Saturday, May 20, 2017

Your Mother Is Always Right, or I Hate Change, Part 9

I am still on retreat with some of the ladies from my church, sharing a room with my mom and enjoying the time with her. And yes, I did just tell her the title of the blog post I was going back to our room to write and she had a good laugh. She asked if I meant her, as in my mother, or in general, everyone's mother, and I mean both. Let me explain.

As a part of our retreat, my mother set up a room where we could worship God through exploring our creativity. One activity was using clay to make holding crosses, which is just an object roughly shaped like a cross that fits nicely in your hand. I wasn't so keen on the activity when she mentioned it to me a few weeks ago, mostly because I'm not really a gifted crafter. I can do cross stitch and do it well, but that's a very straightforward project that requires little imagination and has lots of very specific directions. I like structure. I like directions. This was not one of those kinds of projects.

But I'm in the room with 19 other people and it would be impolite if I didn't participate, so I start working the clay and following her directions. (If you want to know more about our history with Super Sculpey and its adherents, go talk to her. It's a fun story with really cool handouts.) Yesterday, when I had "helped" her set up the room, I picked out a shell from my childhood (we still love you, CBS!) to use in my own cross. And today I picked a dark blue to work into the beige and left it in streaks instead of mixing it all the way in. You can see in the picture above that it's a decent effort. But what I didn't expect was that after it's trip through the oven, how comfortable and comforting it feels in my hand. I don't think I put it down for two hours this afternoon, when we were laughing and sharing stories with several ladies in the craft room.

You see, my mother was right. It was a good activity to do together, to allow ourselves to go in different creative directions (I will try to get a picture of the cross made by my friend Ally; it's beautiful), and I have something I really love to take home with me.

Where am I going with this? For a moment, let's go back to 2006 and Alex working with Melissa in Early Intervention. One of my biggest questions for her was whether or not the basic rules of politeness apply to special needs kids. Should I expect Alex to say please and thank you, hello and good-bye, and not make excuses for his bad behavior? Not surprisingly, she said yes. But, she did tell me, it's going to be a lot of work to get there.

If you're not a special needs parent, you probably don't know what ABA therapy is. Take a moment and glance here and then come back. For the rest of us, we know more than we every really wanted to. In brief, it means breaking tasks down into small pieces that a developmentally disabled child can better understand, and then repeating all the steps 3 million times (slight exaggeration) until your child has grasped the task.

Most parents understand that in order to teach their children new things, they will need to demonstrate and practice more than once for the child to learn and be able to replicate the task. I remember hearing one of the many therapists tell me that a neurotypical child will need 5-15 repetitions and a child will autism will need upwards of 100. Or more. It's a little daunting, let me tell you.

It isn't true of everything. Alex taught himself to read by age 4 and there are some things that we only show Miranda once (like where I hide the chocolate) that she picks up right away. My mother-in-law joked that we should never let her watch someone hot wire a car or we'd be in real trouble.

In true ABA fashion, let's break down a task:
"Alex, hang up your coat."

  • Take off the coat.
  • Hold the coat in one hand.
  • Find a free hanger in the coat closet.
  • Grab the free hanger in the closet.
  • Hold it by the top.
  • Slide one sleeve onto the hanger. 
  • Wrap the coat around and slip the other sleeve onto the hanger.
  • While holding the hanger with one hand, make room for the coat in the crowded coat closet.
  • Hang up the coat in the space you just made. 
Done. Now, do this for everything in your life. Getting dressed, brushing your teeth, taking a shower (this is still problematic and sometimes I have to come back and review the steps with him again to keep him from washing his hair with Miranda's conditioner). And that's just the easy stuff. Let's not think about potty training; we can revisit that later. Maybe.

Now consider how much more complicated social interactions are.

  • "Alex, don't take the toy from your cousin. Say, 'May I play with the train please?'"
  • "Alex, don't interrupt when we are talking, Say, 'Excuse me please, Mom.'"
  • "Alex, don't scream at your sister. If she is bothering you, please tell me, 'Mom, Miranda is bothering me.'"
  • "Alex, just because your classmate says he hates Star Wars doesn't mean you can hit him. Not everyone has to like it."

It is never ending; some of these conversations I had with him just last week.

Still, my mother was right when she taught me the rules of basic politeness and good conduct, to treat other people with respect, to love my neighbor like I loved myself. And Alex does need to learn all these things as well. His diagnoses do not excuse him from bad or disrespectful behavior. They might explain it but they never excuse it. When he poured all of Miranda's toothpaste down the toilet last week, he went to the store with me to buy her more and paid for it out of his own meager stash of coins.

We are still, 11 years later, a work in progress. I know, I know, everyone is a work in progress. Whatever. But Alex's road, and ours along with him, is a lot longer and harder. With a lot more of life stuck on repeat.

1 comment:

Anonymous said...

I am definitely on the spectrum with God. I think we've been around the block a BUNCH of times with some things! (I'm glad He's not exaspiratated with me.)