Tag Archives: growing up 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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What My Mother Taught Her Daughters about Sisterhood and Family

My sister Anne and I were not close growing up. Anne was the oldest. I was a duplicate. She and I were jealous of each other. There was so little parental engagement, and we four kids were like hawks, always hunting for a scrap to eat and squawking if another bird got it.

From my perspective, Anne got all the attention from Mother, and I had to work to find ways to gain Mother’s notice, to feel the warmth I longed for and was sure emanated from her if I could just figure out how to turn it my way. Like most kids, we projected our expectations onto an image of our mother. Neither of us had any idea that Mother’s miniature supply of devotion and nurturing was not the same as most other mothers are filled with. Anne’s view was that I was elbowing her aside, a crafty thief acting with a competitive motive of getting attention away from her, and she resented it.

Our mother had only enough nurture and protection for one, herself, and there were four of us kids.

By high school, Anne and I were very different and had no friends in common. She was quiet and an excellent student and never any trouble to our parents. On the other hand, I found a substitute family in a group of kids who were from families as broken as my own. We were outliers, the high school hippies.

As a teenager, I was home as little as possible, and my parents didn’t seem to care or wonder where I was. I generally stayed out all weekend, and no one said a word. Looking back, I’m a little surprised I lived through it. I put myself into dangerous situations and sometimes didn’t care what happened to me. I was needy and lost; I latched onto one sad boyfriend after another, but no amount of love or obsession could fill the hole in my heart.

I took long walks. I wrote poetry. I listened to music and spent long periods of time alone trying to figure out what was wrong with me. I thought I was building a self when I was at least as much self-destructing. My parents had little comment beyond one conversation in which my father told me he could trust Anne to take care of herself but he didn’t have any faith in me. I was trouble, and their hands-off, not-my-problem strategy for dealing with troublesome kids was the same one they used for compliant ones.

When Anne left for college, I hardly noticed. She came home as infrequently as possible. I don’t think I ever wrote to or received a letter from her. We were both undernourished and ill-confident and self-absorbed, and we had never been shown that family mattered.

After I moved to Texas when I was 18, Anne and I never even temporarily lived in the same town again. We didn’t talk often and didn’t see each other more than once every year or two until Mother moved to Atlanta when we were both in our thirties. We were pleasant to each other, but that was all.

Our relationship changed only when Anne let go of her hopeful assumptions about our mother and began to realize that she did not fall within the range of normal, loving mothers like Anne had always assumed she was. Anne began to recognize that she had misplaced the responsibility when she blamed me for trying so hard to get Mother’s attention. Anne and I started talking more often and having more substantial discussions.

I learned a lot from Anne in these conversations. Her two sons are about eight years older than my two, and when we started talking, her sons were young teenagers. One of Anne’s revelations was that she couldn’t understand why Mother had virtually abdicated her role when we were young teenagers. At the time we didn’t have a way to know better about how good parents operate. But now that Anne had teenagers, she couldn’t reconcile Mother’s past apathy and inaction towards the four of us with her own continued involvement in her children’s lives.

As Anne realized, teenagers still need lots of support and guidance and oversight. They aren’t fully formed. They’re all insecure and uncertain. They can’t raise themselves.  They need parental involvement. Why, Anne wanted to know, did Mother not instinctively want to function as a loving and protective mother? Why wasn’t she wired to nurture and to view us as lovable charges who needed her guidance and interference and understanding, even when our ages reached double digits, even if protecting us was stressful or demanded some self-sacrifice? As Anne and I talked, we had to admit that she was not that much more involved when we were younger.

Anne and I are close now. We talk often, though all too frequently it is about our frustration with Mother’s oblivious self-absorption: her latest unreasonable demand or fear or another instance of her expecting us to act as her problem-solving marionettes or the most recent example of her lack of interest and love for her family. Our closeness, our sisterhood, was late coming, but I am grateful to have that relationship now.

Anne has pointed out that our parents never showed us that family was important. She thinks it’s not a coincidence that the four of us kids have ended up in distant cities, many hundreds of miles from each other. One year at the beach when my older son was seven, Anne took him along to a minor league baseball game with her family. I stayed back at the house with my younger son, but I really appreciate that she wanted to bring my son along with hers. We haven’t had much opportunity to blend our families, and she has taken the lead on this. She has thought of ways to create the family we never had growing up. In fact, the family beach trip was her idea, and she took on the annual challenge of wrestling with Mother to persuade her to continue to fund it.

I am not suggesting that my mother wanted to keep her children apart. In fact, she believed we would be the close companions she’d read siblings would be. But she had no sense that her actions might play a role in our relationships or in the development of our sense of self. She just could not grasp that kids need attention and understanding and that motherhood includes self-sacrifice that the mother does not resent giving. Trapped in the black hole of her stresses and needs and fears, she had no way of knowing that it’s hard for kids to be close when they are perpetually hungry for maternal love and attention and protection.

It’s not her fault that she is oblivious to even her children’s needs. She has no foundation for empathy; she just isn’t built to support it. I know that, though it is so hard to face.

Copyright 2016. All rights reserved.

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

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.