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The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

The Cutting of Hair

  • Posted on March 10, 2014 at 10:00 AM

When we first learned about autism and sensory integration disorder, we learned (among many other things) why haircuts seemed so traumatic for the boys. Simply put, they seemed traumatic because they were traumatic.

I remember how the boys would writhe under the scissors or the buzzer (an electric hair clipper). It used to be that I would sit down and hold one of the boys on my lap, while my mom cut their hair as quickly as possible. We’d all get covered in hair, the child would cry, and it would end with us in a breathless, exhausted tumble of remonstration, remorse, and reconciliation.

Once we understood that, yes, they acted like haircuts hurt because, to them, it did! When we understood the impact of sensory integration disorder and ineffective communication skills, we changed how we did things. Mainly, we performed haircuts in short bursts and separated each burst of haircutting with intense sensory regulation strategies. The result was a little less trauma, but otherwise the same. As the boys grew older and stronger, it seemed—at first—that the only thing that really changed is that Mark was the one to get covered in hair instead of me.

Then, something miraculous happened. It started with Willy. You see, he started becoming adept at self-regulation. He gained more self-control. So, while he still put off haircuts as long as possible and continues to dislike haircuts, he became able to endure them to the point that he could sit for them himself, he could tell us when he needed a break, he could regain his own self-control, and could tell us when he was ready to come back.

Alex’s journey is this regard was a little less straightforward and isn’t as progressed, but he can also sit for haircuts by himself. He’ll let my mom know when he’s had enough. He’ll come back when he can tolerate more. He can self-direct his participation. And they can both tolerate the buzzer!

In Ben’s case, the story is a bit different. Becky, Ben’s therapist, took over the responsibility of cutting Ben’s hair. She volunteered herself and has kept it up over the years. The results are satisfactory and we trust Becky completely, so we’ve let her choose when to cut Ben’s hair, how to cut his hair, etc. So, she manages the entirety of the project. Ben still cannot tolerate the buzzer, but seeing as Becky does it all by herself—controlling the environment in which the hair is cut is one of her strategies—Ben, too, must be doing better.

When the boys were little, I despaired of ever reaching this point. I know there are parents out there who are in the midst of that despair. But things do get better. Hang in there!

Where the Footprints Lead

  • Posted on October 15, 2012 at 8:00 AM

Adolescence, epilepsy, and the onset of bullying: Willy’s got a short fuse. I understand this. I appreciate this. But, at the same time, it’s getting frustrating. My lovely, empathetic, wonderful little boy has become something of an explosion-waiting-to-happen. Anything can become a match that lights his fuse, and his fuse is short indeed. TriggerBOOM! With very little time lapse.

Recently, for class, I relived that Friday when Willy had his grand mal seizure. Though I didn’t intend it, my teacher came away with the impression that my story showed how much I wanted to take my son’s pain unto myself.

I can’t.

I know I can’t.

I have a mug that I use as a penholder (because the coffee would get cold before I could finish if I used it as a mug):
“During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you.”

The lines are from the poem “Footprints” (of disputed origin), which my mom knows I love, which is why she bought me the mug.

As much as I want to take these hardships from my son and let him once again find his full-time joy, I can’t. I know I can’t.

And I know, though my son has a lovely faith in the Lord, that even He won’t simply take away these hardships—any more than he “takes away” my own.

We just have to follow where the footprints lead and support each other as we find our way through the hardships of our lives, even when it feels like we’re walking quite alone in this world.