How Danny Keefe Found His Voice - A Most Unusual Story

Danny at Apraxia Walk

By Jennifer Keefe

As a mother of four, my first job is to protect my children to ensure their safety, keep them happy and feel loved. With Danny, my instincts to protect are very different than how I want to protect his siblings.

Danny has childhood apraxia of speech (CAS) and was diagnosed at 3 years old. When asked how he compared to other children with CAS, I was told he was severely unintelligible. They didn't have to tell us that we already knew it as we had a very difficult time understanding him. Although his siblings could understand most of what he said and could help us out.

At home, Danny is treated just like his siblings. No special treatment just another member of the Keefe household. Sometimes I would forget he had trouble speaking and communicating clearly until we left the safety of our house and I would hear children younger than him speaking clearly. It was especially hard watching his younger cousins speak so clearly when he struggled so much. His cousins have always supported him, they say cousins become your first friends, we believe that.

I was afraid to send Danny to school for fear he would get picked on by classmates. It was so hard to let him go off to school when my instincts were telling me to hold on and protect him from potential hurt. I knew I had to send him, he needed it and was ready even if I wasn't.

His years in preschool went well. He made friends. We all felt safe. Then it was time for kindergarten. His first year was OK, some children questioned why he talked the way he did, did he speak Spanish and although they weren't picking on him, the words hurt Danny deeply. I still remember Christmas of 2012 when the biggest gifts he asked for was a world globe. When I asked Danny why he told me so he could show his classmates he was from America like them and not from another part of the world. He wanted them to know that was just like them. My heart broke. I couldn't stop this from happening to him. That year Santa brought him his globe and he was so happy!

Another thing happened that year is that Danny decided he was most comfortable in a suit and hat. He wears a suit seven days a week and walks with confidence, as he should!

This year, Danny repeated kindergarten, not just because of CAS, but it did play a role in our decision. This time, though, he would go four full days and one, half day, which meant he would be at school all day and have to go to recess and lunch. While he was very excited about this, I cringed. I knew for some children that these were times of the day when they should be carefree can sometimes be the worst part of their day.  For Danny that became true.

For the most part, he has more great lunches and recess outings than bad, but when they are bad he cries and I cry. Truly, as a mom, it is the most helpless feeling not to be there to protect your child from bad things happening to them. When he would come home upset we talked about it as a family and our motto was, "it doesn't matter what people think of you it only matters what you think of yourself." It was hard saying it when Danny's heart was breaking, but my husband and I believe this. We would also talk about all of the great people in his life.

One day Danny came home and told me how two little boys took his hat off, threw it and then proceeded to throw mulch in his hair. I was so angry - beyond words - and I wanted to march on that playground and speak to those little boys, but Danny looked at me - not even angry - and told me, 

"It doesn't matter what they do, Mom.  It only matters what I think of myself."  

What I didn't expect, but should have realized, was how these stories were also affecting his siblings. His oldest brother Tim was deeply upset by what was happening to his brother. Tim didn't tell us; he confided in his friends. The friends were so impressed that a six-year-old said that it didn't matter because it only matters what he thought of himself, that one 11-year-old boy started a movement.  The boy didn't know it at the time, he just wanted to support Danny and show Danny that he loved him by also wearing a suit and fedora to school. Then the word started to spread through the entire 5th grade football team that November 20, 2013 was going to be "Danny Keefe Awareness Day." There were 45 boys who came to school to show my son, Danny Keefe, that they love and support him.

My wish has come true.  Danny is protected and it doesn't always have to be just my husband and I, but that our community is also there to help him!

Since November 20th our lives have changed. Locally, schools are sponsoring Danny Awareness Days and everyone dresses in suits and hats. His story is being told in classrooms near and far. This story has been aired locally and nationally. Most recently, Danny sat across from and spoke with Ellen DeGeneris on The Ellen Show and then demonstrated to the world his famous dance moves. 

Even though Danny has Apraxia, Danny's voice is being heard by millions and I'm not afraid for him anymore - (well maybe a little)! He is one of the strongest, most self confident people that I know. We are so proud of him, our family, community and all of those people out there that have taken the time to reach out to us. We feel very blessed and lucky to have this support for our little Danny Keefe.  

As a mom it felt great that the lessons we were teaching actually were paying off, but I felt terrible that he had to endure even an ounce of pain. 

Telling Anna's Story

By David Ozab (Writer and father of a daughter with Apraxia)

I didn't plan on becoming a writer, but I have a story to tell. The story of a little girl who knew what she wanted to say but couldn't make the words come out right. It's a story you probably know and share—why else would you be reading this blog?

It's the story of a girl in search of her voice. Her name is Anna, and she has Childhood Apraxia of Speech.

It took us a while to realize there was something wrong, but about the time she turned two we started to suspect it. I remember one day in particular. My wife Julia and I had taken Anna to our local Gymboree studio for open gym when a little voice caught our ears.

"Help please, mommy."

We turned to see a small boy struggling to climb up the ladder behind Anna. His mom leaned down and gave him a boost.

"Thank you," he said as he climbed the rest of the way up the play structure set in the center of the multi-colored classroom.

"He's a beautiful little boy," Julia said.

"Thank you," his mom replied.

"How old is he?"

"Eighteen months."

The words hit as hard as if the play structure had collapsed on top of us. Eighteen months old and his speech was clear and fluent. Anna was seven months older and we couldn't understand her.

That's when we knew there was something wrong, but we didn't know what it was yet.
Now Anna has always been a smart, creative, and outgoing child. She was already recognizing a handful of sight words and communicating with us as best as she could. We practiced by writing words on her Magna Doodle:

C-A-T

"Meeeow." She couldn't say "cat" yet but we knew what she meant.

D-O-G

"Rffff." A bark.

P-I-G

"Doh, doh, doh." Her approximation of an oink.

She was obviously smart and she knew what she wanted to say. She tried to communicate with us, but we only understood her about ten percent of the time. Mostly she babbled to herself or her toys. Every so often, though, she would ask for something and we'd have no idea what she wanted. I remember one evening in particular when she walked in our living room and announced:

"Awaem oobie ees."

"What's that honey?" Julia asked.

"Awaem oobie ees."

"I have no idea," I said.

She made the sign for eat, putting her hand up to her mouth.

"Awaem oobie ees."

"Eat," Julia said. "Eat what?"

"Oobie."

"Oobie?" I asked.

"No," Anna replied. Her "no" was unmistakable. "No oobie, oobie."

Anna folded her arms in frustration. It was hard not to laugh at the gesture, but at the same time I felt so bad for her.

"It's something she wants to eat." Julia said.

Anna smiled and nodded. "Oobie."

"So it's food, two syllables?"

"Great," I said. "We're playing charades with a two year old."

"You're not helping.

"Sorry."

Anna put her hands on her hips. "Oobie ees." The hands on the hips were even cuter than the folded arms, but we kept our laughs to ourselves.

"Oo - bie ees?" Julia sounded out the words, grasping at each syllable as it passed over her lips.

I joined her. "Oo - bie ees."

Over and over we both said it. "Oo . . . bie . . . ees." Then it hit me.

"Cookie please?"

Anna smiled and nodded again. "Oobie ees." She sounded so happy.

Julia got up and got Anna the cookie while I smiled back at Anna. I was her hero for the moment, but before long I'd be that stupid grown-up who couldn't understand her.

It frustrated Julia and I as much as it frustrated Anna. We knew she was smart, we knew she understood us, yet she just wasn't able to say what she wanted to say.

Now this may sound strange, but we were fortunate that Anna had been born with a cleft lip. We took her to Doernbecher Children's Hospital in Portland for her surgery at four months old and returned annually for visits with the various members of their Cleft Team. Up to this point, we hadn't seen their Speech Language Pathologist, but given our concerns we made an appointment.

The SLP saw Anna twice—in April and then October of 2008. The diagnosis? Childhood Apraxia of Speech. The recommended treatment? Speech therapy, twice a week.

She began therapy right after her third birthday. When she started, she was all but unintelligible, but within the first year she made tremendous strides. By the time she turned four we could understand about 75% of what she said and total strangers got about half. She's progressed even farther since then, and though we still don't understand her all the time she is mostly understandable, even to strangers. She started kindergarten in September and has transitioned into a public school environment with no difficulties.

And now we want to give back, so we are participating in our first Apraxia walk in Salem, Oregon, this Saturday. Marcie Phillips organized the walk in honor of her three-year-old daughter, Addison, who is the same age Anna was when she began her therapy. We hope that our participation will help her and so many other kids facing the same struggle Anna has faced every day for the last few years: The struggle to be understood.

Every child deserves a voice.


Biography: David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. He is a Contributing Editor at About This Particular Macintosh and a Guest Contributor at MyEugene. His writing has been (or will be) featured such diverse publications as Chicken Soup for the Soul, Errant Parent, and Catholic Digest. He is a stay-at-home dad and blogs about parenting and life at Fatherhood Etc (http://www.fatherhoodetc.com/). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.

Links:
David Ozab: Writer http://www.davidozab.com/ Salem, Oregon
Apraxia Walk: http://www.apraxia-kids.org/salemwalk/davidozab

Walking for Apraxia & Learning that THIS is OUR thing

By Kari Weed (SLP & mom of daughter with apraxia)

We had the walk last Sunday and it went unbelievably well! The day started out a little crazy. We woke up to downpours and threats of thunder and lightning. Bill and I decided we needed to change the park that we were originally planning on having the walk in, to a park with a shelter. We made some phone calls and then it went much better. The weather was okay, we had a huge turnout and as of date we have raised almost $10,000.00! My mom flew up for the walk, both of Bill's parents were there and his brother and sister. We had cousins, aunts and Lucy's Godmother and friends attend and were all decked out in our "I love Lucy" attire. It was wonderful! We felt so supported and I realized that there is a "village" that is cheering, supporting and loving Lucy! There were two experiences that day, that gave me goosebumps.


When I woke up that morning I was very proud of the money we had raised but felt that I wasn't sure if I would do it again next year. I don't like asking people for money, nowaday there are walks for everything and it took a lot of my time. But, then these experiences happened:

Experience #1

There was a 19 year old girl at the walk named Elizabeth. Elizabeth was at the walk with her mom and had joined a local team with out even knowing the kids. Elizabeth is 19, attending UW and has apraxia! She has been in therapy since she was 3, but did not get a diagnosis until she was in 2nd grade. Elizabeth's mom stated that she has been waiting for the northwest to finally recognize apraxia and they were so thankful to be there. I talked to Elizabeth and was intrigued by the way she talked. Her speech was in her throat, kind of like glottal sounds. It was different, but not too different. I found myself listening to her and praying that Lucy will talk that well someday! Her mom was so thankful and Elizabeth was very proud. She knew how hard she had worked and this group of people are the only ones who would understand that!

Experience #2

A dad walked up to me after the walk and asked if I was Kari Weed? I said "yes" and he said, "Thank you for organizing this walk, for the first time ever, I heard other children who speak like my son. Thank you." I had tears in my eyes by the time we were done talking.

Now we will be organizing this walk every year! After the walk was done and we cleaned up, some of our family came back to our house. We toasted with champagne, ate chicken wings and then crashed for a great nap! After nap time we again met with family and had a celebratory dinner. It was a wonderful day!

I have learned that yes there are walks for everything, but this is our thing. These parents and kids need a place to see that other families are dealing with the exact same issues. Our kids were celebrated that day. Our kids who get the dirty looks in restaurants when they scream a lot because they cannot talk; our kids who we all fear will never speak; our kids who we love so much and we would do anything to give them a voice. Yes, we will be planning this walk again next year because this is our thing.

Thank you everyone who supported us!

[Special Note: CASANA thanks the volunteer efforts of Kari Weed and all the Walk for Apraxia volunteers who dedicate their time to bring awareness to their communities, and so much more.  At the Walk for Apraxia you are among "your people", those who understand just what you are going through and share the struggle and the hope.  The Walk for Apraxia also raises important funding for programs and research.]