Perspectives on Fluency and Fluency Disorders 19 58-61 July 2009.
doi:10.1044/ffd19.2.58 Copyright 2009 by American Speech-Language-Hearing Association
"Cluttered" Parenting
Charley Adams
Department of Communication Sciences and Disorders, University of South Carolina
Columbia, SC
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Abstract
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This article is designed to call attention to the experiences of being a parent of a child who clutters. Three parents were interviewed. Although their stories are very different, they share similar challenges. Difficulties include struggling to understand a child who clutters, obtaining an initial diagnosis of cluttering, finding a speech-language pathologist with the knowledge and skills to work with a child who clutters, and helping a child with cluttering learn how to socialize with his/her peers.
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Introduction
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For this article, telephone interviews were conducted with three parents of children who clutter. The first (Denise) is a mother living in Illinois with her 8-year-old son, the second (Jim) is a father living in California with a 14-year-old son, and the third (Ida) is a mother living in North Carolina with her 10-year-old daughter. Their experiences and journeys are diverse, but their stories share common themes. What follows are segments of those stories that illustrate some of the challenges parents face when getting help for a child with cluttering.
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Diagnosis
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In most cases, simply arriving at a diagnosis of cluttering is a tedious, often circuitous, process. Parents are often provided with multiple alternate diagnoses before learning that their child clutters. Denise's son Reginald was initially diagnosed with hearing loss secondary to multiple ear infections, but this did not seem to explain all of his difficulties. His speech was very difficult to understand, and his reading skills were well behind his peers in Montessori school, despite his mother's efforts to provide additional reading intervention. Denise brought him to several doctors, before they were referred to the Mayo Clinic in Minnesota, where Reginald was diagnosed with dyslexia. At the clinic, Reginald was also evaluated by the speech-language pathologist (SLP), who diagnosed Reginald with cluttering.
Jim knew early on that his son Jason was delayed in his development of speech and language, but, as was the case with Denise and Reginald, the pediatrician advised Jason's parents to wait until he was older before subjecting him to any testing. Jim said that, as far as he could recall, sometime when his son was in the second grade, Jason received genetic testing and testing for auditory processing difficulties. A speech-language pathology evaluation resulted in a diagnosis of a language delay, and Jason began receiving speech therapy. His parents were not convinced that all of their son's needs were being addressed. When testing for attention deficit disorder came up negative, they were told that Jason "just needed to mature more." Jason continued to receive speech therapy through private and public schools. At the close of Jason's 5th grade year, a speech-language pathologist mentioned the term "cluttering." They had just begun to explore this when the school year ended. Not wanting to wait through the summer to explore the potential diagnosis further, Jason's parents arranged to have their son evaluated at a nearby university clinic. After a thorough evaluation, a diagnosis of cluttering was confirmed.
When Ida grew concerned about her 3-year-old daughter Rachel's rapid, jumbled speech, she consulted a physician. The doctor explained that this situation was common for 3 year olds, Rachel should grow out of it by age 6, and the family should not call attention to it for fear that Rachel would withdraw from speaking. When Rachel was 6, the family was living in Malaysia. Rachel's teacher at the International School in Kuala Lumpur asked Ida if she would consent to have Rachel evaluated by their SLP. Ida readily agreed, and the subsequent evaluation brought them the diagnosis of cluttering.
It is worth noting that, while stuttering can be diagnosed as young as age 2 (Yairi & Ambrose, 2005), a diagnosis of cluttering rarely occurs younger than age 7 or 8 (Ward, 2006). There are several possible explanations for this. Certainly, the reduced awareness of cluttering among the public and professionals plays a role, but some point out that many of the signs we look for to diagnose cluttering may not emerge until children are older (Ward). Not unlike the characteristics of cluttered speech production, a diagnosis of cluttering can be associated with a diverse, seemingly unrelated collection of components. Speech-language pathologists with the necessary training and experience to make a cluttering diagnosis are an almost invisible minority in our profession.
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Finding Help
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What is it like to have your child diagnosed with cluttering? Denise described feeling incredibly relieved and "refreshed" to have this diagnosis, so that the family could finally set about the task of addressing it appropriately. She would soon learn, however, that getting treatment for cluttering can be as difficult as obtaining the original diagnosis. Denise, who lived in Chicago, found an SLP working out of a private office in a Chicago suburb. Therapy began very well, but 4 months later the family relocated to Peoria, Illinois, a much smaller metropolitan area, where Denise struggled to locate an SLP familiar with cluttering. Subsequently, Denise sought assistance from faculty at Illinois State University and was connected with an SLP proficient in cluttering, who began working with Reginald in September 2008.
Jason was finally diagnosed with cluttering at the University of the Pacific's Communicative Disorders clinic; unfortunately, bringing Jason to the university for therapy was not practical logistically. Jim spent 6-7 months looking for an SLP knowledgeable about cluttering. Jason continued to receive language therapy at school, but for issues such as critical thinking rather than for cluttering. The family finally found an SLP closer to home who began seeing Jason for cluttering in November 2008.
Shortly after Rachel was diagnosed with cluttering, her SLP began working with her on organizing her thoughts for clearer verbal expression. Rachel began to monitor her speech more carefully and began to self-correct some of her cluttered speech. When the family moved to North Carolina, Ida was able to transfer Rachel's Individualized Education Plan; however, the SLP at her new school felt that Rachel was not cluttering. Although Rachel has had a few therapy sessions at school, Ida said that the school administrators expressed the belief that, as a B student, Rachel "really doesn't have to come" to speech therapy. Ida believes that the school is trying to have Rachel discharged from therapy altogether. Meanwhile, the self-monitoring that had begun to emerge in Malaysia was disappearing, and Rachel was difficult to understand. Ida sought out an evaluation by a private SLP, who confirmed the diagnosis of cluttering. Ida is considering bringing Rachel to work with this SLP, despite the logistical difficulties of doing so. At school, Ida continues to defend the diagnosis of cluttering and to advocate for appropriate services.
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Social Implications
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Like stuttering, cluttering can have a tremendous impact on children socially. Despite the fact that Reginald is very personable and loves to talk, other kids "aren't very patient with him." Denise explained that Reginald has had a hard time meeting kids at the new school and that he seems to prefer talking to adults at times "because they understand him better."
Jason's father, Jim, has come to terms with the fact that Jason will struggle with cluttering for a lifetime. Jason is making good progress in therapy, but Jim realizes how challenging it is for Jason to socialize with other kids. Jim has started an online ‘Meet-Up’ group for people with cluttering (go to www.meetup.com and search cluttering) so that Jason and others will find support by spending time with people living with the challenges of cluttering.
Ida knows that Rachel needs to sharpen her conversational skills, because Rachel's cluttering begins to "come out" as she gets more comfortable in social settings. For people who clutter, the vigilance required to self-monitor can be extremely demanding, even more so in a social context.
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Life Goes On
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Parents of children who clutter, like those with children who stutter, often eventually recognize that, while it would be very nice for the disorder to simply go away, the important thing is that their child is not held back by cluttering. Denise recognizes that cluttering is something that Reginald will have to work on for the rest of his life. She hopes that others will not only understand him easily, but will also enjoy listening to him as much as he enjoys talking to them. Reginald has a passion for politics and talking to people; Denise doesn't want his communication challenges to get in the way of his ambitions.
Jim is very grateful for the progress that Jason has seen in therapy and admits that having a conversation with him has gone from being a "workout" to being "enjoyable." Jim knows that Jason will battle cluttering throughout his life and wants to be sure that he and other children who clutter and their families have the resources and support that they need.
Ida wants Rachel to have a toolbox full of useful ways to cope with her cluttering, including tools to enable her to confidently make presentations in front of the class. She wishes for Rachel a strong ability to recognize her cluttering behaviors, self-correct when necessary, and express herself clearly.
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Conclusion
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In 1964, Deso Weiss referred to cluttering as an orphan in speech language pathology (Weiss, 1964). Sadly, this analogy is still viable today, as parents of children with cluttering desperately search for help. Simply arriving at the diagnosis of cluttering can be a difficult journey, only to be followed by an equally challenging path toward appropriate intervention.
Cluttering is hard. It's hard to find cluttering; prevalence data for cluttering is limited, though many feel that cluttering is both under diagnosed and misdiagnosed as stuttering (St. Louis, Myers, Bakker, & Raphael, 2007). Since it's hard to find cluttering, it's a difficult condition to study; research gains power with increased numbers of participants. Cluttering is also hard to define, because it can be realized across a wide range of eclectic behaviors, tendencies, and characteristics. Consequently, it's hard to diagnose cluttering reliably. Once diagnosed, cluttering can be hard to treat. Surely, cluttering is hard to live with. Children with cluttering are frustrated with a world that has difficulty understanding them. Parents of children with cluttering struggle—first, to understand their children and, then, to arrive at a diagnosis. Once they have a diagnosis, parents soon learn that the real battle has just begun. Depending on where the family lives, simply finding a speech-language pathologist with the knowledge, skills, and confidence to help with cluttering can be the hardest task of all.
Resources for cluttering may be difficult to find, but they are available. The Stuttering Foundation of America recently published a DVD on cluttering for speech-language pathologists, teachers, parents, and individuals who clutter (St. Louis & Meyers, 2007). Links to this and other resources on cluttering can be found at the International Cluttering Association Web site: http://associations.missouristate.edu/ICA/
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References
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St. Louis, K., & Myers, F. (2007). Cluttering . Memphis, TN: Stuttering Foundation of America.
St. Louis, K., Myers, F., Bakker, K., & Raphael, L. (2007). Understanding and treating cluttering. In E. Conture & R. Curlee (Eds.), Stuttering and related disorders of fluency (3rd ed., p. 297-325). New York: Thieme.
Ward, D. (2006). Stuttering and Cluttering: Frameworks for understanding and treatment . New York: Psychology Press.
Weiss, D. A. (1964). Cluttering . Englewood Cliffs, NJ: Prentice-Hall.
Yairi, E., & Ambrose, N. G. (2005). Early childhood stuttering: For clinicians by clinicians . Austin, TX: PRO-ED.
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Abstract
Introduction
