I admit, with each passing BlogHer conference, I find myself attending fewer and fewer of the actual sessions. Sometimes I just get held up in the lobby or Expo hall, sometimes there's just too much else going, sometimes I just can't seem to bring myself to commit to a particular topic for an hour and a half.
In fact, this year I attended exactly one actual conference session: Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe.
I admit I walked into the room feeling a bit like an interloper -- after all, my child certainly has a wide swath of spectrum-like needs and special acronyms, but he does not actually have ... you know, autism. But I've always attended BlogHer's special-needs parenting session (and there is one most years, though not all), and struggle with many of the issues that come up time and time again: privacy, advocacy, the endless search for resources, trolls ... and the need for both support and to express to the world that our children are not burdens, or the sum of their diagnosis.
This year's theme about shattering the "myths" of autism was a great one -- you can read some of the major ones the panelists tackled here at the official liveblog. And the conversation quickly turned to some of the things that people say to us -- as bloggers, parents, guardians, etc. -- that MEAN well, but miss the mark. And I found myself nodding so hard I might have sprained something.
"He's so lucky to have you."
"He so fortunate to have you as his mother."
"God meant for you to parent this special child, because you're so GOOD at it. So GOOD for him."
And etc.
I know these readers and other parents mean well. But like every sort-of trite or canned answer, these sorts of sentiments are troublesome. I'm glad that other mothers brought them up, because once you peel back the I'm-just-trying-to-say-something-nice sentiment, I have a problem with the idea that Noah "lucked out" to be born into our family, presumably because we actually give a shit about getting him services and therapy and staying educated on his challenges. Yes, I KNOW there are special-needs kids with parents who don't do any of that, but there are also parents who forget to feed their typically developing children, and I don't see anyone smugly patting us all on the back every time we set out a peanut-butter-and-jelly sandwich, you know?
These sorts of phrases bug me for a few reasons:
1) They imply that Noah's successes and development have less to do with him, and everything to do with ME,
2) They imply that Noah's successes and development also have little to do with the army of teachers, therapists, psychologists, and doctors that have touched our lives along the way, or belittle the very important role in state- and district-run services and the desperate need for more, even for kids who have "good" and "involved" parents, because again, HE HAS ME, THE MIRACLE-WORKING WONDER-MOM,
3) They imply that without Me, the Mother Appointed by God to Parent Noah, he'd be off drooling and hand-flapping in a corner, because ...
4) They imply that Noah is a burden, and not the sort of child anyone would actually want, that I am doing something INCREDIBLE by simply ... raising the child I gave birth to.
And that's the implication that made pretty much everyone at the BlogHer panel huff and puff and get sputtery and indignant, because NO FREAKING WAY. "I feel like I plucked a four-leaf clover the day he was born," Julie said at the panel, at the idea that her son was a burden. And that idea tied in to many of the "myths" discussed at the beginning, that a autism diagnosis is life-ending for parents, or a potential-killer for children, or sentences your child and family to years and years of misery.
There is joy and happiness and laughter in our homes, just like in yours. We have dreams and so does he. We go out for pizza and play on playgrounds and drag our children on boring errands for back-to-school clothes. We bribe and scold and lose our temper and make mistakes and start over the next morning. My son is "lucky" because his father buys him eleventy hundred Star Wars toys every month, and because sometimes I make a pan of chocolate brownies before dinner, and because we live in an area with well-funded, progressive early intervention and special needs programs ... not because the stars aligned and blessed him with two perfect, sainted parents who are uniquely suited to drive him to occupational therapy.
Sometimes I just wish a stranger would comment on the real truth of the matter once in awhile, which is that WE are the lucky, fortunate ones, just for winning the random genetic lottery that brought us this wonderful, one-of-a-kind little boy.
(Thanks again to the wonderful ladies at the Blogher Autism panel: Shannon of Squidalicious, Shark-Fu, Jean of Stimeyland and Carol Greenburg [@AspieAdvocate]. Thank you for all smiling so nicely at me when I cried.)
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Comments 19
It was a great panel and I learned a lot. And you didn't cry alone, Amy. There were a lot of weepy eyes in the room after you spoke -- after a lot of speakers. We're all lucky to have been there to hear so many of the things said in that room.
What I basically said is that Noah is lucky to have you just as Ezra is and Jason is and we all are. It has nothing to do with special needs or supermomming and everything to do with your being YOU (smart! beautiful! hilarious! talented! brave! generous! foul-mouthed!).
Thank you for writing about this. It made me think!
I will say sorry now, because I've said 's/he is lucky to have you' to people without knowing how it sounded. I will say however, that I've also said it to parents of children with no diagnosed disorders who are amazing parents. I think I've said you're lucky to have each other to some parents too.
I will try to think more of how it sounds to the other person. Thanks for posting this.
It has been over 4 years since we started our special needs journey - and now we are graduating from OT and ST is being reduced to 1x a week too. We have lots of work to do - but my baby doesn't have to crash off the furniture to feel where his body is in the world and he can have his haircut without being restrained and screaming, and he can speak in clear beautiful sentences. This is huge - and he's awesome and he did it.
I might have put him through his daily paces with a sensory diet - but he did it. We do some diet intervention - and I might cook - but he only eats his "legal foods" with a very rare complaint. He's an awesome loving fantastic kid. I'm so lucky to have him - and that is exactly what I tell people when they tell me he's lucky to have me. I'm the very very lucky one to have him and his sibs.
Thank you for sharing that. :)
(And so many people say, "You're doing everything you should." Which only makes me aware of the many additional things I want to do, but haven't gotten around to yet.)
But all kids should be credited for progress they make of course because in the end it is them they do it. You are lucky to have Noah and Ezra. But they are lucky to have parents that will push for what they need also. Although saying that I would never comment generally saying that a kid is lucky to have someone for a parent!