Children with Intellectual Inabilities - Information Booklet for Parents - Speech or Presentation Example

Children with Intellectual Inabilities Information Booklet for Parents October 2014 Table of Contents Foreword………………………………………………………………………………………......3 Abbreviations ……………………………………………………………………………………..4 Introduction………………………………………………………………………………………6 What is Intellectual Disabilities…………………………………………………………………7 Understanding Intellectual disabilities ……………………………………………………………7 What are the Causes of Intellectual Disability ………………………………………………...8 Intellectual Disabilities Signs for Parents to Look out ………………………………………..9 Steps of Action for Parents with Children with Intellectual Disabilities……………………11 Vulnerability of Intellectual Disabled Children………………………………………………12 Lack of awareness………………………………………………………………………………..13 Family resilience and stress levels……………………………………………………………….13 What are the Signs of Abuse of Intellectual Disabled Children……………………………..13 Physical abuse………………………………………………………………………………........14 Emotional abuse………………………………………………………………………………….14 Teaching intellectual Disabled Children about Sex…………………………………………..15 Benefits of Talking to These Children…………………………………………………………...15 How to Identifying Sexual Abuses ……………………………………………………………...16 Tips for Protecting Intellectual disabled Children…………………………………………...16 How can a Parent Manage Thought of Harming a Child with Intellectual Disability? …...18 How do Parents Communicates with Schools? ………………………………………………18 Intervention Strategies for parents with Intellectually Disabled Children…………………19 Stepping Stones Tripe P (SSTP) ………………………………………………………………...20 Group Stepping Stones Triple P………………………………………………………………....21 Signposts ………………………………………………………………………………………...21 Health intervention package……………………………………………………………………..22 Family therapy and support groups………………………………………………………………22 Recommended References for Parents………………………………………………………..23 Conclusion………………………………………………………………………………………24 Bibliography…………………………………………………………………………………….26 Foreword One of the many duties of this organization is to provide sufficient information to parents and guardians of children with intellectual disabilities. This is the first edition of an information booklet for parents aimed at helping them understand in depth about the needs of children with intellectual disabilities, their care and support available to their children. It is hoped that the booklet will complement many other works by other researchers and organizations in helping parents make informed decisions concerning their children with intellectual disabilities I believe that is this booklet is a helpful source of information and will add value to you. Name Position October 2014 Abbreviations ASD Autism Spectrum Disorder SSTP Stepping Stones Tripe P Introduction Every child regardless of their mental status has a right to good parental care for them to feel safe to learn and grow into adulthood with confidence. Children with disabilities are more vulnerable compared to physical and mental fit colleagues. It is therefore important for parents and other care providers of children with mental disabilities to abreast themselves with information and strategies about these challenge to protect these children. This booklet is valuable to parents with mental disabled children as it provides them with essential information to guide them about management of such children. These children have a life to live after their post school and therefore they require adequate guidance on various aspects concerning education, employment and integration in the larger society among many others. The booklet provides information for parents explaining what intellectual disability is (aimed group: parents whose child has been diagnosed with intellectual disabilities). The book incorporated evidence based research information relating to parents with intellectual disabled children. This information is packaged well to enhance understanding. Parents with intellectual disabled children will benefit greatly from this booklet which provides in depth analysis of various research studies pertaining to intellectual disability and many other interventions, tips and recommendations to help parents cope with such children and manage their stress. For quite long period, persons with disability have faced discrimination experienced ridicules, and rejections something that has had negative implications on their lives. However, within increased sensitization and creation of awareness about intellectual disabilities, strides have been realized as such individuals are recognized by the society. Integration of these people in society has enabled some of them to live independently and become productive. What is Intellectual Disabilities Understanding Intellectual disabilities Intellectual ability is a condition that involves impairment of general mental abilities that particularly affects three major areas of adaptive functioning. The ability of an individual to cope with daily activities is made possible through adaptive functioning. One of the areas affected in the adaptive functions is conceptual domain that includes, memory, skills in language, knowledge, writing, reasoning as well as performing mathematical tasks. The second area is social domain that is responsible for social judgment, socialization, interpersonal communication and the ability to make and maintain friendships. The last domain is the one that includes recreation, personal care, work tasks, money management and job responsibilities. It is apparent that people with intellectual disabilities may not lead ordinary lives because they face challenges with their adaptive functioning. The condition severity usually determines the extend an individual with intellectual inability executes their daily tasks. Some people with intellectually disabilities nevertheless, lead normal lives as adults even though they sometimes require minimal support from the members of the family and society. In most cases, however, most of these individuals require constant care because they face challenges in performing their daily tasks making them to spend their lives with parents or guardians (Chong, Goh, Tang, Chan, & Choo, 2012). Intellectual ability makes a child to grow and develop slowly and even slower their learning process compared to children of their same age (CDC, 2013). They may also not be able to learn to speak, dress, walk, or eat by themselves and could face trouble learning in schools. What are the Causes of Intellectual Disability Many reasons contribute as causes of mental disabilities among children. The problem may start any time even before the child is born to the time the child is 18 years (CDC, 2013). Other causes may include diseases, injuries or a condition / problem in the brain (CDC, 2013). Some of the causes of intellectual disabilities in some of the children is not even known as researchers continue to intensify their studies in the area. Most common known causes of this problem that happen before birth include, fragile X syndrome, fetal alcohol syndrome, down syndrome, genetic conditions, infections and birth defects (Chong, Goh, Tang, Chan, & Choo, 2012). Others happens while a child is born or soon after the birth while others occur when a child is old such as stroke, serious head injury or certain infections (CDC, 2013). Intellectual Disabilities Signs for Parents to Look out Parents have a duty to provide frequent support to the children. To know the behavior of your child is critical and being able to identify some of the signs and symptoms that relates to these intellectual disabilities is important for parents (Chong, Goh, Tang, Chan, & Choo, 2012). In a more severe degree of such disability, manifestation of intellectual inability signs manifests early. Nevertheless, telling the age at which the child will be affected later in life might be still hard. One of the signs is when a child delays to crawl, sit up or walk in comparison to other children (CDC, 2013). This is something that the parent should be concerned and if possible seek for professional advice. It is however, sometimes normal for some children to delay in doing such activities (CDC, 2013). The child may also learn to talk later and may have a problem /trouble speaking. The child may as well find it difficult in remembering things. Memory lapses in a child are therefore a sign that the child may be vulnerable to an intellectual ability (CDC, 2013). The child may as well have a problem understanding and embracing social rules. A society exists based on rules and norms that act as a sense of identity. In a situation that a child exemplifies weird behaviors contrary to the expectation of the society, then it might be a sign of intellectual problem as well (CDC, 2013). The child as well may not be able to understand and see the consequences of their actions. Other signs are experience of trouble in solving common problems. Such a child may not be in position to make any decisions in situations that require use of common sense (CDC, 2013). Steps of Action for Parents with Children with Intellectual Disabilities Parents need not to hesitate once they realize that their children have signs and symptoms of an intellectual disability (CDC, 2013). Many of the problems if early detected the hopes of managing and containing the problem increases compared to late detection (Radcliffev &Turk, 2008). The first step of action upon realizing such a problem is to visit the child’s doctor or nurse for further diagnosis (CDC, 2013). It is important to take the child to a professional doctor or health facility that has the necessary skills and equipment to diagnose the child well. In case the doctor feels that the child has a problem, take the child to the developmental pediatrician or other specialist for further diagnosis. It is also important that the parent conduct the local early intervention agency if the child is below three years or a public school the child attends if the child is over three years (CDC, 2013). Schools are some of the parties that will vanish pedestrians or the specialist with more information pertaining to the behaviors and the health of the child. For instance, the teachers of the child at school will provide vital information pertaining to the learning progress of the child as well as social behaviors among many others that will help in providing more details to whether the child is suffering from such a condition or not (CDC, 2013). It is also important to seek information from various organizations through internet or through personal contact. Identifying the right website with credible information is also critical to ensure that information received is credible (Berk, Berk, Dodd, Kelly, Cvetkovski & Jorm, 2013). Vulnerability of Intellectual Disabled Children Children with intellectual disability are more vulnerable as they lack good understanding of social relationships, protective behaviors, personal boundaries, sexual awareness and what abuses entails. Such children because of this slow understanding, low perception, and self-esteem of their abilities other members of the society can easily abuse them (CDC, 2013). Parents must therefore, provide enough support to avoid abuse of children. Parents need to understand that they can contribute in making these children more vulnerable to abuse and neglect. Therefore, they need to take appropriate steps to help protect these children. Some of the reasons for the increased vulnerability of children with intellectual disabilities include; Lack of awareness Parents may not be aware of how to manage their children situations. Therefore, they may end up abusing their children by adopting unacceptable behaviors. Negative community attitudes in respect to intellectual disability may contribute to abusive and neglect. Parents may fail to recognize these children hence neglecting them (Berk, Berk, Dodd, Kelly, Cvetkovski & Jorm, 2013). Furthermore, cultural beliefs and norms may as well be an impediment for parents to nurture and protect these children (CDC, 2013). Family resilience and stress levels Raising a child with intellectual disability is stressful to the parents. It is something that may affect the psychology of the parent as well as have economic impact on the parents triggering stress. Some of parents therefore, may fail to provide better care because of these demands that may be unbearable to them hence exposing these children (CDC, 2013). Parents and children with such disability may be socially isolated something that may reduce their support networks impacting severely on the life of such children (CDC, 2013). What are the Signs of Abuse of Intellectual Disabled Children Parents through their own observation can identify intellectual disabled children under abuse. The abuse might be physical, emotional, and sexual or neglect (CDC, 2013). These abuses affect the live of the child, education and even the work or employment potentiality of the child. Parents must therefore ensure they look out on these abuses as a way of enhancing the lives of the children. Physical abuse Such children experience physical abuse through beating, punching, biting, shaking, burning and harming of the body. Other forms of physical abuses include restraining a child in poor environment/unsafe way, inappropriate medication to restrict child action, inappropriate discipline such as removing essential equipment and denying food (CDC, 2013). A parent may determine a physically abused child through signs such as bite marks, burns, bruises, and unexplained fractures. Others include worry of physical contact, frightened of certain caregivers, timid or overly withdrawn. Emotional abuse Emotional abuses on the other hand affect the self-esteem of the child making them feel inadequate or worthless. These abuses manifest in children with intellectual disabilities through their behaviors that may be antisocial behaviors, aggression, low self-esteem/ destructive behaviors among many others (CDC, 2013), According to CDC (2013), parents play a crucial role in increasing the self-esteem and confident on children with intellectual disabilities through care, love and affirmation. Parents need to be closer to their children to identify any behavior changes to respond promptly to avoid negative consequences on the child. For example, parents need to comment positively about the capabilities of these children, affirm them and love them as the other children. Teaching intellectual Disabled Children about Sex Parents remain the primary sex educators of their children. However, many are afraid of discussing issues of sexual matters with their intellectual disabled children (Advocates for Youth, 2014). Intellectual disabled children face huge threat in terms of abuse from the members of the society and they must be aware of their rights when it comes to aspects of sexuality (Advocates for Youth, 2014). They face abuse such as rape, and even risks of contraction of sexually transmitted diseases through unaware engagement in sexual behaviors. Many parents are reluctant to share or talk with their children on sexual matters because they think that this will encourage them to experiment, they do not know the best strategies to handle the questions and feel that the children know much already or too little (Advocates for Youth, 2014). While others feel that, their children are target of sexual abuse or may develop freak in expressing themselves on sexual feelings. Benefits of Talking to These Children Various benefits exist when parents talk to these children. One is that, it enables these children to appreciate their sex and can as well be able to report to their parents in case of abuses such as rape and indecent touching from the members of the society (Advocates for Youth, 2014). They help develop life skills. They require appropriate social skills to know how to make friends and to avoid feelings of loneliness. They require enough sexual knowledge to make wise decisions and to avoid sexual health risks (Advocates for Youth, 2014). How to Identifying Sexual Abuses Parents can identify any sexual abuses on their children by looking at various signs such as injuries on private areas of the bodies such as genitals, inner thighs, breasts and buttocks. Others are discomfort when visiting a toilet, sexual transmitted infections, inflammations, and infections in genitals, fear when bathed, excess or explicit sexual behaviors and knowledge among many others (CDC, 21013). Tips for Protecting Intellectual disabled Children It is important to keep in touch with various service provides and vanish them with important information pertaining to child developmental level, their needs and behaviors. This ensures that they provide appropriate advice and assistance to see that children receive necessary support at the right time (Hudson, Matthews, Gavidia-Payne, Cameron, Mildon, Radler & Nankervis, 2003). For instance, they will help the parent to identify the best schools for their children and as well provide avenues for the children to get a job for self-sustainability. Parents must as well endeavor to know people that work with children and observe how they interact to avoid child abuse and molestation. Parents have a duty to enquire more information from these providers on their roles in supervision and monitoring their children to ensure that they live safer lives. Parents must also keep in touch with these service providers such as schools and employers and should ask for daily routines and reports of the child activities to ensure that their children are living positively by understanding their progress (Lennox, Ware, Carrington, O’Callaghan, Williams, McPherson & Bain, 2012). Other issues that parents need to ask are about child safe environmental policies and other procedures in place to protect their children (CDC, 2013). Parents should also use checklists for parents to assist them in selecting an appropriate service provider. Parents should teach their children about their bodies as well on the personal and relationship boundaries. They require training on saying ‘no’ when are scared or made uncomfortable by someone (CDC, 2013). They require teaching on how to understand and identify people they can trust and go to when they are unsafe. Parents must always beware of whereabouts of their children and their company to avoid abuse. How can a Parent Manage Thought of Harming a Child with Intellectual Disability? Providing care for intellectual disability children can be difficult task for parents because of the extra pressures. These pressures range from health related worries, increased physical demands, increased expenses, strain on relationships, social isolation, greater reliance on specialist supports and limited time for relaxation (CDC, 2013). Stress and anxiety are usually normal in the situation but they may build up triggering a parent to harm a child. It is therefore necessary that whenever a parent reaches a point that it becomes unbearable to control these worries they seek appropriate assistance. When a parent is unusually tired and low, cries more than usual, feels loneliness and that no one understands, afraid of being alone with the child, anger outbursts towards the child not controllable, use of alcohol or drugs to feel better, and having already done something that intends to harm the child, they need to seek help (CDC, 2013). How do Parents Communicates with Schools? It is prudent that parents provide appropriate information about the child’s special education needs to assist the school to meet this particular needs. If the child has problems in school because of the intellectual disability, the teacher should be aware of this (Lennox, Ware, Carrington, O’Callaghan, Williams, McPherson & Bain, 2012). This help teacher to understand an upset child only if the teachers knows where the problem is. Parents should as learn more from their child and communicate to build and maintain trusts and honesty. In case the parent still has concern about the child, then arranging to see the teacher becomes the best option. Intervention Strategies for parents with Intellectually Disabled Children According to Roux, Sofronoff & Sanders (2013), use of parent training methods can help manage challenging behaviours in children with intellectual disabilities. Parents’ resources need strengthening to help them cope with the demands of raising a child with a disability achieved by introducing alternative strategies to enhance positive perceptions of the parent on the child functioning. The programs should be flexible to be able to meet the needs of the children with various intellectual abilities. It therefore becomes essential to consider or factor in the population, goals of parents and family experiences (Roux, Sofronoff & Sanders, 2013). These programs as well vary in terms of their complexity including, intensity, strength and scope of the intervention, target population, setting in which it takes place, the person delivering the intervention, and the cost of the intervention (Johnson, Douglas, Bigby & Iacono, 2012). It is important therefore for the program to be easy to access with limited demands in terms of travel and time. One of the best strategy or program is group administered parenting program that is suited for parents that have children with varying levels of disabilities. It is cost effective and is easily accessible by many families or parents compared to individual interventions. Stepping Stones Tripe P (SSTP) Stepping Stones Tripe P (SSTP) is one of the family intervention program based on social learning principles designed for parents that have children with disabilities at a risk of developing behavior problems (Johnson, Douglas, Bigby & Iacono, 2012). This program helps parents to come up with routines to manage their children behavioral problems and developmental issues to help them increase their parental confidence. The program is effective as it creates a warm environment between the child and the parent and is effective for children intellectual and physical disabilities with disruptive behaviors. Evidence indicates that the method or program helps in improving significantly the behavior of the child, parenting styles and parent satisfaction in families that have children suffering from ASD (Whittingham et al., 2009). Group Stepping Stones Triple P Group Stepping Stones Triple P is also essential in improving parenting skills and the wellbeing of the child (Bodenmann, Cina, Ledermann & Sanders, 2008). This program is less intensive intervention, as parents are required to attend fewer sessions around six of them. They can as well receive through three brief telephone consultants instead face to face practice sessions (Roux, Sofronoff & Sanders, 2013). Signposts Another recommended interventions systems that parents can use is signposts. This is a flexible way of parents and families of children that have intellectual disabilities and challenge behaviors to learn how to manage their children. The signpost materials has or consists of eight information booklets, a videotape and a work book for the parents as well as a number of instructional manuals for therapists. Parents learn through various ways including telephone support, group support and self-directed modes. By using these signposts in training parents, it reduces their level of stress, makes them feel efficacious about child behavior management, and improves their own and children behaviour (Hudson, Matthews, Gavidia-Payne, Cameron, Mildon, Radler &Nankervis, 2003). Health intervention package According to Lennox, Nicholas; Ware, Robert; Carrington, Suzanne; O’ Callaghan, Michael; Williams, Gail; McPherson, Lyn; Bain, Chris (2012), over half a million of Australians suffer from intellectual disabilities. Many of them suffer from unrecognized disease, face challenges in accessing health screening and promotion that contributes to premature deaths. This therefore, means that parents as well as other stakeholders have a responsibility to ensure that they assist these groups of people. To ensure that adolescents suffering from intellectual disabilities access to health, then health intervention package is essential. The package should augment communication, improve documentation of their health encounters and improve access, quality of care (Lennox, Rey-Conde & Faint, 2008). One strategy is to ensure that they identify themselves with personalities in promotional study materials, through direct contacts with their families, and close monitoring of implementation of educational interventions. Family therapy and support groups Family therapy and support groups provide an important avenue for parents to learn and to cope with various emotions (Hudson, Matthews, Gavidia-Payne, Cameron, Mildon, Radler &Nankervis, 2003). Most of the parents experience frustration, fell guilt, uncertainty, disappointment, sadness, worry and grief because of their children intellectual status. Through support groups, access to accurate information and knowledge is made easy hence a powerful coping tool. Families with children with intellectual disabilities benefit from such educational programs making them more informed and therefore better to cope up with the situation minimizing their level of stress. Furthermore, these programs provide parents with opportunities for families to support each other. Recommended References for Parents Dealing with a child with this problem and especially those abused can be stressful. Your child like any other has the right to care, support and protection. It is important that parents understand the needs of these children and provide them with what they want to promote their lives. They have a right to education and a decent live. In case of an abuse, even if the child has not indicated to you, it is important to seek for assistance from various stakeholders. These stakeholders includes government departments dealing with issues of child and disabilities, schools, employers, and other agencies such as parent helpline among many others. One of them is Child Abuse Report Line that operates 24 hours on daily basis (CDC, 2013). Workers provide advice on issues that relates to children with intellectual abilities that can be important for parents. Others include, disability SA on stop point of call in South Australia that provides information to people living with disabilities, parent helpline is another one that provides advice on child health and parenting of children below 12 years (Johnson, Douglas, Bigby & Iacono, 2012). Another one is Lifeline that offers 24 hours services in suicide prevention, mental health support and crisis support services. The parents can access these organizations in person, through /over phone or through their websites. Others recommended resources for parents to access information on management of children with intellectual disabilities include: National Dissemination Center for Children with Disabilities, website at www.nichcyv.org/states.htm Center for Disease Control and Prevention (CDC) , Website link on families information at www.cdc.gov/ncbddd Leslie, W. ed. (2007). The Facts of Life...and More Sexuality and Intimacy for People with Intellectual Disabilities, Brookes Publishing Co., ISBN: 1557667144 Schwier, K., Hingsburger, D., & DavE, h. (2000). Sexuality: Your Sons and Daughters With Intellectual Disabilities Brookes Publishing Co., ISBN: 1557664285 Government of New South Wales Department of Education and Child Development Department for communities and social inclusion Conclusion Parents have a greater responsibility in ensuring safety of their children with intellectual disabilities. They are required to understand the signs, symptoms, and causes of these disabilities. They as well must understand the necessary course of action when they suspect their children to be suffering from these disabilities. Children with intellectual abilities require protection and nurturing to learn and develop social skills. They can as well find employment opportunities and lead a decent life as independent people in the society. The booklet will therefore be essential as it covers on different topics on the responsibilities of parents in supporting these children. I hope that any parent that uses this information will experience tremendous changes in management of these children and will reduce anxiety and stress. Bibliography Advocates for Youth. (2014). Developmental and intellectual disabilities. Retrieved from http://www.advocatesforyouth.org/index.php?option=com_content&task=view&id=862 &Itemid=64 Berk, L., Berk, M., Dodd, S., Kelly, C., Cvetkovski, S., & Jorm, A. (2013). Evaluation of the acceptability and usefulness of an information website for caregivers of people with bipolar disorder. BMC Medicine, 11(1):1-13. Bodenmann, G., Cina, A., Ledermann, T., & Sanders, M. R. (2008). The efficacy of the triple P- positive parenting program in improving parenting and child behavior: A comparison with two other treatment conditions. Behaviour Research and Therapy, 46, 411–427. Centers for Disease Control and Prevention, (CDC). (2013). Intellectual Disability: Fact sheet. Retrieved from http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/IntellectualDisability.pdf Chong, W., Goh, W., Tang, H., Chan, W., & Choo, S. (2012). Service Practice Evaluation of the Early Intervention Programs for Infants and Young Children in Singapore. Children's Health Care, 41(4): 281-301. DECD.SA. Gov. (2014). Protecting children and young people with disability: A booklet for parents and carers. Retrieved from http://www.decd.sa.gov.au/docs/documents/1/ProtectChildDisabBooklet.pdf Hudson, A., Matthews, J., Gavidia-Payne, S., Cameron, C., Mildon, R., Radler, G., & Nankervis, K. (2003). Evaluation of an intervention system for parents of children with intellectual disability and challenging behaviour. Journal of Intellectual Disability Research, 47(4/5): 238-249. 1 Johnson, H., Douglas, J., Bigby, C., & Iacono, T. (2012). A model of processes that underpin positive relationships for adults with severe intellectual disability. Journal of Intellectual & Developmental Disability, 37(4):324-336. Lennox, N., Ware, R., Carrington, S., O’ Callaghan, M., Williams, G., McPherson, L., & Bain, C. (2012). Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial. BMC Public Health, 12(1): 750-761. Lennox, N., Rey-Conde, T., & Faint, S. (2008). A Pilot of Interventions to Improve Health Care in Adolescents with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 21(5): 484-489. Radcliffe, J., &Turk, V. (2008). Distress in children with learning disabilities at a respite unit: perspectives on their experiences. British Journal of Learning Disabilities, 36(2):91- 101. Roux, G., Sofronoff, K., & Sanders, M. (2013). A Randomized Controlled Trial of Group Stepping Stones Triple P: A Mixed-Disability Trial. Family Process, 52(3): 411-424. Whittingham, K., Sofronoff, K., Sheffield, J., & Sanders, M. R. (2009). Stepping Stones Triple P: An RCT of a parenting program with parents of a child diagnosed with an Autism Spectrum Disorder. Journal of Abnormal Child Psychology, 37, 469–48 Read More