
"Down Syndrome is the most common genetic cause of learning disability with a frequency of about 1 in 700 births. It is caused by an extra copy of Chromosome 21." (Tapon, 2009, p.112) Genetic counselors do more prenatal tests for Down Syndrome than any other test which is meant to aid in planning the pregnancy and delivery as well as prepare the parents psychologically for the birth of baby who has a "disability". This usually results in a discussion for putting the baby up for adoption or aborting the pregnancy. As wrong as it sounds, parents carrying a fetus that will be born with Down Syndrome, almost always receive this conversation from the genetic counselor and the birthing doctor. (Tapon, 2009) Around 67% of pregnancies that are diagnosed with Down Syndrome in the United States are aborted. Europe's rate is at about 92% (Mansfield, Hopfer, & Marteau, 1999, p.3) which is the highest rate of aborted pregnancies diagnosed with Down Syndrome.
In fact, in the United Kingdom, fetuses who are determined to have Down Syndrome can be aborted at 40 weeks while a "normal" fetus can be aborted up until week 24. (Tapon, 2009) There is a lot of debate on whether this should be limited or not as more and more states are prohibiting termination after a prenatal diagnosis.
As is evidenced, children diagnosed with Down Syndrome face many challenges, even before they are born into this world. Once they have reached school-age, they can face even more challenges. Luckily, there are national laws and policies put into place that aid these children and provide resources to the families. Public schools that are federally funded provide Special Education classrooms, teachers, and instructional times to help these children through whatever they need help with. In the United States, they receive Individualized Education Programs (IEP) which pinpoints what areas to focus on and what steps should be taken to ensure a beneficial education. This is a result of measuring and assessing these children. In this case, it is beneficial to assess to determine the right path for these children so that they can receive a proper education and benefit from their surroundings.
The United Kingdom also provides assessments for school-aged children with Down Syndrome to determine what educational path they should be on. This can begin as young as 2 years old and determines what types of program and/or educational setting they should be a part of (Down's Syndrome Association, n.d.) so that they can achieve maximum results.
Assessing children with diagnosed disabilities can be extremely beneficial so that individualized approaches can be applied so that their challenges are minimal. I believe that measuring and assessing educational abilities for the sake of educational programs is acceptable and needed. Approach and reasoning prove to be the best reasons for measuring and assessing. When the approach is invasive or the reasoning is not for the benefit for the child, then measurement and assessment are unwarranted.
Reference
Down's Syndrome Association. (n.d.). Retrieved August 03, 2016, from
http://www.downs-syndrome.org.uk/for-new-parents/education/early-years/
Mansfield, C., Hopfer, S., & Marteau, T. M. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenatal Diagnosis Prenat. Diagn., 19(9), 808-812. doi:10.1002/(sici)1097-0223(199909)19:93.0.co;2-b
Schooling from Preschool to Age 21. (n.d.). Retrieved August 03, 2016, from http://www.ndss.org/Resources/Education/Schooling-from-Preschool-to-Age-21/
Tapon, D. (2009). Prenatal Testing for Down Syndrome: Comparison of Screening Practices in the UK and USA. Journal of Genetic Counseling J Genet Counsel, 19(2), 112-130. doi:10.1007/s10897-009-9269-1
HI Emily,
ReplyDeleteI enjoyed reading your post. The program that I work in is required to serve no less than 10% of children who have disabilities. So, providing for the needs of the children is a priority for us. I agree with assessing children who have diagnosed disabilities in order to develop individual goals to work on with the children so they are able to progress according to their individualized education plan.
The parents are also often excited to see their child reach a goal that was set and are able to feel that individualized progress.
Just a thought.
Sharon
Emily,
ReplyDeleteThis was an absolute gut-wrenching post!!! It was very informative and well written, but the facts that you found are absolutely horrid!
How sad that a full term baby can be "aborted". I wouldn't even consider it abortion at that point in time, that is point blank murderous! It is also sad that expecting mothers of a down syndrome child are met with such intense discussions of abortion and adoption. I feel options for different types of aids and programs to enhance their life would be way more beneficial to child and mother, What are your personal feelings about your findings?
Jada
Emily,
ReplyDeleteYour post really was an eye opener! I am currently pregnant and going through the long list of testing for the baby. As I am learning about all of the testing that needs to take place I am getting overwhelmed with all of the information that I am learning and sometimes the results are given to parents in a way that truly scares them! I recently got a phone call from my doctor saying that the baby's levels for Spina Bifida were slightly elevated. After a long pause they then say that many doctors find this normal and that I should not be worried. How can I not be worried when you stated it that way!? It really is crazy how much children are tested and assessed. You almost think to yourself is it really worth it? Our parents and their parents most likely did not have this extensive testing and they survived! Great post! It was very informative and true!
Hi Emily,
ReplyDeleteThis post was very informative about how the UK strategizes for children who have Downs Syndrome. I think it is downright barbaric that full term babies can be aborted if they have Downs Syndrome in the UK, and really was surprised to learn that they do that! While I do not like standardized testing, I do think it is a good idea to assess a child's abilities and skill sets to see where we as educators can set them up for success. It is important to build on what a person has and not really what is dictated they should have. Thank you for your post!
Steva