The Grief of a Special Needs Parent
It was early, the sun yet to peak over the horizon. The air was cool and crisp and there was the light aroma of the leaves that scattered the ground. I was working my way through our school day routine on autopilot. Wake Finley, lift her out of bed, change her, dress her, brush her teeth, fix her hair, put on her glasses, put on her shoes, lift her into her wheelchair, feed her breakfast, wheel her out the door and get her on the bus. But somewhere between lifting Finley out of bed and getting her dressed, my five-year-old daughter had a thought that she proudly shared with me. “Mommy, when Finley doesn’t have the Pitt Hopkins anymore, she will be able to talk and walk and play with us.” I could feel the air escaping my lungs. I gasped to will the oxygen back into my body, but it fled again. I could not breathe. I was crushed beneath the weight of these words spoken so sweetly from innocent lips.
“Honey, Finley will always have Pitt Hopkins.”
The smile that was painted across her round, little face faded. “She won’t ever be a grown up? Or have kids?”
“Oh God, please make this stop!” played over and over in my head. I offered her a quick “No sweetie. She will get bigger but Mommy and Daddy will always have to take care of her.” I abruptly fled to barricade myself in the bathroom, tears streaming down my cheeks. My breath was rapid, my forehead began to sweat, and my heart tried to burst from my chest. At that moment, I was experiencing one of the most intense STUG moments I had ever felt.
Grief has a pattern of ebb and flow that is often compared to waves. One moment you are floating in calm seas, unaware that a giant set looms in the distance until suddenly, you are pummeled with a massive wave of emotion that leaves you tumbling beneath the surface, suffocating, unable to feel your way to the top. A sudden temporary upsurge of grief, or STUG, is a term that was coined in the 1990s by Dr. Therese Rando, a grief counselor and psychotherapist. Laura Silverman, the owner of Sweetgrass Integrative Counseling and Therapy, states “A STUG is essentially an overwhelming and almost incapacitating feeling of grief that comes out of nowhere.” (Tatro).
Grieving a child that has not passed is hard for many to understand. How can you grieve someone that you have not lost? There is so much that is lost on this journey though. Special needs parents lose normalcy, spontaneity, time, relationships, and peace to name a few. Pitt Hopkins Syndrome stole my child’s words, her ability to ever be independent, to get married, to have children. It robbed us of being empty nesters in the future. Our lives will always be consumed with caretaking. We do not graduate from one milestone to the next. Each day can throw a new challenge at you. It is a hard life.
The day we received Finley’s diagnosis was a day like any other. I had gotten the girls up and dressed for the day. My oldest daughter was 3 at the time and she happily played with her toys in her room most of the day. It was a gloomy day in March and there was a light mist brushing against the trees. I had just laid Finley down for her afternoon nap when the phone rang. The screen flashed a number I did not recognize. I answered with trepidation knowing that I was awaiting a call that had the potential to answer the question that had been nagging my subconscious since the day Finley was born. There was a genetic counselor on the other end. “We found something on Finley’s genetic panel. She has a deletion on her 18th chromosome, specifically the TCF4 gene. This finding is consistent with Pitt Hopkins Syndrome.” The words flowed so smoothly out of her mouth that they sounded rehearsed. She continued with her prognosis unemotionally. She callously made statements like, “She may never walk.” and “She likely will never develop speech.,” as if those phrases did not rip my heart from my chest. Finley was only 9 months old, and I had not even begun to look for her first words, but now I knew that I may never hear them.
I hung up with the counselor and staggered, carrying the weight of her diagnosis on my shoulders, to the staircase where I crumbled into the carpet. There I lay sobbing heavy, painful cries. I could not keep the moans from escaping my lips. My entire world had just collapsed, and it lay in the rubble that was our life before. “Why is this happening?” played in my mind like a record skipping time after time. When tragedy strikes, we often measure our lives in before (insert horrible event here) and after (said event). Our lives were now before Finley’s diagnosis and after her diagnosis. Unfortunately, in the years since her diagnosis we have experienced more tragic events that we measure time by as well. This adds to the complexity of grief.
According to Psychology Today “For some people, grief is a short-term phenomenon, also known as acute grief, although the pain may return unexpectedly at a later time. But other individuals may experience prolonged grief, also known as complicated grief, lasting months or years. Without help and support, such grief can lead to isolation and chronic loneliness.” (“Grief”). Prolonged grief is not an uncommon phenomenon amongst special needs parents, with many experiencing years of grieving. What makes this type of grief unique is the many hurdles parents face throughout their children’s lives which can bring on new waves of emotion. Subsequent diagnoses, education struggles, financial strain, and the constant battle for services and fair treatment for their children can leave caregivers exhausted, physically drained and lead to problems with mental health.
I would love to describe the moment I saw Finley as magical, the way it had felt with my first child. Yet, when I first saw that tiny little person before me, I felt a pain in my chest. Instinctually I knew something was not right. “She doesn’t look like a typical baby.,” I told my husband just hours after delivery. I could not shake the feeling that our lives with Finley would not be what we had planned. That feeling gnawed at me day in and day out. Finally, when she was 4 months old, I started to express my worry to loved ones, only to be dismissed. I started to seek answers from doctors, only to be met with the same brush off. By the time Finley reached eight months old, there was rarely a day that I was not reduced to tears. I felt as if I was pounding on glass, begging for someone to hear me, but I was invisible to the world around me. I began to lash out at family and friends. I found it hard to roll out of bed each day. With Finley’s diagnosis came vindication, but the sadness did not stop there. I could feel myself sinking further and further into depression but felt powerless to stop it.
Major life changes often bring with them uncomfortable growing pains. It is not unusual to have feelings of guilt, inadequacy, anger, resentment, and sadness. Studies show elevated depression rates amongst parents of children with developmental disabilities. “Some developmental diagnoses are considered life-long chronic conditions that may require ongoing parental support beyond the age that other children reach independence. Children with developmental disabilities may also have one or more significant medical problems that require intensive and ongoing care.” (Wallis). Parents of children with special needs children often report many symptoms that indicate situational depression. Situational depression is described as a reaction to prolonged stress or major life events. The depression usually subsides when you have adjusted to the event (Moore). The ever-changing struggles associated with special needs parenting can trigger new bouts of depression in those that are susceptible.
The chronic stress associated with parenting a child with unique needs takes an overwhelming physical toll on the body. One study showed that the cortisol profile in mothers of children with autism spectrum disorder was similar to those that experienced severe levels of chronic stress, such as those suffering from Post-Traumatic Stress Disorder (Seltzer et al. 10). Many special needs parents also experience significant sleep loss due to chronic stress in addition to their children’s sleep disturbances. Sleep is an essential part of maintaining physical and mental health. According to Ian Sample in the article “Sleep Helps to Repair Damaged DNA in Neurons, Scientists Find,” Scientists have discovered that broken down DNA builds up in brain cells during the daytime and is only repaired during sleep. Chronic stress and prolonged grief lead to other negative health effects such as heart problems, lowered immunity, body aches, digestive issues, and sleep problems (When Loss Hurts).
Many special needs parents report strained interpersonal relationships. Friendships, marriages, and relationships with other children suffer when an individual requires an elevated level of care. Parents often experience social isolation due to their child’s high emotional and/or medical needs. Play groups are essentially nonexistent for the special needs mother. The uncomfortable nature of a special needs parent’s reality drives away many friends who do not have the emotional wherewithal to handle a friendship that requires this level of depth.
There is debate about the divorce rate amongst special needs parents. From the moment we received Finley’s diagnosis we heard the dreaded statistic of 80 percent of marriages will end in divorce if the parents have a child with an autism spectrum disorder. While this number seems to be exaggerated, some studies show a higher divorce incidence in special needs parents. One study showed a divorce rate of 23.5% of parents of children with ASD as compared to the 13.8% of marriages that ended in divorce in the control group. The divorce rate remained high into early adulthood in parents of children with ASD whereas it decreased after early childhood (around age 8) in the control group (Hartley et al.). Many parents of special needs children do not move out of the extensive caretaking phase, maybe ever. This puts undue stress on marriages.
One sizzling summer day in July we watched as several of our neighbors piled into their cars to chase a thrill at the local theme park. The air was sweltering, the sun felt as if it was sitting on top of the tree line and beads of sweat collected on our brows. My oldest daughter, Presley, inevitably asked the question I knew was on the horizon, “Can we go too?”. But she already knew the answer. She always knew the answer.
“We can’t honey. It is too hot for Finley, and she is not in a good mood.”
I am no stranger to the look of disappointment on my children’s faces. Their lives differ so greatly from their friends. I spend many nights with tears plastered to the back of my eyelids, worrying about how they will remember their childhoods. I think about how they will remember their parents, who were often too exhausted or too afraid to attempt those family activities other families, “normal” families, enjoyed. I look at those families with such envy. I dream about being one of those families. I imagine our lives to be “footloose and fancy free” on the other side of fate. The envy triggers another wave of grief.
My journey these last eight years, and my consistent struggle with grief, has taught me some important lessons about the importance of preserving my mental health. It is important to learn healthy coping skills when you are gifted a child with unique needs. Doctor Monique Tello says the article titled “Self-care: 4 Ways to Nourish body and Soul” about the self-care, “It’s so, so important. But, it’s also one of the first things to fall by the wayside in times of stress, especially for those who are primary caregivers. This includes parents, people caring for elderly relatives, healthcare providers, and first responders. These are the people who often put the well-being of others above themselves.” Self-care is paramount to maintain physical and mental health. Exercise, meditation, healthy eating, spending time in nature, therapy, taking up hobbies and time with friends are some of the ways I nourish my health. It has been incredibly important for me to learn that sacrificing for my children cannot mean that I neglect myself. Self-care allows me to be more adaptable to a world that never stops turning.
Special needs parenting is not without its gifts. We have found an entirely new family that we would never have been connected to if we were not on this path. We have discovered beauty in small miracles. Our children are growing up with a new perspective on compassion and differentness. We have learned to appreciate the uniqueness of humanity. We have seen some of the most beautiful gestures from family and friends. We have been humbled beyond measure and know not to take our lives for granted. We are blessed to see limitless strength in such a tiny person. We know unconditional love.
With each new milestone and each new challenge, I know I will be facing new forms of grief. When graduation comes, when my friends become empty nesters, when weddings are planned and grandchildren are born, there will be pain. Those waves of grief will always loom in the distance, but they will recede again as they always do. Each time I tumble beneath the surface I learn how better to make my way to the top. And with each set, I will become a stronger swimmer.
Works Cited
Hartley, Sigan L., et al. “The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder.” Journal of Family Psychology, vol. 24, no. 4, 2010, pp. 449–57. Crossref, doi:10.1037/a0019847.
Moore, Marissa. “What Is Situational Depression?” Psych Central, 28 July 2021, psychcentral.com/depression/situational-depression. Accessed 23 Sept. 2021.
Psychology Today. “Grief.” Psychology Today, www.psychologytoday.com/us/basics/grief. Accessed 22 Sept. 2021.
Sample, Ian. “Sleep Helps to Repair Damaged DNA in Neurons, Scientists Find.” The Guardian, 5 Mar. 2019, www.theguardian.com/science/2019/mar/05/sleep-helps-to-repair-damaged-dna-in-neurons-scientists-find. Accessed 23 Sept. 2021.
Seltzer, Marsha Mailick, et al. “Maternal Cortisol Levels and Behavior Problems in Adolescents and Adults with ASD.” Journal of Autism and Developmental Disorders, vol. 40, no. 4, 2009, pp. 457–69. Crossref, doi:10.1007/s10803-009-0887-0.
Staff, By GoodTherapy. “When Loss Hurts: 6 Physical Effects of Grief.” GoodTherapy.Org Therapy Blog, 20 May 2018, www.goodtherapy.org/blog/when-loss-hurts-6-physical-effects-of-grief-0520187. Accessed 22 Sept. 2021.
Tatro, Carrie. “STUG: When Grief Hits Like a Bolt Out of the Blue.” HowStuffWorks, 28 Aug. 2020, health.howstuffworks.com/mental-health/coping/stug.htm. Accessed 22 Sept. 2021.
Tello, Monique, MD. “Self-Care: 4 Ways to Nourish Body and Soul.” Harvard Health, 16 Nov. 2017, www.health.harvard.edu/blog/self-care-4-ways-nourish-body-soul-2017111612736. Accessed 29 Sept. 2021
Wallis, Kate, and Stefanie Zavodny Jackson. “Depression in Parents of Children With Developmental Disabilities:” Children’s Hospital of Philadelphia, 15 Nov. 2018, policylab.chop.edu/blog/depression-parents-children-developmental-disabilities-what-do-we-know-and-what-can-we-do. Accessed 23 Sept. 2021.
