Tag Archives: Blind

Good Morning Monday, and Good Morning Vomit!

Good morning Monday, and greetings to the last week of October.  We are still blessed with temperatures of highs in the low 80s and high 70s.   I’m still anticipating being able to wear my favorite fall sweater, an orange and white striped wool blend I’ve had around longer than my children.

After a late night of pigging out on pizza, and a few glasses of wine, I was pleasantly awakened by my daughter’s cries for me from the toilet this morning.  With my eyes still partially crusted shut, I made my way slowing toward uninviting aromas of diarrhea and vomit wafting down the hallway.  Thanks to her warning, my feet avoided the chunky slumps of the two slices of pepperoni pizza she’d inhaled which were now beautifully displayed all over the bath mat and bathroom floor.

Good morning vomit.  It’s been a while since you’ve graced us with your presence.  I remember the days where you consisted of breast milk and always seemed to know that we were about to head out the door.  You were always so precise in making sure to cover any nice outfits I wore.  As the kids grew, you grew into the delicious car vomit on road trips seeping into each and every nook and cranny of the kids’ car seats. My favorite visit was after Marley had consumed an entire bottle of milk, and a few sticks of string cheese.  I’m sure you remember this day just as clearly as we do.  We’d just been rear ended while in a caravan of cars on our way to visit the hubby’s grandfather’s grave on the one year anniversary of his death.  Oh and of course, who can forget our drive to San Diego where you decided you want to tag along two hours into our five hour drive.  You were a constant companion throughout Marley’s terrible twos, you never seemed to miss a beat, or miss a night terror.  I’ll have to admit, I wasn’t surprised when you showed up last summer on our 3,500 mile, 3 week, 4 state, camp-o-than.  It definitely made it more interesting traveling with a throw up bowl, rushing Marley out of the tent in the middle of the night, and taking her to get her blood drawn for all sorts of test upon our return home.   So you see vomit, you and I, we go way back.  There isn’t anything you can do to phase me.

As a blind mom, vomit and I have an even closer connection than moms who can see.  During the clean up process, I need to rely on my nonvisual techniques to make sure I’ve done the job, and done the job well.  Nonvisual techniques such as, feeling around to making sure I’ve covered every square inch of the floor, picking up all the chunks with my fingers, and sniffing around the house to make sure there are no splatters I’ve missed.  I love Clorox Bleech on mornings like these.  A little bleech in the toilet for a nice scrub, and a few sprays on the floor.  However, I guess vomit wanted me to do a little more than just scrub the toilet and wiped the bathroom floor with a towel.  After I thought my morning of cleaning was complete, vomit projectiled it’s way out of Marley all over the kitchen floor.  On the bright side, at least it only hit the floor and stayed away from the carpet.  Not a problem at all.  You see, I had fully intended on mopping yesterday, but never got around to it.  So, yes, mop the house it is!  This is great.  This takes care of my workout for the day because mopping + dancing = calories burned.

That ladies and gentlemen was my Monday morning.  Not a bad way to start a day, and not a bad way to start a week.  I’m ready to dance my way through each and every obstacle or challenge thrown”my way.

I hope you all have a wonderful day!

Sharing is Caring

 

Some people probably wonder why I often write such personal things here on my blog, and some people probably criticize me for being so open about my family and our struggles.   To quote my wonderful husband, in response to those people who ask why,?  “Why not?”

Why not share?  After all, sharing is caring.  I explain this simple concept to my children every day.

Why not share my joys, my journeys, my tears, my triumphs, my loves, and my passions?

Why not give a blind child a glimpse of a beautiful future that maybe one day she too can be a mom?  Why not give hope to a blind parent who has recently received the diagnosis that their child cannot see?  Why not give inspiration to blind students, blind seniors, blind veterans, and everyone else out there?  Why keep my positive outlook on blindness and on life hidden from the world?  Why not share?

Here are two photos I shared on my other blog,  the Seed Project.  I was inspired by my aunt who recently suffered from a stroke.  She was parylized on her left side.  After a few weeks of rehabilitation, she walked into her home, which her two sisters had remodeled for her.  She walked on her own, unassisted by anyone, but the help of a cane.  My aunt is a strong and sassy woman who loves life.  She loves a good glass of wine, she loves to dance, and she has an infectious laugh.  Knowing that in just a few weeks she is able to walk alone while stylishly rocking her cane, I know that she will again one day strut her stuff in sexy stiletto heels out onto a dance floor and shake it.

I am told my so many people that I am an inspiration, but today, I will tell you all that my aunt is my inspiration.

the sunrise at Valley of Fire on a recent family trip with the words, "What is inspiration to you?" across the top

I leave you with this, “Love actively and live proactively,” and don’t be afraid to share.

comic book style photoshopped version of a photo we took on a hike at Red Rock with the words, "Love actively, Live proactively."

 

An Update on Marley Jane and Mrs. Cane

Could you, would you, ever imagine a child going to school in a wheelchair and being told that she couldn’t use her wheelchair in the classroom because it wasn’t a school district issued wheelchair?

Could you, would you, ever imagine a child taking his inhaler to school and being told he wasn’t allowed to use it because he hadn’t yet been approved by a certified school employee?

Could you, would you, ever imagine  a blind child being denied access to her cane in her classroom?

That was exactly what happened in our case.   Just a few weeks ago, I wrote about how Marley was excited to bring her cane to school in the blog post, “Marley Jane and Mrs. Cane.”  She’d named her cane on a recent hike, and asked if she could bring Mrs. Cane to school.  What other answer could I give her but an enthusiastic, “Yes, of course you can!”   We made sure to go over all our cane rules with Marley before heading to the classroom.  We explained to her teacher that we want to encourage her to use the cane, and went over our rules about the cane with them as well.  After school that day, Marley excitedly told us all about how she told the other kids that it wasn’t a stick, it was her cane which she uses to help her find things by tapping in front of her.

That was on a Monday.

Just two days later, on Wednesday, my husband and I met with her teacher to go over Marley’s IEP and progress in the classroom.  I left the meeting knowing that even though things might be moving slowing with getting Braille integrated and implemented via her IEP, due to legal logistics and bureaucratic school district red tape in the form of assessments, parent signatures, more assessments, and more parent signatures, we would get Braille sooner than later as long as we kept pushing for it.  In the mean time, I will be personally putting Braille in Marley’s classroom while we wait.

That day, a few specialists from the CCSD Vision Services came to observe Marley in her class, toss the ball around with her to test her motor skills, and make the decision that Marley was not allowed to use her cane at school.   Upon receiving this news from her preschool teacher when picking Marley up at the end of the day, i thanked her for the message, and told her I’d take care of the issue.

How did I feel about that?

Frustrated, furious, and fuming would be putting nicely how I felt that evening.

What did I do?

First, I posted the situation on Facebook for support and advice from my friends, especially those who were professionals in the field of Teaching Blind Children, Orientation and Mobility, and advocacy.   I was right to be upset.  This was completely against ADA law, and against the National White Cane Law.  This was exactly like the airlines telling us we can’t have our canes.  Denying a blind person access to tools of independence is denying them the right to participate in society, and in life.

Second, after calming down a few degrees, I called Marley’s TVI (teacher of the visually impaired) the next morning to find out what had actually been said and why.  She explained she had not been there when the other school district employee had made the decision about Marley’s cane, would find out for me the details of the situation, and would give her supervisor a call.  I’ve never actually met Marley’s TVI in person.  Marley’s case had been transferred to her on the first week of school.  I am please to say that I get great vibes from her positivity and willingness to work with me for Marley’s best interest in mind.

That afternoon I received a call back from the supervisor of vision services per my request.  She explained the school district employee was concerned that Marley had not had proper training with the cane by a certified CCSD Orientation and Mobility (O&M) instructor.  She was afraid of Marley getting hurt or hurting others with her cane.  She wanted to wait until and O&M specialist could evaluate Marley with her cane.  I explained that Marley has indeed had great training on the cane, that she has also observed me with my cane her entire life, she has always wanted a cane of her own since before we were even aware of her eye condition, she understands and aknowledges that her cane helps her from tripping and running into obstacles, and most importantly that Marley is excited about using her cane.  Why would any adult want to take that from a blind child?

Shortly after our phone call, I received this email which had been sent to all members of Marley’s educational team.

“I understand Marley Rupp is bringing a cane from home to school. One of our teachers expressed a concern about her bringing her cane to school because it wasn’t issued by CCSD. From my discussions with Ms. Huff, my understanding is Marley is using it in a safe manner. Marley’s mom expressed she would like Marley to have access to her cane during the school day. Also, she informed me Marley has had private instruction on how to use her cane. My recommendation is for Marley to have access to her cane during the school day as long as she is demonstrating safe use of it . Also, I am asking one of our orientation and mobility specialist to visit Wright ES on Monday and observe Marley’s use of her cane.  I do recommend completing an orientation and mobility referral and a CCF 555, so proper assessment can be administered.”

Though it might look like we’ve won this battle,  my heart breaks thinking of the damage which has already been done.  Immediately following, Marley expressed she no longer wanted to take her cane to school.  She was afraid she would get in trouble for having it, and she was afraid of someone taking it away from her.  She has also started having night terrors again, and talking in her sleep about her cane.  I find myself constantly telling her to keep the tip on the ground and in front of her.  Worst of all, I was forced to take it away from her before school because of her behavior and misuse of it.

What do we do now, and how to we heel his wound?

We bring the excitement back!  We get her wanting to use her cane again.  Even better,  we help her feel proud of her cane.

Marley, me, and our canes at Spring Mountain Ranch State Park on her birthday adventure hike

Marley is in the middle of track break until the first week of November.  During this time, we will have our cane with us everywhere we go.  We take every opportunity to educate anyone who might have questions about it.  We even spent last Saturday celebrating both Marley and her little brother’s birthdays with a picnic adventure hike where Marley got to show off her awesome purple cane to her friends.  All of her friends now want a purple cane just like Marley.   We will even be decorating our canes and using them as part of our Halloween costumes as our fairy wands.

Marley and Jackson's adventure birthdayMarley and her cane with her little brother and friends on their birthday adventure hike

Together, especially my little Marley and her Mrs. Cane will change what it means to be blind by redefining rules, mystifying misconceptions, and conquering our dreams one tap at a time.

Marley and Mrs. Cane, midstep, midtap

 

 

Why was that mom crying?

This afternoon, we decided to kill the 2.5 hours that my daughter was in school by hanging out at a nearby park, instead of turning around and driving the 20 minutes back to our house for us to turn around again and drive the 20 minutes back to pick her up.

me at the top of a giant jungle gym made out of ropes

It was like every other park day.  There was nothing special or different, except since this was a new park, a much bigger park that I’d only been to a few times before, I kept my cane with me the entire time.   We climbed, ran, explored, and made friends with other mommies and kids.

Jack at the top of a hill with a multistory treehouse in the background

As we walked to our car when it was time to leave, we passed a mom with her little boy who were also leaving the park.  The mom was crying as she said, “Sorry I’m so emotional, but she’s so beautiful.”  It wasn’t until we’d passed her up a few parking spaces that I realized she wasn’t talking on the phone.  She had been talking to my husband about me.

Neither one of us could figure out why she was crying.  He’d caught her watching us earlier while we played.  He said it looked like she’d already been crying.  Maybe she was having a bad day?  Maybe she was overcome with empathy while watching a blind mom play with er son?  Maybe she has someone in her life who’s recently gone blind?  I don’t know, and I can’t stop wondering.  I also can’t help feeling like she somewhat felt sorry for me.  Perhaps that’s why her comment about me was directed to my husband instead of directed to me?

Do’s and Don’ts to Remember When Meeting a Blind Person.

October isn’t just for wearing pink and Brest Cancer Awareness. It’s also Meet the Blind Month, so we’re accessorizing with canes, a positive attitude about blindness, and getting out there doing everyday things like everybody else. Here’s Marley with her long purple cane, and me with my long white cane as we leave Town Square after a fun story time and magic show before school today.

Marley with her purple cane and me with my long white cane

Here are just a few friendly reminders of do’s and don’ts when meeting a blind person.

Do; say hello instead of standing around waiting for us to expect to know you’re there.

Don’t; point when we are asking for directions, we are asking because we actually need directions.

Do; ask if we might need assistance.

Don’t; grab us by the arm and drag us to where you think we might be going or across the intersection.

Do; ask us about our blindness if you are curious.  We are more than happy to talk.

Don’t; point and stare, jump over our canes, or pull your children across the street.  Blindness isn’t a contagious disease.

Do; tell us which bills are which when giving us change.

Don’t; say, “Here are your bills, and here are your coins.”  I think we can figure that one out for ourselves.

Do; engage us in conversation.  Some of us actually might have some pretty interesting, intelligent, or hilarious anecdotes to share.

Don’t; yel or speak slowly to us.  We are blind, not deaf.

 

To my blind friends reading this who have your own do’s and don’ts to share, please feel free to comment below.  I’d love to hear from you.

 

Think Love, Be Love

I saw this photo on Facebook this morning and just had to share it.  This week threw me a few curveballs that could have left me angry or discouraged. Instead of letting those initial emotions take charge of my reaction to the situations, I interpreted the situations as a chance to turn my passionate personality into a powerful one with action instead of reaction. I choose to live life with love in my heart, create and emanate positivity, and shun away all things related to anger and hate.

Dr. Wayne W. Dyer also shared this photo saying,

“Think of the people you know who give love in response to negative energy that’s directed their way. There aren’t many people who respond lovingly in that situation. The ones who do are able to because they have love to give away. They know that it’s impossible to give away what they don’t have, and they’ve gone that extra mile to acquire what it is that they want to both attract and give away. If love and joy are what you want to give and receive, then begin by taking stock. What have you got to give away? What are you giving out to the universe, and thus, what are you attracting? Remember that you can’t give away what you don’t have, but you can change your life by changing what’s going on inside.

Low energy attracts low energy. Low energy thoughts, such as anger, hate, shame, guilt, and fear, weaken you. And they attract more of the same. By changing your inner thoughts to the higher frequencies of love, harmony, kindness, peace, and joy, you’ll attract more of the same, and you’ll have those higher energies to give away.

To begin to change what’s inside you, become more loving toward yourself. In your thoughts, cultivate an inner voice and attitude that’s 100 percent on your team. Imagine an inner self that only supports and loves you. You might schedule a certain time of day when that’s the only thought that you allow yourself to pay attention to. Gradually this loving attitude will extend to other people. You’ll begin to receive this energy back and ultimately be able to send thoughts of love and joy to everyone and everything in your world.

Make a pact to remind yourself often of this secret of not being able to give away anything that you don’t have. Then work on your personal program of self-love, self-respect, and self-empowerment, and create a huge inventory of what you wish to give away. If what you give is self-respect and self-love, the universe will return the love and respect you’ve been radiating. It’s really so simple. As the Beatles said: “The love you take is equal to the love you make.”

Marley Jane & Mrs. Cane

Ever since she was little, Marley has always wanted her own cane.  So, of course, when we found out that she’s got mommy’s eyes, we didn’t hesitate to get her one.  What was the first thing we did when her cane arrived in the mail?  We made it purple, Marley’s favorite color.  For the first few months this purple cane remained nameless, until just last Saturday when Marley decided that her cane’s name was Mrs. Cane.

Marley and Mrs. Cane led the way as we spent an afternoon hiking at Spring Mountain Ranch State Park just outside Las Vegas.

 

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It’s apparently obvious that her steps are much more confident when she’s got Mrs. Cane with her.  After many spills, scraped knees, and stubbed toes, she’s starting to realize that she doesn’t have as much of those when Mrs. Cane is there too.

Last week during a thunderstorm, Marly ran into the house to grab Mrs. Cane saying, “I want to see if my cane sounds different in the rain!”

Mrs. Cane doesn’t always go everywhere Marley does.  It’s still a work in process getting her to want to take it along.  We work on the basic cane rules, and practice proper cane etiquette when she does have it with her.

Rules like:

1.  A cane is not a toy, it’s a tool.

2.  Nobody is to hold or use the cane accept Marley.

3.  The cane’s tip always stays on the ground unless when tapping it.

4.  The cane needs to be in front not behind so it can do it’s job right.

5.  If you’re not using the cane, it needs to be lying flat on the floor or standing straight upright so that it won’t trip anyone.

Today was a big day for Marley and Mrs. Cane.  Marley asked if she could bring her cane to school with her.  Of course I said yes.  I have been hesitant to push, wanting her to do it once she felt ready.  Today was that day.

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How was Mrs. Cane’s first day of school? ”

Great!  The other kids called it a stick, but I told them it’s a cane and I tap it like this.” as shetapped rhythmically

Her teacher also said she did great.  There were a few times between station rotations where Marley wasn’t sure where to put her cane and a few kids tripped over it.  We’re all excited to learn new tricks, tools, and tips together and work as a cohesive team with Marley’s best interest in mind.

 

 

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?

 

 

“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.

 

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.