My Life Is Not a Lament

My Life Is Not a Lament

Kyra Chambers reacts to "the *autism grief* culture inherent in parenting groups."

Grief is normal.
You need to feel sad that you did not get “normal.” 
It’s okay to wish that they were different, that your child was someone else.

I have read these words in posts over and over in forums for parents of autistic children. Every time I do, my heart breaks a little bit more for all the children they are referring to. I am an autistic parent, diagnosed a day after my thirty-fourth birthday. I started to suspect that I may be autistic after I had my youngest son. From a very young age he showed a lot of sensory seeking behavior; after reading about sensory processing disorder and going down a wormhole into the wonderful world of neurodiversity, I found the autistic behaviors described in the articles and books described me completely. I had no idea until then.

I have not had a remarkable life.

I have lived many moments experienced by all humans, divergent and not . First love, heartbreak, marriage, children—all elements of what is considered a “normal” life, right? Many of you reading may be married, parents, family members, or perhaps just a person who reads these words and can see a life that has been lived with every nuance of emotion. Maybe you love the night, or dancing, or you were bullied at school for being different. There is nothing remarkable here. 

I have not had a quiet life. 

There were times of great joy, times of heart wrenching sorrow, days that seemed never ending, days that were a mere sigh but I wish had lasted a lifetime. The day I cried in the playground because I was called weird; the days I now embrace that I am unique, a multi-faceted glorious whirlwind of specialized knowledge; the days of dancing in my kitchen, singing, drinking in the wonders of clear moonlit nights when I am at my most free and I look at the stars and see immortality; the days as a child I ran free as a bird, loved and accepted by my family; and the days I have to hide in my bedroom for an hour because the overstimulation of two loud children, and televisions, and all the other noise that crests inside my head washes over the ability to cope physically and mentally; the wonderful day my fierce and passionate daughter was born; the day I married my husband, who is always forgiving of a wife who constantly loses things and cannot ever be on time; the day my youngest son was born, my shiny sun in nature as well as in name. 

This is not a life of grief. 

Like some of you reading this, I have experienced loss. The death of a grandparent, a great-grandparent, a friend, a work colleague. My first son—a child who now talks to me in the whisper of the wind and the drumming of the rain as I type this. An unexpected loss, we shared only thirty-two hours before it was time to let go. Years of love and memories to be made, stolen from us by chance. Eleven years, a lifetime and a single heartbeat in one. There is a part of me that forever will be missing holding the hand of a blonde boy with sapphire eyes and his mother’s nose. That pretty picture still does not change the depths of grief the soul plummets through when you make the decision to turn off the life support keeping your child in a semblance of life. To weigh the scales between what is futile hope and what is reality, what is selfish and what is right. Of living with survivor’s guilt, to think you killed your child. 

I look at my rainbow children and find joy, happiness, but also a taste of bittersweet regret as I watch a quiet miracle unfold; they play a game together and I look 6 inches above at the picture of my forever young son. A part of our family he will always be, but my days have always been a shade darker since the day I said goodbye. His was a life unfulfilled. To never feel a mother’s cuddle, a lover’s kiss, or to watch their grandchildren grow before them. Not even a first birthday. Is this not tragedy?

After this, how can I not be pained when I read the words of parents who say they grieve the living, breathing existence of their children because they did not sign up for a disabled child? A child who is selectively mute and needs to use written communication. A child who struggles to contain their joy and who spins and shouts “too loudly,” or one who needs solitude and hides in their room away from all family and too much stimulation. A child who cries at the party they did not want, who is called selfish because they will not share a treasured best soft toy friend, who is struck into the cast of “that naughty kid.” For all their challenges, my children—and all the ones I read about in those forums—get to experience things my deceased child never will. The wind, the sun. Things he never knew or saw.

Accept your children for the people they are. They have a lifetime to learn and love and you are one of the biggest influences in their lives. Fill their days with love and acceptance, with understanding and compassion. Listen to their voices and seek out other autistic people and truly listen. Listen to our songs of embracing ourselves, of positivity and encouraging the autistic self. We do not sing a dirge of intensive therapies to teach compliance and masking of the soul, that itself is a little death, hidden under quiet hands. Come and listen to our songs of support, of joy and color, with a depth of emotion and understanding that is in every single way just as nuanced and capable as every person reading these words.

Save your grief and lamentation for the dead. For a life taken before due time, something lost and never regained. Life is joyous. A small hope or moment of light can be found even in the darkest of days. Celebrate your children’s lives while they are with you. Do not waste time with shame and regret when they are right there. Trust me when I say every moment is a gift.

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2 min read
To Be A Healthy Confident Mother by Marisa Smith DiBernardo

To Be A Healthy Confident Mother by Marisa Smith DiBernardo

Marisa Smith DiBernardo describes the layers of resistance she faced trying to be heard by the medical community.

At the end of a seven year romantic relationship, I found myself—at the age of thirty-five—desperately wanting a child. With the help of match.com I set out on a mission to find a life partner. I spent three years trolling the dregs of humanity before I met the man I thought would be my happily ever after. When we were dating, our relationship was amazing, and after four years we decided to take the plunge. Almost immediately after he popped the question, I became pregnant. I was happy and healthy, but because of extreme weight gain—180 pounds at my daughters birth—I found it extremely difficult to move around comfortably. I was also having almost continual morning sickness, but I kept working.

My husband, still my fiancé at the time, was studying to become a nurse through an accelerated nursing course. I had my daughter in May of 2015, and I was put on bedrest after an emergency c-section. During this time, I felt happiness and excitement to start this new journey but I felt an extreme tiredness and I never got enough sleep. As the months continued, I still felt exhausted and explained this to my doctors and family. They all told me that it was because I had major surgery. Unfortunately, the exhaustion never went away.

Now, I should tell you: I am a woman who has Traumatic Brain Injury (TBI) from a very serious car accident that happened over 30 years ago. At first I wondered if the extreme feelings could be related to the TBI. Nevertheless, this was different from anything I had experienced in nearly twenty years prior.

So I decided to talk to my mother about my extreme exhaustion and sadness. After the accident, my mother became my legal guardian once again. Even after a long recovery with most of my mental faculties having returned, her role as guardian continued with financial and medical decisions. My mother believed that my pain was normal, having just had a baby, and she related it to the TBI. I tried to explain to her that I had lived with TBI for years, but this sorrow and exhaustion was completely new. I didn’t really understand postpartum depression or anything about childbirth, and my mother had no experience with it either because she had never had a child: I was adopted. As a society we disregard the perspectives of the vulnerable, so it was easy for my mother and I to assume it was just a result of the accident.

Nevertheless, my depression was becoming worse. As my daughter began to age, my husband and I began to grow apart. He was either working, or hanging out more and more with his nursing student friends. I was emotionally and physically drained, but I didn’t have the vocabulary to describe what was going on. One day I decided to look up my symptoms online and I came to the conclusion that this terrifying experience was in fact postpartum depression. I mentioned this to my primary care physician, but he said I should be patient, the symptoms were strictly related to my TBI. So I met with my neurologist, and he reaffirmed that my extreme exhaustion was undeniably because of my TBI. I told him I had done research, and that I thought it was Postpartum Depression, but he diminished my thoughts and concerns. Even my husband who had accompanied me to my appointment and promised to back me up, got intimidated by the neurologist. He was so impressed by the fancy diplomas that he didn’t support me. I was not diagnosed or treated and my condition continued to worsen.

I tried to be the best mother I could. I would take my daughter to all the play group—the Lebanon library, the Women's Health Resource Center, the Hanover library, and even play dates at my house. Nevertheless, my daughter grew so completely attached to me that each day was just intense. She would scream and cry if I left her side for any amount of time. At times, I would go to the gym and put her in daycare for an hour’s worth of peace. I would sit in the adjoining room, still on “bed rest” so I couldn’t workout or lift anything heavier than my baby. I would read magazines or the newspaper and quietly sip coffee.

Organization and time management became even harder than it had been in the past. I had worked hard to master organizational skills while attending college, and the University Extension of UNH and outpatient services at DHMC rehabilitation, but after my child’s birth I was simply exhausted. I was a terrible wife because I could not support my husband—working full time as a nurse at this point—with the housework and cooking. I could see and feel him crack under the pressure. My mother and his mother would both speak to me at different times, but by this point I just didn’t have the vocabulary to explain what I was dealing with.

We began to argue a lot. I tried to say that I was sorry, and we were just tired from the baby. At first, my husband agreed with me—but after a while that stopped. He regularly told me that he didn’t love me the same anymore. I pleaded that a woman’s drive could be diminished after childbirth, and it was met with resistance. This became a very dark time.

And then it all came to a head. We agreed to have a quiet discussion, but that did not happen. Our discussion turned into an argument, and it grew louder and louder as we both escalated. I remember the very moment: he screamed at me and slammed the bedroom door, and something in me just clicked. I had had enough. I threw him out of the house, and I checked myself into Dartmouth-Hitchcock Medical Center for emergency psychiatric services. It seemed this was the only way I was ever going to get medical treatment. After this, my doctors, husband, and mother finally heard me. After a brief stay with emergency psychiatric services, we finally came to the conclusion that I had premenstrual dysphoric disorder, or PMDD.

It was still extremely difficult for my doctors to decide how to treat my condition. My neuropsychiatrist discovered I had been on the maximum dosage of my antidepressant for too long and my body was no longer responding to it. I was put on a different one and at a lower dosage. My conventional doctors wanted to put me on a more serious regimen of antidepressants that would leave me numb, and this scared me. I worried how I would be able to take care of my daughter. I turned to a Naturopath for help, and she quickly diagnosed me and made suggestions about how to treat it. I wanted the fastest relief because at that time I was desperate to save my marriage. Even with my hospital stay, and all the doctors agreeing on what was wrong with me, my husband still did not accept it. Finally, I was referred to Planned Parenthood and placed on the Nuva ring, a form of birth control to regulate my hormones. They had been completely out of control since the birth of my daughter.

The nurse practitioner and I discussed the different forms of birth control that would best work with my memory loss and other symptoms of TBI. I also began to receive regular psychiatric treatment at DHMC. The combination of a different antidepressant, Nuva ring, and regular psychiatric help has saved my life.

Once my hormones stabilized, it only took a short while to realize that I wanted to separate and stay separated from my husband. My doctors began to take my health concerns seriously. At times, I wonder if I had been diagnosed earlier, would things have changed in my marriage? Who knows? I don’t. Nevertheless, I am very happy because now I am able to be a healthy confident mother.

https://www.plannedparenthood.org/health-center/vermont/white-river-junction/05001/white-river-junction-health-center-2745-91770

https://www.hopkinsmedicine.org/health/conditions-and-diseases/premenstrual-dysphoric-disorder-pmdd

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3 min read