Children who are born Down Syndrome have a “Chromosomal Abnormality” which then effects the way they develop through their entire childhood into adulthood (Rathus, 2016, p.53). During conception each parent gives 23 chromosomes which contain the “genetic information” that give a child its traits (Rathus, 2016, p.49). Each child should have a set of 46 chromosomes but children that are born with Down Syndrome have a duplicate of the 21st chromosome resulting in an abnormality. The Copy of the 21st chromosome is medically referred to as “Trisomy” and Down Syndrome is Trisomy 21 (Facts about, 2019).
There are two other types of down syndrome, Translocation which about 4 percent of children born with Down syndrome have and Mosaicism which about 1 percent of children with down syndrome have. These are less common forms of Down Syndrome but this paper will primarily focus on Trisomy 21. There are many reasons as to why a child with Down Syndrome is born. The Down Syndrome gene may run in the parents and during conception that gene may become dominant.
A mother who is older than 35 and a father who is older than 40 is “five to six times” higher to have their child develop an intellectual disability (Rathus, 2016, p.53). Due to the extra chromosome the brain anatomy is changed resulting in a child with intellectual disabilities and physical differences. Trisomy 21 is one of the most common chromosomal abnormality diagnosed and every year an average of “6000 babies” are born with the extra 21st chromosome “in the US”(Facts about, 2019) This means that for every 700 babies born, 1 baby has Trisomy 21.
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Children born with Down Syndrome are delayed in meeting their milestones. Many children born with Trisomy 21 are premature births which can further contribute to the delay in development. The infant can be born with low birth weight, have underdeveloped organs, heart defects, have “respiratory distress syndrome” and Gastrointestinal issues which pose a major threat to their health and learning abilities (Rathus, 2016 p.123). The infant may not be able to pass stool due to “narrowing of the small intestine” which leads to constipation, vomiting episodes and loss of weight (Fisher, 2017).
The Infant may require a feeding tube in order to receive proper nutrition, they may require oxygen so that they can breath effectively due to underdeveloped lungs and may need to stay in an incubator in neutropenic precautions to prevent germs from getting to the infant. Many Infants with Down Syndrome are Diagnosed with “Failure to thrive” due to slow weight gain (Rathus, 2016, p.154). Infants born with Trisomy 21 need the same amount of love and affection as any other child to grow healthy. They may require extra assistance in meeting their milestones, but parents need to be there emotionally and physically to ensure their child grows to his or her best potential.
There are physical characteristics that are different with children with Down Syndrome that are indicators of Trisomy 21. The “bridge of their nose” and their face is flatter than normal, they have eyes that are “almond shaped” and have a slant to them (Facts about, 2019). They have “small heads” and have smaller ears which can lead to many inner ear infections (Pawar, 2017). Tubes are often put in their ear canal due to build-up of fluid which can cause hearing loss and delay speech development.
They have shortened necks and “poor muscle tone” which require therapy to help strengthen (Facts about, 2019). This is referred to as “Hypotonia” which can cause delays in crawling, sitting up, and head strength (Pawar,2017). With the assistance of Occupational therapist/physical therapist, Children with Down syndrome can develop the strength needed to perform these goals by learning exercises to strengthen their muscles. They also are “shorter in height” and when fully developed are shorter than average height for an adult (Facts about, 2019).
Children with Down Syndrome require “early intervention” because they don’t meet skills needed naturally and require assistance to meet childhood goals. “Motor development” is a major issue in children with Down Syndrome and occupational therapist help by facilitating “optimal movement patterns (Pawar, 2017). This means that they teach and practice with the child basic skills Infants and toddlers would normally do on daily basis. At around 2 months infants need to turn their head side to side to “prevent suffocation”, Many children with Trisomy 21 lack this basic skill (Rathus, 2016, p.167).
The physical therapist helps by exercising the muscles in the neck for the infants since they are unable to do so themselves and they teach the parents the proper techniques to continue at home. This helps the child reach their goal of lifting their head during tummy time and naturally by themselves. Normal children learn to sit around “6 months” where children with Down syndrome begin to sit around their first year (Lawler, 2018).
Repetition is key for parents to practice with their child. Physical therapist help put the child in sitting position and keep them balanced so they can train and build the back and leg muscles. When the child can sit, the therapist may play games with them to help develop other motor skills such as passing a ball. The therapist will sit with the child and push the ball so that the child will mimic the action and push the ball back. Crawling begins around 8 months and children with Down syndrome may not start crawling until “18 months” (Lawler, 2018). Just as with any other child, parents and caregivers must pique their interest in order to get them to want to crawl.
By placing toys in a near-by area, physical therapist will place the infant on all fours and move their limbs forward one at a time to strengthen arm and legs muscles and practice coordination. The infant may become agitated at first but with repetition the infant will get used to the motion and begin to try and do it themselves. It is important to show encouragement by clapping, saying good job and providing affection for a job well done. Children with Down syndrome begin walking around 28 months and normally children are supposed to be walking anywhere between 12-15 months (Rathus, 2016, p.168). Physical therapist walk hand in hand with the child to help develop balance, many times children with down syndrome have issues with “hip dysplasia” and need further intervention in exercising the area.
The hip is a “ball in socket joint” and many times due to muscle weakness in children with Down Syndrome, the hip will become dislocated (Down Syndrome, 2019). Physical therapist and parents will work closely with Orthopedic doctors to find a brace, specific type of inserts and any “walking aides” the infant may need to assist them while learning to walk (Down Syndrome, 2019). The process can be overwhelming for the child, but these exercises are needed to help the child meet their milestone and although parents may feel bad, they must remain strong and push forward for their child.
Speech therapist also work with Children with Down syndrome well into adolescence if not further because Children with down syndrome have issues articulating sounds and pronouncing words. Children with Trisomy 21 tend to have “poor hearing” and learning capabilities (Golisano Children’s, 2020). This can be challenging as the child develops because they may not verbally be able to communicate even though they understand the language spoken to them. It can be difficult to control “facial muscles” associated with speaking, tongue movements and lip movement all at once (Fisher, 2017).
It will take time for the child to fully understand language due to hearing issues. There are different techniques that speech therapist uses to help the child communicate. They will read them age appropriate books and repeat certain words slowly so that the child can hear the letter sounds in the word. They sit face to face with the child so the child can watch the lip movements of the therapist as they say a word. The child will eventually mimic what the therapist is doing by watching and repeating. If parents have “5 minutes of practice” daily with heir child, it can help them increase their goal of speaking. (Lawler, 2017).
Many times, speech therapist will introduce sign language to children with Down Syndrome so they can easily communicate their needs. Learning sign language not only helps with speech, but it also helps with fine motor skills using the hands. When signing the word, no, it is the same motion as a pincer grip. Parents are to repeat the learned skills with their children at home to further their skills and continue their development.
Children with Down Syndrome are labeled as being “difficult” because their temperament can be extremely defiant (Rathus, 2016, p. 243). They are “poor bottle feeders” and have “poor sleep patterns” (Rathus, 2016, p.242-244). Many children with Down Syndrome have sleep apnea which is absence of breath while sleeping. They have very “short attention spans” which makes it difficult to learn something new if they can’t remain focused (Hatter,2017). They have issues with behaving because they don’t have good self-control and they are very impulsive. They do as they want and when they don’t get their way, they can throw tantrums out of frustration. This can lead to difficulty in maintaining friendships in school, listening to the teacher’s instructions and learning.
They have “poor social skills” and this sometimes can lead to aggressive behavior like pushing and hitting (Hatter, 2017). The key is to have patience, everything that a “child without disabilities” can do, a child with Down syndrome can do but it just takes time. The child should be taught to be independent as they develop so they can develop the same skills as other children, like getting dressed and “Grooming” (Hater, 2017). Teaching independence to the child will help perform tasks on their own and develop confidence. When a child is confident, they are happier, take well to new task and learn better.
Children with Down Syndrome are just as capable as regular children. They can achieve most of if not all the same milestones as a regular child. They can attend school, have a social life and have a great career in their adulthood. During infancy they must have parents that care and address their needs as they develop. If parents need help caring for their child with Down Syndrome there are so many organizations that can help teach parents how to care and provide for their child. There is the “National Down Syndrome Society, National Down syndrome Congress, Global Down Syndrome Foundation” and many more that help families with children with Down Syndrome (National Down Syndrome, 2020).
The child’s pediatrician is also a great place to start if parents need help on how to assist the needs of the developing child. These organizations help with medical cost, information, protecting people with Down Syndromes rights, education and many more duties. They have certain clinics that are free for check-ups and goals for children with Trisomy 21. Many people with Down syndrome have become movie stars, important businessmen on wall street and singers. Jamie Brewer is an actress on a very popular TV show called “American Horror story” and she has had “lead roles” in the show almost every season (Li, 2018).
Prior to her becoming an actress she was a model and the first woman with Down Syndrome to “walk the runway” in New York Fashion week (Li, 2018). Despite the odds against her because of her Down Syndrome, she overcame many obstacles that are associated with her condition, but she rose above. They are still children that need to be loved and cared for, they just require a lot of patience and most of all time to get to where they need to be. Parents need to be understanding and work hard so that their child can feel safe and grow up normal and happy.
References
- Rathus A, S. (2016). Childhood & Adolescence Voyages in Development. Cengage Learning.
- Hatter, K. (September 26, 2017). The Typical Behavior of a Child with Down Syndrome. How to Adult. https://howtoadult.com/typical-behavior-child-down-syndrome-3272.html
- Fisher, N. (September 26, 2017). How can Down Syndrome Affect a Child’s Development. How to adult. https://howtoadult.com/can-down-syndrome-affect-childs-development-2369.html
- Golisano’s Children Hospital. (2020). Developmental and Behavioral Pediatrics Down Syndrome. URMC. https://www.urmc.rochester.edu/childrens hospital/developmentaldisabilities/conditions/down-syndrome.aspx
- Psychological Behavior. (2020). Down Syndrome Resource Foundation. https://www.dsrf.org/information/psychological-development/
- Lawler, M. (June 12, 2018). Raising a child with Down Syndrome: What to Expect. Everyday Health. https://www.everydayhealth.com/down-syndrome/what-expect-raising-child/
- Facts about Down Syndrome. (2019). Center of Disease Control and prevention. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
- Pawar, P. (April 29, 2017). Occupational Therapy for Down Syndrome. Occupational Therapy National Down Syndrome Organizations in the US. (2020). Global Down Syndrome Foundation. https://www.globaldownsyndrome.org/about-down-syndrome/resources/national-down-syndrome-organizations-2/
- Li, J. (March 14, 2018). Jamie Brewer of ‘American Horror Story’ Is First Woman with Down Syndrome to Star in Off-Broadway Play. Inside Edition. https://www.insideedition.com/jamie-brewer-american-horror-story-first-woman-down-syndrome-star-broadway-play-41506
- Down Syndrome. Ortho Kids POSNA http://orthokids.org/Condition/Down-Syndrome
