Zen and the Art of Autism Maintenance – Part One

Zen and the Art of Autism Maintenance – Part One January 4, 2012

Note: There are a lot of things I want to share with you regarding our winter break, managing Lil D’s autism through the break, our adventures in flying and finding some sort of peace with the chaos that is our life. So I’m doing this in parts. This, of course, is part one.

They went back to school this week, my kids – after two weeks of winter break. We survived. We did something radical, we had some fun and we had some very, very awful days. The last few days were tantrum and anxiety-filled for my eldest, who was done with these routine-less days and longing for the rigidity of the school-day schedule.

I hate to think of vacation and breaks as something that needs to survived, but when it lasts longer than a week, it inevitably gets tough on everyone, especially for Lil D. Perhaps you’ve heard this phrase before: if you’ve met one autistic child, you’ve met one autistic child. So, though breaks are hard on my son, for other autistic children, perhaps breaks from school are more welcome.

But we’re talking about my son here, for whom a vacation is more than often anything but. Lil D usually thrives in a school routine for a variety of reasons: His schedule is very routine-based, and he knows what is coming up. At school, he is kept busy and occupied with work and learning throughout the day, and he has his own aide, So, he pretty much has individualized, one-to-one attention most of the day.

Let’s compare that to when he walks off the bus into our house. Here, we have a schedule too, but it is looser, and he doesn’t not always get one-on-one  attention. Lil D’s sister, who is 8, and brother, who is 4, demand a lot of my attention. There is dinner to be cooked, my own office work to complete and his sister’s homework to get done. She also reads Qur’an nearly daily (which I, or when she is here, my mother-in-law, supervise), and has other activities. Our 4-year-old is demanding in the way 4-year-olds typically are: “Mamma, Mamma, Mamma, come here! I need to go potty, play cars with me, I need some juice please …”

(Click here to view this slideshow I wrote for Parents.com about a typical day in our lives with Lil D and my other kids. You’ll get an idea of the organized chaos we’ve got going on here.)

So, although I know Lil D loves his family and his home, he loves school, and it seems to me that he’d rather be there than here. It hurts to think of that, but I understand why, which leads us to winter break, big decisions and autism maintenance.

Everything’s Bigger in Texas

Months ago, I broached my husband with an idea: Let’s go visit my brother and his family in Texas over winter break – all of us. I knew it would be tough, first and foremost because we would have to fly.

We’ve flown with Lil D before. We’ve even taken him to India before – something I don’t plan on doing again (but Allah knows best). The last time I flew with him was when he was seven, and a lot has changed in four years. He’s bigger, his tolerance for various things has decreased, and though his receptive language (listening skills) continues to improve, the very fact that has no preferred activities, (meaning he’s not into any video games, he’s not addicted to his iPad, he doesn’t watch television) — other than twirling his beads and manipulating various finger toys — makes it very difficult to occupy him in a small, confined seat for a four-hour flight.

Also, there’s the issue of tantrums. Not if, but when they would happen.

Believe me, we considered everything. EVERYTHING, that could go wrong. But we also felt that we had to try. We weren’t ready to limit ourselves to a life where we could not fly anywhere as a family. (Increasingly, we are vacationing or attending family events in groups – me with two of our kids, husband with one of our kids. Our last four trips, outside of visiting my parents who live two hours away, were taken without Lil D.)

This was about two things: vacationing as a family, and my husband and myself building the strength and courage to do something like this. I didn’t want autism to be the bogeyman. I’ve tried to walk a line with Lil D where I push him out of his comfort zone, but I also try and respect the things he cannot tolerate and consider what will make him happy and where he will be happiest.

Lately, autism had been beating us down. It seemed like too many things were too difficult to do with Lil D, and I wanted to break that cycle.

We ask ourselves three questions when we want to do something that includes Lil D, whether it’s as small as going out to dinner or shopping with the whole family, or as big as should we fly to Texas: 

  1. Is it worth it to everyone?
  2. Will he be relatively happy?
  3. Is this good for him and us?  

 The decision to take a trip to Texas as a whole family passed the test.

 In part two (and maybe a part three – if this goes that long), I’ll share our flight experience with you, the trip itself, how things fell apart once we got home, and most importantly, whether it was all worth it.

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