips Ahoy.

3. Prefers homemade brownies. The first time he had them, on Christmas Eve about four years ago, he followed me around for about an hour saying, “Brownie? Brownie? Brownie?” (Note: After several different recipes, I’ve settled on the sublime Katharine Hepburn brownies with an added half-teaspoon of almond extract.)

4. The part of “Arthur’s Pet Business” where Arthur’s baby sister Kate wails. Loudly. He loves to rewind to this part. Sometimes I hide that tape for a few wail-free hours. It is permanently seared into my brain.

5. Have a hardcover book with dust jacket? Alex will thoughtfully separate them for you. (He’ll also slip the bookmark out, so I’ve gotten in the habit of glancing at the page number.) If it’s a library book and the jacket is in the plastic slipcase glued to the book, Alex will rip it off. I don’t know why he does this. Usually he looks for things that go together and reassembles them (like slices of watermelon).

6. Bathtime. Warm water, splashing, no one to bug him (we’re usually watching TV while he bathes) — what’s not to love?

7. Alex loves repetition and predictability. A bookstore provides both in the form of endless shelves of similarly shaped objects and copies of his old favorites, which he revisits for a satisfying hour or so.

8. The epitome of order and routine — with accessible shelves of books to boot — school is such a favorite place that Alex often stops at the locked doors of whatever school he happens to be passing on weekends and holidays.

9. We might be going to a suburban supermarket, a Westchester museum or Stew Leonard’s. Alex is always up for a car  ride. (We occasionally rent from Zip Car.)

10. Sometimes it’s the farm yard assortment of ducks, cows, chickens, geese; other times lions and tigers and elephants entice him. Either way, plastic animals remain a source of great attraction.

Jill mentioned the Boy Alone memoir by Karl Taro Greenfield, and that some of the comments left on the NPR site berated Greenfield for selfishness and lack of empathy when discussing his special-needs sibling.

Yet even a special-needs parent doesn’t face the Everest of most sibs. Don Meyer, Washington state-based pioneer of the contemporary sibshop model, has noted that some of these siblings will be in the lives of and overseeing care of special-needs brothers and sisters for as much as 70 years. Seventy years. No one who doesn’t face such a thing has any right, I think, to open their mouths.

“The brother or sister is closer than the parent is,” says Ned, Alex’s 8-year-old typically developing brother. “The same height, same age, same thoughts, same idea of playing.” In the case of someone like Ned, even a future spouse may have to be on board with caring for Alex.

That’s the kind of responsibility they bat around in sibshops. “How many of you have ever heard of sibshops?” I ask audiences of social workers, education majors, teachers. Few hands go up, and that’s too bad.

Sibshops generally comprise sibs between ages 5 and 18 or so (there are models around for teen and adult sibshops, too). Everybody does arts and crafts and plays games, but the younger participants play more childhood games; older kids tend to sit and ask questions in a more mature setting. The theme is the same: Tell about a time your sibling embarrassed you in public. Tell about a time your sibling made you proud. Tell about a time you were really mad at your sibling. Tell about a time a friend really understood about your sibling.

Sibshops don’t siphon all the feelings, but at least they make somebody feel less alone. It staggered me, a dad of autism who attended one of Ned’s shops, watching these little kids run around in play and thinking about the burden their futures might hold.

Do we sell Ned short? Will he be on NPR one day warning parents about creating a lesser sibling in the family?

“I hope Alex lives with me,” Ned says.

***

For more on sibs, sibshops, and Don Meyer, see The Sibling Support Project.

Alex is entering 6th grade in the fall, and he will go to a new school.

It’s been six years since we toured special-needs schools. Back then, as Jill points out, we were looking for a kindergarten, and kindergarten classrooms for the autistic don’t differ much from kindergarten classrooms for the typically developing.

So this will be new. First stop was the school of Ron’s, Alex’s old terrific EI special-educator who’s now unit teacher of a special-needs site in a New York City public school.

I got to the meeting before Jill this morning; I rounded a corner and there Ron was. “There he is!” Ron said. A friend. He’s greyer (”More dignified,” I told him) but otherwise the same spark and firm handshake.

I did know  what to expect six years ago but now, I’m unsure what to look for in a school tours.  Here are the same tiled walls, same small bathrooms, same construction paper and marker artwork festooning the corridors.

Jill’s biggest jump start on this next-level search for Alex was a phrase she heard at another special-needs middle school. “We have,” the unit teacher of that school told her, “an expectation of college for our students.” We had never heard any educator say anything like that about Alex before, and it was like a strong new scent.

Still, with the budget crunch I foresaw late last year, I was hoping Alex’s current school could make an exception and perhaps keep him another year. Better to be with the people who’ve taken you from stop-and-stares to reciting “The Pledge of Allegiance” when the money dries up.

“Then Obama came through the funding,” Ron notes.

So it’s up we look. Suddenly I have to start from square one with people who’ve sometimes seen but not really met Alex, telling them all the clever cute stuff he does. How he tricked me out of the boys’ bedroom last night so he could get the cat off Ned’s bed. How he tricked Jill into taking her hand off a doorknob once, because he wanted to make a break for it. How he says clearly, “I want cookies!”

Ron’s school was similar to the one Alex is in now — some rocking, some stimming, wheelchairs parked in the halls. Classrooms had the velcro schedules (”sweeping”; “work time”; “clean up”), the looseleaf binders of simple sentences in big print. “Who wants to read me the recipe?” one teacher asked.

The classrooms were smaller. In one, colored cloth shaded the fluorescent overheads to cut down on distraction. In another, students used a computer to read and relate the life cycle of the butterfly. Science class. “That right, a chrysalis,” the teacher said. Ron shows us yet another loose leaf with a checklist of jobs the older students here perform at a local golf course: pick up trash, clean tables, stock storerooms.

We’re looking forward to Alex’s future. He could have one here.

“If there’s an opening,” Ron said.

(Great NY Times piece on the effect of swine flu-related school closings on special-needs parents.)

[Image: Credit: Valeriana Solaris (flickr.com)]

Just seconds after Jill announced from the bathroom that Alex could squeeze out the toothpaste by himself I hear her announce, “And we have bleeding gums!”

I’ve always been grateful for any toothbrushing that Alex did for himself. They taught him at school, and after an initial shakedown - he had to remember to brush the tops as well as the bottoms - at least it was another task he could handle by himself.

But bleeding gums? My gums bleed sometime during dental cleanings, but I’m 47. Alex is 10.

So now we turn to all those things they say you’re supposed to do and all of us feel guilty for not doing enough. Floss. A Waterpik on the low setting. Elemental teeth care, which in our case will be taught against the wall of sand that is autism.

“Ned,” I say, “listen…” I fill him in the bleeding gums, and point out that Alex will often do things if he sees Ned does them and they seem like fun. Ned agrees, and flies into using the Waterpik; first thing Ned does is spray the mirror.

We’re no strangers to questions about Alex’s dental care. His teeth are yellow (mine have been too, for decades, until White Strips came along). His upper gums seem swollen, his teeth just little buds in the pink. For a while we worried that he was grinding his permanent molars down to the gums, and we wondered if he needed caps.

For a few years we’ve been taking him to one of the few dental clinics available to special-needs kids in New York. Good place, except every time we went we found a new dentist waiting for us. All nice dentists, who all said Alex was a pretty good patient in the chair (when somebody screams, it’s easy to see their teeth…), and that no, he wasn’t grinding his teeth and yes, he did have a small cavity but it was in a baby tooth he’d likely soon lose anyway.

Bleeding gums. Alex watches Ned spray the mirror, standing there laughing with me sitting on the toilet and hugging him as if he were about three. Alex giggles into his hands, which he holds over his mouth. In the grocery store, I walk Alex by the toothpaste aisle, hoping to find Elmo Dental Floss (Do they make such a thing? They should.) “Alex, this is floss,” I say.

I think we can do this. My first Waterpikking with him goes well: He laughs as the gentle spray hits the swollen pink. I teach him to brush at 45 degrees. All the stuff we feel guilty about not doing. But there’s a world of difference between feeling guilty about not doing something for yourself and not doing it for Alex.

Primer on pediatric dental care for children with autism: http://dentalresource.org/topic55autistic.html

(Image: sxc.hu)

Worst thing about Alex? Waking us up in the middle of the night. Even worse than his waking up in the middle of the night is his LAUGHING in the middle of the night. He didn’t used to do this - but about once a month, after I hear the scurry of little feet rousing me, I hear belly-shaking laughs.

Laura Kreuger Crawford mentions this as a Smutch custom in her great essay, “Holland, Schmolland,” a parody of the well-known “Welcome to Holland.” When I first read it I thought, Well, we don’t have that. But we do now. It seems to add a layer of misery to an already wrenching situation.

Cleft in the chin, devil within?

Best thing about Alex is how forgiving he is. Five or ten minutes after yelling at him, he’s back to his sweet-natured self. All is forgiven. We apologize and he accepts.

Another best thing about Alex: how unfailingly helpful he is when he knows what you want him to do. The other day I asked him to put socks away in his drawer. He did. When he came back, I had another pair of socks. No problem. When he came back, there were some pants to put in the drawer. OK! When he came back, there were some books to put on a shelf in his room. He took them without complaining.

Alex is great at setting the table. You don’t have to worry that your cup handles will face in different directions or that one place setting will be missing a fork.

Alex is standing in front of the lobster shop on MacMillan Pier in Provincetown in this picture. When I remember how happy he is there, how he remembers where everything is — this was the third time we had the boys stand in that spot for a picture — I think how repetition can have its sweet side, and how I hope we’ll go back to the Cape soon. And how I hope he can leave some of the Smutch customs behind.

Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.

Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.

And then there’s this quasi-sensationalistic statement on the CNN piece:

….many of us have never seen autism in action……

The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:

The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.

You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.

My son Charlie is, as I’ve noted here, 11 1/2 years old. He’s been attending middle school since September and it hasn’t been easy, and we’ve started to get the feeling that it’s not going to get easier. Charlie is in a self-contained classroom, located in a large middle school in our school district. There are three other boys—all older than him by a year or two, and all shorter than him—a teacher, and four aides in the room. He starts the day with Adapted Physical Education (APE) around 8.30am) and has speech therapy briefly with a speech therapist most days of the week. An occupational therapist sets up programs on specific skills, like writing and washing his face, that he works on throughout the day. He has a really good teacher and behavior consultants regularly visit the classroom. Charlie’s teacher and I email each other daily, sometimes a couple of times a day.

He does all right generally, but, for the past few weeks, he seems to be having one “incident” per day, in which he grabs at someone or throws himself down on the ground or tries to hit his head. Sometimes it happens because his classroom gets very noisy and, with his increased sensitivity to sound, he just can’t take it at some moments. Other times—as when he threw himself down on the sidewalk while on a walk outside last week—it’s less clear.

Charlie’s academic progress has always been slow and painstaking. He’s now writing both his first and last names and can write most letters of the alphabet (s seems to be particularly challenging), counting money, doing single-digit arithmetic with a calculator. Unlike the other boys in his class, Charlie is not interested in watching videos on a break (they have a TV set and headphones) and is minimally interested in the computer. It has been good that more of his schedule has allowed him to get up from his desk, to work on life skills like cooking and laundry: Charlie, as his teacher noted, likes to be busy and occupied, and to get up from his desk.

Sometimes it just feels like everything is working against him this year, though. After years of bus drivers who always greeted him with a “good morning, Charlie!” and a “smile,” and who clucked in sympathy when he was upset and assured me that “he’ll be okay, we all have our bad days” the bus driver this year has been, well, she doesn’t do any of those things. Added to this is the fact that Charlie’s bus arrives over an hour earlier than it did last year. He’s always had a hard time waking up, but this year it’s been compounded by a much earlier wake up time, and a less than warm atmosphere on the bus.

And middle school itself has been something of a brusque new world, after the coziness of Charlie’s classroom last year. As I’ve noted, the physical layout of Charlie’s room includes a low ceiling and no natural light. There’s over a thousand children at the middle school and discipline appears to be a priority, judging by administrators wielding walky talkies and the constant emphasis that “you could hear a pin drop in these hallways” when classes are in session. There’s no more playground and the main colors seem to be (as they were at my junior high in California) brown and beige.

I noted that Charlie, while the youngest in his classroom, is the tallest and, I’d also say, the most muscular and athletic (the result of all that swimming and 8-plus mile bike rides). So when he gets upset, other people react a lot differently than if he were 4 feet tall and a skinny little boy: Charlie’s the same height as some of the aides (none of whom were the aides he had last year, including one young man who was over 6 feet tall and could still give Charlie a piggy back ride a year ago). And I more than suspect, I think I know—that when Charlie is upset, people don’t see a frantic child, overcome by his anxieties and racing thoughts and unable to express himself. They see a 5′ 4″ pre-adolescent who’s really strong, and they step back, and want to look away.

Jim and I anticipated that middle school and adolescence would not be easy for Charlie. We’ve been talking a lot, talking to friends, talking to Charlie’s teacher; we’ve been asking questions, thinking, reflecting on how easy it is to go places with Charlie, from stores to subways to restaurants, and how much he helps us out, doing more and more small chores around the house. We’ve wondered if he’s not been feeling a kind of loss for his old school and classroom and teachers. After all, every day he walks onto the yellow schoolbus so dutifully and I wonder what he thinks as it takes him to the middle school, a group of low-slung brownish buildings, surrounded by grass and set back from the road.

Previously when Charlie transitioned from primary school to intermediate school (he’s not really “in a grade,” and has always been in special ed classrooms), it was really tough. He floundered and finally all but fell apart in classrooms in another New Jersey town and, just under three years ago, we took him out of school in November of 2005, things got so bad. We’re not at that point now (or not yet) but Jim and I have been worrying; it’s been hard to find ourselves potentially back at square one with Charlie’s education, after disrupting every aspect of our lives to move into our current school district. I’m hopeful that we can get ourselves, just muddle, through, a difficult period. While, at home, Charlie’s not always been without anxiety (sometimes he just seems to need to sit in his room with his favorite things nearby; he tells me “bye Mom”—-sign of typical teenagerism?), things have been generally peaceful, and he’s clearly a bigger boy who can do, who wants to, and who often has to struggle to “do it right.”

Charlie spent much of the weekend sleeping and some of it coughing: I’ve had a bad cold for the whole past week, and Charlie finally caught it. Saturday night—after napping a lot—he couldn’t sleep till 4am (and was beside himself at one point). Sunday he was much more easy-going, eager to get on his bike, and, while sitting on the couch afterwards, telling me the names of the aide last year who gave him the piggybacks. And then, of one of the aides he has this year.

And saying yes when I asked if he wanted to go to school tomorrow.

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

In her Domestic Disturbances column today, Judith Warner writes about “emotional enmeshment,” which she defines as “the boundary collapsing” that, she thinks, is the “signature characteristic of motherhood (and parenthood) in our time.” Warner scrutinizes her relationship with her two daughters, aged 11 and 8. While she notes that she’s sought to establish boundaries between herself and them:

I despised the cliché “you can only be as happy as your least happy child.” What drivel this was, I thought. What self-indulgence. Wasn’t it a parent’s responsibility to remain whole in the face of a child’s unhappiness, the better to buoy him or her through difficult times?

As the years passed, I refused to be a good Suzuki mother and sit in on my daughter Julia’s every violin lesson and daily practice. I resisted the pull to immerse myself in the girls’ school, at least in part out of my belief that they needed their own private space. I refused to dress in adult-sized versions of Limited Too clothing; I never let the expression “Awesome!” pass my lips.

And yet, with time, only the philosophy stayed intact. Emotionally, the boundaries steadily dissolved.

Despite her efforts to not overly enter the world of her children, Warner finds that she’s done quite the opposite. She is, she realizes, only as happy as her children, period: Enmeshment, Warner suggests, is part and parcel of motherhood, and parenthood, these days.

So what about for those of us who are parents of kids with disabilities? Of kids who, like my son, have many more needs than many kids? Who rely on us or someone else—-who have to rely on us or someone else—to assist with communicating, with various things (some pretty basic) that children their age can do for themselves?

I mostly know what happened to Charlie at school because his teacher and I email each other, and because she visits us and Jim and I visit Charlie’s classroom periodically. Charlie’s teacher also sends home a card (with a magnetic strip) on which is a recording of his voice saying what he did today. Charlie runs the card through a Language Master and repeats the phrase (yesterday it was “I shot a basket”).

Charlie does like the company of other children, who he tends to see mostly in planned, organized activities, like bowling, or at school. He spends a lot more time with Jim and me than most children his age. And, because his language is so limited, spending a lot of time with Charlie is the only way to understand how what he does and what he says (verbally and non-verbally) are indicative of how he’s feeling and what he’s thinking.

Jim and I long ago said to each other that, unless Charlie was happy and in a school where he was learning and thriving, we could never be happy or satisfied with ourselves, and it’s because of this that we’ve moved, given up jobs, taken jobs that we didn’t really want, made decisions that probably weren’t the best for our careers but have been better, if not best, for Charlie.

So there you have it. I’m enmeshed, though I rather suspect I would have been this sort of mother regardless of “what” my child “had.” Charlie’s being autistic, and with a lot of needs, makes enmeshment inevitable.

Warner ends her post by reflecting on something said by psychologist and author Michael Thompson:

“You cannot let your dream dominate your child’s journey.”

One hears so often that a parent finds out that their child has autism and that their dreams as are dashed and despoiled. But really, a parent has to see that what a parent wants for a child, and what that child wants for her or himself, are two separate, different things.

Of course it’s harder for Charlie to tell us exactly what it is he wants and hopes.

And on the other hand, maybe it’s also harder for us parents of kids with disabilities to listen and let ourselves really hear what our kids are dreaming of.

All That Noise Is Damaging Children’s Hearing, said an article in yesterday’s New York Times—noise from headphones, video games, computers, TVs, “power mowers, leaf blowers, snow blowers, car and house alarms, sirens, motorcycles, Jet Skis, loudspeakers, even movie previews,” not to mention music from weddings, parties, rock concerts………………….

All of which falls rather ironically on my ears since the only reason Charlie is wearing headphones is because he’s become so sound-sensitive and needs to block out noise………………….