The Process of Diagnoses and Care of Students with down Syndrome

Just as for typical children, children diagnosed with Down Syndrome are shaped and influenced by the people around them who model compassion, patience, and care. One of the main impacts on any child's happiness is their experience with their peers and educators at school. When educators view students with special needs as worthy of the same considerations and modifications as typical students, those students will have an equitable chance to reach their learning goals and build skills that will support their lives after their educational journey. My aim is to help fellow educators understand the complex life experiences of children with Down Syndrome from the day they are born and as they enter, progress through, and eventually leave the school system. I will begin this paper with an introduction to Down Syndrome diagnoses before providing a typical timeline for children with Down Syndrome before and after they enter the school system. I will also discuss some of the services and programs available to children with Down Syndrome and their families. By conveying the many facets of Down Syndrome, I hope that others will begin to see students with Down Syndrome as unique and varied as their diagnosis.

Throughout this paper, I will use the name 'Student A' to refer to a 5th grade student who has Down Syndrome. I have known Student A since they were in 1st grade and have observed them in many capacities including at school, participating in extracurricular activities, and at home with their family. Being a part of Student A's life as they have developed through elementary school has given me the opportunity to empathize with the journey students and parents may experience in public school special education programs.

In 1866, Dr. John Langdon Down described the key attributes of the duplication of chromosome 21 during cell development known at the time as Trisomy 21. Today, we describe this is process and the proceeding diagnoses as Down Syndrome (National Down Syndrome Society, 2018). The complex nature of Down Syndrome leaves many expecting parents anxious. Down Syndrome can be detected as early as an expecting mother's 12 week doctor visit. The markers that reflect a diagnoses are found in the hormone levels of the mother and the measurements of the fetus ("Down syndrome", 2018). The mother's age may also play a role in the possibility of Down Syndrome diagnoses. Geriatric pregnancy, or pregnancy over the age of 35, run higher risks of Down Syndrome diagnoses. However, 80% of all people with Down Syndrome were born to parents under the age of 35 (Tullos Barta & Salinas, 2010). These calculations are not a diagnosis; rather, they produce the odds in which a child could be born with Down Syndrome (National Down Syndrome Society, 2018). In Student A's case, their mother had odds of 1/50 based on her age, which was 37. After fetal measurements were taken, the odds went up to 1/17 (Anonymous, personal communication, December 2, 2018).

Due to the demand of accurate screening, Down Syndrome research has been heavily funded in the last 25 years. One way a fetus can be diagnosed before birth is through a procedure called an Amniocentesis. Amniotic fluid is extracted through a needle that has been inserted into the mother's uterus. This sample is then used to analyze the chromosomes of the fetus. Doctors usually perform this test in the second trimester, after 15 weeks of pregnancy ("Down syndrome", 2018). If a fetus' odds are high, most medical professionals encourage parents to proceed with an Amniocentesis. Some expecting parents, like Student A's, choose to opt out of screening (Anonymous, personal communication, December 2, 2018).

Ultimately, the cause of Down Syndrome is unknown and the diagnosis is seen throughout diverse populations. Down Syndrome does not discriminate between gender, nationality, or socioeconomic status (Tullos Barta & Salinas, 2010). Physically, people with Down Syndrome are smaller in stature as well as smaller facial features, almond shaped eyes some level learning disability, but not all features are the same. There is an endless variety of outcomes for a person with Down Syndrome. The medical description of Down Syndrome is bleek at best, stating that children with Down Syndrome can experience a vast array of complications including dementia, speech and hearing impairments, delayed motor functions and heart problems ("Down syndrome", 2018). The degree to which each child experiences these symptoms varies.

Just as Down Syndrome symptoms vary from person to person, the experiences of a student with Down Syndrome entering the public school system differ widely. While there is a typical timeline of evaluative procedures for children with Down Syndrome before and after they enter the school system, which I discuss below, each child's experience is highly varied and depends on the child as well as their family and school district support systems (Bird, Alton, & Mackinnon, 2000) .

Since children are diagnosed at birth, they will have consistently been assessed throughout their young lives by medical professionals. Entering school begins a process of developing skills based on the student's abilities and getting them to a place where they will be successful in life after school. Individualized Education Plan (IEP) goals focus on developing real world skills, including communication development, social skills such as performing tasks independently, and cognitive skills such as knowledge recognition.

The process of entering the public school system is very different for children who are born with a known disability verses students who educators come to find may have a learning disability once they enter school. Children who are born with a known disability like Down Syndrome generally receive state-funded services and support immediately at birth. During early intervention, which is considered birth to three years of age, teams of specialists do a full evaluation that observes the developmental milestones of the child. Milestone markers are then evaluated by a physical therapist, occupational therapist, and speech therapist. Student A's mother remembers an occupational therapist coming to their home when Student A was three months old (Anonymous, personal communication, December 2, 2018). If a child is meeting their developmental milestones, and there is no other evidence of skill deficit, they would no longer qualify for state services (T, Wolf, personal communication, December 8, 2018).

When a child reaches school age, or three to five, they begin receiving services from their county educational service district. At the age of three, Student A began to attend pre-school at a local elementary school two days a week (Anonymous, personal communication, December 2, 2018). Also at this time, the county educational service district set up students and their families with an Individual Family Service Plan (IFSP), which is similar to an IEP, but are intended for the whole family (T, Wolf, personal communication, December 8, 2018).

As a child with Down Syndrome enters kindergarten, they bring with them an IEP that was developed from their IFSP and pre-school experience. Once they enter elementary school, considerably less emphasis is placed on family support and the student's support system shifts toward the school. The student's IEP is then monitored consistently and adjusted yearly by school support teams, which can include the student's general education teacher, special education teacher, speech pathologist, occupational therapist, and/or physical therapist. The eligibility for services is evaluated every three years by the school psychologist until the student completes their senior year of high school (T, Wolf, personal communication, December 8, 2018). For up to three years post high school, some adults may continue to qualify for services from the county educational service district for continued support in developing life skills (Anonymous, personal communication, December 2, 2018) .

In addition to support from educational service districts, many families look outside of the school environment for community support. There are often organizations that provide opportunities for children with Down Syndrome, similar to those of typical students, such as summer camps and sports teams. In addition to providing these opportunities, support groups for parents can play a significant role in the development of the child by providing children and parents with access to knowledge and other resources. Student A's mother, for example, contacted Down Syndrome Network Oregon and her experience with them has been extremely positive. She has been connected with recreational opportunities for Student A, and expanded her family's support system far beyond what she thought was imaginable through connecting with other families in the organization (Anonymous, personal communication, December 2, 2018). While this timeline and the organizations and support systems for children with Down Syndrome and their families are somewhat consistent, the experiences of students still varies widely based on their range of abilities, interactions with educators, and learning goals. When educators set educational goals for typical children they are taught to look at each child as a unique and independent person separate from their other students. Students with Down Syndrome are worthy of same considerations as their peer counterparts. These students educational journey may look different but the goal is the same, preparing them for successful life beyond school.

References:

Bird, G., Alton, S., & Mackinnon, C. (2000). Accessing the curriculum: Strategies for

differentiation for pupils with Down syndrome. Southsea: Down Syndrome Educational

Trust.

This book offered strategies for supporting students with Down Syndrome in the classroom.

The book also gave insight on the process of creating a welcoming environment and

inclusion processes.

Family Journey in Education [Personal interview]. (2018, December 2).

Interview with Student A's mother who wishes to remain anonymous. She gave invaluable

information about her and her child's experience living with Down Syndrome.

Down syndrome. (2018, March 08). Retrieved from

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20

355977

The Mayo Clinic offered much insight on the diagnosis of Down Syndrome.The webiste

clarified the procedures available for expecting mothers to screen for Down Syndrome.

Tullos Barta, L., & Salinas, Y. (2010). Supporting the Student with Down Syndrome in Your

Classroom[Pamphlet]. Down Syndrome Association of West Michigan.

This pamphlet gave information about the process of children with Down Syndrome entering

the public school system as well as facts and history.

What is Down Syndrome? | National Down Syndrome Society. (n.d.). Retrieved from

https://www.ndss.org/about-down-syndrome/down-syndrome/

This citation clarified the 'causes' of Down Syndrome. It also addressed the history and

clarified in detail the chromosomal process that occurs when a child has Down Syndrome.

Wolf, T. (2018, December 8). Process of Developing an Individualized Education Plan

[E-mail interview].

Tandy Wolfe has a Masters in Special Education and is the Learning Specialist at Cedaroak

Park Primary School in West Linn, Oregon.

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