Blind Mom in the Burbs in Good Housekeeping

Guess who’s been profiled in a national magazine? That’s right,! Pick up the October issue of Good Housekeeping and turn to page 15. The title of the article says, “Blindness Doesn’t Stop Me From Living the Life I Want to Live.” So much love to Peg Rosen for writing such a wonderful piece.

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IEP Revision Day

IEP revision day, and this popped up in my Facebook memories. We’ve been advocating since 2014, this post was written by Aaron Rupp in 2015, and I could not be more grateful for the team assembled around the conference room this morning. However, my heart goes out to all of those students out there who don’t have parents who are on top of advocating for them, the students who have been written off or who have slipped through the cracks. My heart goes out to the parents who are fighting the fight, battling IEP battle after IEP battle, especially at the beginning of every year where it feels like we are starting from scratch to get accommodations that are blind children are entitled to receive. My heart goes out to the good teachers who are completely stretched thin. Wouldn’t it be nice if we could just start the school year knowing that everything will work out, that our kids will get their materials in the format they need, on time, and not have to deal with inaccessible programs and standardized test, low expectations, bullying, and an education system that needs a serious overhaul.

(Aaron Rupp, September 4, 2015)

Sitting in this chair, my heart is pounding. Seriously pounding, to the point that I have to consciously focus on breathing to stay calm to be able to conduct myself and stay focused at this critical moment. But the pounding is almost all I hear and feel..,

At the table with me is Terri Rupp (my wife) and Marley’s (my daughter) educational “team”. And sitting across the table from me is the school district’s cane travel instructor, discounting me and my wife, every time we speak.

The discussion surrounds the selection of which cane Marley is to use, we want the longer, lighter white cane, while she feels that a much shorter, 3x heavier with a que ball end cane is the “best choice”. Every time we speak about what the white cane means, or mention the philosophy of advocacy and higher expectations/ standards we live by and expect for ourselves, including Marley, a look of sheer disgust smears across this teachers face, followed by a heavy roll of the eyes and pulling of her brows as high as she can, finishing off with a sarcastic smile to the others (Marley’s principle, kindergarten teacher, low vision teacher and special services coordinator) CLEARLY saying without using words, “who the fuck do you think you are to make decisions for your daughter, & I can’t believe we’re wasting our time listening to his shit folks”.

The words she IS using is, “what training and credentials do you have in orientation & mobility (O&M)” (to have a say in the course of your daughters independence development). She says, “I have a masters in O&M, and YEARS of experience”, she says, “Marley’s white cane with metal tip is a danger to others”.

I look at these divine and almighty credentials of hers as a hindrance, she has had 6 years of formal training on how a sighted person tells a blind person what’s best for them, and has been teaching sub prime methods that do not encourage confidence nor allows them to navigate through life at equal pace with their peers.

What does the short cane mean to me?

~First of all it is shorter, so instead of picking up on obstacles and landscape variations several feet in front of the user, they discover steps and walls when they are LITERALLY INCHES in front of their toes. It sets foundation for slower, less confident walking, and that is a fact.

~The standard cane is heavier (2-3 times heavier) than her long white cane, with a weighted stub at the end, that is meant to be push/drug, grinding against forward motion with every step, and catches on every crack, rock and twig the user encounters. This does not allow the user, or my daughter, to move freely or on par with their peers, and again, reinforces the foundation of lower expectations and standards. That is a fact.

~Most importantly, the difference SYMBOLICALLY from the short, red ended heavy cane vs the long white cane. The standard cane originates in the UK circa 1921, by James Biggs, who found himself newly blind and painted his walking stick to become more visible. (White cane, Wikipedia.org). The long cane was developed in 1958 by the Iowa chapter of the National Federation of the Blind, designed to “enable us to walk faster without diminishing either safety or grace”(The Nature of Independence by Dr. Kenneth Jernigan, NFB.org) One was created from a “discomfort from the amount of traffic around his home”, and designed for the purpose of “being more visible”. Of its entire development from England in the 20’s, to France in the 30’s and the lions club in America in the 50’s, the main theme from its inception, to its development and adoption into law, is the concept of “visibility”, alerting others of a blind person. In contrast, the long white cane was created from a dissatisfaction for “the short, heavy… type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless”, and designed for the purpose of “advancing on the road to freedom and independence”(Jernigan). And THOSE are facts…

~In short, one symbolizes “look out, I am a handicapped person, and I can’t get around that good”, while the other symbolizes “look out, I’m a handicapable person, and I’m coming through!”

This lady’s perspective and decisions regarding the training and foundation for Marley, and countless other children, are based on conventional education, and only values input that supports her lower expectation standards. Our perspective and decisions are compassed by a lifetime experience, Terri being blind since childhood, and me having been partnered with her for the past 11 years. Terri as a child went through a system that enforced the negative promotion model of blindness. She learned on a short cane, and Braille was not encouraged. When we got together, she was in college, staying up all night trying to keep up with the required reading with her face pressed down into the book on the table reading at 15-20 words a minute, and walking into light poles & fire hydrants! It wasn’t until she adopted a positive promotion model that she dared to have the audacity to live the life she wanted. She got the PROPER training, and now runs 5k’s, navigates airports solo, is an amazing mom and reads faster than George W. speaks!

Do you think a formal education experience ever landed this teacher in a room of several thousand successful blind people cheering at the top of their lungs in celebration of their independence, or meeting blind doctors, Harvard graduates, Everest climbers and elite triathletes? Probably not, which is why her expectations and view of the blind is unwittingly discriminating, and is exemplified by her insistence on sub prime, and archaic teaching methods.

Cane travel skills are like handwriting skills, am I to expect my 5 year old to be writing in cursive? Of course not, it is a development of fine motor skills that she is working through. I would be unreasonable to expect her to execute impeccable discipline and precision in her cane usage either. But forcing her to use a tool that will not serve her in the future, will slow her down in the present, and set a life trajectory of lowered expectations on a deficiency model, is like forcing her to learn only large bubble letters before she is allowed to learn Braille. No!!! We have high standards for our life, and we expect the same for Marley! I was expecting to be met with a different philosophy and lower expectations for a standard of independence, but

I wasn’t expecting to be met with condescension and disgust.

This is not the first time some stranger in their own ignorance has attacked Marley’s progression. Past actions from the school include refusing Braille, physically taking her cane away and holding her hand instead of letting her run with her classmates.

At what point does life experience have any validity in the face of a “formal education”? My words are worthless because I don’t have a degree in o&m?… What am I supposed to do, get a masters in every aspect of my life to be able to advocate for my daughter? If there is any term I can think of that depicts what my daughter is up against, it is institutionalized discrimination…

#speakingovermewontstopme

It’s time to take what you love, and run with it.

Yesterday, I finished up week 4, making it 1/4 of the way through completion of my marathon training. I’ve had my good run days, and my tough run days. Yesterday’s 10 mile run was a great run day.

I feel pumped, my head is clear to start a purposeful and productive week.

Here’s what week 5 looks like.

Monday, rest

Tuesday, 4 miles

Wednesday, 7 miles

Thursday, rest

Friday, 6 miles

Saturday, 4 miles

Sunday, 13 miles!

What are you waiting for? Time to get up, get out, get active. Time to work on that goal you’ve been thinking about. You don’t have to run a marathon, but you should stop dreaming, and start doing. It’s time to get those creative juices flowing and share your Beautiful self with the world. Your time is now ❤️. Take what you love, and run with it. 🏃🏽‍♂️🏃🏽‍♀️💕✨

#ForTheLoveOfRunning

More hours in the day please

Humpty Dumpty sat on the wall.

Humpty Dumpty had a great fall.

All the kings horses, and all the kings men

Couldn’t put Humpty together again

I’m feeling like Humpty Dumpty. I’m teetering on the edge of a wall. I’ve got so much to do, and I feel like I have so little time to do it in.

You would think that as a stay at home mom with two kids in school full-time that I would have all the time in the world, right?

Wrong!

Can I just have a few extra hours added to my day?

I don’t want to fall off of that wall and come crashing down.

I am not ready to give up any of my extras. However, somethings got to go. Instead of giving something up, I keep finding myself getting excited about more projects, more goals, and more to do’s.

I love goals, calendars, checklists. I love the feeling of completion. I love feeling productive.

What I need, is to find balance. Balancing my passions, and balancing my role as a present and engaged mom.

This means running when my kids are still asleep in the morning, or after they’ve gone to bed at night.

This means getting all my business done as the president of the national Federation of the blind of Nevada while the kids are in school.

This means putting myself out there on social media to promote my blog.

This means finding time in my day to start writing my book.

This means putting in the research for a project my mind is spinning around to empower blind children through the love of running.

This means keeping a clean and tidy house for a slightly OCD husband.

This means, this mom starts her day with a good cup of coffee in the morning and ends it with a Great glass of wine at night.

As I teeter along like Humpty Dumpty, I continue to run and write, as those are the two things that keep me balanced.

What keeps you balanced?

Questions to Fellow Stay at Home Moms

Dear fellow stay at home moms who are also blind, and also to those moms who can see too,

I have one question for you. Well it’s more like two.

What do you find you struggle with most? Your answer does not have to be blindness related or to parenting at all.

What are some things, tricks, tools, techniques you use to help you get over those hurtles?

I’d like to really spark a conversation here.

XOXO,

MamaRupp

Photo of me

Coffee companion

my parents retired and moved to Las Vegas exactly 2 years ago. They are happily enjoying retirement and spending a lot of time with all of their grandkids, all 5.5 of them Who are located in three different states. After being gone for a few weeks, they returned home last night. I headed over for a morning cup of coffee with my mom and was pleasantly surprised by this gift.

Photo description, a white coffee mug with the words, “Coffee makes me poop.” The best part about it is the tactile poop in the middle of the words.

I am grateful to have my mom right around the corner, and extra grateful for her sense of humor to go with my morning cup of coffee.

Just another mother runner Who happens to be blind

On the morning of May 6, my running guide/driver Kim picked me up at 6 AM. During the half hour drive, we talked about all sorts of great stuff, like how we need time for our bodies to wake up before a long run, and how it’s so important to make sure you poop. I hadn’t pooped yet. All I could think about was that I was to run 13.1 miles and I hadn’t pooped yet. My apologies if this is too much information.

This morning, while I was on the toilet, my running guide texted me that she was outside. I texted back, “Pooping. Be out in a few. Sorry if that’s TMI.”

During that drive to the half marathon last May, Kim told me about a podcast I might really enjoy. This podcast is hosted by two mom runners. This podcast talks about all sorts of stuff from running, to gear, to balancing kids, to diet, to even pooping and breast feeding schedules.

I haven’t been much of a podcast person. I enjoy spending way too much time on Facebook, reading blogs, books, and turning on my audiobooks on the Bluetooth speaker while I’m doing chores around the house for entertainment.

I guess I’m into Podcasts now thanks to the discovery of this one.

This one is called, “another mother runner.”

If I knew how to insert hyperlinks from my phone, then you could just click on, “another mother runner,” it would take you straight there.

Since I’m not willing to dedicate the time to learn something new. Since I don’t have any working Wi-Fi in my house and don’t feel like tethering my phone to my computer to hop on it’s hotspot, you’ll just need to google up, “another mother runner,” to find the podcast for yourself.

Me, I’m going to finish this glass of wine. I’ll make sure the kids have brushed and floss their teeth. Finally, I’ll enjoy a good nights sleep, because I am just another mother runner who woke up at 4 AM to get in a 6 mile run before my kids woke up.

I am just another mother runner who has found my Zen through running.

I am just another mother runner juggling a crazy hectic schedule, a marathon training plan, kids, a husband who is just slightly on the OCD side of keeping a clean house, I am just another mother runner who feels great after getting in a good long run.

I am just another mother runner who happens to be blind.