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.

7.10.2012

Autism: It's Nobody's Fault When It's Hard

Iz is a wonderful big sister to Leo. This is her at last week's family reunion, letting Leo know that the group photos won't take that long, explaining that if he could just sit for a minute, then he can go back to the playground even sooner, and that he's being awesome and patient.

I don't have a photo of her and Leo from yesterday, when she got into a teen defiance spiral while we were in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. I wouldn't want a picture of that.

Afterward, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. (That it is never acceptable to yell the way she was yelling is another, puberty-driven issue.)

Accommodation is part of being part of an autism family. It's just what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled.

I told Iz and Mali that it's OK to discuss situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism (e.g., they are welcome to chastise him if he steals a piece of their pizza).

Leo is always doing his best, he just got through a week of chaotic family gatherings, his sisters know he's a capable kid. He also needs us to support him as best we can, and avoid avoidable crises. He deserves nothing less.

Side note: I've been blogging for 9 years as of yesterday. And this is my 2,500th post. Holy hell.

7.09.2012

Birth Mother Dithering

A new comment popped up on my two-year-old BlogHer post Facebook-Stalking My Birth Son:
"I really have no right to say one way or another what you should or shouldn't do, but from what I have read,-If you are correct in that your son has never been told of his adoption-than he has had something taken from him that nobody has a right to take; it seems that you are justifying and making excuses for the adopive father's completely selfish choices, even though your pain and anger is apparent in the intro of your post.  Your son is now an adult, and you speak of him as though he is still a child. Your decision is perhaps very "noble" but quite unfair to him really...IMHO, he at least deserves to be given the right to choose what he wants to do with the information.  He has a mother out there who has never forgotten him!!!! What could be more valuable?  If he's not interested in following up then fine, but lurking behind the shadows is certainly no good to him (or you really)."
My response:
It is reality-altering information, and there's no taking it back. But you are right in that I'm feeling cowardly, too -- so far, I haven't been rejected by him, at least not overtly.
What do you think? If you were adopted, do you think it is your right to know that information, even if your adoptive parents never told you?

His parents and I never agreed to open or closed, really. His mother was always good about sending me photos, but she died fifteen years ago and since then I've not heard a thing. And I really do think  this information should come from his father, not from me. It would be a hell of a lot easier if I could just find out if he knows he's adopted or not!

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