[blindkid] NFBF-PARENTS NOPBC/FL PRESIDENT

Lenora J. Marten bluegolfshoes at aol.com
Tue May 12 01:38:59 UTC 2009


Hello All -

I posted this about a week and a half ago but a friend of mine said she didn't see it on this list, so I'm sending it again. I apologize if it's repetitive, I just want to make sure
everyone gets the chance to see it and e-mail me with any questions they may have. Thanks so much!  Lenora


I am announcing my candidacy for President of the National Federation of the Blind Florida Parents Division. I was saddened by President Debbie Brackett’s decision to step down. She has been a dedicated advocate for blind children and mentor to parents. As the parent of two blind children and sibling to another, I believe I have the ability and knowledge to develop our Parents Division into NFB’s finest!

 

When I took my oldest son for a check-up, I mentioned to our pediatrician that he was not focusing properly. He referred us to an ophthalmologist and after several tests; Jon’s blindness was diagnosed with bi-lateral optic nerve hypoplasia. It was explained that his optic nerves stopped growing before they were fully developed. We were told that this condition was not genetic, but highly unusual that it occurred in both eyes. We weren’t referred to early-childhood intervention services. We weren’t referred to a parent group. We weren’t given books, brochures or a list of references. We were just sent home. 

 

Like most parents faced with blindness, I was devastated and scared. But, I was determined. The first thing I did was call=2
0my brother who referred me to our local NFB chapter who in turn referred me to Foundation for Blind Children. We were able to meet some local parents and Jon was able to meet some kids just like him. 

 

Seven years later when Eric came along, we thought we were safe. We had been told Jon’s problem was not genetic. We had been told Allan’s problem was not genetic and completely unrelated to Jon’s. It was clear to us as Eric grew that he had vision problems. He had trouble focusing, his eyes moved like windshield wipers, he didn’t recognize people and ran into things. We went through almost 5 years of doctors and tests with every one of them telling us he could see. One doctor, a pediatric neuro-ophthalmologist, assured us Eric could see while suggesting that maybe he was just copying his brother’s behavior. When we tried to tell him that wasn’t the case, he said we just hadn’t noticed and should probably pay more attention. We were treated like ignorant parents.  It wasn’t until someone did the right kind of test, an extensive ERG, that we finally got a diagnosis. Eric has a rare cone-rod dysfunction that affected the genetic sequence of the cones and rods in his brain occurring in only one out of every one million people.  Most ophthalmologists only read about it. His eyes were perfectly fine, but his brain didn’t receive the picture.  

 

So why have I been a board member and now want to be President
 of NFBF-Parents? Why am I secretary for my local NFB chapter? Why am I continually looking for new fund-raising ideas?

 

 I’ve come to realize it’s not about me. It’s about my boys. They are blind children. They will grow up to be blind adults. I want to be part of a group that can help prepare them for that. Belonging to NFBF-Parents is essential. Blind children need blind role models. They need programs like Braille Readers are Leaders, Youth Slam, and mentoring programs. Our children need the NFB. 

 

 

I’ve come to realize that parents need the NFB just as much as our children. We need a place to turn to for answers and fellowship. We need to know that we’re not alone. We need other parents and blind adults to rely on. What you believe about blindness affects everything. You can be a loving parent. You can be a skilled teacher. You can sincerely love blind children and want them to succeed. But if you don’t truly believe in your heart that it’s okay to be blind, your child won’t either. 

 

It is my sincere belief that our kids can do anything and that by joining together; we can make a difference in the future of all blind children. The NFB is changing what it means to be blind. 

 

The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exists. If a blind person has proper training and opportunity, blindness
 can be reduced to a physical nuisance. A belief that blindness is much like other nuisances such as being left-handed, being too tall, too short, too heavy or too thin. Independence is a blind person’s right. 

 

Throughout my life I have tried to conduct myself in the above principles in my career, home and family life and volunteer work. After moving to Florida a short four years ago, I have been a member, board member and now Secretary of our local NFB-Greater Jacksonville Chapter. I became a board member of NFBF-Parents in 2007. I am also a member of PLP-Parent Leadership Program and Parent Action Committee at FSDB. 

 

In March 2009, with the help of our local NFB chapter, my husband and I organized and executed the 1st Annual Cut-a-Thon benefiting the NFB. We held the event at a local cosmetology school with 14 participating salons and over 40 stylists volunteering their time. 100% proceeds went to NFB-Jacksonville Chapter where part of that money will go to parents and children attending state and national conventions. Best of all, the officials at North Florida Institute were impressed with our group and more than happy to give back to the community. They have offered to host another cut-a-thon for us toward the end of the summer and again in March 2010. 

 

Since September 2008, I have been networking with parents in the Jacksonville/St. Augustine area in order to start a Saturday activity program for parents of blind children. This program will enable parents20and their blind children to interact, socialize and share information with other parents and blind adults. Families will be able to bond with other NFBF-Parents in our area along with our local NFB-Jacksonville Chapter. 

 

I now want to devote my time and energy to the continued works of NFBF-Parents. Our parents division has much to do and I want to make a difference. I want to see parents networking together, sharing experiences and concerns, through NFBF-Parents and local chapters. I want to bridge the gap between NFBF-Parents and local NFB. I want to see them working together in order to facilitate an easy transition for blind children as they grow into young adult blind men and women.  Together we can initiate activities throughout the year in addition to state and national conventions. We can convince educators that Braille is essential, necessary and always, always required. We can assist our children in learning to be independent. I want us to function as an integral part of the National Federation of the Blind in its ongoing effort to eliminate discrimination and prejudice against the blind and to achieve for the blind security, equality and opportunity. I am asking for your support for Lenora Marten as President of National Federation of the Blind Florida Parents. Thank you!

 

Lenora Marten

7175 Overland Park Blvd E

Jacksonville, FL  32244

904-777-5976 – home

904-229-9554 – cell

bluegolfshoes at aol.com 

 

 

 

 

 

 

=C
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