Are You Aware Now?

It's the final day of Autism Awareness Month and I got an email today from my stepsister with some nice news. Her employer does one of those pay-to-wear-jeans-to -work things and they give the money to different charities, as nominated by their employees. Well, she nominated Autism Speaks and it got picked for the month of May! That's not just good for Autism Speaks, it's good for raising further awareness about autism. Yay Molly!

In other autism-related news, I found out through my employer (until the end of May) about a new program that is being offered to Minnesotans insured through Medica for children with ASD. Starting July 1, families referred into the program will actually get a case manager who will help locate and coordinate their children's autism-related services - and they will be covered by insurance! How awesome is that? No, we're not insured through Medica (and even if we were, Owen probably wouldn't qualify for the program), but I'm just happy for the families that are.

It is just completely wrong that even if you manage to find the right resources for your child and then actually manage to get a spot in the program (likely after waiting months on a list), you might also then have to fight with your insurance company to cover the costs. This is a small step in the right direction and I hope more insurance companies will follow. Yay Medica!

And in my last bit of autism news for the day, Autism Speaks finally scheduled our Minnesota Walk Now for Autism Walk (the one where we actually walk). It's September 20. I'll be starting a team - watch for more info if you're interested in walking with us (or pledging us to walk). Yay us!

Hittin' the Books

I appreciate all the notes of concern and/or encouragement re: my last post -- you guys are sweet and say all the right things. Thank you.

Onto my current indulgence: books. (and Leinenkugel's Summer Shandy, but maybe that's for another blog...) Now that my boys are almost FIVE (how did this happen?), I sometimes actually have time to read again. And not just children's books and the occasional magazine article. Sometimes I find myself reading entire chapters of books before I hear my boys fighting over whose turn it is to do whatever. It's amazing.

So I thought I'd share two book recommendations:

I just finished reading "Mamarama: A Memoir of Sex, Kids and Rock 'n' Roll" by Evelyn McDonnell. She's a riot grrl rock critic turned mama in Miami. I actually found much of the book difficult to get through partially because of her ego and partially because of mine...as in, I wish I could say I had been the music editor at the Village Voice and that I'd hung out with Throwing Muses back in the day. Still, it's a decent momoir (is that what they call those?) in the end.

The thing I hadn't expected is that she actually married a guy with two kids, thus becoming a stepmom to teenagers -- difficult teenagers, too. She doesn't spend a ton of the book on that particular subject, but I still found her perspective interesting - especially this paragraph, in which she's talking about one of her stepdaughters when she was failing out of high school:

"I wish I could have reached her when she was in that dark place. I wish I hadn't said and done things that probably deepened the chasm between us. I think there are some things a parent can't fix; all you can do is stay on the ride and hope you come through the tunnel and out the other side." Let's all breathe a little sigh of relief for that.

I am now reading Anthony Bourdain's "Kitchen Confidential." I know it's old, but I just finally got around to it after Tivoing his show forever. I LOVE it! I don't want to do anything but read it! In fact, I'm going to end this blog soon so that I can go back to reading it. It's great.

And thus concludes Reading Time with the mama/reality-TV-addict/wanna-be-chef. Who knows what I might read next?

Burning Desire

Today brought the realization of two things I've been anticipating for a little while now:

1) The doctor (mostly) confirmed that I have an ulcer. Or, at least that's his best guess. He did casually ask, "There's no history of stomach cancer in your family, right?" Uh, I really hope not since the only test you've performed was to push on my abdomen for 10 seconds. So I'm on the Prilosec for four weeks to see if the constant punched-in-the-gut feeling subsides. I was hoping he'd prescribe a distant boarding school for a certain 16-year-old...no luck. At least now all my whining about the proverbial ulcer I was getting turns out to be legit.

2) I quit my job...the leave-the-house one. When I left work last week, I didn't know I was going to do it. I mean, I knew I'd quit someday, but not today. But then I had a bit of an epiphany over the weekend. It was the combined effect of a tidal wave of well-paying freelance work and my therapist calling me on the fact that my fear of failure causes me to throw obstacles in front of the things I want in life. You see, it's easy to justify not having time to even attempt to write that ever-elusive book if I'm busying myself with a job at a non-profit, a steady stream of freelance work and the raising of my children. Nevermind the Judy Blume-types who spend each free second of their day holed up at a keyboard, making their dreams come true...my fear wins out every time.

I want to note here that although this was a good move personally, quitting this job was not fun. There was no sense of triumph like when I left corporate America. I really like my co-workers (and I really like having co-workers) and I feel like I'm jumping ship at a very inopportune time for them. Normally, I would have let this guilt pressure me into staying several more months - not today. It was hard and I felt really bad about it, but I did it and they were sad but understanding.

So here I am. A hole burning in my stomach and a vast landscape of untouched ambition sprawled out ahead of me. There is a long journey ahead...I'm bringing a lot of Tums.

Over and Over Again

Lately my ups and downs with the teenager have been so frequent that I find myself swinging from hopeful to fed up in mere seconds. I manage to keep up a good poker face with him, as I'm trying not to reinforce his idea that the world actually halts on its axis every time he has a temper tantrum.

However, my anxiety and frustration has to go somewhere (and no, I don't think you'd keep reading if I dumped all of it here.). I'm considering creating some sort of "on call" system in which each of my closest friends get assigned a day and on that day, they have to take my freakout calls. Because really, this would more evenly distribute the weight. OCD? Maybe. Practical? Always.

It can't last forever, right? Right?

Puts a Smile on My Face

I've mentioned it, but I thought I'd share with you the depressing-yet-undeniably-uplifting goodness of Mike Doughty's "Fort Hood," or, as I like to call it, my own personal Prozac:

Batter Up!

I recently joined a softball team - this runs counter to my entire non-athletic persona. Maybe stranger than me actually joining is that someone asked me to join...perhaps they were being nice and thought I'd say no...anyway, I joined the Brave New Workshop Skirt Turtles. (as you can tell by the name, we are total bad asses)

To be honest, I did it entirely for my boys. They think baseball (and softball, by extension) is one of the greatest things of all time. They are Sid Hartmans in the making - only right now they provide the play-by-play in question form: Who is batting? Why did she miss? Did she get a strike? Is she out?

Yesterday was my first game as a Skirt Turtle. My last softball experience was in 8th grade and I only remember being hit in the face while trying to catch a ball in the outfield. Good times. But I played. I even hit the ball twice, although I hit them both right into the other team's mitts, so I never made it to a base, but oh well. 

If all goes well, I should be able to continue to hide the feelings of fear and inadequacy that seem to be triggered when a ball is coming at my face...or at least not breakdown in tears. 

It's all worth it to hear my little cheerleaders on the side line. If only they could sub in for me.   

Sleepy

I am so very tired. That icky tired where you snap at the kids even though they really aren't being any more whiney than usual, it just seems to be a lot more grating today. 

I think I might have gotten 5 hours of sleep last night. Usually, I try to get at least 7 if not the heavenly 8. The first 4 were easy - I went to bed feeling like crap thanks to this mysterious stomach ailment that plagues me at random intervals...it's probably the ulcer that I am positive the teenager has been burning into my gut over the last 3 years - but then my husband came home from his show at 2:30 a.m. and made just enough noise to wake me up before collapsing into a deep sleep right next to me. Thanks, sweetie.

The next 4 hours were spent obsessing in that half-asleep way where you think you've thought of something, only to not be able to recall what it was you were thinking about. Again, the teenager factors in heavily here. Will he turn himself around before the end of the year? What will we do with him this summer? Will he ever drive again* or will I be stuck shuttling him around like a little kid for the next two years? Did we make a mistake? Are we being overprotective? Are we being irresponsible?

I'm sure I thought of other things, too. My little boys, my job, the guy who was on Oprah yesterday talking about finding job satisfaction...

Then the sun came up and four little feet came pattering down the hall. Though I tried to sleep through "Word Girl" (Have you seen this show? I kind of love it.), I knew I'd have to get up. And here we are. And I feel a little better now even though I haven't had any Starbucks. 

Happy Saturday.

*I'll skimp on the details here, but the gist is that we yanked the keys for chemical-related indiscretions.  

Out to Sea

We continue to ride the wave of teen angst and irrationality. Well, I'd like to think we're riding it...coasting along on top, ready for the next big swell...but it's more like we're dog paddling, hoping to get to shore before we drown. 

Sometimes the water is calm. Today, it all seems just a little more manageable. Like it really won't go on forever...I see that glimmer of hope that so often gets obscured by the chaos. 

I watched Oprah last night (on Tivo) and she was talking about wastefulness. She profiled a family with three teenagers who all have plasma TVs and computers in their bedrooms, cell phones, iPods, closets full of unworn clothes - you know, pretty much everything. They didn't say, but it did not appear that any of the kids had jobs. The point of the show was to see if they could go without all of these things for a week, but what struck me was how much easier it probably is just to give your kids everything and just not think about it.

Sometimes I wonder if all the work we put into trying to teach integrity and responsibility is even worth it. So far he isn't demonstrating much of either. Yes, of course I know it's the right thing to do...I think what I'm wondering is, Why does the right thing always seem to be the hardest thing? 

There are days when I just want to surrender, to give in, to stop worrying about instilling values and just let him do whatever the hell he wants. I don't want to be the bad guy. I don't want to say no anymore. I just want to live my life and say to hell with parenting. I think this might make us all very happy for a moment...unfortunately, appeasing him at age 16 does not translate to helping him lead a happy life for the next 80 years. And I know that. And I can't stop knowing it. And so I can't stop caring what he does and who he becomes. 

So we keep on paddling.

The Want

I feel like I'm slacking on this whole Autism Awareness Month thing - I think I've been writing about it less because after nearly two years, it sends fewer shockwaves through our family system. Really, it's just part of our daily experience, so it doesn't stand out as much. Like, I don't blog a lot about my boys' obsession with They Might Be Giants podcasts either because it's just sort of part of our day-to-day routine. 

Okay, here comes the confession...I feel a little bit guilty sometimes drawing attention to our story of autism because Owen is so high-functioning. Don't get me wrong, I am thankful every day that he is doing so great, but there are so many children and families fighting much more difficult battles and I don't want our story to dilute the urgency of their situations. 

My baby can talk, he can tell jokes, he can read and write and add three-digit figures. He's an Uno champion. He can sing. He gives hugs and kisses. And he has autism. I wish he didn't have it, but not so much because I want him to be different (I like him just fine, thanks)...because I don't want him to be treated differently. I don't want anyone to place limitations on him.

But I want more than a world where his differences are valued and supported. I want answers. I want them for us, but I want them even more for the millions of children who are locked inside themselves, unable to communicate, unable to make sense of this insane planet. And I don't just want an explanation, I want solutions. I want to help these kids. I want them to live their fullest lives on their own terms, not the terms of some mysterious disorder. 

I want other people to want these things too. 

If you want to learn more about autism, visit Autism Speaks. 

This Too Shall Pass

My therapist tells me I've gotten much better about putting things in perspective. This wasn't something I knew I was working on, but apparently I did it anyway (now that is a good therapist). 

Unfortunately, when it comes to the teenager, "putting things in perspective" feels a lot like lowering my expectations. Now rather than fretting about him not getting into college, I tell myself that he can always go later. Or that in "real life" (as in, post high school), nobody cares whether you got straight A's or just barely scraped by...well, no one except those college admissions officers....And at even lower times, I remind myself that you don't even need a high school diploma to be a plumber or a welder or a number of other honest professions that pay a living wage. 

But I know that where the perspective really comes in is knowing that as long he survives this horrible self-destructive phase...as long as he can just get through it, he is going to be okay. And I believe that. Even when I see him choosing the hardest, most dangerous path, I believe he will be okay...eventually. And while it doesn't stop me from worrying or wishing it could be easier, it does help me see the big picture. And the big picture is looking a whole lot prettier than the snapshot of our current situation.

Judgement Day

Yesterday was kindergarten assessment day. The boys have been registered for kindergarten since February, but apparently they put the assessments off until later...seems inefficient, but I'm pretty sure "inefficiency" is one of the public school system's values.

I thought we'd sit down, I'd meet the teacher, she'd ask me some questions about each kid and then she'd quiz them on their letters and numbers. It wasn't quite so chummy. The teacher asked Aidan to come with her without even introducing herself, then brought him into a room with a poster saying "Respect is not a gift. It has to be earned." Really? How might my 4-year-old earn your respect? I know I'm very cynical when it comes to the school system, but it seemed a little inappropriate for a kindergarten setting.

So anyway, Owen and I sat in the hall for 15 minutes until it was time to switch kids. 20 more minutes passed and the teacher emerged to say, "Sorry it took so long, we went through all of the first grade words as well." I'm glad the kids proved their super-geniusness all on their own, but had she bothered to have a 2-minute conversation with me in advance, I could have told her that they both already read beyond a first-grade level. Her only other comment was that Aidan might have trouble sitting still in class...well, at least he's got something to work on.

Let's just say I do not hold high hopes for next year in terms of intellectual development. The good thing is that the kids don't know they should be bored by spending an entire week on one letter of the alphabet. I am looking forward to seeing how Owen does in the classroom with only the support of a para. Ironically, the only pull-out service he'll get next year is social skills. The goal, of course, is that he will no longer need special support when he gets to first grade, but my own quest is to figure out whether he can successfully learn in a system designed for neurotypical kids...really, that's my quest for both of them.

It's What You Give

I said I wasn't going to, but then I did it anyway. I watched "Idol Gives Back" last night. Now, I don't want to imply that I'm not obsessed with American Idol (I am), but I like the sing-eliminate-sing-eliminate format...I'm not such a fan of telethons. 

I avoided the whole thing last year, but as most of my regular shows have ended for the season and it wasn't yet time for the new Top Chef, I thought I'd just take a peek at the fluff-meets-substance extravaganza. After (mostly) watching all 2.5 hours of it, I'd have to say it was decent -- and you can't argue with the oodles of money it raised for really good causes. 

I'd much rather have the youth of America spending their allowances trying to end the AIDS pandemic than buying another Miley Cyrus CD. And yes, Miss Miley was in the house last night and her plasticity as both a performer and "musician" was painfully obvious next to the likes of even Snoop Dogg, let alone Heart.

So I guess, good job American Idol. There's something to be said for leveraging our country's obsession with celebrity to make a big difference for people facing real challenges...maybe next year it could be compressed into an hour? 

Manhattan, please

I am meant to be in New York City this weekend. It is my destiny...or should be, anyway.

Not only is my talented writer friend Larry opening his very first off-Broadway production, Umbrella, which I think is one of the coolest things ever (The fact that he has a real off-Broadway show, I mean - I haven't had the opportunity to actually see the show itself, though I'm sure it's fabulous.)...but April 13 is the "Night of Too Many Stars," the benefit for autism hosted by Jon Stewart.

I want to show my support for both events. Unfortunately, I lack a plane ticket and the $500 ticket fee for the autism benefit. Damn. What I need is a corporate travel sponsor...

On a related note, I just happened upon this little article about the "Night of Too Many Stars" and winced when I saw this sentence: Autistic children are unable to communicate and understand, leaving them incapable of functioning normally in the world; even playing with other children can be impossible.

Ummm...not quite accurate (and a bit fatalistic, yes?). So I posted a comment saying so and within minutes, got an email from the writer apologizing and saying she would add the word "severely" to the beginning of the sentence to clarify. Ok, so it's not what I would have written and it stills seems a bit harsh to me (and really, aren't we learning that many of these kids do understand?), but I was still impressed with the response time and the willingness to make a correction.   

I Don't Need to Fight to Prove I'm Right

We were driving home from our super-fantastic visit to Adventure Peak -- the indoor playground my boys are finally old enough to roam free in while I read a book(!) -- when Aidan says, "You know what? The hardest part of doing a flip is getting your legs over your head." You mean, the flipping part? I did not say.

Since pretty much all that is on my mind right now is how and when our own personal teenage wasteland will evolve into maybe more of wild meadow (Have I mentioned I don't do well with metaphors? I fear this will prevent me from ever writing a novel.)... I thought my little truth sayer had a good point:

The hardest part of raising a teenager is the parenting part, what with all the boundary-setting and irrational hostility. If we could just figure that part out, we'd be set. So simple...in that impossibly difficult sort of way.

I Should Know Better

Today is a beautiful day. It's the most beautiful day we've seen here in the Twin Cities for probably 6 months.

The boys and I are home today, so I think, "We should do something outside!" And since our yard is a mud pit and I am uncreative, I decide we'll go to the zoo, where we are members, which means it's a FREE, family-friendly, outdoorsy activity. The perfection of it should have stopped me in my tracks...

You know why you have so little interest in the above photo? Because it's a photo of a line...a line that stretched out to the parking lot. See that MN Zoo sign in the distance? That's the door. Inside the door is where the line usually forms.

Truth be told, I took this photo on our way out. On our way in, we waited in a slightly shorter line, but it made no difference, the place was, ahem, a zoo. People everywhere. Strollers everywhere. Plus, half of the outdoor trail is under construction and the tiger exhibit was CLOSED. As in, you can still go to to place where you would normally see tigers, but then you'll just be staring across an empty tiger habitat until you notice the small sign stating that the exhibit is closed. (Where do they put the tigers?)

Owen was slightly agitated by the abnormal level of chaos and Aidan was broken hearted about the outdoor snack stand being closed (you'd think we went to the zoo solely for the snacks, really), but I think I was crabbier than both of them put together. I just wanted to take a nice, weekday stroll around the grounds, you know? Not wade through a sea of toddlers and grandmothers. I was trying to do the good mom thing! Apparently so was the rest of the metro area. 

Next time I'm letting them loose in the mud pit while I sit on the porch and read a book. 

Going for the Gold

I have officially begun planning the boys birthday party. It is still two months away and already on track to be one of the tackiest birthday parties ever to be thrown by two 5-year-olds. 

You see, this is their golden birthday (I don't even know who explained this concept to them) so they have decided on a gold theme -- sensible, right? Gold invites, gold balloons...I'm going to see if I can wrangle a gold cake. Think kinder-disco. 

I've decided that gold decor is better than requests for lavish gifts, which I think is customary for most golden birthdays...though I wouldn't really know, as I was only 4 on my golden birthday.

And speaking of my birthday, I'm creeping into planning mode for that as well. My big day is the day before the boys' big day, so advance planning is mandatory unless I want my birthday to be forgotten entirely. (I don't, although people keep telling me I will someday.) Last year I planned a very elaborate affair for the big 3-0 so I said this year would be no big deal...only as it gets closer, I find myself wanting to come up with that perfect idea that would be fun, but not expensive, and unique, but not a pain in the ass to execute. Ideas? Please share. 

More Than Words

I wish I had composed something as beautiful as today's Autismville blog in honor of World Autism Awareness Day, but alas, I did not. 

I could comment on Jenny McCarthy's editorial on CNN.com about her son's "recovery" from autism...I could say what a disservice I think she's doing for her son and for parents of children with autism everywhere, but, well, I think today should be about more positive things. 

So in lieu of beauty, let's have reality. In reality, I got what I think is pretty good news today. I met with the private speech therapist that evaluated Owen last week. Extra speech therapy had been recommended at one point more than a year ago and I only now followed up on it since we just got real medical insurance that actually covers things. 

The therapist showed me his test scores and they were all well above average -- so high that she's not recommending therapy. In fact, she showed me where his scores would have to be for him to qualify for speech therapy by the school district's standards and I am now armed with several new questions for our IEP meeting next week.

She said that because he is so intelligent, he's probably thinking faster than he can articulate, which is why he sometimes reverses words and why sometimes it's hard to figure out what he's trying to tell you (we can understand his words, but sometimes they don't make sense). She went on to say what a joy he was, adding, "It's so nice to see a kid who can actually TALK." A no-no for a speech therapist, I'm sure, but funny nonetheless. 

So hooray for Owen! For once, he's in the 82nd percentile for something other than the size of his noggin. That's worth celebrating, I think.

We Rock!

Happy World Autism Awareness Day!

Just a quick note to say that Team Owen has raised $2055! That is more than double our original goal.

THANK YOU!

More later...

Scientifically Unspecific

Though autism isn't actually on my mind all of the time (see previous post for what seemingly occupies the rest of my thoughts), it seemed wrong to kick off Autism Awareness Month without a blog related to autism.

So, I'm sending you over to read this essay on the Babble site, by a mom whose son has PDD-NOS, one of the disorders on the autism spectrum. 

My boys have a friend diagnosed with PDD-NOS and I think his mom struggles a bit because the diagnosis literally means that the development disorder is "not otherwise specified" (NOS). What are you supposed to do with that? As if autism wasn't mysterious enough...how do you treat something so vague that they actually put "not otherwise specified" in its name?

I suppose you do what we're all doing and try to follow the "experts'" suggestions while trying to love your kid so much that no matter how cruel the typical-brained world might be, he (or she) will be okay...never "normal," but always okay. 

Let the Sunshine In

This is what April looks like here in Minnesota. I am not happy. 

Okay, so I'm not surprised either, it's just that I'm already battling this teenager-induced semi-depression and I just don't need a foot of snow piled on top of my melancholy. Although it does provide a convenient excuse to stay inside and do nothing.

Seriously, Mike Doughty's "Fort Hood" is like my Prozac at the moment...if I had an ounce of musical ability, I'd lock myself in a room with stockpile of Cheetos and beer and compose the decade's greatest collection of emo-ballads. 

All that being said, things are actually on an upswing in the adolescent department. I credit this partially to all of his friends being out of town for spring break, partially to a well-timed job offer from my husband's friend (thank you, Mark), and maybe a teeny-tiny bit to him wanting to do better...maybe that's just wishful thinking, but hey, sometimes wishful thinking is all you've got.

Now if I could just stop myself from dreading the impending downswing, maybe I wouldn't feel so much like taking the next flight to Mexico and leaving all the developmental psychobabble up to everyone else...more wishful thinking? Perhaps.