Dealing with Chronic Sorrow and the Loss of a "Fluent Child" (A Personal Story)
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About the presenter: Scott Palasik, PhD, CCC-SLP, is an Assistant Professor and director of the Mindfulness Behaviors and Social Cognition Stuttering Lab (MASS) at the University of Southern Mississippi. He graduated from Bowling Green State University with his PhD (specializing in Fluency disorders) and completed both his BS and MS from Syracuse University in Communication Disorders. In between his MS and PhD, Scott spent seven years around Chicago as a Speech-Language Pathologist services children and adults in schools and nursing facilities. |
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About the presenter: Jaime Hannan, MS, CFY-SLP is a Speech-Language Pathologist at Cincinnati Children's Hospital in Cincinnati, Ohio. She works with children ages birth to twenty-one with a wide variety of communication disorders. Before beginning her job, Jaime attended Bowling Green State University where she received both a Bachelor of Science degree and a Master of Science degree in Communication Disorders. Jaime's interests include fluency disorders and literacy and she is working toward earning specializations in both areas. |
Dealing with Chronic Sorrow and the Loss of a "Fluent Child" (a personal story)
by Scott Palasik and Jaime Hannan
from Mississippi and Ohio, USA
All of my life, I (Scott) have spent countless hours wondering what people think about my stuttering and why people act the way they do toward people who stutter (e.g., finishing sentences, looking away, walking away). This bewilderment began with my parents from an early age and eventually led me to develop an appreciation and sense of respect for what some parents will say and do when they feel that their child is going through pain-filled moments (as we all do on this journey known as life). Additionally, it made me wonder to what extremes parents will go to protect their children who stutter from those moments of suffering.
Growing up as a person who stutters, my parents and I never talked about stuttering with the exception of them telling me to "stop, slow down, and think about what I was saying." Classic advice, which then turned into "Scott, stop!" by the time I was eighteen years old. Shortly after I started college, I began to see a speech pathologist who (for the first time in my life) allowed me to talk about my stuttering, openly, while she just listened (and boy, did she listen!). Eventually, she advised me to talk with my family about my speech. So after a year of therapy, I gathered my mother, father, and older brother at a restaurant and told them that telling me to "stop, slow down, and think about my words" was not helpful. I then said, "I don't blame any of you for my stuttering and I would appreciate it if you did not say those things anymore." This obviously took me a long time to say, as I was nervous and scared of their reactions; however, because of my therapist, I found the courage (for the first time) to tell them what I needed to say. My mother cried (she is very emotional, like myself) and my father and brother just listened. No one said anything and I left that conversation wondering what the three most influential people in my life thought. We did not talk about stuttering again until years later on Christmas Day, when I witnessed the power of guilt and realized the depth of a parent's love for their child as well as their need to protect their child from pain and suffering - at the expense of choosing suffering for themselves.
I had a favorite Teddy Bear (Teddy) growing up that I got when I was born. I took it everywhere when I was a little boy (and I mean everywhere, including the bathtub!). One day when I was about five or six, my favorite friend disappeared and I never saw him again. Three or four years ago (on a snowy Christmas morning in upstate New York, when I was in my early thirties) I opened up a package from my mom. Inside the red tissue paper was my Teddy Bear. I turned to my mother with delight, surprise, and genuine joy in my heart and said "Wow! I haven't seen him in almost thirty years. Where did you find him?" At that moment my mom broke down into tears and said, "I took him away when you were five." She paused and sniffed away a tear or two before going on, "I think that is why you started to stutter." She began to sob. I went over to her and gave her a hug, which appeared to open the floodgates of tears. In our embrace (shedding tears of my own), I said, "Have you been carrying that burden around with you all this time?" She nodded. In between tears and sniffles, she explained that she always blamed herself for my stuttering and it pained her to watch me struggle. She added that she yearned to help in any way that she could, but felt that she had no answers for my stuttering. Perhaps the truth is that it is easier for parents to harness the blame for their child's speech difficulties than to just stand by and watch. Guilt may give parents something to hang on to.
We stopped opening gifts while my mother, father, and I began to talk about stuttering (by this time I was a seasoned SLP about to start my PhD with a focus in Stuttering). I first assured them that their motivation to help me and protect me was heartfelt. I told them "I know you love me. I know that you were as confused and scared - I was too." We talked about stuttering for awhile more that morning. I told them that stuttering has no concrete cause, but that some researchers tend to think that it has a genetic component to it. To this my father nodded, as he had stuttered since he was a boy. I went on to explain that other researchers believe that children who stutter possess different temperaments than children who don't stutter. I assured them that it was not their fault and that they did not cause my stuttering. At that moment, a small smile spread across my mother's face (while tears still rolled down her red swollen cheeks). I further explain how some days I get frustrated and other days I just live with stuttering as a piece of me. I added that stuttering has not prevented me from living my life - it actually helped me become an accomplished musician along with becoming a Speech-Language Pathologist in order to help children and adults cope with communication disorders. I ended my monologue by saying that, "If I didn't stutter, I don't think I would be as compassionate and caring of a person as I am today. I owe my life and career to stuttering." My father (being a man of few words) nodded and smiled (to which I sensed he'd been longing to talk with me about stuttering for some time). My mom gave me a hug and said she loved me and that she was sorry if anything she or my dad did ever hurt me. She added, "We just didn't know what to do and only wanted to protect you. It broke our hearts to see you struggle, it just broke our hearts." I told her that over time I had come to realize that "it is the struggles in our lives that make us strong." She smiled, cried some more, and then we went on with our Christmas.
I suppose at the end of the day we never know what the motivations are for anyone, even our parents. As children we may never see our parents as adults, so when we do grow up and finally get to meet our parents as adults, hopefully we can see how much they have sacrificed (emotionally and physically) for us as children. Where the rubber meets the road, I think most parents just want to protect their children from any pain or discomfort. When they cannot do this, feelings of guilt and sadness (very similar to the grief cycle) may start to crowd their minds, which can cause them to act in ways they may not have otherwise. These feelings of guilt and sadness may stem from a parent's perceptions that they did something wrong to cause stuttering or they could be part of the grieving process that is associated with chronic sorrow (Olshansky, 1962).
The term chronic sorrow began with Olshansky, who was a therapist counseling parents of mentally-challenged children. Olshansky wrote the following to explain his hypotheses about what keeps parents in this constant state of sadness, anger, and guilt, and may contribute to their difficulty accepting the disability that their child possesses:
Eakes, Burke, and Hainsworth (1998) further discussed chronic sorrow with parents of disabled children and their research suggests that "the confrontation with disparity between the idealized and the actual" (p. 182) may be the source of the parents sorrow. The authors go on to suggest that events that continue to show parents that their children are different may perpetuate chronic sorrow and keep parents from accepting their child's challenges.
Many studies related to chronic sorrow have been performed over the past four years. One recent study by Bowess, Lowes, Warner, and Gregory (2009) investigated parents' perceptions of their children with Type 1 diabetes. This study found that parents possess thoughts related to grieving and that there are specific triggers for parents to possess feeling of grief. These findings appear consistent with Eakes et al.
The above mentioned theory of chronic sorrow may directly apply to parents of children who stutter and the parents' feelings of guilt, as well as their motivations toward their children. Parents may experience a conflict between their "imagined" ideally fluent child and their "actual" child, who stutters. This conflict may trigger sorrow and guilt along with feelings of inadequacy because they are unable to fix their child's stuttering and protect their child from suffering (or what they perceive as suffering). The idea that parents may be in conflict about the reality of their child's stuttering may then affect the relationship that parents have with their child and cause the child to perceive expectations of fluency or "living up to certain images" (Hughes, 2007; p. 49).
Looking back now, I believe that my parents (especially my mother) got stuck in chronic sorrow patterns. My mother has expressed many thoughts, such as "maybe if we didn't tell you to 'stop and slow down' it would have helped" or saying, "I'm sorry I couldn't help you." To this day, she frequently makes these types of comments when we talk about stuttering. My answers to her are words of encouragement, in order to assure her that she did nothing wrong and that my life is full of meaning. I believe that the motivational factors of guilt, sadness, and the need to protect their children are dynamic and powerful elements that can lead parents to behaviors toward their children who stutter that may appear hurtful. However, perhaps the actions of parents come from a place of confusion and fear - confusion due to a lack of answers and fear that they did something wrong or that they were inadequate parents. These thoughts of fear, confusion, guilt, and sadness may perpetuate the nature of chronic sorrow for parents of children who stutter.
The need and instinct some parents have to protect their children to the point of chronic sorrow is truly a tribute to the deep level of love that some parents possess toward their children. Parents may not have the knowledge to deal with acceptance and may then be doomed to circle the well of sorrow every time their children stutter. As a speech therapist and person who stutters, I believe SLPs needs to address parents' thoughts and emotional needs through counseling procedures as well as the needs of the child who stutters. It is important to target the loss of the "ideal" child parents may have built up in their minds and encourage the acceptance of their "actual" child. Hopefully, as the child who stutters learns to accept stuttering, parents are learning to accept their child as a whole, which includes stuttering
In closing, my mother and I have had more conversations about stuttering over the past several years since that snowy Christmas Day. I try to keep her updated on information, as I know it will ease her mind and will hopefully help to relieve some of the burdens of guilt and sadness she has carried for so long, which appear ingrained in her mind. Lastly, I hope our conversations help her to accept my stuttering and ultimately accept herself as a good mother, one who has always been truly motivated by love.
References:
Bowes, S., Lowes, L., Warner, J, & Gregory, J.W. (2009). Chronic sorrow in parents of children with type 1 diabetes. Journal of Advanced Nursing,, 65, 992 - 1000.
Eakes, G.G., Burke, M.L., & Hainsworth, M.A. (1998). Middle-range theory of chronic sorrow. Journal of Nursing Scholarship, 30, 179-184.
Hughes, C.D. (2007). Investigation of family relationships for people who stutter. Retrieved from OhioLINK Electronic Thesis and Dissertation (ETD). (BGSU 1174423351). Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 191-193.
