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 (snicker). 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 Mussel Rock Beach before. It's so beautiful, and there's hardly anyone here! The kids are all loving running down the gravel paths, and looking at the birds and waves and seals, and Mussel Rock itself. 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.

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!

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.

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 lose his shit 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 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. Hey, L.U.S.T. agent Ellen Fitz showed up with a bag of 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 owning a pool than I am right now. All I had to do was tell Leo we were going to go home and swim, and he calmed right down. The girls are excited, too. Hurray for summer!

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 Mussel Rock Beach when the paragliders are launching. Leo will be mesmerized, I just know it. I love that boy, and I love the Bay 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 special needs 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 our children with special needs more an attitude than 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 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, choosing positivity gets easier. If you don't know anyone to emulate, here are a few folks, some who have kids with special needs and some who don't -- and one who's not even a parent -- who stomp on tiny violins and refuse to let pity join the party:
I'm writing about attitude because I can't stop thinking about a recent post, in which an autism mom declared that once autism got ahold of her daughter, her daughter died, and now she can't let go of the girl, marriage, and life she thought she would have.
When I read her post, I wished more than anything that mom could come join me and my friends at our weekly Bad Moms' Coffee, so she could complain as much as she wants to among people who get her kind of extreme parenting challenges -- but who then choose to parent despite, not powered by, disappointment and emotional suckerpunches. Let's hope she eventually escapes from her camp of negativity enablers, and finds a parent community who will truly help her and her daughter -- one with a support web like mine, formed by partners and other souls who are tired and grumpy and sarcastic, but also held together by pure white hot child-centric advocacy. Then, perhaps, she'll let herself love her daughter wholly even as she fights for her, and as difficult as her journey has been.
While all parents should reserve 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.
Comments
Yep
I've been blogging about this a lot lately (http://daisymayfattypants.blogspot.com/2009/07/theyre-lucky-to-have-us.h... ) and am glad to see you giving both sides of it from your own head. I believe so strongly in venting, but I also hate to see wallowing in pity or "no, I don't need anyone, I am a rock" when you know that neither is useful or constructive. I think we're all of us probably pretty danged good parents, and when we turn to martyrdom, it's from some sense of insecurity about how we're doing as parents. It's completely human nature to emphasize negative experience--an evolutionary biology might tell you that it's what kept us alive and aware during some more dangerous times for H. sapiens--but I also think that we can consciously try to recall what we do well and how often we do well.
Nicely done, as usual. I like the clarity and thought in all of your posts.
Cheers! Emily
Thank you
Thank you for such a lovely post, and a good example of the power of perspective.
good stuff
I won't pretend to understand even a fraction of the challenges you experience with your son, but this is a great reminder about attitude. I can choose how to think about the difficult days- thanks!
Kara
Kara@MagnetStreet.com
www.NotesFromTheNest.com
Oh, I love how you gave both
Oh, I love how you gave both emotions validation.
I can tell you had a GREAT day and that's the part that sticks with you (& Leo).
Here's to MORE great days!
Lynn
bittersweet
I liked to describe life raising my son as, yes, "bittersweet," as our days are shot through with just the sorts of highs and lows as you describe here. One thing I've learned, too, over the years, that a lot of doing my best by Charlie is changing how I respond to him; about, as you write, changing _my_ attitudes.
At Xmas in the Bay Area last December, we had the most marvelous walk in the Marin Headlands with my parents. Glorious, glorious. Charlie had a big explosion in my parents' driveway as we were coming into their house. It makes so much sense to me why he did: He saw and did so much that was new, he was in a totally different place far away from home in New Jersey and his body clock was totally awry, he maybe wanted some familiar food and didn't know how to access it since we were in California......
Every day with Charlie seems like the day you describe, full of adventure and things happening you wouldn't expect (Leo choosing his own clothes, and putting them on himself...!!!!!). And then there are twinges of sorrow and sighs when I catch myself wishing that Charlie didn't have to struggle so much to tell me what he'd like or what was bothering him---his explosions are communicating something that his words can't yet explain. I guess that's where there's a bit of bitterness, not at Charlie (not ever!) but that I can't figure out more things more quickly for him.
Most of all, life with Charlie is very sweet. No matter what happens in a day, just having him with us makes it all good.
Thanks for this, great stuff.
Kristina
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still soapvoxing, now @ kristinachew.com
so true
And so well written. Thanks for this post.
Partial Exaggeration
Thanks to everyone for the kind words, and empathy -- and good to hear from people like Emily and Kristina whose understanding verges on mental twinning.
FYI, the italicized negative sections were highly exaggerated. Parenting Leo well means doing my best to reject that kind of thinking -- the kind of thinking promoted and encouraged by the article/website I cited.
It took years to develop a positive attitude, and happened through finding & participating in several great parenting/special needs communities, both online and IRL. If you're struggling because you haven't found similar resources, let me help you find them.
Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph
...this is not to say I
...this is not to say I don't still have plenty of grumpy days. But no matter how hard things are for Leo, I try not to disrespect him. If he's intentionally being a little shit, though, I will call him on it. Autism does not negate his being an eight-year-old boy and a big brother, and the associated typical behaviors of which few parents are proud.
Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph
Your postscript to your
Your postscript to your comment above sounds so much like me that I buy into the "mental twinning" thing completely...except that you and Kristina seem like my much-more-mature-and-levelheaded mental twins.
I'm back because this is just such a good post. Worth reading again.
Cheers! Emily
Yay Paragliders Update!
We went back to Mussel Rock Beach in the afternoon yesterday, and the paragliders were there! Leo & his little sister LOVED THEM.
@emily, Does that mean you might blogroll me now? *elbow jab* :)
Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph
Are you serious?
Gah. I can't believe you're not on there. I suck at my stupid blogroll--it's a social skills issue, I'm sure of it. Yes, of course, I'll go add you, all three of you. I built that thing when I first put up my blog and have never gone back to edit it. If it makes you feel any better, until a few days ago, I had the old AutismVox link on there. Yikes.
Cheers! Emily
Very nice job!
It was a pleasure to read this, Even your italicized worst thoughts were no where near what was on AoA, though.
I've been saying a lot lately that the attitude determines the situation. Once again, you've amply demonstrated this to be the case.
I know you're busy, but if you have a chance, would you mind at least posting a link to the piece at Countering's facebook group and Raising Autism? I'd hate for any of the members to miss your piece.
Thanks and best,
Kim
Thanks Kim! I added to
Thanks Kim! I added to Facebook, definitely; am not quite sure where to place the link on Raising Autism; let me know your preferred category or heading.
-S
Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph
Another excellent post!
Thanks, Shannon. for another great post and a reminder about the importance of perspective. I find the times I am most challenged in shifting my *own* perspective with Nik are when I am wont to take his behavior personally. When I let myself get sucked into taking it as a personal effront to my parenting skills, or my inate abilities as a woman and a mother...well, it's not pretty. That's when I usually turn to my comadres (well, you're not a padre, right?!) on Twitter or FB or email.
I remember reading that AoA column a while back. Couldn't finish it I was so offended that *anyone* could consider their child in such a negative light. Speaks, to me anyway, volumes about the individual's own feelings of guilt and inadequacy over their inability to control life.
http://maternalinstincts.wordpress.com
That's why we need to find our people
No one's ever going to say it isn't hard, this parenting that we do (special needs or otherwise). But unless we plug into the right community, unless we find the positive role models and the comadres (like you, I am forever grateful), we'll be dragged straight to a constantly reinforced and rebuilt Hell -- and will never realize things could not only be different, but intermittently glorious.
Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org real tales of schoolyard terror and triumph