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

]]> http://thefastertimes.com/specialneeds/2010/02/26/thoughts-on-an-autistic-child%e2%80%99s-murder/feed/ http://thefastertimes.com/specialneeds/2010/02/25/its-time-to-erase-the-r-word/ http://thefastertimes.com/specialneeds/2010/02/25/its-time-to-erase-the-r-word/#comments Thu, 25 Feb 2010 21:11:12 +0000 Jeff Stimpson http://thefastertimes.com/specialneeds/?p=129

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

As a social butterfly type who obviously didn’t think through the 95% isolation aspect of writing when I chose my career as a writer of novels, book group visitations are a fabulous development. For some of us, in fact, they’re as rewarding as a paycheck:  a group of friendly, literate strangers, gathered around a coffee table groaning with food, a glass of wine in every hand, everyone assembled to talk about—how else to put this?—me!

In theory, the ideal book group is sixteen women who loved the book and bought extra copies to get signed and pass on as Christmas presents, but I admit I even enjoy the opposite: four retired English teachers who’ve all shared a library copy and have one or two problems with some of the plot points. Invariably, I can’t help but admire the care with which they’re read the book and the attention they pay to sections so obscure I’ve totally forgotten ever writing them.

Not long ago, though, I sat in on a book club that met at a local Barnes & Noble, which meant no food, no wine, a slightly larger than usual crowd—maybe twenty-five women who only seemed to know each other from these monthly meetings. The surprise came about twenty minutes into the discussion of my book, Eye Contact, and its central relationship between a mother and her 9-year-old autistic son. One woman praised the depiction of the hardships that attend raising an autistic child and the woman beside her said, “Well, as a mother of a 23-year-old with autism, I have to say, it only gets harder.”

Everyone spun around in their chair.  Apparently no one had heard this before.

As she spoke about the painful particularities of adult children with autism (the driver’s license nightmare, the ghastly sex/girlfriend question) another woman raised a tentative hand. “As a grandmother of a boy with autism…” she began.

Again, there was a moment of silence.  No one, apparently, had heard this before, either. Both women spoke eloquently about their experiences—in many ways different than my own, in many ways, the same, and then came the clincher—a younger woman, introduced earlier as the dear wife of one of the group leaders’ favorite former students said, “Well, I might as well tell you all, my 2-year-old was just diagnosed, so reading this book was a little emotional for me.”  I wanted to reach over and put my arms around her and then I wanted to stand up explain her bravery to everyone there.

When you are a parent with a newly diagnosed child, one of the single hardest things—after researching and learning everything you can about your child’s diagnosis, after nights spent reading every dire prediction written for his future—is figuring out how to talk to other people about it. Even if your instinct is toward honesty (and unfortunately mine never was early on) there’s the child to consider, the possibility that he might not always be autistic.

There are no easy answers to the question of when and how much to tell people; I only know that for years I did a terrible job of talking about our struggles. I minimized his deficits with everyone it was possible to minimize them with, including his grandparents and the early intervention therapists who were there to help correct the problems. I told them he was using fifty words when the truth was probably closer to fifteen. If he behaved within vaguely normal toddler standards for the length of a visit with a neighborhood friend, I celebrated for a day, that “we had passed.”

Maybe this is a natural impulse. If you can get away with pretending, even for an hour, that you have no problems, most people don’t mind doing so. I could also tell you the elaborate argument I told myself: at the time, I believed labels were a terrible burden, that they would limit the expectation future teachers should have for him; they would see him as one thing and nothing else.

After seven years of dancing around this issue in my mind, I now see I was completely wrong. With the epidemic of autism affecting well over 1.5 million families in this country alone, sooner or later everyone will know a family or child who has been touched by this issue. The more we talk about it, the better.  Rather than worry about old connotations of the label, better to use the word and point to your child and say to the world, to everyone you know: yes, this is autism. It takes many shapes, here is one of them.

To my (admittedly biased, overly self-critical) viewpoint, the best parents I see now are the ones doing exactly what it took me years to do without a trembling voice and tears in my eyes: They are speaking as honestly as possible, as early as possible about what their child can and can’t do. They are recognizing that this isn’t a judgment or a life-sentence or a condemnation. It is a challenge to be met with hard work, and professional help.

I take my hat off to the women who spoke up at that book club and reminded me of a quite a few things about the subject I was ostensibly there to instruct them on. This gets easier over time, but is never simple. A while ago at a music camp for my son with autism, one mother talked about reading Memory Keeper’s Daughter with her book club (a group where she was only parent of a special needs child) and finding herself tongue-tied and unsure how to talk about her own experience in connection with the book.  I have heard this same thing a few times about this very same book. When called upon to describe our experience, even with the most well-meaning friends, it’s often almost impossible to know where to begin. One wants to get across a few key points:  It doesn’t continuously feel like a tragedy; there are many joys in raising these children; he’s loving and wonderful and growing in his own ways. But you also don’t want to gloss over the reality:  there are many many hard aspects, too. We don’t share the same complaints you have; sometimes we’d give anything to gripe about soccer practices or the shuttling our children from one play date to another. Our lives are different; our pleasures more home-based and probably quieter.

But when a friend asks, sincerely, “How’s Ethan doing these days?”  I try to think of a recent anecdote that is a triumph for him. He participated in beginning band; he sang a solo of “Thunder Road,” his back to the audience the entire time. Something that conveys both the joy of his accomplishments and the limitations he’ll struggle with all his life. I try to be honest which I wasn’t for many years, and now understand how much better this feels.

Photo by Stuart Conway

Generally, we begin with the six-year-old’s pronouncement, said nightly like grace, that he is allergic to all food except noodles. Following this, the ten-year-old begins the elaborate process of separating any food that has touched another, and eventually we segue into moment when the thirteen-year-old lays his cheek on the table and says he’s too tired for all this all over again. Truly, I’ve wondered sometimes if maybe not eating together would bring us closer or at least spare us the nightly speech from their father: “Mom has cooked us a lovely dinner. I’d like everyone to thank Mom for the food.”

For years, I couldn’t say why I bothered except for two ridiculously vague reasons: 1) Temple Grandin once wrote that her earliest memory of acquiring language came from her mother’s insistence that she eat dinner every night with her family and answer two questions about her day. (In the grand scheme of autism therapies, this one is certainly cheaper than most.)  2)  I was raised this way. I’m a life-long food lover whose Junior High School days rose and fell with a promising-sounding menu for dinner.

Now we have an intriguing therapy on the horizon called RDI (Relationship Development Intervention) that is getting talked about enough—especially in its effectiveness for older children—that it seems folly to ignore. Right off the bat, I have to say that I am a rank newcomer to these ideas (I’ve attended one workshop, watched one video and read two books) but everything about it seems appealing to someone who wants to incorporate a real family into the therapies that will help the back-and-forth interactions with its autistic member. Rank beginners that we are, I also have to say, what little we’ve tried has produced some interesting revelations.

Revelation #1: Children with autism should do chores. The embarrassing secret for most of us, perhaps, but certainly for this family with a child who is bad at virtually every practical task is that we do far too much for him. Without thinking about the long term considerations, or how namby-pamby we must look, we fetch Ethan forks and glasses of water; we tie his shoes and button his shirts.  RDI message: Stop. Take the time to stop and teach him. Model the teaching. Do it interactively. The example that gets used over and over: teach him how to set the table.

Another embarrassing admission: it’s never occurred to me to ask my oldest child to set the table. Enough of a challenge, we’ve always assumed, to get him to wash his hands and come. We drill him nightly on math facts and spelling, but throw a household chore in there, as well? It’s always seemed, well, a little over the top.

I’m just beginning to realize the truth:  soon it won’t be over the top. Soon enough, these household chores, basic skills like loading a dishwasher and working a microwave will matter far, far more than a spelling or math facts and we will probably slap our heads and wonder why we didn’t start this teaching sooner, with its basic message: You want some soup, here’s the can opener. You want some juice, look in the fridge. The point being the powerful underlying message lost on so many children with autism: yes you can do this. You can take care of certain things yourself and what’s more, you can help the family.

I can’t speak for other families, but I suspect autistic children are probably asked to do far too little around their houses because they live with families who long ago grew accustomed to coddling their sometimes volatile and fragile natures. We have learned, over the years, not to rock boats or create what might be an unnecessary demand. We’ve forgotten that our children want to feel successful, that easy tasks well rewarded will feel good to them, and will awaken them to the idea of trying more on their own. I will say this: the same week Ethan started setting the table, he came down wearing a madras shirt, misbuttoned, that no one had ever seen before. In fact, no one has ever seen him in anything other than a t-shirt. He was grinning ear to ear. “I buttoned it myself,” he said, and nodded as if this shouldn’t be a big surprise to anyone.

Revelation #2: Talk about yourself. With a child who is a reticent talker, everyone has the same first impulse—ask a dozen questions and hope one or two produce an answer. For years, I have peppered Ethan with questions when he gets home from school: simple questions, yes-and-no questions, questions I already know the answer to. Usually I get what I also hear from his brothers, to be honest—monosyllables, grunts, lots of silence.

The novelty RDI approach is to keep all questions to the barest minimum, to talk as little as possible and try this: share some tiny snippet from your own day. To my enormous surprise, this actually works. Tell Ethan what I had for lunch that day and I won’t always get his menu, but I will, much more often, get a question about where I ate or who I was with. This has us experimenting around the dinner table: recently, his father and I started telling memories of our own childhood days.

What the heck, we decided, if no one can come up with anything to say besides complaints about the food, my husband and I can come up with or two reasonably funny playground stories of our own sorry kickball days, or the time on the jungle gym when my underwear fell off.  The night we told these stories, our dinner lasted an unprecedented half hour (twenty-seven minutes longer than usual) and culminated in everyone (including Ethan!) thinking of funny playground stories to tell.

In the beginning stages of incorporating a therapy that puts as one of its primary missions improving family relations, it’s interesting that so much of it should be done around the dinner table. For so long we’ve been sitting here, ready and waiting, apparently not sure what to say.

Cammie’s essays on family/life can be found here at The Faster Times and on her web site.

Photo from Squidoo

]]> http://thefastertimes.com/specialneeds/2009/11/13/family-dinner-was-impossible-now-its-pleasant-thank-you-rdi-therapy/feed/ http://thefastertimes.com/specialneeds/2009/11/10/94/ http://thefastertimes.com/specialneeds/2009/11/10/94/#comments Tue, 10 Nov 2009 14:59:05 +0000 Jennifer Rosner http://thefastertimes.com/specialneeds/?p=94

Like many parents of special needs children, I often worry about my child’s self- esteem more than anything else. My eight-year-old daughter, Sophia, is hearing impaired and while I certainly don’t want her to miss the actual “content” of her world—the math instruction at school or a friend’s banter at a slumber party—my paramount concern is that she does not feel excluded or isolated by virtue of missing that content.  

Research wonk that I am, I frequently search the web for studies on the development of self-esteem and self-worth. Recently I located a study that examined the impact of disability on children’s self-concept.

This study, by Christine Johnston and Kenneth E. Sinclair at the University of Sydney, analyzed data from children with learning, physical and intellectual disabilities. It confirmed a host of earlier studies showing that, while children with disabilities score lower (as compared to non-disabled control groups) on measures of self directly affected by their disability, they showed no difference with respect to global or general self-worth. This sounded right: Sophia, I presumed, might rate herself lower on skills and measures related to hearing, but not overall.

Sophia attends a mainstream school in which she is the only deaf child in her class. Her hearing aids are a visible marker of her difference.  She doesn’t seek to hide them (not yet, anyway): she wears her hair in a high ponytail, and instead of choosing camouflage beige, she has chosen hearing aids with a “clear” casing to show the inner workings of the technology, and glittery gold earmolds. 

Sophia’s diagnosis of hearing loss came shortly after birth and she has worn hearing aids since she was three months old. For her, all of the technology and the hearing checks, the appointments and the accommodations, are “routine.”  She is adept at explaining her hearing loss to strangers, and she is able to advocate for herself at school and with her friends. So I was surprised the other night, as she danced around and around our living room, to hear her say,

“Daddy, do you think I’ll dance like this at my wedding?”

“Yes, Sophia, I do.”

“But”—she stammered—”do you think any one will love me—I mean—with my hearing aids?”

I know that all kids question whether they are lovable.  But Sophia’s questions were linked directly to her deafness. When I tucked her into bed that night, I said,  “You know, Sophia, there are people in this world who make up reasons not to love others—because of the color of their skin, or their religion, or some other difference between them—but those people are not focused on what matters. If a person doesn’t love you because you have a hearing loss, then that person is not worthy of your love. You are a wonderful person with a full heart. People who know what matters in this life will come to know you and love you for who you are.” 

As I was saying all this, I wondered: is this really where I should be heading, into a discussion about social justice and prejudice? Shouldn’t I just hug my girl and ask, with the disbelief I truly felt: “YOU?!—who can read any face, who can quiet any baby, who can cause any dog, however hyper, to settle calmly, magically, at your feet? YOU?!—whose eyes are rivaled only by Lake Tahoe’s Emerald Bay?  Someone not love YOU? Daddy and I are already buying bolts for the door to keep the hordes away.” 

But I didn’t change my course.  Sophia was telling us that she knew:  she knew she had a difference. And she was asking us: would she be OK?

If summer is a time for family reunions and visiting old friends, when you’re the parent of a child with autism, it’s also a time for taking stock and hoping to hear accolades from people who haven’t seen your child for a while:  I can’t believe how well he’s doing/how much he’s talking/how great he seems. Sadly, this summer, we haven’t heard too much of this.

All children with autism go through ups and downs.  There are phases of mysterious and surprising leaps, where you look at every supplement, every therapy and food he’s eaten to explain some new, remarkable clarity.  Then there are the phases like the one our 12-year-old, Ethan, seems to have been in most of the summer:  not dreadful, just a lot of mindless humming, lots of silence, lots of staring out windows watching other children play in our backyard.

It’s a mystery why Ethan disappears this way when three months ago he was telling stories six and seven sentences long, asking thrilling and uncharacteristic questions about God and what happens to people after they die (all of this a huge abstract leap for Ethan.) These days, there’s none of that.  Instead, there’s endless repetition of meaningless phrases and sobbing at minute disappointments.  To even the most sympathetic outsider he can look spoiled and bratty because this is what happens as you shepherd your autistic toddler through the years:  he becomes an 12-year-old who acts, on some days, like a three-year-old.

I once wrote a piece in the New York Times about the epidemic of autism  producing its own cottage industry of well-meaning professionals, peddling all manner of therapies to the scores of desperate parents willing to spend any amount and try anything on the chance of “recovering” the child they’ve “lost” to autism.  Having gone that route ourselves, we’ve slowly come to the realization that “recovery” is a loaded word and too often demands rejecting much of what your child innately is.  For us, it’s been just as hard and ultimately, I believe, more important, to accept the autism and celebrate the small strides rather than getting overly focused on elusive cures.  The day after the piece ran, I received 107 e-mails at my website thanking me and praising my parental wisdom.

I still believe what I wrote, but a year later, I have to admit that it’s hard sometimes to stand by it.  I want to accept my child as he is, but I also want to ask for a little break from the autism gods — couldn’t I accept my child as he was three months ago instead of now?  Could we lose the new tic where he grunts every three minutes like something has just dropped on his toe, though we’ve learned after many false starts, nothing has?  Must I accept this disinterest he has in everyone these days except for the girls wearing tank tops that he’s developed a mysterious compulsion to look down?  Could we throw away one or two of the more annoying compulsions like the one he’s developed to call me dee-mommy?  (Harmless I know, but there you have it; hear yourself called this nine hundred times a day and see if you don’t start making a few rules around it.)

I thought of all this last week as we were leaving the beloved lake where my husband’s extended family has vacationed for the last 40 years.  This year had marked the surprise return of my husband’s beloved Aunt Nancy, whose constellation of health conditions (diabetes, lupus, osteoporosis, heart condition, on and on) escalated so severely last fall, that she lay in a hospital, comatose, with her family gathered around her to say goodbye.  That she is even alive nine months later is a testimony to the extraordinary care her husband and family have taken of her.  That she is up at the lake, smiling and cheerful, perched on a nest of pillows to support her crumbling spine, is a miracle. The first time we saw her this summer, she looked changed by the year she’d just spent in hospitals and rehab centers. She was thinner, more fragile, her hair finally given over to gray, but she seemed, there is no other word for it, remarkably alive.  The first thing she said to me was that she was sorry she’d missed my reading last fall. I shook my head in disbelief.  Though I couldn’t remember the exact dates, I’m almost sure she was in a coma at the time.

I want my children to recognize what Aunt Nancy represents.  I want to sit with her and not forget it either.  We will all one day do battle with our own health, and hers has been an extraordinarily graceful one that seems to have allowed some capacity to still think about other people and still take pleasure in small things.  She talks about some delicious peaches they just ate, and the banana muffins I brought.  Mostly she seems happy to be at her cabin, seeing her family, looking out over the lovely lake we all share.

As we’re leaving, we stop by Aunt Nancy’s one last time, and I tell the kids it’s fine to wait in the car — I hate to surprise or inundate her with boys who want to drive cars over her sofa — but Ethan pops up from the backseat, and announces he’d like to say goodbye.  I know him well enough not to make too much of this.  He’s very good at the predictable exchanges with people, excellent with hellos and introductions, a champ with hugging people goodbye.  I also know that, in truth, he loves Aunt Nancy in part for the contraptions that surround her these days, the whirring oxygen tank with the tube that snakes up her nose, the elaborate walker with what looks like handbrakes, the apothecary of pills on her bedside table.  All fascinating for him, all a delight.  Every time he’s seen her, he’s asked if she would make a sound like her oxygen tank.  “Psst–” she says, smiling.  “Psst.”

And he laughs.

Is it funny?  Not really.  But this last visit stays with me not for what is said, but for everything that isn’t.  Ethan sits beside her, grinning from ear to ear, whispering questions about her nose tube and the dials on the tank.  Honestly, do the words matter?  They are two people who are loved and still have battled mightily against the bad hand of cards fate has dealt them.

Watching him take in Aunt Nancy, giggle with her, touch her oxygen tube, lay a finger across his own upper lip in what I know is a desire for a nose tube of his own, I think: remember this. There are pleasures along the way.  There are delicious peaches, and the blessing of family, and the view of a lake she must have thought she’d never see again.  There are moments like this, between a sick woman and a little boy who has disappeared for awhile, a boy who has spent two months in relative silence, but still has the good heart and good sense to get out of the car and say his goodbyes to his dear Aunt Nancy.

Photo by SeRVe61

]]> http://thefastertimes.com/specialneeds/2009/07/20/summertime-and-aunt-nancy/feed/ http://thefastertimes.com/specialneeds/2009/06/25/hello-jenny-mccarthy-please-dont-use-the-word-cured-the/ http://thefastertimes.com/specialneeds/2009/06/25/hello-jenny-mccarthy-please-dont-use-the-word-cured-the/#comments Thu, 25 Jun 2009 18:50:09 +0000 Cammie McGovern http://thefastertimes.com/specialneeds/?p=18

Pity poor Jenny McCarthy. All she did was cure her son’s autism by changing his diet, and then — overwhelmed by gratitude — promised God she’d testify to this miracle on every talk show she could get on and then she landed at the bottom of an Internet pile-up of raging parents whose anger seems to have taken her by surprise. ”I mean, I don’t know,” she says. ”I’m just trying to help, giving people hope.”

Quoting her verbatim is one of the problems.

Okay, she does have some decent points on her side. She and her boyfriend, Jim Carrey, argue that researching the link between autism and vaccines is imperative and should be fully funded and they’re absolutely right. Government’s fear that a rumored link between the epidemic rise in autism and the increase in the childhood vaccination schedule will keep droves of new parents from inoculating their babies won’t go away with less information, no research and a handful of judges dismissing the link.

The problem isn’t the argument she’s making so much as the degree to which she carries it. She sometimes sounds — well, I don’t know, maybe not so bright, and she’s taken on a thorny issue where words need to be chosen carefully. “I just cleared up his funguses and changed his diet and now — this is important for everyone to know — he’s totally cured.”

She’s been outlining her protocol so everyone can jot it down and start in right away:  wheat and dairy-free diet, anti-fungal treatments and voila!  Autism recovery.  Some of this might come as news to the general public, but hardly so to any parent of an autistic child where the diet is celebrating its second decade as a treatment for children with gastrointestinal issues and developmental delays.  Anti-yeast protocols are also as old as the hills and she’s right about both — they help a lot of kids.

They’re effective treatments in addressing a complicated constellation of problems that besiege these children. No one begrudges her enthusiastic support of the alternative therapies we’ve all turned to. It’s the word choice she’s using.  He’s totally recovered.  I cured my son.

One has to give Jenny the benefit of the doubt and assume she doesn’t realize the powder keg she’s ignited in the army of parents who’ve fought the battle for years, believing/hoping/praying early on it might be this simple. Every parent I know remembers an optimistic period of great gains, of privately thinking, could this be behind us? But all these parents also know the thrill of improvement is part of the frustration — if a food allergy was the problem, why isn’t diet the whole solution? Why is he better, but not yet cured?

Doing battle with autism has taught every parent different lessons but, from my experience, one universal one is letting go of overly simplistic terms. Until Jenny came along, I’ve literally never heard any mother say, “I’ve cured my child.”  Even the mothers of children who’ve grown into extremely high-functioning teenagers, shake their heads and admit, the problems are different, but still loom large and are just as worrying: anxiety, depression, non-existent social lives.

What most of us have learned by watching our children is that autism and the mysterious orchestra of tics, compulsions, and obsessions it brings along, moves into a body and doesn’t leave easily.  Slowly, we’ve made our begrudging peace. Autism isn’t always the enemy because, look, here it is, so much a part of this child I love. Our son, Ethan, 12 now, is better, certainly, and better means a great deal to anyone who has spent years as we have, teaching language with flashcards, every rudimentary basic of  play and interaction. Better is a blessing that should never be discounted. But cured? No.

My initial response to Jenny’s circuit of TV guest spots isn’t anger so much as sadness for the scores of parents she’s preaching an over-simplified “hope” for and the complicated re-adjustment they’ll have to make down the line when their child improves but never seems totally cured. But I also wonder — and I admit this is speculative and probably unfair — about her son. Most of the enraged parents are saying if he’s cured now he must have been misdiagnosed initially. I don’t know about this. My instinct says that autism is a label one so desperately dreads that she would never have gone public with what might have been a misdiagnosis. Maybe she and her son are among the lucky few that will walk away without a vestige of his autism.

But wait: she has admitted he still has a pinch of auditory processing delays. ”Sometimes people talk a little fast and he has to say Slow down!  Sometimes the world can get a little loud for him.”

Okay. So maybe he’s not 100% “cured.”

She also admits he still gets a “little speech therapy” to smooth out the rough spots. But here’s the important point, she says, leaning across the desk to Larry King who’s having his own trouble making eye contact, given the low-cut dress she’s wearing on his show:  “He’s not autistic.”

Now I start to wonder if she’s just playing the re-naming game.  Lots of us have done this:  Shuffled labels and picked the vaguest ones possible so we can call our children anything other than autistic (OCD, PDD-NOS-all of these have very distinct meanings, but I sometimes think we parents take comfort picking and choosing.) Looking back, I also know from experience this doesn’t really work.

No one wants their child labeled autistic, but once you make your peace with it, enough to admire some of its components, you see that autism gives its sufferers a whole fascinating dance of pleasures and comforts. Why is hand flapping and pacing such a happy thrill? Why squeal and bounce and cycle through lines from your favorite movies? None of us who aren’t autistic will know, but I will also say this: it’s a marvel to watch and it’s especially hilarious at night when your spouse comes back to the TV, a dish of ice cream in his hand, and does a little imitation. It’s a daily concert we have playing in the background of our lives and mostly it’s a happy one (odd but true — most of the autistic kids I know are pretty happy kids.) I don’t think I’m quite on board with the “don’t cure us” crowd. If I could cure my son, I certainly would. We’re still trying, still dragging ourselves to doctors and therapists, but certainly not at the expense of his happiness or peace of mind. I hardly ever say ”Quiet hands,” any more unless he’s driving me absolutely crazy, by which point I usually say, “For God’s sake sit down and be quiet, Eth.”

But what if all his oddities were taken away? What if it became very important that he never look odd (or autistic) again because, say, his mother had been on TV announcing, “All that is behind us.” What if he could never squeal with happiness or let his hands flap with joy again? For Jenny McCarthy’s son, maybe it really is all behind him or maybe she’s given him one more battle to add to the fight, without his private comforts to help.

I don’t know, but I’m just thinking it might be a little bit sad.

Photo by planetc1

Back in April, National Autism Awareness month, I couldn’t help noticing in the wall-to-wall coverage (truly, did anyone make it through the month without watching Sanjay Gupta wrinkle his brow and talk about the new 1 in 150 children diagnosed figure at least once? My guess is no) was the nearly universal focus on children under the age of 8. It’s as if autism fades away (it doesn’t, trust me) and there is no adult population to be dealt with.

There is. Again, trust me.

In fact, the numbers are fairly staggering: by 2023, the number of autistic children who will need extensive living support as adults is estimated to be 380,000. This number doesn’t even include existing adults with autism that would easily double the figure.

No one would argue that autism doesn’t get its fair share of celebrity spokespersons and media coverage, so why do we seem to have a puzzling, if not downright alarming lack of coherent social service planning for adults with autism? Just to take may own state as an example: Massachusetts, where we pride ourselves (in theory) on our Kenned-family approach to serving our most vulnerable disabled constituency. I’d wager no state runs a finer Special Olympics program than Massachusetts, yet we have no department, or separate state agency dedicated to serving the autistic population or allocating funds for them.    Below the age of 22, they are served by DMR (Dept. of Mental Retardation); after 22, well — as honest legislators admit — we’re still trying to figure out what to do. The criteria for adult services through DMR are a straightforward one: you’re in if you have an IQ of 70 or less. Score this and you win residential services, work assistance programs, day transportation, or in other words, a chance at a living situation and an independent life.

Score higher and you get: your aging parents working alone to find things for you to do.

At our recent autism conference in Western Massachusetts I sat at a table full of promotional material for Whole Children, the after-school recreation center for children with special needs that my friends and I have started, and a woman approached me with a frantic look in her eyes. Her eyes skittered over our pamphlets advertising our fabulous gymnastics and martial arts classes. Her son was 22, she told me as she pulled up a chair, and doing nothing. “You can’t imagine how sad it is,” she said.  “He’s always been a busy, happy kid and now this. He’s got nothing to do. Nowhere to go.“  She had tried to plan ahead, had a group of other parents working on a community, organic farm setting that fell through. She’d been planning ahead for five years but that just wasn’t enough, she said, shaking her head. “I should have started sooner and had more back-ups.”

My heart broke as I looked at our brightly colored brochures. Whole Children has gotten a smidgen of state support because we represent a nice grassroots idea that progressive-thinking lawmakers are hoping others will follow: incorporating therapy and skill-building into recreational classes. Bring families together in affordable programs. It has worked beautifully, but what does any of this accomplish if the fifty years our children will spend as adults looks like a wasteland?  Every lawmaker I’ve spoken with acknowledges this “hole in the system” that needs to get addressed at some point.

As Linda Davis pointed out April 4 in her wonderful Washington Post piece, if all the autistic population and their caregivers were gathered together, they’d populate a city the size of Minneapolis. (Isn’t it also a funny image-everyone rocking slightly, reciting lines from movies, counting change in their beloved peripheral vision.)  The point being, though: There isn’t a city where everyone could live and perseverate in peace forever. In fact, there’s nowhere for these people to live at all. At home with parents might solve the question of food and board (temporarily) but what of the far larger and more urgent issue: that of having a life? The very aspect of autism that disqualifies them from services (higher IQs) is wasted without assistance and work programs.

“No one’s sure what to do with this population,” I’ve heard a DMR representative admit. “They turn 22 and it’s like they’re stepping off this cliff and slipping into a crack.”

Kudos to this man for admitting the problem everyone seems to acknowledge without knowing what to do about. “It’s a head scratcher,” one legislator told a group of parents posing the question of when funding — or programs, or services, or even an official office might be nice — would be available to serve adults with autism in our state. “The answer is no one knows.” He seemed genuinely sad to admit this.

Pretty soon, I’d wager someone’s got to start pointing out the larger problem: if almost half a million people are slipping through it, it’s time to take a closer look at that crack, or even admit, that’s not really a crack anymore, it’s more like a crisis.

Photo by katiescrapbooklady