17 tips for talking to and acting around a person with a disability

Through my interactions as Ruby’s mom over the last 13 years, I have come to the conclusion that there are a lot of people who don’t know how to talk to, act around or speak about individuals with a disability. Whether it’s ignorance, lack of exposure, bigotry, fear, or unkindness, people with disabilities are often treated in ways that hurt them–and their caregivers–deeply.

–The time the checkout attendant told me she would pray for Ruby (because obviously to her she was less than perfect and needed to be fixed)
–Inappropriate personal questions asked about my child’s medical history by total strangers
–Every “I’m sorry” received when I told someone my child has a disability
–The staring…all. the. time.
–Every utterance of the “r-word,” whether a joke or an insult
–The time one of my higher ups told a short bus joke in a meeting and I had to fight back the tears in my eyes so I could remain professional
–Cruel messages and comments on social media made about my child’s appearance

These are just a handful of the experiences we’ve had. And in many ways, Ruby is shielded from them because of her vision impairment and developmental delays. But some individuals with disabilities experience this treatment firsthand every single day–and it’s extremely painful.

After receiving a particularly ignorant message on Instagram a couple of weeks ago, I realized that just sharing photos and videos of Ruby was not going to be enough to help some people understand how to treat individuals with disabilities. So, I took to my story and began sharing the first couple of tips that came to mind. I asked our amazing followers to send me their tips so I could share them as well.

Over the next 24 hours, we received more than 50 messages and I shared 27 tips to our story! Since stories disappear after 24 hours, I wanted to share them on this blog, where they can live forever. I realized that some of the tips posted on our story were redundant, so I have condensed the list down to 17. I hope you’ll share this list and download this PDF that you can email, print and post at school, meeting rooms, workplaces, libraries, and anywhere you think people would benefit from it.

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My “WHY”

I never, ever imagined that a silly little video that I posted of Ruby on Instagram would go viral. The thought never even crossed my mind.

And then it happened.

At first, I was scared half to death of what was happening. Likes, follows and comments were coming at me so fast, I couldn’t keep up with it all. I saw a few mean comments about Ruby and I was in tears. “What have I done?” I kept asking myself over and over. I felt like I had suddenly thrust my sweet baby girl into a cruel horrible world. Even though I could shelter her from the cruelty, I wasn’t sure my heart could handle it. I found myself frantically checking every single post on my page for any sign of negativity.

My first instinct was to delete the video and close down our page. Make it all go away. Go back to being Angie and Ruby before we were @angieandruby. Hide Ruby away from the world so I didn’t have to face the painful words of total strangers.

But then, the kindness flooded in. So many messages from so many people telling me that they had watched every single video of Ruby and they wanted more! She gave them hope, made them smile, relieved depression and anxiety, and made them laugh. And then it clicked for me….this was all supposed to happen this way! I was being shown that Ruby’s love and light was needed by others–and on top of that, I had been given the channel in which to share her with the world!

Beautiful flower crown by Prairie Blooms Boutique

So, I took a deep breath and I posted another video, another photo, did an interview with the local news….and the kindness just kept pouring in. I saw that our followers were not going to tolerate any mean comments about Ruby. And I relaxed. I stopped worrying and resisting and decided to make @angieandruby a community of acceptance, hope and love.

The truth is, I get so much joy out of sharing Ruby and reading the comments to her. Ruby and I try to respond back to everyone who sends us a private message, often with a personal video. I feel that it is important to engage with our followers and give back to those who take the time to send us a message. It also helps Ruby to connect with the people who love her so much in a way that resonates with her!

But still, that old nagging fear is never far away.

This weekend, I was contacted by a popular Facebook page that would like to create a video about Ruby. I felt fear rush back into my heart…what if people say mean things, what if they spin the message in a way that I don’t agree with? What if I am doing everything wrong?

And then I remembered WHY I am doing this: Because Ruby was put on this earth to spread love and light–and I am here to help her.

Ruby and I will be going live on Instagram at 5:00 p.m. CDT on May 31. Please ask Ruby questions in the comments and I will read them to her so we can all giggle at her responses. We are so excited to interact with our fans in real time! 🙂

XO,
Angie and Ruby

Ruby goes viral

On May 16 around 6 p.m., I posted a short little video of Ruby on Instagram. She was answering some silly questions that our friends had asked her, like, “what’s your favorite animal?” “Who is your favorite person?” and “do you like squirrels?” I thought it was adorable and it might bring a smile to a few people’s faces.

 

I woke up the next morning and casually checked my Instagram….and I saw that the video had gotten more than 21,000 views overnight! I was completely blown away. Little did I know, this was just the beginning! I checked again around noon and the number had soared to nearly 70,000 and I had gone from 700 followers to about 1,500. Over the next three days, that video would be viewed more than half a million times and we would get 14K new followers!

I received countless messages from people telling me that Ruby had brought them incredible joy, made them smile for the first time in a long time, or just letting me know that she was a blessing and a miracle! Out of all the comments, there were about 20 negative ones, which I promptly deleted. It was truly amazing.

 

I was blown away by how much Ruby was touching people’s lives. And though I was scared that there would be more negative comments, I knew that something really special and important was happening here — Ruby was shining her bright, beautiful light into the dark corners of the world! And it was my job to spread it everywhere I could.

When people reached out to us, they asked if there was anything they could do for Ruby. They wanted to send her gifts and money. I had an idea — what if I could harness all of this positive attention into something really amazing for Ruby? And the idea of starting a Go Fund Me for a service dog was born! I had always wanted to get Ruby a service dog, but the fees for some of them are pretty crazy and most require a couple of weeks at a training camp, so I kept putting it off. Now that our beloved dog Stella is 12 years old, I felt like it was the perfect time to set the wheels in motion. I set up the page on May 18 with a goal of $15,000, thinking that it would take months to raise that much money. In the mean time, I would put in applications for various service dog agencies. By that evening, we had already raised $800. I could not believe it! But just like the Instagram post, things kept getting crazier. By May 22, we had raised more than $15,000! I was in complete disbelief and so very grateful for all of the love and support we had received!

On Monday morning, May 22, I received an email that Ruby’s story had been featured in The City Pages. I could not hold back my tears as I read the article — it perfectly captured the essence of Ruby’s personality and the special bond we share.

 

In Lakeville, Minnesota, Angela Ardolf’s daughter likes Frozen, dislikes squirrels, goes viral [VIDEO] | City Pages

These are some good answers.

Something told me that this story was worth sharing even wider, so I contacted WCCO and asked if they would be interested in meeting Ruby. On Tuesday morning, May 23 at 11:00 a.m., I received a call from reporter Kate Raddatz that she wanted to do an interview with me and Ruby…that day! EEEK! My mom rushed over and helped me get my house camera ready and we had so much fun hanging with Kate and her amazing photographer Melissa Martz. They made us feel so comfortable during the interview process!

 

Kate let me know on Wednesday morning that the story would air that night, so I quickly assembled some of our closest friends and had a little viewing party! Ruby had so much fun seeing herself on TV! 

I figured things were going to finally settle down a bit and we would return to our new normal of Ruby spreading her love and joy all over Instagram. However, on Friday, Love What Matters contacted me and asked if I would be willing to share Ruby’s video on their Facebook page, which has 6.8 MILLION followers. I thought long and hard about this….did we want to keep going with all of this exposure? My heart said yes…this was exactly what we were supposed to do. The post went live on Friday around 6 p.m. and in a few minutes had already been viewed a few thousand times. I had a blast on Friday night reading and responding to all of the lovely comments, which are so full of love for Ruby! As I’m writing this, the post has 951k likes and nearly 1,300 shares!

People on Facebook started reaching out to me, asking if I had a Facebook page for Ruby. Because I had absolutely NOT prepared for her video to go viral, I hadn’t created any other pages for her. I quickly pulled together a Facebook page and shared a few of her Instagram posts there.

I also quickly cleaned up this blog, which has been sitting dormant for far too long. I had always wanted to get back to writing about Ruby, but life has gotten in the way. Now I know that I don’t have an excuse! I MUST share our journey with the world. Since you’re here, please take a minute to read our About page. It will really help you to understand more about Ruby and how we have gotten to this amazing place.

Today just happens to be my birthday and I am sitting here reflecting on all of the amazing miracles that have transpired in our lives. Ruby is healthy, happy and spreading her love and joy far and wide. We have overcome so many challenges over the years and I feel like these moments of serendipity and bliss are the sweetest gift I could ever receive.

Love,

Angie and Ruby

Home is not a place — it’s a feeling

Merry Christmas eve! This morning I’m sitting on the couch, enjoying a cup of hot tea and some moments of silence while Ruby sleeps, hopefully dreaming of sugar plums, presents, and the mystery of Santa Claus.

Christmas eve has always been my family’s most important holiday. We all gather that evening for a delicious meal and we open presents for hours, taking time to savor each special gift received. It didn’t matter what was going on in our lives, Mandy and I always found a way to make it home for Christmas eve, sometimes driving through crazy Minnesota snowstorms with my mom pacing in front of the window waiting to see our headlights. It was so important that we were all home together.

The year Ruby was born, our tradition of coming home was disrupted for the first time. Ruby was still in the NICU in Minneapolis and my parents lived 100 miles away in Albert Lea. That year, my family came to Ruby and me.

There was a rule in the NICU that only two people could be at a baby’s bedside at a time, but the nurses broke it for us that day so that we could all be together with Ruby. It was the first time since she was born that we were all in the same room and it was wonderful. When we left the NICU, I was sad to leave Ruby behind, but I was full of gratitude for her life and my family’s unending support.

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Christmas Eve, 2004

That night, we had dinner and opened presents in my tiny one-bedroom apartment, and I realized for the first time that home is not a specific place, but rather a feeling that you have when you’re with the people you love the most.

I hope you all get to go “home” this Christmas season.

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Happy golden birthday, Ruby Lynn!

IMG_3965The morning Ruby was born it was 20 degrees outside — the coldest day so far that fall. I woke up that morning around 5 a.m., shaking violently with nausea and cramps. I had been in the hospital for nearly two days, waiting slowly while my cervix “ripened” and they prepared to induce me with pitocin. I’m not sure how I managed it with unstable legs, but somehow I took a shower. When I laid back down in the hospital bed, my mom and sister arrived. I told them that I was pretty sure I was having contractions. My mom grabbed a nurse and within a matter of moments, I was ready to push. It went against every single cell in my body to hold back while I waited for the doctors and nurses to arrive. In just a few minutes, there were 15 people in the room, and with two pushes, Ruby was born at 7:10 a.m. My dad had hoped to be there for the birth, but he was too late. No one knew she would come so quickly.

I always thought that the moment Ruby was born, I would be full of fear — that she wouldn’t take her first breath or that her condition would be far worse that anyone anticipated. But somehow, when she made her arrival, I felt peace and calm wash over me. After some of the sweetest cries I’ve heard, they whisked her to the other side of the room, cleaned her, and delivered her to me in a warm blanket. I could not believe how small, beautiful, and precious she was, my little earth angel. I kissed her on the lips and examined her face and minuscule fingers. A few minutes later, they took her away again, this time to the NICU. Thankfully, nana was able to be there to stroke her head and hold her pacifier while she endured so much poking and prodding.

IMG_4010The first year of Ruby’s life was filled with so many unknowns, so many doctors making predictions, delivering bad news, asking me to make decisions that would affect her life forever. Most nights, I cried the entire way home from the NICU, my spirit crushed by the doctors’ lack of hope, my arms aching to hold my little girl. I’m not a very religious person, but prayer became my comfort, my lifeline: whispers to God to help me survive, maybe even thrive, in this new life I had been given. Prayers not to be taken under by the heavy burdens that were rolling over me like tidal waves.

It’s so easy looking back now, 11 years later, to see how it all had to happen the way it did to bring us to the beautiful present moment. I needed to walk through fire and burn away the residue on my heart and soul to become the mother that Ruby truly deserved. I needed to be vulnerable and raw and learn how to ask for help. I needed to hit rock bottom and claw my way back up from the depths — many, many times — to fully comprehend and appreciate the incredible gift that I had been given.

Ruby has shown me how to rise up from pain and sadness and transform it into hope and faith. She has taught me how to be patient and brave in the face of life’s unknowns. And most importantly, she has shown me how to love fiercely and without conditions. While I give Ruby love and support and a safe home, it is ME who has grown the most over the last 11 years, and ME who reaps the most from our mother/daughter relationship.

IMG_3981This little girl has touched so many lives, many more than I will ever know, more than she will ever comprehend. I hear how she inspires others and I see the many friends she has and my heart could burst wide open with love and pride and gratitude. This life has become so much more than I ever expected or prayed for — more beautiful than anything I could have dreamed of in those dark early days. There are no words to express my gratitude for my family, my friends, Ruby’s teachers, therapists and doctors, and every single person who has walked beside us on this incredible journey. We would not be here without each and every single one of you.
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Happy 11th Golden Birthday, Ruby Lynn. You are the light of my life and the greatest love I will ever know.

Ruby’s summer recap

This unseasonably chilly weather has me thinking of fall and reflecting back on a truly amazing summer. Ruby had so many wonderful new experiences and learning opportunities this summer. While we are sad that school is only a couple of weeks away, I feel content knowing that we maximized each weekend. Here are some highlights of Ruby’s summer:

We joined some friends at the Elko Speedway for our first auto racing experience. Ruby loved the loud cars (note the earplugs) and the excitement when cars crashed. We thought about staying for the drive-in movie, but it was getting late and the weather was a little iffy. We will have to try that again someday.

Elko 1 Elko 2

We zipped around the local trails on Ruby’s snazzy new adapted bike. It took a while for her to decide on the color, but I think she made a wise choice with pink, don’t you think? She is doing such a great job pedaling and is getting better with steering, though I’m very grateful the bike came with a steering handle in the back. It has saved her from having a few crashes with curbs and parked cars!

bike

Ruby played on the Miracle League baseball team again this summer, which is an adapted league played on a flat field to allow kids of all abilities to participate. She was blessed to have several of her friends from school come to the games and help her out as a “buddy.” She made so many wonderful new memories this season and we are looking forward to four weeks of baseball in October!

baseball 1 baseball 2

Ruby took adapted swimming lessons this year and she loved it! She worked on laying on her back and putting her face under water, which actually came in handy a few times this summer when swimming got a little wilder than expected!

swim lessons

Ruby had many play dates this summer! She had friends over to our house, we met up for ice cream, went to birthday parties, and went swimming and biking. It was a blast!

IMG_4305 IMG_8104 swimming basketball

We took our annual family vacation to northern Minnesota in July and Ruby really enjoyed an entire week of fun in the sun. The weather was amazing. We attempted to tube behind the boat this year, but quickly realized that Ruby is probably not ready when we got thrown off the tube and dunked into the lake. She was not happy about that! We’ll try again in a couple of years!

up north 1 up north 2 up north 3 up north 5 up north 4

Ruby had five weeks of summer school, which were packed with lots of great learning opportunities. She enjoyed working on Braille, doing crafts, singing, and playing lots of fun sports in adapted phy ed. Here’s a picture of her attempting to throw a horse shoe.

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Ruby got to see her great-grandma Ardolf last weekend. She turns 101 in September and is having some issues with her memory, but she always seems to remember Ruby.

grandma

She had a ton of run at both of her daycares this summer. She went to the zoo, park, beach, and the Dakota County Fair to name just a few of the many places they explored. Her friends Olivia and Mattie did her nails every Friday all summer long!

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Overall, it was a wonderful summer. Ruby is looking forward to seeing all of her friends at school and learning so many new things this year. I hope your summer was as sweet as ours!

Love,
Angie and Ruby

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Eleven years

1236918_10151632575113388_2020358377_nToday marks the day that 11 years ago, my dear, sweet friend and Ruby’s father left this earth. This year, like every year in the past, I ponder what life would have been like if Cliff was still with us and I feel immense sadness over all of the unanswered questions I still have for him.

In the early stages of my grief, I was angry at him for what felt like abandonment of Ruby and me, but as time has gone on and I’ve learned more about suicide, I know that Cliff felt like he had no other choice. Depression had taken such a firm hold on him that he couldn’t see beyond the sadness to the better days that would surely lie ahead if he kept going. He was walking down a dark tunnel and the only light he could see was at the end of his own precious life.

Even just a few years ago, when people asked me how Cliff died and I shared that it was by suicide, they often gasped out of pure shock. Today, the reaction is always one of sadness, but the shock seems to be less. I can only hope that this is not because suicide has become more commonplace, but because we are talking about it more openly and honestly than ever before. As we share our stories of pain and suffering over the suicide of a loved one, my deepest hope is that it will inspire someone who is standing on the edge to think twice before jumping.

Still, the question that haunts me most is how to talk about Cliff’s death with Ruby. As her understanding of the world increases, she sometimes asks me about dads. Surely, she cannot comprehend death (much less suicide) the way a typical 10-year-old can, so I have to be very careful in how I respond. I have told her that her dad’s name is Cliff and he’s in heaven watching over her, just like my parent’s dog Sophie and her great-great aunt, Bessie. I’ve shown her pictures and talked about some of my favorite memories of him. She seems to comprehend this information on a basic level, but it’s not enough — it will never be enough.

It makes my heart ache to know that she has this gaping hole in her life that I simply cannot fill on my own.

The same gaping hole in my heart that will never be filled.

One child

The school year is officially a wrap and I’m overwhelmed that my fourth grader is now just three months away from being a fifth grader. This year was amazing for Ruby in so many ways, but what’s really special is how she has strengthened existing friendships and made so many new ones. School is a place where Ruby just fits in, no questions asked. The kids go out of their way to include her and make her feel like she’s a winner, even when she can’t do the same things they can. They don’t see her disabilities — they just see a friend.

IMG_8012Last week, I stopped by school on field day to watch Ruby take part in some of the activities. When it was her turn at the long jump and limbo, every single kid in line clapped and cheered for her, which put the biggest smile on her face. During the dance party, her friends took her hand and helped her through some of the moves. Outside at the watermelon eating station, they all gathered around and talked to her. It was amazing to see firsthand how accepted and loved she is for exactly who she is.

A couple of days ago, her wonderful para Kim sent me this photo of Ruby sitting outside with her friends and it totally choked me up.

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This picture is the perfect illustration of how accepted and loved Ruby is. Both of her hands are being held and all of the girls are looking at her and talking to her. They are including her in the most sweet and amazing way.

I’m sure these girls have absolutely no idea how much brighter they make Ruby’s life, or how their friendships help this momma sleep a little better at night. They are just doing what comes naturally to them, which is being kind and compassionate to a friend.

It only takes one child to start a trend like this: one child to take my child’s hand and show everyone else that it’s fun to make friends with kids who aren’t the same as them. One child to dance with my child in the gym and show everyone else the joy that she gets from rocking out with friends. One child to ask my child for a playdate and to tell everyone at school how much fun it was. One child to make a “Cute Queen” crown for my child, and to inspire the rest of the class to make one, too.

It only takes one child to put a smile like this on my child’s face:

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Choosing life against all odds

This morning, my Facebook timeline was filled with stories and photos of a couple who gave birth last night to a baby boy named Shane. These young parents found out in the early stages of their pregnancy that Shane had a neural tube defect called anencephaly, a condition that is incompatible with life.

They had two options at that point: abort their baby or carry him to term. They chose the latter, and they dedicated the remainder of their pregnancy to checking items off #shanesbucket list: going to the zoo, baseball and hockey games, trips to the orchard and New York. They chronicled all of their adventures with Shane on their Facebook page, Prayers for Shane, and they never gave up hope that Shane would come home with them from the hospital.

Baby Shane died peacefully in his mother’s arms at 6:15 this morning. My heart aches for this family, yet I am so glad that they chose to carry him to term and to celebrate his life in such a powerful way.

When I was pregnant with Ruby, doctors told me that there was a very high likelihood that she wouldn’t live to take her first breath. My perinatologist strongly suspected that Ruby had Trisomy 18, which causes numerous issues including heart defects, and has a very low rate of survival (she was wrong). I was told not so subtly that I could have an abortion up to 24 weeks, which I obviously declined. I had already made up my mind that regardless of what disorder Ruby had, I would carry her for as long as my body would allow, and I would love her whether she lived a minute, an hour, a day or 100 years.

This choice might seem heroic, but let me tell you, it was purely selfish. I had grown to love my baby girl with all of my heart and I wasn’t ready to let her go. I wanted to feel her kick for as long as I could, and when she was born, hold her in my arms, kiss her lips and tell her I loved her. I wanted to give her a chance to live. And if she died, I wanted to be there, whispering in her tiny ear that she was the prettiest little girl I’d ever seen and I’d spend the rest of my life waiting to see her again. I wanted to know that regardless of what happened, that I would never have any regrets.

I feel so blessed that our story has a happy ending, but my heart breaks for parents like Shane’s, who hold onto life for as long as they possibly can, only to have it taken away. The one thing I know for sure is that his parents will never have any regrets for choosing to carry Shane to term. Because a single moment of life can be cherished for a lifetime.

Now and then

Ruby’s birthday is nearly a month away. It’s hard to believe that I will soon have a 10-year-old little lady living under my roof — a girl who has defied every single odd and overcome every challenge placed in front of her.

Looking back 10 years, it’s hard to believe that we are ALREADY here. My pregnancy was short, but it seemed endless, and the first year of her life was so full of challenges that it seemed like an eternity before I surfaced from the newborn fog. Then, suddenly and unexpectedly, one day, life actually became pretty easy.

Sure, maybe it’s not easy by typical standards. Yes, I have to help Ruby with certain things that other 10-year-olds don’t need help with. I need to get in the pool with her at birthday parties (EEEEK), and help her steer the cart at the grocery store so she doesn’t take people out in the aisles. Her para has to film her school concert practices and send them to me so we can practice extra hard at home, just hoping that she will remember the hand motions during the show. And for as much as we’ve tried potty training over the years, it’s just not sticking. I’m not saying woe is me here — these are just the realities of raising a child with special needs.

1907348_10152109503038388_4300854102487122553_nBut this girl who doctors said wouldn’t talk, walk, or do much of anything at all — this girl has conversations in Spanish with Latinos at authentic Mexican restaurants, she knows how to put her shoes on the right feet all by herself, and she knows every single word to every song on the radio. Her favorite past time is calling people out when they say something wrong (how dare I call her boots SHOES!) and she tells me every day when we get home that the buttons on her coat are “kind of tricky.” She is so loved that her entire third grade class competed to see who could create the best “cute queen” crown for her. THIS little girl has an amazing personality and she’s hilarious, too. Take our conversation this morning, for example:

Ruby: “Mom is it going to be sunny today?”
Me: “No, I think it’s going to be windy.”
Ruby: “No, it’s going to be sunny.”
Me (now messing with her): “No, it’s going to be windy.”
Ruby (now messing with me): “Don’t say windy again!”
Me: “Okay, fine it’s going to be sunny.”
Ruby (now laughing): “No, it’s going to be windy!”
Me: “Ahhhh, you stinker!”

This girl is nothing like what doctors predicted she’d be. She’s a miracle and a true testament to the power of faith and love. It might not always be easy, but let me tell you — it’s always worth it. And I wouldn’t want my life any other way.

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