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Calling all Parents of Blind/visually Impaired Children in Nevada

Are you a parent of a blind/visually impaired child living in Nevada?  Do you know a parent of a blind/visually impaired child in Nevada?  Are you a teacher of a blind child, or a medical professional who works with blind children?  If  so, than I am looking for you.

Allow me to introduce myself.  My name is Terri Rupp.  My almost 5 year old daughter and I both have Optic Nerve Atrophy.  I wrote about the discovery of our daughter’s diagnosis earlier this year in my blog, “Marley and Me Musical Chairs.”  I feel fortunate to have my own experiences of growing up as a blind child, the opportunity to attend the Louisiana Center for the Blind where I learned Braille and other blindness skills an where I was introduced to the positive blindness philosophy of the National Federation of the Blind.  The foundation has already been laid for my daughter through my own blindness for her to grow up knowing that blindness isn’t anything to be ashamed of.  It will NOT hold her back from a bright future, rather it will  give her strength to overcome any and all obstacles if given the proper training and opportunity.

My husband and I want to share our positive outlook on blindness with other parents.  In all honesty, we both went through our own grieving process upon the diagnosis.  However the self pity, anger, guilt, and tears quickly tried up, and we both realized that this is just another mountain for us to conquer as a family.  During our frequent visits to the pediatric ophthalmologist, we have observed countless distraught, lost, and grieving parents of whom we just want to shout at, “YOUR CHILD IS FINE!  YOUR CHILD IS NORMAL!  YOUR CHILD HAS A BEAUTIFUL FUTURE!”

My dream is to get this message to every single parent in Nevada.  You are NOT going through this alone.  There are so many us out there just like you.  We are dealing with understaffed and underfunded school systems.  We live in a state with very limited resources for equal opportunities for the blind.  We CAN change this!  With the resources and support of the National Organization of Parents of Blind Children (NOPBC) and the National Federation of the Blind (NFB), we can change what it means to be blind, and give your children the future they deserve.

Please join us in organizing the Nevada Organization of Parents of Blind Children.  You can reach me at terri.rupp@gmail.com or join our Facebook group https://www.facebook.com/groups/653738258066532/.

Sincerely Yours,

Terri Rupp

Oh, and PS, did you know that October is National Meet the Blind month?

 

 

Making This My Mantra

I am happy, healthy, and whole.

No room for hate, darkness, or cold.

I have love.

I have peace.

I am calm.

I live passionately.

I laugh loudly.

I know where I belong.

photo taken in the city's backyard, Red Rock Canyon on the Children's Interpretive Trail

photo taken in the city’s backyard, Red Rock Canyon on the Children’s Interpretive Trail

Pulling a Terri

If you grew up watching the sitcom Friends, then you know what I am referring to when I say, “Pulling a Monica,” or in my case, “Pulling a Terri.”

These are things that only, “Terri,” would do.  These things may or may not have something to do with blindness.  These things are a great reminder of good friends and good laughter to share memories with.  If you take life so seriously that you can’t laugh at the goofiness in your daily lives, then you need to take a minute to step back and breathe, stretch, and smile.

Feel free to add any of your own anecdotes my friends 🙂

The time at lunch where I dipped my garlic bread into your cappuccino.

That time where I reached to feel that pretty dress in the store and it WASN’T  on a mannequin, but another shopper.

That time I stuck my fingers into your cheese dip looking for the french fries.

That time I waited for the automatic sink to turn on when it wasn’t an automatic sink.

That time I wasn’t using my cane, yes those times, that I missed the curb.

That time I called you by another name because you had the same hair or were wearing the same colored shirt.

That time I went to drain the juice from the stewed tomatoes and opened the tomato sauce instead.

That time I couldn’t find my ____ and it was right in front of me.

That time I accidentally texted you, “Nigger,” instead of, “Neighbor,” because my phone misinterpreted my dictation.

The time I showed up to work wearing two different earrings.

The time I poured orange juice into my coffee instead of milk.

The time I wore two different colored flip flops, but I totally rocked it since my dress was striped with both colors.

Those times I didn’t take the stickers off the bell peppers and tomatoes.

The time I walked into the sliding glass door.

Those times I’m shouting for you, and you’re just a few feet away.

The time I opened the can of soup with a can opener only to realize it was one of those pull tops.

 

Like I said, these may or may not be due to a lack of eyesight.  Most of these examples could have been avoided it I were only a little more careful and mindful, instead of rushing through my tasks.

 

I hope you all have a wonderful weekend.  Remember to live mindfully, laugh lovingly, and always greet each day with a smile.

 

 

 

 

 

 

“WE ARE ALL HUMAN BEINGS”

As we continue on through our Marley and Me saga, I make it a point to make blindness and the word blind something Marley will relate to with proud and possitive feelings, not ugly or negative ones.

So often in the world blindness is accompanied with sadness, pity, shame, grief.  It is my goal to abolish any negative ties to blindness in my daughter’s world.

If the world could only view things through the eyes of an innocent child, it would be a much more beautiful place.

During one of our discussions about the word blind, I had explained to Marley how people who need to read Braille and use canes are called blind.  Marley’s response, “And we’re all human beings!”

One of my favorite photos from this summer. Even with reaching around with both My cane and Marley's cane, we still barely manage to make it halfway around that giant redwood tree.

One of my favorite photos from this summer. Even with reaching around with both My cane and Marley’s cane, we still barely manage to make it halfway around that giant redwood tree.

 

New Baby in the Rupp House

An earlier blogpost called, “Surviving vs. Living,” ended with me challenging myself and challenging others not to just do what you can, but to do what you are afraid that you can’t.  The person who is the best at challenging me is my husband.  This year we celebrate seven years of marriage and ten years of happiness.  To him, just being good enough isn’t enough.  He is continuously striving to learn, evolve, grow, and perfect all aspects of himself, everyone around him, our home, our lives, and our future.

Last April, for my 31st birthday he helped me challenge myself and we literally climbed a mountain together.  I started the year out with the goal that in order to continue the growth of our marriage, I would start to take more of an interest of things that he enjoys.  This was around the same time I discovered the book, “The Happy Wives Club,” by Fawn Weaver.  Her words describing a happy marriage brought me to tears in almost every chapter.  Each description of a happy marriage tugged at my heart as they reflected how I felt about my own marriage.  We’ve always had great communication and I don’t want to sound like I’m bragging, but we are probably the most healthy couple either one of us knows.  If you want a thriving garden, you must love it by more than just giving it the basic water and sunshine.  You must give love by spending time in the garden tilling and fertilizing the soil, singing and talking to the plants, and picking off the caterpillars leaf by leaf.  I chose to compare marriage to a garden because gardening is one of his passions I I’ve just recently begun to love myself.

Backpacks on and ready to embark on our adventure

After spraining my ankle in January I was afraid that I wouldn’t be able to give myself my birthday adventure.  But with his help, I did my first backpacking trip and completed an eleven mile roundtrip hike where we backpacked to an almost century old cabin on the Hidden Forest Trail just outside of North Las Vegas.

Last week we started another life changing adventure together.  This adventure began with an idea to raise $2,400 in 24 days to help fund his enrollment into a self enrichment leadership program.  However, as we wrote out the description for the fundraiser, both of us realized at the exact same moment that it shouldn’t and wouldn’t stop there.  This is the beginning of a beautiful chapter in the Rupp family, an adventure full of endless possibilities.  an opportunity for us to change our lives and other lives by planting seeds.  “Planting seeds,” you ask?  Yes.  We are planting seeds of inspiration, seeds of love, seeds of adventure, seeds of passion, seeds of possibility, seeds of friendship, seeds of who knows what could be out there.  Why?  Because everything starts with a seed.  This is the beginning of The Seed Project.

I would like to ask each and every one of you reading this to please take a minute to watch our video.  For more information on The Seed Project or to help us grow by planting your virtual seeds, please visit www.theseedproject.net.

 

 

Blind and Pregnant? A production company is looking for you.

I’ve been asked to pass this on…

“Cineflix Productions are looking for Blind or Visually Impaired Moms-to-be for a new series looking at pregnancies. The show is for the TLC Network (Part of the Discovery Channel) and we are looking for women who are due to have their babies between October 2014 – Jan 2015. 

This brand new factual series will take a look at pregnancies around the world- meeting mums-to-be who are juggling the excitement and anxiety that pregnancy is expected to bring, but who might have an extra ‘something’ to take into account. We’re looking for women who are experiencing their pregnancy with a pre-existing condition of their own (such as visual impairment and blindness) or have a condition brought on by the pregnancy. 

 

Across this observational documentary series, we’ll follow these women through their pregnancies, as they and their families prepare for the birth of their baby. From sharing the news with loved ones, to medical appointments and baby showers – right up to the big day itself. We’re hoping to film with the pregnant mum’s medical practitioners to help the audience understand how the expectant mother’s condition affects her experience of pregnancy medically, while the mum-to-be and their loved ones will take us through the day to day realities of their pregnancy. If this is something you are interested in, please email Naomi at pregnancy@cineflix.com“

 

Marley and Me, and a Frustrated Mommy

Yes, this mommy is frustrated in this episode of our Marley and Me series.  Frustrated is putting it nicely.  After arriving back from our three week vacation, we had a huge stack of mail waiting for us at the post office.  One of these pieces of mail was the letter from the school district letting us know where Marley would be going in a few weeks.  To our surprise, she’d been assigned a school in a completely different part of town.  If roads around here actually went through instead of dying and starting up again, it would be a 10 minute drive or bus ride (that’s if we let her ride the bus, you REALLY don’t want me to get started on that issue.)  Instead, the way the roads are designed down here in the south part of town, we have to go North ten minutes, west ten minutes, and back down south another ten minutes to get to the school she’s been assigned to.  Why is she to go to a school so far away when there are two very good schools that are offering preschool just a mile from home?  After a week of phone calls, messages, and the run around, I’ve come to this conclusion.  Nobody knows anything about anything.  I was under the impression during Marley’s IEP that she would be going to a community based program with, the word I hate to use being “regular” kids.  Instead from what I’ve gathered from other moms, and confused receptionists, each school’s preschool is for a different type of disability.  The school our address is zoned for is offering a preschool program for autistic kids.  A mommy friend is forced to send her daughter on the other side of town because she need speech therapy.  Umm, correct me if I’m wrong but, doesn’t that defeat the point of that they are called, “Community Based?”  Apparently, if I want Marley to get the IEP, she has to go to this school they’ve assigned her too.  I’m speculating when I’m saying this, but does this mean she’s going to be in school with other blind and low vision kids?  This might be the county’s cheaper and easier solution, but this isn’t what we want, nor is this how her education plan was presented to us.  We want our daughter in a mainstream, a “normal” school with “regular” kids.  My husband wants to say f**k the IEP.  I want to say f**k CCSD.  I will probably be spending the next few weeks getting more and more frustrated with each phone call that I have to make.  I will send Marley to school and see how it turns out to really be, and we’ll see where it goes from there.  Wish me luck that I don’t blow up on anyone.

Saying Bye to the Burbs and Hitting the Road, the Roadtripping Rupps are at it Again!

While 3,000 blind people are making their way to Orlando for a week full of excitement, innovation, and inspiration for the National Federation of the Blind Annual Convention, this mama is preparing for a completely different sort of life changing summer vacation.  Today my little family and I take off on what I like to call our Summer Family Adventure, AKA 2014 Camp-a-thon.  We are hitting the road for the next three weeks in hour Honda Pilot for California, Oregon, and Washington.  Stay tuned for the next post which will be full of photos and stories of our shenanigans.

Here are just a few of the stops we’ll be hitting.

Mt lassen
Mt. Shasta
Crater Lake
Mt Hood
Mt St. Helens
Coos bay
California Redwoods
Big Sur
Morro Bay

 

Whether you’ve got crazy plans like ours, or just some simple backyard fun, I wish you all a safe and happy Fourth of July.

 

The Potty Party

It occured to me that I have never posted a blog on potty training as a blind parent.  Now that I’ve gone through it twice, I feel adequate enough to be able to pass on a few things I’ve learned  during this exciting developemental milestone.

1.  They are ready when they are ready.

With Kid #1 I was determined to have her out of diapers before Kid #2 was born, which was just before she was to turn 2.  It almost took an entire year of trying again and again before she was completely potty trained.  Moms, my best piece of advice is don’t give in to the peer pressures of parenting.  Just because the other 2 year olds your child may be playing with are already completely speaking full sentences, riding tricycles, and are both day and night time potty trained doesn’t mean your kid is any bit behind in development.  I took a much more relaxed approach on potty training with Kid #2 letting me show me the signs that was ready to use the potty, and believe me, it was much for stress free and fun.

2.  Go with the Potty Training Bootcamp Method.

Learn all about How to Potty Train Your Kid Boot Camp Style by Alpha Mom.

I used this method with both of my children.  With Kid #1 it was more like a week before she was completely potty trained.  Since it was August in Las Vegas, I kept her completely naked accept for underwear.  She quickly learned she did not like being wet and would cry for fresh ones after an accident.  She seemed to pick up on going npoop much quicker than pee.  This is probably because going poop required a little more concentration.  At just past 2 and a half years old Kid #2 woke up one morning and told me he wanted to use to toilet.  This kid doesn’t even call it the potty.  He says toilet.  In less than three days he was completely potty trained, with pee that is.  He refuses to sit and poop on the toilet.  It’s been a month now and he still refuses to use the toilet.  After tossing out almost all of his underpants from being fed up with washing out poop, I decided we were going to have to resort to Pull Ups.  This way I’m not stuck with a mess, and he can still easily use the toilet on his own.

I can’t say one kid was easier than the other.  It may have been easier with Kid #1 since my son was still taking two long naps a day and barely yet mobile.  We spent much of our time playing outside under the patio, with the water table, and when we were inside we stayed in the main living areas of the house to limit where accidents might happen.  There were a few times when she didn’t tell me about an accident and I found myself slipping in pee on the floor.  However with Kid #2, his older sister loved being on Potty Patrol and helped get him excited about being a big kid like her.  It wasn’t hot yet, so my blind mommy trick this time around to limit clean up was to keep him in thick sweatpants.  I know, you’re probably thinking, “Sweatpants? ” Yes, sweatpants. His underpants and the thick sweat pants material soaked up any of the pee he might have from accidents, meaning no messy clean up on the rugs or floor.  Kid #2 is even worst than his sister when it comes to not wanting to be wet.  He’d cry immediately for dry clothes after an accident.  We just need to get past this pooping problem with this one.

3.  Make it a Potty Party.

If you’re feeling anxious or stress out about the process, than so will your child.  Decide that week that you’ll be doing laundry everyday and going through a ton of towels.  Get a big bag of treats whether you prefer jelly beans, M&M’s, stickers, etc.  We used a poster board where we drew stars, happy faces, and sad faces,  Then we ran to the kitchen where everyone who was home got a mini M&M.  Lastly, we all danced to the front of the house where my Freedom Bell was kept and took turns ringing it shouting, “Woohoo Jacksn went peepee in the potty!”  Make it fun, be silly, sing, dance, and enjoy!

I Choose Health Over Vanity

This is not a blindess related blog.  Instead this is a rant on my thoughts on health verses vanity.  It seems like everytime I go home to visit family someone has some sort of comment about my weight.  Before, it was that I was getting too thick and I needed to loose weight, now it’s I’m too thin and I need to eat more.  Well, here is my take on all of this.

I don’t care on how thick or thin I may be.  I choose to eat the way I eat for my health. I’ll be perfectly happy if I weight 110 or 150.  What matters is how I feel.  I don’t keep a scale in my house because I don’t care about the numbers.  I care about how my stomach feels if I’ve eaten something I should or shouldn’t have.  I care if I’m going to be bloated and in pain all night after eating too much processed food.  I care if I’ve gone number 2 that day or not.  I am a true believer of you are what you eat.

I’m not a vegan.  I’m not a vegetarian.  I don’t follow a paleolithic diet.  I’m not gluten free.  I don’t just eat organic or hormone free foods.

I drink a ton of water.  I follow an 80/20 rule when it comes to what I do eat.  I limit my sugar, dairy, processed food, red meat, don’t eat fast food with the exception of In & Out, don’t drink soda.  I love chocolate, wine, and the occasional pizza or turkey burger and sweet potato fries.  I love the fact that I am going to go out back to my garden today and pick everything I will need for my salad for lunch.

I appreciate when others take into consideration the choices we make.  I am thankful when someone askes me if its ok if my children have this or that instead of just tossing a McDonald’s bag full of chicken nuggets and french fries in front of them.  The are starting to understand the difference between real food and junk food, but they are still just children.  We limit their exposure to junk food to limit their temptation.  We spend a lot of time in the car driving from Las Vegas to Northern California a few times a year, and we still manage to make the drive without filling ourselves with convenient gas station food.  We always keep a cooler of fruits and jars of nuts to snack on so that chips and cheetos won’t even be an option.

If I were loosing weight and trying to get a beach body to look like all of the other girls found at the pool parties in Las Vegas than I could simply pay a few $$$$ and have a doctor do it all for me.  This is not for vanity.  This is for my family’s health and for our future.

Thank you for listening to my rant.