Haven't I Mentioned...?

An interesting thing happened as a result of my email and blog calling for donations to Team Owen on Friday. We've not only raised more than $1500 (and counting!), but several people have contacted me to say they didn't know about Owen's diagnosis.

It’s a little weird that people I consider friends didn’t know, but, of course, I am entirely to blame…

When he was first diagnosed nearly two years ago, I wasn’t exactly shouting it from the rooftops. In fact, I was in disbelief. I was scared and unsure and really, really sad. So I didn’t tell anyone – save for a handful of people from whom I couldn’t hide my breakdown.

Then, after doing the research and reminding myself he was still the same little boy, label or no label, I still didn’t tell people, only this time it was a test of sorts…I think I wanted to pass him off as “normal” thinking that if nobody noticed, then he didn’t really have it, or some such nonsense. I know it wasn’t the healthiest of approaches, but my heart was in the right place; I just didn’t want anyone to place any limitations on him.

Slowly but surely, I accepted the diagnosis and I did start telling people, but it wasn’t like, “Hey! Owen has autism, how are you?” If an opportunity didn’t present itself, I didn’t make a point of bringing it up. I just didn’t want people feeling sorry for me or for him.

Which brings us to the present, where apparently an opportunity still had not presented itself with a few of my friends and acquaintances. So I am all the more thankful for World Autism Awareness Day and Autism Speaks, because they gave me the opportunity to, essentially, shout it from the rooftops: MY SON HAS AUTISM!

And while it’s not what I would have wanted for him, it’s part of who he is. And I want to know why. And I want to know how to help him learn and live to the best of his abilities. And when he is old enough, I want to give him an explanation for his quirks. And I want it to be better than some vague disorder that people don’t really understand…I want him to have answers. He deserves that. Thank you for helping make that possible.

Better Than Expected

You guys are awesome! I haven't quite deciphered how Autism Speaks actually calculates the total donations raised for a team (I can't get the numbers to add up -- if you know anything about this, leave me a comment), but according to Team Owen's page... 

WE'VE EXCEEDED OUR GOAL! And we did it in 24 hours!

It's really heartwarming to know how many people care about Owen and about supporting this cause. And as a person who isn't always great about asking for help, it's incredible to see how quickly and generously people respond when asked.

What I'm trying to say is THANK YOU. It means a lot.

For those of you still wanting to donate, please do! Visit the Team Owen page and join our team, pledge one of our members, or start a team of you own.

Team Owen Ranks!

Good news - as I'm writing this, Team Owen has already raised $645 and is ranked 4th for team donations. FYI, the team in first place also had a $1000 goal and they've raised $2720 so far.

Thanks to all who responded so quickly and thanks in advance to those who are still planning to donate. Remember, you can join the team or just pledge a donation to one of the team members.

In other autism-related news, CNN posted this interesting essay by a woman who was only recently diagnosed (at age 48) with Asperger's Syndrome: http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html

Go Team Owen!

Be the Change

In case you haven't heard, April 2 is World Autism Awareness Day. That means you'll be be hearing a lot about autism in the next few days -- and hopefully weeks, as technically the entire month of April is Autism Awareness Month.

Here's the deal: 1 in every 150 children has an autism spectrum disorder. There is no cure, but treatment has been shown to help. 

If you aren't personally affected by autism, I'd like you to imagine the following: You've been told that your precious child has a brain disorder. You've been told that it affects every person differently. And you've been told that it's lifelong. Then you're told that no one knows what causes it. 

Autism is estimated to affect 35 million people worldwide and we have no idea what causes it. We need answers. To get those answers, we need more funding for research. Here's where you come in. 

Autism Speaks is raising awareness and money for autism research with its "Walk Now for Autism Virtual Walk." It's all the fundraising without all the pesky walking. In honor of my little genius who happens to also have autism, I have started my own team, appropriately named "Team Owen," and I'm hoping we can raise $1000. It's not much, but it's something. You can join my team or start your own. 

Please pass this on to anyone else you know that can help. Even if they don't give, at least you'll be helping to raise awareness. And as my autism mama hero Judith says on her blog, Autismville: "Awareness brings understanding. Understanding fosters change."

These kids can't raise the money themselves, people. Let's go. 

Diplomacy Amid Chaos

If I could only use one word to describe what having a teenager - or at least having our teenager - feels like, I'd say "insane." I feel insane.

One moment I'm ready to ship him off to a third world country (don't you wish you could do that?), then the next I'm sympathizing with the beating your self-esteem takes during the teenage years, then a second later, I'm ready to cut him out of the will.

If that doesn't seem crazy enough, I found myself doing the unthinkable yesterday: I called his birth mother (his negligent, abusive and thankfully mostly now absent mother) and thanked her. Because when he ran to her (and his maternal grandmother) a few days ago looking for someone to help him get around our rules and our boundaries, she sent him back home. And regardless of her motivations or her complete failure as a parent otherwise, it was the right thing to do. In fact, it might just be the one and only positive contribution she has made to his life. (I refrained from mentioning that.)

It's not that I actually think she has had some kind of epiphany about her limitations...no, I consider it to be more like strategic diplomacy. And no matter what form it takes, I'd rather have her working for us than against us.

If only the teenager knew the way his chaos has brought us all together...he'd totally hate that.

Please Hold

While the teenager situation appears to have plateaued for the moment (and if we’re being positive, I’ll take a plateau over a continued descent any day), my little Owen has mysteriously developed an aversion to school.

He used to be all gung-ho about it – he’s even been known to throw his extra two days of school per week in the face of his more-typically-but-still-exceptionally-brained brother, who has developed a rather intense jealousy over the possibility that Owen might be learning more than him. But for the past week or so, it’s been nothing but “I don’t love school,” and “I’m not going to school.”

So I’m trying to figure out what’s bothering him, because my little concrete-thinker doesn’t tend to make things up, nor does he manipulate – if he says he doesn’t want to go to school, there’s a reason.

I tried speaking to his teacher about it today. She didn’t seem to get that I was trying to determine what had caused this attitude switch. Her assumption was that there really wasn’t any explanation, so why not just try to incent him to go to school with stickers or some such nonsense…the kid has gone to school happily for two years, so it’s not like this is a new concept he needs coaching on.

She also suggested maybe a social story* would help but then added, “I’m not very good at writing those, but I could try to put something together.” You’re the person charged with teaching children with autism and you can’t put together a social story? But again, that assumes that he’s somehow having trouble with the idea of going to school, when I still think something at school is bothering him.

All of this serves to further my belief that my children and I would all be better off just traveling the world and learning as we go. I am all for education, but the more I experience the public school system, the more I think that it more closely resembles a holding cell than a place to learn. I just don’t ever want my kids to confuse obedience with intelligence. I don’t want them to get bored and mistake that boredom with school for a disinterest in learning.

If I could just travel back in time and become an heiress of some sort, we’d be all set...Maybe I can get Owen into Physics; he'll have that whole space-time continuum thing cracked before he hits middle school.

*For those not entrenched in autism jargon, that’s a narrative exercise commonly used to help kids with autism learn what to expect in a situation

With Courage to Endure

I often find myself marveling at the way that my teenager is able to consume exponentially more energy than my twin preschoolers. Nothing my little boys can throw at me – autism-related challenges included – empty me the way the teenager does. How do you convince someone who is hell bent on self-destruction to change course?

Sure, there’s the guilt. Where did we go wrong? What should we have done differently? But at a certain point – and with the blessing of various mental health professionals – we’ve had to face the fact that we have done our best. And I don’t mean we’ve done our best in the way that an absent parent who sends a check once a year might proclaim, “I did what I could, I don’t know why you don’t love me!” No, I mean we have worked at it.

We’ve done our homework, we’ve devised plans, we’ve seen therapists, we’ve focused on discipline vs. punishment, we’ve tried loving him through it…I won’t say none of it’s worked – I suppose we could be in a different place if we hadn’t done those things – but I can’t give any of them ringing endorsements, either.

What I’m trying to say is that I’m just at a total loss. I’m spent. I want to be strong and keep going, but sometimes I don’t know if I can. It’s too hard. And there it is, the guilt of even saying that out loud…because I’d like to believe that when it comes to my kids, nothing could ever be too hard.

Of course, whether or not it’s too hard really makes no difference. It’s a little like childbirth in that I simply have to keep going no matter how excruciating. Because even though it feels like I’m working against a ticking clock, like my window in which to help him become a functioning person is closing in on me – and despite all of his sentiments to the contrary – I know that he still needs us. And that fact just hangs there in the silence between us, with none of us knowing where to go from here.

Small Talk

I braved our spring blizzard this morning to go to Target. Thanks to our Vegas vacation, we were not only out of groceries, but we hadn’t yet procured any of the supplies needed to play Easter bunny on Sunday. Other than being especially easy because my husband was home with the kids, the shopping portion of the trip was uneventful. Then I got to the checkout.

“You’re doing your Easter shopping late,” the cashier, an awkward white male in his early twenties, said as he bagged my Cadbury eggs. I gave him a polite smile and shrug. He continued with “You didn’t want to get it done earlier?”

Well, yes, I wanted to start months ago by compiling a collection of toys small enough to fit inside plastic eggs and then going to a gourmet chocolatier to have special chocolate bunnies crafted in the likenesses of both of my boys…but then I remembered that Easter is virtually meaningless since we don’t subscribe to organized religion and my boys would be just as happy with M&Ms and a copy of “101 Dalmations.” And by the way, you clearly don’t have kids, so shut up.

I did not say any of this, of course. Instead, I smiled politely and made it through the rest of the transaction in silence until he did the obligatory, “Do you want to save 10 percent today?” To which I quickly replied – as I always do – “No, thanks, we already have a Target card.”

His reply: “Well then you should have used it.” Perhaps in response to my look of shock, he then added, “You could have earned 180 points.”

Asperger’s, is what I thought. This guy clearly has Asperger’s syndrome. Asperger’s is the highest functioning end of the autism spectrum – to oversimplify, it basically means that social skills don’t come naturally to individuals who have it. Though Owen isn’t officially diagnosed with it (his diagnosis fell slightly below Asperger’s, under the straight-up “autism” criteria), I often think his behaviors, paired with his exceptional intelligence, make it a more fitting diagnosis.

I find myself making Asperger’s diagnoses a lot when I meet socially awkward individuals – men, mostly. I also often wonder whether they know they have it.

True, my unscientific assessments might not always be accurate, but with the rates of autism spectrum disorders in Minnesota being calculated at 1 in every 81 children (the highest of any state), I’m probably not always off base either. And really, I’d rather just give these guys the benefit of the doubt by assuming that rather than being rude, they are just trying to navigate the complicated terrain of small talk. I hope that when Owen gets older, people will do the same for him.

Reality Bites

I have returned from the land of sin and slots, but I am not quite ready to jump back into real life. I was anxious to see the boys, of course, but they weren’t all that eager to return to real life either. Seems life at grandma’s was pretty sweet.

The Great Home Alone experiment with the teenager went just okay, which is to say that the house is still standing and the cats didn’t starve to death. The whole thing looks to have been an 84-hour Warcraft marathon, which is also to say that he’s been deemed not quite ready for further home alone adventures at this point. The problem, as I see it, is that he just doesn’t see the need to function when left to his own devices…

Anyway, the trip was lots of fun. I didn’t win big, but I didn’t lose big, either. I saw some sights, rode in a convertible through the desert in 50-some degree weather, had a single sip of my very first (and very possibly last) green beer, got to play a Showcase Showdown, and laughed a lot…yes, we had fun, fun, fun ‘til the slot machines took my last nickel away.

Now it’s back to reality, where there’s always a mouth to wipe and a call from the attendance office to answer…it’s not as fun as Vegas, but rumor has it that in the long run I will find it more rewarding.

Spaceman

Even as a baby, Owen was a little spacey. He used to just kind of freeze up or withdraw…we used to refer to it as “getting stuck” and this was long before autism was ever suggested. Eventually, I affectionately started calling him “spaceman” and the nickname stuck.

When he was diagnosed with autism just before turning three, this spaciness made more sense. In fact, it was one of the few things that did seem to fit with the diagnosis at first. Nearly two years later, I can see the other characteristics that put him on the autism spectrum – the toe-walking, the lack of eye contact, the sensitivity to sounds, the general sort of quirkiness he possesses – but the spaciness still stands out as the most troubling. Or rather, the thing that I think will give him the most trouble in life.

I suppose you could view his ability to shut out external input and focus on whatever it is he wants to focus on as a gift. And thankfully, in his case, it’s only a sometimes state of being – we get lots of time where he’s just as present and engaged as any almost-five-year-old boy. Unfortunately, the unpredictable bouts of spaciness make school, group activities and, well, basic communication a lot more complicated – for us typically-brained folk, anyway.

Sometimes when he slips into his own little world, it really seems like he’s far away. Like he’s not there.

Last night, when he was supposed to be sleeping, he pattered down the hall to our room and curled up in my lap. I told him he could stay for a minute and tried making conversation. I got nothing back from him, so after a few minutes of silence on his part I just came out asked, “How come sometimes when I talk to you, you don’t answer me?”

And with no hesitation, he said, “Because sometimes I’m busy.”

So he’s there, he’s just busy. Fair enough.

Write On

When it comes to being a writer, sometimes I feel a little bit easy. Like I’m willing to write anything, as long as I can convince myself I’m still making a living writing.

In any given week, I could be working on a speech for a corporate executive, a newsletter for parents of preschoolers, and an article for a magazine. Alright, so that’s not so much an average week, it’s more like this week, but the point is that my writing assignments vary.

I am employed in the non-profit world but my freelance work in the corporate world is what actually pays the bills. I have the words “strategy,” “leverage” and “team” running on a loop in my head. 

What I’d rather be doing is writing articles for national magazines...you know, using my college degree. Unfortunately, that kind of writing tends to be far more difficult to box into the times that I am available to write. It’s also just harder in general, which perhaps is why I find it to be more fulfilling.

But of course what I really would rather be doing is spending my days sitting in the office I designed just for writing (but rarely use) and churning out best-selling novels – or really, just one best-selling novel would be fine, too. I’m not greedy. Of course it's easy to say that that's what I really want to do when I have no intention of doing it. Not yet anyway. I’ll let you know when inspiration strikes.

In the meantime, I will continue selling my wares like the two-bit pencil pusher* that I am.

*Am I keyboard pusher? That doesn’t have the same ring to it.

I Could've Been Someone

I freely admit that I’m a reality television junkie, so it should shock no one to know that I set my Tivo to record the premiere of “Secret Life of a Soccer Mom” on TLC last night. Yes, it’s a bad title, but I thought maybe it was some sort of docu-drama series about being a stay-at-home mom. If I’d actually watched any of the commercials (versus fast forwarding through them), I might have known better.

The premise is this: A mysterious black moving van shows up at your house and you, soccer mom, get inside it without knowing what’s in store. In a bizarre twist, Tracey Gold is waiting for you. Perhaps what’s weirder than the fact that she’s hosting is the fact they don’t treat her as if she’s a celebrity – they never even say who she is.

The former Growing Pains star proceeds to make you feel bad about the career you gave up to stay home with your kids. The implication, of course, being that raising kids is fine, but it’s not like it’s an accomplishment or anything. But wait! Tracey Gold is offering you a chance to BE somebody!

All you have to do is make your family believe that you are going to the spa for a week (you know, like usual) and then Tracey Gold will whisk you away to a job the producers convinced someone to give you on the basis that you used to work in that field however many years ago. I suppose the idea here is that if you fail, at least you won’t have burdened your family with your stupid dreams.

Once you arrive at this job with your camera crew, you will have one week to prove that you can easily pick up where you left off career-wise. Your pseudo boss will then give you ridiculously hard assignments and your co-workers will make it clear that they have no faith in you. Oh, and Tracey Gold will reappear sporadically to show you clips of how incompetent your husband is as a single parent.

At the end of the week, you’ll be carted back home (in the aforementioned moving van) and forced to come clean with your family. Then, if you’ve done well, your pseudo boss might make a surprise appearance and offer you a full-time position…but you have to start Monday. Will you choose to return to your obviously unfulfilling life of children and housework or will you dive back into your career as if being a stay-at-home mom was merely a temporary illness from which you’ve been cured?

Sorry, I won’t be tuning in every week to find out. Although I would like to see the 6-month follow-up show where the moms describe the nervous breakdowns they suffered as a result of making a major life decision in a matter of hours in front of a film crew. Yes, that I would watch.

Vegas on My Mind

In two weeks, I’m going to Las Vegas. Or more accurately, 14 days from this very moment, I will be somewhere on the Strip. Perhaps I will be walking in the desert sun along Las Vegas Boulevard, wondering at the ridiculous architectural spectacle. Or maybe sitting at a Price is Right slot machine, hoping to play the Showcase Showdown…

Whatever fabulous thing I am doing, two things are certain: I will have escaped the frozen tundra of Minnesota winter and I will only be in charge of me (love you boys, but mommy needs a vacation). Add in 24-hour fun and entertainment and it’s no wonder that my anticipation for this trip has reached full-blown obsessive mode.

No matter how many times I visit, Vegas just doesn’t lose its luster. Having already scoured the web and creating an hour-by-hour itinerary for my husband and our two friends (who have never been to Vegas), I have resorted to checking the weather forecast and using the Street View feature on Google Maps to pretend I am actually standing on the Strip outside Caesar’s Palace. Last night I even orchestrated a screening of “Showgirls,” which, in retrospect, I don’t recommend for either entertainment or Vegas travel preparation.

But today I feel that the universe is trying to tell me my obsession is okay. First, I opened the Sunday paper to find that Vegas is the featured destination in the travel section. Then, one of my favorite musicians, Johnette Napolitano, posted a blog all about her recent trip to Vegas! Coincidence? Okay, probably.

Excuse to continue obsessing until that plane touches down 332 hours from now? Absolutely.