Rebecca Alexander Shares Inspirational Message About Living with Disabilities

Imagine being 19 years old, away at college, living a healthy, active life-style and waking up one morning with a deafening ringing in your ears that lasted for days. Scared, you make your way to the campus medical center where, after a battery of tests, you are diagnosed with a rare genetic disorder called Usher Syndrome. The doctors explain, at the tender age of 19, as a result of Usher Syndrome, you will have progressive vision and hearing loss and likely be completely deaf and blind by the time you are in your thirties. Terrifying to even think about, right? Well this is exactly what happened to Rebecca Alexander when she was at the University of Michigan some 20 years ago. And while this diagnosis would be enough to make even the strongest of wills want to give up, it instead inspired a sense of determination in Ms. Alexander which helped her accomplish a myriad of incredible goals including earning two master’s degrees from Columbia, scaling Mt. Kilimanjaro, and publishing a best-selling book titled, “Not Fade Away”.

On the evening of January 14th, Scarsdale PTC/C.H.I.L.D invited Rebecca Alexander to relate her incredible journey and share what helped her to conquer one challenge after the next. When Ms. Alexander first stood at the front of the auditorium with her radiant confidence, sculpted arms, and beautiful smile, it was hard to imagine that this woman had any difference of ability at all. However, Ms. Alexander quickly described that since her diagnosis in college, without her cochlear implants, she is now completely deaf and suffers from severe vision impairment (though at 40, she considers herself lucky to have what she calls “donut” vision instead of the complete blindness doctors said would occur by the time she was 30). Alexander went on to detail how although her diagnosis with Usher Syndrome at 19 was shocking, it wasn’t the first time she had struggled with her vision and hearing.

At the age of 12, Ms. Alexander told her parents that she struggled to see the blackboard at school. Subsequently, she was later wrongly diagnosed with Retinitis Pigmentosa, an inherited disorder that also eventually leads to blindness. It was this diagnosis that led Ms. Alexander to learn how to tackle challenges head on. Alexander credits her mother with empowering her by exposing her to as much information about blindness as possible. Alexander described how her mother would take her to conferences about blindness where she learned to interact and feel comfortable in the blind community. And because she still had sight, Alexander was able to help others in the blind community, instilling in her a strong sense of confidence. While everyone is different, Ms. Alexander believes that empowering children whom have “differences” with information about their disability can help them build resiliency.

Also important to note, Ms. Alexander vows that resiliency didn’t happen overnight; she didn’t suddenly decide to rise to the challenge. In fact it was a long process of overcoming one difficulty at a time. To expound upon this point, Alexander related that while in college, she was so embarrassed by her hearing aids that she tried to go without them during a Homecoming event with friends. As a result she went the entire evening without being able to hear or understand anything that was being said and realized that she was only hurting herself and making things harder for herself in the long run.

In the same vein, Ms. Alexander also said that the first few times she used her cane to help guide her, she was so worried about what other people thought and how they would judge her, that she ended up crying. But after realizing how helpful her cane was and how much confidence it gave her to navigate on her own, she started to work on accepting her circumstances. It was dealing with situations like these, one instance at a time, plus support from her family, that encouraged Ms. Alexander not to let her disabilities define her or decide her trajectory.

While Ms. Alexander expressed her gratitude for her parent’s support, she also warned that it is vital for parents (especially parents of children with disabilities) to make sure that they are taking care of themselves. Alexander detailed how difficult it can be for parents to come to terms with a diagnosis of a child and to learn to be a parent to a child with a disability. Parents have a hard time accepting that their expectations for a child with a disability differ from the dreams they had before they realized the child was differently-abled. Additionally, Ms. Alexander reminded us that children are like sponges and will absorb everything. They will easily pick up on your anger, sadness, and anxiety. For these reasons, Alexander encourages parents to get the support they need as well.

After her presentation, Ms. Alexander was joined by representatives (psychologists) from Scarsdale elementary, middle, and high schools and the panel opened up the floor for questions.

One parent asked, “With such potential limitations, how did you get to a place where you can do so much?”

Alexander responded by emphasizing the importance of teaching your child self-advocacy. She believes everyone should be teaching their children and students how to advocate for themselves and their needs. And if you are a differently-abled person, it is important to educate others about your disability so they can better understand the accommodations that would be helpful for you. Alexander also conveyed that being open and honest with people about her needs has been incredibly helpful to her successes. In conjunction, Ms. Alexander stressed the importance of showing gratitude for those who do help. She stated that everyone wants to feel like they matter or they are needed and if you express your gratitude you allow the helper to feel how instrumental they are to you.

Another parent asked, “Where should parents turn for support when their child is newly diagnosed with a disability?”

Kenneth Bonamo, Principal at Scarsdale High School, suggested that a parent’s first stop should be at their child’s school. Each school is equipped with a team of experts (including psychologists and special education teachers) who are ready and willing to help.

It was also expressed by the panel members that children should be an active part of creating solutions. Children shouldn’t just rely on mom and dad to fix everything for them, but rather learn the tools necessary to cope and manage. Also stressed was the idea that parents should lead by example.

Another parent asked, “How can we celebrate kid’s differences or help them to feel more “normal”?

Janelle Brown answered that it is often helpful to have children dispute dysfunctional thoughts or as she put it, dispute the “bully in the brain”. An easy way to do this with children is by creating a “pro and con” list and to look at the data and to see if what we are telling ourselves is reality or perhaps exaggerated. She also suggested that children can rate problems as a “big deal” or a “little deal”. A big deal would indicate someone is hurt or there is a real threat to safety, on the other hand, a small deal would indicate that everyone is safe and the child is bothered by the situation and should therefore react accordingly.

At the high school level, psychologists work to empower their students and remind them that no one is good at everything. Instead they encourage their students to focus on their own strengths. They also teach their students to practice “radical acceptance” where you don’t have to like or agree with a situation, but you should try to accept it and figure out ways to deal with it.

Just as important, Ms. Alexander reminded her audience that parents should strive to offer their children love and consistency. She also reiterated that children will take their cues from their parents, so parents need to work on their own reactions and self-awareness. And last, it is important to implement and teach coping skills at home.

To see Rebecca Alexander’s full presentation click here where a video of the program will be posted in the next few days. And to learn more about Ms. Alexander’s amazing journey, be sure to check out her memoir, “Not Fade Away” or visit her website.