Tag Archives: parent with Aspergers

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

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The Memory Vault

Like many people who have Aspergers Syndrome, my mother has a phenomenal memory. She remembers events and conversations and feelings and smells from an astonishingly early age. Though research indicates that most people don’t retain memories of the years before age five, my mother does. And her memories aren’t just vague images. She can roll the film and replay complete scenes, including what she was wearing, the weather, and often the exact date.

Her first memories are from when she was not yet two years old. She had an imaginary friend named Dorothy who existed in a mirror in the small house the family lived in until she was one and a half, when they moved to the large house where she spent the rest of her youth. She is sure about her age in the memory because of the house she was in; it had to be from before the move in 1932 to her grandparents’ house.

My mother’s interaction with imaginary Dorothy was limited to a single daily routine. She would stand in front of the hall mirror and tell Dorothy what color dress she was wearing that day. My mother remembers her mother smiling as she watched this daily ritual, and she remembers being pleased that her mother was amused. Make-believe Dorothy had no other role beyond receiving the day’s report on my mother’s dress color, and she did not move to the new house.

My mother wrote me an email with this account of her grandfather Henry’s last days in February, 1934, when she was 3¼ years old.

“My grandfather died on February 13. He had pneumonia and was sick only a few days. My mother said that she thought he had lost the will to live after the bank failure, which had cast a huge shadow on an otherwise pleasant life.

“[I remember that] a nurse was hired to come into the home to take care of him. What I see is that I am sitting at the breakfast table in the kitchen with my mother and grandmother on their feet in the room. The nurse comes in. She is a middle-aged woman, probably in her fifties, dark brown hair in a typical permanent fashion of the time, wears glasses, is wearing the traditional white uniform and cap. She has a very definite manner typical of nurses of that time, although in this instance she is not able to remember what her patient takes in his coffee. She must have been there several days at the time. After she left the room Grandma Amanda says, “Why can’t she ever remember that?”

“This sort of thing always amazed my mother when I would speak of it several years later, and it would be something that really had happened.”

My mother remembers a dream she had the night her brother was born when she was 6½. In her dream that night, my mother recalls that “I was in a courtyard of buildings that looked something like a picture that used to hang over the desk in the hall, a black and white etching. I was chasing a black and white cat around the courtyard. I had a wicker basket like Mother’s sewing basket and I wanted to catch the cat in it. I was having no luck when I woke up and heard Dad in the middle bedroom. The door between the bedrooms opened then and I went in. His first words were, ‘You have a little brother.’ I thought, ‘How interesting.’”

My mother can remember scenes from nearly every day of most of her early life, as though each has been filmed, indexed and stored for easy retrieval. This extraordinary ability is one of her few old-age interests. She is content to sit alone and replay her memory tapes. She’s delighted to narrate one if you ask.

“I’ve been told many times about my memory being unusually sharp, but to me it just seems ‘normal.’ I’ve always been accustomed to remembering a lot of what has happened in my life and am always surprised that many other people don’t remember such things! I don’t remember every day of my life, although when I was a teen-ager I thought that I could remember every day of my grade school years. It seemed to me that I remembered every day of kindergarten for a long time as it made such an impression on me as being a new way of life. Now I only remember parts of those days.

“I do remember Monday March 23, 1936 [she was 5 and in kindergarten]. It was one of those unusual balmy March spring days in Davenport after a particularly severe winter. I remember being out on the playground at recess and taking in the scene – everyone wearing lighter outdoor wear, balmy breezes.

“I don’t know how typical this is, but often I remember something that somebody said in my presence during my growing up years and it is so real to me that it is though they made the statement no longer ago than last week. Then I think to myself that it has to have been 60 or 70 years or even more since they said it.”

c 2015 Sarah Meyer Noel

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

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.

The Other Side of a Tuna Sandwich

One especially hot July morning in 1980, the day twelve people in St Louis died from the effects of a prolonged heat wave, my 49-year-old father took the day off from work. He was still recovering from a heart attack the summer before, which meant he had added some exercise to his self-prescribed regimen of heavy drinking. While it was still early in the day, before the worst of the heat settled in, he went for a long therapeutic walk and got caught in a fierce and sudden downpour. Instead of finding cover or shrugging off the pelt of giant raindrops, my father ran all the way home. He arrived at the carport just as my brother Dan, the only child still living at home, ran out to the driveway to jump in his car and take off for work. Exposed in the storm, they didn’t stop to speak.

After my father burst into the house, drenched and panting, he ran upstairs to change his clothes, leaving the dripping outfit hanging in the shower, marking his trail with wet footprints. My mother had stayed in bed because she hadn’t slept well the night before. When she got up around 11:00, she went down to make a tuna fish sandwich for lunch, noticing that the stairs were wet. She walked towards the den, where my father always sat alone when he was home, to see if he wanted a sandwich.

She knew as soon as she saw him that he was dead.

She called an ambulance and her minister, who was about to see my church-loathing father for the first time. Then the sudden widow went back to the kitchen to empty the can of tuna into a bowl and stir in the mayonnaise. She was sitting in the dining room eating her tuna fish sandwich when the minister arrived, several minutes before the ambulance.

When the minister came in and saw her interrupted lunch on the dining room table, she realized that he might think she was wrong to be eating at that moment, what with her widowhood so fresh and her dead husband frozen against the couch on the other side of the living room. But the minister reassured her that he saw nothing wrong about the sandwich. What a relief it was to her that he was so understanding.

I’m not quite as accepting as the minister said he was, though I try to be fair in analyzing the essence of this meal. Maybe the tuna sandwich doesn’t show anything about her heart, and maybe it is wrong to question it. I struggle with how to interpret the sandwich, even now that I understand that Aspergers interferes with her feelings about other people. I brushed it off at the time she told me about the sandwich, back when I still insisted to myself that she was a typical mother. But now that I am more honest with myself about her emotional boundaries, it’s harder for me to believe that eating the sandwich is nothing more than any other way to wrestle with the horror until help arrives in a devastating crisis.

Is it too harsh to think that eating that sandwich is another sign of her shallow emotions about other people? Maybe she needed that serving of normal, of continuity and comfort to help her manage the shock of a suddenly dead husband and the specter of a startling new life. Don’t we all react in unexpected ways when we face such a shock? I want to believe in her. I still want to believe that there is a deep well of feeling for others, though she has shown over and over that there is not. But still, maybe that tuna fish sandwich doesn’t mean much. Maybe it was not a show of hand.

Copyright 2014 Sarah Meyer Noel. All rights reserved.