Exceptional Children & The Defective System
/Disabilities are still often regarded as a hindrance to the livelihoods of both the young and old. Particularly important is the transformation our society has embraced over the last decade where “developmentally disabled children” are now placed in all inclusive classrooms. This definition of developmentally disabled (DD) can be applied to children with physical or mental disabilities that require more than average educational assistance and cross a broad spectrum of obstacles that deter their psychological, neurological, physical or emotional development.
Despite the progressiveness of our culture, educational institutions struggle to meet the vital needs of special educational students. This is merely in a classroom setting, where often the numbers of students outweigh the availability of their teachers. So then, it comes as no surprise that the psychological and emotional support so necessary to a “neurotypical child” is often limited or completely unattainable for children of special needs.
{Illustrative} © 2015 Akron Children's Hospital
Average children with the capacity to relate their feelings, emotions, needs and wants is entirely different than of a special needs child without the ability to communicate in the same equivalency. Often the obstacles of communication are disheartening, leaving many to question if a child of special needs can be reached at all. It is particularly straining when a child of special needs loses a loved one, where the typical procedures of grief counseling may hinder upon first blush. The purpose of this article is to demonstrate that children of special needs are reachable, despite their disabilities’ hardships, and that loss can impact every child despite their handicaps . I will also tap on the historical, cultural and societal obstacles that have led to the detachment of society's understanding of the disabled.
It is already known how complicated the process of grief and mourning is upon adults, much less children. The complexity of emotions effects each individual uniquely and definably from one another, often this process of grief is often characterized in cycles. Shock and disbelief, anger/denial, acceptance, with the inevitably need to talk it out. Although this cycle is shown in a model form, grief and mourning do not follow the same exact pattern. It may supersede from acceptance to full anger, or the individual may remain in an embraced denial with disbelief of their painful loss.
This pattern echoes within adults just as much as it may with children, however the process is unique regarding children. “Children experience the grieving process differently than adults and differently from each other, depending upon their age and developmental level in addition to their unique, individual differences.” (Swank, 2013, p.235)
However, it is just as equally important to point out that children mirror their surroundings. If a parent dies, leaving a spouse behind there is more than likely going to be times of resentment, anger or withdrawal as the grieving parent copes with their loss. The child may very well see this and immediately feel fear. “Children misinterpret their parents’ anger, resentment and emotional withdrawal as abandonment.” (Clinton and Sibcy, 2006, p.162) This scenario is common and often developing disconnect begins from the onset of loss.
Whereas with special needs children, these concepts can also be applied in theory. Their developmental levels will vary greatly, as an example: A six year old Autistic child is neurologically and developmentally on a three year old level. So where he may be six years old in physical size, he operates on a three year old system of communication and cognitive skill level. Understanding the developmental level of the child is especially important to understand no matter the child’s physical or mental disability .
It is important to note, that developmentally disabled (DD) children are classified under a spectrum of disabilities. These “…include but are not limited to mental retardation, cerebral palsy, autism spectrum disorders, genetic and chromosomal disorders (e.g. Fragile X syndrome, Down syndrome, Williams syndrome, Prader-Willi syndrome), and fetal alcohol syndrome.” (Sormanti, 2011, p. 180) Generally developmental disabilities (DD) are diagnosed well before the age of 22 with supporting documentation from doctors, therapists, hospitals and schools.
Taking into consideration the DD child’s developmental level, it is also vital that it is understood these children are not inept. “Children and adolescents with disabilities are an extremely heterogeneous group of diverse learners, each with unique learning strengths and needs.” (Tarver-Behring, 2005, p.1) As aforementioned, average children carry a diversity of their own but DD children carry similar if not exceptional capabilities in their areas of strength.
Though often they are dismissed based on their disability as incapable or unintelligent, this can be easily transcribed as premeditated assumptions of a DD child’s abilities. “Pity, low expectations, repulsion to physical abnormalities, misinformation, and other biases can preclude effective counseling.” (Tarver-Behring, 2005, p. 2)
The complexity of developmental disabled (DD) children is of the many changes they encounter in childhood. Whether this is contributed to health related issues, instability at home, changes in education or psychological/physical hardships from their disability (i.e. anxiety, seizures, etc.). “Other profound and often unrecognized losses experienced throughout their lifetime include: loss of identity, loss of ability, loss of accessibility, loss of opportunity, and loss of independence.” (Sormanti, 2011, p. 181) Many struggle with loss of their freedom frequently, having a caretaker or guardian making decisions on their behalf without their consent can contribute to an overall feeling of personal insecurity and unimportance.
Stability and the need for security are reoccurring themes as they progress through their childhood. So if the loss of a caretaker or parent should cross their path, it becomes burdening to the DD child to function even within their means. Without the ability or the given right to communicate their grief, they are left abandoned. These are referred to as “silent losses”, where the DD child is shuffled into a new environment with new caregivers without acknowledgement by others as to what the DD child feels or desires. The loss is simply overlooked, leaving the DD child in a state of insecurity and defeat. “Despite such far-reaching losses, it is only within the past three decades that grief and bereavement have been recognized and studied in those with DD.” (Sormanti, 2011, p. 181)
The other misconception is that most DD children should be sheltered from death, to avoid causing the child unnecessary discomfort or distress. The assumption is also made that the DD child may not fully understand the loss of the caretaker or loved one, so it is simply left unmentioned. “The basic reason we do not communicate directly is that we are afraid.” (Cloud, 1998, p.196) Despite the reasoning for the silent loss, a DD child cannot be punished indirectly due to the pain it may cause.
"New research on Autism and suicide", Psychology Today © 1991-2015 Sussex Publishers, LLC {illustrative} stock photo.
The concept of death is the first step to communicate to a DD child, as you would with an average child. Avoid utilizing euphemisms for death; such as passing away, departed or lost. The use of words such as dead, dying, or die are more straightforward and less confusing in its usage and address the loss more directly for the DD child. Allow the discussion to focus of what death is and explain in honesty as to the cause of death of their loved one. “Provide children with simple facts about the cause of death. Assure children that death is not a punishment and is not a result of anyone’s thoughts, wishes or behaviors.” (Sormanti, 2011, p. 183)
This can be difficult at first in explanation, but patience and reassurance are necessary with all children, much less a DD child. Allowing the flow of questions from the child will help them gain an understanding of the events, because with questions answered there is reassurance and a gained comfort.
Very likely a DD child will reflect signs of grief and mourning, which may translate into bad behavior, abnormal sleep patterns, lack of appetite or withdrawing. Similar to the average child, but with a defined difference in the frequency and intensity.
{Illustrative} Stock Photo, user created elements.
“Children with DD are more likely than their typically developing peers to use coping strategies that entail an increase in negative behaviors.” (Sormanti, 2011, p. 184) These symptoms may include repetitive actions, self-harm, aggression, head banging or other similar behaviors. These symptoms will be noticeably more intense in their values and/or more frequent in nature. However the most observed in most DD children, just as in DD adults, is that of anxiety.
“In order to stop or control anxiety associated with loss, a child with DD may display an increase in compulsivity, perseveration, and ritualization of strongly preferred patterns in daily activities (e.g. rigidly observing the sequential steps for getting dressed and prepared for school).” (Sormanti, 2011, p. 184)
These traits are also comparatively seen in non-DD children in the same fashion. Dependent on the developmental disability, the abnormalities in behavior will be clear to families, caregivers, doctors, teachers and therapists. All of which should be reported to a counselor or therapist for consultation. Just as with a non-DD child, the behavior can escalate if not addressed as soon as it is observed.
The best approach for counselors involved with children and adolescents who have physical and neurological disabilities is to work closely with the multidisciplinary team of the school’s special educational personnel, physicians, community specialists, and personnel from governmental services (such as vocational counselors), who provide the primary services to these students. (Tarver-Behring, 2005, p. 6)
Advantages to addressing the changes in behavior in DD children is of focusing on their strengths to help them cope with grief. Where for some children their strengths lie in communication (verbal), a DD child may communicate in (non-verbal) play or activities.
Hospice of the Piedmont, Grieve COunseling, bereavement and Grief groups. Journeys Program. {Photo from Hospice of the Piedmont, scrap booking in the journeys program}
A review of the literature shows that most interventions for grieving children consist of support groups. Other types of interventions include the use of art through drawing, creating collages, and painting. Another method that can be beneficial when working with grieving children is scrapbooking. This intervention may be used along with individual and/or family therapy. (Williams, 2008, p. 458)
Utilizing scrap-booking as an example of play, the experience of putting together an album of memories can be a healing process for the DD child. Personalized pages of photographs made by or with the child can encourage a narration of memories. Even if a child is limited verbally in their communication, the visual and personal exchange can be a form of experiencing their grief in a healthier means of emotional maturity.
Another means of counseling a DD child, is “Adventure-based counseling (ABC) involves the use of challenge course elements or ropes course activities to explore counseling issues through doing. This provides a creative alternative to traditional talk therapy.” (Swank, 2013, p. 237) This form of counseling focuses on group activities working in cooperation.
Although it may be found that the ABC program may be too advanced for particular DD children (with consideration to their developmental level skills and/or physical limitations), there are acceptable substitutions which could be made for activities. The levels of adventure could be packaged as necessary, though not in avoidance ABC’s focus. Interactive programs such as this, could be utilized on a broader scale for children of all developmental levels given the tailoring to the need.
{illustrative} source: Care2.com
When a loved one has died the pain experienced by family, friends and loved ones is deep and at times absent of its acceptance. Likely the avoidance of acceptance is a coping mechanism, whether this is due to lack of understanding or simply fear. Just as it is with adults, children process loss negatively.
Often they may blame themselves, uncertain as to the “why” their loved one died. With the complexity of death, there are the different forms of death. Long-term illnesses, accidental or unexpected deaths and natural/expected losses; each of these carry a different experience. Aside from how the individual themselves experience their loss, the way in which a loved one dies is just as important in knowledge.
Pain is a common emotion that is avoided in life, but when a death directly effects a child it carries an element of guilt or shame on the part of the child. To feel pain is a consequence, so as any child would assume they must have contributed to the death of their loved one somehow. After all, why would they feel such pain without it being a consequence?
The experience of pain should not be one of negative burden on the DD child. This is the “pain of maturity” (Cloud, 1998, p. 143), a step into a new understanding perhaps not otherwise experienced by the child. It is not needless or unfounded, it is a step of emotional growth that in the past may not have been seen as necessary for a developmentally disabled child to endure.
In previous times, the child may had been sheltered away from the world and cut off from human interactions. Very often under the misled assumption developmentally disabled individuals were not intelligent or aware of their surroundings. Now in our modern time, there is reachable avenue of communication despite disability, allowing concepts of patience and inclusiveness.
The goals of understanding pain are knowing that the loss was not their fault or within their control, and the pain they feel is justifiable not shameful is crucial. A developmentally disabled child has known a life of pain from an earlier age than most children. The frequency of this pain will vary from child to child, just as with any individual. Unfortunately, despite this revelation, the developmentally disabled individual has continually endured mistreatment or abuse from societal prejudices most of their lives. This in return has caused them great suffering in a world that refuses to fully embrace differences but instead chooses to embrace intolerance and ignorance.
To position this to the faith-based reader, in Leviticus 19:14 (KJV) the Lord says to those who mistreat the disabled that, “Thou shalt not curse the deaf, nor put a stumbling block before the blind, but shalt fear thy God: I am the Lord.” The reminiscent echo of the Gospel’s word has been sorely missed in a society where the developmentally disabled are poked fun of and belittled. This is also the danger of mixing religion with politics, both are muddled and manipulated in the aftermath. This is the path to a more deeply rooted issue of the physically/mentally disabled and our society. To address developmental disabilities without mention of the history of the maltreatment of our most precious citizens would be an obscene decision. Unfortunately the mental institutions of the recent past have caused more harm than good in the area of DD.
{Illustrative} © 2014 Council on Contemporary Families
The general societal ignorance of developmental disabilities have created obstacles in the field of neurological disabilities, just as the laws of the United States are poorly outdated in providing the ability for DD individuals to exercise their rights. As an example, “…an incompetent developmentally disabled person may choose whether to terminate or continue life-sustaining treatment, but the lack the ability to exercise that right. A developmentally disabled woman may not want to be sterilized, but may be unable to express her will. In addition, a developmentally disabled person has the right not to be placed in an institutional setting, but how can that right be exercised if her parents choose to commit her?” (Krais, 1989, p. 334)
This falls into the law of self-determination, where the DD individual’s case of exercising these rights must be filtered by the United States courts for either: best interests or substituted judgment. Of course this is under the premise that the developmentally disabled individual (child or adult) is incompetent. Incompetence has had a generalized meaning throughout history with its recognized definition by the courts. Developmentally disabled is “attributable to: mental retardation, cerebral palsy, epilepsy or autism…[and] results in impairment of general intellectual functioning or adaptive behavior…” (Krais, 1989, p. 333)
This definition, summarized here, focuses on the DD individuals who have been incompetent since birth (or diagnosed prior to the age of 22). Automatically the assumption is made that though a person may be mentally competent to make their own decisions they are still an incompetent developmentally disabled person. Therefore they fall under the courts review of self-determination of said individual.
Returning to the two tests of self- determination recognized by law. The best interest test simply disregards the expressed wishes and desires of the DD individual and focuses primarily on the DD individual’s necessities. The substituted judgment test is that of the court’s ruling from the perspective of the DD individual’s plausible desires and needs. Either way, very little is given to the developmentally disabled person’s own decision making. Assumptions much like a caretaker takes upon themselves.
The DD person spends a life of no free will due to their own physical, psychological or neurological disabilities. How often are they asked how these feel regarding these losses? Rarely unless taken care of by close family or friends, and even then it is variably based on educational resources available to these guardians.
U.S. eugenics advocacy poster from the Philadelphia Sesqui-Centennial Exhibition, 1926, "Transforming Better Babies Into Fitter Families" (2005, Proceedings of the American Philosophical Society 149(2). Steven Selden, Rights to image owned by American Philosophical Society.
The necessity of regarding DD individuals as more than simply lethargic children is dire. The solution is often to lock these children into institutions or specialty schools, out of the general population. Continually children are more medicated than they are nourished with support, because it is easier than addressing the larger picture. The mental health system of the United States continues to falter, leaving many to perish on the streets or crowded institutions.
The process of breathing life back into the once dehumanized is one that will take decades to procure. It begins with treatment on a case by case measure, one person at a time. Through changes in programs and resources, helping the generations of DD children adapt and experience life without the confines of institutionalized medicine. Education of such is absolutely necessary to change hearts.
Developmentally disabled children have brilliant minds that are cluttered with feelings, anxieties and imbalances that can be supported and nourished through support. The seeds of this process begin from the moment they are walking well until they are silver-haired elders. Some of the greatest evil in our world was derived under the United States Eugenics program. This program focused on the retarded and societal undesirables, forcibly sterilizing thousands and institutionalizing millions. It was seen as a community service and purification of the blood lines, done without the incompetent’s permission under the premise they were deemed unfit many were forcibly detained and sterilized.
The definition of Eugenics is as follows, “…eugenics (from Greek, eu, good and gen, produce) is ‘the study of methods of improving the quality of human populations by the application of genetic principles’.” (Gejman, 2002, p. 217) As horrifying as this history is, it was astonishing that this program endured as long as it did within our own country, much less the world.
From the late 19th century to before World War II, eugenics was popular in Europe and the US, and it became an indissoluble component of the official policy of Nazi Germany. Eugenics was taught at the leading universities in the West, and the subject was treated in standard texts of human heredity. In Nazi Germany, eugenics was associated with mass forced sterilization, with the killing of the mentally ill and of others deemed unworthy of life, and with unscrupulous experimentation. (Gejman, 2002, p. 217)
The inevitable downfall to the eugenics movement came shortly after World War II, the Holocaust was seen as a consequence to the movement and became a symbol of racism and evil. Although the broader practice of eugenics diminished over the years, forced sterilization continued in the United States well into the early 1960s before ultimately being halted.
Arguably the eugenics movement has been credited to as a variable resource for the profession of psychiatry. In 1933, Nazi Germany passed the “Law for the Prevention of Genetically Diseased Offspring (which was in fact a sterilization law)” (Gejman, 2002, p.221) under the control of Ernst Rudin.
Thereafter, Rudin set forth to analyze and forcibly sterilize thousands of schizophrenics. “The diagnosis of schizophrenia accounted for about 22-34% of the sterilizations after the German Sterilization Law.” (Gejman, 2002, p. 222) However under this premise, Rudin cultivated the first large-scale family study of schizophrenia. Collecting data on fertility rates of schizophrenics and publishing dozens of studies. Though despite this, the cruelty and brutality of his methods and law provided practices over shadow his findings.
"Portrait of Henry Goddard," from Measuring Minds, Leila Zenderland (Cambridge, 1998) CONTROLLING HEREDITY: THE AMERICAN EUGENICS CRUSADE 1870-1940, CURATORS OF THE UNIVERSITY OF MISSOURI, THE EUGENICS MOVEMENT.
“Henry H. Goddard (1866-1957), a psychologist and the Director of Research at the Vineland Training Schools for Feeble-Minded Girls and Boys in New Jersey, was also well known for his pedigree investigations.” (Gejman, 2002, p.225) Ultimately Goddard’s role was to limit immigration and completely eliminate the immigration of “morons”. Through his biased research he concluded that “unwise” marriages based on hereditary created faulty children and thus tainted bloodlines. Later, Goddard created an IQ test that would be later be implemented at Ellis Island for new arrivals to undergo before they were admitted into the United States. His test, alongside several others, were used for screening of “feeble-minded” individuals or general undesirables. (Minorities, ethnicities, etc.)
The results of this time of madness have been prevalent despite the continued evolvement of the Western world. Although the world of mental health has traveled very far from the days of abuse, sterilizations and neglect it still has many obstacles to overcome.
The ghosts of a troubled past in the field of the developmentally disabled have yet to diminish, with the reconditioned methods of psychological care there will continually be a struggle. The importance of understanding our history regarding treatment of the mentally ill and developmentally disabled is so that we may not repeat it. To understand the devastating blows to those of disability is to understand how far they have traveled and how far they have yet to go.
References
Clinton, T., & Sibcy, G. (2006). Loving your child too much: Staying close to your kids without overprotecting, overindulging, or overcontrolling (p. 162). Nashville, TN: Thomas Nelson.
Cloud, H., & Townsend, J. (1998). Boundaries with kids: How healthy choices grow healthy children (p. 196). Grand Rapids, Michigan: Zondervan.
Gejman, P. V., & Weilbaecher, A. (2002). History of the eugenic movement. The Israel Journal of Psychiatry and Related Sciences, 39(4), 217-31.
Krais, W. A. (1989). The incompetent developmentally disabled person's right of self-determination: right-to-die, sterilization and institutionalization. American Journal Of Law & Medicine, 15(2-3), p. 334.
Sormanti, M., & Ballan, M. S. (2011). Strengthening grief support for children with developmental disabilities. School Psychology International, 32(2), 179-193. doi:http://dx.doi.org/10.1177/0143034311400831
Swank, J. M. (2013). Obstacles of grief: The experiences of children processing grief on the ropes course. Journal of Creativity in Mental Health, 8(3), 235-248. doi:http://dx.doi.org/10.1080/15401383.2013.821922
Tarver-Behring, S., & Spagna, M. E. (2005). Counseling with exceptional children. Counseling and Human Development, 37(9), 1-12.
Williams, K., & Lent, J. (2008). Scrapbooking as an Intervention for Grief Recovery With Children. Journal Of Creativity In Mental Health, 3(4), 455-467. doi:10.1080/15401380802547553
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