Friday, November 14, 2014

100th Special Needs Spotlight! || Staci Mannella


     photo Allison Frantz

You guys, I am really excited, honored and thrilled to be presenting my 100th Special Needs Spotlight today. (Cue trumpets!) This is a pretty exciting moment for me and I just want to thank everyone who has supported this series over the years. Thank you for reading, commenting and sharing these stories. Thank you for emailing me and telling me how you were able to apply something you learned in a real life scenario or for simply telling me you enjoy the series and to keep up the good work. You're encouragement has meant the world. And a huge thank you to all my families who have participated in the spotlight by sharing your stories, your children, your families, your heart, your aches, and your triumphs over the years. It has felt like such a gift that you've allowed me into your collective worlds. So thank you. I thought it was appropriate that we have an extra awesome spotlight for the big 100 so please welcome Staci Mannella a member of the 2014 US Paralympic Alpine National Team! Enjoy!


Staci Mannella has astounding vision although she is visually impaired. The eighteen-year-old member of the U.S. Paralympics Alpine National Team has proven that her dreams are limitless no matter what her visual acuity. Staci was born with achromatopsia, a genetic eye condition that causes serious light sensitivity, poor visual acuity, and partial color blindness. She has been skiing for almost all of her life, and has been competing on the national and international disabled ski racing circuits for over six years. Her career thus far has included four national championship titles, a world cup gold medal, and the opportunity to represent the United States in the 2014 Sochi Paralympic Games. This rising star intends to drive forward in hopes of competing and medaling in the 2018 Peoyong Chang Paralympic Games.


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Miggy:  Hi Staci! So exciting to have you here today for my big 100th spotlight!  This is a very exciting moment for me, so thank you for participating and for sharing your story with us.  First please educate us about your condition.  I know you're blind (and in fact is that even the correct terminology?) but can you give us more detail--do you see any shapes, colors, tones at all?  Has your condition progressed over the years?  I know your parents had you diagnosed with Achromatopsia at 4 months old--what are some of the signs and symptoms for parents to look for?  Is there a range as far as how it affects people?  Any treatments?  


Staci:  Yes Achromatopsia is a genetic eye condition that has left me legally blind. It is stable (not degenerative) so I have had almost the same vision my entire life.  Achromatopsia has left me with poor visual acuity, partial colorblindness, and an extreme sensitivity to light.  My parents saw that I had nystagmus as a baby and that was their first hint that I had an eye problem.  I have incomplete achromatopsia.  People who are complete achromats are completely colorblind.  There are no treatments but I do wear dark brown contacts to help my eyes filter out the light.


Miggy:  Going back to your childhood tell us what it was like growing up with achromatposia?  At what age did you realize you were "different" and what impact did that have on you?  What about your family life?  How were you treated and what kind of support did you have at home?  I'm always interested in hearing adults with disabilities talk about what their parents did right and what perhaps they could have done better during their formative years.  


Staci:  I have been aware of my visual impairment for as long as I can remember. There were some minor instances when I was bullied as a kid, but I've always had pretty thick skin so it all kind of rolled off my back. My parents have always been really supportive. They did a great job in giving me the help that I needed, while pushing me to become independent and successful. They never pitied me or felt sorry for me and I think that's why I am so confident and comfortable with who I am. They always forced me to have  a"can do" attitude. I think that is why I have accomplished so much.
   
                                                                                   
Miggy:   OK so lets talk about the fact that you are a Paralympic athlete!  That's amazing!  You've got two 6th place finishes under your belt from the Sochi games.  Tell us a little about your journey to the Sochi Paralympic team?  What type of dedication and training was involved over the years?  Did you ever want to quit and if so how did you keep moving forward?  Any plans for the 2018 games?  :)


Staci:  I set a goal to make the Sochi team when I was twelve. There are not many twelve year olds that set a goal to make the Olympic team and actually do it.  Making the team is something I am really proud of because I worked really hard to get there.  I had to balance school and my athletic career, but somehow I managed it all.  There were definitely times when I wanted to stop skiing.  As a teenager, it was sometimes really hard to completely give up my social life and dedicate myself to a dream that seemed so far fetched.  But at the end of the day, ski racing is something I love and that fact overrides my hesitation.  Every athlete has days when they don't want to go out and train, but those are the days that count the most.  Those are the days when you have to dig deep and try harder, because that's when real improvement happens.  I am really lucky to be studying at Dartmouth where skiing can so easily be integrated into my academic plan.  My goal is to medal in Korea.


photo Getty Images

Miggy:  Do you have a moment, a lesson or a favorite memory from the games that stands out the most?   Any advice to young Paralympic hopefuls out there?


Staci:  Opening ceremonies was definitely a surreal moment for me. I think walking out with team USA and hearing the crowds roar was the exact moment it actually hit me how huge this actually was.  I was so honored just to be part of the games and to race against some of the most talented and accomplished athletes in the world. The experience as a whole was completely humbling and gave me such pride to be part of team USA.

I think the one thing I would tell athletes is to embrace every experience put in front of them.  I think all too often athletes get way too wrapped up in the competition that they forget the real meaning of sport, which is to have fun.  Some of my best friends in the world were also my biggest competition leading up to the games.  I have spent so much time with them, and have experienced so many once-in-a-lifetime experiences with them by my side.  I am so glad we never let race day competitiveness conflict with out friendship.  It's all about the experience and bettering yourself as an athlete.  The results will come if you work hard enough.

    photo Marcel Kuonen

Miggy:  Keeping in mind that you're a Paralytic athlete and that you're attending Dartmouth in the fall, it would seem that your disability holds you back very little.  But how does your disability affect your day-to-day life?


Staci:  How my disability hold me back is not something I generally think about.  I have been visually impaired my entire life so certain adaptations have just become a part of who I am.  As far as school, my biggest issue is reading.  I read everything on my computer where I can enlarge it, and I also use a speech software that converts longer readings into audio.  I will never drive, and I need someone to show me around in new places.  That's about it I think.  I am sure there are others I just can't really think of interesting ones haha!


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
Staci:  I love blind jokes! I don't even know where to begin with this. I guess one of my favorites is the blind high five, which is when two visually impaired people try to high five each other.  Blind humor is definitely a huge part of my life.


Miggy:  How can people best approach or respond to you or other blind people in general? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  


Staci:  I am not really the sensitive type so I don't know if I am the best representative for this question. Pretty much nothing offends me and I am also pretty willing to answer questions so as far as hurtful I don't think that really applies to me.  As a new guide dog user, I think its important for people to know not to pet my dog on harness or distract her.  I have places to go and things to do and that is dependent on her doing her job.  Other than that I don't think there is anything.

    photo Mark Leslie

Miggy:  If you could say something to the parents who just found out their child is blind, what advice would you give?


Staci:  I would probably tell them to treat them like any other child. The world is not going to baby them so neither should their parents.  It is true that being legally blind makes certain situations a little more difficult for me, but thats just something I have learned to dealt with and I encourage parents to instill this in their children as well.  If you work hard anything is possible, whether that be in school, or sports, or anything in life.

To read more about Staci check out her website www.stacimannella.com and her FB fan page here.  

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Staci thank you so much for taking time out of your demanding college life to participate in todays spotlight.  First, I'm so glad there is such a thing as blind humor!  I think this exists in a lot of special needs circles and I think it's great.  Also, I love your advice to parents of blind children not to baby them.  I can speak from experience that it can be tough, but I can also speak from experience that fostering that independent spirit can make all the difference between disabled and differently-abled.  And lastly, I love hearing about your hard word and dedication to get to make the Paralympic team.  And I agree, that is not something a lot of 12 year olds set their sites on and actually follow through!  So much respect for you Staci.  I can't wait to follow up with you in Korea--good luck and we'll be watching!  

Again you guys, thanks for the bottom of my heart.  And stay tuned... I have another exciting spotlight or two coming your way.  Wink.  As always if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com.  

Have a fantastic weekend!  


1 comment:

  1. great spotlight! i used to work at a guide dog school :-)

    ReplyDelete