Wednesday, May 4, 2016

Blind Mama on the Go: Guide Dog and Two Kiddos in Tow

Child playing with a wooden toy airplane, she wears
pilot goggles and hat.  
Travel with kids can be a daunting task!  Shortly before we left for California I saw a poll of area parents asking how they feel about traveling with toddlers, and asking for tips and suggestions for travel with toddlers in tow.  One of the resounding responses was, "DON'T!"  Hah!  Goes to show that all parents have some level of anxiety around traveling with little ones.

For the most part, I actually LOVE traveling with our children!  When we made a large trip like this last, the Preschooler was then a baby, and the idea of traveling with her felt much more intimidating, but even then it went really well!  She slept during the flights on that trip.  During our most recent trip, she  mostly played games on the iPad and watched movies--fighting sleep as much as humanly possible until she passed out five minutes before landing!

As a guide dog handler, our family typically travels not only with two adults and two kids in tow, but also 50 pounds of furry guide pup goodness and all that comes with her!  Everyone has their own ways of doing things...  Here are a few of the things I did for this trip that made a world of difference!

Guide Pup Food:
For shorter trips, I generally pack Megan's food along in a Ziploc bag in my checked luggage..  I wear a reward pouch on my waist that I keep enough food in for both any reward I intend to give her, plus her meal upon arriving at our destination in case there's any issue with our luggage.  In this case, e were going to be in California for a full week and we wanted to maximize our luggage space, so we calculated her food need for the week and used Amazon Prime to have an appropriate size bag of food shipped to our hotel.  I contacted the hotel and asked how they prefer I label something to be shipped to myself there, and they were very helpful.  When we arrived in San Fransisco, Megan's food was at our hotel waiting for us!  Prior to our trip, I also checked the status of Amazon Prime NOW in the area we would be visiting--they cover that area, so it was something we kept in mind in case we needed something (we didn't however, and there were obviously plenty of accessible Walgreens and Target locations to grab any necessities!)

Babywearing / Toddlerwearing:
I cannot say enough about the benefits of babywearing / toddlerwearing, especially for blind parents who travel with a cane or guide dog.  There are TONS of options for babywearing infants and small toddlers, but far fewer for children the age and size of our Kiddo (she's just over 30 pounds and nearing 4 years old).  We have both a Beco Toddler and a Kinderpack Preschool--both are extraordinarily comfortable and allow me to wear the Kiddo for extended periods of time without discomfort!  This is HUGE for us because I have Rheumatoid Arthritis and even shorter periods of time holding the Kiddo (in my arms, without a carrier) generally result in a good deal of pain and stiffness.  The TSA also allows parents wearing a baby/toddler to pass through security without removing the child from the carrier which can be a great time and sanity-saver for parents traveling with young children as well.
Beco Toddler soft structured carrier
Kiddo in the Carseat:
Lugging the carseat around the airport may be inconvenient, but if you're going to Gate Check your child's carseat anyway, you're carrying it the same distance!  We choose to install the Preschooler's carseat on the plane for a couple of reasons.  Always check to see if your carseat is FAA approved.  The Kiddo uses a Diono Radian, which is heavy to travel with, but we love in terms of safety and comfort.
1.  It keeps her carseat out of the underbelly of the plane.  My understanding is that when carseats are gate checked, it can be a pretty bumpy ride, so this keeps kiddo's carseat visible and safe from any damage.
2.  Installing Kiddo's carseat in the plane means keeping Kiddo in her carseat!  Since she rides in her carseat multiple times per week, she's comfortable in it, she's used to it, and she will, on occasion, even fall asleep in it!  She's in a five point harness, so at this point she can't get herself out of the carseat, which means that if she meeds or wants to get up for anything in the airplane, one of us has to help her.  This means that the vast majority of the flight, she is buckled in and contentedly occupied, not trying to move around when we don't want her to.

We're a family of four so when we book our tickets and our seats, we try to sit two and two, and we're careful to situate our seats so that we're directly behind one another with one window seat and one middle seat.  So far, we trade kids--whoever had the youngest on the flight out gets to sit with the oldest on the flight home.  It's a nice way to connect with each of our kids, and it shares the stress of travel with a three year old equally between us as parents.

Two of my favorite people looking back at me on the plane, the Husband and the Tween.
Both are enjoying the free in-flight media and games with their own headphones/earbuds.
We're a pretty technologically involved family and I don't apologize for it.  I totally respect those who have strict limits on electronics, or avoid kids using them entirely.  But, with respect to travel, I'm cool with the kids using an iPad or iPod as much as they want.  When I say travel, I'm primarily talking about flights, train or bus trips, or longer car trips.

Child's fingers touching iPad with headphones attached.
Toys and Books:
We typically try to put together some fun distractions for the kids, that we give to them as we are heading to the airport.  This gives them some new small toys or books (in the case of the Tween) to keep their attention while we travel.  This time, I also got them matching backpacks for the trip--both inexpensive, but served the purpose perfectly, and allowed them to carry some of their own things so that I didn't have to carry everything!  For the Kiddo, different things have fit for different ages, but most recently things like coloring books and a compact set of markers, magnetic dolls with outfits, or small manipulative that keep her hands busy like colorful puzzles have been great!
Photo of the Gonex basic backpack with self-contained pouch that
our girls use for travel.
Snacks and Drinks:
YES!  ALL the snacks and drinks, within reason of course!   We bring one of the Kiddo's Thermos water bottles with so that we have a no-spill option to pour her water, juice, or almond milk into throughout our trip.  We either bring a few favorite snacks with in my backpack or we stop in one of the convenience stores in the airport and allow the kids to choose a couple of snacks to share through the flight.

ALL the snacks!!!
Whatever your travel preferences--I wish you all safe travels, and lots of adventure!!  I love that we're entering this phase of life where we can more easily travel with our children and thoroughly enjoy the adventure!

Up next, some highlights from our California trip--belated with good reason!
Until next time,


Monday, March 28, 2016

Liebster Award! (Dear Auto-correct, This is NOT the Lobster Award!)

Round pink and red image with a red and pink heart
in the center surrounded by the text

First things first, a super-huge, happy, heartfelt, "THANK YOU!" to Holly at Blindmotherhood for nominating Chronicles for the Liebster Award!  This post has been delayed because we were on a most epic family adventure in California (more on that later!).  The Liebster Award is a great way to get to know relatively new bloggers, what drives them, why they write, and to learn about other blogs they love or may recommend!
Image of small signs that say "Lobster Award" in black text on a white
background with a red heart next to them.  One large red heart sits
atop the small papers and reads, "to inspire and to be inspired"

Here we go!  Below are the questions Holly posed to me, with my answers!

1.  How do you want others to describe you and/or your blog?

Chronicles of a Crafty Blind Chick is a bit of a hodgepodge and I'm ok with that!  When I began writing, I wanted to share my day to day as a blind mom, who also loves crafting, organization, cleaning, and home management.  I also have a passion for sharing my experiences as a blind person with others, educating and raising awareness regarding blindness, disability, ability, and working in partnership with a guide dog.  Still, what I hope most for my blog, and my writing, is that those who read it will hear my voice and will know that the things I write are genuine.  I hope that those I reach who are blind can find connection and common experience, and that those parents of blind children who I connect with may see that blindness is just one part of their child's experience and that with the proper skills and techniques, their child will find his/her passions and will have a future filled with greatness!  Perhaps the most universal things I write about are crafts, cleaning, organization, and household management, as all of us have to deal with those things day in and day out, but I'm hopeful my readers find a bit of humor and easygoing nature behind these topics.  

2.  What’s your most favorite aspect about your blog?

I love that my blog can be more than one thing, that writing can touch people in a very personal, intimate way, and yet it can be very functional and purposeful.  I love that my words, at times, bring laughter or tears, and that my experiences resonate with others.  Most of all, I love that through sharing experiences, feelings, fears, concerns, and thoughts, that we can connect with one another!  My absolute favorite thing is when a reader comments on a post and we are able to talk further--I'm just one girl behind a laptop sharing my life as a blind mom, professional, friend, daughter, and so on--I love when I can connect with others!

3.  What’s the issue that you write about that is closest to your heart?

Ability and Empowerment.  Though I did not intend for my blog to be entirely focused on blindness/vision impairment, it is true that being a blind chick that comes into my experience often, and thus is often a topic on my blog.  I wish I could reach every adult in a similar situation to mine and say "YOU CAN DO IT!" or every parent of a blind child and say, "THEY CAN DO IT!".  We all find our way, but sometimes it takes a long, arduous journey to get there.  

4.  Who do you most admire in the blogging world?

This one's easy for me!  I have long read and admired Glennon Doyle Melton of Monastery.  I strive to be as transparent, genuine, and loving in my writing as she is.  Her words and experiences have inspired me for years, long before I began writing, and I will have the opportunity to hear her speak and meet her in June--an experience I am seriously bubbling with excitement for!

The other blogger I have followed for years and admire a great deal is Jennifer Jones of iheartorganizing.  I can easily say I love organization and cleaning, but this girl, she is THE queen of organization and cleaning!  I have never met her, but I have long admired her work, and her "real" voice as she shares projects and processes as she and her husband make their home what their family needs at each stage and phase of life.  

Finally, I love, love, LOVE Melissa Maker at Clean My Space.  Clean My Space does both youtube videos and maintains a blog with more extensive information, but my favorite thing about both is that you can see Melissa's personality and she and her husband's "real" life through their writing and videos.  They share the best cleaning tips and techniques, answer Q&As, and share product reviews, all with thorough research, humor, and with their silliness interjected.  I also appreciate the professional appearance and quality of their work.

5.  If you could be published anywhere, what’s your dream spot?

I can't say I've thought about this...  and I honestly don't know the answer.  When I see that someone has shared my writing, or something I've done, that tells me that they connected with it, something about it resonated with them and their experience, and that is truly the most powerful thing about blogging to me:  connection and sharing!  

I have thought about the possibility of writing a children's book with albinism, empowerment, and ability at the core of its story, but I know very little about the professional world of writing and publishing.

6.  What is one strength about your writing?

One strength of my writing is its conversational nature and my transparency as I share things.  I think readers can connect best when they are able to get to know the author, when the author becomes a real person rather than some bot on the other end of a computer screen.  We all experience adversity, challenges, failures, and successes along this journey--we grow stronger by sharing and connecting through them.

7.  What is one weakness about your writing?

Consistency!  I struggle to write as often and as regularly as I feel I "should", and yet, I am not one to write just because I should be writing a set amount of times per week.  If I don't have genuine, thoughtful content, I would rather wait to post until I do.  

8.  How many hours a week do you spend blogging?

At this point, probably a few hours a week.  As I began writing, I really didn't know if my topics and content would resonate with others.  As I continue connecting with readers and this blog grows, my content and efforts will grow as well.  

9.  If you could choose another creative outlet, other than blogging, what would it be?

My husband calls me a Blind Martha Stewart LOL.  So, I guess the blog content keeps with one of my other creative outlets, crafting.  I enjoy doing artsy projects with my daughters, making decorations for our home and as gifts.  I've always loved the arts--singing, painting, and drawing, so you could say the arts are strong with this one.  

10.  Have you ever traveled in relation to your blog?  If yes, where?

Not at this point, though I am completely open to traveling and/or speaking in relation to the blog and/or the topics I work to advocate and share.

11.  Why should people read “your blog”  when there are so many out there?

I strive to share my experiences, thoughts, and feelings in such a way that they are relatable and genuine without being preachy.  Readers enjoy the connection and shared experiences that resonate with them, especially around topics of blindness, disability, guide dogs, Braille, alternative techniques, and so on.  It's a unique perspective to share, that of a blind mom and professional, perhaps giving insight into an experience that not many see but many wonder about.  I'm totally open to the "How do you..." questions, and am honored to be able to share one voice and experience in relation to those topics.  
Image of a red heart with "LIEBSTER AWARD" printed in white
Now, for the part I was most looking forward to--the opportunity to nominate, encourage, and learn about some of MY "favorite" new or smaller blogs!

Georgie's Vision:  Georgie's Vision Blog documents the incredible team and great adventures of Becky Andrews and her guide dog, Georgie.  Becky is a small business owner, Licensed Clinical Mental Health Counselor, Motivational Speaker, wife, mom, runner, cyclist, and lover of travel and adventure!  Basically, Becky is a rock star and I am daily inspired by her writing, dedication to empowering and helping others, and her love and commitment to her family and friends!

ProjectBrailler Blog:  While I am in the U.S., and Kristy Hooper, founder of Project Brailler, is in the U.K., I believe that level of access to literacy and communication, education, and awareness she and her team at Project Brailler work toward should be adopted worldwide!  Her passion and determination are evident in each post and her efforts to ensure blind and visually impaired children in the U.K. have access to Smart Broilers and, consequently, to literacy!  

This Mom is Top Percentage:  Samantha Ross at This Mom is Top Percentage has very recently begun blogging.  I have been following since she began and I'm excited to see her finding her voice and sharing her experiences!  

Blind Mama:  I love that Megan shares openly her philosophy that blindness is not a liability, it's a lifestyle.  She shares the rich experiences, humorous anecdotes, and bizarre happenings of being a blind mama!  I love her honesty and her sense of humor as she experiences life!

Thanks for taking a peek at Chronicles of a Crafty Blind Chick!  Huge thanks again to Holly at BlindMotherhood!  Now, I'm off to send Liebster (NOT Lobster) Award nominations to the above listed bloggers! 

Watch for posts in the next couple of days from our totally awesome family adventure in California of epic proportions!  I'll share some Blind Chick travel tips as well!

Until Next Time,

Thursday, March 10, 2016

Don't Cry Mama... Every Little Thing is Gonna Be Ok....

Mom-Worry is different from any worry I've ever experienced in my life.  It's stronger and more direct to the heart than any worry I've ever had for myself or other family or friends.  We worry that they'll get hurt, that they'll get a sunburn, that they'll wake from a nightmare and feel lonely and scared, that they won't make friends, that they feel included, that they learn and develop and grow with this concept of "normal" and "developmentally appropriate" as our guide.  We tell them to be careful, to look both ways before crossing the street, to use their words, to stand up for themselves.  We tell them lots of things.  And then we give them a hug and they walk out into the world and make their own decisions and try new things and test their boundaries and grow....  And we watch, and pray, and trust....  I've felt Mom-Worry with the Tween, especially around social interaction and difficulty developing friendships with peers at school, and around some things with her academics years ago.  But, it's been a little while since I've felt this level of Mom-Worry....

The Tween practicing violin.
Today, we dropped the Threenager off at Preschool and as she ran off to play at the sand table, we had a mini-conference with her teacher in the doorway.  See, after returning from three weeks of sick time in February (she does two days of preschool per week, so in the Life of Threenager, three weeks is a Very Long Time), we began encountering some challenges.  Her first day back, she had her first meltdown at school...  and it was Epic.  She screamed and cried inconsolably for over an hour, until she tired herself out and finally fell asleep on her nap cot.  Her teachers and early ed supervisor tried everything they could to calm her--and when that didn't work they called us.  Now, she has shown us some pretty epic meltdowns at home, but this was the premier performance at school.  While the Husband and I know that she calms from one of these meltdowns by sitting alone in a quiet space, and that trying to help her through it tends to aggravate her more, school didn't know that.  We picked her up early that day, and we both approached the following weeks with apprehension, wondering if this was a one-time, out of sorts, very bad no good day kind of thing, or if this would be a persistent issue.  A couple of weeks passed with no issues.... and then Tuesday, two emails, two meltdowns, not as epic as her premier performance, but still challenging.  She doesn't handle transitions well.  She doesn't handle change well.  She's the youngest in her class--so she has room for development and maturation.  She's incredibly bright and creative, highly verbal though she doesn't always choose to use her words, she can focus for hours on a task, and she draws and colors like no three year old I've ever met.  We know these things and we're working on them--encouraging her strengths and trying to work on her challenges.  Some days I worry that there's something more going on for her than just normal Threenager stuff, and other days I'm convinced that this is Three, this is what Three looks like, and it's so, so hard, but we'll walk through it together and Four will be better.

The Threenager's drawing of a Whale Shark:  Blue marker on a white paper.
But, today, standing in the doorway mini-conferencing with her teacher, I felt tears prickling at my eyes, I felt my throat tighten as I talked through those feelings of worry, uncertainty, and powerlessness.  Worry that this may not be Three, uncertainty I guess regarding my parenting...  am I doing something wrong, and powerlessness because when she's at school there's so little we can do.  We can communicate and continue working on these things at home.  School can communicate and we can all share ideas or tell each other if something is working.

As we walked toward the car, the Husband said to me, "It looks like you're having a harder time with this than I am even." and I didn't say anything, because I knew he was right.  Instead, the tears that were threatening before poured down my cheeks as we walked out of the school into the cool Minnesota breeze.  As I sat down in the car, I thought to myself what I tell Mom-Friends all the time...  "This too shall pass.  Don't be so hard on yourself.  Don't fear, Mama, everything is going to be alright."  I can't tell you how many times I've said these things to friends...  Friends who were struggling, or who found out that their child is on the autism spectrum, or has a disability that they had never envisioned as they saw their beautiful, precious, perfect unborn child by ultrasound, or held him on her bare chest immediately after he was born, or while decorating the nursery and reading "What to Expect When You're Expecting".

And I thought...  How must my Mother have felt???

She spent her entire pregnancy dreaming, hoping, getting to know this perfect little baby inside of her, growing, kicking, even the tiny little hiccups.  She labored for hours upon hours to bring me into this world, knowing with every horrendous contraction that she was about to give the most incredible gift possible, the gift of life.  And then, there I was...  Beautiful, but different.  Wonderful, but presenting a new world filled with uncertainty...

They handed her this stunning baby girl, with the white hair of an angel, blue grey eyes filled with the sky on one of those perfectly peaceful dreary days, and the fairest skin imaginable.  And they told her...

"She has albinism.  She may be blind."

And, she cried.  My grandma cried.  My family cried.  This was not what they had dreamt of.  This was not what they had hoped for, or prayed for, or expected.  This was not what they knew.  And they worried.  And they feared.  Would she be blind?  What would she see?  Would she succeed?  Would she make friends?  Would she be ok?

"Don't Fear Mama.  Every Little Thing is Going to Be Ok."

She WILL be ok, she will be more than ok, and so will you.  She has YOU and YOU are perfect for her.  She will face challenges, struggles, adversity.  She will fail sometimes.  But, she will learn.  She will find her way and YOU will help her.  She will amaze you!  She will do great things.  She will do hard things.  She will find and embrace her beauty and differences--it might take a while, but it will happen.  Believe in her.  Believe in yourself.  Believe in the dreams you had all of those months as you waited to meet her and wondered who she would be.  Those dreams are still there, getting to them just looks a little different now.

And, I know that whatever this is that's going on with our Threenager...  Whether it's Three, or whether there's something more, it's going to be ok.  I need not fear.  I need not worry.  She is our precious gift, and we are perfect for her.  Every little thing is going to be ok.

Closeup of Katie and Evie reading a book together.  Evie is sitting next
to Katie in our oversized living room chair and pointing at the book.

Saturday, February 27, 2016

Leave the Acting to Hollywood: Embracing the Authentic Self and Blindness

Image of yellow post it note with red push pin with
the words "OUT SICK" and a sad face.
Once again, I must apologize for the lapse in writing...  You guys, living in Minnesota right now is like living in a petri dish full of the flora and fauna that make up nightmares scarier than any monsters under the bed.  The Toddler spent the vast majority of the month of February sick.  She missed three WEEKS of preschool, I had to pass my volunteer commitments off to someone else for the month, and I cancelled every Braille class I had planned to attend.  I made it through the Toddler's three weeks of Sick unscathed and then, as she returned to preschool, BAM, it was my turn!  I can't complain though, the forecast for today shows a high of FIFTY-FOUR degrees, in February, in MINNESOTA, and my sniffling, sneezing, coughing, stuffy-nose, watery-eyes self WILL be outside!

That all has nothing to do with today's post, other than to apologize for my status incommunicado.  This week while I've been feeling under the weather, I've had some seriously amazing opportunities to "meet" new people.  A friend began blogging her adventures as a new mama with a disability, which you can follow here, and I couldn't be more thrilled!  She's a super-cool chick, a strong woman, and mommyhood looks so perfectly beautiful on her!  Yep, she has a disability, and her perspective and experiences will be a great addition and insight for others to learn and grow from, and to contribute to the world of advocacy, ability, and parenting.  While I was busy sniffling and sneezing, some really cool things happened!

Me, Picassa (my retired guide dog), and one of the
Blue Men in Las Vegas.  Few can remind you that we're all
meant to be unique and impact this world in our own way
than the BMG.
Meeting new people and growing new friendships has a way of reminding me of where I've been, how I've gotten where I am today, and the long and sometimes painful road it took to get here.  Throughout my childhood and adolescence, I was a far different version of myself.  When I was really little, I didn't give much thought to my differences in appearance, or whether I was sighted or blind.  In elementary school, I didn't make friends very easily, I was shy, and while I didn't have the self-awareness to know it then, I lacked self-confidence.  When I began as a new student in second grade, I didn't step out and try to make friends.  I sat alone on the playground, and as fate, and the kindness of one incredible kid would have it, one of the most amazingly confident, beautiful people I would ever meet came up to me and asked me to play.  It is amazing to me to look back now, as a strong, confident, bold woman, and remember how little of that was present in me, and how much of that was present in her, all that time ago.  I don't know if she ever realized how much her role in my life impacted me--as we were growing up, over all those years, I remember looking up to her, admiring her confidence and leadership, coveting it even (We went to parochial school, I never heard "Thou shall not covet thy best friend's confidence!").  As much as I admired her, I had to take my own path to find those things for myself, and it took many years, and so many experiences, for me to find that.

As a child and teenager, most people didn't know I was blind.  Sure, they knew I was "different", the white hair kind of gives that away.  But, my blindness, nope.  They may have known I couldn't see as well as they could.  But, I didn't use a white cane, I hadn't been introduced to assistive technology or the alternative techniques and skills of blindness, and past the point of early elementary school, access to large print became less and less available, so I did more and more of my work at home, where I could lean as close to my books as I needed to and squint my eyes as much as the smaller and smaller print demanded.  I participated in everything I needed and wanted to, acting like I wasn't nervous when visual tasks were involved, trying not to worry about being hit in the head with a ball, pretending I wasn't afraid that I would miss my spot in a gymnasium or performance and embarrass myself in front of a huge group of people.  I was scared to cross the street until I was in my early 20s and attended Adjustment to Blindness Training (ATB), which means that when I went for walks around our neighborhood with my kid brother and sister, THEY were the confident ones, and when they said, "No cars!" I hoped and prayed they were right!

I was one hell of an actress.
I was one very scared actress.
I was one very lonely actress.

The amazing group of friends I had in high school in Illinois.
My family moved to Minnesota when I was a junior in high school.
The childhood BFF is the furthest left in this photo--she's stayed just
as awesome and has only become more beautiful over time!
The thing about being an actress, instead of being your own, perfect, different, authentic self, is that it's a ridiculous amount of effort and an awful lot of work, and fear, and worry.  And the longer I acted, the more I believed the lie that my differences, my abilities, my blindness, and myself with all of these things as part of who I am, weren't perfectly and wonderfully made.  Further, I had built a community of friends, family, and acquaintances who, when they learned I was taking several months away from "normal life" to attend ATB training were..... Confused.  Years later when I chose to work with a guide dog, and would encounter and reconnect with a friend from my childhood or high school years, they would ask if my sight had worsened.  But, those several months, surrounded by other blind people, learning that I could do everything I needed and wanted to do, gave me the confidence I needed to explain these things, to answer their questions, and to realize that it was my exceptional acting skills (hah!) that had resulted in their confusion and curiosity in the first place.

I didn't attend a full ATB training program, rather, I spent a summer between college semesters learning how to navigate and travel independently with a white cane, cook and manage household and independent living tasks without my vision, utilize computers and technology with assistive technology, access books in audio and electronic formats, and I began learning Braille.  I lived in an apartment in a busy and lively part of Minneapolis, and  That time in my life was instrumental.  It was necessary.  Though I didn't know it, that time in my life would be the beginning of me becoming "me"...  Confident, strong, happy, ready to take on and experience the world and all that was to come, "me".  The "me" who knew that my albinism and my blindness are just pieces of me, just like my silly sense of humor, my quirky and kind of sick love of crafting, cleaning, and organizing, my constant love of learning...  Embracing my authentic self has been so much better than acting ever was.

Embracing my authentic self led to embracing life and love.
Nothing could be better.

Thursday, February 18, 2016

Hello, My Name Is...

Pink and white "Hello my name is" label
I realized the other day that in the time since I began this blog, I've shared a few craft ideas and projects, some information regarding blindness and my opinions around advocacy and "inspiration", but I have not shared much about myself, my cause of blindness, or my story.  Some of that will be shared over time and made evident through related posts, but I wanted to take a minute to share a little bit about myself and my story, especially with a number of new people following the blog.  I don't know if I will end up reaching more readers over time or not, and I'm perfectly fine with that.  My hope is that I may reach even one person in a similar situation, or one parent raising a blind child, who my story may resonate with.  It is only through sharing our strengths and our struggles that we may gain strength from one another.

I hold many roles in life.  I am a wife, mother, daughter, sister, friend, and advocate.  I love reading, writing, singing, the arts, crafting, and creativity.  By profession, I am a vocational rehabilitation counselor and have worked with the general population (people with all disabilities) and the blind population (solely serving blind, visually impaired, and Deaf-Blind individuals).  Currently, I work within our home as a stay at home parent.  I am sensitive, hard-working, compassionate, determined, and fiercely independent.  I am forever in search of growth, development, and learning--striving always to become the very best "me" I can.  I am also blind.

My guide dog Megan and I while attending a gala fundraiser
for a local blindness skills training center, Vision Loss Resources.
I am wearing a formal black dress and pearl necklace and Megan
is seated next to me in harness and wearing a pearl necklace.
So, here's the medical low down:

My blindness is due to a genetic condition called "Oculocutaneous Albinism".  In common culture and media, you may have heard of a person with albinism, or you may have heard someone being referred to as an "albino" (more on that later, but I highly suggest not using that term to refer to people).  Hi there friend, that's me!  If you break it down, this means that my skin, hair, and eyes are affected by a lack of pigmentation.  As a result, my skin is very fair, my eyes are a light blue/gray, and my hair is very light blonde.  Contrary to the suggestion of popular media, people with albinism have neither red eyes nor magical powers (too bad really, it would be beyond awesome if I could snap my fingers and have my kitchen clean itself!).

Photo of my parents and me when I was very young.   You can see
that my parents both have normal pigmentation.  I am the only
person in our family line with albinism as far as we know.
There are different types of albinism, something research has only shown over the course of the last 10-20 years, so there is a great deal of variety in both physical presentation (hair, eyes, and skin shades) as well as a large spectrum of visual impairment.  There are individuals who have only Ocular Albinism, in which case the lack of pigment is only present in the eyes--otherwise they have normal pigmentation of the hair and skin.  The spectrum of visual impairment with albinism is incredible to me.  I have friends who have very little visual impairment and are able to drive and safely function as a sighted person.  On the other end of the spectrum, I have friends who have only light perception and some shape recognition, while this is very rare, it does happen.  My visual acuity falls between 20/200 and 20/400.  I am "legally blind", a term originated by the Social Security Administration defined as:

1.  Reduced central visual acuity of 20/200 or less in your better eye with use of the best eyeglass lens to correct your eyesight; or
2.  Limitation of your field of view such that the widest diameter of the visual field in your better eye subtends an angle no greater than 20 degrees.

Definitions are great and all, but most people ask me what "legally blind" means, their question of course referring to "how" I see, and how my residual vision functions.  I would caution you that visual impairment and blindness have so many causes and interactive factors that the answer to this question is entirely individual, and it is very difficult to explain.  I have never seen out of eyes that function correctly, so I have no period of time of perfect eyesight with which to compare my eyesight.  With the medical description in mind, they say that what someone with 20/20 vision can see from 200 or 400 feet away, I would need to be 20 feet away in order to see.  That seems an inadequate description though as well because even 20 feet away I suspect what I see is blurry and very non-descript compared to someone with 20/20 eyesight.  I have substantial photophobia, to the point that, if I am outside on a sunny day or I am walking through a store with fluorescent lights, I typically cannot keep my eyes open, sometimes even with sunglasses on.  My vision is also very poor in darkness with periodic lights (an example would be night time in a residential neighborhood with street lamps and outdoor house lights).  In those conditions, my residual sight is rendered useless.  When conditions are such that I can see, what I see is typically lacking detail, and I suspect blurry in comparison to what someone with 20/20 vision would see.  My functional vision also declines as the day goes on and my eyes become fatigued.  Those who are close to me say that my nystagmus (repetitive, uncontrolled movements of the eyes) is a tell-tale sign when I'm becoming more tired as my eyes move more as I get more tired.

Me, dressed up and ready to go to a fundraiser
for our local library with a theme based on
Mad Men.  Hair, makeup, and my blue rockabilly
dress were all chosen to compliment the theme.
While I've been blind since birth, I didn't learn most of the alternative techniques and skills of blindness until I was in my late teens and early twenties.  The phrase "times change" is so true--when I was a child, kids with albinism were given large print, seated in the front of the classroom, and otherwise taught to function as a sighted person.  There are many problems with this, not least of which is that it was difficult and dangerous.  Difficult in that it took me substantially more time to complete homework assignments because I was straining to use my vision.  Difficult in that I frequently had terrible headaches and neck pain due to poor posture while trying to read and the strain on my eyes and body while trying to use my vision.  Dangerous in that I have no idea how many times I fell or ran into something because I didn't see it.  Dangerous because my eyesight is unreliable and there I was relying on it for things like crossing the street.  Dangerous because this expectation of passing as a sighted person set me up for many years of faking it, pretending I could see better than I could, hoping I was crossing when it was safe instead of knowing it was, low confidence, and shame around the fact that I was blind, shame that kept me from using the tools of blindness regularly even when I was given them.  I don't want this to be misunderstood--my parents and educators did what they thought was best for me.  The access to information, community, and advocacy that parents today have was not present when I was a kid.  My parents did the absolute best they could with the information and professional guidance they had at the time.  If I had been born ten years ago, it is very likely that my parents would have been encouraged to teach me the tools and techniques of blindness, simultaneously offering me access to large print and visual materials.

As it was, my parents never allowed my blindness to result in low expectations.  They expected inclusion and full participation, responsibility, proficiency, and high academic performance.  They expected me to strive for my highest potential.  By maintaining high expectations of me from day one, my parents set the stage for success in all areas of my life--including as a blind person.

So, welcome to my world!  I realize this is by no means a thorough introduction, but I will continue to share over the course of the next few weeks!

Until Next Time,
Vertical rainbow striped background with white letters spelling "Nicole"

Friday, February 12, 2016

Meggie Miyagi: Guide Dog Lessons Beyond Wax On, Wax Off

Female black lab, Megan, sits in harness looking at the camera
with a focused, serious expression on her face.
My Guide Dog, Megan, is a tiny pocket puppy filled with power.  In our five months together, it has become clear we are quite similar--she is me, on four paws. She is sassy, spunky, playful, and curious. She loves to explore, travel, and experience new things.  She's very smart, thinks things through, takes her work very seriously, and once in a while, she gets really anxious and scared.

As a new team, you are working to build a relationship. This beautiful, expertly trained, furry ball of energy enters your life, and you begin to get to know one another--not just who you were--the dog and the girl--but who you are, two together, the team.  Every day, each route, and every new experience you share together helps you become a team.  Unlike getting to know a new friend, you don't have words--you learn from one another and about one another through the leash, harness, touch, movement, and body language. You begin to recognize and sense how your guide is feeling--happy, excited, serious, focused, anxious, concerned, even afraid.  If you are lucky, you get to observe and experience your guide developing relationships with others as well:  other dogs (pets and guides), friends and family (including their puppy raisers), and their trainers and others who have cared for them. And if you really pay attention you realize that our dogs can teach us so much more than we think. Everyday I learn from them, but these are a few things they've tried to teach me...

1. Your success doesn't impede my success--don't hold one another back, help one another move forward. Help one another grow.

Megan and her best guide dog friend, Samurai, sitting in harness
on a break during a route together.  Both look lovingly up at the camera.
2. It's ok to be afraid sometimes. We are ALL afraid of something.

3. Good friends make all the difference. Let them in. Let them know you. Let them see your fears.

4. When life feels just a little too big and scary, a friend by your side is the best medicine.  Watch out for each other.

Megan, Picassa, and the Toddler watching with great anticipation
as the Tween gets home from school.
5. Play!  Have fun!  Romp around with your friends. Cuddle with the ones who love you. Give hugs.

Sammy (left) and Megan (right) laying on the floor out of harness after
romping around playing together for the first time.
6. Be a little naughty. (Just a little.)  An occasional jump up to hug your person when you're in harness. An occasional sniff of the pee-mail along the sidewalk as you're guiding your human. Inching toward your best friend when you're both working to say hello, I love you, I'm thinking of you. It's ok to be a little naughty. Life is better when it's lived out loud.

7. Be grateful. Tell them you appreciate them. Tell them you love them. Tell them how they make your life different, better. Tell them they make YOU better.

Megan (left) snuggling in blankets with her sister, retired guide dog, Picassa (right)
Our dogs, they may not communicate verbally, but if we pay attention, if we show up, we have so much to learn from one another.

Much love,
Rainbow image with white letters "Nicole"

Monday, February 8, 2016

My Sightless Vision for Sweet Tooth Satiation

I have a friend who makes ahhhh-maaaaay-ziiiiiing cookies!  We're talking, knock your socks off, insanely adorable, so cute you don't want to eat them but so yummy you're practically yelling, "GET IN MAH BELLY!" as soon as you see the FedEx guy has dropped them off by your door--THAT kind of amazing!  She made and decorated ladybug sugar cookies for the Toddler's first birthday--they were red and black polka dot perfection!  Last Halloween, she sent me a dozen of her Halloween cookies, and I shamelessly ate 2/3 of them.  They're just THAT good!

After consuming my eight very Halloweeny cookies, I chatted with this friend and said, "You should make guide dog cookies!  Wait, NO, you should make BRAILLE cookies!".  I figured I would submit an order for such scrumptious tactile cookies in the near future....  

And then, somehow, sometime, the crazy crafty side of me decided it would be a good idea to try it myself!  Why NOT, I thought!  It'll be FUN, I thought!  Nevermind that when the Tween turned 6 and wanted one of those Barbie cakes with the "real" Barbie in it where the "dress" is the cake--I had to do some serious dress patching and repair through the use of heaps of icing so big I thought we would ALL be zooming through the house like the Flash after Happy Birthday was sung and the cake was cut and consumed.

But, I did some reading, and I decided, "No fear, Nicole....  It's a cookie...  Worst case scenario, you get to eat some really ugly sugar cookies.  I gave it a shot!  I made a batch of cookies as gift for the retirement of a guide dog training supervisor I respect a great deal.  I figured if they didn't turn out, no harm was done, he didn't know about them anyway--SURPRISE!  But, they turned out pretty well, especially for my first attempt with making and decorating sugar cookies with anything other than a store-bought tub of icing (true story).  My apologies for the lack of fancy setup for these photos, but I was really focused on the task and trying to do just a little better with each and every one.  But here they are, my first-ever attempt at guide pup cookies.  This batch included guide dogs in harness, guide dog puppies in training, dog bones, and hearts (some with the letters "GDB" and others with paw prints).

First-ever attempt at guide pup cookies:  yellow, chocolate, and black labrador guide dogs in harness and puppies in training (wearing green GDB puppy coats, green frosted hearts with "GDB" and paw prints in white, and dog bones in brown and white.

I felt really good about this attempt!  They weren't perfect by any means, but I felt like I had done pretty well for my first try, and certainly, I felt I had done far better than the days of my Barbie cake aka mountain of icing.

I asked for open and honest feedback--and several people gave me their feedback.  I am a guide dog handler but I am not a puppy raiser, so some of their feedback simply had to do with the details on the puppies in training.  They also hoped that I might be able to figure out a yellow icing that would work for the yellow labradors.  In retrospect, they do seem pretty boring with the sugar cookie as their yellow color and the icing of their harness or puppy coat as their only icing.

I realized I really, REALLY enjoyed doing this!  And, I figured that as with everything, I would get better with practice.  I had a friend ask if I would make these for her dear daughter for Valentine's Day--so I said of course and it was time for round two of Project Super Sweet Guide Pup Cookies!  I figured out a lot of things between Super Sweet Guide Pup Cookie 1.0 and 2.0.  I'll post an actual blind chick tutorial soon, but for now I'll just say that even with learning a lot so far, there is still MUCH to learn, but I rarely back down from a challenge and I see perfecting these cuties as a fun and creative challenge right now.  Also, in decorating the cookies, there are definitely some non-sighted techniques that I've been employing, and these techniques often differ from the methods of the sighted decorators I've been learning from.  With creativity and patience, we can find ways to almost anything as a blind person--just doing it a little bit differently.

In addition to the guide pup cookies, I also prepared to work on some Valentine's cookies for my daughters' teachers--I decided I would like to send them heart shaped cookies with red or pink royal icing and I wanted the words on the cookies to be in Braille.  The smaller cookies would simply say, "love" in Braille, and the larger ones will say "love is blind" in Braille.  I've only done a couple of the Braille cookies, but even in their simplicity, they are my absolute favorite cookies so far!!

Top row:  guide dog puppy in training cookies (black, yellow, and chocolate labradors.  Middle row:  guide dogs in harness (yellow, chocolate, and black labradors).  Bottom row:  two heart shaped cookies covered in green royal icing with two white paw prints on each.

Heart-shaped cookie iced in red royal icing with Braille spelling "love".  The Braille dots are made with dark pink and light pink edible pearls.  
I'm hoping the special people these cookies are going to will enjoy them as much as I've enjoyed making and decorating them!  Here's to a very happy and super sweet Valentine's Day ahead!

Until Next Time,
Vertical rainbow strips with white handwritten text spelling "Nicole".