Family Issues in Special Education - Large Print
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Teacher Favorites Reading Part 1 Reading Part 2 |
by Rodney Blakeman, Kari Mertsch, and Joan Aitken
This story is about a single mother with three children. Her baby was born with microcephaly and anencephaly. Rita and the baby were sent home from the hospital the next day, and Rita had no knowledge of what was wrong. The HMO called Child Protective Services. After five years, Rita still struggled to save her baby. "Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. . . .There is no treatment for microcephaly." NINDS Microcephaly Information Page "In anencephaly, the brain initially protrudes through a defect in the cranial vault (exencephaly) and is gradually destroyed because of mechanical injury and vascular disruption. Eventually, all that is left is a small, vascular mass of disorganized neural tissue."Neuropathologyweb.org
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"Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed--not covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur." NINDS Anencephaly Information Page
Fig. A: Anencephaly
Fig. B: Microcephaly
Kari Conducted an interview with her school social worker, Karen Disanto, Social worker. The doctor needs to communicate with the patient, but they aren’t knowledgeable about support. They tell them in medical jargon what’s wrong with the child. Some physicians can do that in an understanding way, but most don’t. It’s usually confusing. Every hospital should have a social worker. The social worker does have to talk to the doctor first. There’s a communication gap.
Gateway Organization is the one in KC that helps families who have children with certain needs. It’s hard for families to get in. KC Regional—has a seven year wait. Platte County Bureau of Services Children’s Mercy has 4-6 month wait.
Talked in general terms. Children in early grades with other problems that there’s not information or support on. There are lots of unnoticed hidden problems that parents don’t get the support for.
At what stage does the doctor tell about the support. “They don’t.”
Collen Pleiss, Social Worker with a background as a social worker liason at Children’s Mercy.
Ruby Payne give a lot of strategies on working with families.
Whatever the disability, there should be some type of national organization. Then off of that, there should be a local avenue off that. You have to seek those out yourself.
Teachers can send parents to school social worker.
Support Groups: Park Hill used to have a group for ADHD parents, but no longer have it because of low attendance. It wasn't doing its job.
Source: Karen Disanto, Social worker
Irving Independent School District v Tatro Important Law Cases in Special Education (Northern Arizona University) Wrightslaw Special Education Law and Advocacy The Law and Special Education (Yell)
Children's Mercy Hospital
lMain
Contact:
Phone: 816-234-3670 ¡The Social Work and Community Services Department provides many services including: lReferrals to community resources lAssistance with transportation lFacilitation of communication between family members, medical staff, and community agencies lSupport groups
Kreamer Family Resource Center and Health Sciences
Library ¡Winner, Brenda. Ten Perfect Fingers. (1999) l A book about a family who had a child with anencephaly ¡Alexandra’s House: hospice care for terminal infants ¡Ethics Committee ¡Pediatric Palliative Care Service: helps family and staff care for terminal children
¡ ¡Library of specific diagnosis card catalog ¡Family resources ¡Hospital information ¡Legal issues
¡ Resources for Siblings of Children with Disabilities The Sibling Slam Book ¡Sibshops ¡Siblings; Coming back unstuck and putting back the pieces ¡Views from Our Shoes ¡What About Me? Growing Up with a Developmentally Disabled Sibling ¡Living With a Brother or Sister With Special Needs: A Book for Sibs
Quoted Directly from http://www.hoagiesgifted.org/eric/ld-sped.html
ADDULT
ADD http://www.ed.gov/rschstat/research/pubs/adhd/index.html
What would you do? Talk to partner? Stereotyping Discussion. What comes to mind when you hear words like cowboy single parent support group ethnic diversity advocacy for their children overprotective mother HMO A child diagnosed with severe mental retardation. uneducated parent doctor father mother daughter son drug addict. family African American high school dropout the military your child has medical condition Anencephaly life-threatening illness poor person poverty sibling disability
Draw a picture of some of these. Background schema
Put up words. Describe in 15 seconds. Then talk with partner. We think Rita was stereotyped from the beginning.
Have some words come up. The team can see the word, and tries to get the person to guess the word. The whole class throw out words. Use as much we have time for.
As teachers, how will you approach parents about problems with the child. Family has resources, but they denial or can't figure it out. You have to be careful about what you say. Well to do family. Mother stay at home parent. Son is in 5th grade, cannot add or subtract. When she asks for advice, how do
If there's a situation with a child environment at home is single parent, in crisis. Mother in and out of jail. Off and on drugs. No car and no phone. Child has behavior and learning problems. How will you address this parent. Will it be different or the same?
Ask Sandy what we should do?
When what you're doing in the classroom isn't working, what do you do? Response to intervention? At some point, the parent has to act. With ADHD, need a medical diagnosis. The team rules out learning disability.
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Learning disabilities is a frightening diagnosis for children.
Each of us think and learn differently.
Nathan. Communication skills ahead of others. Active. Loved to read. Leader. Couldn't hear the sounds of the alphabet. He couldn't really read Very concerned with being judged. Profoundly deficient. Difficult to understand when he's so articulate. Not what parents wanted to hear. He memorized entire books. Work Nathan had to repeat first grade. Had tutor, but f Had memorization skills to get buy, but could not do new material.
Test is not enough and unnecessarily labels kids. Trouble with rhyming suggests trouble with phonemic awareness. Works so hard reading, can't figure out what means. Also causes critical self esteem issues. you won't see it in oral language. Will have writing problems too. Will avoid and escape reading and look like they have attention difficulties because trying to get away from something very painful.
Lauren Forgets what she's doing. Mind wanders constantly. Everything takes time. Doesn't complete work. Talks out of turn. Conversation with neighbors.
If we don't get to kids by nine years of age, the probability of learning to read is minimal.
When social skills are a kids strength, a parent worries about the stigma of the resource room. Can you put a kid in a situation where the child will fail?
Will have gains, plateau and setbacks. Unpopular. Few friend. Lonely. May not be able to read a social scene. Disorganized. Can differentiate between trash and masterpieces. Lauren needs a focus coach. Before she can learn, need to address a flaw in her brain chemistry. Use a medication like Ritalin. Are we raising a generation of overmedicated kids. Learn compensatory strategies to carry over when not taking the medication. Struggle with the question of whether to medicate. They don't want to lose their fanciful daughter with medication. For this child, they switched schools to give a clean slate. When kids feel terrible, it's a social setback, not a school work setback. After taking medication, the whole family is less stressed, less worried. Smoother life when taking medication.
Sara. Has lots of friends. Harlem. At first a standout student, motivated, verbal, and a leader. In forth grade became shy in history, homework took a long time. Comprehension and vocabulary were low. Personality in class and out were quite different. Had trouble with words associated with nouns. Can't retrieve the words she needs. Affects abstract thinking. Literal interpretation. Concrete. Fourth grade is more abstract thinking. She faked her way through earlier grades. Expressive language problems come along 3rd or 4th grade. Have an inner language but can't express it. I know the answer, but it won't come out the way I was thinking of it. Expressive language deficiency. Strategy--a full immersion experience of talking about issues, more abstract way, using complete sentences. The best way to learn to talk right is to practice. It's almost almost like working out for a sport. You have to feel safe, know you're comfortable. Once they start taking the risk, the effect is very positive. Practice conversation. New vocabulary words. She's found ways to help herself.
Adam. Well liked by adults. Well mannered. Teachers called him lazy. By fifth grade, problems were obvious. Battery of tests suggested average. IQ tests. Scores added together were average. But struggled with reading, writing, and spelling tasks. Doesn't know how to read. By the end of seventh grade they said he was reading 3rd grade level. Adam thought he was stupid. The school said Adam started working on ways to get out of school. Some teachers 2 months of the year had never seen him. He ran the streets. He was mad. He can't read. Reading problems affected his writing and spelling. They gave behavioral descriptions at the school . Breaks down the self esteem. Adam turned to drugs and alcohol. Need to earn ways to compensate.
Success is like a vitamin. It's tough to grow up success deprived. Has an output problem. Effort is too much effort. Their intake is so good. Creative Can analyze. Good ideas. Not efficient in output. Demystification. is the most important movement in the field. Explain to the child what the problem is. We do that with disease. Don't protect the child. Sometimes the child takes great comfort in the diagnosis. Grapho motor problem. It was specific and seemed manageable.
Nathan #2 Discipline problems from kindergarten. ADD without hyperactivity. Distractions take him off task. Used Ritalin, but there was no magic pill. Not able to learn. People didn't like him. Hated everything as far as school goes. "I just shouldn't be alive." Trying home schooling, but parent is not prepared. The most basic is a challenge for child and mother. Frustration turns to anger. Loses control, which is frightening. Plummeting self esteem. Can't stop crying.
Cleaned out college fund to send him to military school. Kids often have good starts in new environments, but it doesn't last. Early recognition of the problems. 3rd and 4th grade literacy rates predict prison. Need consistent strategies. Reading problems is a public health concern The most interesting people have a different kind of brain Never lose sight of your strengths because they are what will take you to great heights. It's hard to believe some of the things that happen to kids. Labels and supports issues.
Never call a kid lazy. Kids are NOT lazy, it is something else..
When professional says "he needs special education instruction," then need IEP.
Talk on the child's level when you demystify--use child friendly language.
Dr. Clutter is anti-retention. Retention makes a kid older and increases likelihood of dropping out. That's all according to research. 2-3 years later are worse off. Do other things. If kids are having ADHD issues, they WILL medicate themselves.
Never say "If it were my child." Ask if they have a physician's appointment coming up. and if there's a Meet in two weeks.
Schmit's chapters 1 and 2 questions in intentional helping. Respond to reflection questions as you go through. Do 2 per chapter. Due when we return. |
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A paper presented at the Poster Session of the annual meeting of the Midwest Symposium for Leadership in Behavior Disorders. February 22, 2008 Joan E. Aitken Abstract: A content analysis was conducted of 1718 emails parents sent to each other during the summer in an online discussion support group. The parents of children who have been diagnosed as eligible for special education services. The findings suggest that these parents were most concerned about understanding the diagnosis and testing process, communication with the school, and IEPs. Although parents talked most about their children's reading, social skills, and writing, there was relatively little discussion about listening, speech communication, and nonverbal communication. Additional concerns included diagnosis, parenting stresses, and communication with professionals.
Joan E. Aitken (Ed.D., University of Arkansas), is a Professor of Communication Arts at Park University, 229 Copley, 8700 NW River Park Drive, Parkville, MO 64152, phone 816-584-6785, Joan.aitken@park.edu and Professor Emerita, University of Missouri – Kansas City. The author expresses appreciation to Gabriela SaTeles of Park University for her research assistance and Dr. Sandra Clutter of the University of Missouri-Kansas City for her review of this manuscript. Parental Concerns about Communication Needs of their Children Access to private opinions about children is a difficult area to research. With the advent of online discussion groups, however, many parents are willing to disclose information about their ideas and feelings about their children. This online phenomenon provides research information in multiple ways. First, one can analyze the overall functions of the online discussion support group. Second, one can analyze what individual group members have to say about their communication with educators about their children with special needs. The purpose of this article is to examine the nature of parental concerns about communication skill development of their school-age children who qualify for special education services. A student’s communication ability is the single best predictor of school success because of the correlation between communication skills and positive peer relationships and academic achievement (Sage, 2001, p. 423). Although effective communication can be a challenge for any child, students with disabilities often have additional communication problems that interfere with their successes (Meadan, Ostrosky, & Halle, 2006; Rinaldi, 2003). Mack and Warr-Leeper (1992) found that boys with behavior disorders often have poor or inconsistent language skills. Sanger, Maag, and Spilker (2006) suggested that for girls classified as “juvenile delinquents,” interpersonal communication skills are particularly problematic. Ritzman and Mitzo (2007) found that students who had been violent improved social adjustment, academic performance, and behavior when they receive speech and language services. The difficulty of some children is exemplified by this parent’s words: “Socially, he was teased and was more or less an outcast.” Assuming that communication skills are a factor in student success, the author sought to determine parental perceptions about the communication of their children, although research included, but was not restricted to, children with behavior and emotional disorders. This parent’s words gives insight into the challenges of children with behavior disorders: “The child is so discouraged that he doesn't believe that he is able to control his behavior.” So, how can one gain insight through the study of an online parental support group? First, by examining the group’s communication functions, the educator can better understand the needs of parents who have children with behavior and emotional disorders. Second, teachers may gain insights into more effective instruction for children with behavior and emotional disorders. For the purpose of this research, a content analysis was used to consider parental concerns in communicating with and about their children with educators. Two areas of expressed concern were those of family talk and family conflict related to their children with disabilities. Creating Narratives Story-telling is a crucial communication skill, which requires cognitive, knowledge, and language skills (Soto & Harmann, 2006). Communication scholars, educators, and psychologists have examined the purpose and effects of story-telling in many contexts. For example, story-telling helps people to make sense of their experiences through interpretative processing, particularly when using reflection about difficult experiences (Bochner, Ellis, & Tillmann-Healy, 1997; Koenig Kellas & Trees, 2006). Self-disclosure about difficult situations can have positive effects on an individual’s well-being (Clark, 1993; Pennebaker, 2003). Thus, story-telling can be viewed as important for personal and therapeutic reasons in multiple contexts. Genereaux and McKeough (2007) contended that narratives are crucial in meaning-making and social-psychological understanding. Black (2008) suggested that people in groups mediate differences based on their dialogic interactions, which can be particularly important in an online group. Koenig Kellas and Trees (2006) observed that families used joint-narratives to make collaborative sense of experiences. Kyratzis (2005) suggested that story-telling is a primary way that families convey values and culture to their children. Family stories tend to be highly personal (Sherman, 1990) To some extent, the online discussion support group provides the same possibility of making sense of difficulties with children, schools, family members, and professionals through shared story-telling. The Nature of Online Support Groups With the advent of electronic listservs and the Internet, opportunities for support and information-sharing have increased through the use of online communities (Shedletsky & Aitken, 2004). These groups are available on a range of topics, which can bring together people from diverse locations. Online support groups have provided a new area of research interest. Royal (2005), for example, analyzed research about the Internet and women. There seemed to be equal access, but less comfortable participation by women and a less welcoming context for women. Ye (2006) found that international students in an online support group received more information and felt less stress. Kuster (2007) also found information value in online groups, including the fact that support groups can provide information through Internet links. There is some question about the reasons people select an online discussion group instead of a face-to-face group. These reasons may include frequency of interaction, availability, a sense of anonymity, convenience, and the lack of pressure to talk in a group. Mesch (2006), for example, suggested that people with low self-esteem were more likely to be frequent Internet users. These groups provide opportunities for learning and empathy for people who share interests or concerns. There are numerous online groups specifically for people with interests in or concerns about children with disabilities. An updated version of the ERIC Clearinghouse on Disabilities and Gifted Education list includes 55 different online discussion groups on the topic of learning disabilities and special education ( http://www.hoagiesgifted.org/eric/ld-sped.html ). The value of online support groups can be as important to the members as a face-to-face support groups are to their members (Turner, Grube, & Meyers, 2001). Further, the sense of anonymity in the nature of online interaction may actually increase the quality and depth of member responses through personal disclosure, reciprocity, and personal acceptance (VanLear, Sheehan, Withers & Walker, 2005).Peer Communication and Social Interaction. These discussions included how the child interacts with peers, table manners, and other social skills. Parents discussed story-telling as a way of teaching social skills. Parents discussed situations where their children are isolated or ostracized. As Polloway, Miller, and Smith wrote: “Conversational competence takes on greater importance as students strive to fit in with their peers participate in social peer groups, and move toward greater independence from parents” (p. 222). One parent sought information on helping her child: “It was suggested that my child also might need social interaction facilitation by an adult in unstructured settings and a peer buddy to help with peer interactions (how do we find these?).” Parents can often figure out contextual cues, which may be helpful information for teachers, such as indicated by this parent: “I was thinking about his social problems and realized the problems usually occur in situations when he is excited, like a party or the theme park. If he is with a friend one-on-one, whom he finds interesting, he is usually well behaved.” Method This research analyzed public archives of an online support group for parents of children with behavior and emotional disorders. The online discussion group was selected for study because of the support group’s focus, the large number of active parent participants, and diverse concerns. A content analysis was conducted on 1718 emails from this online discussion group of parents of children diagnosed with disabilities. Their children included young children through adults. The group is an open forum for parents to discuss their children who have exceptionalities. The discussion includes conversation about school services, working with teachers, seeking correct diagnoses, interventions that work, parenting methods, sources of information and support, and health and nutrition concerns. The discussion group is open to anyone who has a connection to a child with disabilities, such as a parent or teacher. Among those who post, there are parents, teachers, and professionals, females and males, adult through retirement age, and members who live in the United States and other English-speaking countries. Nearly all the people who post to the discussion are mothers—many single mothers--of children with disabilities who live in the United States. As one mother wrote: “I remember that somebody on this list once remarked on how many of us mothers were single moms. So I'm sure you're not alone.” Given the societal trend of the mother having major responsibility for parenting, the predominance of women in the group appears appropriate. More than 70 people posted during the period studied. Nearly all parents reside in the United States. In some situations the child has undiagnosed behavior and emotional disorders. The postings were categorized according to parental comments about communication. Concern for a topic was analyzed according to the nature of the content and the number of words posted about the subject. Postings with a large number of words suggested high concern, with the interpretation that the more parents discussed the topic, the most concern they felt toward the topic. Non-duplicated content revealed more than 300,000 words in the emails analyzed. The content was then categorized so that the number of words could be used to determine the percentage of discussion about each communication topics. Word Frequency, Intensity, and Clustering In cluster criticism (Burke, 1966), the analyst actually counts individual words used in communication. The analyst can examine the frequency, intensity, and clustering of certain words. By looking at the frequency of word use, the communicator gives a clue to what is most important. If you look at the manuscript of a speech for example, you can easily count words and determine the important concepts based on the sheer number of times certain words are uttered. While that analysis may be more difficult when listening in a normal conversation, the strategy can be adapted to help one figure out what is going on in the communication event? In one sense the counting of words gears us into the literal meaning. By discovering the most important words, we can focus so that the myriad of other words does not confuse the literal meaning and we can understand the content. Here are questions you can ask yourself while listening and interpreting a communication event. Frequency. “What words are used most often?” When one identifies some high frequency words, they can give insight into what the person thinks is most important. For example, the frequency of these words suggest they are the types of communication about which group members had the most concern: writing (520), reading (481), and oral expressive language (222). Intensity. “What words are used that suggest an intense emotional reaction?” This analysis may help us discover parental concerns. Here is an example of language intensity as one woman complains about her lack of parental understanding regarding her child with disabilities: “My folks have yelled things at me like, ‘the only thing wrong with your kids is their parents.’" When a parent listens to a teacher’s feedback, for example, perhaps the teacher uses the word “stupid,” when referring to “stupid mistakes.” The word “stupid” is clearly an intense word. The parent may think about the teacher thinks the child is stupid or wonder how any mistake because of a learning problem could be stupid. While this strong word may prompt a defensive reaction from the parent, if the parent can approach the interaction as an objective analyst—certainly difficult in an emotion-laden situation—the parent may gain meaning by asking about the intense word. For example, “I’m sorry you’re upset about my son’s work, and I’m trying to understand the problem. What did you say was ‘stupid?’” The teacher might respond: “I don’t know, these spelling errors are ridiculous.” Although a different word is used, “ridiculous” is intense and suggests that the teacher is upset about the student’s spelling errors. “What seems easy for some children can be extremely complex for children with developmental delays. Instead of traditional instructional methods for learning spelling, my son may do better when taught through multi-sensory approaches.” Clustering. “What words cluster around frequent and intense words?” Perhaps, for example, a parent said about a teacher that she: “ignored important details,” “submitted an IEP with terrible errors,” “needs to stop being so lazy about accommodations.” The intense words of important, terrible, and lazy suggest that nearby words are also important: details, IEP, and accommodations. This kind of analysis may be difficult or even impossible at the time of the communication event, but an analysis of emails can add insights into determining parental concerns. Findings The findings suggest that the communication skill about which parents are most concerned is reading (49% of content). Parents also expressed concern about their children’s social communication (19%) and written communication (13%). Less discussion took place regarding listening, speech communication, and nonverbal communication. For many parents, their children’s behaviors were an important discussion point, including behavior triggers. Word frequency implies the following topics were of interest to the parents in the discussion group: How to deal with professionals (e.g., teachers, physicians), testing and diagnosis of disability, communicating with educators and the school context, Individualized Education Program (IEP) team meetings and reports, and family dynamics. In addition, parents often discussed student motivation, specific instructional strategies, physical activities, finding positive leisure and recreation experiences, advocacy for children with special needs, and communication strategies for working with educators. . Parents often discussed communication related to professionals, schools, and advocacy. Dealing with professionals. A word count showed the term was used 1464 times. Participants discussed advocacy and how to work with professionals to achieve the best for their children. This subject area was a major concern to participants and included ideas about advocacy and law. Parents talk about working with professionals, for example, and how to find professional who can provide diagnosis and treatment help. The professionals of most concern to parents—based on frequency of discussion--include teachers--964, physicians--168, and psychologists—187. Testing. A word count showed the term was used 1403. Participants discussed testing, test meaning, and statistical interpretation, which were important to parents because of the influence on diagnosis, treatment, and intervention. School interactions. A word count showed the term was used 911 times. Although participants discussed home and other context, they seemed most concerned about interactions with the school and school professionals (e.g., teacher, principals, superintendents, school counselor). Considerable negative discussion suggested opinions that school is often in a low-trust or adversarial role, and the child is often experiencing anxiety over the educational process. Some parents talk about going to home schooling or transferring schools in hopes of finding better solutions for their children. Some parents feel like educators are failing their children, and the parents are responsible for educating their children: “NONE of us should have to do the school's job for them. But sadly, we all have to. And some schools require more work than others.” Clearly, school interactions create high stress for many parents and their children. Individualized Education Program (IEP). A word count showed the term was used 425 times. The participants discussed how to obtain an IEP meeting, approach the IEP team, and communicate in the IEP team meeting, for example. Anxiety. A word count showed the term was used 371 times. Participants discussed their child’s anxiety in home, school, and other contexts. This discussion was considered only when it included a discussion of communication skills or strategies. Group members also discussed the family stresses of families who have children with disabilities. Explanations for the high stress levels included having premature children, divorce, single parenting, an extended family that lacked tolerance regarding the child’s disability, the complication of one of the parents having a disability, and health and social problems associated with the child diagnosed with disability. Medication. A word count showed the term was used 302 times. Participants exchanged opinions and information about medications and their effects. Understandably, there were extensive discussions about medication, but the discussion is outside the scope of this study. Diagnosis. A word count showed the term diagnosis was used 225 times. Mroz and Letts (2008) suggested that families with children who qualify for special education services face complex challenges, which include difficulties in diagnosis and variations on the kinds of services and supports received. Participant discussion supported that finding. Parents frequently expressed concern about the definition of diagnosis of various disabilities, for example. Many parents discussed an array of frustrations, misdiagnosis, conflicting diagnosis, and other struggles during the process of obtaining a diagnosis for their child. As one mother explained, “Well, at the beginning my husband was part of the chorus that told me that our daughter was ‘fine.’ Yes, I think that he was in denial. Yes, this difference of opinion put LOTS of stress in our marriage.” One parent told a story about receiving an extensive diagnosis report from a psychologist. After spending thousands of dollars, the report was full of typing errors which showed that they had just received a report design for another child, with their child's name substituted. The name was not even substituted in all places. While it may be true that their child was similar to some other child psychologist had diagnosed, clearly there must have been key differences between the children, which warranted a different kind of report. Accommodation. A word count showed the term was used 228 times. Participants discussed accommodations, supports, interventions, and strategies for helping their children learn and adapt. The participants discussed rules and routines, for example, which help their children learn and adapt to social environments. An area of parental frustration seemed to be the lack of individualized accommodations that genuinely help the child. Stress. A word count showed the term stress was used 180 times. Participants discussed stress factors in home, recreational, and school contexts. This included stress on the child and stress caused by the child. One mother explained that her faith enabled her to get through the challenges of have a child with special needs: “These last years were so miserable and faith helped lots.” Particularly important seemed to be pressure on the child from the school context, which most often stress prompted by the behavior of the child’s teacher. This element was considered regarding how the nature of communication affected child or family stress. Parental struggles are evident: “And we all make heart-breaking choices each and every day regarding the balance of work, family, home life, and relationships. Each choice has repercussions. Baxter, Cummins, and Yiolitis (2000) suggested, for example, that stress caused by the presence of a child with an intellectual disability can create a general stress affecting the family. As one might expect with any online support group, the emails seemed to serve an array of purposes. The online discussion seemed consistent with research on other support groups. Babinski, Jones, and DeWert (2001), for example, analyzed emails in an online support group for new teachers and found that the content reflected 5 categories, including fostering a sense of community (34.8%) or providing advice (21.3%), sharing knowledge (20.1%), relating a personal experience with the issue (16.0%), and encouraging reflection (7.9%). Respondents posted several types of emails:
· Seeking or offering validation or encouragement. Parents often give supporting comments to each other. “And you are doing a fabulous job.” “Hugs, and wishes for a good resolution to this extremely painful episode.
General topics of discussion included an array of subjects. Participants discussed personal and academic topics. When talking about academics, for example, parent most frequently talked about reading, writing, and mathematics. In looking for discussion of research-based interventions to improve communication skills, relatively little discussion took place. Content The content analyzed for this study included three general subject areas: Family, school, and IEP. Family. These postings talked about the effect of the child on family dynamics, denial by family members, the problems of having family members with the same exceptionalities as the child. Many of these family members have significant stress caused by dealing with their children’s behavior and emotional disorders. As one parent explained: “I do want to mention that divorce rates *are* higher amongst families of children with disabilities, and everyone acknowledges the additional stress that these diagnoses place on family relationships.” There were discussion of various parenting skills and strategies. Parents talked about the importance of shaping child behavior while being respectful. There appeared to be many concerns about communicating in a way that does not add pressure to the child. School. These postings focused on the family and child communication with educators, including school administrators and teachers. As one parent explained: “I want to pull him. But all the "specialist" say that sends a bad message. But what about the message he is getting that school is a scary place.” Many parents expressed doubts about school, “If my heart says one thing and all the specialists say another, I follow my heart. Or, to be honest, I learned to follow my heart. For a couple of years I followed the advice of child's teachers, but I have come to regret it. The specialists just don't know my kid as well as I do.” Individualized Education Plan (IEP). These postings focused on how to approach the IEP team meetings for the best results for the child. Postings strictly about test results and diagnosis were excluded from analysis. The frequency of words suggests the order of importance of discussion topics. Word frequency suggests the following topics were of interest to the parents in the discussion group: how to deal with professionals (e.g., teachers, physicians), testing and diagnosis of disability, communicating with educators and the school context, Individualized Education Program (IEP) team meetings and reports, and family dynamics. These meetings determine the nature of services the child will receive and report on yearly progress toward goals. In addition, parents often discussed student motivation, specific instructional strategies, physical activities, finding positive leisure and recreation experiences, advocacy for children with special needs, and communication strategies for working with educators. The findings suggest that parents are concerned about communication with educators focused on the Individualized Education Plan (IEP) and classroom learning and accommodations. Of particular importance is effective communication in an IEP team meeting. A major portion of the discussion group dealt with effective communication between the parent and the professional, particularly the educator. In this case, 23% of the postings about communication were about how to communicate more effectively with educators about the Individualized Education Program (IEP). This discussion focused on the Individualized Education Plan meeting, ensuring appropriate accommodations for student learning, and the contents of the resulting report. An additional 15% of the postings about communication were about communicating with the classroom teacher. In some cases the parents talk about wonderful and caring teachers who have a major positive influence on their children. In other cases, the educators fail to meet the children’s needs or the parent’s expectations. Disheartening talk about having an excellent teacher followed by a child’s regression under a problem teacher show the delicate needs of some children who qualify for special education services. Discussion As educators seek to understand student needs, there is much to be learned from parental perceptions. A content analysis was conducted of 1718 emails from an online discussion support group for parents of children who have been diagnosed as eligible for special education services. The findings suggest that the communication skill about which parents are most concerned is reading (49% of the communication discussion). Parents also expressed concern about their children’s written and social communication. Less emphasis was placed on discussion regarding their children’s listening, speech communication, and nonverbal communication. The nature of the interactions suggests the online support group provides important roles for many community members. Problems and conflicts seem to be discussed more than solutions and successes. Both ends of the spectrum are discussed, but the frequency of problems and conflicts is understandable. On the positive side, parents often posted comments of this kind: “Our school was very accommodating. Their solution was. . . “ or “His teacher was excellent. He made progress through. . .” Expressive Story-Telling. Story-telling is a way of conveying values, while allowing the story-teller to expressive thoughts and feelings. Story-telling is common in support groups because it allows the story-teller to make sense out of experiences. The parents also discussed the importance of story-telling for their children: “I love the concept of social stories but wonder if you could direct me to a book, article, or website that would help me to construct stories to fit situations we find ourselves in?” Seeking and Giving Advice. One area of conflict appears to be denial over the child’s diagnosis. While the mother struggles with figuring out how to adapt to the child’s behavior and emotional disorders, the father, family members, and friends often deny that anything is wrong. Postings suggest that the mother is often blamed for being an alarmist or the cause of the problem with the child. Parents talked about motivation and pros and cons of using rewards. Other topics including seeing financial aid for their children’s education. Seeking or Offering Validation or Encouragement. In one subject line, for example, a mother wrote “Need validation here.” Being evicted from her apartment and immersed in family conflict, she reached out to group member to tell her she is a good parent. Seeking or Suggesting Information or Resources, Such As The Internet, A Book, Or Qualified Professional. Participants talked about their personal knowledge, books, websites, and other sources of information. By way of example of the explicit type of information, one parent wrote this about the process of accepting that a child has a disability: “"Four tasks that the parents must master in the situation are griefwork, acknowledgement of their failure to deliver a "normal" child, the resumption and continuation of the parental attachment after hope is given for the infant's survival, and development of an understanding and acceptance of the infant's difference from other children. The father's needs have not received as much attention as those of the mother, but are no less important. Fathers generally have fewer opportunities to help their child directly or to actively participate in the care of the child. As a result, fathers have fewer opportunities to deal with the loss and may have some difficulty appreciating the time and energy involved in the care of the child (Whaley & Wong, 1982)." Sharing Celebrations and Telling Success Stories For Hope. These parents are often seeking new information from other members, particularly regarding medication, treatment, and strategies that will help their children. One parent told her child’s psychologist about a treatment, to which he inquired if she knew anyone who had used the treatment. The mother said he did know people online who had used the treatment. Through this group, members were able to receive help for parenting with child, and at the same time, they revealed something about their concerns about their child’s communication. References Babinski, L., Jones, B., & DeWert, M. (2001). The roles of facilitators and peers in an online support community for first-year teachers. Journal of Educational & Psychological Consultation, 12(2), 151-169. Baxter, C. C., & Yiolitis, L. Parental stress attributed to family members with and without intellectual disability: A longitudinal study. Journal of Intellectual and Developmental Disability, 25(2), 105-118. Black, L. (2008, February). Deliberation, storytelling, and dialogic moments. Communication Theory (10503293), 18(1), 93-116. Bochner, A. P., Ellis, C., & Tillmann-Healy, L. M. (1997). Relationships as stories. In S. W. Duck (Ed.), Handbook of personal relationships: Theory, research, and interventions (2nd ed., pp. 107–124). Chichester, England: Wiley. Burke, Kenneth. Language as Symbolic Action. Berkley: University of California Press, 1966. Clark, L. F. (1993). Stress and the cognitive-conversational benefits of social interaction. Journal of Social and Clinical Psychology, 12, 25–55. Pennebaker, J. W. (2003). Writing about emotional experiences as a therapeutic process. In P. Salovey & A. J. Rothman (Eds.), Social psychology of health (pp. 362–368). New York: Psychology Press. Kyratzis, A. (2005, May). Language and Culture: Socialization through Personal Story-Telling Practice. Human Development (0018716X), 48(3), 146-150. Koenig Kellas, J., & Trees, A. (2006, January). Finding Meaning in Difficult Family Experiences: Sense-Making and Interaction Processes During Joint Family Storytelling. Journal of Family Communication, 6(1), 49-76. Kuster, J. (2007, May 29). Facilitating Group Therapy and Support Meetings. ASHA Leader, 12(7), 30-31. Genereux, R., & McKeough, A. (2007). Developing narrative interpretation: Structural and content analyses. British Journal of Educational Psychology, 77(4), 849-872. Mack, A. E., & Warr-Leeper, G. A. (1992). Language abilities in boys with chronic behavior disorders. Language, Speech, and Hearing Services in Schools;23 (3), 214-223. Meadan, H., Ostrosky, M. M., & Halle, J. W. (2006). "What?"; "I don't understand"; and "pardon?": Using communication breakdowns to encourage communication. Young Exceptional Children, 9(3), 2-9. Rinaldi, C. (2003). Language competence and social behavior of students with emotional or behavioral disorders. Behavioral Disorders, 29(1), 34-42. Ritzman, M. J., Sanger, D. (2007). Principals' opinions on the role of speech-language pathologists serving students with communication disorders involved in violence. Language, Speech, and Hearing Services in Schools, 38(4), 365-377. Sage, R. (2001). Supporting primary and secondary pupils with communication and behavior problems. International Journal of Language & Communication Disorders, 36, 423-428. Sanger, D., Maag, J. W., Spilker, A. (2006). Communication and behavioral considerations in planning programs for female juvenile delinquents. Journal of Correctional Education, 57(2), 108-125. Shedletsky, L. J., & Aitken, J. E. (2004). Human communication on the Internet. Boston: Allyn & Bacon/Longman. Soto, G., Harmann, E. (2006). Analysis of narratives produced by four children who use augmentative and alternative communication. Journal of Communication Disorders, 39(6), 456-480. Ye, J. (2006, April). Traditional and Online Support Networks in the Cross-Cultural Adaptation of Chinese International Students in the United States. Journal of Computer-Mediated Communication, 11(3), 863-876.
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Online Academics Mission: To advance research and education designed to improve communication and leadership among diverse learners. Editor: Joan E. Aitken, Ed.D., Professor, Park University and Professor Emerita, University of Missouri - Kansas City. This is a private website without affiliation with any institution, organization, or group. Reference listing for this page: Aitken, J. E. (2008). Family issues in special education. Kansas City, MO: OnlineAcademics.Org. Retrieved month day, year, from http://onlineacademics.org/Family
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