Friday, April 29, 2011

When the Wig Falls Off

A city generally benefits from a few flamboyants and in this way, my hometown of Lenoir, NC, was especially fortunate. A city of only about 17,000, Lenoir made a welcome home to all sorts of eccentrics. A typical example was Sadie, a revered Southern lady who’s eyesight began failing long before anyone could summon the courage to suggest she stop driving. But we all recognized her car and so drivers simply pulled to the shoulder as she drove straight down the middle, on top of the yellow line. But of these many fantastic souls, there was one in particular who loomed especially large — Willard.

Seeing Willard was something. Something to talk about and most certainly to be remembered. When he showed up, he could be just about anything — a Convict, General Patton, Wonder Woman — and anywhere — atop a billboard with his red Superman Cape flapping in the wind or at the local movie theater disguised, just as ET on the screen, in a hooded parka and gloves, this despite the sweltering heat of a Southern summer. Willard was, as I heard it described so often, “Diff’rent.”

Willard’s mother used to make his costumes for him. These were wonderful and included crafty renditions of Elvis, Tarzan, an Indian Chief and more. He paraded them around town in a slow stroll along Harper Avenue or through the aisles of the local drug store. And there was a time he was married and his wife, right by his side, joined in, dressed for example as Tonto to his Lone Ranger. But even when he wasn’t in costume, Willard was a welcome site. When he showed up at the local pool, kids would swarm around him and he’d join in games of shark because he was so like a kid, too. I no longer live in Lenoir, but in the years since, I have been especially proud to know that I came from a city that most assuredly found a welcome place in the community for all sorts, Willard being the most extreme example of our open arms.

A few months ago, I posted a question about Willard on my Facebook page. It seemed obvious, from my friend’s responses, I’m not the only one with a fond memory of him. People replied with tales of their own Willard-sightings, added links to songs written about him and from those who still lived in or near Lenoir, came a few disappointing updates. Willard is 65 years old now. His wife hasn’t been seen for some time. I’m sure his mother passed away years ago and I’ve been told it shows in his costumes. They are not nearly as crafty and charming as the ones I remember. These days, he dresses mostly in bad drag with ripped fishnet hose and ratty wigs.

Willard made the local’s Facebook walls again this week. A high school classmate posted an article that reported Willard had been hit by a car on April 25. According to the WBTV story. “It is unclear what type of costume, if any, [Willard] Blevins was wearing when this latest incident occurred, but the highway patrol says he was wearing a wig which fell off after he was hit.” It’s an odd detail to include in such a report, but it says everything about the man’s character. I’m sure it frightened the driver who was found not at fault. Willard apparently stepped in front of her station wagon. It is truly unfortunate. Especially since this is not the first time he’s been in such an accident. And unfortunately, this incident left him with serious head trauma and he “was taken to Carolinas Medical Center in Charlotte where he was still listed in serious condition on Monday.”

I’m not certain what will happen to Willard. He no longer has any relatives to care for him. And let’s face it; in the late 1990s, he spent time in jail after being charged with indecent liberties with a minor. So he’s a man with a record now. That makes him much less endearing to the town.

I don’t have any photos of Willard, in his hey day or otherwise. I do have a photo my daughter insisted I take of her outside Central Park with some guy dressed as the Statue of Liberty that I took with my camera and still dropped the suggested $2.50 into his bucket for the privilege. Such street performers are in countless photo albums, not just mine, and they’re complete strangers. But I knew Willard. He has a much more vivid and dimensional place in my memory and I never paid him a dime. He never asked for money. He was not a street performer, just a small town crazy. All he seemed to want was our attention. I think there was a time we used to give him much more of it.

I sincerely hope Willard recovers. But if he does, what would he return home to? I’d hate to see Willard become a ward of the state, housed in an institution. Ideally, unrealistically perhaps, I’d like to think that once recovered, an aid might help him select a decent costume and assist him to safely stroll the sidewalks so he could receive a few welcome gawks but safely off the streets. And then maybe he could be Superman once again.

Silver Lining: I read a lot about autism, from books and blogs and opinion. It is an understatement to say that opinions vary. One of my personal litmus tests is to see if the belief, the recommendation, in question would pass the mustard from a perspective outside the spectrum. And so, I have to ask myself, do I really believe people need to understand and modify their expectations to allow for my son's odd behaviors? I set Willard up as an example to myself, of a clearly diagnosable child grown old. I of course have no insight as to what his diagnosis might be, but clearly he was odd. But, I believe, that he found "a welcome place in his community" made my community, in my eyes, a great place. But I believe things changed. And they changed, unfortunately, right when he lost the support of those who best understood him and worked hard to help him fit in. That community is a very different one today.

Could I imagine me, or my children, in his place? Yes. Who knows what direction my Little Boob Man might take if I am not there to suggest he control his impulses? If he continues to grab breasts ten years from now, he could very well be charged with "indecent liberties."

Ideally, I do think our communities have a moral obligation to support such innocent eccentrics, especially when their support systems die off. And not just to benefit the individual, but for the greater good. If offered continued support, perhaps such sad declines could be avoided. The hard part is how to recognize and act on it. And so I also posted this story on and hope to spread a little awareness for tolerance outside of the blue glow of autism

Monday, April 25, 2011

No-Surprise Birthday

Number 9 came as no surprise — which is exactly how C.S. likes it.

On any typical day, his anxiety can kick in pretty quickly but as he was looking forward to today, his birthday and this year, arriving close not only to spring break but also Easter celebrations, his anxiety was revving and grinding between nervous low and high gears. And so, l was impressed when last night he could tell us what he wanted most for his birthday — No Surprises. And so, together with us, he planned it. This morning, we began dutifully following his suggestions.

We did not wake him up. But once he was awake, I made his favorite birthday breakfast, banana pancakes (GF/CF of course).

We skipped early orchestra practice. After a week away, it was the first day back to school, and he just didn't want to rush his morning...and so we didn't. We allowed him to take the transition back to school as easily as he could.

We packed goodie bags to give to classmates as part of an in-class celebration, but my husband walked in with him to support him as he explained his "no-surpise birthday" wishes to the teacher. C.S. ran ahead and beat him to the conversation, he was that eager to have either the reassurances or dispense with the business — who knows, but he took care of it quickly.

I can only hope the rest is going well. The first day back from vacation can be hard for him. He doesn't fit comfortably into his routine any more it seems and after spending so much time with family, he misses us.

And of course, there was all that sugar this weekend. One of these holidays, I will follow through with my vow to ban all the candy once and for all. It just seems to make difficult days even harder for him. Easter Sunday was one of those. I don't know if it was the too-early-rise with morning expectations of his Easter basket, unexpected huge crowds at church (I should have thought to prepare him for that, oops) or the sugar that over-shadowed his healthy breakfast or who knows what ... but Easter Sunday was a very Autie-day for us. That's another story, for another blog post I suppose.

I've been away from the blog for a while, but I'm back now with a week full of events to process, silver linings to collect and moments to inspect — still my first order of business on this Monday is to un-surprise my sweet C.S., for his special day, his 9th birthday.

Silver Lining: I celebrate my son everyday, but especially today. And honestly, despite the trials with extreme GI intolerances, sensory, auditory processing and all-round autism disorders, I wouldn't change a thing. He has taught me so much. He has lead me into new territory and to new understanding. Nine years ago, on that day I can so vividly recall, it was something I never expected from my infant son — that from that day forward it would be he that would be the teacher. But now that he is 9, it is time to stop being surprised by this unexpected role reversal and just do what I can to help him understand what, from my experience, he might expect.

Sunday, April 10, 2011

Apples don't fall far...

C.S. looks a lot like me. He has my brown hair, freckles, big eyes and, in general, a spitting-image arrangement of facial features.

Somehow, we parents are compelled to trace and even claim family traits in our children. It can be a source of pride. I can’t tell you how pleased my husband, an architect, was when he recognized that our son explored the volume of every building we entered, even at the tender age of 3. We weren’t surprised when the neuro-psych testing conducted years later confirmed that he had superior spatial reasoning. OK, so it was bundled inside a autism diagnosis, but this particular sort of exceptionality was something we had wished for in our children. There were advantages.

Of course, there were disadvantages too, and it was these that lead us to the testing to begin with. And here’s where laying claim to my child's traits can be a source of constant worry. Perhaps it is just the intensity of my focus on the subject or a mother’s guilt, but I swear I am recognizing the PDD-NOS, not only in him, but also in me.

I can be quite literal. I obsess on subjects of interest to me. I can recall conversations verbatim and at one time had the habit of replaying them to myself over and over again, even those that were mundane, trying to understand the nuances I either missed or over-focused upon, because I can be prone to that, too. And as for sensitivities to fabrics and tags, well, I’ve had that, but don’t we all? Don’t we?

I’m drifting dangerously close into a now notorious autism debate — whether it is caused by genetic or some environmental factor (vaccines for instance). Normally, I'd keep my distance. However, this week, I’m feeling a little more PDD than usual, perhaps because I recently made a huge upgrade in my computer equipment and software. I’ve been geeking-out exploring the latest features of Adobe Photoshop and am just amazed by how far it’s capabilities have come since I first studied design and printing. As a college freshman, I learned traditional graphic arts photography and typesetting skills — deep in the darkroom ages of the trade. The Apple Macintosh was introduced a few years later and I’ve been chasing technology ever since. Although I chose to major in design because I was attracted to the hands-on creativity, it's been the geek in me that has helped me continue and survive in this career.

To give you an idea what a autie-like creature I can be — and stick with me because I will relate this back in just a second — when I was pregnant with my first child, my daughter, I obsessed with the typical reading list; What to Expect When You’re Expecting, etc. But then I moved onto a book that truly fascinated and engaged me for the full 9 months of reading and, unlike the others, has ever since, Mother Nature, A History of Mothers, Infants, and Natural Selection by Sarah Blaffer Hrdy. I’ve thought about it a great deal lately, especially as I’ve tried to comprehend my son’s autism. Perhaps it is my search for a silver lining that has lead me to wonder if it’s not a genealogical or environmental cause but is instead a matter of phenotype. In other words, what if autism is natural selection at work?

Acording to a 2009 article on CBS, 1 out of every 100 children are diagnosed with ASD. That’s huge. Granted, there are portions of the spectrum that can be debilitating and complicate my argument that ASD is an evolutionary advantage, but when I look at my son with PDD-NOS, I can’t help but realize how perfectly suited he is to a world saturated with graphic interfaces and sensor technology.

Perhaps this is why I returned to Hrdy’s book as I struggled to understand my role in my son’s autism diagnosis — was I the cause (did he get it from me?) or the mothering "cure" (we follow a GF/CF diet)? Among the many fascinating facts about motherhood to be newly appreciated in her book, today I think I found the one that I must have been searching for all along, the statement that sort of let’s me off the hook (on page 56):
The important point here is that all anyone ever sees, touches, or directly experiences is phenotypes, never genes. It is phenotypes that interface with the world and interact with others in it. Only phenotypes are directly exposed to natural selection. This is why, evolutionarily speaking, and especially for those like me who study behavior, phenotypes are what matters.

Of course, it was easy to convince me, an identical twin, that it takes much more than genes to develop an individual set of characteristics. And while, I'm not quite off the hook entirely (genes and parenting are involved in developing phenotypes) somehow, that there are traits deeply embedded in his genetic code, in mine even, that have simply "switched on" in response to the environmental context in a way that is typical of our highly adaptable species, is a much more palatable point of view for me. This example of phenotypes and morphs and much more about her almost purely scientific, mother-focused but not autism-specific book was hugely comforting to me.

Silver Lining: I am far from a scientist. Hrdy’s book was then, and still is, a bit over my head. But I turned to it all the same because raising a child with autism put me in the deep end treading water anyway. Just as I’ve had to keep teaching myself the latest version of the same software program for the past 20 years, it's what I've had to do to survive.

I initially returned to Hrdy's book to look up a species of caterpillar that, depending upon its diet alone, could develop into utterly different looking organisms. I had been wondering, worrying, could it be as simple as something I ate, as diet? And if it was not the milk I drank or the vaccines I gave him, then what about, as a freelance designer, my daily and relatively solitary immersion into technology? Could I give it to him in this way?

Who knows if there's an autism-related answer there. But I'm glad I rediscovered her book now because in example after example she returns to a sole premise; of all the many magically varied forms and twists natural organisms and our biology finds in existence, they do so with singular purpose — to survive.

There is comfort in that to me. After all, when I look to the future, I imagine technology advancing at an even faster pace in a world full of social interactions that are (omg) wildly different than what I’ve experienced. And in this world, I can imagine a place for my son, a place where, eventually, he’ll succeed beautifully.

"Mother Nature: A History of Mothers, Infants, and Natural Selection" by Sarah Blaffer Hrdy, Pantheon Books, New York

Tuesday, April 5, 2011

Little Boob Man

The robin’s red breast isn’t the only one that’s shows itself in spring. With the warm weather, or even just the tantalizing hint of it, everyone is enticed to shed bulky sweaters and wear lighter clothes with open necklines that of course leaves women’s cleavage exposed. And this is more than my 8-year-old son can resist.

He is a certified boob-man. I’d be horrified of course to hear my 3rd grader described this way if I did not completely understand how his desire to grope is just another behavior tied to his autism-related sensitivities. He is a sensory seeking little guy. He always has been. And one of his first comforts in this world was to be held tight against me; my arms wrapped around his back as he pressed his little head up hard beneath my chin, dug his feet into my thighs and deep pressure held his body against my chest — night after night, this seemed the only way I could coax my baby to sleep. From the very beginning, comforting him has been an exhaustingly physical experience.

But as he grew older, the comfort he found by diving beneath my shirt into the warm, fleshy places on my body, preferably between my breasts, was becoming, problematic. He seemed to be constantly fighting for first base whether at home or in public. It was something he’d simply have to learn to resist.

He learned. Each year, we continually offered either appropriate substitutes or social boundaries. We gave him handfuls of Play-Doh and squishy balls to squeeze to his hearts content. When his hugs became too long and uncomfortably physical, we limited the length of time he would be allowed to hold an embrace. When his hugs became too frequent and excessive, we then explained he would be limited to only three hugs from non-family members a day. All these lessons were intended not to entirely squelch his sensory needs, but to help him understand that he must find a way to satisfy them in socially appropriate ways. After all, a toddler may be able to get away with a clumsy hug that finds his hands in surprising places or his head in motorboat position, but at age eight, soon to be nine, if allowed to continue, the boy might very well get slapped one day. He had become quite stealth about it, but he was that egregious.

And he’s been doing great. He really has. But in the past few weeks, I’ve been reminded how hard he works every day to control these impulses of his. And with the coming of Spring, he’s been hugging more, with such tight exuberance, as his Mom, its hard to resist it myself, but then on Friday, he did it ... I saw him openly grope a friend's irresistible Double-D’s.

“I’m so sorry!” I pleaded as embarrassed as ever, and then with as much calm as I could muster, I turned to C.S., “Outside in the hall now, Bud. We need to talk.”

It was a lesson for me. I could now so plainly see that although he gains control over his sensory issues, it is not something 2mgs of medication, social skills classes or therapies will “cure.” These many impulses, to flap his hands, to run and hide and even to dig his hands deep into warm, motherly flesh, are always with him.

Silver Lining: I get deep, amazing hugs from my C.S. To him, I promise, hugs with me are absolutely without time or number limits. And I am glad to think hugs are something my child will never outgrow, never resist, something I can count on receiving enthusiastically with every daily greeting. Oh, but I do worry as we enter the tweens and teens...

Friday, April 1, 2011

Lighting Up with Good News!

I'm celebrating awareness today!! And not just by lighting up my house tonight in blue to provoke friends and neighbors to ask me about autism, but also because our process with the school has shifted noticeably from adversarial to collaborative!

It really does work to follow the steps. Even though they pushed us into a PPT and hence a legal direction, we would not be intimidated. We held our ground. We never stopped insisting that those who can, please listen and try to understand our children. If it's your field, if you're their teacher, the school social worker or principal, I will expect you to help them. I will hold you to those expectations somehow. And we used the legal proceedings to our advantage.

But enough with that, I want to stick with this glowing silver lining which was a team meeting to discuss DeDe. This meeting was not a face off, but was full of ears, open minds, warm souls and discussions with all parties weighing in. It was wonderful. It felt like progress. And it was perfectly appropriate to her needs. We love how independent and resilient she is, but considering the social concerns we're seeing, we needed to know, as my husband said, that someone has her back at school. And now we feel like they do.

Silver Lining: The month of distress was worth it.

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