C is for Choice

obstacle

I asked my husband to creat me an image from his website TheSeedProject.net for my, “C is for Choice,” blog, and this is the image he emailed me.  At first, I thought, “Wow I love the words, but a few leaves don’t look like much of an obstacle.”  I asked him why didn’t he choose something more, “Obstacle or Opportunity,”ish like a trail or a mountain.  That’s when I discovered that I was only seeing the leaves, and not where they were coming from.

This was a photo from our trip to the California Redwood Forest last summer.  A Giant Redwood had fallen on it’s side, cut at a straight horizontal angle, and it’s face had been completely charred during a fire.  From this fallen, chopped, and charred tree spring life in the form of these little fern leaves.

Merriam Webster defines, “Choice,” as

the act of choosing : the act of picking or deciding between two or more possibilities

the opportunity or power to choose between two or more possibilities : the opportunity or power to make a decision

a range of things that can be chosen

As a parent, I often feel like my choice is worth more now than ever.  Every single decision I choose not only effects me, it also effects my children.  Whether we realize it or not, those choices big or small might possibly be the defining moments that shape your child or stick with them into adulthood.

It has been almost exactly a year since Marley was diagnosed with Optic Nerve Atrophy.  I wrote all about it in my, “Marley and Me Musical Chairs,” post.  Once upon a time not to long ago, I felt angry, guilt, grief, and fear.  I was so incredibly afraid of the challenges my daughter would face in life.  I was afraid that, like her mommy, she would be bullied by the mean kids in school, afraid that she would be ashamed of who she was, afraid that she would fall through the cracks in the educational system, and worst of all I was afraid that she would blame me for her blindness.

What does being afraid get you?

Nothing.  Fear only brings more fear.

I chose to shift my fear into a fierce passion for a future full of endless opportunities.

Last November, I and a few other parents, organized the Nevada Organization of Parents of Blind Children. My vision for this organization is to reach every single parent of a blind or visually impaired child in Nevada.  As human beings we thrive when we connect with other human beings.  Blindness can be a scary thing.  Blindness can be a life changer.  However, blindness can also be empowering and powerful.

If we as parents choose to fear blindness, than our children will too fear blindness.  Instead of fearing blindness, I choose to embrace it.  When I hold my long white cane, I feel confident.  I feel as if nothing can stop me if I have my can with me.

Marley has even begun to acknowledge her feelings.  The other night while cuddling in bed after we’d read a few pages from her Braille copy of , “Amelia Bedelia,” she whispered that she felt nervous about using her cane, especially if I wasn’t there with her using mine.  This was after a long four day weekend where both my husband and I had been busy in classes and my mother in law was flown in to stay with the kids.  She didn’t want to look different or want to have people look at her.  I told her it was ok to feel nervous, but we needed to figure out a way to turn that nervous feeling  into a powerful feeling.  We talked about all of the fun times we’ve had while using her cane like on our hikes, our camping trips, and decorating it and taking it trick-or-treating on Halloween.  We also talked about the times she tripped and fell because she didn’t have her cane with her.  So instead of feeling nervous about anymore, she chooses to feel happy, safe, and powerful when she has it.

Two days later, a classmate shared the following video on Facebook and I knew it would be the perfect end cap to this blog.  It’s taken me almost a week to finally dedicate a few uninterrupted moments in posting, “C is for Choice.”

Until I write again, let’s all choose to make it a powerful week!

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Tipsy Tuesday – Creating Literacy Skills Kits to Target the Expanded Core Curriculum

I believe this is the perfect way to start off my Tuesday, and so I must share it with you.  No, it’s not the tipsy you’re probably thinking of.

Tuesdays on Blind Mom in the Burbs are now for Tricks and Tips for success in making life just a tad bit more easier for blind moms and dads, blind students, teachers of the blind, the newly blind, and even the sighted.

While checking the time on my phone first thing this morning before my alarm went off, I notice a message from a fellow blind mom.   This is too good to keep to myself, So… here you go!

If you are a parent of a blind child or a teacher of the visually impaired then you absolutely need to check this out.

Click here to learn about how you can creat literacy skills kits to target the expanded core curriculum

bag of goodies

I hope you all have a terrific Tuesday!

 

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 and Me Musical Chairs

Photo of Marley and me

I feel like I’m in a real life game of musical chairs.  First I was the blind child, then the blind student, then the blind parent, and now I’m sitting in the seat as the parent of a blind child.

This blog has been a draft in progress, and I’m finally ready to share it with you all.

About 2.5 years ago, we brought my daughter into see the pediatrician for a double ear infection.  This was when it was first brought to our attention that she had a nystagmus.  After a few trips to the eye doctor, we were given the diagnosis of Spasmus Nutans.  This is the combination of the Nystagmus, Amblyopia (lazy eye), and a head tilt in response to the other two symptoms.  We were told that this was common in eye development in toddlers and it should correct itself by school age.

Over the next 2 years it looked as if it was somewhat getting better, only showing when she was really tired or concentrating to see something at a distance.  But  as her fourth birthday came around, we noticed more and more signs that perhaps we were just looking for it to get better because the doctor said it would

I noticed that she was having difficulty seeing the letters in her books while we were working on reading and writing.  My husband noticed she was having difficulty tracking things at a distance.  Some of my close friends noticed that when she went to grab an object, it looked as if she wasn’t reaching directly for that object but more feeling for it.

I couldn’t believe I let two years go by since her last eye check up.  When I called to make an appointment in January, the first available appointment wasn’t until May.  This wasn’t acceptable, especially to a worried parent.  After asking around, I found another ophthalmologist who came very highly recommended in my network of moms.  I also decided to contact the school district to see if she would qualify to get into their preschool program, because if she would be needing any services I wanted to start the process sooner than later.

After a series of assessments with the school nurse, psychologist, vision test, and hearing test, we sat down to our first IEP (Independent Education Plan) this last Tuesday.  It was determined that my daughter qualifies to start preschool under the fact that she would be a blind/low vision student.  Keep in mind that we hadn’t yet seen the new eye doctor.  There was much discussion about what accommodations and services she would be given  As I’d expected, there was much disagreement on the topic of Braille.  The low vision specialist claimed she felt my daughter has too much vision to learn Braille, that it would slow her down and confuse her.  Knowing the IEP process, and knowing that I was able to ammend it if I felt need be, I simply told them that if they didn’t want to teach her Braille in preschool, that was fine with me.  I am already teaching her Braille, and by the time the school district is ready to approve Braille instruction, she’ll already be fully reading uncontracted Braille, and far ahead of her peers.

A few days later, on this last Friday we visited her new eye doctor.  It turns out that she doesn’t just have the three sypmtons that make up Spasmus Nutans.  She’s got Optic Atrophy just like her mama.  It’s very possible it was a dormant gene that appeared in me, then I passed to her.  It could be that since we weighted two years without treating the Amblyopia, it caused the atrophy in the eye.  It could be a fluke coincidence.  However, all that matters is, she’s got the same eye condition as me.  The doctor also told us that her vision loss is severe enough that Braille would be best for her. Forcing her to read print would only strain and stress her eyes thus possibly making things worse.

I’ll be honest.  This weekend consisted of a whole lot of tears, a whole lot of guilt, a whole lot of grief, a whole lot of anger, but also a whole lot of of inpouring of love and support.  It also consisted of a whole lot of pride.  On sunday morning, I heard my daughter chatting away while she was eating her pancakes.  My mommy ears perked up when I heard her say, “X is 1 3 4 6.”  I then asked her to show it to me, which she did on the little wooden Braille block that we play with.  She then told me that X was her favorite letter in Braille.  I was overwhelmed by the comforting feeling that no matter what, everything will be fine.  She is a happy, healthy, beautiful, bright, and strong little girl that will succeed in whatever her heart desires.

With my own personal experiences, with the resources and support through the National Organization of Parents of Blind Children and the National Federation of the Blind, with the love of family and friends who will treat her like every other little girl out there and not like a child that needs to be tended to or coddled, I plan to surround her with nothing but positivity and make sure that she grows up to be a confident young lady doing whatever she wants to in life.

So…to my dear sweet Marley, this song is for you, because you’re amazing just the way you are.

“The Childfree Life”

The Childfree Life

On a recent Time Magazine cover, there is a controversial photo of a happy couple laying on the beach. Above them it says, “The Childfree Life, when having it all means not having children.”

My husband and I had a lengthy discussion about this yesterday on the way to hang out on the Las Vegas Strip with some friends, who happen to be a child free couple.

At the hotel pool as we happily splashed with our kids, there were plenty of child free couples laying on the loungers reading or sipping cocktails. It made me wonder, who really is the happier couple?

While I’d rather not be woken up in the middle of the night by my daughter’s screams caused by her night terrors, and this morning while both kids emptied everything from my DoTerra lavender oil, band aids, Neosporin, and all the rest of the contents of my first aid bag onto themselves because they were playing doctor. I still wouldn’t trade this life for a million trillion dollars.

What are some of your thoughts on this photo?