So 35 states and the District of Columbia now have laws related to autism and insurance, and the Virginia House recently became the latest to pass such a measure. Virginia’s bill, which is typical (ha ha!), would provide health insurance coverage for treatment and therapies for children between 2 and 6 diagnosed with Autism Spectrum Disorder. Benefits are capped at $35,000.

I don’t know if we have autism insurance in New York. When I got laid off two years ago and the HR lady talked me through the then-future of my benefits coverage, she stressed how I might want to keep medical coverage as long as possible for my autistic son. Then, in a rare moment for me during the whole lay-off extravaganza, I got to flatten somebody else. “There is no cure for autism,” I said quietly.

Treatment and therapists only? As my wife Jill says, “You don’t ask, you don’t get!” So:

Name of Claimant: Jeff Stimpson
Date of Claim: February 6, 2011

Reason(s) for Claim: Alex refused to settle down during the Super Bowl at my sister-in-law’s and bulled around utterly uninterested in even that kid’s Darth Vader car commercial like a typical (ha ha!) person. Then Alex knocked over my red wine and stained my sister-in-law’s carpet. Sister-in-law agreed with claimant’s wife that Alex “needs medication.” Claimant doesn’t want that.

That could go through – carpet-cleaning isn’t cheap, and we’ll get an original receipt. Now that I think about it, formal help with an emergency (and what else is insurance?)  is needed elsewhere in our lives, too.

Name of Claimant: still Jeff Stimpson
Date of Claim: Last haircut

Reason(s) for Claim: Alex refused to sit still yet again. “I can’t do this if he won’t sit still,” barber said. Went to second barber shop. “He has to sit still,” second barber said. Claimant refuses to take his 12-year-old to the toddler barber joint that has always cut Alex’s hair and have him sit in the big plastic jeeps and watch Elmo while he gets a haircut and, soon, a shave. Request funding to bribe barbers.

Date of 2^nd Claim: Future

Reason(s) for Claim: Alex bolted off the sidewalk and into traffic. Then he darted into the elevator of our building and made the neighbors stare by punching the buttons for about six floors. Then he watched Elmo for an hour and shoved claimant’s wife away – he’s getting big now – when she tried to shut off the booming TV, then she fought with claimant over medication question (see Claim 1). Then a few days later we had to leave a family event or a restaurant or the circus early, or one of us – often me – never got to go at all, convincing ourselves that the event wasn’t fun for Alex anyway, and certainly not worth the stares and what we’ve become sure is the pity. Then we felt bad that we still hadn’t hardened ourselves to this life, and probably never would. Note that claimant also had no idea there was insurance for this shit.

My wife Jill and I recently visited the classroom of my autistic 12-year-old son Alex, where a boy, Alex’s classmate, was drawing bright splashes across the screen on his lap.

“iPad,” I said to Jill, who drooled. She’d just bought an iPod Touch, and she’s swiftly became obsessed with it and its apps.

Wow. Somewhere amid the shriveling budgets my son’s 6:1:1 class got its paws in eight iPads (in fact, Alex’s special-needs school just got a $200,000 overall technology grant). “Apple is going to save the world!” noted a reader on Twitter. Being unemployed and growing more unemployable (I worked in publishing), I see the future as hopeless. Yet how can I maintain my pessimism as the dad of a pre-teen with autism when somebody coughs up two hundred grand to help my son?

Well, I can still fall back on Alex’s speech still being primarily screeches and Rain Man-y mutterings, fall back on Alex’s waking at 4 a.m. and rocking crazily in his bed and chattering almost like a squirrel. I can fall back on his dawning sexual awareness, which in the autistic can be its own special nightmare. And I can certainly always rely on Alex still loving, on the cusp of puberty, Elmo.

“In my opinion, we should encourage Alex to verbally communicate as much as possible before getting him reliant on these tools,” his service coordinator has said; she’s looking into funding for Alex’s personal iPad. “It may be helpful to get a professional opinion on whether this can benefit him, though.”

Alex’s school must have gotten a volume discount on the iPads, like the one they recently got the on PCs that came with no CD-ROM drives, and the ones they must get on the latex-free, powder-free rubber gloves they go through at about a hundred a week. I didn’t know this, but special-needs schools use these gloves for everything from feeding to toilet training, and by the time the gloves run scarce in a school like Alex’s they’re as precious as cigarettes on the WWII black market. Does Apple ever run out of rubber gloves?

Alex’s teacher welcomes my suggestions about apps, and she seems enthusiastic about teaching Alex with this new tool, much as a teacher must have once been excited with the idea of teaching with the first pencil. Don’t get me wrong: I hate the alternative, where Alex’s school would get the worst of everything all the time. These are iNuggets of promise. And they are really cool: I watched Alex’s classmate swipe explosions of color – or at least pictures of explosions of color – across the book-sized screen.

Leaving aside that Alex tries to access TV shows on Preschool On Demand not by pressing the buttons of the remote but by pressing his fingertips on the TV screen, I’m left to answer: What is this teaching him? Will it help him survive? Stand up to people who want him to eat in his classroom? Keep him off a park bench in 30 years? Or will he simply use the big Pad to find, and I know there must be one, an Elmo app?

Photo by ad-tech

“Never volunteer!” is the old army adage. “Volunteering looks great on the resume!” is the old job-hunter’s adage.

I was never in the army and never will be, now, as I’m 48. I am, however, coming into my 19^th month of unemployment and I have a son with autism, so I thought it would be a wholesome idea to devote my time and talents to volunteering for his school. Plus I’m looking for a job – who’s kidding who – and showing up at a school and nagging professionals to put together newsletters or hold parent socials or do something they’ve wanted to be doing for a while anyway but never got around to might be a good way to get noticed when the money finally loosens up.

Why yes, this no-longer-so-young young go-getter would make a splendid addition to our team of paid people! Does that ever happen anymore?

The first initiative was to join the School Leadership Team, where parents and teachers meet once a month to discuss everything from T shirt sales to political action when New York City talks about closing or overcrowding schools. (I don’t feel completely certain the teachers want me there – they claim to, but what else are they going to say? This is the brand of cynicism I honed in the private sector.) “SLT’s used to have a lot more power,” someone told me when I joined, but I find power enough (and the longer you’re unemployed, of course, the less power it takes to top you up).

Last spring I soapboxed in public hearing after public hearing as the SLT Representative speaking against a move that would overcrowd Alex’s school. It was fun: part craftsmanship, part showmanship, like a real and satisfying job. And just last meeting, I floated the idea of a kind of MovieFone for our schools that would allow parents to call in and hear a recording about the important school stuff coming up over the next few weeks.

The ideas and hearings don’t seem to be getting me much noticed by name, but of course “that’s not why one volunteers” is the old volunteer’s adage.

Next, I’m helping put together something we call socials: parents and teachers getting together not in the formal 1950s-style PARENT/TEACHER CONFERENCE, but over knitting or a jigsaw puzzle, getting to know each other without the desk between. (We held one last year and whipped Alex’s science teacher at Sorry.) I got the idea while I was I doing a (paid) presentation at another school a few years ago and the subject of parent involvement came up. I tell myself that this is a good thing to do – make people more aware of what the other guy is thinking; bring together people who may have to team up to fight in the coming years of scarcer money. Which these days is another good reason for one to volunteer, isn’t it?

Finally came newsletters, a category that meshed my professional skills (what the rust has left of them) and the need for schools and parents to keep the communication flowing. We’re working on a monthly, one 8 ½-x-11 sheet, English on one side and Spanish on the other, with pictures, calendars, messages from teachers, and some evergreen stuff I crib from the Net on such topics as where to get your kid’s hair cut or how to get through holiday parties with your autistic child. I envision a network of newsletters, one for each of the several sites that Alex’s public school operates, with me coordinating copy like an eight-armed Perry White working on different editions of the Daily Planet. Except Perry White got paid.

Photo by Pennington Library

“The proportion of people jobless for six months or more has accelerated in the past year and now makes up 46 percent of the unemployed. That’s the highest percentage on records dating to 1948.” – Washington Post.

I think it was The Washington Post. Who can remember? I’ve fallen through the cracks, entering my fifteenth month of unemployment. I was laid off in May of 2009 from publishing, a field that had been driven to its knees by the Internet long before the economy kicked it in the head.

“You couldn’t have controlled either of those factors,” friends tell me.

Now my workday includes browsing online job boards, e-mailing resumes into the void, and going down at 3:25 to get my autistic son Alex off his school bus because he can’t be trusted to come in by himself. I’m looking up at those with jobs, trying to ignore the every-man-for-himself glint in their eyes, trying not to see myself in the phrases of economic news like “long-term unemployed.” Trying to not pay attention to the dispiriting trends, just like I didn’t pay attention to them when I came to New York City alone from Maine in 1984. Back where I’m from, nobody came to New York alone! To live!? I was unemployed for a while then too, but a different kind of unemployed, an energetic, brave unemployed that I’m still proud of and that was somehow in my control.

It’s now seventeen months. A blip these days, a stint that for almost seven million Americans threatens to stretch into an era.

Last time I was unemployed, Ronald Reagan wasn’t half-way through his first term. Back then, those without a job were not as likely as today to stay without a job, turning into the professionally unemployed. Back then you didn’t have online job boards, ads reading “The unemployed need not apply.” I wonder in the empty afternoons if our society has turned a corner: For most of my adult life, we’ve been, if not comfortable, at least accepting of have-nots in our landscape. In doorways, in food bank lines, on park benches. They used to be the down-and-out; now, I think, they’re more the down-and-unemployed, and they’re mushrooming.

Oh, I’ll find work—maybe not a job in the sense I’ve come to understand a job, but work—and so will my wife. Problem is, I never thought I’d have an autistic son, either, another trend I’m riding that robs me of any wisp of control.

Alex is 12 now, suddenly just 10 or 15 fiscal years from heading into the world. His school suddenly talks “job training.” The top of his head reaches my shoulders. He rocks in his seat on the bus or subway —or on the park bench—and demands “Music!” or “Pretzels!” or “Cookies!” at the top of his voice. The other passengers often look. At home, he sticks his hand down his shorts; he shaves a little now, and still watches Elmo a lot.

A have-not in training? Throughout my adulthood money has really only flowed, like oil from the bottom of the sea, for corporate retail. I try to not think how the next decade may swell populations even further beyond the cash to care for them, and how after a time no one will even bother looking anymore.

Photo from FDR library

I read If a Tree Falls: A Family’s Quest to Hear and Be Heard, by Jennifer Rosner, in one big gulp and loved it.  As the parent of a special needs child who required an army of early intervention specialists along with a battle plan, I loved how Rosner got so many of those details right.  How it’s heartbreaking, yes, but also thrilling and surprisingly fascinating, like enrolling in a graduate program you never applied for.  There’s a million books to be read and theories to research.  Rosner’s daughters are born with congenital hearing loss, ostensibly a disability that has little in common with autism, which my son has, but I was struck by one similarity that Rosner uses to great effect.   Oftentimes, a child’s autism diagnosis prompts parents to look a little closer at their own family tree and find threads of the disorder throughout—the unmarried uncle who rebuilt toasters all his life, the aunt who recited facts at every family gathering.  It’s a way of understanding the mysterious people we’ve known all our lives and never understood.  Rosner’s take on this is stunning because it involves such heartbreaking secrets, kept for reasons we can’t fathom today, and her own mother who becomes a beautifully rich and complicated character.

You can order the book here. And you can listen to Jennifer give a reading at the Broadside Bookshop in Northampton, Massachusetts, on September 14. And now my interview with her:

Cammie:  You do such a beautiful job of writing about all kinds of isolation that goes along with raising a child with special needs.  I especially loved how you wrote about your own mother, and the distance you felt from her, partly owing to her own hearing loss and partly owing to all the complicated emotions surrounding it.  You write about her with honesty and also a great deal of compassion. When I tried to write a memoir about the early years after my son’s autism diagnosis, I found it too hard to wrestle with all the attending aspects (my marriage, career, own childhood, etc.) and ended up using the material to write fiction instead.  What was the hardest aspect of encapsulating so much for you?

Jennifer: Certain passages were especially difficult for me to write. From an emotional standpoint,  writing about my mother was hardest.  I wanted to be honest, but not hurtful.  It was doubly difficult, because my childhood memories were often elusive—grounded in emotional truth rather than the details of “scenes.”  I felt I had to create mosaics in places, rather than narrative storylines.  I’m certain, though, that the writing process helped me to understand my mother’s experience (with hearing loss and other losses) and to gain compassion for her in ways I hadn’t before.  It also helped me to gain a clearer understanding of my own challenges as a parent, and to gain compassion for myself as well.

From a craft-based standpoint, establishing the overarching structure of the memoir was hard. Trying to balance the narrative threads (the contemporary story of raising my girls, the story of growing up with a hard-of-hearing mom, and the storyline of my deaf ancestors) and to braid them together—this was a huge challenge.

Cammie:  Some of my absolute favorite sections of your book are the imagined storylines of your deaf ancestors, especially in the second half after they first come to America.  How did it feel to write these sections and do you have any plans to give these characters their own book at some point?  Or write more fiction perhaps?

Jennifer: Inventing stories about my deaf ancestors was very cathartic for me, because the pages of my writing journal became a screen on which I could safely project my worries and hopes.  I’ve considered continuing on with the historical account.  I’d like to explore the evolving distance between Nellie and Bayla, and their mother, Pearl, as they settle more fully into their lives in America.  But at the moment, I am at work on a novel filled with contemporary characters.

Cammie: What writers—especially memoirists—inspired you as you wrote?  What do you think are the most important qualities to effective memoir writing?

Marilyn Abildskov, author of The Men in My Country, has been a great inspiration, and has taught me a lot about creating scenes and braiding storylines.  Other writers who have inspired me (particularly in the course of my writing of If A Tree Falls) are Catherine Newman, Jo Ann Beard, Lilian Nattel, Ivan Doig, Geraldine Brooks, Nicole Krauss, and Jonathan Safran Foer. They are all writers with wildly different talents (and many of them write fiction). Yet, in addition to beautiful prose, round characters, and sensitivity to language and place, there is an emotional honesty in their work.  I think this is a crucial element for memoir and fiction writing.

Cammie: Your girls come off as wonderfully resilient and resourceful creatures.  How old are they now and how are they doing?  What are recent challenges they’ve faced?

Jennifer: Sophia is 9 and Juliet is 6, and they are both flourishing.  Juliet has taken up violin (and Sophia has taken to turning off her hearing technology when Juliet practices).   Right now, many of the challenges are “social”—Sophia has just started to have friends sleep over.  She doesn’t sleep with her hearing aids on, so her friends need to remember that she wouldn’t hear (and that she would be excluded) if they were to whisper once the lights go out.

Cammie:  How conscious were about the how your family and the people you were writing about would react to this material?

Jennifer: In early drafts, I tried to allow myself to write whatever I was moved to write, without censoring for any particular audience.  As the material started to take shape as a book,  I have to admit it was hard not to be sensitive to the fact that my family, as well as deaf people of varying philosophical outlooks, would read it.  In the editing phase, I worked hard to stay true to the feelings expressed in the early drafts, even if in places, I softened the language a bit.

Cammie: What are your future writing plans?

Jennifer: I’ve started a novel that explores the notions of home and of exile.  It takes place in Haifa, Israel.  I’m at the very beginning.

Top photo of Juliet, Jennifer’s daughter, from Wondertime

Photo of book and photo of Jennifer from The Feminist Press

For five months I’ve had a part-time job doing surveys for the New York State Office of Mental Retardation and Developmental Disabilities. For this job, I talk with adults who have developmental disabilities. According to the script I’ve been issued to use when setting up appointments, I’m asking about the lives and services of these adults, and stressing that all the questions and the survey itself are voluntary.

Some of the parents of these adults say they’re not interested in having their kids take our survey in any way (which to tell you the truth is kind of what I imagine myself saying if someone calls my son for this 10 or 15 years from now). We also explain that the answers will have no immediate impact on anyone’s services. The state has told me to say that they’re just trying to figure out how to deliver services better in the future. I try to fight my suspicions that these surveys are just helping the state figure out ways to cut services.   

“You will meet a lot of interesting people,” my supervisor told me when I was hired.

My “self-advocate”—a lovely 22-year-old woman with high-functioning autism—and I sit down with the adults, and sometimes with the adults’ service coordinators and parents, and ask questions like, “Are you ever afraid at your day program?”; “Would you like to have a job in the community?”; “Do you feel you have the experience necessary to make big decisions in your life?” Usually the answer to that last one is a quiet “no” or a couple of wordless shakes of the head from the service coordinators or parents. Sometimes it is a clear “yes,” though.

I certainly have met a variety of interesting people. One young man (they’re called “consumers,” I’ve learned) said nothing clear but seemed awful sharp at Nintendo. Another young man laughed and laughed and delighted in answering all questions “No!” One 42-year-old woman lived in a wheelchair; her tired-looking mom had to wipe the drool from her chin. “They told me I couldn’t care for her for so long,” her mom told me. “I’ve made it my mission to prove them wrong.” We’ve had to cancel a few of the surveys because the “consumers” parents were in the hospital.

Still other consumers seemed a lot less challenged than many of the bosses I’ve had.

“Are you ever afraid when you’re out in your neighborhood?” “In the past month, have you eaten in a restaurant or coffee shop?”

“What do you mean?” one young man replied. “You mean like at a nightclub or some shit like that?”

Often we do the surveys in people’s homes or at their day programs. Since my Alex (who is autistic) is only 12, I was never up to this point sure what a day program was, but I can see now that it’s the kind of place he’ll spend his time in about a decade (unless of course New York decides that one way to better deliver services in the future is to cut the funding for day programs).

I imagine Alex’s survey. I imagine him bolting from the conference table and repeating “Watch Elmo!” Over and over while I sit there wordlessly shaking my head.

“Do you have a best friend you do things with?”

“Do you think the staff you work with have enough training to meet your needs?”

I don’t know. 

Photo by gregcookland.com

Autism Awareness Day is coming into its third year, still seems be going strong as a “global happening”. Those with an interest in the global happening of autism—and I certainly have one, as I sit here listening to Alex, my autistic 12-year-old, blasting Elmo from his bedroom—are encouraged to send autism ribbons, speak to local groups about autism, create a “local community autism movie night,” and wear autism awareness merchandise.

Two years ago, a friend wrote me, “I tried to find you a ‘Happy Autism Awareness Month!’ card, but I couldn’t find one.” I don’t know if they have cards yet (though they seem to have about everything else) but I guess awareness never hurts. I hear stories from the old-time parents of what life was like with special-needs kids before there were any services, and of course I understand that whatever respite, recreation programs, or help for Alex my family gets today came about because somebody fought for years to make people aware that these services were needed: spreading the realization that life with special-needs was hard enough to render most parents unable to contribute anything to society other than a thin line of their own sanity; spreading behind something better for the special-needs families to come.

But after just three years, Autism Awareness Month reminds me of St. Patrick’s Day, which is the one day of the year when my old friend Sean, who is third-generation Irish, refuses to wear green. “I’m Irish every day,” he says. True. Every month is autism awareness month in our house.

Awareness can also mean many things, cards or no cards. A few years ago, an autism center here ran ads all over New York that read like ransom notes to parents from autism: “We have your son. We will make sure he can never live on his own…” I suppose they made people aware, but I agreed with my wife Jill that they read more like an art project than like an advertising campaign. Not to mention, what exactly were the ads advertising? “Well,” said my boss Howard, a heck of a smart guy, “if you make people upset and they do something about it, that’s good. If you just make people upset, that isn’t good.”

I have to wonder what such awareness accomplishes in the long run. I wonder that because my life is immediate (“Alex, turn it down!”) and I no longer have the energy or the hope for the long run. In the short run, though, maybe “awareness” will cut down the number of stares Alex and his dad get on the street and in stores, cut down the syrupy looks of pity, cut the mutterings of “retard.” Mutterings, I know, that used to utterances, and before that were proclamations. At least we seem to be kind of done with that.

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax.  Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child.  “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.”  Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

It’s almost too grim a scene to contemplate for long: The two of them alone in that room, her son dead for at least a day when the police broke in and found Jordan near death herself.  Even so, the media pile-up on her has been swift and decisive. Branded as a “Momster”, obsessed with perfection, unable to deal to with her son’s autism.  Across the internet, lurid posters can’t help but point out: she spent more time writing her twenty page suicide note than in successfully committing suicide.

The only group who has stayed surprisingly and almost universally silent on this story seems to be parents of autistic children.  As one myself, I suspect this isn’t because we sympathize exactly, or all secretly harbor dark fantasies of checking into posh hotel rooms and grinding Ambien tablets into applesauce to end our sad plights.   I don’t know anyone on the cusp of such a dangerous place, but I suspect the whole story evokes an image we recognize at least a little: a mother utterly alone with a child she can’t save. Or even seem to help. In a letter that rambled on incoherently by all accounts, Jordan made one message clear:  “He was in so much pain. I had to stop it.”

Every parent of an autistic child knows this is possible. Autism is accompanied by such a host of chronic gastrointestinal and immune system disorders that we all understand head banging is not a mysterious quirk of autistics. It’s a way to trade one pain for another. Normal measures of pain relief will tear up the stomach lining and exacerbate the problem which good doctors will both acknowledge and also admit, they have no answers for.

We know Jordan had been trying “experimental” therapies which sound a little fishy and new-agey, but as every parent of an autistic child will also tell you:  the only therapies we have now are experimental.  This explosion of autism began in the late eighties meaning most of the people diagnosed at this point are under the age of twenty-one.  There are no double-blind studies for them.  There’s anecdotal evidence and a lot of parents trying everything they can, feeling their way in the dark-diets, supplements, alternative therapies.

Jordan seems to have had an almost Sunny Von Bulow amount of money and just as little happiness or peace to go along with her fourteen properties around the world.  Clearly she had something akin to a psychotic break along the way, reporting her son as the victim of a satanic cult’s sexual abuse two years ago with no evidence, physical or otherwise.  The whole thing is a terrible cautionary tale, a reminder to all of us who’ve gotten through the darkest days of those early years with our children, who’ve made it to our child’s fifth birthday, then sixth then seventh and lain awake all night counting the milestones still unmet.  We all know that Jude’s age-eight-marks an emotional turning point for parents of autistic children. It’s the age (more or less) when the brain’s miraculous plasticity hardens.  A non-verbal child of eight will, in all likelihood remain so.  Eight is when you start modifying the future and setting more incremental, realistic goals.  Tying his shoes. Reading. Some measure of independence. Those things are possible. Cures are not. Eight is the time you stop putting your energy into fighting the autism that stole your child and start learning to enjoy the child autism has left you with.

It’s a trick, of course.  A learned skill like every skill you’ve drilled into your child.  But it’s there, for all of us. As the parent of a thirteen year old, decidedly unrecovered, I can say yes, having an autistic child means too often structuring vacations and outings around him. But I can also say oh, the surprising places we’ve gone!  The train museums and plane shows and exhibits of old radios just because the squeal of delight on my son’s face is worth the price of admission and a two-hour drive.

Recently I sat front row center for a touring show of Hairspray because, among Ethan’s countless mysterious passions, this show is one.  He saw an ad, fixated on it, and his generous grandmother bought us tickets. With any other child, I wouldn’t have let someone spend forty dollars a ticket to see a show which we already own on DVD.  What’s the point, right?  Then, after spending the first half worried that Ethan’s happy flapping and rocking was bothering other audience members, I turned around and saw the surprising number of his friends with disabilities, along with their sheepishly smiling parents, all of us here against all logic. Then it occurred to me. Maybe it wasn’t such a mystery: Hairspray is a celebration of every outsider struggling to find their place in the world.  With a fat girl front and center singing and dancing her heart out on behalf of marginalized groups (and they’re all there-blacks, SPED students, her thinly-veiled gay parents…) reminding us to be brave and do the same.  When the curtain call came and the star called out to the enormous audience “Come on Amherst, dance with us!” I fear our mostly sweater-vested, bespectacled crowd didn’t quite know what to do.  We sat awkwardly as academics always will. Then—in one of those magical moments that only happen in live theater—we all watched, stunned, as our grown children jumped up and one by one started to dance.  All of them did it, flapping ecstatically up and down the aisle.  One girl with Down Syndrome found a spot to do somersaults.  Another boy tried to take off his shirt.

Afterward, while Ethan crawled over the floor to stuff his pockets with bits of confetti left over from the final number, I laughed with the other parents over our children’s euphoria, and I thought: Here is the reward for the lonely years.  Here we all are, at a show where we can learn something about joy from our kids.

This might be what Gigi Jordan never found and what parents of newly diagnosed children should remember. Number One:  Don’t go it alone.  Find other parents and share your journey as openly and honestly as possible. Number Two:  Wherever your child ends up on the spectrum from low to high functioning, there will be happy moments. Obsessions to join them on, some interesting, some less so.  But most important, there is joy to be had, good times ahead, and a zillion bits of confetti to sweep up with your hands and stuff in your pockets so you can remember it later, when you don’t have the words to describe it exactly.

Photo from The Daily News

The move to brand “retard” as derogatory and shelve the word for good has gotten a real shot in the arm from recent usage. Rahm Emanuel, chief of staff to President Obama, recently used the word during a White House meeting on health-care legislation, and was forced to apologize. A consultant to Texas Gov. Rick Perry then used the word during a conference call. Then Rush Limbaugh said something “retarded.”

Special-needs people from special-needs activist groups to Sarah Palin fired back; several states have also banned or are about to vote on banning “mentally retarded” (not to mention, in some states, “idiot,” “lunatic” and “mentally deficient”) from the state’s law wording.

Extracting “retarded” from society will produce a lot more job security than most special-needs working people have today. Consider that most of my autistic son’s services come from a New York organization called AHRC. Camping, recreation, reimbursement, fighting with Albany to prevent budget cuts: Whatever Alex needs, AHRC gets it done. AHRC stands for “Association for the Help of Retarded Children,” and when it was named half a century ago by parents desperate to find services for their kids, it was a name both accurate and accepted.

 ”Retard” had 500 years of meaning “slowing down” before acquiring its current spin in English a little more than a century ago, in a book on “mentally-deficient children.” Googling “retard” turned up more than 19.1 million hits, including a band with the name (which somehow popped up first among the 19 million), retardedhumor.com, “retarded animal babies,” and “movie criticism for the retarded” (which on Google scores right ahead of “Declaration on the Rights of Mentally Retarded Persons”).

No one’s every called Alex’s “retard” to my face, except a homeless man on the subway, and he was sort of calling everyone on the train “retard,” and I think he had problems a lot worse than Alex, though as often happens when I see such a person, I wonder if once he was a “retarded” child just living with his parents.

In my most recent office, however, I heard “retard” three times in six months. Each time, the word, sometimes with the “-ed,” sometimes not, flew with complete freedom right out of a cubicle, clear and loud. I can imagine many words that would cause quite a stir, and a lawsuit, if they flew right out of cubicles. As the dad of an autistic son, I often wish the mechanism existed for such lawsuits; I wish I didn’t have to just sit there and think about how in the future people will probably be more sensitive to the feelings of others and sensitive to potential lawyers’ fees.

Excuse me: People in the special needs field keep reminding me to say “a son with autism” and not “autistic son.” I never call him “challenged” or “special,” though they tell me I could. So how long before “autism,” “challenged,” and even “special” start getting used in conversation the way “retard” now is?

If only it were a matter of just a word. A co-worker once came up to me mid-afternoon of a workday. “Do you ever go to the park over by the river to eat your lunch?” he asked. I said no. “The guys from the special school go there,” he said. “They sit on the benches and drool!”

What I could have said back to him:

1) A reiteration of what he already knew but hadn’t thought about before he spoke: his understanding of the dignity of all of us and a recognition of need, if we chose to call ourselves compassionate, to give a chance to those in our world who are most fragile.

2) Something a lot fouler than “retard.” Maybe “co-worker with assholism”?

I should have just flashed him my button that says, “Erase the ‘R’ Word!” I wear it everywhere. I bought it from AHRC.

Photo by rlv.zcache.com