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| Amy Dunaway | |
Reprinted with the permission of the author. |
Home education is gaining increasing popularity in the United States. Approximately 1.7 to 2.1 million students were home educated in 2002-2003 (National Home Education Research Institute, 2003). Home education is growing at a rate of 7-15% per year (National Home Education Research Institute, 2003). The key reasons for home education are the transmission of beliefs and values to children, close family relationships, controlled and positive peer social interactions, quality academics, alternative approaches to teaching and learning, and safety (Lines 1992, Ray 1992, 1997, 1999). Families are educating their children with special needs in their own homes to provide them with an education that targets their specific learning needs and to provide an education that will not sacrifice academic learning for life skills and "socialization." Many families leave the public school system after unsatisfactory academic progress for which they saw no other option than to educate their child at home.
Children with Down syndrome face etiology-specific (specific to Down syndrome) learning challenges. Research has given us a picture of the specific strengths and weaknesses of children with Down syndrome — different from other causes of mental retardation. Educational plans need to reflect these strengths and weaknesses and teaching needs to target the way they learn to improve outcome. Home education can meet the needs of children with Down syndrome more effectively than the public or special education systems and maximize the child's potential globally and make the most of their abilities.
Home education is a legal option that all parents of children with special needs should be aware of as they consider educational options. Home education should be familiar to every parent for parents are their child's first teacher. Home education does not begin with early intervention or preschool but at birth. Children with Down syndrome often need specific instruction in skill acquisition and development. It is the parents, because of their constant presence, deliver the majority of the instruction.
Children with Down syndrome have special learning needs and a specific learning profile (Dykens, Hodapp & Evans, 1994). The parents of children with Down syndrome may be best prepared to offer targeted etiology-based intervention due to the intimate knowledge they have of their child's developmental level and language skills. Professional therapists and educators often have low expectations for children with Down syndrome based on their IQ, delayed expressive language and general underperformance.
The awareness of the typical learning profile has major implications for all educational practice. It demands changes in educational philosophies in the best interest of every child with Down syndrome whether they are in the public school system, in private education or educated at home. Most children with Down syndrome are capable learners if given the proper support.
Home education offers the best learning environment for children with Down syndrome. In the home setting, the needs of children with Down syndrome can be met consistently with attention to their specific etiology-based needs with targeted interventions on a one-to-one basis.
Home educators use a wide variety of methods to teach their children. They move between methods as the situation dictates for the best learning environment for their children at any given moment. They are not serving the needs of a classroom filled with 20-30 children, each with their individual learning needs. Teaching does not need to be diluted to fit the needs of the classroom.
There is little research available in the area of home education and the child with Down syndrome. The National Challenged Homeschoolers Associated Network (NATHHAN), a Christian homeschooling support network for parents of children with special needs, conservatively estimates that there are currently 14,000 home-educated children with special needs in the United States (Bushnell & Ryckman 2003).
This literature review will apply research of how children with Down syndrome learn to the home education setting and is also applicable to all educational settings.
Down syndrome is the most common known cause of cognitive impairment in young children. It is a chromosome disorder which affects mental and physical development. Most individuals with Down syndrome function in the moderate range of mental retardation.
Children with Down syndrome face significant learning challenges. The complex interaction between etiology-specific strengths and weaknesses, the environment and psychological factors play a part in how learning does or does not take place.
Delays in speech and language (Cunningham et al. 1985), processing issues, impaired cognition (Buckley & Bird 1994) and behavior difficulties (Coe et al. 1999) can cause obstacles to learning in children with Down syndrome. Attention to these issues during the formative years is the key to improved learning and far better outcome for people with Down syndrome. Most children with Down syndrome will be functioning members of society as they grow and develop into adults
Motivational deficits and underperformance are also factors in lack of skill acquisition. and often appear in learning contexts. Children with Down syndrome often go out of their way to make learning harder by using diversionary and delaying tactics, non-committal responses and misuse of social skills. They rely on others even when they don't need help (Wishart 1998). Patricia Oelwein refers to this behavior as learned helplessness (Oelwein 1995).
Down syndrome is one of the most well-researched syndromes that cause intellectual impairment (Hodapp 1996). Much is known about Down syndrome and the way children with Down syndrome learn. Home education can provide the best environment to apply the research in hopes of improving academic and functional competence. It appears that mainstream and special educators believe that etiology-based interventions hold little value. The general focus of educators has been on the degree of mental retardation (Hallahan & Kauffman 1997). This disregard for the cause of the child's intellectual impairment is common to most educational interventions and is a disservice to children with Down syndrome of all ages (Hodapp, DesJardin, Ricci 2003).
The reasons for inattention to etiology within special education are possibly (Hodapp & Fidler 1999):
Children with Down syndrome often share a set of observable behavioral traits (phenotype) displayed in the following profile. Not all children will show the typical strengths and weaknesses listed below but children with Down syndrome are more likely to share these behaviors. We can help children with Down syndrome to learn by understanding their typical developmental and learning profile (Dykens, Hodapp & Evans, 1994) and teaching to their strengths.
In most individuals with Down syndrome, this clear profile of strengths and weaknesses allows us to construct interventions that target the specific needs of children with Down syndrome. These targeted etiology-based interventions will capitalize on the strengths of children with Down syndrome. Amidst many recommendations, there have been relatively few efforts to implement targeted etiology-based interventions except in the area of reading. Other suggestions found here will be based on known strategies that may help in overcoming obstacles to learning.
Speech, language and communication skills are central to the development of cognitive abilities. Cognitive delays may be, in part, the consequence of language learning difficulties. Any serious language delay will inevitably result in increasing the cognitive delay (Buckley 1993). The primary focus as home educators of children with Down syndrome should be stimulating and laying down language pathways from early infancy on (Buckley 1999). The impact of speech, language, and communication difficulties raises significant issues for many children with Down syndrome.
Most children with Down syndrome perform poorly in grammar, articulation and expressive language. These issues are complex and related not only to cognitive issues but also anatomical and physiological differences. The guidance of a speech-language pathologist will provide invaluable in language development and articulation issues. The therapist will be able to provide practical suggestions and activities for each step of the way.
Processing challenges and cognitive deficits often impede the learning process in children with Down syndrome (Buckley & Bird 1994). Short-term memory deficits (McDade & Adler 1980) and short attention spans (Wolpert 1996) contribute significantly to processing difficulties. The following is a brief overview of processing difficulties. The resources at the end of this article offer in-depth information.
Auditory processing can be broken down and defined as follows (Kumin 1994):
Auditory memory is the ability to retain and recall information given verbally.
Auditory discrimination is the ability to recognize and identify sounds, to hear likenesses and differences.
Auditory perception is the ability to receive and comprehend words and concepts through hearing.
To process information we need to receive, remember, discriminate, organize, store, retrieve, and respond to information. As we process information, we make sense of what we hear in order to use the information.
This can be complicated by the fact that most children with Down syndrome are easily distracted by background noises (Kumin 1994) and visual stimuli (Derayeh 2001).
Problems can occur in any or all areas listed above. Clues to difficulties are:
Extensive research has been done into the memory impairments of children with Down syndrome. Reaserchers have discovered specific impairments in auditory (verbal) short-term memory (Jarrold, Baddeley, & Phillips 1999) and possibly impairments of the phonological loop (Jarrold & Baddeley 2001). The phonological loop is thought to be the area to hold sound patterns and determined to be essential for learning spoken language.
Auditory memory is the ability to retain and recall information given verbally. It is a relative weakness for children with Down syndrome (Marcell & Weeks 1988). They are best at retaining information that is meaningful (autobiographical memories for life events or knowledge of the world) (Laws 1995) or directly drawn from their lives (Kumin 1994). The later types of memories are stored in long-term memory. Long-term memory is relatively unaffected in people with Down syndrome (Buckley 1999).
Parents and educators often talk about the high "forget" rate for children with Down syndrome. Often times, these are skills and concepts that have not been fully mastered or not pertinent to life today but are important for the future. Many times learning has not been consolidated (Wishart 1993). Children with Down syndrome often need many opportunities and exposure to concepts to incorporate the material into long-term memory. Take the opportunity to review and move forward. Do not be frustrated or take it as a failure to effectively teach a concept. Sharon Hensley, author of Homeschooling Children with Special Needs, says that by the time you are tired of teaching the concept they are just beginning to learn (Hensley 1997). All newly mastered skills and concepts should be put in a review cycle to ensure consolidation of learning.
The following strategies are listed to support auditory memory:
The following exercise may be useful in increasing auditory memory skills. Start by simply showing and naming one picture. Cover the picture and ask what the picture is. As the child's recall ability improves, add two pictures and have the child name them after they are covered in order of presentation, from left to right. Increase the number of pictures with competence. Move slowly with these exercises. Never start above the child's ability level. Children with Down syndrome need to feel successful and enjoy the "game." This activity can also be done with objects, motions, words, numbers, and sentences. As the child becomes capable and understands the "rules", play the game without visual cues. Over time, the child will increase their ability to store and information.
There are many other types of recall activities to include in every home program that are functional and important to future independent life. For example, the child could help make the grocery list for a trip to the store. While at the store, the child could say what is on the list and help retrieve the items needed. Another activity requires the child could retell a story that was read to him/her to improve auditory memory skills. Recounting the activities of the day at the dinner table in conversation will be helpful and make memory tasks meaningful in everyday life. Adding similar activities to a home program will increase the child's attention span, processing efficiency, and therefore learning potential.
Children with Down syndrome often have difficulty following simple and complex directions (Buckley & Bird 1994) due to short-term memory deficits. Using games in childhood to increase the ability to follow commands will gradually improve the capacity to remember what is needed to complete tasks with multiple steps or complex directions.
Require full attention with direct eye contact when giving commands or directions. Have the child repeat the commands or directions before beginning the task if they are able. Initially, it will be helpful to work in familiar surroundings, using familiar language with familiar objects or tasks. Increase the complexity of the requests as the child's memory improves. Adding objects from different rooms and new vocabulary are ways to increase complexity. Give the child cues and reminders as needed to complete the task successfully. Success feeds motivation!
The hierarchy for understanding and responding to commands and directions is:
Make following directions interesting and fun, incorporatinog games or motor activities. The following games may be helpful.
The first activity involves a series of hand motions. After defining the body parts, begin with one simple, familiar command such as touch your nose. Add another body part as your child is able and understands the vocabulary, such as touch your nose and touch your toes. Soon the child will be able to follow a series of commands while having fun!
The second activity involves an obstacle course set up in the home with objects easily found around the house. Give a series of commands to get through the obstacle course. Add objects along the course to pick up or deposit at certain points as the child makes his/her way through the course, working through the hierarchy of skill levels listed above.
These activities improve memory skills, are fun, and may carry over (become generalized) into other aspects of life. Be creative and find out what works for the child.
Difficulties children with Down syndrome have with attention and learning are often related to impaired cognition, processing difficulties and/or short-term memory deficits (Wolpert 1996). If what we are trying to involve them in is meaningless to them, we tend to quickly loose their attention or behavior problems arise. Avoidance behaviors (resistance to the task generally manifested by cute or charming behaviors or refusal to participate) are common when work is too hard and poorly motivated performance on tasks that are too easy (Wishart 1993). Another factor impacting attention difficulties may be related to physical problems such as low tone, hearing, thyroid problems or sleep disorders (McBrien 1998). Increasing attention span is a slow process but is possible with persistence.
Suggestions to overcome problems of attention:
Children with Down syndrome, as reported by their parents, often have delightful personalities. They often exhibit such attributes such as kindness and thoughtfulness, and are generally reported to be affectionate (Carr 1994). They can also exhibit challenging behaviors that can be difficult to resolve. A significant number of parents report their children with Down syndrome to be stubborn (79%) or disobedient (74%) (Dykens et al. 2002). Behavior difficulties should have the highest priority in the home educating household. Without control of difficult behaviors and discipline on all parts we cannot successfully educate our children.
It is important to know all behavior is a form of communication. Challenging behaviors are often secondary to impaired verbal expression and cognitive abilities and should be taken into account when looking at behavior patterns (Patterson 2002).
Children with Down syndrome often do not respond to typical parenting styles such as time outs, punishments or spanking. To focus on repression of behavior or punishment often leads to more undesired behavior – behavior that is harder to change, increased escape and avoidance behaviors and counter-coercion (Edmunson and Turnbill 2002). Use positive behavioral support to encourage appropriate behaviors.
In dealing with behavior issues, observation and analysis are essential steps in overcoming challenges. As with most areas of learning in children with Down syndrome, proper behavior must be explained and modeled. Incorrect behavior must be clearly defined. Have a plan to resolve challenging behaviors and use it consistently. Inform others involved in daily care and activities of the plan for consistent enforcement. Enforcing rules and a code of conduct haphazardly is confusing for all children but even more so for children with Down syndrome. Ridding a child of challenging behaviors will likely take many more learning trials than those needed by a typically developing child. Patience, consistency and diligence will be the keys to resolving challenging behaviors. If the child has challenging behaviors beyond your ability to manage, such as oppositional, self-stimulating, or repetitive behaviors, seek professional help to gain control of these behaviors so the child is in the best state possible to function and learn. Children must be healthy physically and mentally to participate effectively in the learning process. It is important to rule out medical concerns as a source of difficult behavior.
Educating children at home can offer an atmosphere where the choices and consequences are articulated as necessary and dealt with immediately. This allows the parent to make the best choice available and wrong choices can be discussed and dealt with consistently. According to John Unruh, Ph.D., author of Successful Parenting of Children with Down Syndrome, good behavior and social skills are the keys to success for adults with Down syndrome (Unruh 1994).
The following practical suggestions may be helpful to gain compliance for the parent of a child with Down syndrome based on how children with Down syndrome learn and their processing difficulties:
Parents of children with Down syndrome (Gilmore et al. 2003) and researchers (Niccols et al. 2003) report lower levels of motivation in children with Down syndrome than found in typically developing children. In one study of mastery motivation (the intrinsic motivation children have to interact with their environment in order to learn about it), young children with Down syndrome score about the same as children of similar mental ages (Gilmore et al 2003). Children with Down syndrome often have mental ages significantly below their chronological age.
Wishart (1993) suggests that the extended period for successful acquisition of most skills and the high rate of failure inevitably experienced when first attempting to learn any new skill cannot be conducive to learning. She finds it is not surprising that many children with Down syndrome are reluctant learners. Wishart suggests that an inherent instability in the developmental process in children with Down syndrome may be due to a complex interaction between inadequate motivation and inefficient learning processes. Poor levels of motivation may be contributing directly to the growth of deficits in cognitive functioning (Wishart 1998).
In studies of how young children with Down syndrome approach learning have demonstrated a range of counterproductive behaviors including task avoidance, lack of initiative, low persistence with difficult tasks and unstable performance over time (Wishart and Duffy 1990; Wishart 1991, 1993)
Consolidation of new skills may be compromised by poorly motivated performance on easy tasks while avoidance strategies produced in response to difficult tasks result in many missed learning opportunities. Avoidance behaviors may include locking eye contact, smiling and refusal to complete the task. Dr. Wishart noted common diversionary tactics included hand clapping, slipping under the table, or other "party" tricks to avoid tasks (Wishart 1993).
Failure is a crucial aspect of every child's ability to interact with the world. Early experiences contribute to a child's confidence in their abilities. Success or failure impacts the child's choice of activities, how much effort to devote to the activity, and how much pleasure they derive from the activity (Fiddler 2006).
Even very young children meet many experiences with failure Hypotonia in Down syndrome results in ineffectual movement. Speech and language delays and articulation difficulties may cause ineffectual attempts at communication. Self-evaluation of competence occurs in early stages of development - before the child can express themselves verbally (Fidler, 2006).
Children with Down syndrome often encounter experiences they are not equipped to handle and may develop feelings of ineffectuality activity (Fidler, 2006). They prefer to respond in a way as to avoid failure (Wishart 1998).
Lowered expectations common in those who provide services and are partners in learning may also influence motivation (Wishart 1998). Expectations should not be predetermined because there is such a wide range in functional and academic competence.
Motivation-oriented interventions may prevent syndrome specific failure experiences and maximize early success (Fidler, 2006). Strength in a particular area, such as the relative visual strengths of children with Down syndrome, influences the child's enjoyment and feeling of mastery. In domains where deficiencies exist may lead the child to dislike and thus avoid the particular set of tasks. Targeting the specific learning profile of children with Down syndrome (Dykens, Hodapp & Evans, 1994) may very well lead to increased motivation.
Errorless learning is instrumental in successful learning experiences in children with Down syndrome (Duffy & Wishart, 1994, Fidler 2005, Fidler 2006). Errorless learning is defined as teaching new tasks by guiding the child through each step correctly, and not allowing them to fail. As the child becomes more capable, support (prompts, cues, or manual aid) can be reduced until no longer needed. Errorless teaching uses the same language with each lesson and repeating the process several times (as long as it takes) following the same steps, in the same order, using the same words. It is essential to pair visuals with errorless teaching.
Another errorless learning method is described by Patricia Oelwein (Oelwein 1995) to teach children with Down syndrome to read. She uses the matching, naming, selecting method to teach young learners to read in an errorless fashion. This method can be used in every subject and not just limited to reading skills.
With errorless learning, the child learns by imitation and practice versus trial and error. This method is intended to develop a strong base for higher levels of learning such as problem solving with a trial and error approach. The child is supported, successful, and failure is eliminated.
Home education is defined by many parents as preparing their children for adult life. The needs of the whole child are taken into consideration - spiritual, emotional, social, physical, and academic.
In a homeschooling environment, the child is offered an environment in which information is offered by a person who understands the child's needs, interests, and capacities. The parent takes an active role in making the clarifying old and defining new environments making new skills and concepts understandable while taking into consideration past and future experiences to ensure they are compatible with the child's needs and abilities. Care should be taken to link previous information and experiences to previous concepts, skills and experiences in an organized fashion.
Educating a child with Down syndrome takes on a whole new realm versus educating a typically developing child. With typically developing children feedback is generally immediate. In educating a child with Down syndrome, feedback is long-term. Repetitive input before consolidation of learning is common. They need the supports available in this article to increase present learning potential and improve the opportunity to learn from future experiences.
There are many benefits to home educating a child with Down syndrome:
Careful planning is essential when educating a child with Down syndrome. They need information presented in a clear orderly fashion, linking it to what they presently know to build on skills. Home education allows information to be presented in a manner that has familiar vocabulary and grammar. Home educating families are intimately knowledgeable of their child's level of comprehension. The language of the curriculum can easily be modified to the child's level of understanding. Planning allows for smoother flow of the delivery of the content of the curriculum.
Planning allows for research into curriculum choices to decide what will be most suitable for the child based on his or her developmental level, learning style, and interests. Planning allows you to see where the content of the curriculum will lead, what skills are a prerequisite for higher skills, and what is needed for the success of the child as an adult. It also allows for adequate time to acquire or make visuals necessary to support the content of the curriculum. Almost every curriculum will have to be modified to support learning in children with Down syndrome. Bob Jones University Press offers a modified curriculum for the K4 and K5 levels for children with Down syndrome and similarly challenged learners (Brown, pilot program).
Developmental and academic skills inventories present skills and concepts sequentially, in the hierarchy of typical childhood development. These inventories will tell you where the child's skill level is within selected areas - fine motor skills, gross motor skills, self-help skills, social skills, and cognitive skills are along the scale. Children with Down syndrome often do not progress through the normal scope and sequence of curriculum as rapidly as their typically developing peers. Setting goals and creating an individualized education plan (IEP) is a way to address any areas of weakness or deficiency. It is a written plan for instructional direction. Children with Down syndrome present with a wide variability in cognitive function and functional competence. Creating an individualized plan for them, based on their skill level, will be helpful for learning success.
The IEP for children with Down syndrome should include:
A formal, written individualized education plan is not required outside the realm of the public school system in most areas. However, the process of creating a formal plan will be beneficial in moving the child toward maximum independence by keeping focus on goals for academic and functional growth.
Keeping a daily journal of activities is often helpful in assessing performance and making decisions on what needs further work. This can also function as a place to look at inadequacies in teaching/learning or to look for inconsistencies in skill/concept development. It may be helpful to have objectives for each subject or skill with an evaluation of the activity. Record keeping does not have to be complicated, just pertinent to the child and useful to the parent.
Literacy should be a goal for all children with Down syndrome. Reading will allow our children increased functional and academic competence and also provide pleasure as they grow. It is only within the last 20 years that attaining some level of reading ability has become a goal for children with Down syndrome. Literacy will allow children with Down syndrome to access the literate community, a community denied to them until recent years (Kliewer 1998).
Success in reading in children with Down syndrome is associated with advances in general cognitive ability, vocabulary, grammar and visual and short-term memory in proficient readers (Groen et al 2006).
Reseach suggests a distinct profile of areas of strength and weakness within literacy skills in Down syndrome. This profile includes stronger word identification skill, poorer word attack skills and poorer comprehension. (Fidler et al 2005).
It was initially thought that children with Down syndrome rely heavily on sight word strategies when learning to read (Buckley, 1985: Coussu, Rossini, & Marshall 1993; Evans, 1994). Recent studies suggest that decoding abilities are present but reduced when compared to sight word recognition skills (Boudreau, 2002; Cupples & Iacono, 2000' Fowler, Doherty, & Boynton, 1995; Kay-Raining Bird, Cleave, & McConnell 2000). When looking at these studies it is important to note that length, method of instruction and amount of instructional time is not noted.
The literature reports the average word recognition level people of all ages with Down syndrome to be equivalent to the average 6-8 year old typically developing child with wide variability present (Groen et al 2006).
Children with Down syndrome are capable of learning to read sight words at approximately two to three years of age with some starting earlier (Duffen 1976, Duffen 1979, Buckley et al.1986). Learning to read may be an effective way to improve language difficulties. Some children can learn to read before they can speak. There are some who wonder if it may be a more effective use of our time and energy to teach reading versus sign language during those early years. At the very least, teaching reading and sign should be done simultaneously. As homeschooling parents, we can make and implement these decisions. Glenn Doman, author of How to Teach Your Baby to Read, refers to teaching one and two year-old typically developing children to read in his book (Doman & Doman 2002). This method is very easy to use and takes only a few minutes per day. Many parents using the neurodevelopmental approach have used this method to teach reading to their children with Down syndrome beginning at around 18 months to two years of age. This method is suggested for children up to three years of age.
Patricia Oelwein, in her book Teaching Reading to Children with Down Syndrome, has developed a reading program for children of typical school age (Oelwein 1995). This method works well for children who were not taught reading at an earlier age. She recommends teaching phonics after developing a basic sight-word vocabulary of 50 words.
Few studies have investigated reading comprehension in people with Down syndrome. The literature (Groen et al 2006) suggests that reading comprehension functions at about the same level as oral language skills. Given the language difficulties of people with Down syndrome it is expected that their comprehension levels will be reduced.
Abilities associated with successful reading comprehension in typically developing children include broad language skills and adequate working memory. Problems associated with poor reading comprehension and found in most children with Down syndrome include deficits in expressive vocabulary, grammar skills and semantic knowledge and deficits in working memory skills.(Groen et al 2006).
The studies show that people with Down syndrome have comprehension levels comparable to 6 - 9 year old typically developing children. It is has been noted that children with Down syndrome often are able to read above their level of comprehension and progress in word recognition appears greater than their level of comprehension (Groen et al 2006).
The following may be helpful in aiding reading comprehension (Kumin 2001):
Math skills are vitally important to our children's lives to promote independence and should be given a high priority. DeAnna Horstmeier, Ph.D., author of Teaching Math to People with Down Syndome and Other Hands-On Learners, found her adult son with Down syndrome was more handicapped by his deficits in math than any other factor (Horstmeier 2004)
Math skills tend to be difficult for many children with Down syndrome. They are less likely to develop concepts through loosely structured play and exploratory learning (Buckley & Bird 1994). Children with Down syndrome need someone to describe verbally what they are discovering as they observe and discover. Componet skills of each stage of development may need to be explicitly taught (Buckley & Bird 1994). Factors likely to improve success are to have concepts demonstrated and given visual representations (Buckley & Bird, 1994, Nye & Bird, 1996) during learning sessions. Errorless learning is important for successful learning experiences (Duffy & Wishart 1994). Working near the child's developmental and academic skill level may encourage motivation and success (Wishart 1993). Do not limit math to formal school sessions. Opportunities for math skills practice can be found around us all day long!
The language of math is important to learning concepts (Nye & Bird, 1996). This needs to be targeted and for learning to understand math concepts. Vocabulary can be written on a blank note card and illustrated on the other side. Proceed through the matching, selecting, and naming process to support learning.
Children with Down syndrome should be provided the opportunity to practice math skills from an early age. They need to apply them in a meaningful context and practice skills regularly (Bochner et al. 2002).
Time, calendar, and money concepts are often difficult for children with Down syndrome. With time and plenty of practice these concepts are within reach of most of our children. These skills are important to the daily functioning and competence of people with Down syndrome.
At the time of this writing, my daughter with Down syndrome is fifteen years old. She became involved in our local Early Intervention Program at the age of 9 months after correction of her heart defect (AVSD, insertion of permanent pacemaker) and a short time on a waiting list for services because of local demand and lowered expectations based on diagnosis.
We noted very early in our daughter's life that she was susceptible to infections when exposed to the community at large. We also noted that she tended to be more ill in appearance and the illness tended to last longer with a slower recovery rate than our typically developing children. We reduced her exposure to the community during the times of increased respiratory and gastrointestinal illness until she was older and better able to tolerate viral and bacterial illnesses. We were able to avoid hospitalization during infancy, unlike many acquaintances with young children with Down syndrome exposed to the community frequently in Early Intervention Programs in group settings or daycare. Our daughter with Down syndrome has had all the usual childhood illnesses with the exception of otitis media. Her hearing is normal.
We began her formal home education at three years of age. Since leaving early intervention she has been exclusively home educated with therapy services provided by the private sector.
We have always used professionals, primarily on a consulting type basis, to improve the quality of our home program. After evaluations, we request a written plan to implement in our home program. Every homeschooling parent understands that it is not the weekly visit with the professional therapist that affects growth and development. It is the daily interactions with the child that have the biggest impact (Buckley 2004). Professionals give us the knowledge and the tools needed for success. I believe that professional input is extremely valuable to our home program. It provides input in areas where I have little expertise. It gives us a well-rounded program tailored to our child's specific needs.
For several years we used the services of an educational consultant with a Master's degree in special education. He provided us with curriculum choices, general information about learning in children with cognitive challenges, and information about the academic and developmental skills progression in typically developing children. I was still unsatisfied with her progress.
Errorless learning has been instrumental in my daughter's learning successes. At this point in my daughter's education, I do not allow her to guess at an answer during formal learning sessions. I have learned the hard way that allowing her to guess incorrectly may cement the wrong answer as correct. Our lessons are scripted, using the same language until the concept is mastered. I do not test my daughter. I am fully aware when my daughter has mastered and generalized a concept. Testing is necessary for professional consultations. The professionals are not teaching my daughter. They are providing input into our educational plan, which I find beneficial for developing and achieving goals.
Targeted etiology-based intervention has also greatly impacted my daughter's learning success. Our home program now specifically targets my daughter's learning needs as a child with Down syndrome. Using the research here and one-to-one educational support, she has made significant progress in learning. She delights in learning, as we want for all our children. She applies it to her daily activities. For my daughter, learning is her life. It is not a passive event that occurs, she is an active participant. In our home, my daughter is supported and challenged, and is productive and successful. Targeted, successful etiology-based instructional intervention should lead to a higher level of ability to function and an improved academic outcome for many children as it has in our home.
The awareness of the presence of an etiology-specific learning profile has implications for educational practice and in fact, demands changes in educational philosophies in every setting for the individual child with Down syndrome.
The public school system supports the inclusion model for most children with Down syndrome in most communities. Educators (and most parents) are hesitant to segregate children with Down syndrome to target their special learning profile. When children are segregated for learning in the United States the primary focus becomes life skills. Academics are generally included but become secondary (Wolpert 1996). Children included in mainstream classrooms are often not graded on academic performance but on physical performance, participation in class, and effort in daily projects (Wolpert 2001).
The child with Down syndrome who is successful academically in the public school system generally has intensive parental and therapeutic intervention. Karen Gaffney, noted athlete, speaker, and advocate for the promotion of inclusion shares her journey as a person with Down syndrome on her website and in videos (Gaffney 2006). It is a remarkable journey giving hope to many families with children with Down syndrome. Her story is one of a child with intensive parental intervention, private schooling with the exception of preschool (Montessori) though grade four, and outside support in the form of tutors, a child in essence provided with home education.
As we gain insight into the individual learning needs and obstacles to learning in our children with Down syndrome, we gain knowledge as to how we can overcome these obstacles. A strong focus on what facilitates learning in all children such as attention skills, task perseverance, motivation, compliance, and meaningful social interactional behaviors from infancy on will impact and improve our children's ability to learn and increase learning successes. In addition, developing a program that targets the specific learning profile of children with Down syndrome to ensure academic success will provide a quality education to improve future functioning of the child as an adult.
Home education is a viable option for families with children with Down syndrome. It is a place where targeted etiology-based interventions can be offered in the best learning environment for children with Down syndrome. Intensive intervention by those who have intimate knowledge of their academic and functional competence offer children with Down syndrome giving them opportunities otherwise not available in the public school system. Opportunities which are not limited by the walls of the classroom or the lack of knowledge of targeted interventions or lowered expectations of professionals working with the child.
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The Brigance is a diagnostic inventory of skills. Many families with children with special needs can use this diagnostic inventory to test and keep track of skills for their child. The inventory does not compare your child to other children like the achievement tests do. Brigance has developmental scales for all ages. It can be found at Curriculum Associates, 1.800.225.0248 (for catalog) or: www.CurriculumAssociates.com
The Brigance can be rented from HSLDA (Home School Legal Defense Association) by members of their association.
Another good developmental scale is one developed by VORT. They publish the HELP (Hawaii Early Learning Profile) Series. They have Assessment Strands (an inventory) and activities for learning for early education and elementary school ages. Their address is:
VORT Corporation