Thursday, June 10, 2010

Autism, Parenting, and the Importance of Attitude

Shannon Des Roches Rosa

Consider the same day, the same circumstances, the same children, the same parent - but filtered through two different attitudes:

Leo and I had the worst day ever.

Leo and I had the best day ever!

Why does Leo always wake up so early? His sisters sleep until we shriek at them to get up, like self-respecting children should. I'm so irritated that he's sometimes wet in the mornings. He's never going to be fully self-sufficient.

Leo got up at 6:30, but that's certainly better than yesterday's 6:00, and then it was his dad's turn to attend to our early riser. And how amazing that Leo now spontaneously asks to go to the bathroom when he gets up, and is frequently dry. If you'd told me three years ago how well he'd be doing with his self-care at age eight, I wouldn't have believed you. He really will become a wonderfully self-sufficient young man if he maintains this steady progress.

None of his clothes are on correctly. His shirt is on backwards, and it's tucked into his underwear, and THOSE are poking out above his pants. And nothing matches. Good thing no one else can see him -- how embarrassing.

He dressed himself completely! All I have to do is say, "Leo, get dressed, please." He takes such pleasure in choosing his own clothes, can get everything out of all the different drawers (and shut them) by himself, and then puts everything on independently. I no longer even have to be in the same room. I remember the years he spent acquiring the motor skills and learning the individual steps required to put on pants, sock, and a shirt -- now he gets dressed so fluidly. He even understands what "Dude, your shirt is on backwards" means, and how to fix it. What a thrill to see him succeed! Once we help him fine-tune some garment positioning, he'll be set.

I can't believe he has a six-week break between summer and regular school, with no daytime support. This sucks. I'm going to be exhausted.

His schedule is usually so full that it's hard to shoehorn in the activities we really enjoy doing together, like hiking and going to the beach. We've got the time now, so let's pack in the fun while we can! I really need to be careful about getting enough sleep, though.

Big sister Izzy's friend Jodie wants to spend the day with us. I'm worried that Jodie will think Leo is weird, and gossip about him to the other kids at Izzy's school. That could really hurt Izzy, and Leo too.

Jodie wants to spend the day with us! I used to worry that Izzy's friends would be uncomfortable hanging out with Leo and his autism, but that's obviously not the case, most of the time anyhow. The more they hang out with Leo, the more they'll understand him and be comfortable around him, and hopefully stick up for him -- and Izzy, too.

Great. The beach is completely overcast, and it's freezing, and where are the paragliders? My friend said there would be paragliders.

I can't believe I've never been to this beach before. It's so beautiful, and hardly anyone is here! The kids love running down the gravel paths, and looking at the birds and waves and seals. No paragliders, though, hmmm. Perhaps I should have checked the wind report first. Oh well, next time -- today we'll have plenty to do hiking these easy trails, and exploring the beach.

Walking Back from Mussel Beach


Oh, crap. There's no path from the trails to the beach. Do we have to climb down all of those rocks? Those are really big rocks.

Excellent, we get to clamber down nice big rocks to get to the beach! Leo loves bouldering. He has such a great sense of his body, about where to put each footstep and place his hands, and this is exactly the kind of activity that reinforces those skills. Another opportunity for him to feel successful!

Bouldering to the Beach


Oh, no, the sand is wet and clingy and Leo's going to get it all over himself!

This is really nice soft damp digging sand. Leo loves it, and doesn't even need tools. He really likes the way it feels -- what a great sensory experience.

Playing in Nice Soft Sand


I guess we'd better leave and get lunch before everyone's blood sugar bottoms out. I wish Leo ate more than six things. Sigh.

Lunch. I love lunch! Too bad we have to leave the beach, but at least we're really close to a mall with both a Rubio's fish tacos joint, and a good bakery. Leo can eat a croissant while the rest of us plow through tacos, and everyone will be happy.

Time to get Leo's little sister Mali from camp. Don't we ever have days without complicated schedules?

Time to get Leo's little sister Mali from camp. I'm glad she's going to camp this week; she loves having an activity just for her and her friend Lucy, and the big kids and I are getting to do big kid things together.

(Leo proceeds to melt down in the recreation building lobby, and starts screaming and punching and kicking me.)

What the hell is wrong with him? We come here every day! He is so unpredictable, having a kid with autism is so hard and so unfair, but at least now all those other camp parents can see how hard it is for me. I hope they know I don't deserve this, that this isn't my fault.

Oh, Leo! My poor overwhelmed guy. I don't know what set him off, but I better get him back to the car so he doesn't hurt himself or anyone else. Thank goodness my friend Jennyalice is here (thank you thank you), and can fetch Mali from camp while I try to soothe Leo and figure out what upset him. I hope no one thought he was just being rotten. And our friend Ellen showed up with a bag of Leo's favorite things -- straws! That certainly distracted Leo and helped him feel better. Maybe he's just not in the mood for so many outings today. Maybe his loose tooth is really sore. Maybe he didn't get enough to eat for lunch. We'll figure it out. But I wish he could tell me why he's so upset. I know he wishes he could tell me, too.

Oh, great. Jodie saw Leo at his worst. She's probably going to tell everyone at Iz's school all about it.

Well now, Jodie's seen Leo have a really hard time, but afterwards we talked about why he might be upset, about how this almost never happens anymore and when it does there's usually a really good reason even if we don't always know what that is, and she seems to get it. She was with Leo all day, had a good time hiking, climbing, and running with him at the beach, and shared a pleasant lunch with him. She knows that he's a good, sweet kid. She knows that. She knows that.

What the heck am I going to do with four kids now, and Leo still in a state?

I have never been more grateful for access to a pool than I am right now. All I had to do was tell Leo we were going to swim, and he calmed right down. The girls are excited, too. Hurray for summer!

Swimming Every Summer Day


What an awful day. I can't wait to vent about it. People just don't know how hard it is to be Leo's mom.

Even though Leo had that meltdown, I still consider this day a success. I can't wait to go back to that beach when the paragliders are launching. Leo will be mesmerized, I just know it. I love that boy, and I love this area, and I love our house, and I can't believe how lucky we are to live the life we do.

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So...

Which parent am I?

Which parent are you?

I used to indulge myself in the italicized bad attitude parenting, back when I thought parenting a kid with autism was a role with only two flavors, both of them Martyr: the Complainer, and the Stoic. But through my years of blogging and community involvement, I have encountered too many excellent positive role models to not know better.

I now consider parenting a child with autism as much an attitude as a role. I try as hard as I can to be that second parent, the chirpy and occasionally snarky optimist, the mother who loves and respects her child and his strengths and efforts above all.

Attitude is a choice, you know. Choosing a positive outlook is not always easy, and can be especially difficult if you have no good role models, and are teetering on the edge between challenge and true tragedy. But if you find the right people to inspire you, to stomp on tiny violins and refuse to let pity join the party, then choosing positivity gets easier.

I'm writing about attitude because we hear too many stories about autism parents who have been conditioned into negativity, who have no community to support or understand them, or who can't let go of the children, marriages, or lives they thought they were supposed to get. Some of their stories end in tragedy.

When I read about those parents, I wish more than anything that they could come join me and my friends at our weekly Bad Moms' Coffee, so they could complain as much as they want to among people who get their kind of extreme parenting challenges -- but who then move on despite, not powered by, any disappointment and emotional suckerpunches.

Autism parents need communities that will truly support them and their children, formed by partners, parents, and other souls who are tired and grumpy and sarcastic, but also held together by pure white hot child-centric advocacy. We need to help autism parents love and appreciate their children wholly even as they fight for them, and as difficult as their family journeys may be.

While all parents, autism or otherwise, deserve the right to vent lest our heads and eyeballs explode (and then who would clean that up?), when it comes to complaining, I hope we can try to be dabblers, not devotees. And that, if things really do get too hard to bear, we can rely on communities secured by hard-won optimism to envelop us and hold us aloft, until we have the strength to strike out on our own again.

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A version of this essay was originally published at BlogHer.com