Meet Shelby Nurse and learn about her successful use of assistive technology.

Beginning high school is a very big step in a young person’s life and it can be very challenging. Luckily, for Shelby Nurse, the transition into high school was very easy and she is really enjoying the new school. Shelby is a fourteen year old freshman at her local high school in Florida. Her favorite parts of the school day are hanging out with her friends and learning. She especially likes learning about English and science and is looking forward to taking Biology next year so that she can dissect a frog.

One thing Shelby learned about at the beginning of the year was how to write resumes. She was understandably proud of herself when she was able to list her many accomplishments, including her work as an effective self-advocate and assistive technology educator. Shelby has already made presentations and speeches throughout the state of Florida and nationally at over fifty conferences and on television. She has also appeared before both House and Senate committees of the Florida Legislature. Shelby made her first presentation eight years ago when she was only six years old. She enjoys making these presentations with her father because she feels that it is very important for young people with disabilities to learn how to advocate for themselves. She wants people to be inspired into action by hearing her speak about how assistive technology has helped her get to where she is today.

Assistive technology has had an extremely positive impact on Shelby’s life and has helped her compensate for some of the effects of her Cerebral Palsy. She began using AT when she was barely two years old when she got her first power chair; at about the same time she started accessing games using an Apple computer. Her father felt it was very important to start her off young so that she would be able to grow and develop with the help of AT. Shelby uses a lot of AT at school and home, which is really helpful. She has been fully included in general education classrooms since she was in kindergarten. Shelby uses AT for mobility, writing, visual supports, accessing information and entertainment.

At school, Shelby uses a Dell laptop with a lot of software programs that help her with different subjects. She uses Kurzweil 3000 software to digitize printed materials, to write, take tests, and to study. She also uses it to convert text to speech that helps her access her textbooks and other school work. She uses Virtual Pencil software for algebra. On her laptop, Shelby uses Microsoft Outlook that replaces the typical hand written student planner, to help her organize her time and track assignments. Shelby recognizes that her AT tools are very powerful and without this technology she would not be able to keep up with her classmates. The laptop was provided to her by the school system for use at school, home and in the community.

Shelby’s AT use continues at home. The Nurses’ house was recently renovated to make it even more accessible for Shelby. They relocated the hallway that leads to both her and her brother’s bedrooms and enlarged the bathroom to include a five-by-five foot roll-in shower, a large soaking bathtub, and a wheelchair accessible sink with a hands free faucet that works great while Shelby is seated in her power chair.

Her bedroom closet is now accessible so she can pick out her own clothes. X10 and other environmental control devices were installed all over the house so Shelby can now use remote controls to open the front and back doors, turn on the lights, answer the phone, or call for assistance by using the house wiring to communicate with the various X10 controlled devices. After all of these renovations, Shelby has been able to become a lot more independent in her house, which she loves.

In addition to her “new” house, Shelby uses a lot of other AT devices at home. She has an Apple G5 iMac computer in her room, which she bought herself with money earned from paid speaking engagements. With it she accesses the Internet, uses instant messaging and sends emails. Shelby loves to use regular consumer items as AT devices. Last Christmas she was given an iPod; in addition to using iTunes for mixing her music, she also uses it as her alarm clock every morning. The iPod makes it possible for her to set her alarm clock independently while she is still unable to access a regular alarm clock. She also loves waking up every morning to the music she selected herself. Another way Shelby uses popular devices as AT is in her use of the speaker phone function on her telephone because otherwise she has trouble holding the phone and speaking clearly.

Since Shelby’s home is so accessible, she likes spending time there with her parents and younger brother, Jordan. She also enjoys having her friends come over to hang out. She says that the biggest obstacle her Cerebral Palsy causes is the fact that it is hard for her to go to her friends’ houses because they are not accessible. When not socializing at home, she likes going with her friends to the mall where she enjoys shopping.

Shelby is a very busy young lady, but she does find time to relax. In her spare time, she enjoys watching her favorite television shows, Seventh Heaven, Commander and Chief, and Laguna Beach. She also spends her free time learning effective ways to advocate for herself and for the assistive technology she needs. For example Shelby, along with her father, Tom Nurse, use the Florida state education standards, both for herself and when educating others as a tool to identify what a student is expected to do and to then help find options to access the curriculum for people with special needs. One good example of this is a simple assignment to construct a poster, which can be hard for some people with special needs. Instead of creating a traditional poster, Shelby had the bright idea to make a poster PowerPoint presentation, which was very successful. Shelby believes that it is important that the student be involved as much as possible in helping identify their own accommodations because this approach can help teach how to self-advocate without being hostile.

All of Shelby’s experiences are going to help her for the rest of her life. Currently, Shelby would like to go to college to become either a lawyer or a child psychologist. She wants to become a lawyer because she loves to defend or promote a position and is very good at it. She wants to be a child psychologist because she enjoys working with children. Whichever profession she chooses, it will be the right one for her.

Shelby has accomplished more in her lifetime than most twenty year olds. She is guided by her self-determination to eliminate the stereotypes that face people with disabilities. That is the one thing she would change about this world. By speaking and advocating for people with disabilities and AT, Shelby is helping to erase those stereotypes. She is an extraordinary young woman who is doing a lot for her cause and will continue to impact the world.

If you have or know of a child/teen who has experienced success through the use of assistive technology that would like to be featured, please contact us at aczapp@aed.org.

~ Thomas  J. Nurse – tnurse@me.com

“I am NOT perfect, but I will be there for you!”

February 12, 2000 my daughter, Johanna Rose is born. The first thing the doctor attending my daughter says is, “You know your daughter has Down Syndrome, correct?”   “Downs Syndrome?  What’s that” I ask…  He goes on to say that “it is a form of mental retardation. She will not develop normally, typically won’t walk or talk till she is seven or eight and may have many issues as well.”  I was stunned!  What do I tell my wife, Sherry! Why is this happening?  In addition the doctors were having trouble stabilizing her, her breathing was not right. So the whole rest of the morning (she was born @ 4:15am) I was going between my wife who was in pain in recovery and my daughter in the Pediatric ICU.  In between, I stopped by the chapel and prayed that this was all a mistake.  My sister and father in law also joined me in praying that this was all a mistake.

After 4 or 5 days of self pity I looked at my daughter and saw that I was going to love and enjoy her as long as I could. So she went to developmental preschool, we joined the support groups and I (we) learned to be parents again!  Yes, she was in the hospital a lot. I took her to the majority of them. I held her down while they took blood from her, x-rayed her, put IVs in her, stuck probes down her throat. All the while she would look right at me as if she did something wrong!. We took her to evaluations for therapies, went to countless meetings to have her included in regular classes in school, all the while giving her all the meds she needed to take.

But!  I was able to somehow pay for the meds, the co-pays for all the doctors and specialists we had to see. And yes, she started to progress “in her own time.”  She walks, runs, writes on the walls. All the things kids do. 

Yes we have to still give her monthly (now weekly) IV injections so she can stave off infection, but I thank the Lord every day she is with us! So were my prayers answered? YES THEY WERE!  I asked for her to be alright. And she is.

 So now, as on that first day, you knew you would never let harm come her way. Your heart skips a beat every time you look at her as you watch her sleep. You hope & pray to do everything right, although you may make mistakes along the way.

You often wonder what she will grow up to be. I’m sure you will be there to always catch her if she fails because Daddy’s little Angel she will always be.

~ Rafael A Arteaga – August 1, 2011

3900 Saturdays

3900 Saturdays…… Went to the movies and fixed dinner for my daughter….. I made this one count…..

“You’re busy with your job. I’m sure they pay you well but it’s a shame you have to be away from home and your family so much. Hard to believe a young fellow should have to work sixty or seventy hours a week to make ends meet. It’s too bad you missed your daughter’s dance recital,” he continued; “Let me tell you something that has helped me keep my own priorities.” And that’s when he began to explain his theory of a “thousand marbles.”

“You see, I sat down one day and did a little arithmetic. The average person lives about seventy-five years. I know, some live more and some live less, but on average, folks live about seventy-five years. Now then, I multiplied 75 times 52 and I came up with 3,900, which is the number of Saturdays that the average person has in their entire lifetime. Now, stick with me, Tom, I’m getting to the important part.