7.31.2014

Autism, Staycations, Patience, and Decompression

Image description: a beige-skinned
boy with brown hair, seen from behind,
at a distance, swimming in a pool
surrounded by a beige railing & deck
with trees and blue sky behind and above
Leo and I have had a lot of together time this week. It's a bit of a staycation. The rest of our immediate family is in Canada, ziplining over 500 ft chasms and watching firework festivals. My Dude and I stayed here because it's the last week of his summer school, and One Does Not Simply Miss ESY. Though we feel the absence of the rest of our crew, I'm exhausted and grateful for the break. I think Leo also appreciates this relative languidity.

We've spent most of our time chilling and appreciating the ease of being a duo. When Leo had a short sharp case of the barfs two days ago, we didn't have to worry about interrupting his sisters' or dad's schedule -- he stayed home from summer school, took up residence on the couch, and we watched his favorite videos as well as some Key & Peele. He asked to go swimming once he felt better, and once I was sure his liquid projectile phase was over, we honored his request to go out for lassis, naan, & saag paneer. He was pleased.

The two of us aren't just fans of downtime and decompressing -- we both need it, Leo more so. As autistic autism parent S.R. Salas writes,
"At some point each of us needs a break from something. For many Autistic people the need for breaks is more frequent and tends to last longer. What would be considered an uneventful day to non-Autistic people: going to school, going to work or whatever the daily routine is, can be extremely exhausting for us."

Non-distracted together time also makes it easier to let Leo do things at his own pace, without hurrying him. To wait and see what he will do, rather than rushing him or even prompting him (our boy does love and ask to be prompted; he is a social dude after all, and feeding us scripts for what he wants us to tell him is a stress-free, unpredictability-free way to converse with his people). I am grateful for this gift of pressure-free patience. It's important, as M.O. Kelter of Invisible Strings relates:
Too often with autism, the focus is placed on one question: ‘How do we make progress?’ And when the time is right, that can be okay…but it can also put an overwhelming amount of pressure on the autistic. Sometimes, the better question is, ‘What does this kid need?’ Sometimes, you gotta set the framework aside for a bit, protect that little heart. That’s always what you go back to.

Leo needs patience to make progress. Repetition, space, and patience. He needs our faith that he's paying attention. And our faith in the utility of repeated scripts, prompting, and demonstrations until he doesn't need them any more -- and, increasingly, he's suddenly doing the damn actions on his own. The other night I wasn't fast enough with his requested prompt to hand him the shampoo so he could wash his hair, so he just complete his entire shower routine -- including rinsing and toweling -- independently. He'd practiced enough. He knew what to do, he just hadn't let himself string it all together before then. It was time. He was amazing.

So, if you're a parent of an autistic child who loves being prompted or uses scripts, do your best to invest in patience. You never know when the skills being taught or modeled are going to root. Even if they never do, if the repetition and the prompting are soothing ends in themselves, the two of you have had that time together, and you're making your kid happy. If your kid is like Leo, that is. 

As long as I'm in an advice-giving mood, here's what I told Washington Post staff writer Mari-Jane Williams yesterday, when she asked for "advice for parents of children just diagnosed with autism, from those who’ve been there." I hope that positivity-oriented autism articles like this only become more common:
I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him. He was the same sweet, capable boy both before and after his autism diagnosis; the only change was my awareness of his needs. And he needs me to love him, respect him and champion him. He needs me to make sure he has time to play. He needs me to fight for appropriate communication and learning resources. He needs me to get him supports to navigate an autism-unfriendly world. Understanding instead of fighting Leo’s autism makes us both much happier people.
I'm still very tired from being rather inept when it comes to managing/living a busy life that sometimes includes intense conferencing, so I hope these thoughts makes sense. Love and listen to and have patience with your autistic kids and give them the space they need, essentially.

Additional input welcome.

3 comments:

  1. I love this comment:
    "“I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him."

    Wish I had something more insightful to say, but I just thought it was worthwhile to say you hit the nail on the head.

    ReplyDelete
    Replies
    1. Thanks. It's always great to hear from like-minded people. Especially where respect & dignity for people like my son are concerned.

      Delete
  2. Please help my classmates and I at Northwestern’s Kellogg School of Management conduct research for children with autism by taking the short survey in the link below: http://kellogg.qualtrics.com/SE/?SID=SV_3gi3ErY4KfSG65T&mbr=ly&post=1

    ReplyDelete

Respectful disagreement encouraged.

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