Comfort in the Little things When You Have Control Issues

Many people will probably be surprised to learn that I’m not that easy going, put together person they think I am.  That’s the stage me.  That’s the straight hair me.  In reality, I’m messy, suffer from anxiety, and struggle with control issues.  I find comfort in my tiny daily rituals like straightening my hair, and applying lotion to my sensitive dry desert dwelling skin.

My trusted companion of almost nine years has left me high and dry.  Actually, she’s left me frizzy and fried.

I feel completely lost without that daily piece of control.

I know, it’s sad, but it’s the little things in life that count, right?

So, my ten minutes of me time in the morning help to ground and balance me just a little bit.

I don’t like change, and I don’t like pulling the trigger when it comes to shopping for myself, but like the blue butted monkey in the Lion King says, “It is time. ”

So, the question is, do I buy the same Chi Pro for $87, or do I get the cute purple one for just $20?

How Do You Measure the Value and Worth of a Stay at Home Mom?

This question has been coming back to me quite often these last few months.  While California has been experiencing an abnormally wet winter, the state of my emotional self has also been experiencing a rather wet one too.  This is a post I have wanted to write for a while, but the emotional rawness that accompanies the words cause me to keep pushing it back.  However, like I’ve learned about myself time and time again, the only way for me to deal, process, and heel, is to put it all down into words.  So, here I go.

While everyone around us were in celebration of love, family, peace, and making memories over the holidays, a storm was brewing beneath the surface.  Every now an then the thunder rolled and lightning would strike an unsuspecting victim.  Why was I feeling this way?  Where was this self destructive, self pitying, self loathing, self coming from?  It was time to turn on the lights and take a long hard look in the mirror.

While my mother has always cautioned me to not air out my dirty laundry, and to, “Keep the fire in the house,”  Her inquiries of, “What’s going on?” set off the water works yet another time.  This time, they kept flowing and flowing.  Sometimes, all you need is just your mama.  In this case, my mama helped me to pull up the heaviness of my being for some fresh air in the light.

My mama, you see, is the strongest most courageous woman I know.  She survived the Cambodian genocide of the 1970s. She married my dad in a refugee camp in Thailand, the same camp where I was born.  She traveled to a country with a toddler, and another baby on the way, without a penny to her name, and not knowing a single word of the language.  And now, she lives 10 houses away from me, enjoying retired life after running a thriving business for twenty five years.  That’s my mama.

Me, I am just a stay at home mom.

That sentence there, that deserves me a slap to the face.  That’s that self loathing, self destructive, self pitying, self I dislike.

I am not just a stay at home mom.

I have sacrifice a professional career, so that someone else does not have to raise my children.  It is up to me to create caring, compassionate, and confident human beings who will make loving contributions to our world.  I keep their bellies, hearts, minds and dreams fed with nutrients.  I am grateful for a husband who provides for us and allows for me to be here.

In addition to all my work in the home, I dedicate countless hours to my passions.  A passion that does not pay in dollar signs, but pays in the number of lives changed through my work in advocating for the rights of blind people.

My two roles are causing imbalance, and my compass was washed overboard during one of the storms.

This husband of mine, the one who provides for us.  He has been the one to help me see the sad eyes I’ve been trying to cover up.  He is also the victim of my emotional storms and lightning strikes.  Why is it that we typically take out our turmoil on those closest to us?  He did not deserve my cold, mean, and hurtful behavior.  He responded by shutting down and tuning out.  This thus caused me to react with even more engine power as I search for land in the midst of my lonely seas.  It wasn’t until my behavior was causing both of us to question the stability of our marriage that I began searching inward to find some answers.

I was feeling resentful because I felt like I had no control.  I felt like since I did not contribute to the family financially I had no say in where our finances were being spent.  Thus I made withdrawals out of our emotional bank account and only depositing anger, bitterness, and sadness in return.

Yes, I know that is ridiculous.  In my head I know that I contribute so much more than can be added up in dollar signs.  However, when I’m in that storm, it’s really difficult to see the sunshine through the tears.  Recently I testified in a court case as an expert on blind parenting.  Because I don’t have a list of letters behind my name, I didn’t make hundreds of dollars an hour.  Because when I filed my taxes, I wrote, “Stay at home mom,” in the occupation field, I go back to questioning my worth in dollar signs.

I have posed the question to a few of my friends, and found their responses quite interesting.

How Do you measure the value and worth of a stay at home mom?

How would you answer that question?

Join Me on this Giving Tuesday in Raising Low Expectations and changing the Lives of Blind People

I’m sure many of my friends and family wonder why I put so much time and energy in spreading the message of the National Federation of the Blind.  The message that blindness is not the characteristic that defines you or your future.  Why am I so passionate about educating blind people and parents of blind children that the real problem is the low expectations, that those low expectations are what create the obstacles between blind people and their dreams?

This grass roots organization of innovative, imaginative, energetic, and inspiring individuals is the reason I am an independent and confident person today.  For the first twenty or so years of my life, I lived in shame and fear about my low vision.  I used words like legally blind and visually impaired to described my vision loss.  these low vibration words attempted to soften the blow of blindness in it’s political correctness.  Ironically, referring myself as visually impaired or legally blind,, suffering from low vision, led me to low self worth, low self confidence, and always wondering if everyone was seeing through my, “Fake it till you make it,” facade.   It wasn’t until I met positive blind role models, finally became literate at the age of 23 when I learned Braille, and embraced my blindness. I learned that I no longer needed to try to fit into a sighted world. Thanks to the endless support, mentorship, and love of my federation family I freely and whole heartedly identify with the, “B,” word.  I am proud to be blind, proud to raise my Marley to be her own self advocate.  Finally, I am proud to serve as the President of the National Federation of the Blind of Nevada.

It is my dream that one day that my Marley will live in a world where she will have complete access to her textbooks at the same time as her sighted peers.  A world where  she can independently use all electronic devices she comes into contact with from voting, to checking in at the airport, to shopping, to renting a movie on a Red Box machine.  I give tirelessly so that all blind children can one day have access to Braille instead of the 10% who are receiving Braille instruction today.  I dream of a world where blind parents no longer need to fight for their rights to raise their children because sighted social workers question whether or not a blind person can take care of a baby.  I ask you, my friends and family to give on this Giving Tuesday and support the efforts of the National Federation of the Blind.

 

To learn about some of our  year’s achievements and to make a donation, visit

https://nfb.org/blog/vonb-blog/national-federation-blind-reflects-another-successful-year-advocacy-blind

AN OPEN LETTER TO THE BUS DRIVER CONCERNING MY DAUGHTER’S CANE

Wednesday October, 5, 2016

Dear Bus Driver,

Just so you are aware, I write a very public blog.  By the time you have received and read this letter, a few thousand people have probably already read it.

I would like to address an incident which occurred on your bus on my daughter’s way home from school this afternoon.  Marley Rupp’s cane was taken from her by the kids sitting behind her.  Marley, knowing the rules of the cane, and the fact that no one has the right to take it from her, asked them to give it back.  The cane was pulled on and passed back and forth.  Before giving the cane back, the string was ripped off of the handle.  As Marley was leaving the bus, she did the right thing by telling you what had happened.  You, however, DID NOT, by telling her it was no big deal.

I understand that in your eyes, a string getting ripped off the top of my daughter’s cane was no big deal.  Here’s where you’re wrong.  It is in fact a very big deal.  We have had many battles with school district employees on the issue on Marley and her cane.  They were concerned that other children might get hurt because Marley is so young and might not know how to properly handle it.  This afternoon, those children on your bus who took my daughter’s cane could have very easily injured Marley or other children.  Marley has been taught to advocate for herself from a young age.  She proved this by both telling those children to give her cane back, and by telling you what happened.  You, simply disregarding her, and not addressing it with the other students shows ignorance and negligence.

As October is Blindness Awareness Month, and October 15th is National White Cane Safety Day, I feel it it is my duty to educate you, so that you may educate those children you drive.  Before driving off with my daughter in your next busload, I ask you to please address Marley’s cane, the fact that it is her tool, and absolutely not to be taken from her by anyone.

Sincerely Yours,

Terri Rupp

White Cane Safety Day: A Symbol of Independence

by Marc Maurer

In February of 1978 a young blind lady said, “I encounter people all of the time who bless me, extol my independence, call me brave and courageous, and thoroughly miss the boat as to what the real significance of the white cane is.”

The National Federation of the Blind in convention assembled on the 6th day of July, 1963, called upon the governors of the fifty states to proclaim October 15 of each year as White Cane Safety Day in each of our fifty states. On October 6, 1964, a joint resolution of the Congress, HR 753, was signed into law authorizing the President of the United States to proclaim October 15 of each year as “White Cane Safety Day.” This resolution said: “Resolved by the Senate and House of Representatives”, that the President is hereby authorized to issue annually a proclamation designating October 15 as White Cane Safety Day and calling upon the people of the United States to observe such a day with appropriate ceremonies and activities.’

Within hours of the passage of the congressional joint resolution authorizing the President to proclaim October 15 as White Cane Safety Day, then President Lyndon B. Johnson recognized the importance of the white cane as a staff of independence for blind people. In the first Presidential White Cane Proclamation President Johnson commended the blind for the growing spirit of independence and the increased determination to be self-reliant that the organized blind had shown. The Presidential proclamation said:

The white cane in our society has become one of the symbols of a blind person’s ability to come and go on his own. Its use has promoted courtesy and special consideration to the blind on our streets and highways. To make our people more fully aware of the meaning of the white cane and of the need for motorists to exercise special care for the blind persons who carry it Congress, by a joint resolution approved as of October 6, 1964, has authorized the President to proclaim October 15 of each year as White Cane Safety Day.

Now, therefore, I, Lyndon B. Johnson, President of the United States of America do hereby proclaim October 15, 1964 as White Cane Safety Day.

With those stirring words President Johnson issued the first White Cane Proclamation which was the culmination of a long and serious effort on the part of the National Federation of the Blind to gain recognition for the growing independence and self-sufficiency of blind people in America, and also to gain recognition of the white cane as the symbol of that independence and that self-reliance.

The first of the state laws regarding the right of blind people to travel independently with the white cane was passed in 1930. In 1966, Dr. Jacobus tenBroek, the founder of the National Federation of the Blind, drafted the model White Cane Law. This model act–which has become known as the Civil Rights Bill for the Blind, the Disabled, and the Otherwise Physically Handicapped-‘contains a provision designating October 15 as White Cane Safety Day. Today there is a variant of the White Cane Law on the statute books of every state in the nation.

From 1963 (and even before) when the National Federation of the Blind sought to have White Cane Safety Day proclaimed as a recognition of the rights of blind persons, to 1978 when a blind pedestrian met with misunderstanding regarding the true meaning of the white cane, is but a short time in the life of a movement. In 1963, a comparatively small number of blind people had achieved sufficient independence to travel alone on the busy highways of our nation. In 1978 that number has not simply increased but multiplied a hundredfold. The process began in the beginning of the organized blind movement and continues today. There was a time when it was unusual to see a blind person on the street, to find a blind person working in an office, or to see a blind person operating machinery in a factory. This is still all too uncommon. But it happens more often and the symbol of this independence is the white cane. The blind are able to go, to move, to be, and to compete with all others in society. The means by which this is done is that simple tool, the white cane. With the growing use of the white cane is an added element’-the wish and the will to be free’-the unquenchable spirit and the inextinguishable determination to be independent. With these our lives are changed, and the prospects for blind people become bright. That is what White Cane Safety Day is all about. That is what we do in the National Federation of the Blind

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

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.