Tag Archives: growing up with autism

The Sunrise Experience

I know that what I write about my mother is hard to read. I understand the desire for a silver lining or upbeat message to offset the negatives in my stories of having a mother on the autism spectrum. I keep looking for those miracles too.

So here are some positive stories about my mother.

One summer morning when her four children were very young (I can’t have been more than 5), she woke us up before dawn and ushered us to the backyard to see the sunrise. I still remember that morning. We sat quietly on the patio, listening in the dark to the birds narrating their search for breakfast. We ran to the front porch when we heard the milk man arrive to fill the metal box with glass milk bottles. We had never seen him before and had never thought about the man or the journey of our milk. We sat back down as the light colored the sky and the neighborhood began to issue the cadence of their awakening.

My mother wanted her children to share her interests. She read us the books she’d loved as a child and wanted us to love them too. She taught the first three of us to play bridge when we were in grade school and sometimes called us to the dining room table to play with her.

She volunteered to be the librarian for our grade school when they started a library. My sister and I would sit with her on her white bedspread covered with lists of books on long sheets of paper, discussing which books she should buy for the school. She let us feel that she respected our opinions.

She – and my father too – made sure we did not absorb the racist messages that were pervasive in the Southern city where we grew up. We heard from our parents that racism was wrong and that people should not be judged by skin color. We learned that we could hold a minority view and be proud to express it.

My mother cannot help her lack of empathy and her obsession with her stresses and needs. I know the world is a challenge for her, and I appreciate that the mysteries that confront her daily have not made her mean.

Copyright 2015 by Sarah Meyer Noel

Advertisements

Mother’s Day When Your Mother Doesn’t Care That Much About You

I saw a series of photos online today that showed mothers and daughters on the daughters’ wedding day. The pictures, must of which showed the bride getting ready for her wedding, were full of joy and caring. When I look at these pictures, I can’t help but feel wistful. My mother had no interest in being involved with any aspect of planning her daughters’ weddings. Nor did she want the traditional scene of helping her daughter dress. My mother didn’t want to be with me to adjust my hair or zip up my dress or tell me that she was happy for me. She did, however, want me to do her laundry after the reception.

It’s 3:00 on Mother’s Day, and I am ambivalent about calling her. It’s not that she doesn’t love me in her own way. It’s accepting that her way of loving anyone else is so shallow. I know she feels love, but she does not feel for her children. We have always been valued for meeting her needs. She has always been unable and unwilling to think about ours. She’s never known how to comfort us or think about what is in our interest. She has always been so preoccupied with her own.

I know she can’t really help it. Her obliviousness to us and her singular focus on her fears and needs comes from her brain wiring. That’s just a harsh fact I have to accept.

She takes me down from the shelf in her mind when she needs me. Otherwise, I don’t hear from her. I’ll call at some point today. I’ll listen to whatever she is worried about and try to calm her fears. I know the limits of the relationship. But there’s still a deep part of me that can’t give up hoping for more.

Making us who we are

I know some people think my view of my mother is too harsh and unforgiving. I suppose I will always work on achieving a state of grace in my relationship with her.

But it isn’t just me who has noticed my mother’s unilateral engagement with her family. My son, who is a 20-year-old college junior, just sent me this email:

Hey mom,

So today Ryan came back from his evolution class and, as usual, had some awesome facts to discuss. He told me about what’s called “the grandmother theory” – that the elongated life of humans into one’s second generation of offspring is a genetic advantage because grandmothers can basically provide supplemental/additional mothering and teaching, which creates greater ability to expand the gene pool. It’s a pretty interesting idea you can read about here http://www.sci-news.com/othersciences/anthropology/article00678.html

The theory relies on grandmothers’ ability to stay alive long enough to mother their grandchildren, so I thought it was interesting to think about the psychological effects on people like me who have living grandmothers, yet don’t receive any additional mothering. To quote the article, “Grandmothering gave us the kind of upbringing that made us more dependent on each other socially and prone to engage each other’s attention.” And “grandmothering was the initial step toward making us who we are.”

I know she means no harm

My mother is pleasant when she is not stressed, and she can be sympathetic (as long as no action is required of her). But her lack of empathy, her absorption with her fears and anxiety, and her demands that we solve her most trivial problems – while she does little to nothing for us – were confusing and painful when we were young and draining now that we are adults.

Her children have come to realize that she just isn’t able to think of what’s best for others or what is too much to ask. She becomes anxious and irritable when she realizes that other people expect something of her or are annoyed by her demands. Other people are supposed to understand that her needs are always urgent.

I know what I am writing is harsh. I know she means no harm; she is just trying to feel safe. I know she cares about her children, but she didn’t know how to put her heart into nurturing us. Instead of empathizing with us, she has always used her energy and emotional stores to calm herself against the world. She had so little to give that we have always clung like boat-wreck survivors for just one sign that she would reach out and pull us to safety and warmth.

A Unique Awareness of Entropy

Solving my mother’s problems and calming her fears is only one aspect of being her child. We also are expected to want nothing from her, especially emotional support if it requires more than an expression of helpless sympathy. She feels compassion at times, but doesn’t connect this feeling to any action she might take on someone else’s behalf. She wants updates on a spouse’s or grandson’s condition if they have a medical problem – and she insists on acting as the hub of information to the rest of us, becoming annoyed if we have already been informed of things she wants to be the one to tell (in fact, she always seems surprised to hear that her children have relationships with each other, as if we live in suspended animation until she needs us and are tethered only to her). But she never offers to help. We know – we have always known – that we are on our own.

I wish I understood the workings of her brain better than I do. It occurs to me that perhaps the autism spectrum is about a constant and acute recognition of entropy, a threat state that the rest of us are wired to ignore. Perhaps people with this condition are emotional survivalists so hyper-aware of the relentless degeneration of the world that they react by excessively building bunkers against chaos and repairing what they understand to be the critical base order for their next breath.

Conducted under such intense pressure that the person is unable to economically borrow from conventional wisdom, or detect similarities in ambiguous information and generalize, or take conscious charge of their thought processes, this reactionary behavior consumes so much attention and energy and emotion that the person has no available capacity for understanding other people or balancing their own needs and those of anyone else. They are so occupied that there is no energy left for developing relationships or offering emotional reciprocity, which seem superfluous when it’s you against the crumbling world. How can you notice anyone outside this perpetual crisis of self?

Copyright 2015 Sarah Meyer Noel. All rights reserved.

Turning Back

My mother had a wonderful childhood, but her close relationship with her mother turned bitter once Mother was an adult. The cause of this change was that my grandmother disagreed with some of my mother’s choices, and my mother does not tolerate anything she views as criticism. I have never heard my mother say one good thing about her mother.

After my grandparents retired to Florida, Mother visited them only twice. The first time was for her beloved father’s memorial service. The second trip occurred a few years after he died, when she went down to attend her mother’s second wedding.

She did almost go while her father was still alive. He was hospitalized with irreparable heart problems and wouldn’t survive the year. Since he was dying, Mother, who was living in St Louis and not yet a widow, decided to have my brother Dan drive her to Florida. Dan, her chauffeur, was on spring break from community college. They took a camper that my father had bought to tow his race car and sleep in on race trips.

Dan drove the whole way; Mother lounged in the back of the camper and expected Dan to stop every hour and a half for snacks and bathroom visits. The camper was selected as the mode of transportation not just for my Mother’s riding comfort, but also because she expected Dan to sleep in it during the stay in Florida since my grandmother’s condo had only two bedrooms. Mother never considered sleeping in one of the two single beds in her mother’s room so Dan didn’t have to sleep in the camper. She never considered flying to Florida so Dan didn’t have to spend his vacation driving her.

After driving for ten hours, they arrived in Atlanta to spend the night at my paternal grandmother’s house. After dinner, Mother called her mother, and they had a bitter argument on the phone. I don’t know how the dispute started, but the breaking point was that our grandmother complained that Mother hadn’t visited until her father was dying and suggested that she was coming now only out of guilt. Whatever the specifics, my grandmother had clearly breached her daughter’s no-criticism-will-be-tolerated threshold.

My mother was so furious that she insisted on going back home immediately. Her shocked mother-in-law tried to talk her into reconsidering, but Mother was adamant. She did reluctantly agree to wait until morning so Dan could get some sleep. Attempts were made to change her mind again in the morning, but Mother wouldn’t consider this, so they left right after breakfast. Mother never acknowledged that she had Dan drive her ten hours each way for nothing. Although I have never heard her discuss this trip or mention regret about it, she never saw her father again.

Copyright 2014 Sarah Meyer Noel. All rights reserved.

A Universe of One

When my mother was a young child, she made up a rule to guide her consumption of ice cream, which was a favorite treat. Her ice cream rule was that on even-numbered days she could have ice cream only served on a cone; odd-numbered days were strictly ice-cream-in-a-dish days. One summer Saturday a family friend offered to buy her an ice cream cone at a stand in the park. Mother was heartsick at being forced to turn it down. It was an odd-numbered day. A dish day. And to my mother, one of her private rules must trump even the joy of a spontaneous ice cream cone.

Mother reluctantly let go of the ice cream rule soon after that day in the park; she had not anticipated that a rule meant to relieve the stress of choosing could ever cause self-sacrifice. This one failure did not cool her ardor for creating new commandments, however. She has always relied on an inviolate and broad-ranging charter of unique rules to manage the unpredictable world and diminish the pressures of problem-solving.

Although the ice cream rule was retired, my mother maintains a full catalog of unassailable food dictates, such as her statute for hard-boiling eggs. According to Mother Rules, eggs must be boiled for an hour to avoid the digestive peril of an undercooked egg. This degree of overcooking produces, well, a super firm (let’s call it “chewy”) egg white and a dry, perfectly intact yolk with a rich khaki-green coating.

Until we were old enough to read cookbooks and my sister Anne discovered that eggs shouldn’t be boiled for more than ten minutes, I believed that the green layer on the yolk was how hard-boiled eggs were naturally supposed to look.

When Anne informed Mother that she was boiling eggs at least six times longer than necessary, Mother refused to incorporate this information. No matter how often we reminded her of the printed facts, she was steadfastly hostile to all efforts to change her method or to look at the cookbook instructions on egg boiling. Instead, to protect herself and her rule from jeopardy, she ignored everyone else and continued to boil eggs for a solid hour.

Rules vs. Facts

Many of Mother’s rules revolve around managing her myriad fears and calming her abundant stress. Even when her children present evidence that a particular fear is completely baseless, she can’t let go of the fear or modify the related rule – because other people’s facts don’t dispel fear; only her carefully constructed rules have the power to fend off a threat. Our facts are just more noise.

The first time we present data that undercuts one of her rules, our mother laughs nervously and dismisses our comments. If we point out a second time the dissonance between any of her rules and reality, she is disconcerted and defensive. Should we heedlessly repeat the facts that undermine her rule a third time, she is likely to get angry. Rules cannot change without destabilizing her universe of one.

Eventually we learned not to try to change her rules or put too much emphasis on countervailing facts. And throughout our childhoods, in the interest of maintaining faith in her, we continuously lowered our assumptions of what we could expect from her.

Copyright 2014 Sarah Meyer Noel. All rights reserved.