Ali Family Autism Truths #4 – Two Different Worlds, One Home

Last updated on: April 4, 2015 at 10:41 pm by Dilshad Ali

Ali Family Autism Truths #4 – Two Different Worlds, One Home 2015-04-04T22:41:35-04:00 Dilshad Ali

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April 4, 2015 – Autism Awareness Month, Ali Family Autism Truths #4

There are days when it feels like two completely different world exist under my roof.

There is D, spending the majority of this first day of his spring break spinning his beads in our bedroom, or in the basement bedroom where his grandparents sleep. The connection is distant today between him and the rest of us, as we enter in that final furious stage of shopping/packing/cooking/readying for a spring break trip and a big family wedding. I took our other two kids out with me on a day of errands, dragging them from one store to another as they complained and goofed on one another.

D stayed home with his grandparents, as they packed their suitcases.

The house is abuzz with preparations to leave. Indian weddings are no joke. There are multiple functions, and outfits, jewelry, shoes, bracelets, hair accessories must be coordinated for each one. What will all the girls be wearing on the wedding? Will the boy swear sherwanis or suits? Do dress shoes still fit? Do we have clean dress socks? What bracelets on which outfit? And this is on top of daily wear. The pile of clothing, shoes, party wear and various sundries grow in our bedroom, and two gaping suitcases sit, waiting to be filled.

D takes little notice, or so it seems. What he’s really thinking about all this, I can’t be sure. I’ve explained it all to him – your dad, grandparents, brother and sister will be going away for the week to attend a wedding. I know these weddings stress you out, so I’m going to hang back here with you. We’ll have a good time, just you and me!

We dragged D to several family weddings in various cities over the years, trying a variety of approaches to help make the experience as easy for him as possible. When he was much younger, we managed on our own. Once we had three kids, the game radically changed. One year, with three big weddings, we tried three tactics: First wedding, we tried handling it on our own. My husband took on the brunt of hanging out with D in the hotel lobbies during that wedding while the other two kids stayed with me. The second wedding we brought along a trusted therapist/care giver with us. She attended every function with us — parties lasting late into the night. By the time we got to the last event, we knew D (and she) were done, and they stayed back in the hotel.

And for the last wedding of that year, we hired an on-site babysitter and arranged to have a room for D to sleep in wherever each function was being held. There was a lot of tag-teaming, but we made it work. But when all was said and done, my husband and I sat down, talked it out and came to this conclusion:

No more.

No more big Indian weddings for D (unless they were in-town or close by, and extremely important). It just wasn’t worth it. He spent the better part of each event outside or in the lobby, we were stressed and no one enjoyed anything. Not to mention the huge expenses. And for what? To please the rest of our family, who wants us all to come? Just so we could all attend together?

No.

And so the kids excitedly ask me questions as I continue to prepare the family for their trip. D chooses to hang out in whatever room we are not. As much as I wish it could be different, that we could all go together, that we wouldn’t have to make these choices, this is our reality. Two different worlds. One home. That’s how it is right now. It’s not always like that, but it is today.

And that’s ok.

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April 3, 2015

Ali Family Autism Truths # 3 - Spinning in Circles

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April 5, 2015 Ali Family Autism Truths #5 - How Inclusive was Your Easter or Passover Service?

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