Rainbow Connection

May 10, 2018 | Read

Educators often wonder how well they can provide appropriate educational services to all students. Can it be that sometimes students’ needs are too intensive and it becomes an undue burden for schools to provide reasonable accommodations? There’s always a lot of fear. Albeit challenging, it is possible when a creative parent and a passionate student connect with a willing teacher to work toward inclusion.

Allow me to introduce you to Magger Chen, a talented young lady from Taiwan. Magger has Nemaline Rod Myopathy, which is a type of rare disorder that leads to rod-like structured muscle cell. Like many individuals with rod myopathy, Magger experiences muscle weakness, hypotonia, and difficulties in speech and swallowing. She does require extensive supports—power chair, medical ventilator, other assistive technology devices, and a personal assistant to help with transfer and position so she can fully participate in daily living activities. Sometimes it takes her seven hours a day just to consume food.

Is school an option for her? 

Despite the fact that Magger was passionate about learning and interacting with friends, her health condition made her vulnerable to infection, especially when she was younger. In middle school, Magger was homeschooled with an arrangement to attend Science class at a local middle school. Magger’s mom, Evelyn, often spent two hours just to help her get ready to attend one 40-minute session. The extensive care giving demand eventually took a toll on both Evelyn and Magger. Moreover, the limited time in class prevented Magger from having meaningful interaction with her peers. Evelyn and Magger requested live streamed session for the Science class so Magger could watch and learn from home. However, the teacher agreed to only a set-angle, one-way broadcast. The limited access to curriculum and peer interaction was still not what Magger was looking for.

Fortunately, a Science teacher from another school district heard about their experiences through a common friend and reached out to Evelyn. The teacher said even if she had no idea how to setup for tele-education, she would love to have Magger to be part of her class.

The first class was somehow chaotic. Because the teacher was not familiar with iPad, she really had difficulties finding an optimal setup for the camera. Nevertheless, she was determined to include Magger as part of the class. That resolution rippled out to influence the students, who ended up seeing Magger as part of their class, taking Magger on a virtual tour in the lab, even setting up prism and iPad in the hallway so Magger could be part of the experiment on refraction.

That rainbow she and her peers made was—and still is—according to Magger, the most beautiful experiment she’s ever done.

This magical journey continued. Magger made a surprise appearance in class the last session. Her friends even helped her to her designated seat (where they usually set up the iPad). This was a few years ago. Magger now attends Taipei Tech School, majoring in Interaction Design. The school uses multiple devices to broadcast multi-camera live video on her phone so she still can learn from any suitable position. With her AAC device and phone, she also gives guest lectures on a regular basis.

Because of one science teacher who was willing to try, we all know how much potential she has now. Her mom attributed her successful college life to their creative problem-solving skills (from transition between classrooms to utilizing assistive technology) to this experience. Nowadays, I would introduce Magger like this: Magger Chen is an active Facebook user, empathetic animal lover, fearless fashion designer, and she keeps track of all the trendy topics (including mobile games). With pen tablet and stylus, she draws all kinds of professional and beautiful illustrations.

I just can’t wait to see how she would paint her future with rainbow color.