23. Purpose and Engagement

“Purpose and Engagement”

A little while after I started this blog, a reader reached out to me, and because we knew enough people in common and lived near enough to each other, we decided it wouldn’t be too creepy to meet in person.

This is how the delightful Aparna K and I met. And I’m so glad we did. The time was too short, but we talked so much, we were exhausted.

Aparna said something that really stood out to me in our conversation–that even when a topic like autism has no personal resonance for a reader, it can still say something powerful, and can open a door to awareness. In her work, Aparna deals with families and individuals who are undergoing similarly high stress situations, though with a different root cause, and she sees the autism issue in a similar light–that we need a support system; that sometimes our extended family and friends don’t actually know what we need in concrete terms; that sometimes, we keep silent rather than ask for help because we have already experienced a lot of judgment and do not feel up to hearing critiques, third person narratives, or platitudes, because they feel controlling (this is an amalgamation of both of our thoughts).

All I could think was “OHMYGODYES” while Aparna was saying those things. It sometimes feels, as an autism family, like we are caught in a fugue–we see the world go by, but can only participate intermittently. And we are so absorbed in the daily crises and in keeping the hamster wheel of comforting routine turning steadily that we can forget to turn outward and keep in touch with other people.

The messier question is that of what we actually need from others. I couldn’t even tell you. Sometimes it’s easier not to ask. And that does such a disservice to the kindhearted people around us who are always telling us that they want to help. If I had to answer honestly why I don’t ask, I would say–because I’ve already lost so many people on this journey, I don’t want to lose you too.

And Aparna is right about the judgment. I’m rarely in the right frame of mind for it. What IS the right frame of mind, anyway? We haven’t done anything wrong, and autism isn’t some punishment, and it’s really okay to scream into a pillow after you’ve been pinched or slapped or peed on, and that doesn’t make you misguided or in need of an attitude adjustment. It just makes you the kind of person who doesn’t want to be pinched or slapped or peed on, and who needs some down time before you can smile and be Pollyanna again. Plus sometimes, I may think I want to talk about other stuff because I’m sick of autism myself, but I am just plain too tired. I feel like I don’t have it in me to be a good in-person girl pal right now. It’s the kind of bone deep fatigue and disconnectedness that happens when you have an infant, except my kid is almost eleven.

Lest you are left with the impression that we talked only of dreary matters, we also laughed a great deal while describing how we met our spouses (in the most romantic of circumstances, naturally!), what we think of raising Indian kids in America (thank goodness for New Jersey-area ease of cultural access so that we don’t have to wing it), and wise words our mothers have said to us (we draw on them all the time).

As we were wrapping up our lunchtime chat, Aparna asked me what I would want readers to take away from my writings. That was a tough question. When I started the blog, it wasn’t because I wanted to educate anyone, or that I wanted to chronicle anything in particular. Mostly I love to read and write, and autism is a topic I’ve steeped myself in for a decade now, so it interests me. But I am aware that it is a niche sort of topic, and perhaps there is some innate wish to say something, even if it isn’t foremost in my mind while I write. Certainly the themes have shaped up that way at times!

Partly, I hope that readers will step up and be a community for special needs families. I am so grateful to all of you who have gently encouraged your kids to interact with A, and who talk to G even when she doesn’t have much to say back. You can’t imagine what that level of acceptance means to me. They aren’t the easiest kids to get to know, but to them, small encounters leave lasting impressions, so it all counts, please trust me on that. A big shout out also to people who keep me laughing through texts. Sometimes we want to pass as people who have a sane life, and your friendship gives us that. And I want to say this–there are plenty of judgment-free people and they are worth honoring. I’m proud to call them my friends. If more parents and siblings of special needs have people who think of them and act on those thoughts by reaching out even a little, it makes an enormous difference.

I am also deeply impressed at how many readers are willing to engage with my writing for itself. What a brainy, generous bunch you are. I love talking about writing, and you give me that opportunity to do so, on a subject which is intellectually fascinating, and also attracts me on a lizard brain level. I’ll keep this up if you will!

And finally, and oh so crucially, it’s easy to talk in the abstract about why there should be respite care or affordable therapy or a spirit of acceptance by the larger society, but as Aparna so powerfully emphasized, nothing brings it home like up-close accounts. I’m psyched to be part of that effort. And here is the perfect moment for me to say a big thank you to Dr Naveen Mehrotra, because, without him shoving me along like an unrelenting and annoyingly effective bulldozer, I probably would not have thought of a blog at all. His foundation does so many incredible things, and I’m delighted to be a part of bettering our lot as a community.

I’m very glad to have met Aparna. Her interest touched me, and her ability to think on a big picture level awed me. There’s something very gutsy about writing to a stranger and making a connection over a topic that is so vast. Since the best conversations are the ones that keep you thinking, and thus, never really end, I hope we will meet again.

One of the platitudes that used to annoy me the most is–the universe/God only sends such special children to people who are worthy. When people said that to me, I used to think, “Pah. Easy to say when it’s not you.” But you know, autism is the reason we’ve met so many fabulous and action oriented people, so I really believe that it came roaring into our lives with a purpose. I hope A feels the same about sharing his world with us.

Radha.

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