11. Giving Care

August 5, 2021

Oh, hi.

I unexpectedly took a break from my publishing schedule, so this issue is coming to you a couple of weeks late. But who’s counting (besides me)? 

Things around here are mostly the same. 

The Suns sadly lost to the Bucks – better luck next season – but I really got a lot of good cardio in during those games! 

We’ve picked and pickled jalapenos. I saw two quail walk along the back fence once, but they had no chicks with them…if this was the same couple, well…better luck next season, I guess.

The boy has returned to his day program for just a couple of afternoons a week, but he is still mostly at home. 

I successfully (so far) removed the toilet paper photo from my hall bathroom, and added a photo of his bed (next to his bed) that is encouraging daily bed-making without any reminders from me. It’s really an amazing intervention.

I’ve introduced my picky eater to a few new foods with mixed results – cauliflower crust pizza (no); veggie spring rolls (no); Orange Chicken with edamame ala PF Chang’s (yes!).

But our son has had a bit of a rough time lately, and we’re still trying to figure out how to help him feel more settled and less irritable. This past month, I’ve had check-ins with regular and new doctors to regroup on diet and meds and moods, tracking his physical and mental health (which is hard to do when he can’t describe his own symptoms). Still on a bit of a roller coaster here.

In a follow-up call after an appointment with my son’s doctor, a counselor asked how things are for me as the caregiver. Am I getting any respite, sleeping enough, eating right, getting exercise? Do I have an activity that brings me joy?

Yeah, yeah. They’re on my “to do” list.

I’ve gotten this type of question a lot over the years from my son’s doctors, therapists, and teachers. In the middle of talking about my son’s goals and challenges, often the questions will pivot to me. 

How are you doing? Are you taking care of yourself?

I often resisted that discussion. Those questions are intended to help me manage the status quo, but I wanted their help to move us out of our current situation. I didn’t want to cope. I wanted things to improve. 

Don’t worry about me, I’ll be fine as soon as we figure out x, y, z. As soon as my son feels better.

Sure, I guess a support group might help me. But where are the creative thinkers who can make cognitive behavioral therapy accessible to the non-verbal? 

Sure, some time away with my husband would be refreshing. But when will the state realize that good respite providers are worth much more than $11/hour?

Sure, I could choose something I enjoy doing outside of the house. But where is the innovative, supported social program to allow my son to find the thing he loves?

I know now that I can’t wait for my son to feel better before taking care of myself. My son’s autism is a lifelong disability; my caregiving duties are more like a marathon than a sprint. I need to maintain my own health and sanity in order to take care of his.

That’s the truth, but while I understand the self-care questions a little more now, I still don’t like them. How can I feel contentment when my child is hurting? 

A piece of me will always be tethered to his health and his happiness. 

I guess that’s what motherhood is.

I am trying to exercise and get outside and take real time off from my seven-day-a-week job. My husband and I both got separate weekend trips away in the past month, and that was very good. We are lucky to have work and resources and good friends and family and each other. All of that helps. 

And, of course you know, part of my self-care regimen is writing. Even though I am late in posting here, I’ve got several drafts that I’ve been gnawing on for weeks. Hopefully, they’ll sort themselves into something worthy of sharing soon.

So, we are here, giving and taking care. Thanks for letting me catch up with you and hey, take care of yourselves, too, okay?