Or, How to be the best mom possible to my son with autism (without driving either of us crazy)

I feel like you all, my Word Press tribe, are a good friend that I haven’t been able to talk to for a couple of months. I have so much to tell you! And one of the things I really want to share with you is my Good Mother Project.

Nope, it’s not about my mother. Nor about my mother wound. Nor about how much I wish E, my therapist, would mother me (sigh). It’s about my efforts to figure out what it means to be a good mother to an adult child with developmental disabilities.

At some point a month or more ago, it became very apparent to me that my son’s initial good efforts after his return home had dissipated. Andres had settled back into his old routines of staying up most of the night, messing around on Facebook and with his game apps on his tablet. He rarely got up before noon, and sometimes he wouldn’t come downstairs until late afternoon. He went more than two weeks without changing his clothes at all–really, I’m not exaggerating. He often didn’t leave home for more than a week at time, not even to go in the backyard. Yes, it’s winter, but it’s not that cold where we live. His diet consisted of 1) Cheerios, raisins and milk; 2) gummi bears; 3) whatever I made for dinner, minus perhaps the salad.

As you can imagine, it’s very hard to see him live this way. When he was younger, we nagged about a lot of those things, hygiene, eating habits, changing clothes, going out, sleeping on a somewhat regular schedule. But it’s no fun being a nag. Besides, he’s an adult. It’s really not my place to say anything when he goes online and orders 5 pounds of gummi bears from Amazon.

But if I’m not going to nag, what am I going to do? How do I live with this person who is both adult and also not adult? How do I maximize his independence and yet also protect him? For example, he has gone for three job interviews that have not gone anywhere. It’s not that surprising, since his hair and clothes might not be very clean and because he has a hard time reading people’s reactions to him. I make a few suggestions, but I can’t do anything if he doesn’t heed them. And then I think, even if he made a good impression and got the job, could he do it? I doubt it–and I feel disloyal for saying that.

Anyway, this set me off on a new round of doubting myself and wondering what it could even mean to be a good mother to Andres. I talked about it with E, but she had very little to suggest. She is used to working with people who need to let go or set boundaries with their adult children, so she tends to offer me strategies that involve being firmer with him. But the thing is, he’s not like other adult children who are a little slow to launch. He genuinely experiences the world very differently than we neurotypicals do. His reality is not the same as my reality. And he’s genuinely not capable of doing many things that adults do (though I’m not always certain where the line is and if he could maybe do just a bit more?).

Near the end of a session with E in which we talked about this and I felt increasingly discouraged, I told her, “I think it’s not helpful for me to focus on what he isn’t doing or what he can’t do. I need something to lift me up. I need a vision of the best possible way I can mother him. If I can create that, I can refer back to it when I’m confused and discouraged, and it will help orient me to the way I want to be in my relationship with him.”

She liked this idea; E is very much in favor of thinking about who we want to be in the world and then taking the necessary steps to embody that vision. So I went home and worked on it over the next four or five days. The following week, I brought it to group and said I wanted to run my first draft by them and see if they had any suggestions.

A good mother, I said, provides both structure and support, firmness and softness. Over time, the structure and support both typically decline, as a good mother works to establish the independence of her children.

Some children, like my son, can never become fully independent, however. It’s not their fault; it just is. Some children, like my son, encounter more than their fair share of rejection and harshness in the world, because the world isn’t always kind or patient with people who are “different.” Some children, like my son, are unable to create structure for their own lives.

In such a case, what are the tasks and responsibilities of the good mother? What does a good mother do? And furthermore, what do I need in order to be that kind of mother to Andres? I came up with this initial list:

• I trust my instincts and good judgment to help guide me. I welcome and consider advice from others, but I remember that I know my child better than others do.
• I forgive myself for missteps on this uncharted path.
• I minimize the time spent regretting past decisions or asking, “what if I had done x…” but I accept that I will sometimes wonder if things could have been different.
• I take good care of myself so I will have the best possible energy and be in a good frame of mind to care for him.
• I cultivate my curiosity to learn more about how my child experiences the world. I listen to him.
• I remind myself that I am happier when I accept things the way they are, rather than beat my head against reality, asking it to be something it’s not.
• I protect my child from unnecessary cruelty and suffering but not from the natural consequences of his own irresponsibility. [Note: this is a particularly hard one, since I’m not always sure where the line is between “just who he is” and “irresponsible.”]
• I give thanks to the friends and family members who show kindness to my son and help me be strong and effective with him.
• I strive to be patient with friends and family members who cannot make space for Andres to be who he is, and I distance myself from unhelpful opinions.
• I make opportunities to have fun with my child.
• Realizing that my son gets too little appreciation from the world, I consciously hold up a mirror for him, so he can see his talents, skills, and the things people like about him.
• I plan ahead to ensure there are financial resources to keep him safely housed after my death.

The response in group was gratifying; the other women were very encouraging about this approach. I like it too, because it feels empowering–a big contrast to how discouraged I feel when I focus on all the things he can’t or won’t do.

As I said, I also asked them for suggestions. One woman in group suggested I specify what I mean by “take good care of myself” so that when I feel overwhelmed, I will have already written out some self-care ideas that I can draw on. Another said that even though I have a hard time figuring out what is “irresponsible” versus “normal for him,” I might be able to write down specific examples when they happen, and over time from the examples, I might figure out what that line looks like. I think that’s a helpful idea.

So then I went home and shared this list with my husband. My husband, as I’ve said before, is emotionally quite stable, very resilient, not very knowledgeable about psychology but incredibly supportive. He’s been great with my son, but there a few things that drive him crazy. Anyway, when I read the list to him, his first reaction was, I love that! Just hearing the list makes me feel more relaxed and accepting.

Then I asked him if anything was missing, and as we talked, we realized we needed to add some things. For example, how do we deal with the frustration we feel sometimes about wasted money and resources, about how often my son loses things or breaks things? Also, what about my son’s relationship with the truth? It’s a very, very flexible relationship, which is an especially aggravating trait as far as my husband is concerned.

So we still have things to ponder, no question. And I’m sure additional challenges will come up that we haven’t considered yet at all. But still, this Good Mother Project was probably the best thing I did in January. The shift from noticing all the things about my son that I wished I could change but couldn’t to focusing on what kind of mother I want to be in this situation I wouldn’t have chosen–this was a seismic shift.

And it occurs to me that in many ways, it applies to every part of my life. I get mad that I don’t have more energy and can’t work 8 hours a day anymore. Well, I can fret about that (and I do sometimes), or I can say, given these circumstances, what do I want to do with the energy I do have? In fact, this is part of what led me to reduce my therapy time. Thinking about things this way gives me agency, a sense of power over my life.

That’s a tremendous gift, amazing and inspiring, and it specifically came to me because I am the mother of a loving developmentally disabled child.

CREDITS: Photo by Bruno Nascimento on Unsplash