Posted in Autism Spectrum Disorder, Parenting

Our New Normal (For Now)

“Normal” is open to interpretation. That’s true for every family, but I’ve really come to understand the concept better since Baguette’s autism diagnosis. Actually, I knew it before her diagnosis–but that’s what made it okay for me to say openly that my normal is different from the normal you experience. Or you. Or that person over there.

I came across a post about what “normal” means for one family dealing with ADHD, and it got me to thinking about what is normal for us.

1) The house is always messy. Between work, commute, and ABA, we do not have time to clean. Mr. Sandwich does the laundry and I do the dishes, but the rest of the place is profoundly cluttered.

2) No “me” time. This isn’t exactly true. I get my hair colored and cut every six weeks, and about as often I get a massage. Mr. Sandwich has a (sometimes) regular Sunday morning bike ride. But with Baguette’s long-standing distaste for sleep, I can’t even read a magazine in one sitting. Recently, it took me three weeks to finish streaming a movie. We have literally years of “Castle” in our DVR–or at least we did until we gave up and deleted them, with plans to buy the DVDs at some point in the future.

3) There’s an awful lot of screaming. Baguette is frustrated by her inability to communicate. She’s also frustrated by the incessant demands of her ABA schedule. And sometimes the only way she can express that is to rage and rage and rage. As far as I’ve been able to figure it out, the only thing I can do is be there with her, as calmly as possible, and let the rage burn itself out. Friday was one of those days. After at least an hour of crying and screaming, she wore herself out until she was able to say, “I want carry me,” and I stood there with my arms around her, rocking her back and forth for at least 15 minutes. Then we sat down on the couch, and I held her on my lap until she slid down on the floor, still with her shoulder against my leg. I didn’t move until she did, because when she moved away, that meant she was feeling better. (Sorry, neighbors. This is just how it is.)

4) There’s probably a #4, but I’m too tired to come up with it.

5) The surprises never end. Baguette loves the water. She’s been teaching herself ASL–and now she’s teaching me, too. Lately she tells me she wants to play with her by saying, “Come along, Mommy,” and I have no idea where that phrase came from.

All of this will change with time. And that’s normal, too.

Author:

I am a lazy triathlete living in Los Angeles.

6 thoughts on “Our New Normal (For Now)

  1. I think the ASL is brilliant on her part- we don’t know what, exactly, causes the speech delay, right? It seems like kids like Baguette want to express themselves and have the mental capacity to do it, but can’t get the physical capacity to work how they want. How clever of her to recognize another method and try it.

    Have you guys tried the Signing Time DVDs? Both my kids loved them, and yeah, we all know some sign language now. (I knew a little from when I was a kid and my Mom got interested in it, but now I know more and more useful words!)

    They have “baby” and not baby versions. My kids loved both. We’ve already given all of our DVDs away, or I’d offer to send them to you if you haven’t tried them already.

    1. It’s phenomenal. We have a couple of apps that have animated babies singing songs and signing along with them, and that’s how she started. Knowing a sign makes her more confident about saying the associated words, so I’m trying to learn more signs so that I can help her say the words that seem to be eluding her most urgently.

  2. I miss “me time.” Sitting in front of the TV, just hanging out, mindlessly watching.

    I mean, I wouldn’t trade what I have now for anything, but I certainly miss it. When I do run, it’s either way way way early in the morning or because I can’t physically go home, see my kids, and then head back out to whatever my next commitment is. But, as you say, that’s ok.

    1. That kind of “me time” is a real luxury now, isn’t it? Our anniversary was last Thursday, but we celebrated on Friday–we both had the day off from work, and Baguette’s day care was open. So we took advantage of the fact that we didn’t have to worry about how she’d react to being left with a sitter or grandparent, and went to Fancy Lunch (rather than dinner), and downloaded Iron Man 3 (rather than going to a theater). And then we got to pick up Baguette and have time with her. It was a great day.

    1. That reaction really is my instinct. It’s not that it isn’t a challenge–it al\ways is–but it also feels like the most natural thing in the world.

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