Cook- Down Syndrome- Blog 3

Review: What is Down syndrome? 

Down syndrome is a genetic disorder most typically caused by the formation of a third chromosome 21 in every cell in a person's body (Kazemi et al., 2016). Down syndrome can cause physical disability as well as mild to moderate physical and intellectual developmental delays. 

Introducing Kelly Fitzgerald

Kelly Fitzgerald is a woman with Down Syndrome (Attitude, 2009). Kelly shares her experience with Down syndrome in order to normalize the disability as she hopes to change people's views and establish herself as the same as anyone. Kelly describes that growing up she never viewed herself as disabled and her family did not treat her as such. Her family gave her equal opportunity to participate in things growing up and encouraged her to do only what she could manage with her own effort. Kelly does not receive special treatment but works for what she wants like anyone else. Kelly describes that her life is good and that she is slowly achieving all of her life goals. Kelly fought hard to become one of the only two people with Down Syndrome in New Zealand to have a license. Kelly's perspective is very important to consider and can help individuals without Down syndrome to understand the diagnosis a little better. 

Please see the video below to learn more about Kelly and her experience with Down Syndrome:

Self-Concept and Perceptions

A self-concept refers to the way a person constructs their sense of identity based on the beliefs they hold about themselves (Marini & Stebnicki, 2018). A person's self-concept is essentially how they perceive themselves.  Self-perceptions include one's self-concept and the overall judgments a person makes about themselves and their worth. Every person develops a self-concept early on and begins forming self-perceptions, but for people with disabilities, their self-concept and perceptions can be challenged by the way others respond to them. Children with Down syndrome tend to have self-concepts similar to children without Down syndrome (Saha et al., 2014). Children conceptualized themselves as normal and in ways consistent with societal norms rather than as disabled. A study not too long ago found that children with Down syndrome generally have positive self-perceptions (Skotko et al., 2011). In an interview of 284 children with Down syndrome approximately 99% indicated being happy with their life and 97% indicated positive thoughts towards their appearance. A positive self-concept is thought to be linked to a greater quality of life, which would indicate Kelly's quality of life is pretty high. Kelly indicated a similar pattern in her self-concept and the way she perceived herself. Kelly's self-concept was composed of her positive self attributes such as her motivation, drive, and skills.  Kelly perceived herself as a good driver, pool player, and motivated worker. Kelly did not view Down syndrome as a major part of her self-concept and instead viewed it as a very minor part. However, a person's self-concept and way of perceiving themselves can change over time and be influenced by the social situation. A person's self-concept and perceptions can influence their ability to cope with disability. 

Please watch this brief emotional video by an advocate for those with Down Syndrome to explore a little more about self-concepts and the experiences of people with Down syndrome: 

How Does This Affect Those Coping with Down Syndrome?

Those coping with a disability like Down syndrome often face stigma and discrimination. The way individuals with a disability view themselves versus how society does often differ. People tend to perceive individuals with disabilities as being different on account of their disability, which can lead to them over-emphasizing the person's disability (Marinin & Stebnicki, 2018). For individuals with low self-esteem, this can negatively impact their self-concept and only serve to oppress those with disabilities. After repeated social interactions like this a person's self-perceptions can become eroded. Self-esteem and thus one's self-concept are correlated (Jung et al., 2022). A person's self-esteem influences their coping ability. Acceptance of one's disability leads to greater self-esteem, which serves as a buffer against stigma and negative social interactions. Kelly's coping shows this pattern. Kelly developed a strong self-concept and a healthy level of self-esteem as she was treated in a way that respected her individual characteristics rather than focused on her disability. When Kelly faces stigma it may challenge her self-concept, but she will likely be able to cope with this challenge as she perceives herself as more than her disability. For example, Kelly's mother described that when faced with a challenge Kelly would always think I can do it rather than dwell on the fact that her disability may make her less capable. Societal views may stigmatize Kelly as less capable, but her own views do not as Kelly lets herself be the only one that gets a say in what she can or cannot do. People may have negative and positive aspects of their self-concept at any time that affect their ability to cope with reality. Other people with Down syndrome may cope differently than Kelly. 

How Down Syndrome Impacts Physical Development

Down syndrome can impact physical development in a couple of ways. Children with Down syndrome typically develop distinct features associated with the disability, but their actual physical development may also vary.  Children with Down syndrome tend to have low muscle tone, which can make maintaining physical activity and meeting developmental goals challenging (Alghamdi et al., 2021). Hence, most children with Down syndrome will develop gross and fine motor skills but their progress may be delayed. Children may meet their developmental milestones a couple months after expected, which is normal for individuals with Down syndrome. Due to the children's low muscle tone, it is important that early intervention be accessed and that parents work with their children daily to aid in their physical development. Alghamdi et al. (2021) notes that children with Down syndrome can be at risk of obesity if they do not develop an active lifestyle as their weak muscle tone can make exercise difficult. A child's physical growth and developmental success can boost their developmental growth in other areas as well. 

How Down Syndrome Impacts Psychological Development

Psychological development refers to cognitive, intellectual, and emotional skills that impact thought processes and reasoning. Individuals with Down syndrome may have some delays in cognitive development as evidenced by pronounced language deficits and verbal memory struggles (Onnivello et al., 2021). Cognitive development may be slightly slower but is always occurring. Some people with Down syndrome may have mild intellectual disability, but severe intellectual disability is rare for someone with Down syndrome. Individuals may learn well through observation but have difficulty paying attention due to impairments in executive functioning. However, people with Down syndrome tend to have strong non-verbal and implicit memory skills. Children may also have difficulty thinking abstractly (da Cruz Netto et al., 2020). Some children may reason out loud to themselves to aid thinking, while others may learn more through observation and illustrative means. Self-talk is considered a major coping mechanism for individuals with Down syndrome. People with Down syndrome may be at risk for depression, obsessive behaviors, and oppositional behaviors due to a tendency for externalizing behaviors (Fujino, 2017). Individuals with Down syndrome can have difficulty regulating their emotions, which can be problematic if it leads to extreme internalizing or externalizing behaviors (Sideropoulos et al., 2023). The psychological development of children is complex regardless of disability. 

How Does Down Syndrome Impact Social Development 

Research has indicated that for the most part, the social development of a child with Down syndrome is similar to any child (Guralnick et al., 2011). Small delays in development may occur in this area such as a child learning to express emotions and smile a few weeks later than predicted. Language-related delays can also impair social development. However, early interventions can help in improving social development in children with Down syndrome. A recent study found that children with Down syndrome may also have difficulty recognizing social cues and showing social awareness (Barisnikov & Lejeune, 2018). Children with Down syndrome tend to have no trouble understanding social rules based on morals, but struggle with understanding typical social conventions.

For additional learning here is a brief article on the development of children with Down syndrome:

Development and learning for people with Down syndrome (down-syndrome.org)

References

Alghamdi, S., Banakhar, M., Badr, H., & Alsulami, S. (2021). Physical activity among children with down syndrome: maternal perception. International journal of qualitative studies on health and well-being, 16(1), 1932701. https://doi.org/10.1080/17482631.2021.1932701

Attitude. (2009). Independence with Down syndrome: Kelly's story [Video]. YouTube. https://www.youtube.com/watch?v=tAoI0w1Pe_Q

Barisnikov, K., & Lejeune, F. (2018). Social knowledge and social reasoning abilities in a neurotypical population and in children with Down syndrome. PloS one, 13(7). https://doi.org/10.1371/journal.pone.0200932

da Cruz Netto, O. L., Rodrigues, S. C. M., de Castro, M. V., da Silva, D. P., da Silva, R. R., de Souza, R. R. B., de Souza, A. A. F., & Bissaco, M. A. S. (2020). Memorization of daily routines by children with Down syndrome assisted by a playful virtual environment. Scientific reports, 10(1), 3144. https://doi.org/10.1038/s41598-020-60014-5

Development and learning. (n.d.). Down Syndrome Education. https://www.down-syndrome.org/en-us/about-down-syndrome/development/

Fujino H. (2017). Psychological support for young adults with Down syndrome: Dohsa-Hou Program for maladaptive behaviors and internalizing problems. Frontiers in psychology, 8(1504). https://doi.org/10.3389/fpsyg.2017.01504

Guralnick, M. J., Connor, R. T., & Johnson, L. C. (2011). Peer-related social competence of young children with Down syndrome. American journal on intellectual and developmental disabilities, 116(1), 48–64. https://doi.org/10.1352/1944-7558-116.1.48

Jung, Y. H., Kang, S. H., Park, E. C., & Jang, S. Y. (2022). Impact of the acceptance of disability on self-esteem among adults with disabilities: A four-year follow-up study. International journal of environmental research and public health, 19(7), 3874. https://doi.org/10.3390/ijerph19073874

Kazemi, M., Salehi, M., & Kheirollahi, M. (2016). Down syndrome: Current status, challenges and future perspectives. International journal of molecular and cellular medicine, 5(3), 125–133. https://doi.org/10.22088/ACADPUB.BUMS.5.3.125

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

Onnivello, S., Pulina, F., Locatelli, C., Marcolin, C., Ramacieri, G., Antonaros, F., Vione, B., Caracausi, M., & Lanfranchi, S. (2022). Cognitive profiles in children and adolescents with Down syndrome. Scientific Reports, 12(1), 19-36. https://doi.org/10.1038/s41598-022-05825-4 

[Photograph of characteristics of Down Syndrome]. (n.d.). https://www.meriahnichols.com/wp-content/uploads/2022/03/1.jpg

[Photograph of Kelly Fitzgerald]. (n.d.). https://www.facebook.com/photo/?fbid=463344139168869&set=a.463344112502205

Saha, S., Doran, E., Osann, K. E., Hom, C., Movsesyan, N., Rosa, D. D., Tournay, A., & Lott, I. T. (2014). Self-concept in children with Down syndrome. American journal of medical genetics. Part A, 164(8), 1891–1898. https://doi.org/10.1002/ajmg.a.36597

Sideropoulos, V., Van Herwegen, J., Meuleman, B., Alessandri, M., Alnemary, F. M., Rad, J. A., Lavenex, P. A. B., Bolshakov, N., Bölte, S., Buffle, P., Cai, R. Y., Campos, R., Chirita-Emandi, A., Costa, A. P., Costanzo, F., Des Portes, V., Dukes, D., Faivre, L., Famelart, N., Fisher, M. H., & Samson, A. C. (2023). Anxiety, concerns and COVID-19: Cross-country perspectives from families and individuals with neurodevelopmental conditions. Journal of global health, 13(04081). https://doi.org/10.7189/jogh.13.04081

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Self-perceptions from people with Down syndrome. American journal of medical genetics Part A, 155(10), 2360–2369. https://doi.org/10.1002/ajmg.a.34235

Voices for the Voiceless. (2019). Frank Stephens will change how you see Down syndrome | voices for the voiceless [Video]. YouTube. https://www.youtube.com/watch?v=uQNW9x7Z08Y&t=105s