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Intellectual Disabilities

Intellectual disabilities

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Mental Retardation and Down Syndrome

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  • 1.IntellectualDisabilities

2. What Causes Intellectual Disabilities? Theres a problem with the babys genes, which are in everycell and determine how the body will develop. (a babymight receive genes that are abnormal or the genes mightchange while the baby is developing.) Theres a problem during the pregnancy. Sometimes, themother might get an illness or infection that can harm thebaby. Taking certain medicines while pregnant can causeproblems for the baby. Drinking alcohol or taking illegaldrugs can also damage a babys developing brain. During childbirth, if the baby doesnt get enough oxygen. Premature birth. After birth, the baby gets a serious brain infection. Any time in life, a serious head injury can hurt the brainand cause intellectual disabilities. Some of thesedisabilities are temporary and others can be permanent. 3. Mental Retardation A term that was once commonly used to describesomeone who learns and develops more slowly thanothers. Someone who has this kind of problem will havetrouble learning and functioning in everyday life. Thisperson could be 10 years old, but might not talk orwrite as well as a typical 10-year-old. He or she is alsousually slower to learn other skills, like how to getdressed or how to act around other people. 4. Characteristics of Children with Mental Retardation Many children with mild retardation are not identified until they enter school and sometimes not until the standard 1 or 2 level, when more difficult academic work is required. Most students with mild mental retardation master academic skills up to about the form 4 or 5 level and are able to learn job skills well enough to support themselves independently or semi- independently. Some adults who have been identified with mild mental retardation develop excellent social and communication skills and once they leave school are no longer recognized as having a disability. 5. Characteristics of Children with Mental Retardation Children with moderate retardation show significant delays in development during their preschool years. As they grow older, discrepancies in overall intellectual development and adaptive functioning generally grow wider between these children and children their ages without disabilities. People with moderate mental retardation are more likely to have health and behavior problems than are individuals with mild retardation. 6. Characteristics of Children with Mental Retardation Individuals with severe and profound mental retardation are almost always identified at birth or shortly afterward. Most of these infants have significant central nervous system damage, and many have additional disabilities and/or health conditions. Although IQ scores can serve as the basis for differentiating severe and profound retardation from one another, the difference is primarily one of functional impairment. 7. Cognitive Functioning Deficits in cognitive functioning and learning styles characteristic of individuals with mental retardation include poor memory, slow learning rates, attention problems, difficulty generalizing what they have learned, and lack of motivation. 8. Memory Students with mental retardation have difficulty remembering information. Aswould be expected, the more severe the cognitive impairment, the greater thedeficits in memory. In particular, research has found that students with mentalretardation have trouble retaining information in short-term memory(Bray, Fletcher, & Turner, 1997). Short-term memory, or working memory, is theability to recall and use information that was encountered just a few seconds toa couple of hours earlierfor example, remembering a specific sequence of jobtasks an employer stated just a few minutes earlier. Merrill (1990) reports thatstudents with mental retardation require more time than their nondisabledpeers to automatically recall information and therefore have more difficultyhandling larger amounts of cognitive information at one time. Earlyresearchers suggested that once persons with mental retardation learned aspecific item of information sufficiently to commit it to long-term memoryinformation recalled after a period of days or weeksthey retained thatinformation about as well as persons without retardation (Belmont, 1966;Ellis, 1963 9. Memory Continued More recent research on memory abilities of persons with mental retardation has focused on teaching metacognitive or executive control strategies, such as rehearsing and organizing information into related sets, which many children without disabilities learn to do naturally (Bebko & Luhaorg, 1998). Students with mental retardation do not tend to use such strategies spontaneously but can be taught to do so with improved performance on memory-related and problem-solving tasks as an outcome of such strategy instruction (Hughes & Rusch, 1989; Merrill, 1990). 10. Learning Rate The rate at which individuals with mental retardation acquire new knowledge and skills is well below that of typically developing children. A frequently used measure of learning rate is trials to criterionthe number of practice or instructional trials needed before a student can respond correctly without prompts or assistance. For example, while just 2 or 3 trials with feedback may be required for a typically developing child to learn to discriminate between two geometric forms, a child with mental retardation may need 20 to 30 or more trials to learn the same discrimination. 11. Learning Rate Continued Because students with mental retardation learn more slowly, some educators have assumed that instruction should be slowed down to match their lower rate of learning. Research has shown, however, that students with mental retardation benefit from opportunities to learn to go fast (Miller, Hall, & Heward, 1995). 12. Attention The ability to attend to critical features of a task (e.g., tothe outline of geometric shapes instead of dimensions suchas their color or position on the page) is a characteristic ofefficient learners. Students with mental retardation oftenhave trouble attending to relevant features of a learningtask and instead may focus on distracting irrelevantstimuli. In addition, individuals with mental retardationoften have difficulty sustaining attention to learning tasks(Zeaman & House, 1979). These attention problemscompound and contribute to a students difficulties inacquiring, remembering, and generalizing new knowledgeand skills. 13. Attention Continued Effective instructional design for students with mental retardation must systematically control for the presence and saliency of critical stimulus dimensions as well as the presence and effects of distracting stimuli. After initially directing a students attention to the most relevant feature of a simplified task and reinforcing correct responses, the complexity and difficulty of the task can gradually be increased. A students selective and sustained attention to relevant stimuli will improve as he experiences success for doing so. 14. Generalization of Learning Students with disabilities, especially those with mentalretardation, often have trouble using their new knowledge andskills in settings or situations that differ from the context inwhich they first learned those skills. Such transfer orgeneralization of learning occurs without explicit programmingfor many children without disabilities but may not be evident instudents with mental retardation without specific programmingto facilitate it. Researchers and educators are no longer satisfiedby demonstrations that individuals with mental retardation caninitially acquire new knowledge or skills. One of the mostimportant and challenging areas of contemporary research inspecial education is the search for strategies and tactics forpromoting the generalization and maintenance of learning byindividuals with mental retardation. Some of the findings of thatresearch are described later in this chapter and throughout thistext. 15. Motivation Some students with mental retardation exhibit an apparentlack of interest in learning or problem-solving tasks(Switzky, 1997). Some individuals with mental retardationdevelop learned helplessness, a condition in which aperson who has experienced repeated failure comes toexpect failure regardless of his or her efforts. In an attemptto minimize or offset failure, the person may set extremelylow expectations for himself and not appear to try veryhard. When faced with a difficult task or problem, someindividuals with mental retardation may quickly give upand turn to or wait for others to help them. Some acquire aproblem-solving approach called outer-directedness, inwhich they seem to distrust their own responses tosituations and rely on others for assistance and solutions. 16. Motivation Continued Rather than an inherent characteristic of mentalretardation, the apparent lack of motivation may be theproduct of frequent failure and prompt dependencyacquired as the result of other peoples doing things forthem. After successful experiences, individuals with mentalretardation do not differ from persons without mentalretardation on measures of outer-directedness (Bybee &Zigler, 1998). The current emphasis on teaching self-determination skills to students with mental retardation iscritical in helping them to become self-reliant problemsolvers who act upon their world rather than passively waitto be acted upon (Wehmeyer, Martin, & Sands, 1998). 17. Self-Care and Daily Living Skills Individuals with mental retardation who require extensive supports must often be taught basic self-care skills such as dressing, eating, and hygiene. Direct instruction and environmental supports such as added prompts and simplified routines are necessary to ensure that deficits in these adaptive areas do not come to seriously limit ones quality of life. Most children with milder forms of mental retardation learn how to take care of their basic needs, but they often require training in self-management skills to achieve the levels of performance necessary for eventual independent living. 18. Social Development Making and sustaining friendships and personalrelationships present significant challenges for manypersons with mental retardation. Limited cognitiveprocessing skills, poor language development, and unusualor inappropriate behaviors can seriously impedeinteracting with others. It is difficult at best for someonewho is not a professional educator or staff person to wantto spend the time necessary to get to know a person whostands too close, interrupts frequently, does not maintaineye contact, and strays from the conversational topic.Teaching students with mental retardation appropriatesocial and interpersonal skills is one of the most importantfunctions of special education. 19. Behavioral Excesses and Challenging Behavior Students with mental retardation are more likely to exhibit behaviorproblems than are children without disabilities. Difficulties acceptingcriticism, limited self-control, and bizarre and inappropriate behaviorssuch as aggression or self-injury are often observed in children withmental retardation. Some of the genetic syndromes associated withmental retardation tend to include abnormal behavior (e.g., childrenwith Prader-Willi syndrome often engage in self-injurious or obsessive-compulsive behavior). In general, the more severe the retardation, thehigher the incidence of behavior problems. Individuals with mentalretardation and psychiatric conditions requiring mental healthsupports are known as dual diagnosis cases. Data from one reportshowed that approximately 10% of all persons with mental retardationserved by the state of California were dually diagnosed (Borthwick-Duffy & Eyman, 1990). Although there are comprehensive guidelinesavailable for treating psychiatric and behavioral problems of personswith mental retardation (Rush & Francis, 2000), much more research isneeded on how best to support this population. 20. Positive Attributes Descriptions of the intellectual functioning and adaptive behavior of individuals with mental retardation focus on limitations and deficits and paint a picture of a monolithic group of people whose most important characteristics revolve around the absence of desirable traits. But individuals with mental retardation are a huge and disparate group composed of people with highly individual personalities (Smith & Mitchell, 2001b). Many children and adults with mental retardation display tenacity and curiosity in learning, get along well with others, and are positive influences on those around them (Reiss & Reiss, 2004; Smith, 2000). 21. Down Syndrome Down syndrome (DS), also called Trisomy 21, is a conditionin which extra genetic material causes delays in the way achild develops, both mentally and physically. The physical features and medical problems associatedwith Down syndrome can vary widely from child to child.While some kids with DS need a lot of medicalattention, others lead healthy lives. Though Down syndrome cant be prevented, it can bedetected before a child is born. The health problems thatmay go along with DS can be treated, and many resourcesare available to help kids and their families who are livingwith the condition. 22. What Causes It? Normally, at the time of conception a baby inherits geneticinformation from its parents in the form of 46chromosomes: 23 from the mother and 23 from the father.In most cases of Down syndrome, a child gets an extrachromosome 21 for a total of 47 chromosomes instead of46. Its this extra genetic material that causes the physicalfeatures and developmental delays associated with DS. Although no one knows for sure why DS occurs and theresno way to prevent the chromosomal error that causesit, scientists do know that women age 35 and older have asignificantly higher risk of having a child with thecondition. At age 30, for example, a woman has about a 1 in1,000 chance of conceiving a child with DS. Those oddsincrease to about 1 in 400 by age 35. By 40 the risk rises toabout 1 in 100. 23. Physical Features of Persons with Down Sydrome Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue. 24. How Down Syndrome Affects Kids Low muscle tone (called hypotonia) is also characteristic of childrenwith DS, and babies in particular may seem especially "floppy." Thoughthis can and often does improve over time, most children with DStypically reach developmental milestones like sittingup, crawling, and walking later than other kids. At birth, kids with DS are usually of average size, but they tend to growat a slower rate and remain smaller than their peers. For infants, lowmuscle tone may contribute to sucking and feeding problems, as wellas constipation and other digestive issues. Toddlers and older kids mayhave delays in speech and self-care skills like feeding, dressing, andtoilet teaching. Down syndrome affects kids ability to learn in different ways, but mosthave mild to moderate intellectual impairment. Kids with DS can anddo learn, and are capable of developing skills throughout their lives.They simply reach goals at a different pace which is why itsimportant not to compare a child with DS against typically developingsiblings or even other children with the condition. 25. Medical Problems Associated With DS While some kids with DS have no significant healthproblems, others may experience a host of medical issuesthat require extra care. For example, almost half of allchildren born with DS will have a congenital heart defect. Kids with Down syndrome are also at an increased risk ofdeveloping pulmonary hypertension, a serious conditionthat can lead to irreversible damage to the lungs. Allinfants with Down syndrome should be evaluated by apediatric cardiologist. Approximately half of all kids with DS also have problemswith hearing and vision. Hearing loss can be related tofluid buildup in the inner ear or to structural problems ofthe ear itself. Vision problems commonly includestrabismus (cross-eyed), near- or farsightedness, and anincreased risk of cataracts. 26. Medical Problems Associated With DS Regular evaluations by an otolaryngologist (ear, nose, andthroat doctor), audiologist, and an ophthalmologist arenecessary to detect and correct any problems before theyaffect language and learning skills. Other medical conditions that may occur more frequentlyin kids with DS include thyroid problems, intestinalabnormalities, seizure disorders, respiratoryproblems, obesity, an increased susceptibility toinfection, and a higher risk of childhood leukemia. Upperneck abnormalities are sometimes found and should beevaluated by a doctor (these can be detected by cervicalspine X-rays). Fortunately, many of these conditions aretreatable. 27. Prenatal Screening and Diagnosis Two types of prenatal tests are used to detect Downsyndrome in a fetus: screening tests and diagnostic tests.Screening tests estimate the risk that a fetus has DS;diagnostic tests can tell whether the fetus actually has thecondition. Screening tests are cost-effective and easy to perform. Butbecause they cant give a definitive answer as to whether ababy has DS, these tests are used to help parents decidewhether to have more diagnostic tests. Diagnostic tests are about 99% accurate in detecting Downsyndrome and other chromosomal abnormalities. However,because theyre performed inside the uterus, they areassociated with a risk of miscarriage and othercomplications. 28. Prenatal Screening and Diagnosis For this reason, invasive diagnostic testing previously wasgenerally recommended only for women age 35 orolder, those with a family history of genetic defects, orthose whove had an abnormal result on a screening test. However, the American College of Obstetrics andGynecology (ACOG) now recommends that all pregnantwomen be offered screening with the option for invasivediagnostic testing for Down syndrome, regardless of age. If youre unsure about which test, if any, is right foryou, your doctor or a genetic counselor can help you sortthrough the pros and cons of each. 29. Nuchal translucency testing This test, performed between 11 and 14 weeks of pregnancy, uses ultrasound to measure the clear space in the folds of tissue behind a developing babys neck. (Babies with DS and other chromosomal abnormalities tend to accumulate fluid there, making the space appear larger.) This measurement, taken together with the mothers age and the babys gestational age, can be used to calculate the odds that the baby has DS. Nuchal translucency testing is usually performed along with a maternal blood test. 30. The triple screen or quadruple screen (also called the multiple marker test) These tests measure the quantities of normal substances in the mothers blood. As the names imply, triple screen tests for three markers; the quadruple screen includes one additional marker and is more accurate. These tests are typically offered between 15 and 18 weeks of pregnancy. 31. Integrated screen This uses results from first-trimester screening tests(with or without nuchal translucency) and blood testswith a second trimester quadruple screen to come upwith the most accurate screening results. 32. A genetic ultrasound A detailed ultrasound is often performed at 18 to 20 weeks in conjunction with the blood tests, and it checks the fetus for some of the physical traits abnormalities associated with Down syndrome. 33. Diagnostic tests include: Chorionic villus sampling (CVS). CVS involves taking a tinysample of the placenta, either through the cervix or through aneedle inserted in the abdomen. The advantage of this test isthat it can be performed during the first trimester, typicallybetween 10 and 12 weeks. The disadvantage is that it carries aslightly greater risk of miscarriage as compared withamniocentesis and has other complications. Amniocentesis. This test, performed between 15 and 20 weeksof pregnancy, involves the removal of a small amount of amnioticfluid through a needle inserted in the abdomen. The cells canthen be analyzed for the presence of chromosomalabnormalities. Amniocentesis carries a small risk ofcomplications, such as preterm labor and miscarriage. Percutaneous umbilical blood sampling (PUBS). Usuallyperformed after 18 weeks, this test uses a needle to retrieve asmall sample of blood from the umbilical cord. It carries riskssimilar to those associated with amniocentesis. 34. Resources That Can Help If youre the parent of a child diagnosed with Downsyndrome, talking with other parents of kids with DS mayhelp you deal with the initial shock and grief and find waysto look toward the future. Many parents find that learningas much as they can about DS helps ease some of theirfears. Experts recommend enrolling kids with Down syndrome inearly-intervention services as soon as possible. Physical,occupational, and speech therapists and early-childhoodeducators can work with your child to encourage andaccelerate development. Many states provide free early-intervention services to kidswith disabilities from birth to age 3, so check with yourdoctor or a social worker to learn what resources areavailable in your area. 35. Resources That Can Help Once your child is 3 years old, he or she is guaranteed educationalservices under the Individuals with Disabilities Education Act (IDEA).Under IDEA, local school districts must provide "a free appropriateeducation in the least restrictive environment" and an individualizededucation plan (IEP) for each child. Where to send your child to school can be a difficult decision. Somekids with Down syndrome have needs that are best met in a specializedprogram, while many others do well attending neighborhood schoolsalongside peers who dont have DS. Studies have shown that this typeof situation, known as inclusion, is beneficial for both the child withDS as well as the other kids. Your school districts child study team can work with you to determinewhats best for your child, but remember, any decisions can and shouldinvolve your input, as you are your childs best advocate. Today, many kids with Down syndrome go to school and enjoy many ofthe same activities as other kids their age. A few go on to college. Manytransition to semi-independent living. Still others continue to live athome but are able to hold jobs, thus finding their own success in thecommunity. 36. Down Syndrome (Adult) Down Syndrome (Baby)