Kim's Story, Chapter 8: Our Autism Journey

Kim’s Story, Chapter 8: Our Autism Journey.
When a healthy baby becomes a sickly toddler,
and a nebulizer becomes our most necessary accessory.

I woke up in the middle of the night, my heart pounding.

What was it? What had awakened me?

Yes, there it was. A dry, rasping cough.

Oh, no, not again.

This little girl, whose first year was mercifully free of colds, sniffles, and ear infections, began to make up for “lost time” in her second year.

Kim’s Story: Our Autism Journey

We’ve shared about Autism Spectrum Disorder before, here, here and here, but now we decided to tell Kim’s story, and our journey on the spectrum (without knowing we were there). Because when a child is on the spectrum, the journey involves the whole family. This article studies the effects of autism on the family.

Kim’s Story: Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, Chapter 7

This post is Chapter 8.

Kim’s Story Chapter 8:

Kim didn’t always wake up when she started coughing.

She was so used to it, and so exhausted, that she could cough for awhile before she awoke enough to cry.

I would wake up at the first dry hack, and wait tensely for the escalation. Praying that this was just one cough, and didn’t mean she was getting sick again. Praying we wouldn’t have to get out the breathing machine.

The coughing petrified me.

Not from the angle that she would get too sick, or that she would have to go to the E.R.

It was more that I hated to use the medicine on her that seemed to be the only way to loosen her lungs.

Just the name of it sounded scary. Albuterol. What was my tiny daughter inhaling? What were the side effects? The immediate side effects were jerky movements. Did that mean her brain felt jittery, too? Like drinking too much coffee, only multiplied by x amount because she was so little.

Would there be permanent side effects? What were they? These are questions I should have asked.

But her pediatrician assured us this was the best way to treat her chronic bronchiolitis.

After all, his only concern about her was her weight. Height: mid-range on the growth charts. But she was so slender, and rude people called her skinny, starving, malnourished. I spent so much time coaxing food into her mouth, and it was so discouraging when people thought I didn’t feed her.

A conversation would go like this:

“Kimmy is coughing again?” With a side-eye look at her tiny body. The wheels inside that head were no doubt turning, “Well of course she’s always sick, poor thing. She’s so skinny.” Some people said those words out loud. The worst was when words like that were said to other people, and then we got the “she said that she said” and they wouldn’t have the nerve to come out and ask us what really was happening. And express genuine love instead of criticism. Why did it all feel like judgment? The feeling of “bad mom” escalated, all the while loving my daughter more and more, and praying she could be normal and not attract so much attention. So much negative attention. I felt like hiding away, living life in our own little world where no one could see us.

“Yes, she’s coughing,” I’d say. “But it’s over a month since she had her last episode.”

Or,

“She’s done really well for the last 3 months. I’m hoping she’s growing out of this.”

Praying that I wasn’t lying, because actually there was that one night we got the nebulizing machine out for a breathing treatment.

In all reality,

the chronic bronchiolitis did not completely define our lives.

She would go for months without coughing.

Then, when she got a cold, and a dry cough that didn’t produce any phlegm,

our lives went into hospital mode. The breathing machine, medicine and saline stayed nearby at all times,

and our cuddle times became the 45 minute breathing treatments.

We dripped a little albuterol in the cup, spritzed 3 shots of saline, then held the cup over her mouth and nose.

She got to where she didn’t fight it, because she knew she’d feel better afterwards.

Often, she’d fall asleep in my arms, and when the cup was dry, I’d switch off the machine, push the rocker/recliner back, and we’d both nap for awhile.

Till the next coughing fit. Which hopefully wouldn’t be until 3 hours later, which was the interval we needed to wait between treatments.

If we used saline without the medicine it could be done oftener, and saline alone could bring a certain amount of loosening in her lungs.

Other times, if it was too soon, and she was really bad, I went in the bathroom with her, shut the door, and turned on the shower full blast, hot water only. Soon we’d have a faux sauna going. I would sit on the toilet and hold her face down on my lap. Then pummel her back with closed fists, loosening the glop that clogged her lungs and kept her from productive coughing. I tried not to pound too hard, but I wonder if she had a sore back afterward? I never knew, of course. And we did have to pound a certain amount. Hard things to do to. Hurt a baby so she can feel better.