World Down Syndrome Day: #NotSpecialNeeds

Cell Organization and Down Syndrome Test

March 21st marks World Down Syndrome Day, so for this week’s post I thought it would be a good idea to look into what Down Syndrome is.

Down Syndrome has been described throughout history, but it wasn’t until 1866 that John Langdon Down synthesized the diagnosis. Later in the 1950s, Jérôme Lejeune figured out that Down Syndrome was a chromosomal difference (ndss.org). In people with Down Syndrome, the twenty-first chromosome has a whole or partial extra copy. The whole or partial copy leads to visible differences like “low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm—although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all” (ndss.org). There are different kinds of Down Syndrome: Trysomy 21, Mosaicism, and Translocation. Although we know that there is a chromosomal difference with Down Syndrome, there is no definitive answer to the cause of Down Syndrome. The older a woman is when she gives birth does statistically increase the likelihood of a baby having Down Syndrome, but researchers don’t really know why.

As for the science of it, the above picture gives a brief synopsis of the genetic structure of our cells. We all have millions of cells in our bodies, and each cell has a nucleus. Within this nucleus are the chromosomes, and those chromosomes contain our genetic makeup or DNA. In recent years, scientists have been learning more and more about our DNA through gene mapping. What is pretty amazing is that we can see pictures of the Down Syndrome difference by looking at chromosomes! Included in the image is a snapshot of a test that shows the twenty-first chromosome with an extra copy.

No matter what causes Down Syndrome, it is important to realize that people with Down Syndrome are just regular people, and they are more than just their syndrome. To combat stigma, the #NotSpecialNeeds campaign released a video on World Down Syndrome Day that reminds all of us of this. The video is quite humorous and shows that people with Down Syndrome have human needs, not special needs. Be sure to take a couple of minutes to watch the video. If you have some time you might also want to check out the character Becky (played by Lauren Elizabeth Potter) on the TV show "Glee" who is also in the #NotSpecialNeeds video.



Citations
http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/
http://www.notspecialneeds.com

The Good IDEA: Education Guarantees for Students with Disabilities

There has been recent talk in the news about something in the educational field called the IDEA, but what is it, and why is it important?

The IDEA stands for Individuals with Disabilities Education Act, and it is a major amendment to the Education for All Handicapped Children Act (sometimes referred to as EAHCA or EHA, or Public Law (PL) 94-142). The EHA was enacted in 1975, and the IDEA was signed into law in 1990. It is “legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs” (Wikipedia.org).

If you were born after 1975 you might wonder why this is so important. Before the EHA “public schools accommodated only 1 out of 5 children with disabilities” and many children were excluded from school all together (Wikipedia.org). Instead, many children were put in state institutions or simply received no education at all. In the book, Learners on the Autism Spectrum, Julie Donnelly talks about how her son who has autism was initially labeled “mentally retarded” and taken out of the mainstream classroom without any parent input (Donnelly in Buron & Wolfberg 2014, 389). This was before the EHA was put into law. Donnelly had to fight for help from the schools where her son went. Before the EHA, the schools were within their legal right to refuse to provide help or even an education. Donnelly’s son was not mentally retarded. He had autism and a very high IQ, but he needed special help in order to succeed in school. Donnelly’s son got help, because his mother was pushy and involved, and eventually the EHA was passed. Her son went on to earn a B.A., two master’s degrees, he got a job, and got married, but he was lucky to have a family who fought for him (Donnelly in Buron & Wolfberg 2014, 396). Others were not as lucky.

Thankfully, the IDEA now exists. The IDEA provides for more individualized components in the educational plan than the EHA did. There are six main pillars to the IDEA—the Individualized Education Program (IEP) that is tailored to each student’s need; Free Appropriate Public Education (FAPE) which means that it is available free for every student; Least Restrictive Environment (LRE) which means kids are not segregated from their non-disabled peers unless it is absolutely necessary; Appropriate Evaluation which is used to protect against mis-identification of children’s needs; Parent and Teacher Participation to ensure that families are well-informed and a part of each decision process; and Procedural Safeguards which are “designed to protect the rights of children with disabilities and their families” (Wikipedia.org). There are other parts to this legislation, but these are the main components.

The IDEA has come up in the news, because there are some voucher schools that require students with disabilities “to sign away their IDEA due process rights” in order to attend that school (WashingtonPost.com). To many people the idea of having to give up rights to the IDEA means giving up an education. Those of us in the USA are lucky to have the IDEA legislation (despite the added paperwork), because, as Donnelly points out in her article, people in other countries have no access to education for their disabled children and are amazed that this kind of legislation even exists at all (Donnelly in Buron & Wolfberg 2014, 393). For those of us in the disabled community, we definitely don’t want to go back to the days before the EHA and the IDEA. So, now that you know a little about the IDEA, you can spread the word: the IDEA is a good idea! Let’s make sure it sticks around.


References:

Donnelly, Julie A. “Growing up With Autism: One Parent’s Perspective.” Learners on the Autism Spectrum, edited by Kari Dunn Buron & Pamela Wolfberg, AAPC Publishing, 2014, 389-399.
https://en.wikipedia.org/wiki/Education_for_All_Handicapped_Children_Act
https://en.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act

https://www.washingtonpost.com/news/answer-sheet/wp/2017/01/17/betsy-devos-confused-about-federal-law-protecting-students-with-disabilities/?utm_term=.cdce73a2c455