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Down Syndrome Neurocognitive Disorders

Social Development and Expression in Down Syndrome

Down syndrome is characterized as a genetic disorder that is associated with the presence of an extra copy of chromosome 21. This extra chromosome is related to how a child with Down syndrome will mature. Children with Down syndrome will learn and physically develop in different ways compared to their peers. However, the social development aspect that develops in these children is a recognizable strength. Whether it comes from observing people interacting on television or from family members, children will mimic certain social behaviors. Social engagement and expression also tends to occur quicker and most children with Down syndrome are often affectionate and friendly. 

The immediate environment that children with Down syndrome are brought up in play a major role in their social development. Children should be encouraged to express themselves to others. Children with Down syndrome possess notable skills involving visual representation and creative expression. Support should be emphasized in early childhood in order for the stigma around Down syndrome to be less pronounced, and for the child to participate in community-based activities without feeling ostracized. Children with Down syndrome demonstrate strong expression through their behavior and interactions with others, but generally have trouble in using language to express themselves. In the beginning stages of social development, parents or guardians are encouraged to assume a significant role in connecting children with others to increase interaction. However, as the child gets older, independence should be fostered so that the child can facilitate their own relationships.

Despite social expression being fostered, social competence in people with Down syndrome is often challenging to progress. This is relevant to difficulty in comprehension of social cues. When facing a frustrating situation, emotional response may be difficult to regulate. In order for such responses to improve, it is important to be candid and limit protective factors. Children with Down syndrome do not have to be excessively monitored because they are capable of their learning through their own abilities. Additionally, they tend to interact better when surrounded with others who have common interests and when activities or playtime is less complex and straightforward. 

Although Down syndrome makes social competence more challenging, it does not mean it is completely impossible to nurture. Jamie Brewer is an actress with Down syndrome who has a successful career playing leads in various genres of plays and films. Brewer played the lead role, and conveyed a multitude of emotions relating to grief and expression. Brewer explains how “individuals with disabilities have different ways of coping with things.” Her disability did not hinder her ability to perform her role, and she embraced her differences in her acting.  Jamie describes herself as an advocate for people with disabilities, showing others the range and possibility of what someone with Down syndrome is capable of. 

Down syndrome is often associated with increased social expression but decreased social competence. Support and accommodation are essential for development in children with Down syndrome. Additionally, individuals with Down syndrome should not be compared to those without it. Their social expression and competence are just presented differently and they are capable of everything those without the disability are. 

 

References

Deb, S. (2018, February 14). A barrier breaks: An actress with Down Syndrome plays the lead. The New York Times. Retrieved October 3, 2021, from https://www.nytimes.com/2018/02/14/theater/amy-and-the-orphans-down-syndrome-jamie-brewer.html. 

Guralnick, M. J., Connor, R. T., & Johnson, L. C. (2011, January 1). Peer-related social competence of young children with Down Syndrome. American journal on intellectual and developmental disabilities. Retrieved October 3, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3898700/. 

Lawler, M., Fontana, S., Upham, B., Phillips, Q., & Dunleavy, B. P. (2018, June 12). How down syndrome affects a child’s growth: Everyday Health. EverydayHealth.com. Retrieved October 3, 2021, from https://www.everydayhealth.com/down-syndrome/what-expect-raising-child/. 

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Down Syndrome

Down Syndrome and Obesity

Obesity has been a rising trend in America (Rubin, Rimmer, Chicoine, Braddock, & McGuire, 1998).  The prevalence of obesity from 2015 to 2016 was 39.8% of the general population, affecting as many as 93.3 million American adults (Center for Disease Control and Prevention, 2018). People who are overweight or obese are at an increased risk for serious health conditions such as Type 2 diabetes, stroke, cardiovascular disease, and other detrimental health conditions (Esposito, MacDonald, Hornyak, & Ulrich, 2012).  It is also one of the leading causes of premature death that could be preventable (Center for Disease Control and Prevention, 2018).

People with Down Syndrome have a higher obesity prevalence than the general population (Rubin et al., 1998).  In the general population in the United State of America, the Centers for Disease Control and Prevention (1997) reported that 33% of males and 36% of females are overweight (Rubin et al., 1998).  Adults with Down Syndrome have a significantly higher prevalence with 45% of males and 56% of females being overweight (Rubin et al., 1998). However, this higher rate of being overweight was not only found in the United States.  More recently, a study conducted in 2009 found that Dutch children with Down Syndrome have “alarmingly high prevalence rates of overweight and obesity during childhood and adolescence” compared with the general Dutch population (Van Gameren-Oosterom, Van Dommelen, Schönbeck, Oudesluys-Murphy, Van Wouwe, & Buitendijk, 2012).  Compared with the general Dutch population, children with Down Syndrome were more often overweight: 25.5% of boys with Down Syndrome were overweight as compared to 13.3% within the general population, and 32.0% of girls with Down Syndrome were overweight as compared to 14.9% within the general population (Van Gameren-Oosterom et al., 2012).  In addition, children with Down Syndrome were also found to have a higher rate of obesity compared to the Dutch general population. 4.2% of boys with Down Syndrome was found to be obese compared to 1.8% of typically developing children and 5.1% of girls with Down Syndrome were found to be overweight compared to 2.2% of typically developing Dutch children (Van Gameren-Oosterom et al., 2012).

Furthermore, it is found that people with Down Syndrome have an increased risk of having diseases related to overweight conditions (Rubin et al., 1998) and this increased risk starts early.  Children with Down Syndrome have a tendency to become overweight and obese and the rates of obesity among this population are much higher than the general population (Murray & Ryan-Krause, 2010).  These individuals have a propensity for obesity and a large amount of abdominal fat storage,and are subsequently at a higher risk for developing Type 2 diabetes mellitus and may be at a higher risk of experience negative physical consequences associated with obesity (Murray & Ryan-Krause, 2010).  People with Down Syndrome have physiological mechanisms that relate to an increased risk for obesity such as hypothyroidism, decreased basal metabolic rate, increased leptin, poor mastication, and decreased resting energy expenditure (Marray & Ryan-Krause, 2010).

Many of these physiological mechanisms can be regulated to decrease an individual’s risk for obesity (Murray & Ryan-Krause, 2010).  Each child is unique, therefore in order to develop an appropriate prevention and management plan that is tailored to an individual child’s needs, a comprehensive assessment of their complete history must be taken (Murray & Ryan-Krause, 2010).  There are many ways to manage weight, such as encouraging increased physical activity, limiting sedentary lifestyles and eating a balanced diet with vitamin and mineral supplements (Murray & Ryan-Krause, 2010). It is important to remember that not all treatments are effective for all individuals and thus the interventions should be specifically tailored for each child with Down Syndrome (Murray & Ryan-Krause, 2010).  

Obesity, one of the leading causes of preventable death, has been increasing in prevalence throughout the years all around the world (Center for Disease Control and Prevention, 2018).  Unfortunately, there are even higher rates in individuals with Down Syndrome (Center for Disease Control and Prevention, 2018). It is important to continue to pursue research in preventing and educating the general population in regards to overweight and obesity by teaching people about proper nutrition and dietary intake as well as the importance of physical activity in daily life.

References

Center for Disease Control and Prevention. (2018). Adult Obesity Facts. Retrieved November 12, 2018, from https://www.cdc.gov/obesity/data/adult.html

Murray, J., Ryan-Krause, P. (2010). Obesity in children with down syndrome: background and recommendations for management. Pediatric Nursing, 36(6), 314-9.

Rubin, S.S., Rimmer, J. H., Chicoine, B., Braddock, D., & McGuire, D. E. (1998).  Overweight Prevalence in Persons with Down Syndrome. Mental Retard, 38, 175-181. doi:10.1352/0047-6765(1998)036<0175:OPIPWD>2.0.CO;2

Van Gameren-Oosterom, H. B., Van Dommelen, P., Schönbeck, Y., Oudesluys-Murphy, A. M., Van Wouwe, J. P., & Buitendijk, S. E. (2012). Prevalence of overweight in Dutch children with Down syndrome. American Academy of Pediatrics, 130(6). doi:10.1542/peds.2012-0886

 

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Down Syndrome

Down Syndrome in Art Forms Throughout the Ages

Art is a very galvanizing force that is often used to represent and preserve a piece of society. It is often examined and analyzed by future historians in centuries to come. An art piece used to encompass the various beliefs and outlooks during the era in which it was created. Throughout the centuries, mental illness have been depicted in a various forms of art, whether in music, the media, or paintings. Down Syndrome is no exception. Even before the official coining of its current name in the early nineteenth century, Down Syndrome has been depicted in different pieces of arts for centuries (Starbuck, 2011 ).  

According to John. M. Starbuck, a Ph.D. candidate in the department of anthropology at Pennsylvania State University, there are many art forms in history that could possibly be depictions of individuals with Down Syndrome in historical cultures.  He believes there is strong evidence that two individuals in the painting The Adoration of the Christ Child (circa 1515 A.D.) were shown to have Down Syndrome.  One individual was drawn with angel wings and the other was an “earthly admirer” (Starbuck, 2011).  They were portrayed with similar facial compositions exhibited by people with Down Syndrome. They had  “flattened midface, epicanthic folds, upslanted palpebral fissures, small and upturned nasal tip, downward curving mouth corners, and short fingers with a widely spaced and curving small finger (Levitas and Reid, 2003)”.  These description are direct features scientists have identified as distinct to those with Down Syndrome. There are two versions of this painting, one in the nighttime and the other in the daytime. Each version had similar individual’s depicted, one with an angelic disposition and the other as a mortal bystander.    

Levitas and Reid, who studied the qualitative facial analysis of individuals in paintings to confirm or deny the possibility of those individual’s as being depicted with Down Syndrome. They concluded, after analyzing and examining the two individuals in the painting, that both individuals may have had Down Syndrome. They speculated that there were three possible reasons why one of the individuals in the painting who may have had Down Syndrome was drawn with such an angelic disposition. The reasons were: 1) the artists may have had warm feelings towards people with Down Syndrome, 2) the artists was depicting people with disabilities for a symbolic purpose such as depicting those with mental illnesses as signs of comedy or evil (Starbuck, 2011), and 3) physical signs of Down Syndrome were not recognized as a disorder at the time of the painting (Levitas and Reid, 2003).

The portrayals of those with disabilities or mental illnesses ranged from symbols of evil and fear to comedy and jest. Some people with disabilities were portrayed as a symbol of evil (Levitas and Reid, 2003). This could be perhaps be indicative of the intrinsic human tendency to fear the unknown. Others depicted those with disabilities as a symbol of comedy (Levitas and Reid, 2003), which could be evidence of a human propensity to judge and ridicule those who are different.

In today’s society, the knowledge of Down Syndrome has spread, with the advent of increased research and awareness. Media portrayals now depict those with Down Syndrome less as a symbol of evil or comedy but more as an exaggerated caricature of their syndrome.  For example, the television reality show, known as the A&E series “Born This Way” features everyday people with Down Syndrome and the lives they live. However, such shows, especially “Born This Way” is criticized for portraying the lives of people with Down Syndrome as  “an overly rosy look at life for adults with Down Syndrome” (Vila, 2016). Such representations of Down Syndrome is quite popular in the media nowadays (Vila, 2016) however it is a step forward in the right direction compared to portrayal of mental illnesses and disabilities as either a joke or a sin. Therefore, the depiction of Down Syndrome in art right now is not ideal, but it has improved over the centuries.   

In the future, with more advancement in science and research, the art representing those who differ from the typically developing person can finally morph into accurate depictions of those with any mental disorder or disability, not just Down Syndrome.  It is crucial to respect and understand people with mental illnesses as individuals and not as a product of their disorder.

References

Levitas, A. S., & Reid, C. S. (2003, February 01). An angel with Down Syndrome in a sixteenth

century Flemish Nativity painting. Retrieved October 19, 2018, from

https://www.ncbi.nlm.nih.gov/pubmed/12522800

Starbuck, J. M. (2011). On the Antiquity of Trisomy 21: Moving Towards a Quantitative

Diagnosis of Down Syndrome in Historic Material Culture. Journal of Contemporary

Anthropology,2(1). Retrieved October 19, 2018, from

https://docs.lib.purdue.edu/cgi/viewcontent.cgi?referer=http://www.downsyndromeprenat
altesting.com/down-syndrome-diagnosis-at-the-adoration-of-the-christ-child/&httpsredir=1&article=1019&context=jca

Vila, V. (2016, January 12). Down Syndrome on TV: Conversations About “Born This Way”.

Retrieved October 24, 2018, from

https://modernmessy.wordpress.com/category/portrayals-of-down-syndrome-in-media/

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Down Syndrome

What is Down Syndrome?

What exactly is Down Syndrome? What makes people with Down Syndrome different than those without Down Syndrome? What makes them the same? What causes Down Syndrome?  What do I do if someone close to me has Down Syndrome? These are often questions that people often ask when they first encounter Down Syndrome.

According to the National Down Syndrome Society, or NDSS, nearly one out of 600 babies born in the United States is born with Down Syndrome. This makes Down Syndrome the “most common chromosomal condition” (What is Down Syndrome, n.d.). If we go by the approximate numbers, each year around 6,000 babies are born with Down Syndrome (What is Down Syndrome, n.d.).  

Down Syndrome had been touched on in different works of art and literature for centuries but it wasn’t until 1866 when a physician, John Langdon Down, published a description of a person with Down Syndrome that the condition was given an official name.  Significantly later in 1959, Down Syndrome was found to be a chromosomal disorder by a physician named Jerome Lejeune. This led to a multitude of advances in Down Syndrome research.

In a normally developing cell nucleus, each parent contributes to half of the 23 chromosomes. Down Syndrome is a chromosomal condition where an individual has a “full or extra copy of chromosome 21” (What is Down Syndrome, n.d.).  

There are three types of Down Syndrome: trisomy 21, mosaicism, and translocation. 95% of those with Down Syndrome has Trisomy 21. Trisomy 21 happens before or during a gamete formation where the spermatocyte and oocyte fails to divide properly during meiosis causing there to be three copies of chromosome 21 instead of the usual two (What is Down Syndrome, n.d.).  The second type of Down Syndrome is relatively rare, making up only 1% of all people with Down Syndrome. It is called Mosaic Down Syndrome. Mosaic Down Syndrome is when a person only has some cells with an extra chromosome 21 and others developed without the extra chromosome (Mayo Clinic, 2018). Therefore in this kind of Down Syndrome, some of the cells have 46 chromosomes and others have 47(What is Down Syndrome, n.d.).  Last but not least, the third type of Down Syndrome is Translocation. Translocation is where some of the chromosome 21 attaches itself, either fully or partially, to another chromosome, usually chromosome 14 (Mayo Clinic, 2018).

Because of this genetic difference and changes in development, there are specific phenotypic characteristics that are associated with Down Syndrome such as “low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm” (What is Down Syndrome, n.d.).  However, each person with Down Syndrome is a unique individual with quirks and interests of their own. Additionally, although they may seem different from us in certain ways, they still experience the same emotions that we do.

How do I know if my baby or someone close to me is born with Down Syndrome? Before a baby is born a mother can take two different types of tests for Down Syndrome.  One is a prenatal screen that only provides the possible estimate of the mothers’ chances of having a baby with Down Syndrome (What is Down Syndrome, n.d.). The second is a diagnostic test performed during the second trimester that can provide a definitive diagnosis of Down Syndrome (What is Down Syndrome, n.d.). At birth, Down Syndrome can be diagnosed through the presence of physical traits characteristic of those with Down Syndrome. In order to confirm whether or not a child has Down Syndrome, a doctor may analyze the chromosomes using a karyotype or a chromosomal analysis.

At this moment, scientists are still unsure of the cause of Down Syndrome. However, what is known is that only 1% of all cases of Down Syndrome has a hereditary component (What is Down Syndrome, n.d.). Scientists have a long way to go in knowing everything about Down Syndrome but they are finding treatments to improve the lives of those with Down Syndrome. The treatment largely consists of therapy, but research is still needed for the expansion of the success of such therapies.   

A genetic component is what makes people with Down Syndrome different than those without the condition. However, besides the extra chromosome in their DNA, people with Down Syndrome are the same as any person out there. Even though many people with Down Syndrome also have a mild to moderate cognitive disability or intellectual disability (Mayo Clinic, 2018), they possess diverse talents as well. People with Down Syndrome are a part of our community and shouldn’t be treated differently because of something they were unable to control. They are our friends, our co-workers, our family, our classmates, and our mentors.  If someone you encounter has Down Syndrome, treat them as anyone should be treated: with respect and dignity. With a little more understanding and a lot more love, step by step, a better world can be created to encompass all people, one extra chromosome or not.

 

References

Mayo Clinic: Down syndrome. (2018, March 08). Retrieved September 30, 2018, from https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

What is Down Syndrome? | National Down Syndrome Society. (n.d.). Retrieved September 30, 2018, from https://www.ndss.org/about-down-syndrome/down-syndrome/

Categories
Down Syndrome Neurodegenerative Disorders

The Link Between Dementia and Down Syndrome

Imagine what it would be like to start to losing the mosaic of memories that makes you who you are.  Imagine what it would be like to wake up in the morning to find out that familiarity escapes your mind’s grasp.  To look at the faces of your family members and loved ones and find nothing- not a spark of intimacy, not an inkling of that warm feeling in your heart that once was tied to memories of your moments with them.  Nothing.

Imagine not being able to remember the way to the restroom in the morning.  What would it be like to suddenly forget which toothbrush is yours? What would it be like to not remember the taste of your favorite meal or forgetting whether or not you’ve eaten that day? Imagine not being able to do the things you have always loved to do, whether it be swimming, photography, art, or something as simple as going up the stairs of your Aunt’s house.  Imagine getting lost on the way home after you go out on a walk, stranded and alone, not knowing your name or who you are. Those with Down Syndrome have a much higher chance to undergo these experiences in their lifetime. The average prevalence rate of Alzheimer’s dementia in people with Down Syndrome is around 15% that increases with age with signs of Alzheimer’s dementia showing over the age of 35 compared to the average early onset of Alzheimer’s dementia at the age of 40 or 50 (Mayo Clinic, 2018; Nieuwenhuis-Mark, 2009).

Research has found that those with Down Syndrome develop Alzheimer’s disease at an average age younger than the mean age for the general population. In a 20-year longitudinal study done by researchers McCarron and Colleagues, following 77 people with Down Syndrome 35 years and older from 1996 to 2015, it was found that 97.4% of those participants developed dementia at a mean age of 55 years old (McCarron et. al., 2017). The manifestation of psychological changes typical of Alzheimer’s disease occur in nearly all persons with Down Syndrome over the 40 years old (Tyler and Shank, 1996).

The symptoms of Alzheimer’s disease are often debilitating and its consequences can be devastating. Researchers William and Lai followed 96 persons with Down Syndrome and non-treatable dementia for 8 years and found that there are three phases of clinical deterioration in these patients. During the initial phases, individuals with high functioning Down Syndrome spoke less, had trouble with their memory, and had feelings of temporarily traveling through time.  Individuals with low functioning Down Syndrome showed: “apathy, inattention, and decreased social interactions” (Tyler and Shank, 1996). During the second phase of dementia, it was noted that those with Down Syndrome had a decline in daily activity performance, deteriorating work performance, and a shuffling gait (Tyler and Shank, 1996). During the second phase, 84% of persons with Down Syndrome also experience tonic-clonic seizures, which cause body stiffness and convulsions.  During the final phase of dementia, those with Down Syndrome stopped walking and lost voluntary control over their urination and defecation, and they passed away typically within 3 to 5 years of the onset of their dementia (Tyler and Shank, 1996). This is quicker than individuals without Down Syndrome, who have later ages of dementia onset and slower rates of deterioration (Tyler and Shank, 1996).

The importance of research is tantamount in the fields of medicine and psychology to diagnose, understand, and eventually treat such cases.  However, Down Syndrome is the least funded, yet most frequently occurring, chromosomal disorder by the National Institute of Health (Facts and FAQ, 2018). In 2010, Down Syndrome Research Funding took up only 0.0009% of the total NIH Budget of $30,860 million (Research for People, 2018).  It is astounding how little is paid to research for such a prevalent genetic disorder.

However, there is hope.  More research has been done on the association between dementia and Down Syndrome as well as the diagnoses and interventions.  There are now interventions to increase an individual with Down Syndrome’s quality of life and maximize their strengths to help them adjust to their changing abilities and needs and live more comfortably by reducing behavioral disturbances (Nieuwenhuis-Mark, 2009).  As quoted by Niewenhuis-Mark in their article, “the development of dementia of Alzheimer type is frequent but not inevitable, and some people with DS reach old age without clinical features of dementia” (Nieuwenhuis-Mark, 2009).  

Not everyone with Down Syndrome will develop Alzheimer’s dementia in old age, therefore research, understanding, and diagnosis is extremely crucial and time sensitive.  

References:

Facts and FAQ About Down Syndrome. (2018, August 17). Retrieved from https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/?gclid=EAIaIQobChMIiNfm6vi93QIVhB-GCh02KgO-EAAYASAAEgLdz_D_BwE

Mayo Clinic. (2018). Early-onset Alzheimer’s: When symptoms begin before age 65. [online] Available at: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356  [Accessed 22 Sep. 2018].

McCarron, M. m., McCallion, P., Reilly, E., Dunne, P., Carroll, R., & Mulryan, N. (2017). A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome. Journal Of Intellectual Disability Research, 61(9), 843-852. doi:10.1111/jir.12390

Research for People with Down Syndrome: National Institutes of Health Funding. (2018, March 28). Retrieved from https://www.globaldownsyndrome.org/research-for-people-with-down-syndrome-national-institutes-of-health-funding/

Nieuwenhuis-Mark, R. E. (2009). Diagnosing Alzheimer’s dementia in Down syndrome: Problems and possible solutions. Research in Developmental Disabilities,30(5), 827-838. doi:https://doi.org/10.1016/j.ridd.2009.01.010

Tyler, C. V., Jr., & Shank, J. C. (1996, June). Dementia and Down syndrome. Journal of Family Practice, 42(6), 619+. Retrieved from http://link.galegroup.com/apps/doc/A18448466/AONE?u=sunysb&sid=AONE&xid=05d53866

Categories
Down Syndrome

Music: A Melodic Therapy for the Mind

Music has always popularly been viewed as an emotional medium. It affects our mood, emotions, and feelings, but on the contrary, can also affect our brain function. The Frontiers in Neuroscience states that music production is “ a highly complex task that requires the human brain to strongly link perception and action.” Creating music is not only beneficial for one’s motor skills and creativity but can also amplify cognitive development. It has been used in a number of treatments for mental and neurological illnesses, one of which is Down Syndrome.

Individuals with Down Syndrome experience delays in cognitive functions such as speech and language development. Children with down syndrome have difficulties with auditory perception and processing, issues with articulation, and struggle to learn language rules. Some may even experience hearing loss, visual defects, or motor delay. However, music therapy has been used to help children with disabilities for the past four decades (Pienaar, 2012). Rhythm, melody, harmony, pitch, loudness, and sound are essential parts of music that can be integrated into speech-language programs for those with down syndrome.

Communication involves speech, gestures, facial expressions, eye contact, and tone. Music therapists perceive communication and social interaction as essential to therapy, especially for those who find verbal language and a means of expressing themselves challenging.  Early intervention programs such as music therapy have shown to be successful in promoting language and reading development. People with Down syndrome often have difficulty articulating personal narratives. Personal narratives are described as “descriptions of past events that have been experienced by the speaker and are one of the most frequently used and earliest developing types of narration in children with typical language development” (Finestack et al., 2017). Children are expected to be capable of producing personal narratives by the time they enter the school system (Finestack et al., 2017). An advantage of music therapy for people with down syndrome is that they are given a nonverbal medium with which they can express emotions and ideas.

The gateway for using music for medical, therapeutic, and scientific methods is just being discovered. With further contributions and advances, we may see more mental and neurological illnesses such as Down Syndrome treated with the aid of music. Down Syndrome Education International provides a number of resources on their site concerning opportunities for people with down syndrome to enroll in music or dance programs.

References:

Finestack, L. f., O’Brien, K. H., Hyppa-Martin, J., & Lyrek, K. A. (2017). The Evaluation of a Personal Narrative Language Intervention for School-Age Children With Down Syndrome. American Journal On Intellectual & Developmental Disabilities, 122(4), 310-332. doi:10.1352/1944-7558-122.4.310

Pienaar, D. (2012). Music Therapy for Children with Down Syndrome: Perceptions of Caregivers in a Special School Setting. Kairaranga, 13(1), 36-43.

Paquette, S., & Mignault Goulet, G. (2014). Lifetime benefits of musical training. Frontiers in Neuroscience, 8, 89. http://doi.org/10.3389/fnins.2014.00089

Categories
Down Syndrome

A Reflection of Day and Night: Down Syndrome and Sleep

“But I’m not tired” is a common sentence heard by parents as they attempt to tuck their children into bed after a long day. As your child grows up, this phrase may be heard less and less throughout the years. However, for people with Down Syndrome (DS), there may be little change to no change when it comes to not being tired. Complications from DS can make it difficult to enjoy a quality night of sleep.

Sleep problems have been widely reported in children with DS, with over 85% of school-aged children experiencing clinical symptoms of sleep problems (Lukowski & Milojevich, 2017). In a study conducted by Nicole M. Phillips, MD, from the University of Michigan, children with Down Syndrome have more instances of fragmented sleep and frequent awakenings compared to children who do not possess DS. Children with DS also have lower sleep efficiency, fewer total hours of sleep, less REM sleep, and spend more time in a lighter sleep stage than those without DS. A decrease in the quality and amount of sleep can further impair cognitive, behavioral, and physical growth that is already present in DS children (American Academy of Sleep Medicine, 2017).

Children with Down Syndrome often suffer from sleep-disordered breathing such as snoring or sleep apnea because of hypotonia, upper airway restriction and the placement of the tongue. They are also more likely to suffer from sleepwalking, sleep anxiety, and insomnia. Sleep-disordered breathing results in multiple brief sleep disruptions or fragmentations that can reduce the restorative function of sleep and, as a result, increase daytime fatigue (Lukowski & Milojevich, 2017). This fatigue impacts a person’s attentiveness and cognitive abilities during the day. The Journal of Intellectual Disability Research reports that a lack of sleep can also lead to a decrease in physical activity which can lead to obesity, a prevalent feature in those with DS (Chen & Ringenbach, 2018).

Although children and infants have an occasional bout of sleeplessness, these issues decline over time. The same cannot be said for children with DS. Complications for those with down syndrome often create restless nights no matter how tired one is.

References:

American Academy of Sleep Medicine. (2017, November 08). Children with Down syndrome sleep poorly, have more fragmented sleep. https://aasm.org/children-with-down-syndrome-sleep-poorly-and-have-more-fragmented-sleep/

Lukowski, A. F., & Milojevich, H. M. (2017). Sleep problems and temperament in young children with Down syndrome and typically developing controls. Journal Of Intellectual Disability Research, 61(3), 221-232. doi:10.1111/jir.12321

Chen, C. J., & Ringenbach, S. R. (2018). Walking performance in adolescents and young adults with Down syndrome: the role of obesity and sleep problems. Journal Of Intellectual Disability Research, 62(4), 339-348. doi:10.1111/jir.12474

Categories
Down Syndrome

Representation of Down Syndrome in the Media

On February 7th, Gerber announced that their new “spokesbaby” will be Lucas Warren. Lucas will be Gerber’s first spokesbaby to possess down syndrome in the brand’s 91-year history. Bill Partyka, chief executive and president of Gerber, said, “Every year, we choose the baby who best exemplifies Gerber’s long-standing heritage of recognizing that every baby is a Gerber baby,” (Klein, 2018). Representation of down syndrome is essential as it provides an opportunity for the public to gain more insight into the disorder. Not only that, but it also allows people with down syndrome to be seen as individuals rather than a group or stereotype.

Those with down syndrome have often been narrowly viewed as compassionate, helpless, and oblivious. BBC Three recently did a segment titled “Things People With Down Syndrome Are Tired of Hearing,” which covers the various stereotypes associated with down syndrome. This includes the beliefs such that adults with down syndrome act like children, people with down syndrome can’t live independently, and people with down syndrome can’t hold down jobs. The lives of those with the illness have changed in many ways as a result of medical and social advances. This change incorporates the hiring of special education teachers and new treatments that alleviate the physical obstacles that come along with down syndrome. Journalist, David Perry speaks against the two-dimensional view of down syndrome. When strangers or even relatives learn that Perry’s son has down syndrome, they often say things like “‘Downs kids’ are God’s angels sent down to Earth” (Perry, 2012). While Perry agrees that people with down syndrome can be amicable and cordial, he knows that his child is no angel; he’s just like any other kid. He asserts, “Most parents who have spent time changing diapers, dealing with tantrums or trying to get a sleepy child, with or without Down syndrome, getting him/her ready for the school bus in time know that ‘angel’ doesn’t always cut it” (Perry, 2012). In the past few years, there have been shifts in the representation of down syndrome in the media. The television series Life Goes On was the first major series to have the main character played by someone who possesses down syndrome. The show’s central character, Corky, is an 18-year-old teenager in high school. He undergoes heartbreak, difficulties studying, and social pressures like any other student (Gee, 2012). Another portrayal of the illness includes the musical-comedy Glee. The show possessed a major supporting character who had down syndrome and went against many stereotypes. Not only was she independent, but she pursued a relationship, and also possessed a fierce personality.  

The way that down syndrome is represented in the media shapes how we view the people who possess it. Lucas’s mother says, “We know Gerber chose him [Lucas] because of his cuteness, but it also is spreading awareness of acceptance of people with disabilities of all kinds. No matter if we have a disability or not, we’re all just humans” (Klein, 2018). Although people like Lucas are impacted by Down syndrome, it is important to think of them as individuals over their syndrome. While the portrayal and representation of people with down syndrome are expanding and changing, there are still a number of stereotypes and misconceptions being perpetuated about the syndrome.

References:

Gee, C., & Everbach, T. E. (2012, December). Down syndrome and self-esteem: the media’s portrayal of self-esteem in characters who have Down syndrome. University of Northern Texas. https://digital.library.unt.edu/ark:/67531/metadc177198/m2/1/high_res_d/thesis.pdf

Klein, A. (2018, February 08). Lucas was just named 2018 Gerber baby. He has Down syndrome. https://www.washingtonpost.com/news/inspired-life/wp/2018/02/07/lucas-was-just-named-2018-gerber-baby-he-has-down-syndrome/?utm_term=.f3a348b8f3f4

Perry, D. M. (2012, November 17). Don’t label people with Down syndrome. Retrieved March 07, 2018, from https://www.cnn.com/2012/11/16/opinion/perry-down-syndrome/index.html

Categories
Down Syndrome

Looking Towards the Future: Employment for People with Down Syndrome

Three years ago I began my undergraduate career at a university uncertain about what I wanted to study. My family chastised my indecisiveness and would frequently question me regarding my major and job prospects. A child’s development is a crucial concern for parents. Questions flow through their mind constantly. Will my child be healthy? Will they be happy in the future? Am I doing enough to support them? How are they going to turn out? This can be inherently stressful for parents who have children with down syndrome.

People with down syndrome may possess a number of health complications including heart and gastrointestinal defects, immune disorders, sleep apnea, and obesity. Along with the physical difficulties, those with down syndrome moderate cognitive impairment, language difficulties, and memory issues. In a 2016 survey conducted with 511 adults with down syndrome, it was found that along with high unemployment, a large number of people with down syndrome were limited to working in food, janitorial, landscaping, and office sectors of work (Kumin and Schoenbrodt, 2016).

However, despite the challenges that those with down syndrome face, employment and success are not unattainable. A mother from the Institutes for the Achievement of Human Potential spoke about her daughter Mila, who has down syndrome. The first few weeks following Mila’s birth was filled with emotional turmoil; doctors diagnosed her with a congenital heart defect. Her mother immediately addressed issues with Mila’s physical and mental development including, treatment for her heart condition, enrolling her in reading programs, exercising with her, and teaching her foreign languages. Despite being five, she is now able to read at the level of an eight-year-old. There are also instances where people with down syndrome who strive on to become business owners, politicians, or entrepreneurs. In January of 2018, a story was done by BBC regarding John Cronin, an entrepreneur possessing down syndrome. Cronin began a business selling socks with a portion of the proceeds going to charities that support those with disabilities.

The future can be daunting for any parent, child, or adult. It is important that we acknowledge that those possessing down syndrome are capable of living fulfilling and enriching lives, despite the physical and mental complications they possess. As Mark Cronin, father of John Cronin stated “, When I talk to employers I tell them it is absolutely imperative that they hire people with disabilities. Not because it’s the right thing to do, not because they’re nice guys, but because everybody is looking for good workers. This is a vast, untapped pool of great workers.”

References:

The Institutes for the Achievement of Human Potential. (2017, March 7). Down Syndrome Success Story: Mila.  https://www.iahp.org/down-syndrome-success-story-mila/

Mayo Foundation for Medical Education and Research. Down syndrome. (2018, February 01).https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

Cheetham, J. (2018, January 13). The million dollar sock entrepreneur with Down’s syndrome. http://www.bbc.com/news/business-42353259

Kumin, L., & Schoenbrodt, L. (2016). Employment in Adults with Down Syndrome in the United States: Results from a National Survey. Journal Of Applied Research In Intellectual Disabilities, (4), 330. doi:10.1111/jar.12182

Categories
Down Syndrome

False Images: A Case of Down Syndrome and Mental Illness

Small chin. Slanted eyes. A tender and pleasant smile. When you type “down syndrome (DS)” into any search engine, these are the first images you see. You find yourself engrossed in photos of jovial men, women, and children. These images etch the impression that those with down syndrome are carefree, innocent, and cheerful in our minds. Very few photos will portray any negative emotions such as anger, sadness, or guilt. Some may even be surprised to found out these cheerful faces plastered in photos, may have mental illnesses.

The National Down Syndrome Society reports that approximately half of those who possess DS face a mental health issue throughout their lifetime. The most common issues include generalized anxiety disorder, obsessive-compulsive disorder, sleep-related difficulties, and depression, among many others. People with down syndrome who possess severe limitations in terms of language and communication skills may find it difficult to articulate their feelings. This increases the difficulty of diagnosing and identifying mental illness in those with DS.

A metacognitive study analyzing over 390 articles concerning depression and down syndrome states several risk factors that are associated with those born with DS. A study of the general population has shown that those with a smaller total brain volume are more likely to develop depression. The same results were found with those who have lower IQ scores (Walker et. al,  2011).

Diane Levine has a son named Cooper, who has down syndrome has always had the illness define who he is. During a conversation with friends discussing their children, one of them will say something along the lines of,  “My neighbor has a little Down’s boy. They’re such angels, aren’t they?” or I love children with Down Syndrome. They’re like gentle lambs (Levine, 2017).” The picture of people with DS being gentle and delightful is not always the case. People with DS have a range of personalities and emotions; just like those without DS. Levine reiterates “I don’t want Down syndrome to define him — except it does, in many ways.”

The image that we have of those who possess down syndrome is a bright and infectiously happy face. However, this falsely paints people with DS as being free of worries or problems. It is important to acknowledge that people with DS are susceptible to mental illnesses just like those without DS.

References:

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Levine, D. (2017, April 28). My Son With Down Syndrome Does Not Fit Your Stereotype. https://themighty.com/2017/04/my-son-with-down-syndrome-does-not-fit-your-stereotype/

Munir, K. (2018). Mental Health Issues & Down Syndrome. https://www.ndss.org/resources/mental-health-issues-syndrome/

Walker, J. C., Dosen, A., Buitelaar, J. K., & Janzing, J. E. (2011). Depression in Down Syndrome: A Review of the Literature. Research In Developmental Disabilities: A Multidisciplinary Journal, 32(5), 1432-1440.