“Unstoppable”

I’m excited to finally have these, “Unstoppable,” Braille T-shirts available so that everyone can show the world how, “Unstoppable” they are.

Why did I choose the word, “Unstoppable?”

Two reasons.

Reason 1.  My Aunt Say.  For those of you who have followed my blog for a few months now, you may remember me writing about her.  Last October, at the age of 48, she suffered from a stroke.  For the first few days following the stroke, she was paralyzed on her left side.  Two months later, she walked into her newly remodeled house (a welcome home surprise from her sisters) with the assistance of a cane.  Today, she is walking, cooking, cleaning, and …driving!   She is, “UNSTOPPABLE.”

Reason 2.  My Mini-Me, my Marley.  She is the ultimate mirror of her mommy.  At the exact same age, she displayed the exact same symptoms, and we have the exact same diagnosis of Optic Nerve Atrophy.  Just like her mommy, she doesn’t let anything stand in her way.  She is a determined, courageous, creative, passionate, and UNSTOPPABLE little girl.

Are you Unstoppable?  Show it off by wearing one of these, “Unstoppable,” Braille T’s.

 

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A Happy 5th Birthday to Marley with a Celebration of Braille

Miss Marley with ehr new Hello Kitty, both of them in glasses

Today was a very special day in our house.  Marley finally turned 5.  We’ve been talking about this for months.  We celebrated with a combined birthday party with Jackson’s 3rd birthday last month on a birthday picnic adventure.

All week longMarley’s been asking me, “Is it November 6th yet?”  Before I even got out of bed this morning, there she was next to my face,  “Mommy it’s my birthday today!”

birthday candles in birthday pancakes

How did we make this day extra special one for little Miss Marley?  It started with a birthday breakfast with birthday presents, and birthday candles in her birthday pancake.  Next, we brought cupcakes to share with her class, where the birthday song was sung to her again.

birthday cupcake at schoolLastly, we ended the day with reading three of her new Braille books before bed tonight.

About a month ago, I asked my friends and family to join us in helping to grow Marley’s personal library by sending her books in Braille.  Marley loves books, and I want to continue fostering that love by giving her as many books as possible.  I personally Braille most of our books, but the process is tedious and time consuming.

For those of you who participated in Marley’s Braille birthday, I want to send a special thank you to each and every one of you.  Expect a Braille holiday card made by our very own Miss Marley in the mail in the near future.  And for any others who want to contribute to Marley’s love of literacy and Braille, feel free to contact me for where to send a book.

Books have been ordered and are coming from all over the country.  This is one lucky and loved little girl.

Titles on the way to Marley’s Braille book collection so far;

“101 Dalmations Meet the Puppies”

“Cloudy with a Chance of Meatballs”

“The Bravest Dog Ever: The True Story of Balto”

“Riddles and More Riddles!”

“Fourth of July”

“Plattypus Probably”

“Snake Charmer”

“Crickets, Jokes, Riddles and Other Stuff”

“Elmo says Achoo”

“Thomas the freight train”

“1 Fish, 2 Fish, Red Fish, Blue Fish.”

“A Charlie Brown’s Christmas” with sound and music

“Ahoy There, Little Polar Bear”

“Clifford’s puppy days Pumpkin Patch Puppy”

“Dora the Explorer, I love my Mami”

“The Great Turkey Race.”

“Disney’s Beauty and the Beast: Together Forever”

“A Color of His Own”

“A Pocket for Corduroy”

“Alexander and the Terrible,Horrible, No Good, Very Bad Day”

“Amelia Bedelia: Bookworm”

“Amelia Bedelia: Rocket Scientist”

“10 Fat Turkeys”

“Angelina and the Butterfly”

“The Cat in the Hat”

“Green Eggs and Ham”

And a $40 gift certificate to Seedlings from Marley’s Great Grandma and Great Aunt Faith.

Once again, Aaron and I thank every single one of you from the bottom of our hearts for participating in such a memorable birthday.

 

 

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

 

 

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.