my life with autism

People ask me all the time what it's like to have an autistic child. How it affects our daily life, and how I manage to juggle all of Marty's therapies and programs on top of the usual demands motherhood imposes.

Well, I could talk about it for hours. But in the interest of utilizing the few precious moments I have available while BOTH my babies are napping (I swear, that rarely happens), I thought I'd share a couple excerpts from Jodi Picoult's latest book, "House Rules", which revolves around an autistic teenager and the people his autism affects. Naturally, I related most to the chapters written from the mom's perspective, and marked the pages that meant enough to me to leave tear-stains on. I cried tears of joy in feeling like someone finally was able to put words to a lot of my emotions regarding my son's diagnosis, but also tears of sorrow when I realized that this journey is only going to get harder for him.

So read on, friends, knowing that by sharing these words written by someone else, I'm also sharing a piece of my heart for my precious baby boy:

"This is what you can't explain to a mother who doesn't have an autistic child: Of course I love my son. Of course I would never want a life without him. But that doesn't mean that I am not exhausted every minute of the day. That I don't worry about his future, and my lack of one. That sometimes, before I can catch myself, I imagine what my life would be like if he did not have autism. That--like Atlas--I think for just once it would be nice to have someone else bear the weight of my family's world on his shoulders, instead of mine."

"I have carved a life out of doing what needs to be done, because you can rail to the heavens, but in the end, when you're through, you will still be ankle-deep in the same situation. I am the one who's strong, so that my son doesn't have to be."

"Nobody looks into the face of a newborn son and imagines all the things that will go wrong in his life. Instead, you see nothing but possibility: his first smile, his first steps, his graduation, his wedding dance, his face when he is holding his own baby. With my son, I was constantly revising the milestones: when he willingly looks me in the eye, when he can accept a change in plans without falling apart, when he wears a shirt without meticulously cutting out the tag in the back. You don't love a child for what he does or doesn't do; you love him for who he is."

Sigh. That's all for now. I have days that are good and days that are not-so-good. But all in all, I love my son. He's perfect--maybe not according to the world's standards, but he is according to mine.

What it means to be a good mom...

"When did they stop putting toys in cereal boxes?

When I was little, I remember wandering the cereal aisle and picking my breakfast food based on what the reward was: a Frisbee with the Trix rabbit's face emblazoned on the front. Holographic stickers with the Luck Charms leprechaun. A mystery decoder wheel. I could suffer through raisin bran for a month if it meant I got a magic ring at the end.

I cannot admit this out loud. In the first place, we are expected to be supermoms these days, instead of admitting that we have flaws. It is tempting to believe that all mothers wake up feeling fresh every morning, never raise their voices, only cook with organic food, and are equally at ease with the CEO and PTA.

Here's a secret: Those mothers don't exist. Most of us--even if we'd never confess--are suffering through the raisin bran in the hopes of a glimpse of that magic ring.

I look very good on paper. In real life, I have to pick superglue out of the carpet, rarely remember to defrost dinner, and plan to have "because I said so" engraved on my tombstone.

Real mothers wonder why experts who write for "Parents" and "Good Housekeeping" seem to have their acts together all the time when they themselves can barely keep their heads above the stormy seas of parenthood.

Real mothers don't just listen with humble embarrassment to the elderly lady who offers unsolicited advice in the checkout line when a child is throwing a tantrum. We take the child, dump him in the lady's cart, and say, "Great. Maybe you can do a better job."

Real mothers know that it's okay to eat cold pizza for breakfast.

Real mothers admit it is easier to fail at this job than to succeed.

If parenting is the box of raisin bran, then real mothers know the ratio of flakes to fun is severly imbalanced. For every moment that your child confides in you, or tells you he loves you, or does something unprompted to protect his brother that you happen to witness, there are many more moments of chaos, error, and self-doubt.

Real mothers may not speak the heresy, but they sometimes secretly wish they'd chosen something for breakfast other than this endless cereal.

Real mothers worry that other mothers will find that magic ring, whereas they'll be looking and looking for ages.

Rest easy, real mothers. The very fact that you worry about being a good mom means that you already are one."

--Jodi Picoult, "House Rules"
(written from the perspective of the mother of an autistic son)

How in the HECK?!

I know, I know. I'm fired.

I promised new and exciting and interesting blogs, and haven't posted a blame thing. Sigh. It's just that every time I think about writing something, I get stuck trying to figure out what to write about. There are so many thoughts and feelings jumbled up in my giant noggin that it's hard to sort through them. To translate them into something the general public will be able to follow. Not because I'm smarter than the general public--but because I'm CRAZIER.

I guess it's just hard to know where to start. The last year of our lives has been the worst year of our lives. So much has happened that it seems really shallow to just start blogging one day about my kid's adorable new haircut and his brother's giant up-the-back poop explosion. REALLY shallow. But at the same time I don't want to feel like everything I post has to be profoundly amazing and eye-opening and life-changing either. Happy medium, anyone? It's more difficult to find than you'd think.

But here I go again overthinking something that's supposed to be fun and light and a form of release in the midst of my crazy hectic and chaotic existence.

So for now, here's my start. My three-year-old, Marty, is sporting a great new haircut compliments of yours truly. And yeah, it's choppy and not perfect, but he didn't freak out about the pieces of hair falling onto his skin. Success. I'll take it. And Lucas? He's had some gnarly poops lately. We're talking clear-the-room stenches and more loads of laundry in a day than I dare count. But he's happy and he's eating well and handling this whole teething nonsense like a champ. Success. I'll take it.

As I continue to ponder how to sum up these last twelve months without sounding like a totally depressed pessimist (which I only am when woken up prior to 7am), I'm going to try to focus on the little things each day that are making me smile in the midst of all the other crap.

Success. I'll take it.

Gosh, it's been FOREVER.

That OBVIOUSLY goes without saying, seeing as how my most "recent" post was a year and a half ago. Why on earth did we all fall off the blogging train? It's fun and theraputic and a lot less cryptic than the one-line facebook statuses that are supposed to sum up every given moment. So now that some of my peeps are starting to blog again, I thought I'd join in. I've been toying with the idea for--let's see--about a year and a half. I just have so much to SAY.

So visit often, friends, as my blog and I become buddies again. May this be the start of something really really awesomely spectacular.