Smockity hath apologized--where do we go now?

The center of the recent storm over other people's perception of special needs children has apologized. I've seen different levels of reaction to the apology, ranging from full to modified acceptance. Everyone will have their own perception of apologies and their sincerity, in real life and in the virtual world. It's up to each person to determine how sincere they believe an apology is. I know that when I watch my children apologize, often what drives the apology is more the concern that they're in trouble than real concern about the injured party. But I also know that when I, as an adult, apologize, I mean it. I try to apologize without qualification, and I try to model it for my children. I say, "I'm sorry, I shouldn't have done that."

How do I view Smockity's apology? I'm glad she did it. As I have commented on some other blogs, my guess is that even pre-apology, Smockity was thinking about this episode, the furor it caused. Maybe she read some of the posts about it and understood some of the pain the parents who read her post felt. I felt that even in her defensiveness, she must be absorbing this information, and that next time something like this happened, she'd think not only twice but also more deeply about what she was seeing. That she would, in a phrase, be more aware.

Smockity describes herself as having been a teacher for several years. It's striking that in that time, she had not encountered or recognized an autistic student, but perhaps she was teaching in a specialized situation, such as a small private school, where such encounters would be more unlikely. I've run into this myself with our son, with experienced public school teachers, for example, who did not know that humming was a classic autism stim. My take-home message from situations like these is, We have much more work to do to make people aware of what autism is. While it's entirely Smockity's fault that she mocked a child, it's not her fault that she was unaware of the signs of autism.

Movies like the Temple Grandin biopic and books like the Paul Dirac biography are great starts to educating people about the spectrum and potential of autism, but I think that they tend to attract the choir. Don't get me started on the notorious and notoriously misleading Autism Speaks video or the narcissistic rantings and child vilification that goes on over at Age of Autism.

This is the month for Autism Awareness. Of what should people be made aware? I once thought that the priority was the needs of autistic people, young and old. I still think that's a priority. But given the Smockity debacle--her lack of awareness and that of many of her commenters--I think we also need to set a more educational priority. People need to know what autism really is, as autistic people live it. Mom-NOS did it at the grassroots with her classroom presentation about autism and her son. We did it, to good immediate effect if not long-lasting outcomes. How do we make that happen on a broader scale, now that we've taken a small baby step with Smockity? Do we continue on as we have, one baby step at a time, occasionally like the Red Queen in Alice, fighting a negative tide so strong that sometimes, it feels like we're running in place?

Branching out, hoping for Nobel prize

We've been following the K12.com curriculum pretty closely for literature, grammar/mechanics, and spelling. It's worked out so well for us, and TH has even figured out how to go to the Website and check in the morning for what "they" expect us to do that day. As I've mentioned, it's helpful to have a "they" around to keep a little distance between me, the teacher, and what I'm teaching. It's not all coming from me, you see. I've got "them" to blame, too.

But in some ways, as we've settled in more, I've started to loosen the leash and branch out away from their defined curriculum. We do that all the time in small ways, stopping to google this, map that, investigate over there. These have been fun forays, and just one example of how the flexibility that homeschool allows can keep the interest of a child like TH.

And we've now made some longer-distance forays. Math is one. I've abandoned the K12 book in many ways, using it only as reinforcement as TH works through multiplication of two-, three-, and four-digit numbers and mastering his 0-12 multiplication tables. He's just a boy who benefits most from repetition, practice, and the most straightforward ways of doing these things, so that's how we're doing it. And it's working well.

Naturally, we also have gone afield when it comes to science. TH "does" science pretty much all day long, walking around with his nose in a book about sharks or dinosaurs or insects or reptiles, regaling me non-stop when we're in the car or on the hiking trail with his various--and always accurate--facts and figures. This is a child who only today, as I was trying to remember the third period of the age of the dinosaurs, informed me that the periods were the Triassic, Jurassic, and Cretaceous. He then proceeded to tell me which species were around in which period. Boy's obsessed.

Given this sort of preternatural affinity of my son for all things sciency, I decided to stretch his brain a bit today. I perused my shelves for a college bio book--I have dozens of these, as we get review copies all the time--and chose Tobin and Dushek's Asking About Life. The edition I have opens with one of my favorite stories in biology, the tale of the scientist who tested on himself his hypothesis that H. pylori was responsible for ulcers, rather than stress-induced acid excess. In the face of derision from other experts, he proved himself right...after some stomach biopsies and other discomforts, and much to the chagrin of his wife.

In spite of his success and resulting new guidelines for ulcer treatment, doctors well into the 1990s were still treating ulcers with antacids, rather than antibiotics. And I note that ultimately, many other studies backed up his findings, failing to reject the hypothesis. That, my friends, is the practice of science. But I digress.

This edition of the book was published just before Barry Marshall (and his collaborator, J. Robin Warren) were awarded the Nobel prize for their work. So after TH finished reading the hair-raising story of the discovery, I had the pleasure of telling him that Marshall had won the Nobel in Physiology or Medicine for his adventures. I happened to mention that, in addition to being the highest award in science, it also came with a bit of monetary reward, too.

TH was immediately taken with this idea and quickly laid out his Nobel-related plans. First, he's going to make a major scientific breakthrough this year. Next, after learning that people must often wait years before the significance of their work is clear enough to merit a Nobel, he determined that he will have to wait until he's 18 to win the prize. Finally, he's going to keep half of the award money and give us, his loving parents, the other half.

While I sat there, torn between admiring his hopeless ambition and his newly manifested ability to plan something, I also was grateful that he, in his youthful generosity, was so willing to give up several hundred thousand dollars to his needy parents. I can't wait to go to Stockholm in 2020 to watch him receive our retirement fund his prize.

The girl at the swings

Last week was our spring break. We didn't go anywhere until Thursday because Dubya had a neuropsych evaluation midweek. His therapist has told me that she thinks it's likely to come back as Asperger's. Once that process--which took about six hours--was complete, we packed up our car and headed for the great metropolis of Waco, Texas. Where I grew up. Where I never, ever intend to live again, although I have a renewed appreciation for its wide streets, tall trees, milder weather, and this one burger joint at the intersection of Herring and 18th street that serves up the best cheeseburger in the state.

We go there because my sister and her family and my mother still live there, and we like them, regardless of our otherwise mixed feelings about my hometown. And my parents' hometown. And my grandfather's hometown. And my great-grandparents' hometown. And my great-great grandparents' hometown. And...well, you get the idea. These aren't people who move around a lot. Add to that the fact that for reasons known only to the cosmos, the Viking's father is also from Waco (we did not meet there, had no connection there), and, well, Waco still looms large in our lives.

As part of our festivities, we went to a local park adjacent to an elementary school. Waco's spring break was already over, and school was in session. There, at the playground, was also a young girl, about 13 years old, with her little cousin, a boy about five. She was visually arresting, sporting a green school t-shirt from a district 100 miles south, long drooping hair, and slashed, fingerless, black elbow-length gloves that didn't seem quite to mesh with her t-shirt/faded bell-bottom jeans/Converse attire. The first thing out of her mouth to us was, "The teachers at this school are mean. They kicked us off the playground." Not exactly a smooth segue into conversation, and each of the three adults immediately detected something...unusual...about her.

And we didn't care. She engaged with all five of the children we had there at the park, arranging a hide-and-seek game, a tag game, and swinging. She especially interacted well with TH, seeming to take in stride his various awkwardnesses, non-sequiturs, and other behaviors that usually send children on a playground scuttling.

We watched carefully, as we always do, but there wasn't any need for it. This interesting, awkward, direct, ingenuous girl made a fairly humdrum trip to the playground an event for all of the children. We also had the other not-insignificant benefit that we adults got to sit around on our butts the entire time, watching, rather than pushing swings, climbing on playscapes, performing urgent rescues, or declining repeated invitations to race. My sister observed that when she was that age, she would never have been so open to playing with a group of strange kids like that. And I agree--it's rare to find a teenager--to find anyone--who has so little self consciousness (or is it total self acceptance?) to behave as this girl did that day.

School let out, and it was time to go. We encouraged our children to say their friendly goodbyes and packed up to head off to yet another fabulous Waco destination. But our kids had enjoyed a wonderful time at the playground, thanks in no small part to that young, unusual girl at the swings, who took them in hand, who didn't judge, who just accepted everyone--including herself--for who they are.

What Smockity reveals about us

Sometimes, they smile at you with what looks like understanding. There's an "I get it" to the unspoken communication, or at least a lack of overt judgment. I love those people. They confirm my unswerving belief in the fact that all of us are worth something in this world beyond the immediate behavior being manifested. These people bring themselves into our lives for just a moment, sometimes in the most frazzled of moments, in the kindest of ways.

We get these smiles often when we're on our local hike-n-bike trail. People see us coming, see certain gestures or a way of walking or hanging on me for support or even catch the odd (and I mean, odd) phrase of the moment. And they smile, kindly. Sometimes, even our eyes meet, understanding flashing between us.

But some people do not smile. On that same hike-n-bike trail, we once had one of our most memorable incidents related to judgmental people and autism. Along the trail, there are water stations that offer cone-shaped cups for water. We always stop because, well, it's hot here most of the time, and cool water is a godsend. Once, we were lingering there after doing our loop, drinking our fill with our two youngest in the stroller and TH on foot. TH satisfied his thirst and then...likely either out of utter spaciness or because the ground around him was already littered with cups--he dropped the cup on the ground.

As I was trying to get his attention to pick up the cup--he was completely checked out--a woman next to him turned to her partner and said, loudly, "Look! He just dropped that cup on the ground. Just dropped it there!" And even as I tried to advise her that I, his parent, was standing right there and dealing with the situation, she persisted, addressing my son, "You need to pick that cup up!" and turning back to her partner to say, loudly again, "He's just standing there! He's not even picking it up!" At which point I leaned over to within two inches of her face and hissed, "He's autistic. I'm his mother, and I'm handling it." I've never seen anyone disappear as quickly as she and her partner did following that pronouncement. And TH? The entire time, he was utterly unaware of what was going on. I got his attention, finally, and had him pick up his cup.

So, we have The Woman at the Water Station. Her kind is few and far between in that willingness to be obnoxious and vocal in these negative judgments about our son. But her spoken words and clear offense are likely simply a more honest manifestation of what others--the ones who emphatically do not smile--are thinking. What that woman did that day hurt, it angered. I wanted to chase her down on the trail, confront her, ask her who in the hell did she think she was, hand her a pamphlet on autism, invite her to live our lives for awhile. The reverberations of that encounter went on for days. Even though two years have passed since that incident, I think about it every single time we walk by that water station. Lately, that's almost daily.

These cuts leave scars, and our scars accumulate with each passing year. Parents in our community have slandered our son at school and other places. They've mocked him to other parents, even to their own children. Even parents who know he's autistic have done this, without compassion. Their children, with knowledge in hand, have done the same. These cuts leave scars.

So, Smockity's words about a Child Like Our Own? They cut. Deep. They lay bare the anxiety under even the most bravura exhibition of I Don't Worry About What Others Think. They open wide the tightly closed door on all the worry, the concern, the awareness of other people's awareness of our children's differences. And they make clear that as much as we love and understand our children, as much as we believe in and live their right to be a part of their world, there are others out there who, prima facie, detest them, who judge us, who think of them only as brats or oddities or troublemakers or wanton litterbugs.

They are, like Smockity, those who do not deign to smile. They may continue on, untroubled by the pain they've inflicted. They may even post a link to Autism Speaks in a half-hearted effort to seem like they care. But the scars they leave? I wonder if it's worth it to them. It seems so much easier simply to give a kind smile.

Thou shalt not mock other people's children

This mother and I have some things in common. (Note: Smockity has deleted her post. But...it's cached here, so you can still read it and the painful comments. Thank you, O Google, for archiving the Interwebs. If cache fails, I also have a copy of it, with all the comments).

For example, we have children. We have expectations for our children's behavior. Our children take piano lessons. We both own Bibles, although apparently for different uses.

And, we appear to be at the opposite ends of the...um...spectrum on some other things. Some of those things have to do with differences in our perception of good behavior, while others have to do with our ability to recognize autism when we see it.

For example, when I take my children to a place intended for public use, such as playgrounds or libraries, I don't allow my children to commandeer all of the available facilities for their own use. If, for example, swings are limited and children in great supply, I encourage my children to share a swing with each other and take turns so that others can also use the swings. I want them to learn some awareness about these kinds of situations, about sharing. I think that this sort of awareness is especially important in children who may have a tendency to, say, perseverate on what they're doing, or who might, say, have a problem sharing things (I'd also probably be reading something like Endurance or Eiger Dreams or Framley Parsonage instead of the Bible under these conditions, but that's just me.)

As another example, when I see a child flapping, perseverating, and generally showing no real tendency to an innate understanding of social interaction, I would recognize that child as being, in the immortal lexicon of Susan over at The Family Room, "from France." As a member of our tribe. As autistic. I mean, damn, people. If flapping doesn't tip you off, accompanied by perseveration and repetitive speech, what will? A savant capacity to count cards? Rocking? Toe walking? (Did you see that? Right there is where I broke away from my sworn intent not to write angry about Smockity and her awful post).

Autism Awareness Month is coming up. I always feel ambivalent about it. What should people be aware of? That it exists? That we need funding for support for adult autistics, places for them to live? That when you see a child flapping in public and perseverating, that's a strong indicator that the child is "from France?" Is there an awareness month for "Realizing Not Everyone Is Just Like You"? Smockity, in describing this child and her behavior, seems to have had no idea that the child might have a developmental difference of some kind. Yet, she perfectly depicts the behavior of an autistic child. Clearly, for me, that is a huge dissonance. And clearly, those of us who are capable, autistic people and parents, have much work to do.

Some who have read Smockity's post have understandably taken issue with the self-congratulatory nature of it: Smockity is deeply pleased with her take on life, her kids, her Bible, her judgment. I have some self-congratulation of my own: I don't take comfort in describing the behavior of other people's children and mocking the crap out of the child while doing so. I've snarked around about parents on this blog only when the parent has been in-your-face aggressive or rude. Or, as has happened to us, the parent is blackballing or slandering my own child. But to devote an entire, snarky blog post to maligning a child with special needs and her grandmother while showing an utter blindness to one's self? I'm gonna continue to leave that one to Ms. Smockity-Mockity over there.

When formulating this post, I thought about being understanding. I thought about some sort of high road in which I tried to sincerely bemoan the clear lack of awareness inherent in Smockity's post and the horrible comments that accompany it. I considered simply using this as a moment to educate, rather than to condemn. But then, I noted that when one commenter had the temerity to note Smockity's continuing mockity, Smockity closed the comments down. Rather than acknowledge that perhaps she'd made a mistake, that perhaps this child was "different," that maybe the next time, she might view such an encounter from a different perspective, she persisted in the jocularity and judgment. Of a child. In my mind, that calls for condemnation. I wish she had done that with her pen.

As I read her post in all of its glorious self righteousness and sanctimony, I did wonder one thing at the close of it that she seems to have omitted throughout her mantra-ing and mockiting: What would Jesus do?

UPDATE: Squid is compiling a list of blog responses, so if you're just dying to read more, please check it out. Some are likely to be a tad more...measured.

Whence the badditude?

I've seen a few stories lately in several of the multiple media outlets I follow, bemoaning the lack of courtesy and civility in America today. If it ain't grownups spitting on other grownups, hurling racial epithets, or screaming in each other's faces until the spittle flies, it's children sassing the grownups, refusing to behave or comport themselves appropriately in public, clearly out of their inept parents' control.

Unless we're in law enforcement and the behavior is breaking a law, we don't have control over these people, their behaviors, or how they run their lives. All we can do is try to control our own comportment and that of our children. I'm a firm believer in not allowing my children to disrupt the peace of others in public. If they do, there are consequences, appropriate to the time, place, and age of my child. And my children know it.

They also know that I'm kind of a rules girl. I tend to think that many rules exist for the safety of others, for establishing equality, for ensuring the prevalence of the rule of law, for keeping people from killing each other, willfully or accidentally, for maintaining the peace. I tend to follow the rules because of my awareness of their importance. I don't skirt them for my own convenience or think, "well, that doesn't really apply to me because...(insert rationale here)." I follow them. Not blindly, but rationally and in the spirit in which most rules are intended. And my children know that, too.

As I sit there, being a rules girl, I've noticed the tremendous frequency with which the people around me do not follow the rules. Perhaps it's because we're a Honda family in a neighborhood of Lexi, Mercedes, and the Biggest Goddamned SUVs Amerka Can Make. Perhaps we're just the bourgeoisie implanted here like lowly weeds among all the beautiful, expensive hothouse flowers. Regardless of what underlies these differences, I've noticed a few things about the adult behavior around me. Many adults in my corner of the world seem to think that rules are for sissies, for wimps, for losers. And that's just the women.

They cut the car line at school. Not for special reasons, but every single day. You see, some of us just shouldn't have to wait in lines--we're just Too Important For That. They let their Humvee-dwarfing automobiles idle outside the daycare center for half hours at a time, directly funneling exhaust into the walkway leading to all of the classrooms. They talk on the phone in the car line, which happens to be against the law around here. They roll stop signs to cut people off, go 45 in a 30 in our neighborhood, and mercilessly tailgate anyone who has the temerity to go the speed limit. They're pushy, they're self entitled, they're obviously above the rules. And that's just their driving. Usually with children in the car. You should see them in the grocery store.

And as I watch this happen, daily, frequently, the same perpetrators over and over and over again, I think to myself, I'm not the only one who knows they're doing this. I'm not the only one who knows they're breaking the rules. Their children know it, too.

That's just my corner of the world. But I tell you what, as we say in Texas. I don't have to go far to figure out where the incivility and the bad attitudes come from--or where they're going.

He talked to a stranger

Our youngest son, Little, was essentially speechless until almost age 2. We put him in speech therapy at age 17 months after an evaluation with two very nice speech therapists yielded not one single utterance, interaction, or even notice of their presence in a room full of toys. Instead, he perseverated on a ball the entire time.

He's come a long way, talking volubly, accurately, and articulately about anything and everything, often making more sense than either of his brothers. Yet, he still suffers from a severe social anxiety that has him in meltdowns even in familiar places and will lead him literally to execute a 180 and run flailing in the other direction if a stranger approaches.

So, imagine my surprise when I took him to the doctor yesterday for his one-year kidney ultrasound, a follow-up to his bilateral reflux/bladder retention/narrow urethra/urethral flap issues he's had since birth. His kidneys look great, but the appointment was epic, as the ultrasound tech was waaaay behind. We were there for two hours, shuttled from waiting room to waiting room. And Little was a sport the entire time, playing with a blown-up blue exam glove, counting the fingers, accidentally flipping the bird on occasion by holding down the finger pairs on either side, leaving the middle in a single-finger salute. He was pretty entertaining all around.

And our pediatric urologist is a stranger to him, his previous specialist having flown the state for better, possibly more common-sensical climes. We don't know our new specialist from Adam--or Eve. But as she wrapped up the appointment with a "good-to-go, get a VCUG" goodbye, Little had something to say to her. "I'm going to have a pumpkin muffin after this," he announced to her, keenly aware of his excellent behavior and the promised reward. When she didn't seem to hear him, he said it again, louder. Sharing some personal information, a bit of excitement, voluntarily, with an almost complete stranger.

As I tweeted yesterday, I really did feel a bit light headed from giddiness. Not a single one of my children has ever done this. It takes prodding, reminders, peeling from underneath furniture, even to get them to exercise common courtesies to family members. Who is this Little of mine, and what did he do with my other Little?

And as we departed, I noted a small fact. During the exam, the doctor had identified a "lesion" on Little's little belly. It's a small area of fungal infection, one that'll clear up quickly with the Nystatin cream she prescribed. And it occurred to me: Using the rationale of some folks, I guess I oughta conclude that fungal infections improve my son's ability to interact typically.

Excuse me, please. I've gotta go find some doctor who will administer fungus to my children and "cure" them.

Should there ever be limits to inclusion?

Our school district is involved in a brewing brouhaha about segregation vs. inclusion for its special needs students. There may be a plan afoot to use a large, existing facility to develop a space for a small group of students in the district whose needs exceed the capacity of the home school to meet them. The district, of course, cannot and has no plans to round up all special ed students quarantine style and load them into a separate facility. This sort of facility would be specifically for families who face a difficult decision with which some readers of this blog may be familiar. Facilities like this certainly exist in many districts.

The ostensible proposal to develop this facility has led to some, shall we say, discussion. The arguing point involves an ideology that carries inclusion to an extreme that does not allow for the existence of any segregated facility. I cannot adhere to such an ideology for two reasons.

The first and most important is that I cannot speak for families who might actually need such a facility, for whose children 24-7 care is required, for whose children a facility offering a gamut of services in one place might be a godsend. I can only speak for myself. I would, in fact, never presume to speak for other families on something like this.

The second is that I clearly have taken one of my own special needs children to the opposite end of the inclusion spectrum, having withdrawn him from school completely. He is as segregated as a child can be, and he's never been happier, never done better academically, never made such huge strides as he has since we withdrew him from school. For him, inclusion was a long, unfolding disaster of proportions that are only now becoming clear.

I understand the idea of peer interaction and its relevance. But at a certain point for us, peer interaction became much more about pain than about positivity. And I think those of us who experienced inclusion all our lives can say with some certainty that even in the context of full inclusion, exclusion occurs. It is far more the social rule than the exception. In the school environment, by a certain age, like seeks like and excludes unlike, no matter how much the grownups force the twain to meet. In large, public school environments, this sort of self segregation is inevitable. It's why we pulled TH from school altogether and have him in the ultimate segregated environment of his own home. It was unquestionably the best decision for our child's well being.

That's not to say that I don't advocate for and believe in the power of inclusion. I've argued for it, I've posted about it, I've written about it. Its benefits, especially early on, can be powerful. But it's not my business, never has been, and never will be to tell or instruct or judge other families about what they need to do for their child, or what's right for them to do. Any ideology of mine has no place in the lives of other families making their own decisions about their child's placement. My reality and theirs are different.

I know that some readers here have had to make this decision, as well. I know that many of those same readers here are like me, believers in inclusion, fighting for it against people who want to restrain and seclude or force a child to wear a helmet, or lock a child away in a classroom away from the general population against parental wishes. And I'm curious about personal experiences one way or the other, about what your take is on the ideological underpinnings of inclusion. Is segregation ever acceptable?

Trollope on fruits

Intriguing title, yes? Well, slow down. It's really about a Victorian author and his comments on awkward, shy youth.

I was reading my Trollope last night--the odds are good for that on a given night--and came across the following passage in The Small House at Allington. Some people lovelovelove that book, but it's not one of my favorites. (That would be Can You Forgive Her? or The Way We Live Now). As with all things Trollope, I find myself recognizing us, the way we live now, in what he wrote then. Usually, the crossover involves politics. It probably won't make anyone feel better to know this, but Western politics and political behavior haven't changed a whole lot in the last couple of centuries, at least.

But last night, the subject was fruits. I suppose this was in a time before people used "fruit" in its current derisive connotation for gay men. I'm not sure, as I have not investigated the origination of this usage. In this case, however, Trollope is talking about young men he refers to as "hobbledehoys," awkward, ungainly youths without a way with women, shy, withdrawn. With true Trollopian humor, he also acknowledges the existence of women of a similar type, whom he refers to as "hobbledehoyas." This stuff kills me. Yes, I'm a member of the tribe.

Onward to the passage I found last night. From Trollope:

When I compare the hobbledehoy of one or two and twenty to some finished Apollo of the same age, I regard the former as unripe fruit, and the latter as fruit that is ripe. Then comes the question as to the two fruits. Which is the better fruit, that which ripens early...backed by the warmth of the southern wall; or the fruit of slower growth, as to which nature works without assistance, on which the sun operates in its own time--or perhaps never operates if some ungenial shade has been allowed to interpose itself? The world, no doubt, is in favour of the...southern wall. The fruit (arrives), certainly, and at an assured period. It is spotless, speckless, and of a certain quality by no means despicable. But, nevertheless, according to my thinking, the fullest flavour of the sun is given to that other fruit--is given in the sun's own good time.

Some of you may recognize what struck me in that passage. And I view it as my personal calling as a parent to avoid becoming an ungenial shade. To my mind, one of the best ways to do this is to give the sun its own good time.

A conversation worth hearing

I'm listening to it right now, and it won't be posted for awhile, but when it is, listen. It's an interview on KQED of three autism parents discussing My Baby Rides the Short Bus and their experiences at home and in society. Jennifer Byde Myers, Shannon Des Roches Rosa, and Sarah Talbot articulate what many of us parents feel. Worth listening to for many reasons, but...did anyone know that Squid was once a CHEERLEADER? And as Shannon points out, we all need our Jennifers, IRL and virtually.

Parenthood development

It's been said that autistic children are like other children in many ways, and they are. In fact, they're so much like other children that as with neurotypical young ones, autistic children don't stop developing. They simply develop at their own pace, one that tracks differently for different features. Did your autistic child walk late? Do they walk now? Did your autistic child have trouble with self care? Have they improved in this at all with age? Everyone is different.

Including parents. I, for example, will probably never master the art of wearing tight-fitting clothes. I hate 'em. I'll never enjoy rooms packed with people or get a zing of euphoria from being in a crowded, festive situation. And no matter how hard I try, the mysteries of sewing appear to be destined to remain a mystery. Developmentally, I don't think I fully mastered executive function-type stuff until I was about 30. Really.

And just like their children, parents of autistic children also seem to have developmental trajectories of their own related to autism. Take the Viking, for example. (Don't really take him--I need him). We're watching the new show "Parenthood." Because of the Asperger's storyline, people keep talking about it, family members keep asking us about it, so we have watched the first two episodes.

When TH was in the process of diagnosis (which took muuuuch longer than what they depict on that show), the Viking found the whole ordeal to be an experience of crushing anxiety. He willed the outcome not to be autism, but it was pretty much a foregone conclusion. He worried about TH's future--Would he work? Would he go to college? Would he find love? For many years, if I referred to TH as autistic, the Viking would demur.

Fast forward from 2005 to 2010. What a difference 5 years make. Now, the Viking speaks of our son's autism as naturally as he does of our son's blond hair or enormous feet. As the subject of Dubya has come up in the context of Asperger's, the Viking's reaction has been markedly different from our first go-round with testing and diagnosis. I listened to him last week calmly explaining to his mother what it might mean, what it might entail, using a language of support and acceptance of his son, with very little if any worry embedded in it.

And as we watched "Parenthood," he expressed concern that the trajectory of the Asperger's storyline might be one of cure or resistance or denial, rather than acceptance, one in which the parents fight the reality of it rather than simply working on it, head on. We know after almost nine years of living with autism that it takes a lot of work, day in and day out. Only yesterday as the Viking, TH, and I had a nice midday lunch at a restaurant, I had to remind TH every few minutes to keep his grimaces and vocalizations under control until we were in a more private place. It's work, sure. It's vigilance. But it's as much a part of our lives as soccer on Saturday is for some families.

We both accept that and scarcely register as a difference now. That's how much we've developed as autism parents. When our son was diagnosed with a developmental difference, it didn't mean he wouldn't develop at all. And it didn't mean that we wouldn't, either.

Lint in heaven

TH has an unwavering belief in heaven right now. It's not a doctrine we namecheck often, in part because we don't lie to our children about our own beliefs, and, well, let's just say that orthodoxy isn't really our strong suit. He's picked up on this comforting belief primarily on his own and at church, and he uses it in ways that people through millennia have done: to grapple with loss, to experience a hope of reunion.

Of course, most people think about reunion with other people, or possibly with a beloved pet. TH does think about a heaven with people. Just the other day, we were looking at a sad painting of a clearly starving mother with her wan-looking child, and he said, "They're in heaven now, aren't they? And doing fine?" He said similar things as he tried to wrap his mind around the devastation of the Haiti earthquake. And only yesterday, he expressed his certainty that when we were all dead, that's where we'd meet again. He's even given it as confirmed that our beloved Daisymayfattypants, the namesake of this blog, will be there to greet us, tail wagging away.

And we'd also, apparently, be meeting up there with our good friend, the lint ball.

No, not Lent. Lint. A ball of pocket lint that disastrously and permanently went astray almost a year ago.

In addition to pets and beloved family and friends, TH told me yesterday as we walked a local hike-and-bike trail that he's looking forward to heaven because he's pretty sure that lint ball he lost at Westcave Preserve on a class field trip will be there, waiting for him.

On Earth as it is in Heaven is TH's theology. And that includes lint balls. Which of us doesn't find our spiritual comfort in our own idiosyncratic way? Personally, I'm hoping for the Defending Your Life version, endless plates of pasta and all.

Riding the roller coaster again

Only last week, I was bragging on here about Little, the "gem" whose teachers luvluvluv him, whose interaction skills have made leaps and bounds in the last few months. I've done it before, gone to bursting with happiness over our own little social victories, whether it was our second-grade circle of friends triumph or a breakthrough when Dubya managed to survive singing two Christmas songs with the children's choir.

From what I can tell, every parent experiences highs like this, for different reasons, of course. Some parents get a thrill when their child makes the goal or hits the basket. Some celebrate perfect report cards or a well-executed sonata at the recital. I often feel like some of our victories right now are writ smaller, our little bit of ivory even tinier than the norm. In some ways, that makes things easier--we're not focused on how many three-point shots TH can make. We're watching to see how he manages a three-person interaction on the playground. Other parents probably scarcely pay attention to these types of successes--why would they? But to us, these victories loom large.

And on our small scale, with our tiny but soaring victories, little things that aren't so great loom large to us, too. Our roller coaster ride can be a jolting one, with a sort of parental euphoria at one moment, dropping to a stomach tightening depth the next. We find that the floor can drop out from under us whenever we step outside the family comfort zone, and we have come to expect it. What's surprised us these last couple of days is that the floor dropping comes in the middle of the comfort zone.

Sunday, church. TH had already caused some angst when, at drop off, he realized that on that day, they'd be doing charades. He gave me this particularly heartbreaking scrunchy fear face he does when waves of anxiety overwhelm him. I ushered him to a quiet place, and we had a discussion about bravery and facing that fear. He went in and faced up to Bible charades like the courageous little Viking that he is. I peeked in on him later, and he was in full participation mode, bless the child. A small victory, one that I hope will accumulate with other similar small victories and help assuage some of his severe social anxiety.

But then there was Little. We've been going to this church for two years, and Little has been there almost every Sunday with his "church ladies," who moon over him, give him treats, sing him songs, and let him play with all the fun toys in the room. But the last two Sundays, drop-off has not been a success. Last Sunday, they ultimately distracted him with a balloon. This Sunday...they retrieved me from the church service because Little was standing in a corner in the room, sobbing. So loudly, in fact, that I could hear him all over the Sunday School building as I walked toward his classroom.

He wanted to go home. He wanted his father. We sat together in an empty room while he continued to sob, huffing in that way that children do when they've cried helplessly for endless minutes. It took me a half hour to get him calm. Nice women who've known him for two years tried to talk to him, but he only cried more. He didn't want to be there. Full-on meltdown lasting for a half hour over a place he's been going regularly for two thirds of his life.

As I stood there in the hallway, holding my sobbing, socially phobic youngest son, I couldn't help it. Tears did come. To me. I don't actually cry a lot, but I couldn't help it. I think if we hadn't gotten that surprising and so-hopeful report about our gem last week, I wouldn't have felt so...worried and let down. Why was I standing here yet again holding yet another socially phobic, anxiety-ridden, sobbing, intractably melting-down child? Why, oh why are all of my children struggling so much with this?

Like I don't know the answer to that one.

After that helpless but brief pity party, I recovered, and recovered Little enough for him to participate with me in sticking poor tiny Zacchaeus up in a paper tree as part of an art project. A few leaf stickers and a happy face sticker later, and he seemed to be OK. That ride was over for the day.

And then, this morning, dropoff at his preschool, where he's been since he was one. We pulled up, and there were several people milling about, getting children out of cars, ducking the light rain that was falling. And out of nowhere, Little said, "I hate people. I don't like all these people."

Have I mentioned that I'm not such a big fan of roller coasters?

He is a gem

Yesterday, when I picked up Little from his school, he informed me on the way home in the car that he loves his teachers and that they love him. Cute, right, but I just took it as typical three-year-old talk.

Of course, around here "typical talk" of any kind is still considered a bit of a miracle and a breakthrough. I had marveled only the day before at Little's startling ability to tell a linear story of how a girl in his class coughed at lunch and then threw up all over the floor, and how he didn't step in it. He also included some fairly graphic comparisons that I won't share with you here. But anyway, I was impressed with his storytelling skills. His teachers have recently told me that he's made "huge" strides in so many ways.

So, when I dropped him off today, another child in the class was in mid-meltdown, and I observed to the teachers how really unusual it was to see that in that classroom. The teachers, whom we think are spectacular, told me that only a couple of kids really do melt down with any regularity. Our own history in mind, I asked, "Is Little one of them?"

And they said...be still my heart..."No. In fact, we were talking just yesterday about what an absolute gem he is. We fight over him. He's just the happiest child in this class--he gets grumpy every once in awhile, but that's it, and he never cries, and he never tries to play little mind games with us." Of course he doesn't do that last. When half your family is autistic, you don't really do the "mind game" thing much.

That description sounds a lot like TH to me, temperament wise, but here's the thing: We've never heard a single teacher tell us that about our other two children at that age. In fact, we didn't really hear such spontaneous enthusiasm about our sons until TH's second-grade teacher expressed how much she liked having him in her class, and one of his third-grade teachers said she'd love to have 100 of TH around because of his cheery behavior and his enthusiasm.

And we had a wonderful, special bible school teacher tell us last summer in the midst of a rather heartbreaking last-day "party" that she thought Dubya was one of those fascinating, special children who really grow up to do great things. It is such a pleasure to hear someone say something nice about our children, something that seemed to be sincere and spontaneous. Teachers, take note. It can be a balm to a parent's heart for you to say one small, kind thing about their child.

But Little is a gem now. A little three-year-old gem. Sigh. Smile. Yay.

Dear Neurologists

I've got some quibbles with you. I've seen four of you, referred every time by another one of you. You've given me four different diagnoses, only one of which actually makes any sense. In the process, one of you, at least, has suspected me of "magnifying symptoms," and I know why.

With one of you, I saw that I lost your serious consideration about two minutes into our consultation when I used the word "neurogenic." You stopped me--not the first time you interrupted what I was saying and not the last--to say, "You know, words are funny things." Funny thing, I'm not good at reading people in some situations, but in others, I'm spot on, and I read your mind at that moment. You thought that because I used the word "neurogenic," I'd been attending Google U. I'd been obsessively googling and Internetting, you determined, and that's how I learned that word. You decided, at that moment, that I was too wrapped up in my problems, and that decision colored the rest of the consult, including your limited and cursory neurological exam. In fact, you talked to my referring neuro and mentioned that you thought I'd been googling too much, learning too much, that it led me to "magnify" my symptoms. Given that your subjective findings were limited at best, a reflection of the depth of your exam, I'm not sure what exactly I could have magnified.

At any rate, you decided that because--as I could tell from your belatedly dictated notes--you didn't bother to examine much about my history (or about my spinal MRIs, while we're at it). I know what the word "neurogenic" means not because I attended Google U, but because I attended a real U, one that awarded me a doctorate in biological sciences. In addition--and this is a fun irony--I completed a postdoc at the same fabulous, top-ranked university where you did your residency. Yep. We went to the same school for our postdoctoral training, where we could both pick up big sciency words.

Oh, and I've written a biology book. And taught anatomy and physiology. And edit medical research papers, grants, and CME courses every single day of my life. Only three weeks ago, the irony gods sent me a review paper on cervical myelopathy to edit. Know what that means? It means I've read the latest review on that subject, and you haven't because it's not in print yet.

I could wax just as deep and technical about diabetes, colon cancer, or deep venous thrombosis as I can about spinal syndromes and myelopathies. And if you'd bothered to check my history, you'd've known that. But no. I lost you at "neurogenic" because a patient who uses a term like that is far too invested in their "issues" to be taken seriously. As a result, you reached a dangerously cavalier conclusion about my symptoms involving a serious surgery with a long-term recuperation period--one that, by the way, three neuorsurgeons have accurately dismissed--and you did it because you failed as a doctor. Was it because I'm female? Kinda young? Wearing too much black? Not you?

Other people have told me that neurologists are a breed unto themselves. And I happen to know dozens of patients whom you've collectively dismissed as somaticizing who later are diagnosed with very real, organic disorders. Several dozen, and I'm not exaggerating--or even magnifying--those numbers. When your errors of intuition are that endemic, there's something wrong with your profession's practice of medicine.

Here's the thing. I hate my appointments with you all, and I hate the mental and emotional sequelae, which last a couple of days. At every one, I know I'm going to hear something different, some different conclusion. At every one, I know the neurologist in front of me will fail to home in on the real, objective evidence--things I can't fake, no matter how often I use the word "neurogenic"--and wander around all kinds of dead-end pathways, always leaving me back in limbo land.

I'd rather live in limbo land, frankly, than have anything more to do with a doctor who ignores objective clinical findings and literally states that he thinks I google to much. It's not called google. It's called knowledge. And you're not the only one who has come by it via the traditional route, sir.

Yours truly,

Daisymayfattypants

Perspectives on parenting and autism

Another plug for Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum...I've got an excerpt up on the Gravity Website taken from my essay in the anthology and placed in the framework of the way we live now.

Be sure to check out this and the other posted excerpts and get your copy today! I've read the entire book, and every single contribution speaks to me.

Autism: the news media misinformation campaign

A new report out today states that a recent survey indicates that 1 in 4 parents thinks vaccines cause autism.

These parents didn't get this information from reading peer-reviewed journal studies (because obviously if they had done that, they'd know better). No. They got this "information" from headlines meant to lead to clicks (which lead to $$). They got this "information" from a news media that have dropped the skeptical ball in favor of kowtowing to the almighty dollar.

The news media also stumbled in the interests of appearing "balanced" over the last decade by mentioning vaccines in every single news story about autism until just about last year. They've wedged this idea into the public consciousness and continue to do so by having loudmouthed ignorant fools like Jenny McCarthy ramble and blather on Oprah, Larry King, in Time, and other outlets. Do they do it because Jenny's some kind of expert? No. They do it because she gets the clicks, the views, the money spent. Even an uninformed, damaging trainwreck with a degree from Google U can bring in the bucks as long as she's got some name recognition. Has celebrity ever been this dangerous before?

You'd think that after this debacle, after the retraction of the paper that seeded this public health disaster, after their insistence year after year, story after story, on including unsupported misinformation in headlines and articles, the news media types would've learned a lesson. But, no. Instead, we still have people like Nicholas Kristof going off on "toxins" (everything in the right dose is a toxin, and I'm sick of that word being misused in so many ways) being linked to autism--even though the very study he cites is simply a call for investigation of the possibility. His high profile op-ed in The New York Times came with its very own, highly clickable, sensationalist, virally potent headline, in the guise of a mere question: "Do Toxins Cause Autism"? Guess what anyone who reads that headline will instantly think?

In the interests of sensationalism, in the interests of the almighty dollar, they misled and continue to mislead the public and put children in danger. Whatever happened to journalistic skepticism? To investigative reporting? To journalistic integrity? I namechecked D.H. Lawrence's poem "Snake" in a recent post, and I'm going to do it again here: The news media have something to expiate here--a pettiness. And deeper, more damaging, and even deadly transgressions, as well.