Cook-Down Syndrome-Blog 5

Down Syndrome

Down syndrome is a genetic disorder caused by the presence of a third chromosome 21 in a person's DNA sequence (Akhtar & Bokhari, 2023). Down syndrome is known to cause characteristic facial features, mild intellectual disability, and developmental delays. Each person with Down syndrome is different though in the challenges they face and the solutions available to them as the experiences and functioning of every person differs. 

Challenges and Solutions

People with Down syndrome may face a variety of challenges associated with having this disability. Individuals with Down syndrome may have mild intellectual challenges associated with verbal memory, expressive communication, and attention span that can cause developmental delays as these individuals may learn slightly slower (Akhtar & Bokhari, 2023). Early interventions can be one solution to these challenges (Piatti et al., 2022). Early interventions typically focus on improving a child's cognitive functioning or motor development, which can then improve developmental outcomes and motor functioning. Early interventions are proven to help improve the neurocognitive outcomes of children with Down syndrome and to aid in helping children meet important developmental milestones. Early intervention programs can include special educators, speech therapists, occupational therapists, physical therapists, and social workers (Office of Communications, 2023). 

It is also important to note that individuals with Down syndrome tend to face communication challenges (Hendrix et al., 2021). Communication challenges result from deficits in expressive communication. Individuals with Down syndrome have very few if any challanges in receptive communication, but expressive communication can pose challanges. Expressive communication includes the ability of a person to tell stories, label things in their environments, answer questions, describe events, and create stories. Individuals may have trouble expressing their emotions and easily become frustrated when they are misunderstood, which can be further worsened if a person does not take the time to try and understand them. Solutions to communication-related challanges can include speech-language therapy to improve communication skills, occupational therapy for teaching adjustment skills, and emotional or behavioral therapies to cope with frustrations (Office of Communications, 2023). With that said, the most significant challenges related to communication are the barriers posed by society and the stigma towards the disorder. Individuals with Down syndrome are often misunderstood which creates challenges for them. 

Another challenge for someone with Down syndrome can be musculoskeletal problems (Hendrix et al., 2021). People with Down syndrome may be born with poor muscle tone and loose joints, which can make participating in physical activity more challenging as someone with this disability may need to put in extra time to strengthen their muscles. The poor muscle tone in babies with Down syndrome can help explain why children may be delayed in meeting developmental milestones related to motor functioning early on. Down syndrome can cause muscle hypotonia and joint laxity. These issues can lead to a person not wanting to engage in physical activity which can heighten their risk for obesity, heart disease, Type 2 diabetes, cancer, and osteoporosis. To counter these challenges the best solution for someone with Down syndrome is to engage in physical therapy or exercise daily, which can be done at home or overseen by a professional to ensure that the exercise plan is realistic and safe (Rodrigues Melo et al., 2022). In particular, resistance training can be very beneficial for someone with Down syndrome. Resistance training forces a person to make their muscles work against a weight, which helps to strengthen them. Resistance training is shown to improve muscle strength, body composition, functional capacity, balance, reduce inflammatory status and oxidative stress, and improve the immune system of people with Down syndrome.  Individuals should be careful to not overwork themselves to avoid causing injury and keep their activity levels appropriate. 

When discussing the challenges associated with Down syndrome it is important to note these challenges do not define the person. Watch the following clip to learn a little more about people with Down syndrome: 

Challenges and Issues for Family Members

Caring for someone with Down syndrome can be a great experience for the family, but may be associated with certain challenges and issues. Parents of children with Down syndrome report major stress associated with the challenge of how to best care for a child with Down syndrome and find quality service centered on a person's educational needs (AlShatti et al., 2021). Affordable and quality services that can be easily accessed are vital for decreasing the socioeconomic and psychological burden of families.  A lot of parents do not know where to begin when told their child will have Down syndrome which creates unnecessary issues that could be solved if the family were to have a support person and access to resources on Down syndrome early on. Parents need to be able to plan and prepare for a child with Down syndrome in order to accept the diagnosis and reduce their anxiety over it. Siblings report that one of the most challenging aspects of having a family member with Down syndrome can be navigating care and social services (Sciscione, 2021). Families could benefit from education on navigating the social service system prior to jumping into it. Meeting the needs of a person with Down syndrome as they age can be challenging as there can be various health concerns that arise and the risk of weakened immune systems makes it challenging for family members to provide care. Caregiving in any context places stress on a person and can be time-consuming. Caregivers should work to establish why they find providing care to a family member valuable to reduce the burden.

There can also be social and emotional challenges for family members of a person with Down syndrome. Individuals with Down syndrome may have attention problems, frequently engage in self-talk out loud, show difficulties with communication, and act in compulsive ways (Bhatia et al., 2005).  Additionally, individuals with Down syndrome may show behavioral issues related to noncompliance and anger management. Behavioral therapy may help to alleviate some of the challenges associated with this situation. Another important challenge to consider for family members, as well as the individual with Down syndrome, is social stigma related to Down syndrome.  Individuals may treat not just the person with Down syndrome differently, but also their family members in a process called courtesy stigma (Watanabe et al., 2022). Stigma can include various forms of prejudice, discrimination, bias, and stereotyping. For example, family members may be pitied or regarded as saints for coping with what others perceive as a challenging situation. Stigma can be damaging to a person with a disability as well as their family members.  In order to decrease the stigma attached to Down syndrome it is important to increase people's awareness of the disability by fostering greater understanding in the public of what having Down syndrome means. 

For a more personal perspective on the topic please watch the following video describing the challenges faced by individuals with Down syndrome and their family members:

Issues in Societal Areas and Solutions (accommodations)

Individuals with Down syndrome may encounter a variety of issues in societal areas such as school and work. At school, children may struggle with certain motor-related activities. Individuals may have trouble with gross motor skills such as those related to using materials like glue or scissors and performing self-care tasks such as tying shoes (Daunhauer et al., 2014). These issues can be solved as a child develops or through physical therapy opportunities that can help increase motor control. Children with Down syndrome may meet developmental milestones late, but when they do meet milestones they maintain competence in these areas once the skill has been gained. Another issue for children with Down syndrome in the school setting is linguistic skills and verbal communication. Children with this disability may struggle with written and oral assignments as well as have issues thinking abstractly (Carbone et al., 2023). Early intervention is an important solution in addressing issues related to the linguistic and verbal skills of children with Down syndrome. Teachers may need to keep lessons realistic in order to accommodate and promote the learning of students with Down syndrome due to their struggles with abstract learning. Accommodations such as special lessons, time with specialized teachers who are educated in teaching children with disabilities, and extra time on assignments may also be useful for a student with Down syndrome. Carbone et al. (2023) note that a lot of teachers are poorly equipped to handle students with disabilities and that when specialized teachers are brought in there is often a lack of communication between the teachers involved. This issue cannot be easily addressed as it would require creative solutions such as changes in teacher training or the implementation of school-wide staff programs teaching about disabilities. teachers should have access to a variety of resources and training opportunities that allow them to learn how to accommodate the needs of students with Down syndrome. 

See the link below for additional information for educators:

Down Syndrome Factsheet (for Schools)

There can also be challenges for individuals with Down syndrome when in a work setting. Approximately 57% of people with Down syndrome hold jobs, while many more hope to as being a part of the labor force is an important way for people to give back and show their independence (Kumin & Schoenbrodt, 2015). For many people with Down syndrome, the desire to work is present, but there may be barriers preventing them from working. Some of the major issues people with Down syndrome face in work settings are negative attitudes compounded with low expectations, lack of opportunities and training, transportation issues, and a lack of accommodation. Potential accommodations that may aid someone with Down syndrome include providing physical accommodations in the form of making sure buildings are accessible, allowing flexible scheduling, providing additional time for tasks assigned, and job coaching.

Mainstreaming the Child/Adolescent

It is important that children and adolescents with Down syndrome are integrated into the mainstream classroom structure the same as any other student. An important factor in integrating a student with Down syndrome into the classroom structure can be a teacher's attitude (Boundy et al., 2023). Teachers have the power to influence their students, so an inclusive environment often starts with an inclusive attitude from the staff involved in the child's education. The presence of a teacher assistant can also be useful in helping to integrate a student with a disability into a class structure as teaching assistants may be able to provide additional support. However, in order to fully mainstream a student with Down syndrome into the classroom structure it is important that their specific learning characteristics are considered in terms of their strengths and weaknesses. Children with Down syndrome may need extra support in some areas, which teachers should be mindful of. Children with Down syndrome can benefit from inclusion in the structure of mainstream class in many ways. Children with Down syndrome who participate in mainstream education develop greater expressive language skills, communication skills, and literacy skills than children with Down syndrome who were only schooled in a specialized class (Buckley et al., 2006). Additionally, children with Down syndrome in mainstream classes tend to develop fewer behavioral issues than children educated in specialized classes. Therefore, mainstream education is the optimal choice for a child with Down syndrome. 

Societal Awareness and Accommodations 

At this point, it is imperative to consider why it is important that society be aware of those with disabilities and implement accommodations for them. Disability awareness is vital for diminishing stigma, facilitating inclusion, and fostering equality (Marini & Stebnicki, 2018). Being aware of a person's disability and the meaning their disability has for them is not enough on its own as it is also important that equity is established within society through the provision of accommodations. Disability recognition is vital as nearly a quarter of Americans have some form of disability (Disability Inclusion, 2020). In order to ensure that individuals with disabilities are able to achieve the same quality of life as people without disabilities it is essential that those within the public are aware of disability perspectives and willing to advocate for the necessary accommodations. Individuals with disabilities face many disadvantages within society due to stigmatizing attitudes and inhospitable environments that limit accessibility.  For a person without a disability, there is no question of whether they will be able to enter a business, apply for a job, or even shop at a store in their mind. However, for individuals with disabilities, these are daily concerns.  Some people with disabilities have to wonder if they can access a building to enroll in services they need or find housing, have to worry if employers will perceive them as capable, and have to face stigmatizing attitudes and pity every time they go out. Providing accommodations is essential for facilitating social inclusion and thus fostering social awareness of disability. People cannot be aware of the needs of those with disabilities unless they include them in society. There exists a lot of misunderstandings about people with disabilities that could be clarified with social awareness. Social awareness/accommodations for those with disabilities go hand in hand and offer a more promising future full of diversity and opportunity. 

References

Akhtar, F., & Bokhari, S.R.A. (2023). Down syndrome. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK526016/

AlShatti, A., AlKandari, D., AlMutairi, H., AlEbrahim, D., AlMutairi, A., AlAnsari, D., Abduljaleel, L., AlEnzi, H., AlFoudari, L., AlShaib, H., AlAzmi, K., & Ahmed, J. (2021). Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: A qualitative study. International Journal of Developmental Disabilities, 67(5), 381-390. https://doi.org/10.1080/20473869.2021.1910780

Bhatia, M.S., Kabra, M., & Sapra, S. (2005). Behavioral problems in children with Down syndrome. Indian Pediatrics, 42(7),675-80. https://pubmed.ncbi.nlm.nih.gov/16085968/

Boundy, L., Hargreaves, S., Baxter, R., Holton, S., & Burgoyne, K. (2023). Views of educators working with pupils with Down syndrome on their roles and responsibilities and factors related to successful inclusion. Research in Developmental Disabilities, 142, 104617. https://doi.org/10.1016/j.ridd.2023.104617

Buckley, S, Bird, G, Sacks, B, and Archer, T. (2006) A comparison of mainstream and special education for teenagers with Down syndrome: Implications for parents and teachers. Down Syndrome Research and Practice, 9(3), 54-67.https://doi.org/10.3104/reports.295

Carbone, A., Castaldi, M., & Szpunar, G. (2023). The relationship between teachers and pupils with Down Syndrome: A qualitative study in primary schools. Behavioral Sciences, 13(3). https://doi.org/10.3390/bs13030274

Daunhauer, L. A., Fidler, D. J., & Will, E. (2014). School function in students with Down syndrome. The American Journal of Occupational Therapy, 68(2), 167-176. https://doi.org/10.5014/ajot.2014.009274

Disability inclusion. (2020). The Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/disability-inclusion.html

Jeff Jones. (2009). We're more alike than different [Video] YouTube. https://www.youtube.com/watch?v=-cA3t1HW1Ow

Hendrix, J. A., Amon, A., Abbeduto, L., Agiovlasitis, S., Alsaied, T., Anderson, H. A., Bain, L. J., Baumer, N., Bhattacharyya, A., Bogunovic, D., Botteron, K. N., Capone, G., Chandan, P., Chase, I., Chicoine, B., Cieuta-Walti, C., DeRuisseau, L. R., Durand, S., Esbensen, A., & Yi, J.S. (2021). Opportunities, barriers, and recommendations in down syndrome research. Translational Science of Rare Diseases, 5(3-4), 99. https://doi.org/10.3233/trd-200090

Kumin, L., & Schoenbrodt, L. (2015). Employment in adults with Down syndrome in the United States: results from a national survey. Journal of Applied Research in Intellectual Disabilities,9(4), 330-45. https://doi.org/10.1111/jar.12182

Marini, I., & Stebnicki, M. A. (2018). The psychological and social impact of illness and disability, (7th ed.). Springer Publishing.

[Photograph of a child with Down syndrome in physical therapy]. (n.d). https://www.savannahnow.com/story/news/2015/07/21/camp-buddy-helps-savannah-area-children-down-syndrome-work-school-skills/13575656007/

[Photograph of a student with Down syndrome in class]. (n.d.). https://www.downs-syndrome.org.uk/news/news-research/dsa-news/educating-our-children-are-things-slipping/

Piatti, A.E., Stefani, B., Bini, G., & Bargagna, S. (2022). Multidisciplinary early intervention in Down syndrome: a retrospective study. Minerva Pediatrics, 7(6). https://doi.org/10.23736/s2724-5276.22.06797-0

Powell-Hamilton, N. (2022). Down syndrome factsheet (for Schools). Kid's Health. https://kidshealth.org/en/parents/down-syndrome-factsheet.html?ref=search

Office of Communications. (2023). What are common treatments for Down syndrome? National Institute of Health. https://www.nichd.nih.gov/health/topics/down/conditioninfo/treatments

Open Future Learning. (2019). A day in the life [Video]. YouTube. https://www.youtube.com/watch?v=j-kDsBrHAYs

Rodrigues Melo, G. L., Neto, S., Stone, W., & Nascimento, C. (2022). Resistance training and Down Syndrome: A narrative review on considerations for exercise prescription and safety. Frontiers in Physiology, 13. https://doi.org/10.3389/fphys.2022.948439

Sciscione, P. (2021). The Experience of caregiving for an adult sibling with Down syndrome. Home Health Care Management & Practice. https://doi.org/10.1177/10848223211027861

Watanabe, M., Kibe, C., Sugawara, M., & Miyake, H. (2022). Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage. Journal of Genetic Counseling, 31(3), 746-757. https://doi.org/10.1002/jgc4.1541