Susan's Blog

Tuesday, December 20, 2005

Sweating the Small Stuff

I tried selling this piece everywhere: WashPo, Times, Globe, O, and nobody was buying. It is now grist for the blog.

What do you do about loving somebody who can’t love back? Given that all my life I have been the garden-variety insecure, low-self-esteem kind of female who has soured countless relationships with my demands, my inability to take things at face value, and my need for evidence of love, this is a particularly thorny problem. Because now that I have an autistic son, and I must absolutely do without.

When I decided to have this baby, I remember thinking to myself, “Now I will always have someone who unequivocally will love me.” Of all the things I worried about while pregnant, I never imagined autism. Not with an incidence of 2 in 10,000. Who thought of autism? I thought instead about how bad it would be if my child became someone horrible. “Please make sure he is not a criminal” I’d whisper. Or what if he died before me? “Please make sure he is healthy.” I should have been more specific, but who thinks, “Please make sure he is not autistic?” Then you’d also have to add the litany of other unwanted conditions, personality types, situations. “Please make sure, no cleft pallate(?), no cancers,” or “Not someone who invalidates others’ feelings, bullies, or teases.” But praying for your baby can’t be like ordering a la carte.

There have been so many things since then I’ve adjusted to, given my blithe naivete at the beginning: every milestone an agony of waiting, hoping; figuring out what I could expect from Nat, when even autism experts couldn’t tell me; figuring out whether and then how to give him medication; breathing down the necks of his teachers while knowing there’s no way anyone could do more for him. I ache for him because of what he will never have, never be. But the way I ache to get something obvious back from him is probably the hardest of all autism adjustments.

Nat is sixteen years old now, which means I’ve spent the past sixteen years mining every interaction for significance. Teenage boys are already so evasive by nature, using their moodiness and their Ipod plugs to define the boundaries between themselves and their intrusive parents. Perhaps, then, I have had a jump on my friends who are only now facing the stony silences and the blank stares. Autistic teenage boys are just ganglier versions of their plumper, youthful, isolated selves. One-way conversations and lack of eye contact have been a part of my experience as a mother since Nat was two.

And yet, that doesn’t really make it any easier. Take eating, for example. Sometime last fall I happened to offer seconds at dinner time. Maybe I hadn’t done that before, because I assumed that everyone would just ask or take it themselves. Nat never asked for seconds; he would always get up from the table the moment his plate was empty. This time, hearing me say, “Anyone want some more?” he came back to the table and proceeded quickly to devour the large second helping I had given him. When I offered a third helping by asking the same way, he took it. I realized then, my stomach plummeting heavily with guilt, that all this time he probably would have eaten a second helping of food had I asked in just the right way. You ask in just the right way and you learn your child is hungry. What else am I missing, by not asking in the right way? I shudder to think of it.

On the happier side, I have learned to take delight in every successful conversation, no matter how lumpy his speech is; at least he’s talking to me, I figure. Or, like when he starts whispering to himself, and opening and closing his hand in rhythm with his words, I know he’s happy. I look for the puppet hand. I know that he likes doing something when he jumps up immediately and shouts, “Yes!” before I even finish asking. “Do you want to go outside and—“ “Yes!” And I know that when he doesn’t want to do something, he acts as if I’m joking. “Nat, should we vacuum before watching a video?” “Yes—No!” He mouth stretches into a grimace. “No, Nat, I’m not joking. We need to vacuum.” “No vacuum.”

Every new skill I can teach him is cause for giddy celebration and bragging. Nat is swimming in Special Olympics. Nat didn’t grab the rope in the backstroke race. Nat talked on the telephone. Nat no longer pinches his teachers. In my odd little family, sweating the small stuff is key, as are making mountains out of molehills. Face value is cheap; creating meaning where there may appear to be none is golden.

A long time ago, I realized on some level that Nat did not seek out my affection, in much the same way that I recently realized he did not seek more food even though he was hungry. It took awhile for it to register fully with me, because I was always hugging him, kissing him, picking him up, as a baby, a toddler, and a little boy. We did not lack for loving contact. But what I also did notice, in the earliest days of his life, was that I had this strange feeling a lot of the time, of love rising up in my throat like a wave, falling towards him, and then landing somewhere near him, but never met by him. I felt like he didn’t really need me, even though the evidence was there that he did: he cried for a bottle or a diaper change, he whimpered for sleep. If I had taken that at face value, I would never have feared that something needed addressing, and his autism would have gone undiagnosed far longer than it did.

So now, sixteen years later, I am no longer an autism virgin. I am hardened and wise. I understand so well now that wave of love is going to rise and fall like the tides, just as immutable. I also understand that whatever I need from this son of mine I am probably going to have to get someplace else, or try to find by searching his flickering glance. But every now and then, when I ask him for a hug, and I notice he is clinging to me a tiny bit after I have already begun to pull back, there is still this surge in my heart that tells me all I need to know.


I have a 6 y/o with autism and have felt this way so many times. When he was a toddler I simply felt like a tool. It was me who he would go to to drag me to the tv and shove my hand towards the vcr, indicating that he wanted to watch a movie. As he got older and became more verbal, he was better able to do things for himself, which, looking back, created even less opportunity for he and I to connect. Now I know Sam loves me in my heart and I do see the external signs in the way he runs to me as he gets off the school bus or breathes in my face at 6 am every day, my own personal rooster. But I know it is so different from what other parents experience b/c I have a 9 y/o son who does not have autism. He affirms his love everyday in so many ways that it sometimes makes me feel unworthy. I feel my love for him reflected back and magnified as he asks if we can go out on a “date” (maybe to a movie or just to TGI’Friday’s for dinner), just the two of us. I guess what I am saying in a long-winded manner, is that it is really hard somtime to feel requited love from your child who has autism, and you have to know in your heart that he loves you, but b/c of his autism, cannot express that love in the conventional ways. So we look for the subtle signs and just have to know that the love is there as long as we accept it as it is, not as we wish it could be.

— added by Sam's mom on Tuesday, December 20, 2005 at 9:57 pm

The comment by Sam’s Mom is very accurate; we’re not talking about a lack of love, but a different way of expressing it.

It has been said that “the source of all conflict is failed expectations.” That is a wise observation. It can be particularly hard to deal with a mismatch of expectations about how to show love in a family.

In the context of gender differences, it’s not unusual for a woman to feel that she needs more evidence of love. Women often expect love to be shown through words, while men have more of a focus on practical acts. If you feed a guy a good meal every day, he probably knows you love him. Many women, on the other hand, want regular verbal reassurances, delivered with just the right body language and tone of voice. Some guys don’t know how to do that (as shown by the long rows of self-help paperbacks in the bookstores) or may not even know that they are expected to do it.

When family members are of different neurological types, the mismatched expectations can become even more noticeable. That doesn’t mean love is lacking; it means that we have to make more of an effort to see the love as it is.

— added by Bonnie Ventura on Wednesday, December 21, 2005 at 12:18 am

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