In addition to the medical stuff, there are other things going on in Scott’s life that we’d like to share with you.

College Update, 2017

Scott is now in year four of a five-year software engineering program at Rochester Institute of Technology, which is about five hours from home. Going away to school was rough on him because it forced him out of the protective cocoon of home, school, and friends. Most college freshmen face this, but it’s particularly difficult for kids with disabilities. The first year was the toughest on Scott, but each subsequent year has been better than the one before. Thank goodness for Skype, which allows us to easily communicate with Scott. We talked with him almost every evening those first few years, but now a week or two can go by before we connect with him.

Scott lived in the dorms for the first two years and shared a relatively large room with another guy. He didn’t get along with his roommate at the all the first year. His roommate the second year was better. Scott is now living in an on-campus apartment, which he likes much better. The apartment has four private rooms and two bathrooms (two rooms each share a bathroom), a large living area and kitchen, and laundry facilities right in the apartment. RIT installed a bed shaker connected with the fire alarm in both his dorm room and his bedroom in the apartment. We’re grateful for how easy RIT’s Housing Department and Maintenance Department have been to work with on these kinds of issues.

Academically, Scott is doing great, consistently maintaining an 3.2 grade point average. He likes his classes for the most part and feels he is learning a lot. He arranges for live captioning and note-taking in all his classes, which is very helpful to him.

If all goes according to plan,  Scott will graduate in the spring of 2018 with a bachelor of science degree in software engineering. He will either get a job or continue on to get a master’s degree.

It just amazes me at how fast the time has gone and how much progress in confidence and self-sufficiency Scott has made since he was an anxious freshmen. WE’RE SO PROUD OF HIM!!!!!!

High School Graduation, 2013!

Scott is graduating from high school on June 7, 2013. This is a momentous milestone for any young person, but is especially meaningful to us. Four years ago, when Scott’s health began to deteriorate, we didn’t know if he would live to see this day. We are so excited and happy for him, but also sad that his elementary and high school years are coming to an end. We plan on having a party to celebrate his graduation and his life. You are all invited! Check back for specifics.

College Plans, 2013

Scott plans to attend Rochester Institute of Technology (RIT) in Rochester, NY, in the fall. In addition to having an excellent software engineering program (which Scott is majoring in), RIT has many support services for disabled students, including those who are deaf or hard of hearing. The National Technical Institute for the Deaf (NTID) is located at RIT and Scott will be able to take advantage of services that are routinely offered, such as live captioning. There are also opportunities for speech therapy and sign language instruction. We are very excited about Scott’s college choice and think he will be very comfortable there.

Driver’s License, 3013

It was a real milestone for Scott when he passed his driver’s license test early this year. It’s great to have another driver in the house and Scott enjoys going off on his own to visit friends, do some shopping, and take his little sister out for ice cream. He has no vehicle modifications, although with the limited use of his left hand, he has to do more with his right hand. He is a good driver and knows that he has to take things a little slower.

Make A Wish, 2013

We met with representatives from Make A Wish earlier this year and discussed some possible wishes for Scott. They are investigating these and determining what’s feasible. The tentative plan is to have the wish fulfilled this summer.

Character Counts Recognition Award, 2012

Scott has been selected to receive a Character Counts Recognition Award from the municipality in which we live. The award honors residents who “promote and model good character through their service and actions in outstanding ways” and who are rarely publicly recognized. Unbeknownst to us, one of Scott’s former teachers nominated him for this award. Scott is truly honored. The ceremony was Tuesday, Oct. 23, 2012.

DogFest, 2012

Thank you to everyone who supported my walk on October 27, at DogFest, a fund raiser for Canine Companions for Independence (www.cci.org). I was the top fundraiser with a total donation amount of approximately $800!

CCI is a fantastic organization. It is a national, non-profit organization that trains assistance dogs for people with disabilities and provides the dogs at no cost to the individual. Scott is interested in someday having a CCI dog.

Make A Wish, 2012

We have a wonderful story about Make-A-Wish that involves Scott’s friend, Rachel K. Rachel and Scott met as freshmen in high school, less than a year after Scott’s neurological symptoms appeared and his hearing worsened. He was apprehensive about how high school was going to go—it was a different school, different teachers, and a much larger student body.

Rachel and Scott had a couple of classes together and struck up a friendship, which he really enjoyed and was grateful for. Scott eventually told Rachel about his health problems and the many tests he had suffered through and no diagnosis, etc. Rachel was very accepting and supportive.

Then, Rachel told Scott that she also has a life-threatening illness (which we won’t name to protect her privacy). At this time, there is no cure for her illness, although there is research and drug development going on. The life expectancy for people with this illness is about 30 years.

Their health issues have resulted in a strong bond between Scott and Rachel. They can understand each other in ways that most teenagers simply cannot relate to. They remain good friends today.

In early 2012, Rachel qualified for a Make-A-Wish wish. According to her mother, she struggled for several months to come up with a wish that would be the most meaningful for her. Finally she did: she wanted whatever medical resources necessary—doctors, researchers, hospitals, etc.—to be pulled together to find a diagnosis for Scott.

We were simply blown away by her generosity and selflessness. What a dear friend Scott has and how lucky he is to have a person in his life who cares for him so much! Scott would, of course, wish for a cure for her. But, understandably, Make-A-Wish can’t honor wishes for medical interventions. So with deep gratitude, we encouraged Rachel to choose another wish for herself. She did and recently that wish was fulfilled. From what we’ve heard, it was awesome and we are very happy for her.

Rachel as already given Scott the greatest gift she can—her friendship. We will continue to hope that both Rachel and Scott will benefit from treatments and perhaps cures in their lifetimes.

Computer Programming

Scott is an avid programmer. He fell in love with programming at the age of 13 and began teaching himself various programming languages. Often, when we went in to tuck him in at night, he would be reading some three-inch thick book about Python or C++ or some other language. He currently knows 20+ languages, all of which he taught himself.

Although Scott would be a programmer even if he didn’t have hearing or neuromuscular issues, programming can be refuge for him. He doesn’t have to have acute hearing, doesn’t have to struggle to communicate, doesn’t need to be able to run or even walk well. He’s taught himself how to use the keyboard primarily with his right hand since the movements with his left hand are slow and unpredictable. Even so, he can type faster than most of us with two good hands. In the online community of forums, where Scott often gives advice or assists other members with their programming problems, his physical issues are non-existent. In the world of computers, he feels strong and nimble and free.

Here are some highlights related to Scott’s interest in programming:

Real-world Project (2013). In the fall of 2012, our local school district approached Scott about developing an online application for standardizing teacher evaluations in accordance with state requirements. Scott agreed to be the project leader, which involved designing the application, establishing project specifications, working with the assistant principal responsible for the project, coordinating the work of other student software developers, creating the user interface, and writing code. Project status: 96% complete.

Meeting with Tom Anderson (2012). An acquaintance put us in touch with good friends of theirs, Tom Anderson and his wife, Marianne Anderson, who worked at Microsoft in the early days of Windows and Excel. Tom was Program Manager on such products as Windows 3.11, Windows for Workgroups, Windows 95, and Internet Explorer, among other projects. Tom is now working for Research in Motion as a Senior BlackBerry Developer Evangelist. Marianne is a technical/business/social media/web content writer.

We were thrilled when Tom and Marianne stopped in to visit us for a couple of hours in October 2012, regaling us with stories from their days at Microsoft and working with Bill Gates to telling us about what they’re currently involved in. They kindly talked to Scott about his programming interests and also reviewed a few of his projects. It was an enormous thrill for Scott and he really appreciated their comments and feedback.

Andrew’s Leap (2012). In the summer of 2012, Scott participated in Andrew’s Leap, a computer enrichment program for high school students that is run by the Computer Science Department at Carnegie Mellon University in Pittsburgh, PA. Participants must take a qualifying exam to be accepted into the class. Hundreds of kids take the exam, but only 40 were accepted in 2012, so we were thrilled when Scott made it in.

The full-day program lasted seven weeks and consisted of lectures by CMU professors and graduate students, presentations on research and real-world projects ongoing at CMU in the field of computing, lab work, and field trips. He particularly enjoyed the trip to Google Pittsburgh, where he saw first-hand how pampered the programmers are. That’s definitely a place where he’d like to work!

Scott was assigned to the advanced programming track in Andrew’s Leap where he studied data structures and dynamic programming. For his final project, Scott created a virtual Etch-A-Sketch that mimics the appearance and drawing capabilities of a real-world Etch-A-Sketch. He also gave his Etch-A-Sketch the ability to render imported images in the toy’s style.

Other Programming Projects. Scott’s computer projects include those he has done to fulfill school assignments and those he’s done for his own pleasure and fun.

School assignments include:

• Etch-A-Sketch emulator
• Asteroids game
• Black Jack game
• Destroy My Computer game

Recreational projects include:

• Game server emulator
• Specialized calculators

Professional projects include:

• Order-taking system for our local YMCA
• Website for former teacher
• This website

Inspiration Award, 2009

At Scott’s eighth grade graduation, in the spring of 2009, he was presented with the Inspiration Award by his social studies/history teacher. The award was given to him on behalf of the teachers and administrators at his school, who daily witnessed his optimism and sense of humor in the face of the degeneration of his physical abilities. His perseverance and drive to continue to live life as normally as possible were inspiring to many. Scott was not aware ahead of time that he was going to be receiving this award and we had only the barest inkling, so it was an almost overwhelming surprise. We are all grateful to the teacher who thought of recognizing Scott in this way as well as the teachers and administrators at the school who supported it.