Heigh ho, Silver

Before we proceed, gallop, don't walk to this story, take some anti-nausea meds and give it a read, if you haven't already:

"A Gallop Toward Hope: One Family’s Adventure in Fighting Autism" http://www.nytimes.com/2009/04/15/books/15horse.html

Okay...

Those of you who know me know that I tend toward the cynical side of "magical" cures, and not without reason. We've been to our share of "healers," albeit not shamans, I'll grant you that.

There are quite a few things about this story that get my gorge rising. My own little pet dream is to collect some of my writings (and that collection grows daily) into a book about our life - isolation brought on by several factors, not the least being autism. I know that I'm looking at a struggle to even get something published. This man, Mr. Isaacson, got one million dollars...BEFORE HE WROTE A WORD. So maybe he has an established history as a travel writer. Okay, he gets points for that. But in the publisher's (Michael Pietsch) own words:

“It just touched so many points of interest — helping to heal an autistic child, traveling under difficult circumstances...Most of all, I felt this was a story entirely driven by the chances you’ll take for love, and I felt, who’s not going to want to read this story when they hear the outlines of it?”

Well, I can think of one or two people...

Reading this story reminded me of an entry I did last year about the surfing camps for kids with autism. I'll repeat a sentiment I hope I established back then: I am NOT saying that kids with autism shouldn't or can't do anything they want. I'm also not saying that riding horses or surfboards or carnival rides might not improve their behaviors temporarily. What I AM saying is that this does not a cure make.

Mr. Pietsch, right up there in his quote, says "helping to heal..." How many families are, right this minute, Googling "horseback riding/shaman appointments in Mongolia"? I'm really not joking. Some parents are THAT desperate. And again...with very, very good reason.

Another quote: “'The Horse Boy' traces Rowan’s early difficulties with 'demonic' tantrums, speech delays and incontinence. The only thing that seemed to help, Mr. Isaacson discovered, was riding horses. On horseback Rowan was calm, gave verbal directives and expressed joy."

Okay, on horseback he was calm, he spoke some, and was happy. That's fantastic. Did he suddenly ask for a port-a-potty to be strapped on to the horse? Stephen is calm when he's in Wal-Mart, clutching a new DVD, and he expresses joy when he gets to watch it. Have I hit upon a cure? Or, perhaps, our magical cure is found tucked between the golden arches - he's calm, verbal, and joyful there. A friend on FB suggested that maybe the McDonalds corporation would like to give me a million dollars to write about our life, including plenty of product placement...

The Little, Brown Company gave Mr. Isaacson a cool mil to head off on this adventure. Is there even a slight possibility some extra excitement was thrown in? A few "strategic" photos snapped? After all, you have to give the reader what they want, and they want real life DRAMA. The endless supply of reality TV shows gives a good bit of credence to that fact. Again, from Mr. Pietsch:

"Our usual response is, ‘Go have the adventure, and then we’ll decide'...[but]...regardless of the outcome in Mongolia, we thought he would write a very moving and interesting and dramatic book.”

I suppose it appears that I'm questioning Mr. Isaacson's integrity, and I guess I am in a way, but how much pressure was he under when the publisher expects a "moving and interesting and dramatic" book? There's no way to predict that an severely autistic child would have a marvelous adventure flying to Mongolia to have strange experiences. Is it possible? Sure. Best-seller material? Apparently. A cure? No way.

Mr. Isaacson says that if someone had written a book like this when his son was first diagnosed, he would've been reassured - that he would've liked to know that a family with an autistic child could still have "adventures." Good god, isn't life with a kid like this terrifyingly adventurous enough for someone? It is for me. I long for peace and quiet and calm. But that's just me.

I'm not the only skeptical party here - right in the article a mother reacts to Isaacson's careful avoidance of the word "cure," substituting "recovery" and "healing," which, of course, mean TOTALLY different things altogether. The mom says that it's hard to know if the trip, the horses, and the shamans were the reasons, or if his improvement could be attributed to natural progression (which DOES happen). She also said, "To make this story more engaging, it has to be portrayed as something miraculous and fantastical, because ordinary, everyday, slow-plodding progress does not read so well..." She's right...or is she?

I'm writing about our everyday, ordinary struggles, and many of you seem to appreciate that fact. This, the blog where I put my thoughts, fears, hopes, and, yes, Stephen's progress, is REAL. There's no magic here. I want to share our story...but there is no sunshine being blown up anyone's...skirt...here.

Mr. Isaacson is also very careful to say that this was merely what worked for HIS son, and his family. "You don’t have to get on a plane and go to Mongolia. It’s just that our particular story was that." Yes, indeed. But there are still families cashing in 401K's (well, if there's any money left in them) so that they can retrace this journey, so they, too, can gallop toward hope. More snake oil is being sold here...the false hope that is so rampant and which I've touched upon when mentioning the book by Paul Offit. The publishers are marketing this book like crazy - a book tour and all the trimmings. The brochure describes the book in a way that will appeal to a broader group - "the adventure and optimism of ‘Three Cups of Tea’ with the powerful connection between man and animal that readers loved in ‘Marley and Me.’ "

Marley and Me? I actually chuckled out loud at the mention of that oh-so-precious story about that loveable scamp, Marley - it is such an obvious tie-in to this topic.

One bookseller was sold after seeing the cover which is reportedly a "triumphant" picture of Rowan on horseback on the Mongolian steppe. I mean, what's not to like, she wonders: "It’s inspiring and uplifting and it’s about horses." A formula for success!

I dream of finding a way to tell this story of my heart, which sometimes pours forth in gentle streams but more often in painful explosions. And it'll be realistic and down-to-earth and about a little boy and his family. If you want to read about horses, pick up Black Beauty.

The 4'10" Tyrant

This is the worst time to try to sit at the computer and write but I fear a complete collapse is imminent if I don't write, in between cleaning off DVDs, pushing on Stephen's head, and trying to figure out what in the hell I'm supposed to do with him all day.

It's only 8:53 a.m. and I already feel like I've descended into the fifth circle of hell.

I don't know WHAT is going on with this kid, but he is impossible 99% of the time lately. He used to be content with playing and watching videos and looking at books and playing with stuffed animals, and now he is a malcontent.

I am so angry.

I am so sick of not only trying to keep him calm in the evenings, but for 48 hours (well, minus sleep time) every weekend. On top of worrying about him, I worry about how upset he's making David and Kerry, and right now it's more than I can stand. Every whiny cry, every groan, every footstomping fit makes my nerves jangle into a mass. Sparks fly out at intervals and I feel like my brain is short-circuiting. But it can't because somehow I have to figure this out.

I can't find time to work on his schedule because if I pull out the materials Stephen will start picking out every location in the pictures and wanting to go there.

I hate this so much.

Just now: "Heh-shoos."

Me: "Later."

"Friesburgerdonaldshungry." It's 8:59 a.m.

"Later."

I am lost. I am so damned tired of carrying all this around, and trying to find solutions where none seem to exist.

David said last night, "How are we supposed to live this way, day after day?" I have no answers. I only know that every choice seems impossible. So if A + B = impossible, and B + C = impossible, and every other equation yields the same - then what? Picture my head flying apart like a clock that's been wound too tightly... *SPROINGGGGG*

And now, a mere TWO MINUTES after his demands, Stephen grabbed a book and happily trotted off to his room, as if nothing is amiss. I hear his delighted coos as he "reads."

But see, that's the thing. How long will it last? We all sit on high alert, not even able to find peace in the milliseconds in which it occurs. Exhaustion doesn't even begin to cover it.

I have people who have offered to talk about this, and I intend to try to take them up on their offers to listen...but right now, it's all just too much.

David's playing music now...Coldplay, "Lost." How appropo. A snippet of lyrics, "You'll be lost...every river that you try to cross....Every door you ever tried was locked." I'm in a circular room, the walls filled with doors. Each door is labeled. "Calm." "Peace." "Happiness." "Contentment." "Normalcy." "Fun." And they mock me with their gigantic, cartoonish padlocks and miles of chains holding them closed.

My brain is overrun with picture symbols as I try to figure out how to plot Stephen's life on paper, then laminate it and velcro it to a board. Will it all be for nothing? How do I use cute pictures to teach him that some DVDs will skip straight to the menu if you press that button, and some won't? Ha. And that's just one of the things that sets him off. How do I teach him with squares on a board that you don't get McDonalds at 8:00 a.m. on a Saturday? So perhaps you see the dilemmas I'm dealing with here...

Well, my breathing has returned to normal after two episodes of feeling my chest compressed like someone's sitting on it. The pain that is physical-yet-emotional has subsided, and Stephen is laughing in his room. I will mentally put one foot in front of the other. That's as adventurous as I can manage right now.

He's back at his DVD player. I cleaned the filthy disc with the bottom of my t-shirt, and we'll see if this disc works in a way that suits His Majesty, who rules with the cutest little iron fist you've ever seen. We, his jesters, his chefs, his royal guard, and I suppose I'm also his lady-in-waiting or something, will hope that things today can somehow suit His Highness and his hair-trigger temperament.

We cower and await his instructions.

Man, do I have hissues

Nope, not a typo. I have hissues. Or possibly heh-shoos.

It's not often that I roll out posts a day apart, but since the inside of my head has been upgraded (downgraded?) from a tumbling clothes dryer to a category 4 hurricane, I figured I'd best get myself back here and let it go.

Yesterday, as you recall, I noted my envy of the Ramblin' Man with a bit of wry amusement. Today on the way to work David and I were behind a truck pulling a rather large fishing vessel bearing the charming moniker "Happy Hooker." The "h" in Hooker looked like a fishing rod and reel and isn't THAT just the cleverest? "Come on, guys! Everyone jump on the Happy Hooker and let's par-tay!" Imagine the awkwardness that could bring on at garden parties.

But I digress. I stared at that stupid boat with it's stupid name, and I felt the old familiar bile starting to simmer. Whoever owns that boat must die a painful death, and as soon as possible. I looked to my right...there's a young lady be-bopping to some shitty hip-hop music, no doubt, while she puts on her lipgloss. I hated her immediately. Just ahead and in the right lane there was a woman driving a small gray car bearing a bumper sticker that David noticed just as I did: "Don't let the car fool you. My treasure is in heaven." Well, isn't that just fantastically wonderful and amazing. Forty lashes for you, missy.

Nobody gets to be happy. I don't care if Billy Joe worked hard to buy that damned boat. I don't care that the young lady can listen to her music and put on her lipgloss because it's a free country. I don't care that Ms. Gray Car is at peace and content with her treasure in a heavenly safe deposit box. I look at everyone through my own selfish filter, and I hate people going about their lives, DARING to be at ease, happy, and relaxed. I don't want to hear that other people have it worse than me. (Oh, I know that, but right now I don't want to hear it.) Don't tell me that everybody has issues. (Of course they do.) But I have HISSUES, and those are so much worse.

I mentioned this briefly yesterday, but the saga continues. Roughly a week or so ago, Stephen starting asking for "heh-shoos." We have tried everything. I thought it was Harold-shoes - "let's go buy the Harold DVD." We tested that last night. Nope. We have tried, "All done shoes." "We're home." Nope - doesn't even faze him. When he finally went to sleep last night, I breathed a sigh of relief because 1) I needed a break from all my hissues, and 2) I needed to work on schedules and PECS and stuff. I went to bed exhausted.

This morning Stephen was up before 6:00. I was already up and we got the lights on. He popped in a DVD, and I started getting things ready for the day. He was lulling me into a false sense of security. I sat down on the couch to turn on the TV, and he plopped down in the recliner beside me.

"Heh-shoos."

Great God in heaven...WHAT IS HE SAYING? I said, "I don't know."

"HEH-SHOOS. Heh-shoos. Heh-shoos!"

With weariness oozing out of every pore I said, "We'll put on shoes in a little bit and go to school."

"NO NO NO...no no no...."

See...I'm not GETTING it, and he knows I'm not getting it. He seems to say this only when I'm around.

"Heh-shoos. Heh-shoos...heh-shoos," like a little rapid-fire machine gun. I stood there dumbly, sort of mumbling, "I don't know. Shoes in a little bit....I don't KNOW what you're saying. Show me. Hissues...I don't know..."

And the crying began...rocking in the recliner almost violently, demanding that I "Push, please" on his feet.

David got up, and got Stephen calmed down (thank you) and he finally went back to his DVDs. Kerry got up, ate breakfast and got ready for choir. David and Kerry left and I went to the bathroom to get ready. As I walked into the room, a boulder landed on my back. I sank to my knees on the bathmat.

I didn't even realize I was crying until I noticed the wet spots forming on the bathmat - dark green spots on a mossy green background. In a strangely disconnected way I found myself noticing wonderingly that the tears seemed to fall in the same spots each time. "So they follow a path down my nose and drop down on those same two spots on the rug..." Jeez...how many times can my thoughts divide themselves before all the king's horses and all the king's men can't put them back together?

This "simple" conundrum - trying to figure out this tiny little two-syllable phrase - bores into my consciousness, piercing into the very soul of the matter like some gazillion watt searchlight. My child is trying to talk to me, and I can't understand him. He's not a little baby who can be coddled and cajoled with a cute rattle, yet he IS a litttle baby who can't tell me what he wants. I can't tell him no or yes or later because I have no idea what he's asking.

It's the perfect illustration. It is the whole sum of it all. My child might as well have been dropped off on my doorstep by someone from another galaxy, or, even better...we were picked up and taken to his planet. He speaks a language all his own, and my translator is broken. I don't know what goes on inside his head, or what pains he feels. He may be asking for the simplest thing in the world, and all my prattling on about shoes is driving him as mad as it's driving me. Someday I hope to look back on this and laugh. Yeah.

Ironically I got an email digest from an autism group I joined on Yahoo, and it contained the heartwarming "Trip to Holland" story that I used to hold so near and dear (http://www.our-kids.org/Archives/Holland.html), back in the early days of autism when Stephen was 2 and life seemed manageable. We might've started out in Holland, but our itinerary moved on to other foreign and bewildering places around the globe, and now we live on Omicron Persei 8, and I hate it here.

So, baby boy, you're right. Boy, does your mama have hissues.

Ramblin' Man

This is going to be short and I wish it could be longer, but I am swamped at work and can't just jump into the zone and let it all come rushing out.

However...I needed just a minute to get some thoughts out, and this seems as good a place as any.

This morning as I waited at a traffic light to get on the interstate, I saw a homeless man walking down the exit ramp, a bag slung over each shoulder. He moved slowly through the cool morning air, paying close attention to the construction going on at this particular part of the interstate. He was dressed fairly neatly, with a rather jaunty fedora-style hat perched on his head, and he looked pretty clean. (Either this traffic light is very long, or I have really developed my powers of observation, no?)

My stream of consciousness, transcribed as accurately as possible: "Poor guy...wandering along. Wonder if he used to work construction, he seems interested in this stuff...walking through all that mud. Yuck. He's ambling - not often you see someone just amble along. He has no place in particular to go today. Maybe he's mentally counting his money to see if he can spring for an Egg McMuffin. He can do whatever he wants today. Nobody's waiting for him. Nobody can really tell him what to do or where to go..."

You know, you really should start to question your sanity when your compassion for a homeless man morphs into some bizarre kind of envy.

I'm being extreme (of COURSE) but there was definitely a part of me that envied the homeless guy. Of course I value my roof, food, warmth, and family. But I get so TIRED of planning, planning, planning - and still I live in a symphony of confusion and tension. At Stephen's recent IEP meeting, we got a lot of encouraging information for which I am very grateful - it sort of softens the blow from last week's results - but I also realized that we have got to micromanage his life even more...get more schedules going for home, for going out on errands, for understanding that he can't pitch a fit every day when I come home from work. My feet feel leaden walking up the stairs every day, wondering when the endless cacophony of "open?!!? friesburgerdonaldshungry???!!! heh-shoes (I'm clueless about that one)" will begin.

There is much more to say but the paperwork is piling up on my desk. I did catch the newest "Jenny McCarthy and her entourage on Larry King" episode Friday night. Don't even get me started.

But maybe this little entry will help me get through the day, and keep me focused on what I CAN control (which seems precious little). More schedules, more pictures, more social stories...a lot of work for a little boy who runs the show, in hopes that in ordering his life more precisely, the other three of us might find a life underneath all the clutter and noise and stress. We've been told that Stephen shouldn't be allowed to "run" our lives, which in theory makes perfect sense. "Easier said than done" would be my oh-so-original retort to THAT jewel.

For now, I'll put away my thoughts of walking off into the sunset, and banish the loop of "Ramblin' Man" that's been cycling through my head. But here's a promise: the next time I get the urge to tie my belongings up in a bandanna on the end of a stick, I'll be back.