A promise kept (finally)

I'm still not sure what possessed me to make my 5K promise last year. I do know that I blew my self-imposed deadline by a number of months. Life and health got in my way for awhile, and though it was tempting to let my online commitment fade quietly away, I decided a promise was a promise.

Athletic activities have never come easily to me. When skills like motor coordination and endurance were handed out, I was out to lunch. I'm a lousy runner.

On March 16, I kept my word and ran my first 5K. In case anyone is doubting my assessment of my capabilities, know that the 25-year-old winner of the Shamrock 5K finished the entire course in less time than it took me to complete a mile. I met my goal of running the entire race, with no walking and no long pauses. 

I have nothing but respect for a race in which at least half the field warms up with a beer.

At the starting line. During the race I got a lot of compliments on my Team TACA shirt as people passed me. 

Post race. More beer. Tired feet.

To mangle a quote from Dorothy Parker, "I don't like running. I like having run." Which probably means I need to sign up for another race. I'm unlikely to run for the love of it; the looming spectre of another 5K will keep me going.

As of April 1, the fundraising cycle begins anew. For our annual update and slideshow, visit my 2014 Family and Friends page.

The numbers are up. Again.

I told Mike this morning that I can't decide who aggravates me more, the people who deny an autism epidemic or the ones who characterize autism as a gift.

Mike chose option 2. Good call.

If it's a gift, then on behalf of the 1 in 68 children the CDC now estimates is affected by autism, I'd like to return it.

Some may read that and decide that I don't love or accept my daughter. They’d be absolutely wrong. Leah is loved and valued for who she is. She is a gift. Her autism is not.

Autism bestows seizures on some children. My friend whose son is attended by a nurse at school because his seizures are life-threatening has never expressed gratitude for his autism. Her love for him shines through when she talks about him, though.

Children with autism are six to eight times more likely to have GI problems than their neurotypical peers. Leah was diagnosed with celiac disease at 3. I'm fairly certain frequent warnings from her parents about food that isn't 'safe' for her gets old.

Almost half of all children with autism wander, and 42 children have died as a result of wandering since 2011. Do those grieving families think of autism as a gift? Doubtful.

My friends whose toddlers stopped talking overnight have never characterized this as a gift. Some of those children regained speech after a lot of hard work. Others didn't.

We've worked for years to treat Leah's autism. She's happy, which is great news for her parents. She's progressing, albeit on a different trajectory than her sisters. And we've been able to identify and address issues like her celiac disease precisely because we pursued treatment. Her life is better because we ignored anyone who implied there was nothing we could do.

Meanwhile, the government, via the CDC and the IACC, has watched the autism rate rise with no sense of urgency. Even the likelihood that a significant chunk of the lucky 1 in 68s will need government assistance when they reach adulthood doesn't seem to be motivating anyone. We're preparing Leah for a job -- she goes to a school with a robust work-study program and works on life skills at home, too. But she will never drive a car, and is unlikely to land a job with benefits or a high salary. I have no illusions: It will fall to us to care for Leah for the rest of her life.

That's our privilege, because we love her, but that's also an extremely expensive 'gift.'

Not in my backyard

One of the hot topics in my news feed last week was a hateful, anonymous screed directed toward an Ontario family living with autism. I've mentally responded to the writer about 15 different ways, sometimes like a trucker, other times with a lacerating monologue (think West Wing in its heyday). It wasn't just the writer's vicious words that upset me -- the letter itself was a reminder that Leah's world may never be completely insulated from intolerance.

I left those responses in my head, because taking the time to type them felt akin to giving that writer more energy than he or she deserves. Soon another, happier thought rose alongside the anger: Not in my backyard. Whatever happens in the wider world, in this neighborhood, Leah is safe. We have awesome neighbors. And the good people are the ones who deserve the words, not the sociopaths.

Leah flaps and vocalizes and sometimes delivers 'yes' or 'no' answers in threes. Sometimes she doesn't answer at all when spoken to -- one thing she has in common with many 13-year-olds. At our neighbors' houses, she has made herself at home in upstairs bedrooms and in backyard hammocks and swings, usually without taking the trouble to ask permission. Once we had to stop her from breaking into the home of her favorite cat because she wanted to say hello.

How do the neighbors respond? With acceptance. With smiles. Sometimes with kindness we may never fully repay. Wherever the fun is on Putnam Lane, our family feels welcome. This week's story reminded me that we can't take that for granted.  

The finish line, finally

Finding Leah's next school felt a lot like a college search. (The closest we'll ever come to one with this child.) A welcome, if time-consuming, after-effect of Leah's victory in IEP Round 4 was the amount of time we spent fact-finding, and then waiting for gut instinct to take over as we evaluated which place has the best chance of preparing her for the rest of her life.

Up for discussion were three school programs that will likely keep Leah until she's 21. After that, school won't be the center of her life anymore, and her days will need to be filled with something else. We hope a job will be part of that equation, as well as other activities that will make her happy. Overall,  not terribly different from our aspirations for Lauren and Maddie. Certainly this decision felt every bit as significant as the choices we'll help them make as they finish high school.

I've been out of college longer than I care to admit, but I'm not too old to remember what it was like to check out college campuses. I found a few similarities:

Tours. All three schools we visited were happy to show off their facilities. At my alma mater, Notre Dame, the tour highlights included the golden dome, the football stadium, and Touchdown Jesus. I checked out dorm rooms and the student center. For Leah, the classroom highlights were iPads and SmartBoards, and she happily sampled OT gyms and calming areas. The bubble column at Kennedy Krieger was a favorite.

Interviews. Admissions teams want to know all about student strengths and weaknesses. Prospective college students are all about self-promotion. Parents of prospective nonpublic students are all about the weaknesses. It's how we arrive at the application process. Your kid draws bubble guppies all over every other language arts assignment? Tosses Crocs? Flips chairs? Make sure all of it is on the record. While Behavior Intervention Plans (BIPs) are the sole province of the special education school, Notre Dame's Office of Student Affairs probably would have liked one for every student in the school, with provisions like limiting access to beer and the opposite sex.

Life skills. On college campuses, you can usually find professors who seem ill-equipped to function outside the classroom. At least Leah will get some life skills instruction during the week to go along with her academics. Truth be told, Leah is already better with laundry than I was in college. I used to put it off until I'd been through every last pair of underwear. Leah likes to launder every Sunday. (During my years at Notre Dame, the women's dorms came with washing machines. The men's dirty clothes went to St. Michael's Laundry, until it burned down in my junior year. Ha.)

Tuition. Next year, Notre Dame will cost about $57,000 in tuition, room, and board. Nonpublic tuition around here averages more than $65,000. Unbelievably, I found a way to make Notre Dame look like a bargain. The other major difference is that Anne Arundel County Public Schools will be receiving the tuition bills.

The best news is that we found a school we're truly excited about. Leah will start at St. Elizabeth School in Baltimore on May 13. I have no idea what I'm going to do with all the extra mental energy, in the absence of fretting about school. We're definitely ready to return to one IEP meeting per year for awhile.

Onward and upward, we hope.

More thank yous, and a few hurdles

My first thank you has to go to my Enabler-in-Chief, my sister Heather Cocks. I mentioned my 5K scheme, and she agreed to take me running (the first time I've willingly run anywhere). So I tried it, on a nice, dirt track during our trip to California, and I didn't keel over. If she found her older sister pathetic, she hid it well, and she enabled me even further with a donation soon after I went home to Maryland. Of course, this is the sister whose Cabbage Patch doll got a really weird nickname (courtesy of me), and who was briefly nicknamed Young Ploppy after a character in Blackadder. 

Maybe Heather's support is not so benign after all.

In keeping with this year's track and field theme (what good is a theme if you can't exhaust all possible metaphors?), I hit a hurdle pretty soon after I got home from California. One look at my donation page told me I'm going to have to actually learn to run for real, since I'm more than halfway there.

My intestines had other ideas. 

A week ago Friday, I ended up in the hospital with a bleeding ulcer. Two nights, two units of blood, and two days on clear liquids later, and I was discharged with some stomach-healing meds, orders not to take up smoking, and strong suggestions that I avoid spicy, acidic foods for a while. No activity restrictions, but a warning that, due to the anemia that has accompanied the ulcer, I might not have a lot of endurance, and I should be prepared to take it easy.

(They also asked whether I have a lot of stress. Um, yeah. I mentioned that if they didn't manage to discharge me by Monday morning, I would be attending IEP Round 4 with my IVs still in my veins.)

They were right about my endurance. It isn't pretty. A half hour's worth of physical activity and I'm ready for a nap. In one of life's great ironies, I have a perfect excuse not to run anywhere, and I'm annoyed about it. Where was this about 30 years ago, when every gym class was a nightmare? My donation totals tell me I'm probably going to have to do this, so on I go, maybe a little more slowly. Twelve-year-old me would not approve at all. 

That means it's time for some more thank-yous. Sort of. These are people who knew their donations were pushing me toward the starting line. 

Ginny Reed. My aunt, who is either really supportive of Leah, or found a way to let me know I was never her favorite niece.

Heather Taylor. My athletic neighbor, who offered herself as a running partner. I've played Bunco with both Heather and one of her frequent workout partners from her gym. Cheryl often complained that whenever Heather had a few glasses of red, she devised new, torturous workouts for them. Which means the next time I see her carrying a bottle it's going to be time for some sprints. 

Colleen Sugar. We worked together at The Dallas Morning News, my first job out of college. She was a great colleague. Did I steal too many office supplies from her desk?

Diane Kirk. Diane is a runner herself, an autism mom, and a Health/PE teacher who organizes an autism walk for her freshmen every year and directs the proceeds to TACA. A runner herself, she offered to do this as-yet-unchosen 5K with me. We could do a re-enactment of The Tortoise and the Hare.

Chris Lucey. An old friend from Notre Dame, who lettered in track there. Thank God he lives too far away to watch any of this.

Dan Cichalski. A fellow ex-Observerite from Notre Dame, although he was there with Heather, not me. I expect to see him at the finish line with a Primanti Brothers sandwich.

Seriously, TACA families appreciate your donations. Your help keeps our families moving past hurdles of their own. Our page is still live, until June 30.

Deep gratitude

Before I start 'thanking' the people who donated to TACA on our family's behalf after I announced my 5K plan, I'm going to express my gratitude to my first donors, who I am reasonably confident are not motivated by a desire to torture me.

• My mother, Kathie Cocks. OK, she might owe me a few hours of punishment. If I had announced this before she gave her gift, she might have funded the full amount. Seriously, though, she is an amazing grandmother to Leah, completely supportive of everything, and even willing to do overnight babysitting and give supplements. That may seem like the world's feeblest compliment, but trust me, it isn't. Sadly, I have met autism parents who tell me about grandparents who are unwilling to be left alone with their autistic grandchildren. We know what we have, and we're grateful for it.
• Isaac and Sheila Heimbinder. The Heimbinders lived down the street from us when I was in elementary school. They have been generous to TACA every year since our chapter formed. They saw a few of my attempts to play sports as a kid and if they've read about the 5K plan, they might be thinking, "Yeah, right."
• Chris and Christine Donnelly and John Blasi and Kathy Stohr. Unfailingly supportive every year. We go back to college and late nights at The Observer (longer ago than anyone cares to admit). If they'd known about the 5K, they might have kept their wallets closed. They've seen me stumble around enough already.
• Debbie Wetzel. Debbie runs Partners For Success, which is a great source of information and assistance for parents of kids with all types of disabilities in our county school system. Their lending library is great, convenient, and free. Debbie comes to our meetings when she can and spreads the word about our chapter.
• Eric and Kera Matsui. They moved in down the street last summer and they already fit into our neighborhood like they've been here for years. Their families might want to stage an intervention.
• Mike and Leslie McQuade. See above. Only difference is, they live across the street.
• Cheryl Peeples. An amazing mother warrior. I met her at an Autism One conference several years back. I'm hoping to get back to another one sometime soon, and when I do, I hope she'll be there.
• Steve and Melissa Slatnick. Great neighbors, great supporters of our family. If I'd asked Steve's advice, he probably would have suggested a bike ride instead of a run.
• Ben and Jonnie Dorman. Cherished friends from my family's time living in England. Lauren and Maddie had great fun meeting their grandchildren on our recent trip to California.

I try to do 'real' thank you notes too, which I usually save until the end of the campaign in June, when I can report our total. In the meantime, maybe a virtual shout-out isn't too much of an etiquette violation? Thank you all for your gifts to TACA. Our page is still live, until June 30.

Autism is definitely not a sprint

Two things are high on my to-do list this spring: Exercise more, and kick off the fundraising for our Talk About Curing Autism (TACA) chapter. I had a brain wave one day (I know, yikes) and decided to combine the two. So here's my pledge: If I raise $5,000 by the end of May, I will run a 5K in June. That may not seem like much, except that I have spent most of my life avoiding running anywhere. It's usually not pretty when I undertake any kind of athletic endeavor. If you ever took a PE class with me, you know this already. In short, I have found a way to make autism truly feel like a marathon.

So, if you want to make a donation in honor of autism awareness month (or to get a tax deduction before April 15), you can visit our family's page at http://faf.tacanow.org/2013/MD/leah/. If you want to imagine me running around Crofton, grumbling all the way, click on the same link. Also, check back here every now and then. If I have to train for this thing, I will probably be writing about it (and possibly 'wimping and whinging,' as my dad would have said).

World Autism Awareness Day

Today, the eyes of the world are supposed to turn toward autism. Autism Speaks actually uses the word 'celebrate' in connection with its Light It Up Blue campaign, which draws participation from notable landmarks like the Great Pyramids of Egypt, the Sydney Opera House, and even Reunion Tower in my former home of Dallas, Texas.

The pictures look pretty, if you like symbolic gestures. The use of the word 'celebrate' in connection with an epidemic disturbs me. We're now at 1 in 88 -- or 1 in 50 schoolchildren, according to a recent study. The kids we're celebrating are going to get awfully expensive once they start aging out of the school system.

Does that mean we don't celebrate our beloved Leah? Quite the opposite. We celebrate who she is in spite of her autism. A couple of weeks ago, she was poked and prodded at a clinic at Kennedy Krieger, told what she could eat and when, and stayed still for blood draws even as the techs muttered things like 'tough stick.' Leah is my hero.

People with autism can be some of the most uniquely gifted individuals around. I will happily celebrate a kid's perfect pitch. I have applauded and been genuinely in awe of a couple of students who, when given a date (past or future), can tell you what day of the week it falls on. I can think of a couple more who will be graduating from sought-after magnet programs in our local school district. I am thrilled to watch them advocate for themselves. People with their gifts are often the ones you'll see representing autism during all of the awareness events.

Their achievements are celebration-worthy, but they only tell a fraction of the story. True autism awareness means looking past the blue buildings and thinking about what life might be like for people across the spectrum. Trust me, we are aware of autism in our house every single day.

We were aware of autism during our California vacation this week, when one of the Phineas and Ferb dance parties at Disneyland did not go off as scheduled. Other park visitors were too. During later shows (we were front and center for all of them), Phineas and Ferb themselves were quite aware, as Leah edged closer and closer to them with every song. Thankfully they -- and the accompanying Fireside Girls -- treated Leah with good humor and compassion. At the end of that day we were aware again, when we had to leave the park rather abruptly, because Leah was done for the day. We know the consequences of pushing her too hard, so we listened when she said she was done, even though we had to 'disappear' without a proper goodbye to some very old, cherished friends.

My sister and her family were aware a couple of times during our visit this week, when Leah woke around 2:00 am and decided it was the right time to play the piano. Sometimes parents don't get much sleep when they're trying to safeguard the rest of others.

Not long after we get back, we'll be in a conference room again for our next round of school system warfare. I'm pretty sure we've raised some awareness among our Facebook friends with our IEP-related status updates. This next round should be the decisive one. The overarching theme: Schools can be spectacularly ill-equipped to work with ASD kids. Districts will make tremendous efforts to avoid admitting that's true, until it becomes painfully obvious to everyone that their efforts are a lot like putting lipstick on a pig. By then, a lot of time has been lost.

Amid all of this awareness, we work hard to have hope. Sometimes it's easy. The contentment on Leah's face as we ride the ferris wheel on Santa Monica Pier and her excitement as her feet touch the Pacific Ocean remind us that she has the same capacity to enjoy her life as the rest of us do. Those are the moments we celebrate. Not Leah's autism, but the moments we see through it to the beautiful soul inside.

If you want to honor families with autism this month -- or any other, because facing autism is definitely a 365-day proposition -- please consider a donation to an organization that helps families. Since 2008, I have been a chapter coordinator for Talk About Curing Autism (whose founder, my friend Lisa Ackerman, also blogged about 'celebrating' autism). I give TACA my time because their resources go where they're needed most -- toward supporting families. Our family's annual fundraising page is online, and includes a written update and a video. Please pay us a virtual visit, and help us honor Leah -- the person, not the diagnosis.

 

Posted with Blogsy

Why a cure?

One of my favorite events in May is the autism walk at our local high school. The freshman class earns required service credits, and TACA earns some much appreciated fundraising dollars. I get to put on my official shirt and tell an auditorium full of teenagers about autism during the pre-walk assembly, hopefully in a way that resonates with them after they leave the room.

Arundel High School educates a spectrum of teens with autism, in both the functional life skills program and the general education classes. I knew going in that a few of this year's walk participants have autism themselves, and it made me wonder how they might feel about the word 'curing' in TACA's name. Not everyone loves a group that talks about a cure. Now and then, I'm unfriended on Facebook, or a comment reaches my ears that TACA volunteers are off the wall or simply terrible people. That's fine. I can take it. I wanted this audience to understand one of the basic truths of my life: I can advocate for treatments and even cures and still love my child just as she is. The two coexist just fine.

After introducing TACA, saying my thank-yous, and telling them they are the best class ever (as I do every year), this is what I told them:

What do we mean when we talk about curing autism? I'll tell you what it doesn't mean: It doesn't mean taking away the unique gifts some people on the autism spectrum have. Kids with autism are some of the funniest, smartest people I know. Some have gifts in music or in art, or can do cool things that most of us can't. I don't want to take away who they are. But I would love to make it easier for them to sit in a classroom where people are crumpling papers or tapping pens -- all the noises you probably hear in your classes every day -- without wanting to come out of their skins. 

But as you've already heard today, autism is a spectrum. I see some people wearing the light blue walk t-shirts. I've also see plenty or darker blue shirts out there. All of those shirts are blue, but they are a lot of different shades of blue. The autism spectrum is like that too. On one end, we have the people with unique talents. In another place on the spectrum are people who have trouble expressing themselves. 

Imagine for a minute the last time you were sick. You've probably all had a day this year when you woke up in the morning and didn't feel well. Maybe you had a sore throat, or the flu, or a stomach bug. You wake up in the morning and you know you can't go to school. What's the first thing you do? You come downstairs, tell your mom or dad, 'my throat hurts,' 'my stomach hurts,' 'I have the flu,' 'I have the West Nile virus.' 

But what if you can't talk? What if you don't have the skills to express how you're feeling? How will you let people know you're sick? If you have autism, and you can't talk, the adults in your life probably use a lot of picture schedules and checklists to tell you what you need to do every day. Even while you're feeling like you might throw up within the next two minutes, you have someone waving something in your face, telling you it's time to brush your teeth or it's time to do math, when all you want to do is curl up and wait to feel better. Imagine how you might react to that. You might throw that schedule right back at the person who's giving it to you. I know kids who have banged their heads against the wall when they're in pain, or who lie on the floor and cry or scream, because that's what they can think of to do when something is wrong. My daughter can talk, but she's not good at telling me how she's feeling. Sometimes I can't tell that she's sick until she gets upset. That's hard for me to deal with, but a million times harder for her. 

As freshmen in high school, you've probably all had a lousy day at school before too. Maybe when you arrive home, you tell one of your parents about this kid who was messing with you, or that teacher who yelled at you. Your parents probably try to find the right words to comfort you, but as a parent, I can tell you that inside they're sad. It hurts them too because they love you.
I can also tell you that if and when my daughter is able to do that with me, inside I'll be cheering. I will try to say and do all the right things to comfort her, but if you hear the sounds of a party coming from Crofton, that will be me. Not because I like seeing my child unhappy (I don't), but because I will know that we have found one of the biggest pieces of our autism puzzle. If she can tell me when something is wrong, my job to keep her safe, healthy, and happy just got a whole lot easier. Those are the things we need to cure.

I'm not trying to create a cookie-cutter child, or the prom queen or the class president. I'll settle for a long conversation. I talk with doctors and specialists and other parents because in the end, I want to talk to my daughter.

Holland Schmolland

Flying under the radar is not always a Hamilton family forte. Particularly not when we arrive at the community pool only to be informed on no uncertain terms that Leah does not want to be there. At that point, we're left with a couple of unappealing choices: Public misbehavior by a 9-year-old who is acting like her shoe size, or rewarding bad behavior (as well as holding other family members hostage to it) by turning tail and leaving.

We've been doing this long enough to know that there are bigger problems than a few looks and the occasional comment, and one of those would be a child who believes she has something to gain by throwing a fit. For us this was a no-brainer: We stayed, and we put up with the shouting and the crying until Mike, with some well-timed roughhousing, was able to remind Leah why she loves to swim. A rocky start was transformed into a normal (for us) outing.

It made me think of a line from "Holland Schmolland," a wonderful essay about living with autism: " ... we ignore these looks and focus on the exit sign because we are a proud people." I have no doubt that some people at the pool could not understand why we kept her there. I can't worry about that. We'd make the same choice again.

If you haven't seen this before, it's worth the read. If you have, enjoy it again. It speaks to me every time I read it.

Holland Schmolland
by Laura Krueger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."

Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250 (sic). Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.