Thursday, September 25, 2008

Responding to Autism

Recently, I came across a discussion on an internet forum that got me thinking. Yes, yes, I know “thinking” is dangerous, but I like living on the edge. I have thrill issues.

This particular forum is for parents of children with autism, and the discussion thread that got me thinking was titled “To Tell or Not to Tell.” The person who initiated this thread was curious to know how other parents decided to tell or not tell friends, family, schools, and strangers about their children’s autism.

To tell or not to tell isn’t a choice for many families with disabled children because the disabilities are obvious even to the casual observer. Autism, however, isn’t always obvious. Metaphorically speaking, it’s a big, shadowy, amorphous blob with fuzzy margins and no clear-cut features to define it. Medically speaking, it is a neuro-developmental disorder that involves social developmental delays; a huge variety of speech and communication problems; and stereotypical behaviors that are repetitive, routine, or ritual in nature, and interfere with daily life. (Did you get all that? That’s okay. No one else does either, not even the experts.)

Developmental pediatricians and child psychologists may know immediately that something isn’t right with a particular child, but they spend years studying what to look for and order multiple evaluations by lots of different specialists before they will diagnose autism. Grandma, Aunt Marge, Neighbor Bill, and Stranger at the Grocery Store, however, may not notice anything out of the ordinary.

So…“To tell or not to tell?”

When we began the process of getting Jack diagnosed, we sent out a mass email to friends and family asking for prayers and support. From our point of view, how could we NOT include our family and friends in something so huge? George and I are WYSIWYG: what you see is what you get. To us, not dealing openly with this implies we are somehow ashamed of Jack. Nothing could be further from the truth. We love him and think he’s wonderful no matter what label is affixed to his medical or school record. If the label gets him the help he needs, it serves a fine purpose as far as we’re concerned.

But there are two sides to telling: someone does the telling, and the people who are told do the reacting. Sadly, many parents of children with autism have to deal with unpleasant reactions. They hear comments like, “There’s nothing wrong with him that a good spanking wouldn’t cure.” Or, “You’re over-reacting. He’s fine.” Or, “If you just do this, he’ll be normal.” It is sad how many parents hear these things from the very people whose support they desperately need: family and friends. These reactions make it very easy to understand why parents might decide not to tell.

Over two years ago, when we started this journey with Jack, most everyone we told trusted our judgment and offered up love, support, and prayers. But one person boldly declared to me, “There’s nothing wrong with this kid, and he certainly doesn’t have autism!”

What are you supposed to say to a comment like this?

I had no idea, so I said something vague and noncommittal. I wasn’t angry about the comment, just taken aback. I understand people honestly don’t know what to say in situations like this, and denial may seem a reasonable, compassionate response. People say unhelpful things, but rarely do they intend to be mean or rude or insulting. He certainly didn’t, and I knew that. It would have been out of character for him.

Nevertheless, many other parents are highly insulted and hurt by these sorts of comments and vent angrily on the forum. One woman’s sister, who has no children but raises dogs, told her that she just needed to discipline her autistic son more so he wouldn’t be such a disruption at family functions. The offended mother asked on the forum, “What am I supposed to do? Put a choke chain on him? Smack him on the nose?” Such an angry reaction is perfectly natural, largely because these parents are grappling with something that is huge and scary and life-altering. They do not need criticism or advice, just hugs and support.

People who have never experienced this and know little about autism (or worse, have seen the movie Rain Man and think they know everything about it) just can’t understand. When you bring a child into this world, you generally assume he or she will be “normal,” however you define that word. When you find out this isn’t the case, that your child has a brain disorder for which there is no cure…, well, let’s just say it’s a shock. In this state, parents can become emotionally fragile, even more sensitive than they might usually be. When someone questions their judgment, which is based on professional medical evaluation, they can easily get defensive and flip out.

You can’t really blame them, can you?

Jack’s official diagnosis was Pervasive Developmental Disorder—Not Otherwise Specified, mildly affected—or atypical autism. Most people who meet Jack casually don’t see any problem at all, but he has significant delays in social development and speech, along with sensory problems and delays in gross and fine motor development which sometimes accompany autism. Unlike more severely affected children, he has good expressive language, is empathetic and can read facial expressions, and is easily redirected most of the time. He made so much progress socially in the last eight months that his developmental pediatrician got choked up at his last check-up. Sadly, developmental pediatricians don't always see that kind of dramatic improvement in their autistic patients.

Jack is so blessed. His brain is working hard to rewire itself to function more normally. Not all kids with autism have brains that can do this. Jack’s progress, however, is a direct result of his own hard work as well as the dedication of half-a-dozen therapists and doctors who provide expert treatment; wonderful teachers and aides at two different schools who respect him and cheer for him and make him work; a church, family, and friends who accept and love him; and parents and a brother who pay attention to him and heap love on him daily.

Last year Jack’s teacher asked him, “What is the best thing about being Jack?”

He replied, “Love.”

Think about that for a minute. All these people pulling for Jack have surrounded him for over two years with their love and prayers, and even at the age of five, he knew it. Would our church, Jack’s typical preschool, friends, and family have done this if we didn’t tell them about his challenge in the first place? Would they just think he was a disrespectful little kid who ignored them and refused to look them in the eye? Would they get angry when he wasn’t paying attention to them or when he wandered away while they were talking to him? Would they think he was weird when he started acting out Blue’s Clues dialogue with his reflection in a glass door? Would they understand?

One day about a year after the diagnosis, Jack had a substitute gymnastics teacher, and I decided to conduct an experiment: I didn’t tell her. After class she informed me she had to hold Jack out because he wouldn’t listen. It was obvious by her tone she thought he was a brat. So I told her. She must have thought I was nuts because I smiled benignly the whole time she chewed me out. I deserved a chewing-out for setting her up like that, but I had to test my theory in a safe environment and she gave me that. Sure enough, when she taught him in later classes, she was patience personified.

I’m telling. It works for us.

How people respond, however, is up to them. It’s hard responding well to any friend or family member confronted with a huge challenge, whether that challenge is autism, cancer, divorce, job loss, or death of a loved one. Sometimes you feel like you need to make the challenge smaller for them or fix it for them because your heart is breaking, too, and you want to do something, anything, to make it better. I’ve certainly felt those things when on the responding side.

Now that I’ve been on the telling side, though, I think I’ve figured out what makes a good response. If you find yourself fishing for something to say, try something like this:

“Wow, this is huge. I can’t imagine what you’re going through right now, but I’m here for you. Feel free to talk to me, vent to me, complain to me, cry on my shoulder, punch my sofa pillows, whatever you need. Teach me what this means so I can help you carry this load.”

George and I are so blessed. We have heard variations of this response from Day One of our autism journey, and I simply can’t tell you what a difference it has made, at least not without making a blubbering fool of myself. So I’ll just paraphrase an expert:

The best thing about being the Raihala family is…love.

Thursday, September 18, 2008

Ike Strikes...Ohio?

Sunday, September 14, 2008, will go down in history as the day Ohio—a land-locked state in the flippin’ Midwest—experienced a hurricane. Okay, I exaggerate. Ohio experienced a tropical storm despite the fact that we are nowhere near the tropics. Go figure.

Of course, what the Gulf Coast experienced was far, far worse than what Ohio has endured. I’ve never experienced anything that terrifying or dangerous in my life, or anything as uncomfortable and dangerous as the aftermath, either. My prayers go out to all those affected so dramatically and so tragically by this storm.

Frankly, our experience in Ohio was enough for me. Ike blew through Ohio with 78 mph winds and knocked out power to almost 2 million people. There was some flooding, but not in our little corner of the state. We just got the wind, which was enough to kill three people and put many others in danger from the power outage and general chaos. Just think of the elderly and infirm who had oxygen tanks needing refills, the patients at home who needed electricity for the machines that help them live, diabetics and others whose medications needed refrigeration, and anyone who had the horrible bad luck to need emergency help when roads were blocked, phones didn’t work, and all emergency services were completely maxed out.

Seeing as I am not a health care professional, fire fighter, electrician, police officer, or other sort of trained and really useful person in situations like this, I did what the voices on the radio said to do: I stayed home and listened to the radio.

My weather radio was such a blessing. I bought it several years ago and thought I was paying too much at the time. Now I know how much it’s really worth, and it was a steal at $25. If you don’t have one, get one. Right now.

The radio provided information, which is quite comforting when you’re in a black-out. Even more importantly, it was very entertaining. I haven’t listened to local talk radio in, oh, forever, and found it fascinating to pass the time listening to people say, over and over again, how they’ve lived here all their lives and never seen anything like this. Well, I haven’t lived here all my life—just 4.5 of my 41 years—and I HAVE seen weather like this. It’s scary and intense and for some people very dangerous, but it could have been much worse. Basically, if you are alive, have safe shelter, are in reasonably good health, and have a box of graham crackers in your pantry, you shouldn’t be complaining. Well, maybe just a little. But really, perspective is essential at times like these. And the radio personalities I heard did a fairly good job of keeping things in perspective.

Those same radio personalities showed me how stupidity infects the masses at times like this. Traffic lights went out everywhere, trees and power lines blocked roads, and police and government officials told people to stay home unless absolutely necessary. Do the masses ever listen to police and government officials?

That was a rhetorical question.

Local radio reported children climbing damaged trees tangled in power lines and cars blasting through intersections rather than honoring the four-way-stop rule for dead traffic signals. Experts warned people “if in doubt, throw it out” with regard to food in their fridges, to be extra careful with chain saws, to beware of carbon monoxide poisoning from generators, to keep an eye on candles, and to stay away from fences if power lines were down on them. People don’t listen to experts any more than they listen to police and government officials. That’s one reason why hospitals have emergency rooms: for all the stupid people.

My own stupidity was unlikely to be lethal because I listened to the authorities and experts. I’m a good little girl who threw out all her food, who would never touch a chain saw under any circumstances, and who went nowhere for two whole days and was perfectly happy about it. But why, after more than 24 hours without power, did I walk into a room, flip on the light, and expect it to work? Honestly, there was always a split second of surprise (“Oh, why didn’t the light turn on?”), followed immediately by recognition of my own stupidity.

Because we in our little cul-de-sac had it so easy in this crisis, I can say that the saddest thing about it for me personally was my lack of connectivity. I really, really missed my computer. And my wireless network. And my cell phone, which, even after George took it to work on Monday and charged it, had no bars and was useless. Like me.

Obviously, I can live without these miracles of technology, but every time I walked past my closed laptop without its friendly green light winking at me, I felt very sad. My only comfort was the sure knowledge that it was in Duke Energy’s best interest to get me back online as quickly as possible.

Thanks to the hard work of many, many really useful people, the little green light is on again, so let me share my random advice about living powerless:

1) First and foremost, don’t be stupid. I mean it. Listen to authorities, don’t try to fix things you’re not qualified to fix, and stay out of the way unless you are a really useful person. The really useful people are busy enough without having to save your butt, too.

2) Definitely own a gas grill with a burner and a full propane tank. If you can also have a husband who is creative and clever and likes to pretend he’s a chef instead of a military consultant, you will eat very well without power. We did, and it wasn’t because of me. George is the really useful one.

3) Be powerless in mild weather. Highs in the 60s and lows in the 40s make living powerless ever so much easier.

4) Be powerless at the full moon. Night is way less scary at that time of the month, so to speak.

5) Definitely have clean, running water while powerless. We could wash, drink, and flush. I can do without other stuff if those essentials are covered. My hair was a little scary, but at least I didn’t stink. So don’t ever let the water go out on you, and you’ll be fine. If the water does go out, despite your best efforts, I can’t help you. Only the really useful people can, unless you are smarter than I am and stockpile bottled water in your basement.

6) Always make sure your underwear drawer is full. This may seem silly, but I was insanely happy when I realized my underwear drawer was full. You can never have too many pairs of fresh undies in a crisis situation.

7) This bit of advice may be shocking, but hear me out, please. Cut down all the trees around your home. We live in a newer, cookie-cutter style neighborhood, where all the look-alike houses have a single, small, mandatory tree plunked into the center of the front yard. Our mandatory tree did us the favor of dying last year. Unlike all the people who live in beautiful, woodsy neighborhoods with lots of character and charm and shade, we weren’t worried about being arboreally damaged. Being arboreally damaged is either expensive or painful or both. The trees will win. Get rid of them. Character and charm are overrated anyway.

If you just can’t bear to part with your leafy friends, at least have trained and licensed tree experts prune them annually for you. Do whatever these experts say and pay them whatever they ask. One guy called the radio station and told everyone how he paid experts to take care of his trees each year. His trees, therefore, were very healthy and didn’t lose any large branches or fall over in the storm. If you can’t be me, without any trees, then be him, without any arboreal damage.

8) Have lots of candles and matches on hand. Just recently, I’d been thinking about purging some of my candles in a futile attempt to rid my house of clutter. Boy, am I glad I did not do anything so stupid. I wrote the draft of this essay by the golden glow of candlelight at my kitchen table while listening to classical jazz on my weather radio and sipping a very nice Cline Zinfandel. Yeah, we suffered in our house.

9) If you don’t have an emergency kit, get one. I had all essentials for this particular emergency covered: batteries, candles, matches, flashlights, first aid kit, radio, a pantry of food, and five bottles of wine—especially the wine.

So there you have it: Susan’s advice for being powerless. That’s about as useful as I can be in a crisis, but I really hope you never need even that much help. Keep safe.

To all the idiots shooting off fireworks late at night when everyone’s windows were open and all the tired mommies were trying to enjoy a little peace and quiet after days of powerless parenting…I hate you. My golden retriever hates you, too.

Thursday, September 11, 2008

Just Tri-ing to Understand

Last weekend, George and I left our boys at home in the loving care of my mother and went to Madison, Wisconsin, for five days so George could participate in the Ford Ironman Wisconsin Triathlon.

You see, I married a totally insane man whose idea of fun is to swim 2.4 miles, bike 112 miles, and then run a marathon. That’s another 26.2 miles, in case you didn’t know. A total race distance of 140.6 miles. All in one day.

Did I mention he’s insane?

This was year four of George’s Ironman (IM) career. The first year, 2005, he did not finish IM Wisconsin, though he made it through the swim, bike, and half the marathon before quitting. It was hot and windy that year, and he was in good company—over a third of the participants did not finish, a record for that course. George had gone by himself, and it broke my heart thinking of him, miserable and alone, driving back to his hotel room with a DNF (Did Not Finish) by his name.

In 2006, he finished IM Wisconsin with a time of 13:25, well within the Ironman race limit of 17 hours. He did this race alone, as well, and the joy in his voice as he recounted his experience to me over the phone made me ache to think I was not there to celebrate with him.

In 2007, we took our family vacation to the Adirondacks so George could race in IM Lake Placid, but around mile 130 of the course, a nice, sensible police officer called an ambulance to take my husband to the medical tent, where he joined hundreds of other people who were hooked to IVs and wrapped in warm blankets. He was eight pounds light from dehydration, completely white with the salt he had sweated out of his abused body, shivering uncontrollably, and slightly disoriented. A few bags of IV fluid and a gallon of chicken broth later, he walked out of the tent and into my arms.

I’m not sure it helped him having us there, but at least he had a shoulder to lean on and didn’t have to drive himself back to the hotel alone. I went out to get him a Big Mac and fries at 11:00 pm. It was the least I could do. Actually, it was all I could do.

My aunt asked me last year if I understood why George felt the need to do this to himself. I answered honestly, “No, I don’t understand at all.”

So this year, we left the children with Grandma Dianne and drove to Madison together. I hoped that without the distraction of the boys, I would finally understand why an otherwise intelligent, stable, sensible, 43-year-old man would do this to himself. Again.

I paid close attention, took in everything I could from the experience, and kept detailed mental notes. I still don’t get it, but I did learn a lot this year from my careful observations.

1) It’s now patently obvious to me that I am not alone. Last year, I was too busy keeping Nick occupied and chasing after Jack, who for some reason felt the need to run in a huge circle around the finish line over and over through the crowd. You can’t do much observing under these circumstances.

This year, I noticed lots of other people—men and women, young and old—wandering around with the same bemused look on their faces that I saw on mine whenever I looked in the mirror. These bemused people are sometimes referred to as Iron Sherpas or, if we’re married to the crazy ones, Ironmates. Many of us carry bike pumps around on race day, looking like husbands stuck at the department store holding their wives’ purses, not quite sure what to do with them. Not one of us understands why the men and women we love would do this race, but we love them enough to carry their bike pumps anyway.

I saw a woman about my age hanging out at the finish line on race day wearing an Ironmate shirt that said “Just tri-ing to understand.”

I wanted to hug this woman as a long-lost sister.

2) It’s also obvious that George is not alone. This year’s race started with 2,207 athletes. Many of these people, including George, had already pre-registered to participate in next year’s race. As I waited to cheer George on at the transition from swim to bike, the man next to me admitted that he was checking out the race in hopes of doing it next year. I hope he got in because the morning after the race, general registration opened for just a few hours. The line of hopefuls wrapped around the Convention Center, and the race filled quickly. There are just too many people who, for some unknown reason, want to do this race.

3) It takes thousands of dedicated volunteers to make this sort of race happen. Imagine the number of people it takes to activate race chips, repair bikes, register racers, set up and tear down the finish line, mark the course, patrol the course, keep non-participants off the course, keep participants on the course, ride in kayaks to make sure no one drowns on the swim, staff and supply aide stations, smear Vaseline on chaffing spots during the marathon, provide medical care for a bunch of crazy people…. The list goes on and on.

At the finish line, the video and race photos only show the victory of crossing. But I watched what happened after participants crossed the line into the chute of rubber-gloved volunteers ready to “catch” them. One volunteer’s only job, as far as I could see, was tearing off reflective silver blankets from huge rolls and piling them onto tables for the volunteer “catchers” to grab and wrap around the race finishers. Other volunteers handed the finishers medals, t-shirts, and hats as the catchers continued to hold onto them so they would not fall down. Many volunteers escorted a number of finishers straight to the medical tent where even more volunteers put IV fluids into them.

I wanted to hug each and every one of the volunteers, too.

4) The finish line is incredible. I can’t express the thrill of watching crazy person after crazy person finish this crazy race. As each racer crosses the line, the announcer calls out his or her name, and yells, “You are an Ironman!”

I knew no one else participating in this race, but I tell you, I loved them all, cheered them on until I was hoarse and my hands hurt from clapping. I desperately wanted to know the story of each and every one of them. Was this their first IM race? How old were they? What made them do it? How long had they trained? What did it mean for them to finish this race? Why were they here? I would put up with Bob Costas’ penchant for melodrama if only he would tell me these stories, but I think he just shows up for Ironman Hawaii.

Why do these triathletes push their bodies so hard in three sports? I don’t know. Why do they spend hours, weeks, months, years training to do a race that they may not even finish? I don’t know. Having been there, paying attention, I think it may have something to do with that finish line and the announcer saying, “You are an Ironman!” There must be something about that experience to make all the pain worth it.

As George tells the story of his race this year, he lost the will to live around mile 16 of the marathon, but after some salt pills and Gatorade and a few miles of walking, the leg cramps stopped, and he thought he could finish it. He did, with a personal record of 12:41. I ran to the end of the finisher chute and caught him as he stumbled toward me, wrapped in a silver blanket and wearing his finisher medal and cap, holding his t-shirt.

I am still trying to understand why he does this to himself, but this much is now very clear: I’ll be proud to carry his bike pump next year, and the year after, and the year after, because…

George Raihala, you are an Ironman! Again!

Thursday, September 4, 2008

Forgive Me, Father, for I Have Sinned

Forgive me, Father, for I have sinned. It’s been, well, forever since I last came to the confessional, seeing as I’m not Catholic and all. But I really feel the need to get this off my chest. The guilt of it is weighing me down, Father, and I need to move on with my life. Will you help?

Oh, thank you!

My list of literary sins is long. If you need a potty break, Father, I’ll understand.

I confess that I have hated some of the Great Books of Western Civilization.

I know. It’s shocking, isn’t it? I do have a master’s degree in literature, after all. I ought to love these Great Books, ought to talk about them with reverence, and ought to honor them for their brilliance. But my heart just isn’t in these:

--The Aeneid, by Virgil (Homer, even if he never really lived, was a much better storyteller. Those Romans just couldn’t do Greek as well as the Greeks did. I loved Virgil in Dante’s Inferno, though.)

--The Song of Roland (Honestly, Father, it’s the only work of literature from the Middle Ages that I just can’t make myself like. Maybe I need to read it again. That worked with Beowulf….)

--Don Juan, by George Gordon, Lord Byron (He single-handedly killed Romanticism. Okay, not really, but oh, my poor brain.)

--In Memoriam, by Alfred, Lord Tennyson (Um, maybe Alfred killed Romanticism. I’m sorry for his loss, but any “Book” that makes me pinch my cheeks to stay awake is evil, no matter how “Great” it is.)

--David Copperfield, by Charles Dickens (Yes, yes, I loved Bleak House, Hard Times, A Christmas Carol, and Great Expectations, but why is DC so very, very long?)

--The Story of an African Farm, by Olive Schreiner (Olive was a woman writer, and I am a woman—sort of a feminist, even—and should honor her for publishing a serious book in a man’s world, but I just can’t. I can’t!)

--A Doll’s House, by Henrik Ibsen (I read it, honestly, but don’t even remember enough to make a pithy comment. Is that bad?)

--Anything and everything written by Thomas Hardy: prose, poetry, all of it … even the few pieces he wrote that I haven’t been forced to read. I really tried with Tess but just couldn’t bring myself to care anything about her. What is wrong with me, Father?

--The Red Badge of Courage, by Stephen Crane (This is a ninth-grade torture device, right?)

--A Passage to India, by E.M. Forster (Teachers must use this as punishment for all the naughty thoughts eleventh graders have. It doesn’t help.)

--The Old Man and the Sea, by Ernest Hemingway (Yeah, yeah, I get that Papa was a great writer and his style was revolutionary, but I just can’t care because his “revolutionary” style is so freaking depressing. And truly, the fish gets eaten by sharks. Shouldn’t the old man be grateful HE wasn’t eaten? Let’s get our priorities straight, shall we?)

--The Pearl, by John Steinbeck (At least it’s short.)

Then there are the Great Books I tried to read but just couldn’t slog through no matter how hard I worked at it. They weren’t even assigned, but I felt like I “should” read them. Oh, how very silly of me:

--William Faulkner’s Absalom, Absalom (I love long sentences. Usually.)

--Vladimir Nabokov’s Lolita (I almost finished. Does that count?)

--John Steinbeck’s The Grapes of Wrath (Does the turtle ever get across the road? Never mind. I just don’t care.)

--Albert Camus’ The Plague (I only read two paragraphs, but it sat on my bookshelf for several years before going to the used book store. What’s that you say, Father? The road to hell is paved with good intentions?)

--Jack Kerouac’s On the Road (Excuse me, Father, but do you have to be on drugs to get Jack’s point with this one?)

There’s also the one assigned book that I didn’t read at all, though I wrote a reasonably competent paper on it with the help of the venerable Professor Cliff Notes in tenth grade:

Babbitt, by Sinclair Lewis

Finally, Father, there are many classics I never read, yet I call myself well-read. Does this make me a poser? This list could go on forever, especially where American novels and poetry are concerned. Do you think I’ve made up for those Great Books that I haven’t read by reading a lot of really obscure—but definitely Great—medieval literature? After all, the medieval period was the Age of Faith. That should count for something.

I’m certain that there are other literary sins I am neglecting to confess, but frankly, I’ve blocked them from my memory.

No, Father, I don’t sound very contrite, do I? Must I be contrite for forgiveness? Can’t I just pay a pardoner and be absolved? Oh, pardoners don’t exist anymore? What a shame. Perhaps I can take H.G. Wells’ The Time Machine back to the Middle Ages and pay a visit to Chaucer’s Pardoner. Does the machine make a stop in the Middle Ages? I can’t remember.

What did you say? You mean there’s no such thing as a literary sin? It’s not a sin to dislike Great Books? I won’t burn in Hell? I don’t have to turn in my library card? I’m not a cultural infidel?

Oh, what a relief!