Let’s End Adolescence writes Newt Gingrich in the October 30th Business Week. Adolecense, argues Gingrich, is a 19th century invention and, indeed, a “social experiment” that has largely failed. Why keep supporting a “system for delaying adulthood and trapping young people into wasting years of their lives”? Why not skip the whole notion of some kind of transition stage between childhood and young adulthood and stop (as Gingrich seems to suggest)  delaying the inevitability of adulthood, and have kids “shift to serious work, learning, and responsibility at age 13 instead of age 30″?

Well, Newt, let me tell you something.

At 11 1/2, my son Charlie’s definitely in the throes of adolescence. Almost all the clothes he wore last summer have either gone into the Goodwill pile, or been hand-me-upped to my drawers and (you’re gonna gasp) Jim’s. Every night when I look at the reflection of Charlie and me in the bathroom mirror as he’s brushing his teeth, he seems taller than the week before (the day before?). Jim’s been using the electric shaver on Charlie’s upper lip and, as noted before, the hormonal thing has hit big time. We had dinner last night with friends whose baby isn’t even 6 months old: Needless to say, a lot of memories were stirred up of what it was like to hold a long-limbed big-head boy in the crook of my left arm. Now he’s the one looking down at me.

I’m not sure adolescence can be done away with—-it’s part of the process of growing up. Gingrich proposes having children (I guess he wouldn’t say “adolescents” since he’s calling for the end of such a notion) start job-training earlier and start taking on the professional and financial responsibilities involved. But there’s a reason for “adolescence,” for extending childhood or (if you want to think of it this way) delaying adulthood.

Charlie, not even in his teenage years, just having started middle school, and the youngest in his middle school classroom, has already started pre-vocational training. Folding laundry, cooking, food prep, vacuuming—-these are “life skills” on his IEP, but they also fall under the “pre-voc” category. We continue to teach him writing, reading, simple arithmetic; we often have to really emphasize how he needs to keep studying these things: Because everything about Charlie’s learning has to, already, be “functional.”

The purpose of Charlie’s education doesn’t have to automatically be to teach him to “get a job” and “use his skills.” I continue to teach him cello and piano. Just as much as any child, Charlie needs to have all areas of his education addressed and not only those that are “functional.” For a child like Charlie—whose academic program is far different from that of his peers and who’s going to be in special education for the rest of his schooling—-there’s just as much a need to develop his abilities and his interests and to expose to the arts, to music; to provide him with what you could call as much of a liberal arts education as possible. It’s music and sports that play a role in helping Charlie to allay some of his anxieties, do something he’s good at, and develop interests that could potentially be lifelong. Sure Charlie needs to learn skills for a job that will drawn on his abilities, like that of 22-year-old Andrew Janusz, but work is one part of the big picture.

When the talk turns too much to teaching Charlie “pro-voc” skills and our requests for music lessons are greeted with “oh sure” and bland nods and suppressed rollings-of-eyes, I hear the voice of “hurry hurry hurry.” Adolescence is not turning out to be the easiest of times for Charlie, who I suspect must often be feeling like the same kid he’s always been, but in a body that’s becoming an adult’s. Charlie needs time to grow up. It’s taken him longer than most kids to learn to do so much, why push him (not to mention other children) ahead so fast? What’s the rush?

Muggy and hot on Sunday so—-after a morning of typing and working and Charlie getting up, piling his laptop and a blanket and a couple of old toys and his Leapster on the couch, with a layer of breakfast crumbs underneath, and dozing off so soundly that my vacuuming some of the crumbs didn’t wake him—we packed up the car and went to the beach. In the past, there’s no lifeguards after Labor Day but we’d learned there would be some at certain beaches, so to one of those we went.

Also in the past, we have been hesitant to go to the beach once Charlie has started school. The transition from beach mode to school mode seemed too jarring: Charlie would be excited, would be thrilled, to be back at the beach and swimming and eating his fries and burger. Then, he’d become a little upset when he requested the ferris wheel and was told that it was closed; driving by and looking at the giant, still wheel, led to more nervous sounds from the back seat. But driving away and going up the Garden State Parkway—–Charlie’s distress became loudly, physically apparent.

I still sat in the back seat with him then and won’t ever forget one ride home in early November. I don’t know if the car shook; Jim drove home as fast as he legally could while I tried to hang onto Charlie who was aiming his head at every possible surface and back arching like a gymnast. We got him home and Charlie lay down on the couch and at the mention of the word “school,” everything started up again. In the midst of it all, Jim and I decided, that Charlie was not going back to school the next day.

Charlie never went back to his classroom in the school district of the north Jersey town we lived in then. He stayed home for over a month (my mother had to fly out on short notice to stay with Charlie while Jim and I worked) and many difficult moments followed, including some terse and tense exchanges with the Assistant Superintendent of the school district and the social worker who was Charlie’s case manager. Charlie went back to school in mid-December, in a private autism school where he started, after some unhappy years, to like school again.

But no going back for day trips to the beach, Jim and I sadly agreed. We had heard about Surfers’ Healing some years ago, but because the New Jersey and New York surf camps always seemed to fall around the time that Charlie had school, we thought better of going, until this year.

Going down to the beach today was, I am happy to report, not a big deal, and just plain good fun. Charlie was drowsy when I roused him at 1.30pm, then lively and chatty in the car. He ran for the beach while Jim and I were still gathering our things and stopped to wait when I called him. The water was warm, though very salty, with short, choppy, rocky waves (made to order for Charlie) and there were lots of people. Charlie, with Jim beside him, was soon jumping in the waves and ducking under the water and running his hands and feet in the sand, and running excitedly beside the ocean. He was completely covered in sand when we left for a public shower that’s a bit of a drive away; after a couple of no’s, Charlie got under the (cold) shower and I was able to brush some of the sand off of him. (I was able to get more off the back car seat.) He kicked around the gravel while waiting at a picnic table for takeout and expressed his exuberance.

There was a couple with a baby at the next table. “There’s cheese, and bread, and peas, and carrots,” her mother said. A sippy cup and two Coronas were arrayed on the table. At another table, a mother was helping her preschool-age daughter into a pink hoodie. “You know what?” said the daughter. “I don’t want to ever be a big girl. I don’t want to be grown-up, like you!” Her mother was trying to dole out forks and napkins and food containers to the table’s occupants. “Well, you may change your mind when you get older,” she said, eyes elsewhere. “No,” said the girl.

And I so wanted to assure her, this getting bigger business, it’s not to be feared but just lived and then one day (like one hot day in mid-September) you see all the changes and what they add up to.

A new study by sociologists and social work researchers from the University of Chicago and University of Wisconsin-Madison has found that parenting children with disabilities becomes less taxing over time. From today’s Science Daily:

…….over time, parents learn to adapt to the challenges of caring for a disabled child. As these parents age, the study shows, their health more closely mirrors the health of parents with children who don’t have disabilities.

The study, Age and Gender Differences in the Well-Being of Midlife and Aging Parents with Children with Mental Health or Developmental Problems: Report of a National Study, is published in the September 2008 Journal of Health and Social Behavior.

Am only speaking for myself—-but, for Jim and me, parenting has gotten easy over the years. Charlie still requires 24/7 care, still has a tendency for “difficult behaviors,” struggles in activities with his peers. But his understanding and willingness are great and growing; sure he’s a big kid—-taller, bigger, strong than me—-so yesterday, he carried two heavy bags of groceries to the car, put everything away, used the microwave to heat up a snack. He has to get up over an hour earlier to catch a 7.20am schoolbus and, while he’s not thrilled about getting up, he has been doing this, and getting dressed, and walking out the door, and being generally cheery, and us “Schoolbus here” and “School!” During the summer, while my husband endured a serious back injury, Charlie displayed deep degree of patience and understanding about how much more he’d have to do for himself.

Things can get better, maybe not all the time—sometimes is good with me.

On Tuesday night Charlie faked needing help. On Wednesday afternoon, he helped himself.

We went bowling with our little “special needs bowling league.” We ended up sharing a lane with a boy same age as Charlie, with an older and younger sister—both of whom were easily assisting their brother. They brought over a metal contraption with a roller coaster-ish chute and set it on the lane. (”What’s it called?” I asked to the younger girl. “A ball ramp?” was the answer.) The other boy, his older sister gently guiding him and rubbing his back after he sent the ball rolling, went first. I directed Charlie to do the same the first time; he then did it on his own twelve more times (someone turned off the electronic scoreboard and deleted everyone’s scores, so we had to start from scratch). He got the ball each time on his own, carefully rolling it over to find the holes and sticking his fingers in, before carrying it to the ball ramp (if that’s what you call it).

We went swimming afterwards at the YMCA. (Maybe my suggestions were heard, but the pool seems to be open a bit more than in the past, and not just the family/wading pool.) It was a really hot, muggy day and Charlie jumped in on his own and went across the pool while hanging onto a huge green and yellow log-like flotation thing. He swam back, got out, and pulled a red and blue foam boat—it can hold a couple of kids—into the water. Then he was off, pushing the boat to the deep end, almost diving off the seat to the bottom, pushing the boat around while he kicked up a storm, and then (having literally jumped ship) backfloating lazily and just hanging in the water, and so not in need of me that I swam a lot of laps.

Charlie got out before I did, and waited for me at the side of the pool.

Ok with me when he takes the lead and does so much on his own.

Don’t know about you, but summer has so far been anything but slower-paced and lazy around here. A friend who’s also an academic likes to say that he got into “the business” for the three-months summers:  guess I take after Charlie, though, and do better with the same old same old routine of things. I’ve taken on some, or rather, some more administrative duties at work and start teaching summer school next week (a course on Psychology and Literature for high school students—-I suspect I’ll have some things to say regarding it here). It’s also Freshman Orientation time, and this morning was filled with calls to students about classes, putting together readings for the course, planning for a big activity next March the very thought of which is kind of exhausting me, emailing back and forth with Charlie’s teachers about a loud noise desensitization program, grabbing Virgil’s Eclogues to translate with two students for two hours.

Jim and Charlie picked me up at 3pm and Jim went to work on his book and Charlie and I went bowling and then swimming—-well, Charlie swam and I sat down to watch. Until he was 9, Charlie being in the pool meant I had to be in the pool. He’s a better swimmer than me but I felt I had to shadow Charlie. There might be excessive splashing or bumping into people or the wall while Charlie swam on his back, and I dreaded when it was nearing a quarter to the hour, as this meant Adult Swim and I had to drag Charlie out. And I doubted that Charlie would hear me calling to him from the pool’s edge.

He does now, and has been for the past year and a half and while I don’t think I’ll ever be a magazine/summer novel reading mom (though I did find myself in possession of this book, which I read through while Charlie took his usual excessively long shower in the YMCA’s family locker room), I usually watch Charlie swimming from the sidelines. I still get plenty splashed and walk him up the stairs to the water slide (especially if there’s a line), but now  there is a bit of a (brief) sit-down and almost relaxing aspect to going to the pool.

Kind of amazing, I would have thought before, and a sign of how Charlie changes and—far from being a toddler in an adolescent body—how he, slowly yet surely, matures.

While I found much that recalls our live raising Charlie in the stories of four Wisconsin families in an article in the July 2nd Capital-Times (Madison, WI), I am uncertain about the title, which is “Arrested Development: Day-to-day struggles of autistic children affect entire family—-which seems to imply that life with autism, both for an autistic person and for her or his family, brings everything to a halt.

On the one hand, it’s true. I do feel as if my life came to a halt of sorts when we found out that Charlie had autism, and there’s been many many times when we’ve stopped projects, career plans, even classes with students opening their textbooks, to take care of Charlie. I don’t regret any of these moments.

On the other hand, Charlie’s development, while not “normal” and sometimes seeming to move eight paces back for every seven forward, continues. I’ve noted his evolving emotional awareness; it’s not only in the pool that he can walk by himself, but also on the sidewalk and even in a store parking lot (though I’m still fast to grab his hand and nervously watch every car). To the random outsider, Charlie does plenty of things that are baffling and don’t seem at all age-appropriate, but I’ve my own internal mom-scorecard, and I know where he started from, and how very far he’s grown, how he’s traveled.

How much Charlie’s changed, could not have been predicted when the word and the reality of “autism” entered our lives in early 1999. At the time the word seemed like a burr that’d gotten stuck in our throats; how it’s evolved into something tall and strong and lovely and unique.

So puzzling—-and at a time when bills for insurance coverage are being passed in different states and when a Michigan is suing another insurance company for autism treatments—–to read about the mother in Massachusetts who failed to seek cancer treatment for her now 8-year-old autistic son. The mother, Kristen LaBrie, was arraigned Monday in Salem District Court and pleaded not guilty to one count of child endangerment; she was released on personal recognizance:

In a police report filed in court, Salem police detectives said the child [Jeremy Fraser] had an 85 to 90 percent survival rate when first diagnosed. He was to get five stages of chemotherapy at Massachusetts General Hospital in Boston and at home, which was to be administered by LaBrie, police said.

Police said in the report that LaBrie changed her son’s appointments a dozen times, failed to administer medication, failed to pick up medications at the drug store and, as a result, “his cancer has returned quicker and stronger.”

[Eric] Fraser [Jeremy's father] said he could not co-parent with his former wife and that tensions grew so high he withdrew from directly caring for his son, fearing that continued contact with LaBrie would end with him facing criminal charges. He said he continued to pay child support but did not see his son from early 2007 until December 2007.

In mid-February, the child’s doctors at MGH intervened after seeing the boy’s medical condition had declined, Fraser and police said.

He said he does not know why LaBrie allegedly failed to get life-saving care for her own child.

I don’t think he’s alone is not knowing why……and what might have happened if…… There is hope and there’s so much we can do, more than we think.

Sometimes now—when, for instance, we’re walking on one of those parking lots—Charlie says “Mom, hand!” and reaches to hold my hand. We walk a few paces and he lets go and walks before me, and I know all I have to do is follow.

The June 29th Herald (Sharon, PA) describes a program that helps young autistic adults transition from high school to adulthood. The program is run by St. Anthony’s Point and St. Michael’s Harbour, Inc., Hermitage. After participating in it, 23-year-old Michael Mondak is working in the Community Library of the Shenango Valley and matriculating at the Shenango campus of Penn State University; 20-year-old Shane Myers is working at Farrell Golden Dawn and Big Lots in Hermitage, and will soon be working full-time. Both note that, besides work and life skills, the program has taught them something more:

…..the program seems to have taught them a lot about themselves as well as career and life skills.

Myers said it helped him see that his disabilities wouldn’t stop him from getting a job. And the staff is nice and willing to help with anything, he said.

Mondak said it helped him to find a job that suits his strengths and to help him develop friendships.

“We’re no different than other kids, other young adults …,” Myers said. “We can get a job like regular people. We can do anything a regular person can do but it may take a little longer. Or we might pick it up faster than regular people, so there can be some plus sides.”

Indeed, a lot of plus sides.

Charlie kept saying this very phrase—-”You know you have the answer“—over and over as we drove home from the beach last night. He had a big smile on his face; he’d been calling out the name of his teacher and favorite instructor (as aides/paraprofessionals are called in my school district) over and over. It was a squelcher Sunday—over 90 degrees—-but Charlie and Jim had still gone for an hour-plus bike ride (with a stop for sodas in an air-conditioned convenience store), and a trip to the ocean was more than called for.

It was nearing 4pm by the time we had gathered towels and changes of clothes and found the suntan lotion. I urged Charlie to take off his fleece vest and hooded coat, in favor of a lighter blue sweatshirt. “It’s hot today,” I said, looking at Charlie bundled up for the crisp fall day it wasn’t in the backseat of the black car. I reminded him about how he’s been learning about wearing the right clothes for different kinds of weather at school, and pushed my own damp hair off my forehead. Charlie slowly unzipped himself out of two layers of outdoor survival weight fleece. My first thought was to insist he bring the fleece inside but then I thought, what’s the big deal if it’s on the backseat?

And so, the air-conditioning at low-blast, we went south on the Garden State Parkway. A line of cars was headed the opposite way as we drove up to the parking lot; Charlie’s smile was instant the moment he ran from the car and all the way down the sand, pausing only to take off his black suede slip-ons and stuff his socks inside. (He would have left them there in the middle of the sand but I called him to pick them.) He pulled off his shirt, handed it to me, and was in the water.

The ocean was 60 degrees and I took my time walking over the pebbles. Charlie, with his usual perfect timing, ducked down flat and the waves crested over him entirely. Jim jumped just in time; I got wiped out. Charlie grinned and started swimming out to sea. Jim went out with him and then part way and I went as far as I could (until a bigger wave was gathering). With calls of “Charlie, come in closer to the shore” and over-elaborate arm gestures, Jim and I beckoned him in and, taking his time to splash and catch a few more waves, Charlie ventured back in.

Since last summer—when Charlie started to swim the farthest out of all the swimmers on the beach—Jim and I have been thinking about how to teach Charlie that he can swim out far, but not too much, and that he has to come back to the shore when we, or the lifeguards, call him. These aren’t simple and discrete skills to teach like the “non-verbal imitation” and “receptive/expressive” language programs Charlie did when he was 2 1/2 years old and in an intensive ABA (Applied Behavior Analysis) home program; they aren’t skills that his current teachers can write a program for.

Again and again Jim and I show him the orange flags that mark the space between which he’s to swim in, but it’s a quite abstract concept to imagine a line demarcating “this is where you swim” from the flags out into the water. And what 11-year-old boy who swims like a fish wants to know there’s a limit on where he can go? It’s a problem and we’ve begun to work on a solution, to find others to swim with Charlie and maybe teach him, too (Charlie had surfing lessons last summer—definitely hope to do those again). (And we’re signed up for Surfers Healing.)

It’s possible (not that I tend to see things this way) to think of life with Charlie, life raising an autistic son, as having to solve one problem after the next, from the moment a daycare teacher said “We have concerns” (winter of 1998 in St. Paul, Minnesota) to the moment a school administrator said “Have you thought of a helmet?” (winter of 2005 in northern New Jersey). Charlie was born in 1997 and diagnosed with autism in 1999; his entire life parallels an explosion—an epidemic, if you will—in treatments, research, and awareness about autism. We’ve tried plenty of treatments (biomedical as well as educational) and settled on making Charlie’s education and schooling the focus—the means to helping him reach his full potential and lead a good, full life.

And the source of the best answers for what to do has been Charlie himself. It’s been my constant lesson as his parent to understand when some goal—”reading from a book”; “mainstreaming without an aide”—is something that I want, but maybe it’s not what Charlie’s ready, or suited for, at the moment. And accepting this discrepancy between my parental idealizations and the reality of Charlie—-my lovely boy, who responded to my “come back to the shore” gesture by turning around, walking towards me, and jumping a few more waves besides some dark-haired boys just about his age—-has been the beginning of truly helping Charlie to grow and thrive.

You know you have the answer.