As we all chuckle at the nonsensical action, it really is a hardship to keep some children clothed. This whole clothing ritual as it can take a long time, multiple years even to get your children to don clothing themselves. Many are unable to complete this task. It falls under the ADL’s (activities of daily living). In short, this is the expectations of every person to accomplish on their own volition.

Katelynn was dressed awaiting the school bus like any other day. She climbs those stairs which is a prideful activity all in itself. I think nothing of the day and continue about my business. When I get her off the bus, the driver and aid said we had an issue…(oh my what now my head screams) I was instantly tense.

Matter of fact voice came from the aid saying she was taking her clothes off on the bus. I confirmed all of her clothes, not just her sweatshirt? I know it’s not the time of year to wear a sweatshirt, however my child is always cold. Status post open-heart surgery patients can have this tendency. So, she said no her shirt and undershirt. Just recently Katelynn being eleven, is starting to wear a training bra. Every day she must lift her shirt for her MIC-KEY button to be fed. She has no shame. At home, no biggie. It’s her and I. Public is another thing. I really tend to make the unaware public really shrink away.

So this is a complex issue for a medically complex child: she took years (almost age 7) to don her own clothes, trying to teach a child to be proud of themselves when the public is scared of the unknown, years of therapy aiding her out of her wheelchair to increase her mobility for her ADL’s, ensuring to maintain her comfort in a unique homeostasis called Katelynn’s life, and many days teaching her ASL and to talk her 100 or less words.

This continues to be a tiresome balancing act. How do you teach a child who doesn’t understand? Doesn’t understand ethical or sociable standards? Has seen mom celebrate her mobility achievements with some of the weirdest mime on crack dancing to now be told don’t do that? Her comfort has been my first and foremost goal – maybe there was a stickaburr in her clothes that was the cause – I wasn’t there, I don’t know. I’m just expected to fix it – hours later.

How do I achieve the impossible. I shake my head as this is another uphill battle that didn’t occur in my presence, but I – mom all alone, are expected to fix and forever remedy this. I can only imagine what the next IEP meeting will consist of. Exhaustion just writing this makes me feel so overwhelmed.