Sometimes You Win One

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There are times, and these seem to occur with increasing frequency, that raising an autistic child pushes our parenting decisions into what might be viewed as a “no win.” Certainly we had our share of those decisions with our older daughter too, but it seems as if they’re more common with Lily.

Scenarios where we have to pick the lesser of two evils as our best solution crop up regularly. It prompted me to post this graphic, which seemed to resonate with other parents.

venn diagram

A few examples might be: Do we try to get her to eat independently or get food into her already underweight frame? Do we medicate her to help her focus better on academics at the expense of her energetic and happy personality? Do we take her to a child’s birthday party to give her a chance to participate with typically developing peers or keep her home knowing that the crowd and noise are over stimulating and torturous for her? And of course, do we wrap her Christmas presents or recognize that she doesn’t like unwrapping them, and just put them under the tree?

The latest installment of this came as a result of a change in routine from the school year to the summer. Lily, normally a good sleeper, started waking up in the middle of the night. Every night. One of us would have to get her on the toilet to avoid an accident, and too often the accident would come anyway. At that point we’d both mobilize, changing Lily, changing the bed, trying to get her back to sleep. Sometimes that attempt would take an hour, leaving us exhausted the following day.

One of the ‘solutions’ proposed was using pull-ups at night. I fought it. I fought it tooth and nail. She’s been in regular underwear for two or more years now. To me it was like taking a giant step “backward”. It was unthinkable to me to even contemplate that.

During vacation, we stayed in an acquaintance’s condo (actually an acquaintance of my parents). We had no spare bedding. The beds weren’t the same size. We knew that going in and I reluctantly agreed to allow her to be put in pull-ups “just for the vacation”.

And…she slept fine. And…she woke up dry.

Recently my wife has been a bit under the weather. A lot of the waking up in the middle of the night has fallen to me (I typically require less sleep anyway). The decision we reluctantly made was…go ahead and put her in pull-ups. I considered the pros and cons and rejected any pro that was simply “convenience” for me. The overriding pro was that she would be easier to get back to sleep, meaning she’d be better rested. Responding to the sound of her being awake didn’t mean mobilizing the bucket brigade, it meant going to her in her room, getting her to lie back down, and maybe snuggling with her to calm her back into sleep. It meant possibly re-establishing that “sleep through the night” routine that the summer had disrupted. From a convenience standpoint too, it meant not having to get up and sprint through darkened halls over unseen obstacles (i.e., the cat) in a potentially perilous race to get to her before she had an accident. It meant not only more sleep for her, but more sleep for me as well.

And although I justified it in those terms, something else occurred to me that pushed me to agree to make the decision. I asked myself, “Am I reluctant to put pull-ups on her because it’s a setback to her development? Or am I reluctant to put pull-ups on her because it’s something I perceive as a setback?” When I thought about it, I realized that it wasn’t related to her development. It was related to my perception of her development.

I remember thinking when Lily was diagnosed autistic that there really was no “mourning” period that some parents talk about because I felt in my heart of hearts…she is what she is. Diagnosing her autistic doesn’t change her, it just better describes what we might expect from her or for her. It helps us better help her. And what I hadn’t been thinking about with the pull-up decision was what better helped her and whether my expectations for her were reasonable. Yes, she’d been wearing regular underwear to bed for years, but yes too, we’d been changing bedding with some frequency, double-sheeting/padding her bed so that we could simply strip off an entire made-bed to find another made-bed beneath it.

We had been treating her as if she was fully 100% night-time potty trained but adapting our own lifestyle to trick ourselves into believing that myth. And it was a myth. Every night between 11:30 and 12:00 I would go get her out of bed, put her, bleary-eyed and wobbly, on the toilet so that we had a better chance for an accident-free night. For years. Double-made beds and nightly potty wake-ups just so that I didn’t have to put her back in pull-ups at night and admit that she just wasn’t there yet.

When I examined it all, I realized that she hadn’t lost ground; she hadn’t backtracked. I was just in denial of where she was.

Since the summer ended we’ve been putting Lily in pull-ups again nightly. She has slept through the night more often than not (though she still wakes up on occasion and needs to be soothed back to bed) and frequently wakes up completely dry. I am no longer interrupting her sleep. I am no longer stressing about whether I’ll make it to her in time. I no longer need my wife’s help to address early wake-ups. I no longer have to interrupt my own sleep in order to schedule a midnight potty trip.

The graphic above might still be true some of the time, but in this case the perception that deciding whether to put my daughter back in pull-ups for the night was a no-win decision was a misconception on my part. When I really searched my heart and accepted where Lily was, the answer was easy. And it’s been win-win for all of us.

About the Author

Jim Walter

Jim is both a father and blogger who helps others understand his first-hand experiences in parenting a child affected by autism. Jim’s late wife, Leslie Walter, was the long-time supervisor of Family Partnership Support here at Glade Run.

Read more from Jim’s blog.

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