Jennifer Shaw

Hi! I hope all’s well for you.

I mentioned a while back that our autistic daughter’s had some recent toileting trouble. It’s not uncommon for her to have an occasional accident when her routine changes, and such was the case early this summer. Gone was her typical school day, after all, and despite the visual schedule I implemented, one day to another here at home has varied quite a bit.

No biggie, really. Par for the course, I figured.

However, about two weeks ago–the day we drove to Saratoga for our overnight trip–Daphne started having multiple accidents. Four a day on average, and there didn’t seem to be a clear pattern to them. She had them when she was fidgeting or dancing around, she had them when she was sitting still, she had them in bed. She had them if we were playing and talking to her and if she was momentarily alone.

Suddenly, I was scared.

Can she not feel it all the sudden? I thought. Has she suddenly lost control for some terrible physical reason? Is there something neurological going on?

My fears weren’t helped by the fact that, a day after we were home from our quick trip, we took her to Get Air, a trampoline park in the Burlington area, and she only jumped for about an hour instead of her usual two. Toward the end of that hour, she took herself into a quiet spot and laid down, pointing to her head.

“Does your head hurt?” I asked her.

She signed “Yes.”

And she’d been saying “Head hurt” on her talker for a while.

I was sick to my stomach.

Brain cancer floated through my mind. As did horrible scenes of hospital rooms and Daphne in bed sedated, pale, wasting away, her thick, beautiful blond hair gone. Giant Frankenstein stitches in her little skull.

Every parent’s worst nightmare.

I know this sounds ridiculous and melodramatic. But one of the hardest parts of her autism right now is our near inability to provide her basic medical and dental care.

She resists doctors, dentists, nurses, and hygienists. I do what I can to prepare her for appointments by using social stories, books, and practice sessions playing dentist and doctor, and it helps, to a degree. I think she has a basic understanding of what goes on during these visits, and she’s good about allowing me to brush her teeth and pretend to listen to her heart with our play stethoscope. But the medical people aren’t me. The real setting always feels different, and she can’t help but be wary given her sensory sensitivities and slower pace in understanding how the world functions. So, though she’s not aggressive with anyone, she only allows the medical and dental staff to do a fraction of what they ought to. She’ll let the dentist get quick glimpses into her mouth; she’ll let the hygienists brush her teeth with a regular toothbrush; she’ll let nurses weigh her and measure her height; she’ll let the doctor listen briefly to her chest and back and maybe look into her eyes and throat. That’s about it.

As a result, she hasn’t had a thorough medical checkup in years, not since she was a preschooler. She’s never had a full teeth cleaning.

So, I’m never 100% sure she’s entirely healthy. Plus, she can’t tell us precisely if something hurts given that she’s nonspeaking. We go by the major signs, then–temperature, appetite, sleep habits, energy, mood, physical growth, and hair/skin quality. All fine, usually. But you can see how her sudden incontinence and odd behavior would worry me.

I told myself, hang in there. Her Well Child checkup is in five days. Talk to her pediatrician and see what she says. Hopefully, Daph will get back on track before then.

But she didn’t, and I agonized about what the doc would recommend. Were we going to have to submit Daphne to several tests? Even blood work would require either physical restraints or sedation. The idea has nauseated me ever since a nurse practitioner fretted about sending Daph on to the ER a year or so ago when she had a lingering fever.

“How would they sedate her?” we’d asked.

“Ugh, probably with ketamine?” replied the poor, harassed, overwhelmed woman, who was working the Urgent Care that Saturday all alone except for a nurse receptionist. “I don’t want to think about it. It’d be terrible, traumatizing.”

Oh Jesus.

I’ve had a fear of hospitals for Daphne ever since.

So that was simmering into a brew of terror in my poor mind. Her dad’s too, I think, though he was trying to be rational and reassuring for me, insisting he really saw no indication there was anything serious going on that would warrant such tests.

I hoped he was right.

My nerves were frayed by Thursday night, however, the evening before her 8 am checkup. I was so worked up that I lost it on my poor husband, who’d raised his voice to reprimand Daphne for stomping too hard on the floor. I yelled and cried, exclaiming that I couldn’t take all the unpleasantry anymore. We didn’t speak to each other the rest of that night.

*Sigh*

Luckily, this little tale has a hopeful ending.

Daphne’s pediatrician, Dr. Reynolds, was wonderful, despite the fact that the entire hospital was freaking out Friday morning over Crowd Strike’s worldwide internet outage. She was sweet, warm, and listened carefully to my descriptions and speculations. She was quick to tell me everything I’d said sounded normal… I hadn’t heard such sweet words in a while.

Long story short, the doctor agreed that the toileting regression was probably caused by a combination of things, both circumstantial and physical, the physical one being constipation since, if a child’s bowels are full, that can press on their bladder and cause accidents, this being especially true for a child already struggling with sensory challenges. She concluded this based on my report that Daphne had passed a large, painful stool the day her continence plummeted. The doc recommended prunes and pears and an over-the-counter laxative if those weren’t working, and for us to observe the quality of Daph’s excrement so we could tell if she was regulating or remaining constipated (apparently, a “soft, feathery log” is what we’re all aiming for, lol). She predicted Daphne would get back on track once her BMs were more regular and healthy. She was also able to tell me that Daphne’s growth over the past year has been fantastic, and she had no concerns at all in that area.

A weight certainly lifted, and I’m sure my mood reflected that. The next day, the number of accidents went down, and Daph continues to do better. We’ve had a few days, including yesterday and so far today, where she hasn’t had a single accident, though we’ve gone back to setting timers and constantly reminding her to sit on the toilet the way we did when we potty trained her years ago. It’s tiring, but that’s ok. I’m feeling better about things, and so is Daph, I believe. She’s even eating the pears I bought her, bless her heart.

So it goes as an autism family. Even the basic things feel incredibly difficult sometimes, but we forge ahead.

As if it were a sign that things are looking up (at least for now), we had a fantastic family day on Saturday hiking a gorgeous waterfall trail, the Flume Gorge, in New Hampshire’s Franconia State Park. Daphne had a blast–she was fascinated by the main waterfall, and she loved climbing up and down the rocks all along the path. She was smiling and giggling the entire time, and she even found a stick that made her so excited she said “stick, stick, stick” over and over on her talker. She’s never been so happy and engaged on a hike, and it was beautiful and uplifting to see.

And she didn’t have a single accident all day.

It’s the little things that make us happy, isn’t it?

I’ll be back on Thursday for a writing update. I’ve decided to try something different–I’m planning to post twice a week (Tuesdays and Thursdays) in an effort to shorten my posts but still relay everything I want to share.

So be on the lookout for writerly things in a couple days. Specifically, an update on my experience attending virtual writing camp (it’s been great!).

For now, be well, and thank you for reading. As always, feel free to comment and share your similar experiences. If you’re a special needs parent–or even just a parent, period–I’m sure you can relate.

Much love!

XOXO,
Jenn