This is the first time I’ve seen you looking relaxed, she said to me.
You always looked tense. This is the first time you don’t.
Uh, thanks, I said to her. It didn’t take a genius to know what the difference was between this party and all the others we had attended prior to it – it was the first time we had decided not to bring Lil D with us and had left him home with a babysitter.
We have some desi (South Asian) cultural traditions that are pretty set in stone – parties are loud, boisterous affairs with food set out buffet style. The more dishes you have at your party, the better your party is deemed to be. And if your biryani isn’t impressive, well then it’s pretty much a failure. (Ok, I exaggerate. A bit.) And kids are almost always part of the mix. There’s no asking – should I bring my kids? Because that’s a give in.
And so, when we moved to our current city nine years ago, we gingerly began the task of making friends, desi and non-desi, and getting involved in the social scene. We knew very early that these desi parties would be tough for Lil D. But kids always came along, so he came with us, though the noise would be loud, the rooms crowded, guests would arrive an hour after the invitation time (you know, desi-standard time), men and women sat in separate areas of the house and the kids ran in all the rooms – the potential for disaster on Code Orange or Red.
Definitely not Lil D-autism friendly.
But we trudged on, adhering to what was the standards of social mores in our community, working hard to make Lil D as comfortable as we could. (Bringing his favorite foods, favorite toys, having one of us always be close by to make sure he was all right and others around him were all right as well. Sometimes coming in two cars so one of us could leave early with him or all of us committing to leaving the party soon after dinner was served. Or, when push came to shove, one of us stays at home with him, or tag teaming and going to the party in shifts.)
I thought bringing him with us was the right thing for a few reasons, one being that I wasn’t going to be one of those desi parents who hid their special needs child at home. If we went somewhere, he was coming too, because dammit, this is our family. And if this was going to be our community, then they would have to learn inclusion and acceptance.
Until, like many milestone moments in our autism journey with our children, we asked ourselves a very simple question – is anyone having a good time? Well, not really. I mean yes, but sort of. It was more stress than anything.
And the second question – why does it matter what everyone else does? Isn’t it more important to do what’s right and comfortable for Lil D and for our family? How long are we going to try and make him, and us, fit into the social mores of the community in which we live? Why can’t we balance that with making the community and social mores work for what our son – and his family – can manage? Because inclusion for the sake of inclusion? Well that helps no one.
As usual, my husband came to this epiphany well before I did. It took longer to convince me. I was worried that if we started leaving Lil D at home, if we ventured into this fractured family-sort of mindset, then would we ever be able to pull out? Would it become so easy to have him stay at home that we wouldn’t push him (and ourselves) – when it was an appropriate time to – attend functions, parties and other social engagements together?
We said Bismillah and made the necessary changes.
Which brought us to that party about six years – just a typical Saturday night desi party – with the buffet-style food, biryani, men in the living room and women in the family room, kids everywhere and dinner being served at 8:30 p.m. when we all had been invited to be there at 7. Pregnant with my third child, I sat on the sofa with the ladies, while A played around the house, and just chilled.
And my friend remarked on how I was looking relaxed for the first time at such a party.
I remember that flush of guilt that rose up in my face. I’m always one whose emotions are clearly etched on my face. And then the flush subsided. Because it was ok. Sometimes these situations wouldn’t work for Lil D. Sometimes they would. We would figure them out, one at a time, keeping his peace of mind, and ours, as our guidepost.
If autism is a journey, as the cliché goes, then it’s one where we’ve certainly stumbled through traffic jams, roadblocks and potholes as we continue to figure out what works and doesn’t work for our family. We now know better which homes work better for Lil D, how many people are too many people for him, what internal triggers we have to be aware of before we decide whether to go somewhere together, what things are truly worth it for us to attend as a family — for him to learn how to manage (our huge community Eid prayers come to mind) — and what things are not.
We’ve learned that what is most important is to try and do what works for our son, our children, our family. Not at the expense of others, but with respect to ourselves and others.
This weekend another family invited us over for the first time to their new home. They went to special lengths to make sure the situation would be good for Lil D, so that he would come too. Only we and my sister-in-law’s family were invited. These friends made sure to ask my sister-in-law to make sure her eldest son (who is now a freshman in college) would come as well – because he is Lil D’s favorite person.
All day we planned to go as a whole family, though the past two weeks have been very up-and-down for Lil D, though he has been fighting a persistent cough and cold virus.
But by the time evening came, as he had been doing the past several evenings, Lil D gave every indication that he did not want to go anywhere.
And so we took shifts – my father-in-law stayed with him first. Then my husband, after eating dinner at our friends’, came back home to be with Lil D so my father-in-law could join us.
Our friends were disappointed that Lil D didn’t come. We were really hoping to see him too, they said. But, as I knew they would be, they understood of our decision. Next time. We’ll try this again.
We’ll try this again. It’s all we can do.