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
You are clearly a very good Mum, he’s a lucky boy to have you 💙
That’s kind of you, thank you. Sometimes I wonder. It’s just hard, because he needs so much more support than I know how to give.
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Of course you doubt yourself because you feel out of your depth sometimes.
But nobody is born knowing what to do – and you’re being a very quick (and more importantly, willing) learner!
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i think this is absolutely incredible – and you are definitely a good enough mother to your son! I feel some generational privilege int reading your post — not in terms of how old you are, but in how the internet and social media has revolutionized the lives of parents with kids who are neurodiverse. while my twins are, at 6 years old, fairly neurotypical, i feel like i am biding time on a diagnosis for one and the other struggles in some ways as well. there is so much available to me in terms of support as a parent – and because my kids can work within the fairly regular parameters for social engagement that are imposed at school, i know that i have barely scratched the surface of different support modalities out there. and i guess it also helps that they are still kids, and support is just easier to come by. are there are parents of neurodiverse kids you can talk to? your post hits me hard because i have several friends with kids who have various degrees of ASD (from high functioning to nonverbal) and i wonder how to best support them and their kids as they grow.
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Sometimes I envy people whose children were diagnosed even 8 or 10 years after my son, much less now; there are so many more resources now, so much more knowledge, not to mention actual insurance coverage for treatments. My son was diagnosed when he was 9 years old, and at the time, our insurance said it wouldn’t pay for any treatments because “autism isn’t curable.” It makes me sad because I know that early intervention makes a difference.
But I try to minimize the time I spend thinking about “if only we’d had X…”
There are some online groups of parents, yes, but mostly they are parents of much younger kids. I do have a friend with a son who has Down’s Syndrome. DS is very different from autism, but she deals with some similar challenges. And I have another friend in Germany who has a son with some similar challenges, and even though we are in very different contexts (in terms of social services, etc.), it does help to talk to her. It reminds me that we aren’t the only ones trying to figure this out.
Hopefully your friends who have kids on the spectrum are getting supports and treatment that will make a real difference for their children as they grow. If you want to be a support as a friend, I would say some of the best things people do for me is welcome my son, make him feel included, and just accept him as he is. I feel so grateful when people do that.
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“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.”
I really relate to this SB. You are inspiring me to a similar mindset. As we’ve discussed, I also have an adult son who cannot really cope with adult life, though he has an illness, MCS, rather than autism per se. Besides his physical issues, my son also has troubles with socializing and relationships. The grooming stuff also – though he showers, he won’t use deodorant and so he frankly smells a lot of the time. Trying to help him is exhausting, and he resists most advice. It doesn’t help that his dad also has some of these habits and characteristics and so laughs at my admonitions about deo, organizing, and life stuff, which makes it easier for my son to shrug all this off as unimportant.
My son also has good points – we often laugh when we are together for instance because we share a sense of humour. He is bright and perceptive, except about his own situation.
I relate to the feeling guilty about the past, and in my case, the past did cause some of my son’s issues. However, beating ourselves up is counter productive. And I also relate to the frustration of bringing up my son in therapy. Pretty much always the therapist was not especially helpful. They kind of don’t seem to get the situation – that this kid is a bit different.
I don’t want to make this comment all about me, but just want to say you are not alone in this situation. I can apply a lot of your points to my own situation. I especially like reflecting back some positives, instead of all the flaws.
I don’t think I could live with my son. He is too inconsiderate – up all night which would wake me up, hygiene not good, doesn’t clean up his messes. But I still want to interact positively and lovingly with him.
Hurray for the Good Mother Project. 🙂
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Thank you for your comment. It’s always very helpful to hear from someone who can relate, even if the situation isn’t exactly the same. It absolutely makes me feel less alone.
Before my son came home to live with us again, back in November, I experienced a ton of anxiety. I, too, felt like, “I can’t live with him” for the same kind of reasons you listed: he’s up all night, his hygiene, his messes. Overall, it hasn’t been as hard as we feared. We put him upstairs, in his brother’s old room, instead of downstairs near our bedroom, where he slept as a kid. It reduced the noise for us and also gave him more privacy. Then my husband found some technological solutions for some of the little things that drove him nuts. For example: my son never (or very rarely) turns the light out in the hall or the bathroom. So my husband installed motion-sensor lights that automatically turn off a couple of minutes after my son leaves the room. It’s been a brilliant solution. We don’t have to nag him, and the lights are not on all the time. We haven’t yet found a technological solution to the hygiene issue though!
Yesterday he made a big mess in the living room that annoyed me and then made me feel bad about myself again for not being infinitely patient. But I think it’s gradually teaching me about some more things to add to my Good Mother Project. So many, many lessons to learn in this life… !!!
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Dear SB: I’m SO IMPRESSED! You are Magnificent. Special love to Andres, his Dad and his Mom. TS
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Ah, TS, I don’t feel magnificent at all. I just had two kind of hard days with Andres, related to some spilled milk left pooling on the furniture and floor in the living room and also to our differing understandings of what it means to tell the truth. So I’m a little discouraged.
Nevertheless, she persisted!
P.S. Andres’ dad was my first husband, my ex, so while you are free to send love to him if you are feeling benevolent, I’ll abstain from passing it along to him. Instead, I’ll give it to my second and forever husband, Andres’ stepdad. 🙂
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