Friday, March 24, 2017

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



Wednesday, March 1, 2017

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



Friday, February 24, 2017

Allan Cushing: The Life-Changing Mt. Hood Kiwanis Camp Experience

Allan Cushing, Director of Programs at MHKC in top right button

I was fortunate enough to be able to interview Allan Cushing, the Director of Programs for Mt. Hood Kiwanis Camp (MHKC). He shared with me a lot of great insights about camp when we talked. In part one of this interview, I find out how Allan became a part of camp, and what he and other counselors can and will gain from camp. 

First, I asked Allan how he initially became a part of Mt. Hood Kiwanis Camp. He said he is one of the “few people that actually came from Pacific University” and he “came up, absolutely loved camp,” and didn’t know what he was going to do after that. His counselor supervisor looked him up on Facebook and encouraged him to come back to camp, which he did. He returned to camp a number of times, and then two years ago he “moved into the role of Rentals and Volunteers coordinator.” In mid-November 2016, he became the Director of Programs.

Interestingly enough, Allan didn’t always know he wanted to work with people with disabilities. He started out his college career going to school to be a civil engineer! He thought he’d study engineering and “be a college baseball coach down the line,” but then he thought becoming a coach and engineering clashed a bit, so he moved over to teaching. He substituted as a para-professional when he wasn’t in school, and was on track to be a general education teacher teaching math. Then as he was signing up for classes the summer before his senior year, he found out about Mt. Hood Kiwanis Camp. He thought about his time doing peer tutoring in high school for the special education classroom, and thought MHKC would be a great experience, so he signed up. It turned out that MHKC was “life changing” for Allan.

After his first stint up at camp, Allan decided he wanted to be a special education teacher, so he continued his undergrad in Education with a focus in Special Education. After leaving Pacific, he went back to being a para-professional in the Hillsboro school district. He enjoyed it, but yearned for something more. “When the opportunity to be the Rentals and Volunteers coordinator opened up, [he] saw that as an opportunity to get involved with this organization, and it went from there.” He worked in that role for a year and a half, and then “the organization believed in [him] enough to give [him] a shot” at being Director of Programs. He is now really happy in his current role.

I was curious what Allan had gained as a camp counselor and how had it changed his life. He said he gained “a new perspective.” He had been a peer tutor in high school, and he would help in special ed classrooms. He was also a substitute para-professional throughout college, but it was different than MHKC. At camp, he “really got to see what made all of these people who have disabilities special,” and he really began to see people for what they could do instead of looking at their limitations.

Another important part of camp for Allan was “learning how to communicate with a lot of different people” including, but not limited to, the campers. In his first group up at camp, there were counselors who were from all different walks of life. There was an army veteran, an exchange student from China, another exchange student from India, Allan was a college baseball player, and another woman was in her 40s and was married with children. Everyone had such different backgrounds, but they learned how to work together as a “cohesive group.” Allan says, “it is something you can take into your everyday life.” You learn how to appreciate what everyone brings to the table.

Allan says that there is so much to gain from being a camp counselor. Not only will you learn how to communicate in the best of circumstances, but also how to communicate when “you’re tired, you’re sweaty, you’re hungry at times, and may feel a little frustrated.” Those communication skills will translate for you and you will be “successful anywhere. You’ll realize you are going to be fine outside of college.” You’ll also gain a better understanding that differences are not detriments. Instead, those differences are what makes a person valuable. Counselors will also find out how much people are actually the same despite their differences.

Allan reminds us that even if “you have no experience” Mt. Hood Kiwanis Camp still encourages people to become counselors and will prepare them with training and support. He said that “I would feel comfortable saying that a majority of our counselors have not worked with people with disabilities, and that’s okay. The important thing for us is for them to come in with an open mind.” Working with people with disabilities, Allan said, is like riding a bike. In the beginning, it’s new and can be challenging, but it eventually becomes natural. “You might fall a couple of times. You might fail…but the important thing is to get back up and keep trying. And remember you’re always surrounded by support.” You learn how to take feedback and implement new strategies. You also learn the great rewards that come from “putting the needs of someone else above your own.” When you are feeling exhausted, all you have to do is “remind yourself that it is just two weeks,” and you can get through it.

Counselors have a great team of professionals backing them up, so they don’t need to worry about making some mistakes. For example, Allan says “we have lots of campers who have had seizures. To counselors, it can be a scary thing, because it’s not the norm—especially to a counselor who’s never seen something like that before.” He remembers the first time he saw a seizure, and the staff member was very calm. He was wondering “why aren’t we doing any more?” But with experience, you learn how to calmly respond to a seizure, and the plan to follow when they occur. For the campers, this might be something they are totally used to, and eventually after training and experience, the counselors are confident in supporting people having seizures, even if it might seem scary at first. Allan said that when he was a counselor supervisor he would tell his group, “I may let you flounder in the water a little bit, to let you think through solutions, but will always be here to support you. We just want you to work through it.” When the counselors do finally work through a difficult situation they will realize they had it in them all along, and knowing they can do it is just an important as it is for the campers to find out the things they can do too.

___________________________

That’s it for part one. In part two of our interview with Allan, we find out more about the campers and what kinds of fun activities they participate in.

Tuesday, February 14, 2017

Celebrating Ed Roberts, Disability Advocate

Ed Roberts Google Doodle

On Jan. 23, 2017, the featured Google Doodle in the US was a cartoon drawing celebrating the 78th birthday of Ed Roberts. Ed was born Jan. 23, 1939 and died March 14, 1995 at the age of 55. During his life, he was a notable disability rights advocate.

Ed was “severely disabled from polio which he contracted as a teenager. He had virtually no functional movement and was dependent on a respirator to breath[e]” (ilusa.com). Ed, the first student with significant impairments to attend UC Berkeley, was inspired by the social justice movements of the 1960s and 70s, and he went on to start the self-help “movement that would radicalize how people with disabilities perceived themselves” (ilusa.com). In a letter to Gini Laurie in 1970 Ed stated, “I’m tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big—cripple power” (ilusa.com).

Photo of Ed Roberts
Among many notable achievements, Ed “was awarded a MacArthur fellowship; and he was co-founder and President of the World Institute on Disability” (edrobertscampus.org). He also inspired a world of disability rights advocates, and the Ed Roberts Campus was created in his honor. The idea for the Campus came shortly after his death, and is a “universally designed, transit-oriented campus located at the Ashby BART Station in South Berkeley. The ERC houses the offices of the collaborating organizations as well as fully accessible meeting rooms, a computer/media resource center, a fitness center, a café, and a child development center” (edrobertscampus.org). It is 80,000 sq. ft. and is a beacon of universally accessible design featuring a helical ramp, accessible elevators, automatic doors, wide corridors, restrooms for people with all abilities, specially designed signage, and hands-free sensors and timers among other innovations.

Interior of Ed Roberts Campus 
I imagine Ed would be proud of the ERC, and he should as well be happy with the fact that he has inspired so many people with disabilities to take life by the reigns. Even if people don’t know about Ed, surely they have been impacted by the disability rights movement. Cheers to Ed and a happy belated birthday!

Citations: