Foundation Fighting Blindness, I am Not Against Medical Research for a Cure for Degenerative Eye Conditions, Just Your #HowEyeSeeIt Method of Raising Money

Disclaimer… this is an emotionally charged post, so pardon my neglect to catch all my typos.  I just got off the phone where I was interviewed by a woman in the Louisiana Tech Professional Development and Research Institute on Blindness.  This woman is currently in the graduate program for teachers of blind students.  It wasn’t until I was recounting with her what it was like for me as a child with vision loss, not until I shared with her my struggles with self-worth, struggles in school, and comical attempts to hide my blindness that I realized why I so strongly oppose the Foundation Fighting Blindness Campaign.

Some of you have been following my blog since the beginning over five years ago, and some of you have just recently discovered it.  For my dedicated readers, I apologize for letting so much time go by between real posts.  Life gets real crazy when you’re busy living it, and before you know it you find yourself in the first days of fall and you’re still working on your,” How I Spent My Summer Vacation,” blog post.

So what is all this hype on the Foundation Fighting Blindness #HowEyeSeeIt Campaign exactly?  Basically, FFB is asking people to partake in their blindfold challenge to attempt to see how hard it might be to sort coins, keep track of children at a park, and do every day tasks while wearing a blindfold.

Let me get something straight.  I am not opposed to Foundation Fighting Blindness and medical research for degenerative Eye conditions.  I may not have an eye condition that effects my retina, but both my daughter and I do have a degenerative eye condition.  It may or may not come as a surprise to many of my friends and family that I have lost a significant amount of eyesight.  Does the possibility of loosing every bit of my remaining eyesight scare me?  Absolutely not!  Does the possibility that my daughter might also lose a majority if not all of her eyesight scare me?  No, not at all!  People ask these questions to my husband all the time who works in EMS, so he’s seen his share of tragedy, and his answer is usually something like, “Whether or not she looses her remaining eyesight doesn’t change the person she is.  She’ll still be an awesome mom, and partner in life.”

So here’s a little bit about me, my story, and why I oppose the Foundation Fighting Blindness #HowEyeSeeIt Campaign.   Note to the blind people reading this that the eye in #HowEyeSeeIt is spelled with the word “Eye,” like eyball and not with a capital I.

My family immigrated to the U.S. just before my second birthday.  After fleeing Cambodia, spending years in Red Cross refugee camps in Thailand and the Philippines, my parents found themselves in Northern California searching for an answer to their daughter’s vision loss.  They barely spoke the language, drove up and down the state seeking specialist and being told things like, “She’ll get her eyesight back,” to “We have no idea what caused this,” to “She may possibly one day  go blind.”  I can’t even imagine to put myself in their shoes.

My first memory of my blindness making me feel different, and beginning the, “Fake it till you make it,” phase of my life came in Kindergarten.  A boy held a book to his face and asked me why I read like that.  So, from then on I pretended to see, pretended to be what I wasn’t, pretended that nothing was wrong.  I went through the motions of pretending to do my school work in the classroom and spent hours on hours really doing it at home.  It finally got to where the students and teachers would just skip over me when it was time to read out loud in class.  My blindness was never spoken about, never acknowledge, I, we, just pretended it wasn’t there.

One question I was asked tonight was, “If you could go back in time and change one thing, what would it be, and what wouldn’t you change.”

My response?

If I could go back in time and change one thing, I would have made sure that my mom and dad found the National Federation of the Blind during those first scary years dealing with their daughter’s blindness.  As for what I wouldn’t change, I would not change the fact that I am blind.  Without my blindness, I wouldn’t have a vast network of friends whom I consider family all over the country.  Without my blindness, I would not have had the opportunity to travel to China to speak to blind children.  Without my blindness, I probably would have never met my husband and had my beautiful children.  Without my blindness, I would not be an advocate for blind people and blind children like my own daughter.

The #HowEyeSeeIt blind fold challenge is degrading to all blind people.  It perpetuates the low expectations and negative misconceptions about blindness.  For the person facing the possibility of loosing their eyesight and going blind, these videos make blindness and blind people look like blindness is the end of the world.  I’ve read comments from supporters of the campaign that blindness was so scary for their friend, it nearly drove them to ending their life.  The loss of eyesight is not the end of one’s life.

The worst part of this whole campaign is, in this current day and age blind parents are being questioned on their abilities merely on the fact that they are blind.  Babies are being taken from blind moms because social workers believe the blind mom has no possible way of knowing how to take care of a baby.  Meanwhile, crackheads child abusers, and neglectful parents continue to keep their children.

As the hour is getting late and my kids need me, I will leave by saying, “That’s all I have to say about that.”

Anti #HowEyeSeeIt campaign

This is my contribution to the Foundation Fighting Blindness #HowEyeSeeIt campaign. I do not support this campaign. As a blind mom, parent to one-sided child, one blind child, this campaign is pretty much saying that blindness is something to fear. At the National Federation of the Blind 2016 National Convention, President Mark A. Riccobono addressed the misconceptions of fear and blindness and his banquet speech. You can read his blog about it at this link. https://nfb.org/blog/vonb-blog/challenging-fear-blindness. My husband, Aaron Rupp, also recently had an article published in, “Future Reflections, this is a publication put out by the national organization of parents of blind children and American action fund for parents and educators of blind children. His article also talks about fear. https://nfb.org/images/nfb/publications/fr/fr35/3/fr350315.htm ​

Release to rise strong and move forward while getting toned legs and a great butt

Taking a deep breath and giving myself permission to cry. Sometimes being a blind parent as well as a parent of a blind child is tough. Acknowledging things like this is not a sign of weakness, but the release needed to rise strong and move forward. Tonight’s event of experiencing Brene Brown lecture live couldn’t come at a more perfect time for me as it’s only the third day of school for Marley and I’ve been facing mountains each day to climb over just to make it to the next. Bright side of climbing mountains, is I have the tools to support me like great friends to call on, a great general ed teacher who is well organized, proactive, and ambitious about Marley’s education, a wonderful vice principal and my own knowledge of Braille and advocacy background. This year will only make me stronger. Climbing mountains also makes for toned legs and a great butt.

Kite Flying

IMG_5102Picture your child standing in a grassy field, hair blowing in the wind, face lifted up to the sky, a huge smile across their face, and arms outstretched as they hold onto the tugging strings of a kite.  Flying a kite is an activity all children, whether sighted or blind can enjoy.  With a little patience and guidance, the uplift of the right gust of wind can take colorful tails up and over impossible heights.  As parents, we might fear failure, or a crash and burn, but if we put our trust in the wind, our children can not just fly, they’ll flutter, float, dance, and soar freely in the sunshine.  

 

I write a monthly newsletter for parents of blind children, and this was originally written for the BEE; Early Literacy and Movement for Young Blind Children, NFB Braille Reading Pals Club & NFB Early Explorers Program.

 

Family Information Raising Expectations

Last summer, I was elected to serve as a board member on the board of directors of the National Organization of Parents of Blind Children.  As many of you know, I am not just a blind mom, I am also a parent to a blind child.  Serving on this board has been extremely rewarding.

One of the projects I’m honored to be a part of is the Family Information Raising Expectations Teleconferences.  Since January, we have hosted monthly calls on such topics like,

What is the National Organization of Parents of Blind Children?

Transitions

NFB National Convention and the Annual Conference of the NOPBC

Educational Programs of the NFB Jernigan Institute

Low Vision

and this evening, I just hosted the call on

Blindness and Babies, Toddlers and Transitions.

Some may wonder why I spend so much of my time, energy, and passion on this organization.  Why not?  Why not be a part of change?  Why not help parents of blind children find answers to how to raise a blind child?  Why not connect experts in the blindness field with parents who have no idea where to turn since their so called professionals aren’t providing them with the answers they need?

I do it all for the same reason I put myself out there in writing this blog.  If the message only reaches a handful of people, than it was worth the work.

To the grieving parent who has just been told that your child will never see, you have nothing to fear.  Don’t treat your child any different from their sighted peers.

To the child with low vision feeling lost and confused.  You are not a broken or incomplete sighted person.  Faking it is exhausting, and the sooner you embrace non visual techniques, the less time you’ll be second guessing yourself.

To the blind parent unsure of how they will change a diaper, feed their child, keep track of a toddler, or help their kids with homework.  You are not the first blind parent!  Hundreds of thousands of blind parents all over this Earth have raised children.

To learn more about the National Federation of the Blind or the National Organization of parents of blind children, or to listen to the calls which are being produced into podcasts, visit www.nfb.org or www.nopbc.org. Continue reading Family Information Raising Expectations

Dare to Discuss…”Whole Hearted Parenting, Daring to Be the Adults We Want Our Children to Be.”

Earlier this year, I joined my neighborhood mommy group book club.  I found myself reading novels, I would have never chosen on my own.  Although they were entertaining, and filled up time, they weren’t anything like the self transformational reading I’ve sort of found addicting. The great thing about reading these books is, I’m never at a loss of what next to read.  I’m always left with a list of books referenced in that current read.

I dare my readers to join me in the book, “Daring Greatly, How the Courage to be Vulnerable Transforms the Way We Live, Love, Parent, and Lead.”  by Brene Brown.

If you are not familiar with Brene Brown, take a look at her famous Ted Talk on the Power of Vulnerability.  I’ll even make it easy for you and post the video right here at the end of this post.

After reading Brene’s book, “The Gifts of Imperfection,” and now, “Daring Greatly,” both my husband and I have noticed a significant transformation in how I live, love, parent and lead.

I found what Brene shares in chapter 7 on whole hearted parenting, daring to be the adults we want our children to be, hitting close to home in recent events.  In this chapter, she asked this question to some of her research participants…

“What do parents experience as the most vulnerable and bravest thing that they do in their efforts to raise whole hearted children?”

“Letting their children struggle and experience adversity.”  was the answer she found across the country.

I pose this same question to my readers.

Let me share an example from my youth.  Did you know that it wasn’t until the age of 15 years that I learned how to use a knife and fork to cut my food?  I was attending a summer program for blind and visually impaired middle and high school students at the California School for the Blind.  This was my first time ever attending a program just for blind and visually impaired students.  The first evening we were served chicken and I had no idea how to cut the piece of meat.  I was taught the simple method of finding the edge of the chicken with my fork, stabbing a piece, and cutting around the fork.  Many of my friends would find that to be quite a surprise because we always joke that their blind friend is the one who slices the thinnest cheese, can chop onions with her eyes closed, and cuts the prettiest watermelon displays.

At 22, hacking away the umbilical cord my parents had tethered on to me for so long.  Leaving the nest with no safety net below, literally flying half way across the country I took my first steps towards independence when I began my blindness skills training at the Louisiana Center for the Blind.  In no way do I want to sound resentful.  You see, I come from a traditional Cambodian family.  I am their first born, and I happened to have a little trouble seeing.  It was only natural for them to want to protect me as long as they could.

As a parent now, I try to model the person I want my children to be by being that person myself.  I also trust that my children will only be strong, resilient, compassionate, whole hearted human beings through the lessons learned in the adversities they’ll face.

“I’m Not Just a “Blind” mom. I’m a (insert adjective here) Mom”

I was asked to write a piece about parenting for the National Federation of the Blind Blog.  Below is what I wrote which was publish on Mother’s Day.  What kind of mom would you describe yourself, or your own mom as?

There are many different kinds of moms out there.  The crunchy mom who makes her own almond milk, the crafty mom who makes every birthday party decoration or teacher gift from scratch, the soccer mom, the yogi mom, the play group mom, the PTA mom, the new mom, the empty nest mom, the ___(fill in the blink)___ mom.  Me, I may be seen in my neighborhood or at my daughter’s school as the blind mom, but I’m so much more than just that.

I am no expert, but having been a mom for over six years now, I can safely say I feel comfortable writing about motherhood.  In the words of Malcolm Gladwell, “Practice isn’t something you do when you’re good at something, practice is something you do to get good at something.”  I use this quote on my six-year-old daughter and four-year-old son all the time when they complain about not wanting to practice reading, tying their shoes, riding their bikes, or the words to a song.

The same thing can be said about parenting.  Being a parent is tough.  Popping out a baby doesn’t make any mom an expert.  There is no manual that pops out along with that baby.  Social workers have no right telling a new mom that she’s unfit to take care of her baby because she may be having trouble getting her newborn to latch on.  Half of the new moms out there have difficulty nursing.  Motherhood is beautiful and scary for all moms whether blind or sighted.

When I first became a mom, I struggled like many new moms with postpartum depression.  I felt isolated and alone.  My husband worked long hours. He was sometimes gone for seventy-two hour shifts at the fire house.  I had no family in town to help me.  I had a baby that cried all the time, threw up all the time, and went from living in a condo in the city to a house in the suburbs.  A few months before my daughter’s first birthday, I’d had enough of feeling sorry for myself.  The self-pitying, self-loathing, frumpy, sad stay at home mom had to go.  That wasn’t the Terri my husband fell in love with, and that wasn’t the person I wanted my daughter knowing.  In order to change, I had to get up, get out, and get active.

I got up out of my smelly clothes, found a mommy meet-up group, started my own neighborhood mommy group, got back involved in the National Federation of the Blind, and I found the more I did, the happier I became.

Human beings are social beings.  We weren’t meant to be isolated in stucco dwellings, gated away from the rest of the world only to communicate through the internet.  Our mothers before us raised their children as a village, so we new mothers must make our own villages today.  Whether that village is a mommy group, a church, aunts and grandmothers, or our Federation family, we must support one another so that not only our children stay healthy and happy, but that we as moms are also healthy and happy.

That sad, lonely, mom version of me is long gone.  Today, I am a happy, healthy, outdoorsy, creative, innovative, assertive, nurturing, organized, engaging, silly, sassy, stylish, stay at home mom living the life I want.

You can find this originally posted at https://nfb.org/blog/vonb-blog/i’m-not-just-“blind”-mom-i’m-insert-adjective-here-mom

The trials, triumphs, tears, and travels of a stay at home mom in the suburbs of Sin City

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