Category Archives: Raised by parent with autism

Ranking the Grandchildren

My mother is quite clear about her order of preference for her seven grandsons. We all know that Anne’s younger son John is number one, a position I believe he claimed by saying a lot of clever things in her presence when he was a boy, statements that are permanently and liberally recorded in her diaries.

Ironically, Anne’s older son Jay originally held down the least-favorite position, a position I believed he secured by not saying enough clever things in her presence when he was a boy, as evidenced by the paucity of his quotations in her diaries. He has been supplanted at the bottom, however, by one of the younger grandsons. This new holder of the lowest rank is likely to remain entrenched there because my mother doesn’t like his behavior at all and has developed detailed fears about his future. She copes with his issues and unbearable future choices by ignoring his existence. “I try not to think about his future any more than I need to,” she has stated more than once.

I admit it is easier for me that my two sons, who live too far away to be useful to her, fall into the middle of the rankings. She has told me that they are both “good-natured,” which is nearly as good as her highest designation for other people: “so understanding.”

I’m not sure exactly which of my two is higher ranked. Parker, my elder son, has accepted the thankless task of helping her get through security at the airport, so that’s gotten him praise. And he’s quiet and polite and does well in school, so he’s right up there. But though she has also praised his ease in conversation with adults, there are some challenges to a claim to the number two spot: he doesn’t look at all like her side of the family, he never asks to hear her stories, he does not attempt to entertain her, and he is enrolled at a college she didn’t attend, where he is majoring in engineering, which she doesn’t understand and does not want to hear anything about.

Wyatt, my younger son, is athletic and amusing, providing a good source of entertaining stories that I convey to her. She was excited when a picture of him in his high-school football uniform was published in our local weekly paper. But on the other hand, he isn’t interested in directly telling her much himself or in listening to her reminisce, which marks down his value. And although he played Daddy Warbucks in the school production of Annie in fifth grade (wonderful!), he steadfastly refused her appeals to re-enact his role for her (so disappointing!). Naturally she couldn’t possibly have flown up to see him in the actual play.

My brother’s son who has Aspergers does well in school, and Mother loves any trait that she can believe shows her genetic superiority. He’s pretty quiet and sweet-natured, and even his quirky behaviors don’t happen to irritate her and risk his score. But he has not wanted to hear her stories, and while they both have fixed interests, the interests themselves do not overlap.

The youngest grandson committed a shocking misstep that permanently hurt his rank when he’d just turned two. That summer at the beach, he enjoyed pushing her walker when she wasn’t using it. While some grandmothers might think this was cute, the two-year-old’s enjoyment earned a harsh, “That’s not a toy!” from his horrified grandmother and a black mark on his permanent record. If he spent time adoringly listening to my mother, that longed-for devotion could overwrite the shocking walker-pushing incident and catapult him into the firmament next to John, the untouchable number one.

But tragically none of the grandsons has clamored to hear to her stories or put on plays for her. She thinks that’s because they’re boys. She hasn’t considered that perhaps it’s because she has shown no interest in them, never visits them and has made no effort to connect with them.

The grandsons are aware of the favoritism among their ranks and joke about it. Still, it must hurt number 6 Jay at least a little that his brother is adored while he is barely tolerated – even though he goes over to her condo to solve her many computer issues whenever she calls. Anne and I have tried to figure out the sources of her disdain for Jay. But we don’t know why. I guess he just failed to amuse her.

Well, there was one other incident. She bitterly complains about the time then-college-student Jay brought a paperback book with him to a family dinner at a restaurant, took it out of his pocket and placed it on the table during the meal. He didn’t read it or anything. He just took it out because it was uncomfortable in his pocket.

This scandalous display occurred at a meal he was invited to attend when my family and I were in town. So I was a witness, though I admit I thought nothing of it at the time – well, beyond some amazement that he could fit a book in his pocket. This wasn’t a fancy restaurant; it was a casual place with paper napkins, but she talks about it as if he’d taken off his shoes and put them on the table. The point is that Jay can do no good, just as his brother John can do no harm. If John put a book down on even the fanciest restaurant table, she would proudly comment on this delightful evidence of how much her favorite loves to read.

All of my mother’s grandchildren have only my mother for a grandmother. I feel sad that my kids have no experience of a warm and loving and helpful grandmother. I wish they had a grandmother like I had, my paternal grandmother who loved to see us and enjoyed doing things with us and for us, who never made us feel like we were any trouble at all.

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The Hardest Thing

Someone asked me to name the hardest thing about having a parent on the autism spectrum. Speaking only for myself, I guess I’d say it’s the radical imbalance in needs recognition and fulfillment. Everything my mother thinks she needs is red-alert urgent until the need is fulfilled. Anything someone else needs is of no value to her – maybe even stressful for her to consider – so she ignores it. If you try to get her to acknowledge your need, she squirms away from this threatening information and gets mad if you don’t quickly drop it.

We were well-trained as children to meet her needs and not to expect much from her. That dynamic hasn’t changed. Here are two examples of what it’s like to be her child:

Last summer my sister’s husband was badly hurt in an accident. Nine months later, he still can’t put any weight on one leg. He’s had multiple surgeries and excruciatingly slow progress. My mother knows that this is difficult for my sister and her husband. But this understanding has no effect on her demands. One recent morning she knew my sister was at the doctor’s office with her husband but still called her repeatedly. When my sister didn’t answer the phone after several calls, my mother got a staff member at her assisted living facility to call on her behalf. I guess she thought my sister could be tricked into answering. So what was the emergency? She wanted a laxative. Sorry – no, she desperately needed a life-saving laxative. She couldn’t grasp why my sister wouldn’t immediately abandon her husband and rush from the doctor’s appointment to the drug store and then race over to deliver the medicine right that minute.

On my wedding day 18 years ago, my mother insisted I do her laundry. There are zero extenuating circumstances that would make this demand reasonable. She’d been in town for just 3 ½ days and was returning home the next morning. She was physically capable of doing her own laundry and had laundry machines right outside her bedroom door in her condo. I know it seems hard to believe I couldn’t refuse this demand. You’d have to know how she behaves when she thinks she needs something to understand why I gave up and did her damn laundry. I had no trouble saying no to my kids when they were toddlers, but they were not in her league of frantic and escalating persistence. She can make you feel like you are refusing to let her in the house during a blizzard while hungry wolves are biting at her ankles.

Wait. After writing this, I realize I was distracted by the regular frustration of her blindness to our needs. I should have said the hardest thing is feeling that she doesn’t love me. I am just someone who can be called on to meet her needs. When I’m not being useful, she forgets all about me. I have always known that I am her least favorite child, though she came to appreciate me when I became an adult and could be more useful. But my siblings don’t feel loved either. It’s ironic that she has the least relationship now with the child who was her favorite when he was young. He isn’t at all useful to her now, and as a teenager he was quite rebellious, so she dropped him down in favor and rarely talks to him.

I understand that she can’t love me, but not all of me can accept that. I am – I let myself be – caught in this cauldron of feeling angry that she doesn’t care about me and hanging onto the enduring need to accommodate her just in case I finally locate the one thing that will open her heart.

We’ve all read lines like this: Our mothers are the first ones to teach us the true meaning of love. I know that kind of statement is supposed to be a beautiful tribute to motherhood. But not every mother is able to provide the kind of love that nurtures a child’s soul with the conviction that they are lovable and treasured and their needs and happiness are important. I didn’t get that kind of uplifting love from my mother. She couldn’t teach me that meaning of love. And that’s the hardest thing.

 

Copyright 2017 Sarah Meyer Noel