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

 

 

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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.

 

 

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.

First Day of School, Not Here in Our House Though.

Today was the first day of school for most kids in Las Vegas.  Both parents and kids were full of excitement and maybe just a little bit of anxiety this morning.  Alarm clocks buzzing, lunch bags and backpacks getting double checked so that nothing is forgotten, new shoes laced, tied, and double tied for plenty of playground fun, and we can’t forget about those first day photos getting posted to Instagram, Facebook , Twitter, and texted to grandparents.

But none of that happened here in our house.  The kids and I slept in until 8:30am.  My husband and I enjoyed a big breakfast and coffee out on the patio while the kids ran around in their bathing suits splashing in the rain and the kiddy pool water slide.  Now Jackson is napping, Marley is watching Mickey Mouse Clubhouse, hubby working in the garage, and I’m cranking out this blog.

Why isn’t Marley starting school today?  Well…here’s what I told my next door neighbor when she asked me this morning.

Marley is still only three, and not turning four until November.  This means she won’t be starting Kindergarten until fall of 2015 because of the age cut off here in Nevada.  As a stay at home mom, I don’t think it is necessary to send her to two years of preschool.  We spend a few hours each day working on preschool activities, and also incorporate learning into everything we do; from trips to the grocery store, gardening in the backyard, or strolls through the park.  I run a neighborhood mommy meet up group so the kids get plenty of socialization.  My husband’s work schedule gives him quite a bit of time home, making it easy for us to go camping, hiking, to museums, visit local orchards and farms, and take countless road trips exposing the kids to hands on learning opportunities like our upcoming trip to the Astronomy Festival at Great Basin National Park.  We are even giving a little bit of thought about homeschooling our kids completely.

I go back and forth on homeschooling.  There are so many pros and cons  to consider.  As a blind parent I will definitely have a few more challenges with home schooling than a sighted parent.  I can’t read handwriting, so I will have a tough time teaching my kids how to write.  I am not very tech savvy, and a lot of the curriculum comes from online sources, including PDF format which aren’t screen reader friendly.  However, homeschooling would mean we would have more control over our children’s education.  Nevada has one of the worst public school systems in the nation.  We can continue to incorporate learning in our frequent family trips.  We won’t need to worry about things like bullying, unhealthy school lunches, transportation, etc.  Like I said, so many pros and cons.

So for the next two years, at least until I need to make a decision about Kindergarten, my kids will be getting their education here at home.  I’ll talk to more parents who have chosen to homeschool and do the research so that we can make the best decision for our family.  For the next two years we won’t need to worry about alarm clocks on Monday morning delegating the start of another week.  I am going to suck up every moment of our family quality time.  Whether those moments may be adorable, annoying, or aggravating, they’ll be gone before I no it.