Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based on what his Dad and I thought.  When we discussed living away from home:  I said: “Jon you can live away from home if you want, we will just need to hire a personal assistant to help you get ready in the morning and at night.”   Jon said, “Yeah I know Mom, I’m not sure if I’m really comfortable with that option.”  I said “OK; think about it for a little while and let me know”.  One night Jon announced that his college applications would focus on colleges within commuting distance.

During high school he had a close group of friends and enjoyed his high school years. Some of his close friends went
away to school. I wondered how he would make the transition into the college setting.  Would Jon make friends?  Would he be liked for his sense of humor and his bright mind or would he just be viewed of the guy in the wheelchair? Would he be able to keep up with classes? Would he find a work-study job and be able to work and keep up his studies?  Most of these questions all parents consider when their child is heading off to college and their own independence.

Jon started his college career with a four day orientation.  Jon chose to attend Nazareth College which is a small private college that is 60% female and 40% male. Jon liked the ratio of girls to guys. Jon was busy from 7:00am  to at least 10:00pm for those four days. The schedule for orientation was enough to tire and overwhelm me.  However, he seemed to thrive with his new found independence.  At the end of each orientation day he arrived home with a huge smile on his face and said he really enjoyed his day. He used his manual wheelchair for orientation and the kids took turns pushing Jon to various events. We met with the Disabilities Office to make arrangements to store Jon’s power wheelchair on campus. He only uses the power chair to navigate campus.  A storage place was found on campus where the chair could be charged back up at the end of the day.

My worries about transitioning to college were really exaggerated. This was highlighted when my husband came home after dropping him off, and said that he met the Dean of Academics. My husband helped Jon pick up his wheelchair and get his book bag hooked onto it. Jon took off without turning around to say bye Dad. The dean was watching this like a slow motion movie and said to my husband “I just love seeing new students adapt to college so easily.” After a few weeks, Jon was pretty well entrenched in the college community.  He tried out for the Improvisational Comedy Club, he didn’t make it but enjoys going to the shows.  He was elected the Vice President of the Commuters Association, he joined the History Club.  He did have a difficult time finding a work study job, but did find one for the fundraising Phone-a-Thon.

Jon was at home when he had his telephone interview for this job, I overheard some of his answers.  “My experience at
Nazareth so far has been really wonderful.” “I chose Nazareth because I wanted to study Biology and I thought the sciences programs would be pretty good, since the college has a Ph.D. program in Physical Therapy.”  “I really like the campus, I have a physical disability and use a power wheelchair; I really like the size of the campus and it’s easy for me to get around.”  

Jon has made the transition to college fairly easily. He has gained some independence despite Duchenne.  Like
Aeschylus, Jon doesn’t appear to be afraid of storms, for he is learning to sail his ship.

 

 
Jon at his Freshman Seminar Field Trip.

 

 

 

 

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Comment by Christine Piacentino on October 13, 2011 at 11:13pm

Thanks Stephanie, I appreciate the support.  I hope my story helps other families navigate life with Duchenne and find hope for their son's.


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Comment by Stephanie Matthes on October 13, 2011 at 9:49am
This is such a great blog Christine! Thanks so much for sharing... I'm sure many families will appreciate your story.
Comment by Christine Piacentino on October 9, 2011 at 10:28pm

Keith I'm glad that you found this post enlightening and inspiring.  I hope that a little slice of how Jon and my family deals with life Duchenne helps others deal with Duchenne also.

Comment by Keith Van Houten on October 9, 2011 at 7:08pm
Thank you for posting this.  People sharing their experiences with college here and on Facebook has been enlightening and inspiring.

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