Frontline review: a matter of tone

I finally watched the Frontline "Vaccine War" piece, and as some of you may have noticed, I've already done a couple of related posts that have attracted some attention. One ardent follower of Dr. Gordon advised me via Twitter that I am "just trying to get attention in a noisy way,because you think we all live in your noisy world...get a life!" Why, I do have a life. And it's...less ordinary. Ba-dum! I'm here all night, folks! I'm told that I've just experienced my first drive-by tweet.

Anyway, back to Frontline. One thing I went into my viewing with was a clear awareness of my biases. I knew that I would not be able to watch and listen to Jenny McCarthy simultaneously, and as she was speaking, I couldn't keep from tweeting that she seems to have gotten her degree from Google Elementary, rather than Google U. I've read some of Ms. McCarthy's words, but hadn't previously had the pleasure of hearing them spoken complete with tone, gesture, and facial expression. Of that last, I only caught a few glimpses.

Tone matters, doesn't it? As any actor knows, the same words can be said in a million different ways with a million little subtle changes that convey a nuance of frustration, a frisson of lost patience, a soupcon of underlying indifference. And while not one single interview on the Frontline episode really surprised me, what really rang out for me were the tones of the different voices.

Jenny McCarthy was pugnacious, defensive, snarky. In terms of offering evidence, she did what I've heard of her doing before: Her evidence for anything she has to say is her son. As I've already blogged, I found Jennifer Margulis' tone to be unexpectedly dismissive and jocular about something so serious as the death of children from vaccine-preventable diseases. J.B. Handley also was pugnacious and defensive, with a blustery, windy tone that I found off-putting. Dr. Cynthia Cristofani, who led the EMS courses on how to recognized distressed infants, came across in tones of deep compassion, driven by her experience and heartfelt concern. Art Caplan, whom I've often read but never heard speak, spoke in tones of honesty and urgency that drew from me respect. I liked him a lot. Dr. Anthony Fauci's voice also resonated with a quiet, measured sincerity.

It's probably a personal aesthetic or something, or maybe a perception of wanting a salve to soothe my own reflected failings (pugnacious and snarky much?), but I harkened so much more to the compassionate, quiet, sincere, and thoughtful voices of that Frontline presentation. They captured my ear and made me listen. When the tone was angry or dismissive or blustery, they lost me. I was more beholden to these sounds than I was to what they were saying, in part because I've heard it all before. Perhaps for me (maybe for others), whom we hear, whom we listen to, is just as much a matter of aesthetics as it is a matter of what we know and understand or want to hear.

You'll notice that I have yet to mention Dr. Offit. I watched his interview. His tone aside, one thing that stood out for me was the fact that he did not answer the question about whether or not he'd made money off of the rotavirus vaccine. The answer is obvious, of course. He did. Why not just say, "Yes," and then move on to his valid point that the vaccine has saved untold numbers of lives and huge costs associated with rotavirus-related health care? His tone wasn't so important there as was the absence of an answer.

I most enjoyed the way Frontline unfolded the scientific story behind this controversy, dating it from Wakefield's retracted MMR study and carrying it through to the multiple epidemiological studies showing no link of any kind between autism and vaccines. Speaking of Wakefield, I'd never heard his voice before, and his tone and presentation were what I'd envisioned: rather slickly martyr-like, a voice that immediately engendered a profound distrust in what I heard him say. How's that for scientific? Speaking of which, I appreciated the quiet tone of the Danish scientist and even the pleasant voiceovers from the Frontline folk.

So, ultimately, the Frontline viewing--and listening--wasn't educational for me in terms of its content. God knows, if you've wandered around enough out here in the Webosphere, imbibing what this side has to say, what that side has to say, you could have scripted out those Frontline interviews with a fair amount of accuracy. But could you have gotten the tone? What I did take away from it was a tiny bit of insight into myself: I like quiet, measured, thoughtful, sincere, compassionate tones. They soothe my ear like the music of the elves. Constantly angry, ranting people put me off, and I'm far less likely to truly listen to what they have to say. How much of our "stand" on anything has to do with these seemingly peripheral elements of aesthetics and intuition trumping all manner of hard evidence?

It's questions like that that drive Spocks like me insane.

Jennifer Margulis, public health officials' nightmare

I watched the Frontline vaccine piece. It's worth watching, although I didn't pick up much I didn't already know. I'm formulating a full review in my tired little brain. Meanwhile, I am distracted by the willful selfishness of Jennifer Margulis, the mother of four who always seems to get the summons when a news media outlet needs an anti-vaccine parent who's not Jenny McCarthy (What's in a name? Or initials? Just wondering).

How can it help the cause of a group ostensibly arguing for change on behalf of children if people speaking for them don't give a rap what happens to other people's children? What she says seems to be a carefully articulated but pretzeled logic barely masking selfish and irrational fear. It's a Me! Mine! Mommy mindset that cannot be helpful in any way to society, to children, or to public health. More than anything, it demonstrates the impossibility of arguing that not vaccinating will somehow make children healthier. There's no defensible, logical way to pull that one off. The fallback rationale, invariably, is the "I have a right to be selfish" argument.

I've actually blogged about Margulis before. Her lack of insight and compassion baffles me. Previously, she proudly described herself as a public health official's nightmare, apparently missing the point that public health officials are concerned about...public health. You know, like, other people?

But what she had to say on the Frontline episode was almost unspeakable in its offhandedness about human life. About children's lives, as long as they're not her children.

On rotavirus:

"It's a mistake that we have a vaccine against rotovirus (sic)...the vaccine that Paul Offit helped to develop. In the third world, maybe people are dying of rotovirus (sic) but in this country, you have to do backflips to show a death toll of people from rotovirus (sic)." Maybe? Those "third-world" people? That death toll runs over half a million children annually around the globe. No backflips necessary.

On polio:

"Why are we giving children so many vaccines? There’s no more polio in the United States and there’s no more diphtheria in the United States and no one, no child has contracted wild polio since 1979 in the United States. So when do we take polio off the vaccine schedule? When do we say ‘fantastic, the vaccine worked? We figured it out, we don’t have a polio epidemic any more.’ Let’s stop vaccinating against polio."

I'd say the benchmark for when to stop vaccinating for a deadly or permanently debilitating illness was set by smallpox. We stopped vaccinations for that when...it was globally eradicated. Guess what? That ain't happened yet with polio, and an outbreak in an unvaccinated population is a mere plane trip away. It still is imported from endemic countries to other areas. I guess these arguments to stop because it isn't in the U.S. any more would be sound if we could build a big ol' giant snow globe over the United States and stop all travel and imports and exports and basically shut down the entire global economy and...well, you get the idea. And it hasn't happened yet with diphtheria, either. By the way, Margulis is, among other things, a travel writer.

Finally, she says near the end, without apparent irony, "“I don’t mean to sound selfish.” Then she argues that her sole responsibility is to protect her child (or children; I think she has four). Children, it seems, who must live in the vacuum of space far from social interaction, social need, or social responsibility.

Further words fail me almost as catastrophically as logic and compassion seem to have failed J. Margulis, Ph.D., English Literature.

Jay Gordon excoriates Frontline

Dr. Jay Gordon has posted a...something...of sorts over at HuffPo in which he gives the text of a letter of righteousness he sent to Frontline after they failed to run a single second of their interview with him. I read his piece, and I read the letter. And I can't find a single thing in either that offers up a fact to counter anything that Frontline aired. Nothing. It's primarily a litany of complaints that Frontline would have the temerity to exclude him, HIM!, from their show, especially after he, HE!, took the trouble to give a two-hour interview. Most of the letter is about how great he is, how a True Eminence like himself should never be excised from something like a Frontline report. I mean, how dare they?

There's something that throws me off about his letter. I think it's the emotion, the italics, the personal attacks, the unsupported accusations of lying...these things simply do not seem to behoove a practitioner of medicine or someone who lays claim to a backdrop of support from science. Curious about the presence of this cardinal sign of a pseudoscience (look for emotion! exclamation points! a total lack of factual information!), I looked into Dr. Gordon a bit more. Pardon me for my ignorance, but I hadn't ever really heard of this guy because, well, he's just a pediatrician. There are thousands and thousands of pediatricians in this country, and I've already got one of my own.

The first thing I wondered was, I wonder if he makes any money off of his target audience? And, he does. Pseudoscience sign #2. Not surprisingly, his tomes are listed under "recommended reading" on...his Website. There are three books listed there. They're all his. Further reading leads to information about how he's parlayed his "expertise" into all kinds of consultant roles across various sorts of entertainment media. OK. But where is the information about him that explains his role as a vaccine expert? Where is the information about his training in toxicology and/or infectious diseases? Or his published studies on vaccine-related studies or preventable illness? I can't find it anywhere.

And is it any surprise that in the pantheon of experts that Frontline rounded up for this story, there are none on the anti-vaccine side who are, in fact, infectious disease specialists, toxicologists, published investigators in the field, or public health experts? Instead, we have Jenny McCarthy, PhD, Google U, Robert W. Sears, M.D., Pediatrician, no specialty, and J.B. Handley, a businessman who started an autism organization.

Perhaps that's why Frontline ultimately elected to not use his interview. Credentials for speaking to the effects of vaccine would seem to include having some training in infectious disease or toxicology. They'd seem to require some background and training at least in public health or epidemiology. Otherwise, you're just talking to another general pediatrician with opinions, in both cases pediatricians who've managed to parlay those opinions into a self-promoting cottage industry involving peddling their books. Frontline already had one of these in Dr. Sears. Perhaps they felt that Dr. Gordon would simply be redundant.

I wouldn't feel quite so snarky about Dr. Gordon had he managed to omit the following from his empty letter to Frontline:

Did you happen to notice that Vanessa, the child critically ill with pertussis, was not intubated nor on a respirator in the ER? She had nasal "prongs" delivering oxygen. I'm sorry for her parents anxiety and very happy that she was cured of pertussis. But to use anecdotal reports like this as science is irresponsible and merely served the needs of the doctor you wanted to feature.

Really? A pediatrician who has practiced as long he avers to have practiced ought to know--surely has seen--the terrible effects of whooping cough in the very young. He dismissed this visual as not convincing of the child's critical condition. In the same letter in which he himself wrote only of his anecdotal experience, without producing an iota of data, he then asserts that using "anecdotal reports like this as science is irresponsible..." Irony meters nationwide surely exploded as those words were typed. But I simply do not understand, cannot fathom, how he, as a doctor, found it in him to grasp that desperately at pediatric nasal prongs in a feeble and cowardly attempt to dismiss the deadly dangers of whooping cough, especially to the very young? How can a doctor licensed to care for children use a child's suffering as a false front for an assertion he must know is indefensible?

Age of Autism self-defiles again

I generally don't spend a lot of time thinking about Age of Autism. They're an utter failure in every way. Unable to produce anything resembling real journalism. Unable to prove their pet ideas about vaccines and autism. Unable to stop perseverating on vaccines in general. Given this litany of failure, I suppose it's no surprise that they turn to sophomoric nonsense of the kind we usually hope fades out by about age five.

Even if I thought there were a smidge of evidence supporting a autism-vaccine link, I'd still stay away from them because I firmly believe than when you touch pitch, you get defiled. And the Age of Autism people appear incapable of doing anything without being covered head to toe in pitch. Their primary modus operandus beyond vilifying anything having to do with vaccines is to express everything about their autistic children in words that are so caustic, angry, and hateful, I avoid them just to preserve my retinas.

They appear to have no depth to which they will not sink. For the holidays, they brought us the infamous picture of several of their "enemies" seated around a holiday table with an infant substituting for the turkey. That was a fine piece of work, cogent and achieving heights of satire we haven't seen since Swift. Or, I think that's what they intended. In reality, it was so stupid and gross and offensive that even AoA eventually felt compelled to remove it.

Today, they're back with a double hit of good-time ad hominem (or ad feminem) attacks. They start with Amy Wallace, who wrote that stellar and fearless piece awhile back for Wired. Seems she's earning honors and accolades for that work, and AoA Does. Not. Like. That. I'm sure it's painful for a faux "newspaper" to see people who engage in real journalism getting the kudos they deserve (another of their targets is Trine Tsouderos, who writes and writes well for the Chicago Tribune), and so it comes as no surprise that their "piece" on Amy Wallace is nothing more than an attempt to attack her journalistic bona fides. God forbid that they'd try to go after any assertions she made in that piece that might be wrong. Guess they can't because they can't find any.

But it's their tweeted efforts to attack Frontline's story on the vaccine wars that tops off their childish antics of today. In this case, their attack is more ad muppetem than ad hominem. When you start to attack the Muppets...well...just keep your nasty bitter pitch off of the Muppets, dammit. I didn't get to watch the Frontline piece, but I assume that it must have been factual and none too supportive of the anti-vaccine crowd. It if had been supportive, I cannot think what would have driven AoA to tweet the following: "PBS likes autism so much because our kids will watch Sesame Street until the day they die."

I'll let that one sit there and marinate in its own bitter juices. Brimming with pitch, too, of course.

In retrospect

Autism can sometimes be all about retrospect. What were the signs we missed...in retrospect? Is there something we could have done, at some point, that would have made something different...in retrospect? Will we look back, down the road, and think of a million things we'd've not done quite that way...in retrospect?

Um, of course. We are just as imperfect as you are, people.

This obsession with details in retrospect can sometimes, I think, cloud what we're living in right now, whether autism has anything to do with it or not. That constant alertness for Something That Might Be Missed can make molehills loom like Pike's Peak, becoming obstacles so high and rocky that somebody's gonna have to build a train track just so we can conquer them.

And it may be that I fell into that age-old trap of parental magnification when it came to that terrible costume "fashion show" that Dubya had to endure last week. If you're a regular reader, you know the one that I mean. Had him in tears in the kitchen at the very thought. Had that look on his face of abject terror. Had that tensed little body, crushed by anxiety.

Given all that, I made a big deal out of it. To myself. To people here. Not really to him. To him, I honestly was a bit of a pragmatic hardass, telling him that sometimes, we participate in stupid things because, well, sometimes life requires us to participate in stupid things. And that anything we fear that won't actually kill us requires facing. As soon as possible, as frequently as possible, until it's no longer a fear. Of course, inside, all I wanted to do was to tell him that I was absolutely going to keep him at home that day.

We got a lot of good suggestions here and from other quarters about how to handle the situation. I considered several of them, asked around a bit about implementing a couple. But in the end, I kept my worries to myself, my dithering under wraps. And the night before the fashion show, I dug out a plaid, collared shirt in perfect 1950s brown, a pair of khaki pants, a belt, and the world's smallest magnifying glass, and laid them out on the couch in the livingroom.

Somewhat to my surprise, Dubya found the costume quite fetching and immediately put the entire thing on, tucked in shirt and all, parading around the house in it until bed time, praising some of the tweaks I'd made to his magnifying glass to make it look a bit more detective like. And the next morning, instead of waking to the sounds of dread from Dubya's quarter, I found him comparatively perky (for him, this means his eyes were open) and completely attired in his Frank Hardy costume. This entire time, I'd struggled to strike exactly the right tone between "Meh, this is no biggie" and "those clothes are simply perfect for you!" I offered to send along a change of clothes if he didn't want to wear his costume all day...and he declined.

As we approached morning drop-off, we noted that many mothers (mostly mothers) were parking their cars and walking their kids in, ready for the big event. I cheerfully (for me, this means I wasn't mumbling through my coffee) asked if he wanted TH and me to watch the show. He declined. So, I did not get to witness the big event. I did reward him after school for his bravery with an impromptu visit to Starbucks for his favorite treat, a slice of marble pound cake. To the Frank Hardy impersonator go the spoils.

Although I missed the actual event, I did, however, receive a phone call two hours after it went down from a mother who was there. "He did great!" she reported. Apparently, he even possibly maybe did a little sashay and posing with the magnifying glass, and she averred that his costume was a huge hit.

And as I sat there, listening to this glowing report on the public performance of my angsting, tearful, costume-aversive son, I was deeply pleased but also feeling a little bit stupid. I mean...what was I thinking, spending all that time worrying about a little molehill like that? Including all of you folk in it, too? Getting all riled up over a few tears, a bit of anxiety? Of course, that's easy to say now...in retrospect.

Making connections

I recently had a birthday. As readers in their 30s and 40s may understand, it's not a big deal, really, to have a birthday at this advancing age, but it still feels great when someone else sort of makes a big deal about it. In this case, the someone was my brother and his family, who came to my house with some of the best burgers in town and a cake from one damned fine bakery. Other family were busy on important business--truly--and it was really kind of my brother and my sister-in-law to come spend the afternoon with us, bringing their three children to play with our three. It was festive, if modestly so, and I was glad to receive one of TH's patented "joke" cards, complete with instructions on each page to "look on the next page."

My brother and I had some discussion about Dubya and his impending "fashion show" at school, the one that had him tears at the idea of parading across a stage in a costume. His anxiety about it two weeks before the event took an almost material shape around his little 7-year-old body, enclosing him and pressing down on him, and I was torn: Do we make him do it, or do we rescue him from it? Many kind people commented here and elsewhere with ideas about what we might do for Dubya, and we considered several of these good suggestions. But that's another post.

As I talked with my brother about Dubya, mentioning that of my three children, Dubya is the one I've yet to really figure out, my brother--let's call him Brother DMFP--had some suggestions of his own. "Do you ever spend one-on-one time just with Dubya?" he asked me. And honestly, no. I don't. He's a sandwich child, stuck between a three-year-old and a homeschooled special needs brother. When could we ever have alone time together? Since his birth, practically, we'd been a family divided: TH and mama on one side, because I was the one who could "handle" him, and Dubya and his dad on the other, a tight little team of two. In later years, we haven't divvied up like that as TH has learned to manage himself, but the clear preferences for a specific parent linger.

So, I knew what Brother DMFP was getting at. And he oughta know. He's a sandwich child himself, the middle of three, stuck between a couple of sisters. We talked about how, if maybe I could spend more one-on-one time with Dubya, he might even let me show him some affection without pulling away from the slightest touch. He does that to everyone--it's not personal to me--but a closer attachment might lessen that.

After feting me appropriately, Brother and family bid us their goodbyes, but not before my brother used my computer to send me an Amazon gift certificate (we don't stand on ceremony too much in our family--I'm sure that's shocking), and--hey, Brother!--I've used it to buy a new office chair. The one I had is about five years old, beaten all to hell, zero lumbar support, and is probably in part to blame for the fact that I suddenly appear to have developed scoliosis. So, that was a very useful gift certificate. The chair arrived today, and I'm sitting in it right now, enjoying lumbar support for the first time in years. (A question: Can a paragraph in a blog post count as a thank-you note? Oh, I'm kidding).

Shortly after the departure of my brother's family, a wailing and keening and gnashing of teeth wafted from the upstairs environs. Dubya, it seems, had found that someone--probably his little brother--had gone into their room and dismantled several of Dubya's beloved Lego creations. He was devastated. He's sick of that shit, although he didn't say it that way, of course. He just sobbed.

And, mindful of what my brother had just suggested, I scooped up my sad and frustrated seven-year-old, and he and I celebrated my birthday by going alone to Target together. There, we selected a special bookshelf for him to use for his creations and we also chose two sets of plastic drawers that we are now using to organize his Legos by color. He was sweet and held my hand, and sometimes, we chatted, and sometimes, we were silent.

When we got home, the Viking got to work putting together the shelving. Dubya and I sat next to the giant Lego bin, overflowing with literally thousands and thousands of Lego pieces, and began sorting them into the drawers. He was in charge, designating larger drawers for the colors that likely had more numerous pieces, and determining that off-white should go into the "brown" drawer rather than the white.

And as we sat there together, just the two of us, tailor style, sorting Legos, our knees touched. We sorted and sorted, and chatted a little, engrossed in our activity, knees in contact the whole time. And Dubya didn't even seem to notice. He didn't once try to pull away from the touch.

I hadn't realized after all these years, as I moulder on into my fifth decade, that birthdays could still be so important.

How do you talk about autism with your child?

TH's interview below has been an exciting experience for him. He was particularly thrilled to hear from autistic adults who felt that some of what he said resonated with them.

On the Facebook posting of that interview, I got a question from one of my Facebook friends who also works with autistic children and who has a child of her own with specific needs. She noted, "I'm not sure how to talk with parents who want the fact that their child has autism kept a secret from the child," observing that she thinks there is value in speaking honestly about their experiences, good and bad. Then, she asks, "Any input on how to talk with parents about the decision to talk about autism with their child?"

I think this is a fantastic question and one that every parent of a child with differences faces. As our interview indicates, we're quite open about autism around our house. But of course, at one point, TH wasn't as self aware and didn't really know what autism was. And I remember clearly when we initiated the discussion about autism because I blogged it, two years ago this month, as part of Autism Awareness Month. Except I was working on his awareness of his own autism.

We started slowly. He was five and still not particularly linear in his communication or handy with receptive language (both linger today, the latter more so). And then, we just dove right in, using as our starting point Autism: The Musical, which TH had watched, rapt. I've found that having a movie like this to watch (as we did with the Temple Grandin biopic) can make segues into discussion and revelation about autism more natural than, say, my just popping off about it while we're going to get gas. It doesn't make it seem portentous or as much of a non-sequitur if there's some external reason to bring the subject up. I wanted him to be aware, but I didn't want him to feel excessively self conscious about it.

Our process went on from there. It got to the point that TH was so comfortable with his autism that he was able to announce in class one day that he has it.

So, obviously, we long ago made the decision to be open with TH about his autism, not to hide his bright, cheerful light under a bushel. I can't even imagine being able to do that, anyway. How do you hide autism when it is, at its core, about differences in communication and self-regulatory behavior? Differences that show up pretty clearly out there in the big world. We could either have tried to keep it a secret from our son and left him to the torment of wondering why in God's name did people think he was so weird, what's wrong with him...or, we could have opened his mind to his differences, the good and the bad, and let this awareness make him comfortable and understanding of who he is. We chose the latter.

And that takes me back to the original question that this teacher and parent asked, ""Any input on how to talk with parents about the decision to talk about autism with their child?" All I can say in response is, the more a child knows about and understands themselves, the better they will be able to navigate this world. And that applies regardless of whether they are autistic. As for how to go about it? That depends on the child. With TH, our mantra was, "Everyone's brains develop in different ways. Yours developed in a way that results in something people call autism. And here's what that can mean..."

I think that for autistic children, awareness of their autism to whatever extent is feasible is just as important as others' awareness of it. Speaking of which...to round this up, I take you back to two of my original 2008 posts bookending Autism Awareness Month. Near as I can tell, they still apply. I infer from this that not much has changed in two years in the great big world out there. But, as TH's honest and unselfconscious answers to our interview questions illustrate, his own awareness has come a long way, baby.

Bookend 1: April 2, 2008

Bookend 2: April 30, 2008

Interview with an autistic child

Today, as we near the end of Autism Awareness Month, I thought I'd bring you something I haven't seen much before. I've come across a lot of great interviews at Parentdish (mind the comments) and BlogHer and abundant commentary from adult autistics, siblings, and parents alike. What I have not seen is commentary from a child living with autism. (And I suppose I can say it that way because...well, if you read over here, you'll find the genesis of that brouhaha).

For obvious reasons, many autistic children are unable right now to articulate their lives. TH and I have discussed this issue before, and he has expressed a wish to let people know what autism is like, at least for him. We have made that a part of a homeschool project, and his hope is that he can grow this information into a useful book for parents and children. TH always has huge plans for books, art, comic strips, and games that he's devised, and it's his lifelong dream to one day get a photograph into National Geographic.

In keeping with our work on his project and to expand the perspective on Autism Awareness Month, below I bring you a Q&A session with TH, an autistic 8-year-old. For some folks, none of this will be news, but perhaps others, maybe even a parent who's terrified by that fright-wig of a blog over at Age of Autism, might find some comfort and increased understanding in what TH has to say. Perhaps, even, teachers or parents presenting about autism to classes could find some use in it. If you do, please let us know. I think it would please TH to know that his information helped someone. If you have questions for him that you think he might be able to answer, please feel free to post so we can perhaps add them to our project.

You'll note that much of what TH does that are considered "classic" autistic behaviors are, to him, about "releasing energy."

Interview with TH, age 8. (Responses are verbatim with non-sequitur interjections and vocalizations not included).

On noises

Q: Why do you hum?

A: It helps me get all my energy out. When I'm excited, I do that the most. It can also help me concentrate.

Q: When you make the "eeeeeee!" noise, what's that about?

A: It's when I feel good.

On eye contact

Q: Do you have trouble looking people in the eye?

A: Sort of.

Q: Why is that?

A: It's sort of scary for me because I haven't done it that much.

Q: Why do you think you haven't done it that much?

Well, probably because I was sort of afraid, scared also, back when I was in kindergarten.

Q: How do you feel if you try to look somebody in the eye?

A: Weird. Tingly.

Making faces

Q: When do you think you make faces the most?

A: When I'm excited.

Q: What does making faces do for you?

A: It makes me feel good because I sort of like doing it. I guess I have a lot of energy so I do all that stuff.

On hugs and contact

Q: Temple Grandin apparently didn't really like people to touch her, but she liked being squeezed by non-people things. Do you mind when people touch or hug you?

A: When someone touches me, it feels really disturbing. When someone hugs me, it's a little bit better.

Q: What about if you're squeezed inside of something, a blanket or something like that?

A: It sort of makes me feel better. (Q: How?): By letting out all my energy, and it's sort of comfortable. When they put me through the "squeeze machine" at the school, I felt better, I sort of felt comfortable.

Q: You squeeze my arms all the time. In fact, you are doing it right now. Why is that?

A: Because I like you. And I like squeezing things.

On flapping

Q: Why do you flap?

A: Because I'm excited when I flap. It makes all my energy go out.

Q: Are you aware when you're doing that?

A: Sort of.

Q: Do you think other people notice it?

A: No. (I loved this answer. Obviously, people do notice it...but he doesn't care).

Social interactions

Q: Is it hard for you to understand other children?

A: Sort of.

Q: What do you find hard to understand?

A: What they do, basically. I didn't like being in big groups. It made it confusing.

Q: What is it like when you meet new people?
A: It's sort of scary. It's embarrassing. If I meet people out in public, it's embarrassing the most, and I don't even know why. It's just extremely embarrassing.

Q: Do you feel like you know what to do when you meet new people?

A: No. (I want my money on that social skills training back now, please).

Comments on being autistic

Q: Do you like being autistic?

A: Yes.

Q: What do you think about autism?

A: I think it's sort of a good thing.

Q: Why do you think it's a good thing?

A: Because I like it. You can be smarter about some things, and you're also better at some things, like being excited, getting all your energy out. You can smell things really good. Another thing is that you see really good. I can list a ton of bad things about being autistic.

Q: What are those?

A: It's sort of hard to do things in class, especially first grade. Another thing is that you're being bullied. And it's sort of hard to concentrate.

Q: Why is it hard to concentrate?

A: Because you're so distracted by other things that are more exciting.

Q: Like what?

A: Like just looking out this window (he points to a large window through which much vegetation and many birds are visible), and forgetting everything else.

Dining with Andrew Wakefield

It's happened to me three times now. I suppose it's because we live in the same ZIP code, although his square footage and yardage in said ZIP code undoubtedly dwarf mine. I suppose, had I wanted a million-dollar home, I should have gone to a birthday party and...oh, nevermind.

What's happened three times? I've found myself dining in a local restaurant with Andrew Wakefield sitting mere feet away from me. I've posted about the experience before. It's surreal to see this man, whom so many have made the angel or the Lucifer of the autism/vaccine controversy (reminds me of another "controversy" that somebody just made up that's hit the big time). Making a controversy can mean big bucks, you know. People who don't give a rat's ass about actual data or the scientific method or even formulating a hypothesis can turn instead to marketing and use their "controversy" to write books, be on television, and otherwise bluster their way through the fact that the only thing supporting their stance is a lot of hot air.

In any case, the upshot is damage and misinformation, some of it life-threatening, as when unvaccinated children spread disease in their communities, and some of it mind-threatening, as when school boards latch onto intelligent design as a putatively viable option to teach in public school science classes. For those of us who are content to live in modest homes and slog through real science and grapple with real facts, this kind of "science as marketing ploy" can make us tear our hair out. But at least we can sleep at night.

What I hadn't encountered before last night's dining experience was Dr. Wakefield with offspring. I know he has a son (hey, so do I!) because it was at a birthday party of a child of his own that the infamous pediatric blood draws took place. And I have to say that it was odd seeing this man--Lucifer or an archangel, depending on your embrace of science--sitting there with his boy, watching a British soccer match, drinking a beer. One of my table mates pointed out that his shirt was unbuttoned to a level that one might consider a tad risque (or, ewww), but that didn't detract from my first view of Dr. Wakefield as a father, a parent. Sitting there with his boy, quietly watching soccer.

He's a large man. Everything about him looms, from his seemingly constantly contracted brow to his height. Had he been anyone else, my observation would simply have been to think how sweet it was to see this dad there, having an evening with his boy, enjoying sports together and obviously enjoying one another's company. But I got distracted by other thoughts. Thoughts like, how would his boy see him later in life? Would his father be to him a prince or a pariah? We all change in our opinions of our parents as we get older, shifting our perceptions as our understanding grows. What will happen with this boy as he--if he--learns more about his dad?

Of course, the other people I was with turned the conversation to, yes, MMR and vaccine reactions...and they did it without even knowing how odd the nexus was of the topic and the large man sitting right there. One of my friends has a son who had a horrific hemolytic reaction just after having MMR, and although I'd heard the story, another of us had not, and the entire thing was related again. And of course, two of us being special needs parents and another of us being a teacher of special needs children, the conversation turned to autism. I sat there, wondering if Dr. Wakefield could hear it, or if perhaps he simply felt a miasma surrounding him, populated by the whispering ghosts and the demons of the madness he created. And would someday his child hear it, too?

Where does happy come from?

My children are all different.

Profound words, those, right? Um, duh.

But one thing that sets them apart with boundaries so clear they may as well be separate nation-states is their dispositions. Already, at their tender ages, their fundamental take on life, the universe, and everything has come into full relief.

The best word I can use to describe TH is insouciant. The child lets everything roll off of him, whether it's a bloody head wound, a near-mortal emotional injury, or an order to take out the trash. His periods of upset last approximately 2 seconds, then the clouds pass and the little sunshiny, ebullient boy bursts through again. Right now, as he is now, I don't think that child could be unhappy for longer than a minute, even if I offered him 10,000 Pokemon cards as a bribe. In fact, I think one reason he likes Pokemon so much is because the cheerful, round-eyed Pikachu is like a quick anime representation of his very self. He's a sucker for all forms of broad humor and works daily on writing and telling jokes. (A sample: I was explaining to him why John McCain may have chosen Sarah Palin and mentioned that some people find her attractive, and he said, "Oh, so she was his Sugar Cain?").

How to describe Dubya? He's a conundrum, but one thing he isn't is happy. Unless he's left completely alone, to his own devices--which largely include only building things with Legos, possibly listening to the Indiana Jones soundtrack on his father's ancient iPod--he's not gonna be happy. While I've already realized that I won't truly know or understand this child until he's much older, until that little body and those turbulent emotions play catchup with his overwhelmed, Boschian mind, I also know that he does not have a native tendency to happiness. All of his filters are set to autonegative. Humor just irritates him, or makes him smile against his will. He hates to be touched, doesn't like to snuggle, and resists all efforts at positive attention or compliment, no matter how low key. He's a deeply gentle, kind, sweet person, but for him, the negative always outweighs the positive.

And then there's Little. Another happy one. Tells me about 50 times a day, spontaneously, that he loves me. Shares spontaneously with his brothers, with us, with friends. Hugs. Snuggles. Obsesses about dinosaurs. Laughs frequently and loudly. Can't resist broad humor or a tiny tickle under the chin. Like TH, he's rarely angry and quick to snap out of a cranky moment. He's not quite as insouciant as TH and definitely a measure more irascible, but the child's overall demeanor is cheeriness.

I know for a fact that as a child, I was happy...at least until I started school. I've always thought, even in some dark dark moments, that my native tendency is to be happy. I like humor and jokes and indulge in them constantly and have an unnerving tendency to take very few things seriously. Is it a defense? I don't know. I just know that I feel happy a lot.

The Viking? All I'll say about him is, the more downtime he has, the happier he is. The man is a very private person, so I'm not going to dissect his psyche here.

Where does a native tendency to The Happy come from? What does it bode for the future? I watch my children and find that the one I worry about most is Dubya. And I think it's because his default setting isn't to cheerfulness. And by that, I don't mean put-on, insincere cheer, but real, to-the-bone, this-is-how-I-am default cheeriness that emanates from his brothers. There's no cure for what ails Dubya. In addition to worrying about whether or not to force him to walk across a stage, I also worry: Will he ever feel truly happy, and is there anything I can do to facilitate that?

What's the limit on facing fear?

Dubya's grade is having some sort of "yay for reading!" day at school. It requires each first-grader to select a character from "classic" children's literature, dress up as that character, and parade across the stage in a kind of "fashion show" way while an emcee describes the costume.

I probably do not need to state that this event is not viewed with pleasant anticipation around our house. In fact, Dubya has been in tears over it twice, repulsed at the idea of dressing up as some character from a fairy tale (these were the typical recommendations) and terrified at the prospect of parading around in said dress-up in front of a cafeteria full of students, teachers, and parents.

Tears. And that "petrified face" that children make when, well, they're petrified.

Yet, I'm pushing him. I'm not thrilled about this either, for various adult reasons. I don't see that it's enhancing his love of anything, much less reading. The instructions say to make costumes from things around the house, but...come on. In this district? The production values on this thing are going to be high. And I don't like to see my son terrified and driven even further down the road to hating school.

But I'm pushing him to do it, anyway. One of my resolutions is that I will do what I can to have my children face their fears. I explained that to Dubya and assured him that I wouldn't do that if I thought it would truly hurt him. I also explained to him that for his teachers, this event is something they thought would be fun. I told him that it may be that many people participating in it will think it is fun, even though he doesn't, and that he can stand it, even though he doesn't like it. Sometimes, we just have to soldier through a certain amount of crap. I didn't say that, but that's the general philosophy.

And I discussed with him that for about five seconds, people might look at him and think about him, but that other than that, no one will pay any attention to him at all. Part of his fear is genuine panic about crowds and social settings, but part of this is about a native narcissism he has retained from earlier childhood. So...we're walking a fine line around here, addressing fear and anxiety but also trying to chip away at the perception of being the center of the universe, the "cynosure of all eyes," as Jane Austen would say.

To appeal to the rational part of him, part of my argument consists of pointing out that those few seconds will be an infinitesimal part of his life, of what hopefully will be a full and less fearful life. I argued this even as my entire reason for pushing him is for him to learn a big lesson: That he can face this fear and survive. Do all parents have this paradox, this hopeless argument of "it's not a big deal (but it's a very big deal)?" In the end, isn't everything, big or small, a big deal, moving events forward as they may?

Ultimately, after some tears and sighs and abject fear, he decided on Frank Hardy of the Hardy Boys. This character appeals to him because it requires very little in the way of costumery. In fact, I only talked him into it after I assured him that he could carry the magnifying glass in his pocket, rather than in his hand. The lower profile here, the better.

He's still upset, and this fashion show isn't until later next week. I'm sure there will be more fear and anxiety, more explanations. And despite my surety that he needs to face fear and by association learn that he's not the center of the universe, I worry. The softer part of me (where did I leave that, anyway?) wants to keep him home that day, shelter him, excuse him from what I know will seem like an eternity of anxiety. In fact, when the moment comes, I'm not sure he'll even be able to do it. And that leaves me with the gnawing question: Is it pushing him too far when his fear is so great--or is the lesson worth it?

Teaching TH...and learning from him

My favorite eight-year-old and I are currently working on multiplying two-digit numbers by two-digit numbers. This is a process, and when it comes to TH, processes have more steps than you might realize. For example, while he can multiply in his head without trouble, showing his work, aligning numbers in columns, writing numbers legibly--these are a struggle. I consider it my duty to focus on things that are a struggle to him, so I've been insisting that he align his numbers in columns as he shows his work.

"Trust me," I offered, "when these things get more complicated, you'll need these numbers lined up like this."

"But I can tell where they are anyway," he demurred.

All I had again was "Trust me," and "What we're doing here isn't only working on math. We're trying to address other things that you need to work on most."

At which point he volunteered, cheerfully, honestly, and completely out of nowhere, "I also need help on hygiene."

He came across the hygiene concept watching the Temple Grandin movie. There's a scene when a magazine editor parks a can of spray deodorant in front of Grandin and tells her to use it. She unquestioningly agrees. This scene required some explanation, and TH seemed to recognize that an awareness of, well, certain things was probably also not naturally in his repertoire. I guess I should consider introducing health class into homeschool.

I also should consider some of the wisdom this child has to offer me. We had a minor catastrophe yesterday. The phone rang. I answered. It was some poor desk worker from the office where we'd booked a summer home for several weeks this summer. She stumbled around for a few minutes before getting to the point, which was: The place we'd booked, signed a contract for, and made a deposit on, was not available. (I have not ended that many phrases with a preposition in I don't know when). Someone had fubarred, she said, not exactly using that term, and the existing occupants weren't going anywhere until October.

Man, was I pissed. My first mental response was, If I have to stay in a tent, I'm still going. My second mental response was, Damn, you people are incompetent, and you may well have ruined the complex summer plans we've made, which involved much contorting and declining of other summer plans and various permutations too esoteric to get into here. My third and final thought was, I'm pretty sure we'll be able to find another place.

Before I got to thought #3, however, I'd indulged in some expressions of, shall we say, unhappiness about the situation. On the phone, what I mostly said was things like "Holy cow" and "Are you serious?" After all, she was just some poor lackey who got the job of dealing with me. Off the phone, I vented a bit more, mostly on the phone to the Viking. Kinda loudly. Remember, I also homeschool. And as I often point out to my highly repetitive children, ears are always turned to "on."

Today, after we'd walked our hike-and-bike trail together and were in the car on the way home, TH asked me about the situation. He's against the summer plans for reasons that make sense only to him, but he was nice enough yesterday in the midst of my upset to say, "I'm sorry about that, Mama," which I thought was kind of a breakthrough for him.

In the car today, he first asked me if they were going to send back our deposit check, and I responded in the affirmative. Then, he asked me, "Will you not be able to find another place to stay?" And I said, "Well, yes, we probably will." And he thought a minute and then observed, "Well, if you're getting your check back and you're going to find another place to stay, I don't see why you got so mad about it anyway."

He has a point, does he not? Leave it to an eight-year-old Aspie to make grownup irritation seem completely irrational.

Watching "Parenthood"

Like many parents in the autism blogosphere, we've been watching the show "Parenthood," which features a child who is diagnosed with Aspergers. Naturally, our reactions are deeply personal and critical, even as we recognize that no two autistic kids are alike. I am enjoying the other parts of the show better than the Aspergers story line for several reasons, primarily because they keep resolving the Aspergers stuff so easily and quickly. If only.

Case in point: Max, the son with Aspergers, knocks over and breaks a fish tank at school. It's the final straw for the administration, and they kick him out. First of all, can public schools even do this without offering another method of education? FAPE, anyone? The parents, desperate to get him into a decent school and faced with the prospect of homeschooling, beg and plead the head of an expensive school for kids like Max to let him in. Cliffhanger ensues, resolution is immediate: their begging works.

I know that our reaction to that was, "Huh"? Wouldn't it be great if a little begging could solve problems like that? The more realistic outcome would have been that the mom would have had to homeschool Max for at least a few months, learning more about him, gaining insight into his learning style and how to reach him. Or that the parents wouldn't be able to afford a $55K/year school for autistic kids. These scenarios alone are far more realistic outcomes for the vast majority of us. But my favorite (or not) part came when they dropped Max off at the school that first day. They're walking him down the hall, and he lets go of their hands to rush to class. In a brand new school. In a hallway full of strangers. He's supposed to be worried about the time. I'd buy that, I guess, if my own autistic eight-year-old could even tell time.

As I said, we're aware that no two autistic people are the same, but I've never met a single autistic child who would have had that reaction in that situation. In fact, I've yet to really see much that's recognizable to me about Max, except that he obsesses on reptiles and bugs. But behaviorally, the depiction has so far been sketchy at best. He plays baseball. He can focus and actually catch a baseball. Sure, he wears a pirate costume to school--so quirky!--but does he dress himself? Zip his pants? Remember to wear both socks or matching shoes? Put tags on the inside?

The most recent episode involved the arrival of a cute, precise behavioral therapist who apparently makes appointments that last from morning to night. At one point, she bribes Max to befriend a girl by offering to let him get a lizard in exchange. A lizard. Doesn't this woman know that those things require live food, like crickets? Damn. I'm sort of kidding, but once again, the behaviorist magically resolved problems in a matter of minutes, leaving Max's mother feeling ineffectual and helpless.

I'd probably have felt that way, too, had any therapist ever had such an immediate effect on any of my children. But they didn't. We worked, together, for weeks, months, years on behavioral modification, motor skills, and social skills. There were no magical moments of hours of foursquare (the Viking's observation here: He can play foursquare?!) in exchange for a pet. We're probably spoiled by the slowly unfolding, intense, detailed story arcs in "The Wire," having not watched "regular" television in a long time. But are resolutions always this quick?

One thing about this story line did ring true for us: Max's mother expresses to the therapist that her life is one of constant worry and anxiety. That's the single part of the story arc that really grabbed me. I've often wondered if parents of neurotypical kids worry as much as we do, if they ride a roller coaster that has such deep dips and unforeseen turns. Or do they get to relax a bit, observe their agile, athletic, academically able (quadruple A!) children doing so well, and think, "Wow. It's going great. Woohoo!" Do they actually live through the day without troughs of anxiety that any new situation or new encounter or new manifestation can bring on for those of us with single A (autistic) children? I think maybe they do. I don't know, because I haven't lived it. Just as they haven't lived what we do.

And that may be one benefit of this part of the story. While I don't think the writers are doing that well at showing autism, they're pretty decent, ironically, at verbalizing it. We never see much of Max's autistic behavior, but his parents and his sister have verbally depicted it, describing Max's actions and their reactions. I think seeing relevant behaviors would be more profound and enlightening for all viewers, not only autism parents. But maybe for people who haven't lived it, those words will ring true enough to enhance some awareness, somewhere. Me, I prefer the deeper and more satisfying storyline of Crosby's easing into a newfound, ready-made fatherhood. Obviously, that's less personal to me, which probably makes it easier to enjoy.

An ode to a bed

TH asked me the other day what my favorite thing--"that was not a person"--is. An object, he demanded. With little thought, I knew the answer pretty quickly: Our bed. By that, I mean the bed that the Viking and I share. We are not--repeat not--like the couple in Away We Go who has the entire family sleep together in some oversized bed-like contraption that looks like it was built by hippie elves. Well, we're not like that on purpose, anyway. Our children often have other ideas.

I love that bed. A lot has happened there. Not just that. Ahem. You know, you can do that anywhere (from what I hear). Some of the things that this bed has seen, though? There's only one place for them: a bed.

First of all, it's a futon. King sized. On tatami mats. Assembling the frame is a huge bitch because it's like a giant, two-hundred pound puzzle. So we have to know exactly where we want it because once it's built, we're not gonna unbuild it again until we move. The tradeoff is that this thing is sturdy as hell. We know this because our children's best efforts to destroy it have yet to succeed.

My favorite part of the day is finally tucking into my side of the bed (which usually happens at about 11:30 at night), reaching for my book, and letting my weary, worn, irreversibly aging body relax into that firm, unshakable futon mattress. I could do jumping jacks on my side of the bed, and the Viking, about three feet away (king size!), would never know. This kind of immobility is handy when there is vomiting or noseblowing or general restlessness taking place on one side of the bed or the other. The Viking has managed (or so he says) to sleep through many a night of family gastrointestinal trauma, only to waken to the dawn of at least a couple of us rolling around next to him in utter misery. The Viking himself never succumbs to gastroenteritis. I think that's how they managed to stomach lutefisk.

This bed has seen a lot. We slept with a baby TH in this bed, having purchased it after we realized that (a) we needed to sleep with him if we were ever going to sleep again, and (b) putting a big Viking and a little Viking and one vaguely Northern European-derived female in a queen-sized bed also meant we would never sleep again. The king-sized bed is enormous. It can easily sleep a family of five. I know this because we've occasionally slept a family of five in it. Well, some of us slept. Being tired enough to ignore repeated kicking is key.

We also had a baby in this bed. By that, I mean that I had a baby in it--Dubya. It wasn't easy, but it was far better than a hospital bed and hospital lights and epidurals and nurses screaming pushpushpush at me and beeping shit all over the place and someone trying to extract my newborn child from my arms within minutes of his emergence. Instead, after about 4 tense hours, I had my middle son, got into a lovely warm bath with him, and had my mother bring me a cheeseburger and fries from Wendy's, the only place open at 11 pm that night (childbirth makes a gal hungry). I tried to have our third child in it, too, but instead I spent two weeks lying around on the bed in a blood-pressure-induced daze before being forced to give birth in the hospital, as had happened with TH.

I've snuggled children in this bed, read countless books to myself and them, held towels and buckets under their heads while they hurled, comforted them after nightmares, awakened almost daily in a little Viking sandwich with at least one child on each side of me, driven to my side in the middle of the night by dreams of crocodiles or dragons. We've dogpiled there on a lazy Sunday and taken refuge together under the blankets during storms. I'm not the only one who loves it, who finds it a haven. Apparently, it's also a lot of fun to spend time under the bed, but I haven't tried that out.

So, it was easy for me to answer TH when he asked me what my favorite object in the world is. Nothing else holds the record of memories for me or gives me comfort like that bed does. It's what I miss most when we're on trips and what I enjoy most when I'm at home. It helps that right there, not quite at arm's length but about three feet away, I've got my favorite grownup Viking, too.

If TH were ever to ask you the same question (which would require considerable lessening of his stranger-related anxiety), what would you say?

What's the point of awareness?

I ask myself this question when I think of autism awareness month for several reasons, but the main conundrum for me is this: If even some parents of autistic children--who obviously are keenly aware of autism--cannot take the next step and accept their children for who they are, what's the point? While Smockity and her ilk make a good case for a simple awareness campaign--God knows--I've found personally that awareness doesn't mean much if the newly aware person doesn't have an existing instinct for acceptance.

These instincts matter. We've made many people aware of our son's autism. The responses range over a spectrum from kind and understanding acceptance to the "I don't like labels" (as if their preference in this situation mattered) to an almost stated implication that we use autism as an excuse for our son's behaviors. The thing is, I think that people whose reactions are kind and understanding are kind and understanding people anyway, and the "It's all about what I think" people are like that all the time, and the "I judge you as a parent" people are simply like that all the time, too, awareness or not of autism notwithstanding.

Like most of us, I've been in the shoes of someone who was not aware of autism before I became aware of autism. Before I had children, back in the mid-1990s, I taught middle school. You've done your time if you've taught middle school--these kids are at the most befuddled age, confused and caught between childhood and adulthood, cool and collected one minute, silly and stupid the next, and the only predictable thing about them is their unpredictability. I loved them.

One of my students had a rather odd mother who told us in our initial parent-teacher meeting that she'd saved her son from being autistic. When she said that, nothing much registered with me except some sort of instinctive understanding that her son had exhibited a tendency to shut out the world, and she'd done some things to rescue him from that. Thus opened the door, just a crack, on my awareness of autism.

Her son was a funny, dry-humored boy, and when I consider him in retrospect, I don't recall anything that stood out for me behaviorally that would have caused me today to think, "Oh, he's from France." One day, he and I had a lively and humorous exchange in class in which he participated seemingly with enthusiasm. But with this age, this group, it's hard to tell what's a cover and what's real, and he apparently was more upset by our repartee than he let on. His mother called me in a rage and accused me of practically reverting him to his formerly autistic state by embarrassing him. It was an upsetting accusation, leaving me with some vague impression that I'd inadvertently sentenced this boy to some dark, internal hell from which he'd only just escaped a few years earlier.

I talked with her son at school the next day to apologize for hurting his feelings, and he seemed to be his usual calm self. He also seemed to be embarrassed about the brouhaha in general, so we made our conversation quick, his having accepted my apology, my having learned a lesson about these still-tender shoots I was teaching, that their outer appearance of cool was often simply bravado masking a raging, early adolescent insecurity.

In spite of my greenhorn status when it came to these subtleties of student interaction, I'd already established with my students one of my defining characteristics as a teacher: I liked them all. I accepted them all. I think that's what the best teachers do: We accept our students, we see the potential in every single one, we don't dismiss them or blow them off just because they require extra creativity on our parts.

I don't brag to all and sundry about my vast assortment of talents, but one thing I can say, thanks to consumer-driven college education, is that my students think I'm a good teacher (although you'll find that the opinions are not unanimous). While that's great to know, I'm not telling you that to toot my own horn, but to use myself and my experience as an example. I've known teachers from the middle-school level to the university who vigorously hated some of their students, who targeted them with punishments and suspicion, who expressed disdain for these children and young adults they taught. It pained me to know it--I'm sure I had teachers who felt that way about me--and it was so different from how I felt about my students, how the other good teachers I knew (and know) saw these young minds in their care.

Long before I truly became aware of autism, my teaching adventures taught me a lesson of a different sort that applies across an array of life experiences: A fundamental adjunct to awareness is acceptance. Even when there's no label to guide them, good teachers--and good people--accept others and recognize and embrace their potential. And no matter how aware you make them, bitter, mean, narcissistic teachers--and people--are gonna stay that way unless they decide to change themselves. Some people accept without awareness, while others can be aware and still condemn. So, what's the point of an awareness month if acceptance remains out of reach?