For most parents and most kids, adolescence is a time of great emotional development and differentiation. They don’t want to be around us, and at some point in the life of a teen in your house, you’re pretty ready for them to leave, too.
It happened like clockwork with my typically developing daughter and me; first she pulled away, then we fought. Then I got so tired of her mess and attitude that I didn’t even cry (much) when she went to college in Vermont. Now that she’s 26 we’re very close, and yet we’ve managed to forge our very own, very separate lives.
Things have always been different for Caleb. My son is four years younger than his sister, and has a significant intellectual disability, epilepsy, autism, and is deaf. Differentiation with him has been all on me. When my daughter was fourteen, she started the battle that is growing up. She became embarrassed by my clothes and the things I said in front of her friends and let me know all about it. She defied me and talked back. She was identifying herself as a person who was not like me – a step so important to becoming an adult.
Caleb has never cared what I wear, and at 22, has never once said no to a chance to hang out with me. I’m his favorite person all day every day. If I would stay home from work and cook pancakes for him, he would never choose to leave my side.
And this is great. It’s wonderful to be someone’s favorite person ever. For twenty-two years and counting. All day every day.
Also, it has become pretty exhausting.
When Caleb was ten, I had to insist he finally potty-train. He would sit on the toilet for hours with me on the side of the tub feeding him tootsie rolls. It took about a month and not a few glycerin suppositories, but we did it. He’s completely independent with toileting now! It turns out, differentiation is going about the same way so far: slow, deliberate, and very late.
Caleb was 17 when we finally couldn’t care for him at home anymore and he moved into a group home. You’d think that would be a step in the right direction, but you’d be wrong. Every weekend, I brought him home, catered to his whims, bathed him, and tucked him in at night. Then every Sunday I would return him, showered and shiny, to his house. It wasn’t until Caleb was 21 that I developed the emotional separation I needed to help him begin to differentiate. It started with skipping a weekend. Then, instead of bringing him home, I started visiting him at his house. Sometimes, I would only stay long enough to take him to lunch or go to the park.
There are many reasons this separation makes me incredibly nervous: the staff at the group home need a lot more training than they get, and I sometimes seem to be the only one providing it. Caleb can’t use a phone and won’t pay attention to me on Skype, so there’s no contact with him if I don’t go visit. I often arrive at his house to find that no one has made him shave in a week, and that his laundry is mixed with his roommate’s and the clothes he’s wearing do not fit. He has medical issues, and I’m not sure staff understands the right things to say to doctors when they take him to appointments. I’m not sure he will be cared for adequately if I am not intimately involved.
It’s a fuzzy line we walk. I hover somewhere between over-involving myself to the point of abandoning all hope of either of us being an independent adult, and neglecting to advocate for this vulnerable person who I love. How do you avoid codependence with a person whose needs are nearly infantile? How do you stay mentally healthy when you spend decades making sure someone else’s basic needs are met, regardless of whether yours are? How do we grow up, Caleb and I, into an adult relationship?
Caleb recently moved into a new group home. Every Sunday I visit, help him shower and shave, and separate his laundry. I take him to lunch, to a movie, and shopping for his favorite snacks. I tell myself that this will change soon. That someday, he will be independent of me, even if he’s not independent of help. He has to be. I am mortal and very likely to die before he does. That’s not the only reason to differentiate, but it looms large for parents of very disabled people. It’s not healthy for them or us to be completely enmeshed forever. While shaving my adult son’s face and brushing his teeth last weekend, I thought about how we’re doing with this growing up thing. I guess it’s still a work in progress.