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Running head: GETTING A “SENSE” OF EVERYDAY LIFE WITH SENSORY INTEGRATION DYSFUNCTION

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Getting a “Sense” of Everyday Life with Sensory Integration Dysfunction Rachel Cason Samford University

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Sensory Disorders Most of us are born with what we consider to be five properly working senses. We hear sounds clearly, see words and objects (perhaps with the aid of corrective lenses), and enjoy the feeling of a variety of surfaces. Our senses typically allow us to function normally in our daily activities, so it might be surprising to discover that a large number of people have a slight sensory disorder of some kind. For approximately 5-15% of the population, though, this disorder is severe enough to cause distress or dysfunction (Dobbins, Sunder, & Soltys, 2007). If this is the case, the person might be diagnosed with Sensory Integration Dysfunction (SID), a disorder that interrupts the typical function of senses. This disorder can affect all aspects of daily life, but it is certainly treatable, and people with this disorder can come to lead normal lives. What Is SID? In a typically developing child, the right hemisphere of the brain controls visual-spatial perception and attention, as well as social and emotional responses to stimuli (Dobbins et al., 2007). The brain must process both external stimuli, which include visual and auditory cues, as well as internal stimuli, such as cues that control balance. If multiple cues arrive at the brain at the same time, the brain typically discriminates between them and integrates them all, but SID causes the brain to have trouble with this integration (Dobbins et al., 2007). As a result, people who have SID may be especially sensitive to certain sensations. There are several categories of SID that encompass different problems that might be caused by the disorder. One is a sensory discrimination disorder, in which a person might have trouble distinguishing one sensory signal from another. For example, a person with this form of the disorder might not be able to pick out a pencil from among other items inside a desk (Dobbins et al., 2007). SID could also cause sensory-based motor disorders, such as dyspraxia or

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a postural disorder. People with these disorders might slump or seem clumsy because they have difficulty participating in motor activities (Dobbins et al., 2007). SID might also cause a person to be hypersensitive, meaning that he or she is over-responsive to stimuli, or hyposensitive, meaning that he or she is under-sensitive (Gunn et al., 2009). It could also cause children to display sensory-seeking and attention-seeking behaviors, such as putting objects in their mouths to gain not only the sensation but also attention. In approximately 27% of cases, people who fall into one of these categories also fall into one or more of the others (Dobbins et al., 2007). SID is thought to be influenced by a few risk factors, such as abuse, family history, perinatal complications, and Autism Spectrum Disorders (ASD). Children with ASD often have sensory problems as well, and SID is often misdiagnosed as ASD. These children are also sometimes misidentified as having ADHD or bipolar disorder (Dobbins et al., 2007). However, once a correct diagnosis has been made, early intervention and treatment can begin to help children function normally. Social Interaction Sensory disorders like SID not only affect individual lives but also the lives of those around them. Children with SID often have different patterns of social interaction than their typically developing peers. In a study by Cosbey, Dunn, and Johnston, twelve children with sensory processing disorders were compared to twelve typically developing peers to evaluate their self-reported patterns of participation in social activities (2010). The children and parents completed a questionnaire about social interaction preferences, and the children were also called in for interviews about their habits at play. The qualitative results from the questionnaires and interviews were converted to percentages based on a scale of the maximum participation possible, and these percentages were then graphed and evaluated (Cosbey et al., 2010).

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The general results showed that both groups of children often claimed to have similar activity preferences, but they differed in their enjoyment levels of the various activities. For example, the children with sensory disorders reported much higher enjoyment ratings for recreational activities, such as coloring, playing make-believe, and playing computer games. They did not, however, enjoy puzzles or card games, which also fell under the “recreational” category. This indicates that children with sensory disorders tend to prefer activities that allow for creativity, rather than requiring them to abide by predetermined rules (Cosbey et al., 2010). In the category for physical activities, the group with sensory disorders indicated much lower participation in team sports, probably because motor problems are often associated with sensory problems. This also supports the idea that these children do not enjoy activities with established rules they must follow (Cosbey et al., 2010). In the category for social activities, children with sensory disorders had lower scores in areas of social networking, meaning that their typically developing peers had broader and more diverse social networks while children with sensory disorders tended to play alone or with their immediate family members. However, in the self-improvement category, the sensory disorder group had much higher scores in the “with whom” section. This is probably the result of the many different people these children go to for therapy. These children also demonstrated more skill-based activities than their typically developing peers (Cosbey et al., 2010). Although they may not initiate as many social interactions during play, these children often gain a variety of interactions and abilities because of the treatment they receive. A similar study conducted by Bundy, Miller, Qi, and Shia yielded similar results specifically for children with SID (2007). Participants in this study were observed while they played freely with toys and friends, and they were assessed based on a “Test of Playfulness”

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scale. After the initial assessment, the children were given twenty sessions of occupational therapy and assessed again. In both assessments, children with SID had lower playfulness levels than their typically developing peers, and the occupational therapy seemed to have no impact. However, the results did show that playfulness scores were slightly higher during sedentary activities than active ones (Bundy et al., 2007). These two studies suggest that children with sensory disorders such as SID prefer quiet, imaginative play rather than structured, active play. School Sensory disorders like SID can impact a variety of areas at school. According to Koenig and Rudney, the motor coordination problems associated with SID make math especially difficult during the early years, while reading problems tend to develop as children get older (2010). Sensitivity to touch can cause sleep disturbances, which may cause these children to be tired and restless during the school day, and loneliness coupled with a lack of coordination can greatly impact their social interaction in the classroom (Koenig & Rudney, 2010). As a result, teachers must be aware of the specific needs and routines of a child with SID. They may need encouragement and extra attention to feel comfortable in the classroom, and they may also need additional instruction in math and reading. Family Life According to Gourley, Henninger, and Chinitz, sensory processing also affects a child’s disposition and personality, and between 33 and 63% of children who have SID also have psychiatric problems as well (2013). As a result, parents of these children can easily become stressed. In the Gourley et al. study (2013), parental stress levels were the same for children with SID and Autism Spectrum Disorders. This might be true because SID is often misdiagnosed as a form of Autism, and even when SID is correctly diagnosed, the disorder and its symptoms can be

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ambiguous. As a result, children with SID are often labeled as bad children, or their parents might be labeled as bad parents because other people do not understand the complications of the disorder. This label may impact parents’ social lives and stress levels. SID can also cause tension in parent-child relationships because the child may not always react in predictable ways, even toward people the child knows well (Gourley et al., 2013). Not only can SID impact a child’s performance at school; it can affect relationships and stress levels at home as well. Treatment Despite the challenges faced by parents and children with SID, there are treatment options available that can be very beneficial. According to Dobbins et al., occupational therapy is and has been the most common form of treatment since SID was first identified in the 1970s (2007). In this form of therapy, the specially-trained therapist completes initial testing using questionnaires, observations, and standardized tests. The occupational therapist can then design a specific program that is guided by each individual child’s needs. This program might utilize weights, brushing techniques, or suspended equipment, such as swings (Dobbins et al., 2007). Along with the physical aspects, occupational therapy also aims to figure out what kinds of environments are best for the child (Dobbins et al., 2007). With this knowledge, families and teachers can establish routines that help the child become comfortable enough to achieve. According to Koenig and Rudney, though, occupational therapy should not simply provide knowledge about the most comfortable environments for these children (2010). They should also stretch the children to improve their social skills and branch out into their social communities. Occupational therapy should work to improve motor skills, and then it should incorporate those skills into the children’s daily lives to help them feel more comfortable with social interaction and participation (Koenig & Rudney, 2010). Because psychiatric issues are often at play as well,

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the child should be treated by a psychiatrist or psychologist as the need arises (Gourley et al., 2013). Case Study: Lizzie Lizzie Smith* was born with SID, and her earliest memories include ways she was affected by the disorder. As a child, she never liked to spin because she got dizzy easily, and she absolutely hated the feeling of sand on her feet. In fact, one of her baby pictures shows her doing everything possible to keep her feet off the ground at the beach. At age three she was diagnosed with SID, and she began treatment immediately. Her early intervention therapists gave her a long list of steps she would have to take if she “ever wanted to live a normal life” (Smith, 2013). Thanks to her grandfather’s financial generosity, Lizzie was able to begin occupational therapy at a very young age. At therapy, Lizzie remembers doing a variety of activities that she hated. Although she hated the therapy itself, she loved her therapist and maintained a good relationship with her. She had to play with spinning toys to try to help her adjust to the sensation, and she used a mixture of sand and paint to create finger paintings. She also had to hang “like a sloth” from a pommel horse to help her build muscle tone (Smith, 2013). As she got older, she started practicing activities that required her to follow specific directions. These activities helped her adjust to the kinds of things she would be doing at school. Lizzie also used a listening technique at home to help improve her sensory processing. She used special headphones to listen to Mozart and Beethoven while she played normally for a certain amount of time. The songs were specifically selected to help “wake her up” while she was playing (Smith, 2013). In addition, Lizzie started to develop problems with anxiety that stemmed from her SID. She then had to begin seeing a psychiatrist as well. *Names have been changed.

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Lizzie says that her disorder impacted her parents and sister as well, and the therapy consumed their lives and their time. Lizzie was checked out of school three days per week for occupational therapy alone, and she had to travel 45 minutes to get there. Lizzie’s sister, Amanda*, often traveled with them to therapy because she was too young to go to school. Amanda wanted to “play” with her sister at therapy, and she did not understand why Lizzie was allowed to participate when she was not (Smith, 2013). Therapy became especially hard on the whole family when Amanda started school. It was difficult to balance two school schedules as well as a complicated therapy schedule. Lizzie’s mom stayed at home to help facilitate everyone’s schedules, and her grandfather continued to support her financially. During her early school years, Lizzie got up every morning to do a series of exercises before leaving for school. Because she was under-responsive (hyposensitive), she needed had to spend extra time “waking up [her] senses” before she was ready to begin her day (Smith, 2013). She had to do jumping jacks and swing for ten minutes in the garage, and her mom used compressions and a brushing technique to help her senses begin to respond correctly. The brushing technique required special training and a special brush, and Lizzie’s mom was trained to carefully brush Lizzie’s arms, legs, and feet. Compressions then loosened her joints and relaxed her head. As she got older, Lizzie learned to do these exercises for herself. After her morning routine was complete, she would be dropped off at school. At school, Lizzie struggled with learning disabilities that accompanied her SID. She particularly hated spelling because she was not good at it. All of her spelling tests were completely oral, but Lizzie needed multiple representations for the words to make sense to her. As a result, she also hated practicing her spelling words, and homework time became a challenge for Lizzie and her parents. Lizzie was always exhausted after a long day at school, which made it *Names have been changed.

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difficult for her to feel motivated to do homework once she arrived at home. She often spent hours working on small assignments, but her parents were always there to help her. Despite her effort, however, Lizzie still struggled in spelling and other subjects at school. Although she received A+’s for effort grades, she fought to receive C’s on her academic grades. This discrepancy led to meltdowns, with Lizzie often crying, “I’m not smart enough” (Smith, 2013). Much of the problem was due to Lizzie’s lack of an IEP. Until fourth grade, Lizzie’s principal told her family that Lizzie did not qualify for an IEP under any categories. The family was redistricted, though, when Lizzie was in fourth grade, so her parents met with the new principal before school started because they were worried about how Lizzie would adjust. Her mom had to research and present data at this meeting because the previous teachers and principal did not help with gathering information for an IEP. The new principal could not believe that Lizzie had not been given an IEP long before, and she said she would absolutely get the paperwork together for the IEP. “I was a happier, more productive child with an IEP,” says Lizzie (Smith, 2013). After getting the IEP, Lizzie was allowed to have snacks in class when she needed them and get extra time for tests. Before the IEP, Lizzie’s teacher refused to let her have pretzels during class because the other students were not allowed to have snacks. Lizzie’s mom fought for this privilege, however, and her teacher was amazed when she saw how much a small snack could impact Lizzie’s attention and learning. Many issues like this one were nonexistent after the IEP was in place. The new privileges came with their own set of problems, though. Lizzie sometimes faced bullying because she got special treatment, but she stayed strong through it. Lizzie didn’t start loving school until sixth grade. She had adjusted to the IEP, she was beginning to form strong friendships, and she loved her homeroom teacher. However, the

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independence that came with middle school also proved challenging. Teachers stopped checking to be sure that she was taking all her homework assignments home; as a result, she often forgot her assignments and had to go back to school to get them or call a friend for the problems. As Lizzie adjusted to new school challenges, she continued to make improvements in her therapy. By now she was well on her way to life without an IEP. Occupational therapy faded out by the beginning of middle school, with Lizzie making improvements that most people never expected her to make. When Lizzie started her senior year of high school, she achieved an enormous goal: she no longer needed her IEP. She graduated without it and now functions wonderfully in college. She still has some lingering traits, however. Although she can walk along the beach long enough to get to the water and back, she still doesn’t like the feeling of sand. When she took a ballet class last year, she was reminded of how much she hates spinning when her teacher asked her to do several turns in a row. She also still has anxiety attacks from time to time, but she has learned ways to calm herself when that happens. Despite these minor effects, Lizzie’s SID no longer impacts her day-to-day life. According to Lizzie, her therapists “never expected her to make it this far” (Smith, 2013). Her symptoms were severe when she was young, and she credits her many therapies and early intervention for bringing her to her current state. She says she would never have made it out of the “mentally disabled” IEP category without her therapists’ assistance, her grandfather’s financial support, and her parents’ unwavering attention. Advice for Teachers Lizzie says that good teachers were another crucial piece of her success story. In second grade, however, she had a teacher who read out her name and grade after every test, which let the entire class know that Lizzie often struggled with tests. She then had to run laps around the

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playground if she made below a certain grade, and she could not handle the physical or emotional stress. Because she was so miserable, Lizzie was allowed to switch to another class in the middle of the year. The new teacher was a vast improvement, and to this day she remains one of Lizzie’s all-time favorites. Lizzie uses this example to emphasize that “teachers do make a difference!” (Smith, 2013). Her best teachers were those who constantly paid attention to her in class and made sure she was on top of her assignments. She also stresses the importance of parent-teacher communication. Parents are the experts on their children, and teachers must be willing to listen to the parents and try what they suggest. Lizzie also says, though, that she doesn’t believe every teacher will be a good fit for every student, and that is not necessarily a bad thing. She felt that she “clicked” with some teachers better than others because of their different teaching styles (Smith, 2013). However, this does not give teachers an excuse not to try to reach every student. Teachers must take initiative to learn everything they can about their students and give them the best opportunities possible. Conclusion Sensory disorders, such as SID, have a significant influence on the daily lives of the affected child and everyone involved in the child’s life. Specific sensory aversions can make everyday activities difficult, and associated complications can make school a challenge as well. However, Lizzie is living proof that the right therapies and interventions can lead to complete recovery. Although she may always have a few lingering symptoms, SID no longer consumes her life. Her story illustrates that with therapy, family support, and the help of good teachers, the lives of children with SID can be completely changed for the better.

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References Bundy, A. C., Miller, L. J., Qi, L., & Shia, S. (2007). How does sensory processing dysfunction affect play? AJOT: American Journal of Occupational Therapy, 61(2), 201+. Retrieved fromhttp://go.galegroup.com/ps/i.do?id=GALE%7CA208275789&v=2.1&u=naal_sam& t=r&p=AONE&sw=w Cosbey, J., Dunn, M. L., & Johnston, S. S. (2010). Sensory processing disorders and social participation. AJOT: American Journal of Occupational Therapy, 64(3), 462+. Retrieved fromhttp://go.galegroup.com/ps/i.do?id=GALE%7CA263786168&v=2.1&u=naal_sam&i t=r&p=AONE&sw=w Dobbins, M., Sunder, T., & Soltys, S. (2007). Nonverbal learning disabilities and sensory processing disorders. (Southern Illinois University), Available from Lexis Nexis. Retrieved from https://mailattachment.googleusercontent.com/attachment/u/0/?ui= 2&ik=aaa5041044&view=att&th=1415d594192da405&attid=0.1&disp=vah&zw&saduie =AG9B_PXLSlsc4l8mE0tUnh31QUi&sadet=1384227979597&sads=WwdIPgPUCjKC Md25PmMOVIMsxjw Gourley, L., Wind, C., Henninger, E., & Chinitz, S. (2013). Sensory Processing Difficulties, Behavioral Problems, and Parental Stress in a Clinical Population of Young Children. Journal Of Child & Family Studies, 22(7), 912-921. doi:10.1007/s10826-012-9650-9 Gunn, T., Tavegia, B., Houskamp, B., McDonald, L., Bustrum, J., Welsh, R., & Mok, D. (2009). Relationship Between Sensory Deficits and Externalizing Behaviors in an Urban, Latino Preschool Population. Journal Of Child & Family Studies, 18(6), 653-661. doi:10.1007/s10826-009-9266-x

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Koenig, K. P., & Rudney, S. G. (2010). Performance challenges for children and adolescents with difficulty processing and integrating sensory information: a systematic review. AJOT: American Journal of Occupational Therapy, 64(3), 430+. Retrieved from http://go.galegroup.com/ps/i.do?id=GALE%7CA263786165&v=2.1&u=naal_sam&it=r& p=AONE &sw=w Smith, L. (2013, November 13). Interview by R. Cason.