Letting Go of (Some) Control

If my kid were typical, he would probably have flown the nest by now, and would have the right as an independent young adult to make poor choices, learn from his own mistakes, and realize, at some point, that his mom was right all along.

As it happens, my son is fluffing up those twigs to stay in this nest for awhile. Due to his disability, he needs full-time care and may never be fully independent. 

But that doesn’t mean he shouldn’t have some level of agency to make his own dumb decisions as young adults do.

In fact, I’m now legally obligated, as his court-appointed guardian and as his official attendant care provider, to take his preferences into account when making decisions for him and to allow him autonomy whenever possible. An emphasis on respect and personhood and positive behavior support is built into the trainings for “home and community-based service providers,” to protect individuals with disabilities against the abuses seen in the institutions of the past.

Of course as a parent, I’ve always* given him choices, creative accommodations, and positive behavior support (*Mostly. When I’ve had sleep, coffee, and an occasional date night). But sitting through the trainings to become an “official” caregiver to an adult with a disability reminded me that I have to learn how to give him more control, and let go of some of my mom “rules.”

He still has many required tasks. He needs to brush his teeth and take his meds and do his household chores (mostly). Sometimes I have to put my foot down because of a safety or medical issue. 

But --

He refuses to wear long pants when it’s freezing outside? OK, it hurts me to let him do that, but luckily we live in the desert so there’s no real danger here. 

He doesn’t want to read a book? OK, shoot, that’s disappointing. But it’s not a life or death thing. 

He wants pizza for dinner again? Noooooo…. OK, I’ll keep working with him on how to make healthy food choices, and hey, how about that cauliflower crust?

These revelations have helped me to detach a little, to try to be that easy-going, caring provider to an adult, and less of that nit-picking parent who just knows better.

I know that I would not be happy to see another attendant care provider arguing with my son over what shirt to wear or what food to eat. I would not want his provider to get snippy when a skill instruction falls on deaf ears or when he just won’t get out of bed.  I want to be the kind of calm, intuitive, respectful provider that I would hire.

But I’m also still the mom. That identity comes with parental opinions and worries that are not easy to turn off.

So, I will admit to setting up the environment so that his autonomous “choices” are still ones that I can live with.

He chooses what clothes he wears, preferring athletic shorts and t-shirts—in any weather and for all occasions.

But the mom, who knows his habit of grabbing whatever is on the top of the pile, often sneaks into his closet, pre-arranging the shorts and shirts on his shelves to increase the probability that he’ll choose items of clothing that at least match.

In his attached apartment, he has full access to his own pantry and fridge. We decided early on in the building process not to lock him out of things in his own apartment, and to instead be strategic about what we store there.

So the mom, who still does the shopping and cooking, keeps his choices within certain healthy boundaries. She stores excess food in her own pantry, experiments with whole food, less-processed recipes, and hides most of a batch of (low-sugar) cookies in her freezer, replenishing her son's cookie jar at a pace that hopefully teaches some moderation by default. 

But when he decides he’s going to start watching a movie when the mom believes it’s bedtime, it’s hard to let him make that choice. 

I have not yet resorted to the old “unplug the TV and say it’s broken” routine that my parents confessed to using when we were kids. 

Luckily, the mom can give in on this one. The Dad (also more of a night owl) can take over with the nighttime routine after the movie. The mom can let the other adults in the house make the choice to stay up late, and she can choose to get herself to bed at a reasonable time.

This way, when the son inevitably has trouble waking up on time the next morning, he’s more likely to hear the gentle encouragement of his kind attendant care provider, and not the I-told-you-so grumblings of his sleep-deprived mom.