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. 

An Open Letter

By David Ozab

To the anonymous donor who gave $60 to Team Anna for our 2012 Walk for Children with Apraxia of Speech:
 
I want to say "thank you." I know the chances of you reading this post are very small—perhaps infinitesimal—but on the slight chance you see a link to this post, I want to tell you a bit about the girl you're supporting and the many kids like her.
 
Anna is an amazing girl. I know I'm biased since I'm her dad, but she really is. She is six-and-a-half and she just started first grade: she loves to read, to swim, and to perform for anyone who'll watch, or when she's alone in front of a mirror. She wants to be an actress and I think she'll be a good one: we're looking into classes for next spring.
 
But to act she has to be understood and that's a challenge for her. At two-and-a-half years old she was diagnosed with Childhood Apraxia of Speech. CAS is a motor-speech disorder where her brain knows what to say but the mouth can't keep up. It's a spectrum disorder: some kids don't talk at all while others talk non-stop but can't be understood. Anna was in the latter category: she still is, but thanks to almost four years of intensive speech therapy, we now understand her most of the time. She's not done yet, but she's come a long way.
 
Speech therapy has made a huge difference in her life and we are grateful to all the speech language pathologists (SLPs) she has worked with over the last few years. SLPs undergo intensive training in order to work with children with CAS, and CASANA helps fund some of that training. They also fund research, iPad app development, and outreach to over 350,000 people each year through Apraxa-KIDS.com, the Apraxia-KIDS blog, and social media sites like Facebook and Twitter. None of this would be possible without donations like yours.
 
Every year, kids with Apraxia and their families participate in walks across the country to raise money and awareness. Last year, we walked with a small group of families in Salem, Oregon, and despite registering just before the deadline we still raised $360. This year, with more time to plan, we hoped to do better.
 
We did. My wife's employer gave us $1000 (meeting our original goal) in early-September. Friends and family contributed too. And Anna decided to do her part. She saved change from household chores in a special Apraxia piggybank, set up a lemonade stand during a church garage sale, and contributed half of the money she made selling her pre-school aged toys in the same sale. She raised $50 all by herself, which we matched to bring her total contribution to $100.
 
After the sale was over, we submitted her contributions to our fundraising page, leaving us only $60 short of out new goal of $1350. I posted the story of her lemonade stand on both Facebook and Twitter and with less than two weeks to go we hit our goal.
 
Thanks to you, anonymous donor.
 
It's been said by many people that the greatest testimony to a person's character is what he or she does when no one is looking. This contribution, however big or small it may seem to you, is a great testament to your character. You didn't give it in hope of recognition. You knew that no one would ever know your identity and yet you gave anyway.
 
We will never know your name, but we will always be grateful.
 
Sincerely,
 
David, Julia, and Anna Ozab.

______________________________________________________________________________________________
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.

For more information on David Ozab, visit his website at http://www.davidozab.com/ 

A Bit of an Accent

By David Ozab

“Will my child be accepted?” It’s a question every parent asks, particularly parents of kids with Apraxia of Speech. I’ve asked that question myself many times. My daughter Anna has always made friends easily, but as other children her age became more verbal, I began to notice a barrier forming between her and them. It’s been two years, but this incident still sticks with me. She had just turned four, and it was the first time she was excluded because of her Apraxia.

We were at our local mall's playland that day—one of Anna’s favorite places to play. She likes the waterfall themed slide, the hollow log topped with a lounging bear, and the big red canoe. I like that there's only one way in or out so it's easy to keep an eye on her.

I sat by the entrance as I always do. I had my notebook at hand to catch any cute or funny things Anna might say. She ran around, slid down the slide, and made friends with all the kids—it was spring break so there were lots of kids to play with. She approached an older girl who was sitting on the bear and asked the same question she always does:

"Do you want to play with me?"  The girl didn't understand, so I repeated it.

"She got a bit of an accent," the girl replied.

"Yeah," I said. "She's in speech therapy."

The girl shrugged her shoulders, slid off the bear, and ran over to the slide. Anna followed, of course, like she always does when she wants to be friends.

A few minutes later, I saw Anna talking to the older girl, who sat by the slide with two other girls closer to Anna's age. The girls struggled to understand Anna so I walked over and helped translate:

"She said 'My name is Anna, what's your name?’”

"I'm Whitney," the older girl said.

"Do you want to play with me?" Anna asked again. I repeated what Anna said so the girls would understand.

"This game's for three," Whitney said. "I'm the mommy cat, and they're the kittens."

I wasn't sure if the girls were excluding Anna on purpose, or if they’d created a three-person game, but I quickly thought of a way they could include her.

"Can't there be three kittens?" I asked. "Like the song?"  I sang a verse of The Three Little Kittens. Anna and the two younger girls smiled, but Whitney shook her head.

"This is a different game.” She got up and walked away. The two younger girls followed her. Anna started off too, but I called her over.

"Anna, they’ve already started their game."

She pouted. “But I want to play with them.”

"There are lots of kids here. Why don't you find another one to play with?”

I gave her a hug and sent her on her way. Within five minutes, she and another girl were running around the play area, sliding down the slide, and laughing. She was over the snub.

But me? Not so much. It's something I've worried about since she was first diagnosed with Apraxia. She's always made friends so easily, but as she grows older, will she be seen as different and shunned by some of the kids? Her speech is improving rapidly, but she may need years of therapy to be completely understandable and even then she may never lose her "accent."

How will she handle the rejection? How will I? How much do I shield her? How much do I let her experience so she can learn to take it and ultimately ignore it?

Those questions were on my mind the rest of the day, and they’ve nagged at me ever since. Every time she enters a new social situation, I always wonder if she’ll be singled out because of her speech.

Almost two years have passed since that day at the mall. She’s six now, and has just started the second semester of Kindergarten in our neighborhood public school. She still has trouble being understood at times, but she's had no trouble making friends. Her outgoing personality and our constant encouragement have made a big difference. So has her ongoing therapy. Other than her “accent,” her classmates see her as another girl in their class.

If you are a parent of a child about to enter school, and you're worried about how your child will fit in, I hope that I've eased your worries a little bit. Yes it can be difficult, but in my experience it's never as bad as we imagine it will be. Take advantage of all the support that's given to you, and then let your child have fun.

______________________________________________________________________

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 

Early Advocacy Made the Difference

By Sheri Larsen

As the mother of three young children, I figured I’d seen it all from ADHD, tonsillitis, surgeries, colds, and runny noses. I was wrong.

CJ was born on a crisp November day in 2003, two weeks earlier than expected, and with a true knot in his umbilical cord. He should not have survived.

Feeling tremendously blessed, we took CJ home and, for the next six months, went about the busy life of raising four children. The latter half of his first year was spent with picture books in his hands and puzzle pieces scattered on the floor. He was fanatical about pictures. So much so, that by twelve-months old he had mastered 60-piece puzzles with no aid at all, pointing out objects in the pictures. He figured out how to communicate his wants and needs. I used to joke, calling it our private language. He excelled in every area of growth, except for the normal sounds babies make.

His first birthday came and went, but did not take with it his inability to make sounds other than the grunts and groans we’d grown accustom to. With no improvement in articulating formidable sounds over the next months, I spoke to our pediatrician about my concerns. She set up an appointment for CJ, who was 22 months old at the time, to be evaluated by a speech therapist. Her trust in me as a parent would never be forgotten.

CJ was officially diagnosed with Apraxia of Speech.

Hearing CJ’s diagnosis being described as a neurological disorder could have crippled me. Instead, I collected research and questioned his two therapists on ways I could help him at home in addition to his therapy regiment. I searched magazines, the internet, and any other source to find pictures of everything under the sun. Shrinking the images and laminating them into a deck of cards made it easy to take to any ice rink or field my older kids were playing at. We would use car rides as therapy by flipping pictures to CJ and encouraging him to form the sounds. My older children helped, too. Slowly we saw improvement.

As a family, we dedicated ourselves to learning sign language and used amazing DVDs to do so. Once CJ was given his “Picture” book, he could hand us little images of his wants and needs. It was then that I finally understood what he had been telling me all along.

CJ had lots to say. He only needed help finding his voice.

My greatest joy was the first time I heard him say, “Mama.”

The next three years were spent in therapy, where CJ and his therapists developed a fond relationship, one that would unexpectedly follow him into elementary school. There, he entered special services for speech therapy. His original therapist took a job at the school and could keep an eye on CJ, one of her star little guys. We were so blessed.

But soon, it was evident that CJ had met and even surpassed the official state benchmarks to receive services any longer. It was then that an image of a chubby 22-month-old sitting at a lone table in his therapy room and swooning over the mini M&Ms, which had become his expected reward during speech, wafted across my mind. I knew how hard he had worked. I had educated myself enough about Apraxia to know that it could continue to affect him as his vocabulary and the demands on his system increased, especially around third and sixth grades. I could not let his hard work go to waste.

Through my advocacy, CJ was allowed to remain in speech therapy for the remainder of kindergarten, first grade, and the beginning of second grade. He is still in the second grade and was recently discharged from the program; however, I asked for a written agreement, stating that CJ will be allowed back into the program, with ease, if his speech skills backslide when entering third grade. Given that his original therapist is at the school, I am confident she, as his advocate, will insure CJ’s continued care.

The most important message I have through CJ’s story is parental advocacy. There is nothing wrong with standing up for your child’s well-being, as long as it is delivered in a positive manner. Parents can be their child’s voice, until he or she finds their own.

Every child deserves a voice.

More about Sheri Larsen



Sheri Larsen is a published freelance and short story writer, and KidLit author. Her current YA novel is with literary agents, and she’s preparing to sub one of her picture books to agents. Her website, Writers’ Ally (http://writersally.blogspot.com), is where she explores writing, children’s literature, and motherhood. She lives in Maine with her husband and four children.

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.]

Triathlete Luke Farrell Takes on World and Speech Dyspraxia

Written by: Roy Elmer, Luke’s Grandfather

Please Note: Terminology used throughout this story, such as Speech Dyspraxia, is the same as Childhood Apraxia of Speech.

Triathlete, Luke Farrell, has had Speech Dyspraxia, SLI 5-6, since birth. Now 18, Luke is in his final year of school at Immanuel Lutheran College at Buderim on the Sunshine Coast. He also just received advice of another selection in the Australian team to compete at the World Junior Championships in Beijing, China in September 2011. He is widely regarded as an outstanding young man and a rising talent in the junior elite level Triathlon in Australia and internationally.

LUKE’S EARLY LIFE—A ROUGH RIDE.
At the age of four years, while living in Brisbane, Australia, Luke had not begun to speak and was diagnosed by a government department psychologist as having autism spectrum disorder. At this departmental officer’s direction, he was transferred from his local kindergarten to a “special” preschool, attended by children with serious disabilities. Luke was surrounded by youngsters with serious developmental and behavioral problems and had some disturbing experiences. These experiences created great angst for his parents regarding the short and long term effects. His parents made several approaches to the Education Department to sanction withdrawal or transfer, but nothing was achieved.

Once Luke reached primary school age, he was sent to a “special education unit” at the Mt. Gravatt East primary school in Brisbane. This brought new challenges for Luke, struggling to separate the teacher’s voice from other sounds in his surrounding environment and unable to comprehend the lessons. In attempt to cover this, he began to imitate other student’s reactions and behaviors, only to mask further the true nature of his problem. As time progressed, his family became aware that the only appropriate intervention he was receiving was one half hour every fortnight of speech therapy. His tuition time was shared with six other students and other lessons/services provided to Luke were of no benefit. His parents saw him being prepared solely for a life of limited expectations as a disabled person.

A GLIMMER OF LIGHT.
Luke’s first signs of an improved prognosis appeared only after he had the good fortune of being referred to Jane Remington-Gurney for speech therapy. Jane runs a company called “Options” Communication and Speech Therapy, operating at the cutting edge of the science of her profession. Upon the first meeting and subsequent consultation processes with Luke, Jane diagnosed Luke's condition as Verbal Dyspraxia, a disability presented as a speech language impairment, SLI 5-6, and a hearing and comprehension difficulty. Following Jane's diagnosis, Luke was referred to Dr. Ross, a specialist in Autism disorder and president of the Autism Association in Australia. At this consultation, Dr. Ross agreed with Jane’s diagnosis in which Autism was eliminated and Verbal Dyspraxia, SLI 5-6, was confirmed.

PATHWAY FORWARD.
Luke's parents were determined to give him, for the rest of his school life, the opportunity to keep in touch with his own peer group by finding and establishing his own level in his future. Their hopes were pinned on the private school sector, combined with continual monitoring and guidance from his speech therapist, Jane. The next step was to find a private school willing and able to accept the challenge of providing Luke a place in one of their classrooms as well as a meaningful education. Finding it proved to be very difficult as their search extended beyond Brisbane. It was not resolved until the principal at Immanuel Lutheran College, Buderim, called a meeting of the staff members who would be involved in delivering Luke’s education program. They accepted the challenge and for the first time Luke enrolled at Grade 3 to a normal classroom. The very next day the family relocated to the Sunshine Coast. This was an enormous dislocation for Luke’s parents who were faced with many challenges, including selling the family home and managing their Brisbane based business from 100 kilometers away.

Although it was understood that given the delayed start to education proper, Luke would have significant hurdles to overcome to graduate from high school. Guidelines were put in place to ensure minimum targets were achieved for Luke to have the ability to interact with other members of mainstream society, to have a positive self-image, and sufficient life skills to make his way in life. Happily, this target has been surpassed with already several bonus outcomes. Luke’s easy going nature attracted friendships essential to peer group acceptance. His shy but honest modesty following his successes with his sporting endeavors reflected credit on his school and firmed up his friendships, all of which are fertile ground for the formation of a healthy self-image and self-esteem.

SPORT—THE KEY TOWARDS NORMAL LIFE.
The role that Luke’s participation in sport has played in his progress towards a normal lifestyle is impossible to ignore. At the age of thirteen, after watching a televised triathlon event, Luke announced he was going to become a triathlete. Although he had never owned a bike or displayed any particular talent for running, he did not regard this as an obstacle. His parent’s only reaction was by providing encouragement, support and opportunity. That year, Luke entered the Mooloolaba Triathlon in the "come and try" series. This proved to be the most enjoyable experience in which he competed successfully. In the next four years, Luke’s progress displayed a rise through district, regional, and Queensland representative levels as he participated in state teams that won the Australian team’s championship, and then the honor of representing Australia in a triathlon. Luke appeared to make a quick and smooth transition from a “nobody” to “a big time somebody.” Nothing could be further from the truth.

In late 2008, Luke, who was only 15-years-old at the time, was producing impressive performances in the Gatorade age group events held in Queensland. As a result, he was contacted by the Triathlon Australia and with only one week’s notice to the first event, he was advised to compete in the South Australian, West Australian and ACT Triathlon State, under 19 age group, Sprint Championships. These races formed part of the selection trials for the Australian team to compete in the World Triathlon Sprint, under 19 age group, Championship. Luke finished first in Gleneg, South Australia; and second in both Rockingham, West Australia and Canberra. ACT. After returning home, Luke competed in the remaining events, winning the “Gatorade” series in his age group in Queensland, across six triathlons at different venues. These performances had been the reason for his gaining selection in the Australian team for his first time.

Following his results in special trials, he received advice from the Queensland Academy of Sport that he was an automatic selection in the Triathlon Queensland Junior Emerging Triathlon Squad (JETS). Shortly after, he also received advice from Triathlon Australia of his selection for their 2XU National Junior Development Camp. He was advised that his selection was based on his “Commitment, Attitude and Performance” and importantly, his “potential to become an elite athlete.” He would receive this invitation again in 2011.

In 2009, 16-year-old Luke was one of the youngest triathletes selected to represent Australia at his first ever World Junior, under 19 age group, Sprint Triathlon Championships on the Gold Coast. He finished in eleventh position in a field of 57, under 19 age group, competitors from around the world. After outstanding performances in 2010 state and national competitions and selection trials, he again achieved selection in the Australian Team for the 2010 World Junior Spring, under 19 age group, Triathlon Championships held in Budapest, Hungary. The domestic season finished in mid-March so Luke had only six months of training with no competition until the race itself in September. Despite these conditions, Luke finished in fourth place.

After resuming from his rest period after Budapest in late 2010, Luke competed and finished seventh place in his first elite Open Men’s triathlon event, the Queensland Triathlon Gatorade No. 1 race. From there he went on to achieve his third consecutive win, blitzing the field by a full two minutes, in the Queensland Triathlon “All Schools” 2010 championships. In 2011, he finished in second place at the Open Men’s event for the Gatorade No. 2 race at Robina on the Gold Coast, followed by a win in the Gatorade Bribie Island Junior, under 17 age group, Triathlon. Both proved to be just a warm-up for the Triathlon Australia, under 19 age group, championship held at Canberra in which he discovered his racing bike had a crack in its frame just before leaving. He still managed to finish second place at the 2011 Australian Championship event on a borrowed bike.

Over the next few months, Luke learned about the impact of illness on training and competition performance. He suffered a series of health challenges, including an ear infection, a virus and ultimately bronchial pneumonia, losing 5kg of body weight. Luke’s training load and competition schedule were reduced and he displayed great courage in persevering, especially with team events. Although the past few months have been a little quieter as a result of his ill-health, the exciting news is Luke’s selection again for the 2011 World Junior, under 19 age group, Triathlon Sprint Championship to be held in Beijing, China.

Luke’s support group is happy with his progress, despite the setback caused by his untimely illness. He is considered to be on track with his goal of life as a professional triathlete. After returning from a necessary rest period ordered by his coach, Luke entered the Hervey Bay “Olympic Distance” Triathlon to record a base time to qualify for future major events; Luke finished in fifth place in this Open Men’s competition. While there, Luke found himself competing against one of his idols, Courtney Atkinson. They talked after the event and instantly became friends. Today, their friendship continues by keeping in touch through Facebook. It is Luke’s sporting achievements that have opened doors to conversations like this, which were never dreamed of in those difficult early years.

TIME TO MAKE A DECISION ON A FUTURE LIFE.
After Luke finishes school in late October 2011, he will begin life as a semi-professional triathlete until he achieves his license as a professional. He will then be nearing the end of his third year of a four-year Operational and Strategic plan, put together by his family support group who were drawn together by Luke’s determination to succeed. He also aims to be a professional coach of these skills later in life, a remarkable ambition for a lad with Verbal Dyspraxia. Luke’s story reveals great strength of character, dedication and determination to succeed. His diagnosed medical condition is incurable, however Luke has used his sporting experience and successes to throw off its shackles and earn the admiration and respect of his peer group, both at school, in sport, and in the broader community. He has not cured himself of his condition, but has learned to “live with it.”

His appointment as captain of the Sunshine Coast Secondary schools regional team in 2011 indicates the respect he has earned from the regional team’s management. The team members and other competitors accept him into the peer group unconditionally and as a teenager living with Verbal Dyspraxia, Luke is immensely proud of his achievement in making his first public speech on accepting the trophy on behalf of his team.

In his short eighteen years to date, Luke Farrell has trodden over more obstacles, overcome more fears and moved further beyond his comfort zone than many people are asked to do in a lifetime. The simple act of mixing with his peers and fellow athletes who enjoy fluent communication skills has tapped his reserves of intestinal fortitude, and his peers’ lives have in turn been enriched as they have come to grips with communicating with Luke. Luke hopes his story, which basically comes down to accepting his situation, learning to cope with it as best he can, looking to his strengths, and getting on with life, will offer hope and support to individuals, parents or families facing similar challenges.

For more information go to Luke’s Website: http://www.lukefarrell.com.au/

E-mail: roy@lukefarrell.com.au

Truth or Misleading? “Children with Apraxia of Speech Make Very Slow Progress”

The Childhood Apraxia of Speech Association of North America (CASANA), along with members of its Professional Advisory Board, has engaged in discussion about the misleading impression that children with apraxia of speech make very slow progress in speech therapy. Some children are diagnosed with Childhood Apraxia of Speech (CAS) by speech-language pathologists who are using “slow progress” as the differential characteristic of the disorder. Is it true that children with CAS make very slow progress in therapy? Here is what we think:

• Children with apraxia of speech often make slower progress than children with other types of speech sound disorders. (Note: slower than other types of disorders; not slow in and of itself)
• Children suspected to have CAS but who make very rapid progress in speech therapy that generalizes easily to new contexts, both in and outside of the therapy room, most likely have a phonological disorder and NOT CAS..
• With appropriate goals, informed by detailed assessment – AND – appropriate, well executed speech therapy that incorporates principles of motor learning, children with apraxia of speech can be expected to make good, steady progress in therapy, especially those with age appropriate or near age appropriate cognitive and language skills.
• Both parents and SLPs should not blindly accept that, “progress will be or is slow because the child has apraxia.”

Discussion:

Speech progress may be very slow, even with appropriate planning and therapy, when other co-existing problems add to the challenges, including delayed cognition and/or receptive language, poor attention or behavior, and other significant speech diagnoses such as dysarthria. Additionally, children with CAS who are in poor health and not able to take full advantage of the learning and practice opportunities available to them, may demonstrate very slow progress in speech production skills.

With appropriate goals and intervention, parents of children with apraxia as the primary diagnosis should expect progress in their child’s use of intelligible words within a three-month period. (Children with apraxia plus other complex challenges likely will have more limited progress.)  If this progress does not occur for a child whose primary diagnosis is CAS, an SLP should consider the following questions:

• Is the diagnosis correct?
• Are the goals and stimuli appropriate?
• Are there additional diagnoses that should be considered, in addition to CAS?
• If there are other diagnoses, is one of them really the bigger challenge to the child’s speech production skills?
• Is the intensity of speech practice, both in therapy and at home, sufficient?
• Is the frequency of direct speech intervention sufficient?

Remember that although speech progress can be slower for children with apraxia than it is for children with other speech problems, there should be noticeable and ongoing progress in the child’s ability to independently produce intelligible words. While their words may not be “perfect”, one can observe increased movement toward intelligibility. Parents will want to be in contact with their SLP to discuss expectations and what modifications the SLP will make if progress is not being made.

What Causes Childhood Apraxia of Speech and Is It Preventable?

From CASANA

First, it is important for parents to understand that there is most likely nothing that you did to “cause” your child’s speech disability. It is not about how much you talked to your child or whether or not you had them in daycare, for example. Your child does not have apraxia because you separated from your spouse or because you moved to a new city. So while we know that parents have a strong role in healthy child development, unless there was abuse, neglect, or isolation, you are not responsible for causing your child’s speech disorder.

The current knowledge that we have about Childhood Apraxia of Speech (CAS) is this. CAS occurs in the following 3 conditions:

• Neurological impairment caused by infection, illness, or injury, before or after birth or a random abnormality or glitch in fetal development. This category includes children with positive findings on MRI’s of the brain.
• Complex Neurodevelopmental Disorders – We know that CAS can occur as a secondary characteristic of other conditions such as genetic, metabolic, and/or mitochondrial disorders. In this category would be Childhood Apraxia of Speech that occurs with Autism, Fragile X, Galactosemia, some forms of Epilepsy, and Chromosome translocations involving duplications and deletions.
• Idiopathic Speech Disorder (a disorder of “unknown” origin) – with this condition, we currently don’t know “why” the child may have CAS. Children do not have observable neurological abnormalities or easily observed neurodevelopmental conditions.

Parents often ask if their child may have apraxia due to medical complications during pregnancy or childbirth. There are currently no studies that suggest a direct relationship between complications of pregnancy or childbirth and a specific increase in risk for apraxia of speech. For example, an umbilical cord wrapped around the neck of a fetus could theoretically cut off oxygen supply and possibly lead to neurological injury, eventually resulting in a CAS diagnosis. However, such a condition could also NOT result in CAS or even neurological injury. Some children are born just fine even though there was some complication during pregnancy or birth. So, while it is possible that a complication could result in neurological damage that might contribute toward a motor speech disorder like CAS, research has not told us when or how this would occur.

Some speculate that some forms of CAS and other childhood conditions may be a result, in part, of environmental conditions such as exposure to pollutants and toxins before or after birth. Others speculate that nutritional deficits or malabsorbtions cause CAS. We do know that, generally, toxins and nutritional deficits do cause some developmental problems, but to date these theories, as they relate specifically to CAS, are only speculations.

That said, a child’s positive health would contribute to their ability to benefit from their learning exposures and from therapy designed to help them. A child who is healthy is more fully capable of taking advantage of opportunities to learn. Children who are sick frequently with ear and sinus infections, enlarged tonsils and adenoids, asthma, allergies or have sleep disturbances, poor diets, attention and behavioral difficulties are going to find it much more difficult to benefit from the help provided. Helping your child be healthy and thus more “present” to the learning opportunities around them is one way parents can help.

Most likely in the future we will learn that CAS is caused by multiple factors and conditions, not one. To the extent that research evidence becomes available that CAS is caused by some factor(s) that can be manipulated to reduce or eliminate it, will determine whether or not it is preventable. Until then, we do know that appropriate speech therapy provided frequently and in consideration of motor-speech treatment principles offers the single most important opportunity for children with CAS to improve their speech capacity. Children who are able to maintain optimum health will most likely directly benefit the most from appropriate help.

Apraxia………..

by Michelle Genser-Jones

The expressions in your face
Show the words you can not say
Not a fault, of yours nor I,
But of Apraxia,

Unknown to most….
It is not heard, nor seen,
But a Voice it takes

Scared parents…cry…worry
While surrounded by others…
Who just can’t understand

The fate, the destiny of their loved child
Seem unfounded through the endless wait…
With ears constantly ready for that first word
Joyful tears pour out when it’s finally heard

Words…movements… Sounds, may be found
Only to be lost once more,
And re-found at a later date
Dreams only to remain are those shared

Between child and parent
A bond always remains