7.31.2012

For New Autism Parents: On Gratitude

Leo's passed the eleven and a half years mark. I feel like I'm finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary "easier" alternate reality society thinks I'm supposed to pine after. This means I think a lot about the information and attitudes I'd have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.

And that's silly -- neural enhancements aside -- because instant downloads do not equal instant attitude adjustments. There's often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I'm going to dole out some perspective, and attitude.

I think a lot about gratitude. Appreciating what I have -- and I have a lot, as does autism parent Marie Myung-Ok Lee. Appreciating Leo and his sisters for who they are. Thinking about what we do have, what we get to do (see local hike photos below), and recognizing the poisonous futility of dwelling on what we don't.

Leo does love benches along the trail
It's understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it's often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.

Early evening summer hike
A frivolous example: I can't take Mali to this weekend's Mary Poppins singalong because Seymour will be out of town, Leo wouldn't like the decibel level or chaos, and I can't justify a babysitter (Iz is hitting the back country trails at high Sierra camp for two weeks). I'm bummed, but I also accept that parenting in general means not doing a lot of stuff I'd rather do. Missing a movie is no different from the hours I spend not-having experiences and options because of the choice I made and time I put into to being a parent. Yet I'm encouraged to chuckle over and commiserate about typical parenting drudgery, while anything having to do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for his sisters.

Manzanita berries
Is parenting Leo different than parenting his sisters? Sure. Are parts really damn hard? Sure. Is parenting him harder than the unfixabilities of raising a neurotypical child who cannot retain friends, or who gets pregnant at fourteen, or who is an ungrateful, entitled, unapologetic, dismissive jerk? Now that I've been doing this for a while and we have defined our own happiness, I don't think so. I look into my beaming, affectionate son's eyes -- they are gorgeous -- and wonder, why is anyone supposed feel sorry for the two of us, in our contented companionship? I'm grateful that this beautiful boy is my son.

Poison oak can be beautiful, too
I suspect some of the pity we get ladled with has to do with communication. Leo's is atypical,  speaking and articulating are a challenge. But as I watch multiple marriages flame out around us -- many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues -- I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He's not much for abstract concepts, but he's present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?

Found structures along the trail

I wish I'd known how important gratitude is, earlier. I wish I'd had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

210° panorama from the hike's hilltop. Embiggening encouraged.
We've been fortunate enough to find those communities, and for that and for so much in our lucky, lucky life -- I am grateful.

19 comments:

  1. This is beautiful. I've been reading your blog for 8 years now, and as a total stranger not remotely involved in your life, it has been a privilege to watch your family grow and to see you reach farther and farther outward. I read a lot of blogs at that time. Yours is one of two that I've stayed with all these years. There are a lot of reasons for that. Thank you.

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  2. What Anna said, exactly. Even down to the part about reading lots of blogs 6-8 years ago and only a few now.
    It's posts like these that help when I'm having a rough morning with my two (neurotypical) boys, or talking to two dear parent-friends who are in the throws of parenting non-neurotypical kids.
    You have helped shape my understanding of autism - for instance I reckon my friend's son's brain is different, not broken. We need to work to understand him, and help him so that he doesn't have a rough time in the world, but he's OK just the way he is.
    Thank you, thank you, thank you.

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  3. Oh Shannon, this is just so beautiful. So true and so well said. I thought I was done with my July round-up (my monthly "what I loved on other peoples blogs" post), but I'm definitely opening it back up to add this post of yours in!

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  4. "Until you step back and realize that all of life is not-having, if you make the choice to view it that way."


    Dude. Word.

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  5. I really needed to read this today, Shannon.

    Thank you for articulating so well what I have been feeling but was unable to verbalize.

    You hit the nail straight on with this post!

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  6. Gratitude seems to me to be the root cure of a lot of our discomfort in the world today.

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  7. If we focus on the hard parts, if we magnify those parts, if we intensify our focus on them by cursing them and ignoring the good parts, our lives are joyless and tragic. But not because of our children.

    I wish I could bottle your writing and your attitude. You are a joy to know.

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  8. Thanks for the reminder. Like others have said, I feel the same way - your blog is invaluable to me as a parent.

    You said: On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

    I was struck by "ALL OF WHOM UNDERSTAND" - there are so many people in my life with NT kids who just DON'T understand what I go through, and I find online people who do. I'm grateful for my daughter but I am grateful for you, too.

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  9. When is Leo's birthday? We, too, just passed 11.5...and it's been a pretty magical year or so, frankly. Still, I often do need those attitude adjustments you mention, especially as we pass milestone after milestone; I've had to work hard to view them as whooping and hollering events, rather than "most kids would have done this at age 4, not age 11" events.

    I still have so much to learn, though. Thank you for the lesson.

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  10. I just found your blog...by accident. I am a grandmother of a 6 year old with severe autism. I have been having a really hard time lately trying to "look into the future" for my grandson. This has been causing me a lot of worry and sadness...and after reading this article, I realize that there truly is a light at the end of the tunnel. A lot of people do not realize what we go thru as parents/grandparents of an autistic child. It is not easy to deal with neurotypical parents, etc. But, like you, I would not take $1,000,000.00 for my grandson. He is the light of my life. Thank you for reminding me of what a true miracle my grandson is.<3

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  11. In everything you said and in everything you do - you are truly the definition of a MOM. I have sent SO many people your blog URL who have children with autism because they need to hear and see that there is hope. There is a future for their children. There is a light at the end of the tunnel. None of it will be easy (as you've attested to over the years) but it is all worth it in the end to be the best parent you can be no matter your child's capabilities. Bravo, Shan. Bravo.

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  12. Thanks so much, everyone -- the IRL friends, the online friends, the long time readers, the new readers, all of you. You're that community that makes the difference -- allows me to for instance *right now* not be bitter about being woken at 3:30 AM, and instead see this as ... an opportunity to go get milk, and make a donut run, and be grateful that we live in a town where both options are available 24 hrs. (Right? WOOOT!) It's not unfair, it's just what we do.

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  13. This is beautiful. Thank you. I've been following your writing for 7 or 8 years now and over that time have moved from my training to being a provider who works with children and young adults on the spectrum. Following your story and the window that it provides to Leo's story have been a major influence in shaping my own views of the value of neurodiversity. I have pointed all of my trainees and many families here over the years, and now this post will be a special spot for them to start.

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  14. Anonymous1:26 PM

    I've been reading your blog for a long time but I rarely comment. As a single mom who has been known to throw the occasional pity party, I needed your post today. You are one smart cookie. Thank you for your wisdom.

    - Beth

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  15. I so loved this article. I check out your blog every so often and love it. I have 3 kids with Down syndrome and know exactly what you mean when you say you learned one epiphany at a time.

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  16. Anonymous7:19 AM

    I printed out your last few sentences of your post starting with "I wish I had known" so I can refer to them and be reminded of those truths. Thanks for the inspiration!
    --Joel

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  17. I really enjoy your posts. They are helpful and inspiring. I also enjoy that you have strong opinions. Even when I don't agree.

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  18. Yes, this is so good.

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Respectful disagreement encouraged.

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