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

Is Your Nonverbal Child Safe on the School Bus?

by Sharon Gretz, M.Ed.

[April 14, 2013:  Unfortunately, it keeps occurring.  Today we learn of 3 year old Elliott from Minnesota, who has childhood apraxia of speech, and never made it to school.  His mom thought he was playing and learning but he never made it and when he did not arrive at home on the bus and she called the school, the school said he had not been there. He was found 4 hours later still strapped in the bus in the bus terminal.  We are so grateful that Elliott is safe. Please read the article below and consider what you can do for your child or in your school district to make sure this doesn't happen!]

Two weeks ago we learned of a very disturbing story via the internet about a four year old girl with childhood apraxia of speech who was left unattended and forgotten on her school bus for over three hours. Little blond Ava was unable to yell out for help. Despite school district bus safety policies and procedures, the bus driver allegedly failed to do the seat by seat check that would have located Ava in the rear of the bus. An investigation ensued and shortly thereafter the bus driver resigned.

Ava’s family would like the Apraxia-KIDS community to understand how important it is to ask questions about your school’s bus safety procedures and to ask for a written copy. No one thinks that this can happen to their child, however, on the CASANA facebook page a number of parents are reporting similar stories about their child being placed in unsafe situations. For example, one boy was driven past his bus stop but could not tell the bus driver and was taken back to the school before he was noticed. Another child was crying on his bus but since the school bus driver did not understand his communication, no one knew why or what had happened. And tragically, a similar story occurred a decade ago to another little boy who was left on the bus in the bus garage for hours. On a brighter note, parents on our Facebook page also discussed safety procedures that are in place for their child who is nonverbal or limited verbal.

So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?

1. Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.
2. Inquire about whether your child’s bus driver has had special needs training. Arrange a meeting between school administration and your child’s bus driver to discuss your son or daughter’s communication needs.
3. Include travel safety and transportation details as part of your child’s I.E.P. Transportation is considered a “related service” and so specific transportation details can and should be included when the IEP team has agreed to include transportation for your child. A transportation plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.
4. Communication goals at school and at home should include self protection and self identification goals. Children with communication challenges need a way or need practice with skills such as calling for help (“Help Me”); how to gain someone’s attention (“Hey you!” “Wait!”). These phrases can be incorporated into speech targets or augmentative communication.

Having a child left alone for hours on a bus is easily every parent’s nightmare but is particularly disturbing if the parent is already concerned about a child’s ability to speak out. Careful planning and team work are essential to assure the protection of all, but most of all for the child. 

If you are a parent, do not let your concerns and worries be pushed aside. If you are an educator, be an advocate to make sure that children with no or little speech are kept safe!  For a guide designed for both parents and educators, please read An Overview of Special Education Transportation:A Primer for Parents and Educators.

Emilee's Journey - Never Give Up Hope

[A letter from Emilee's parents and one that brought tears to our eyes!]

Through the years we have enjoyed reading the success stories of fellow CASANA families. At the risk of bragging (Why not? We’re proud parents. That’s our job!), we would like to share our own story about our daughter, Emilee…

In 1998 at age 3, Emilee was first diagnosed with Apraxia. In the fall of 2005 at age 11, we watched with great anxiety as Emilee descended into the jungle of the middle school. Her learning differences, the academics, social issues, and even being able to open her locker, were all things that kept us up at night wondering how she was ever going to survive the fall of 6th grade, let alone the whole middle school experience.

Well, through more hard work than we could have ever imagined, along with the help of some truly wonderful teachers, aids, her family, and a great (small) group of friends, not only did she survive, she THRIVED. At her 8th grade “graduation” last month, we learned that Emilee was one of only 15 students in a class of 168 to earn the President's Award for Educational Excellence for maintaining at least an “A-“ average in every subject for the entire 3 years of middle school. In addition, she was one of 4 girls nominated by her peers and teachers an award, which is given each year to the outstanding boy and girl in the 8th grade. While she was certainly not one of the more “popular” students, her peers and teachers really admired her incredible work ethic and kindness to others. Needless to say, we could not be more proud of her.

For ninth grade, Emilee will be headed to a small private school just outside of Boston. While they do not offer “services” per se, they specialize in a “multiple intelligences” approach to teaching with small class sizes and a learning center to help guide the students along. It looks like it is going to be a great fit and Emilee is very excited.

Our message to those just starting down the path with a child with CAS would be to never give up hope. While this difficult journey to “Holland” (http://www.our-kids.org/Archives/Holland.html) is far from over, there are wonderful stops to enjoy along the way. You just have to watch for them, because you never know when or where they will pop up. Emilee never ceases to amaze us: from speaking when it was unclear how well she would ever speak, to riding a bike when it looked like a lost cause, to thriving in middle school, when we were worried if she would ever survive it. We are looking forward to seeing what the next four years of the journey will bring.

The Roller Coaster Ride That Is Childhood Apraxia of Speech

[by Jill, as part of CASANA'S Parent Scholarship application for the 2009 National Conference on Childhood Apraxia of Speech Conference]

Before my son was born, I was an enthusiastic middle school teacher in a tough part of Chicago. I was dedicated to struggling readers, writers, and mathematicians. But I drew the line at "special education." That wasn't my territory, not because I didn't care, but because I didn't know how to really participate. Back then, special education and general education were two very separate worlds.

Then I had my son and slowly over time, my world view changed both professionally and most dramatically, personally. Evan was perfect and beautiful and filled my heart with indescribable joy. I never dreamt that he would encounter challenges beyond the normal life experiences. I was a first-time mom, living in a rural area, with no extended family to "hang out" with. As I took my little baby in for his well-child visits, I would look at the poster on the wall of the exam room. It outlined language development for the typical child, with all the important milestones. I noticed that Evan was not doing most of the things he was supposed to be doing. During his nine-month checkup, I expressed my concerns to his pediatrician. He said, "Let's wait and see. Boys tend to lag behind girls in development." Everyone else echoed that same feeling, some people even mentioned how Einstein didn't talk until he was four. Looking back, his minimal vocalizations, lack of tongue movement, etc. were so obviously different than the norm. I regret that no one ever seemed alarmed, not that I feel that intervention at this point would have made any difference.

At each doctor visit thereafter, I expressed my concern about his language development and how it was not at all comparable with what was listed on the chart. Finally, at 18 months, the pediatrician recommended that I contact the local Birth - 3 program for an evaluation. The results of the evaluation were quite a shock. I thought he had delays in language development, but in fact, their results indicated that he was delayed in 4 out of 5 categories! Hearing these results was the beginning of a long roller coaster ride of emotions and advocacy that continues today as my son progresses through elementary school.

Progress in speech development has been painstakingly slow. This slow progress has me on a mission to find out how I can help my son. At first I thought he was just slow in learning to talk. A gap began to grow between his expressive and receptive language. Eventually, he was diagnosed with Childhood Apraxia of Speech. As we progressed through therapy and Early Childhood programs, I learned that I had to be the "case manager" for my child. This affects my life in many ways: I invest a lot of time in searching for appropriate services, making phone calls, driving to therapy appointments, meeting with school personnel, and educating myself and others on this mysterious condition known as apraxia.

Professionally I have, of course, become more interested in special education. I'm trying to figure out this inclusion thing - how to make it work for everyone (not an easy task). I also got involved in an interdisciplinary leadership training program that focuses on children with developmental disabilities and their families. This has, among other things, allowed me to attend national advocacy conferences.

Personally, I have become a parent advocate. I am proactive in educating the community about apraxia. I spent man hours in my son's classroom, helping his classmates understand why it is that my son has difficulty talking. At first they would say to me, "Evan can't talk." I would respond, "No, Evan can talk, it's just harder for him." I was glad I was able to be there to discourage that perception of him. I never wanted Evan to hear someone say that he can't talk.

As a teacher, I am now a big believer in the potential of inclusive education. While in kindergarten, my son's language grew more than ever before. Being around same-age peers that not only model language, but also engage Evan in academics and social activities is invaluable. Our school is somewhat unique in that it is very multicultural. When talking about diversity, most people talk about race, culture, language, and religion. We often neglect to include the abundant diversity in ability. I know that Evan's classmates have benefited from his presence as I've been fortunate to spend a lot of time with his classmates and their parents. Educators need to take on the responsibility of providing children with the opportunity to accept and celebrate the many differences in our society. We adults need to nurture and value the compassion that exists in young children. Wouldn't our world be an amazing place if we valued compassion as much as we do competition?

How does Childhood Apraxia of Speech affect my son? I'm not really sure. At this point, he can not express to me what is in his heart. I don't really, really know how he sees himself and I can't infer what his self-concept is. I don't know his own unique perspective on the world. He does know that he is "different" and that few people understand what he says. Right now, his social nature is an asset as he is persistent in forming friendships with other children. He's also a relatively happy child and doesn't get explosive in his frustration. He finds many ways to communicate, using gestures and words. I do think that his challenges with apraxia have allowed him to develop an incredibly empathetic spirit. When he sees a child cry, he puts his arm around that child. In silent gestures, he communicates that he cares and understands.

How does Childhood Apraxia of Speech affect me? Personally, I'm still riding an emotional roller coaster. I thought by now I would be more "together", that I wouldn't get sad at unexpected times. As I write this essay, I get tearful reflecting on the fact that I don't know anything about the inner life of my child. I get angry that he has such a huge challenge that affects just about every aspect of his life. I get frustrated that I can't ever do enough to help him or that I can't make it "go away." I get stressed over the behavioral challenges that arise. But I also get energized when Evan makes gains in the words he says. I celebrate even the littlest things that other parents take for granted. But mostly, when I tuck my son into bed every night, my heart fills with a feeling of love that I never knew before he came into my world.

With Apraxia There Are No Magic Bullets; But Are Unexpected Benefits

[by Michele S., as part of CASANA's parent scholarship application for the 2009 National Conference on Childhood Apraxia of Speech]

Childhood Apraxia of Speech affects our six-year-old daughter’s life every minute of every day. She is the sweetest little girl who loves and wants to get to know everyone she meets. The way she expresses herself draws some to her and scares others away. Some people are just plain confused. Anna has not been deterred by negative reactions in the past, but has recently become more concerned with how others feel. Even in an academic setting, there are many who assume that the inability to communicate freely or “on demand” automatically means that there is a cognitive issue.

School is a continuous battle for us. There is no ideal placement for a child who needs to be among typically developing peers, but has language delays that are seen in many subject areas. I would often ask myself if money were not an issue would everything be better? Of course, I immediately think! However, putting a child with Childhood Apraxia of Speech in a private school, when her siblings are all in public school seems like overkill. After all, these children are very capable of functioning in society if proper supports are available. Anna needs to be with good language role models and really enjoys their company. It would be detrimental to put her in another type of setting, which is often the case. This has unfortunately caused animosity between the school system and our family.

Speech therapy is another area of concern. We went for years without a (speech) diagnosis and no proper therapy. Some summers, there was no therapy at all. Very little progress was made and this preoccupied the entire family. We finally found someone qualified to evaluate, diagnose and treat our little angel. She has made so much progress since then and we have learned so much! It is still a battle to get the understanding and support of her school speech therapist, but we will not give up!

As a parent of a child with Childhood Apraxia of Speech, I spend a tremendous amount of time learning about the disorder, the therapy and treatments, and more about my child in general. This is absolutely a labor of love! I enjoy the learning, the insights and new perspectives of the professionals and meeting the other parents of children with CAS. We are a small, but passionate group with so much to offer.

There are so many unexpected benefits Childhood Apraxia of Speech has brought to our family. Anna’s big sister is 8 years old, has the patience of a saint and is a natural speech/language pathologist! She frequently role models and participates in activities to encourage Anna which is extremely helpful to us all! It is amazing to see such a young girl in such a mature role. We have incorporated the use of sign language, which has helped strengthen this relationship and helped big sister with her own expressive/receptive language disorder.

Anna has a younger brother with suspected Childhood Apraxia of Speech. The Early Intervention staff does not see the signs that we see. We now know what to look for and have had to advocate very hard for needed services. Childhood Apraxia of Speech is difficult to describe and there are not enough trained professionals to help parents identify it early on. Instead of being fearful or discouraged, we are now very encouraged by all the available information.

Our daily way of communicating with the 3 youngest children has changed into a way of life instead of just weekly therapy. We do not sit on the sidelines and leave it all up to the therapist. We try to always be active partners; it truly has become a lifestyle change. Signing, modeling and increased wait time has not only benefited my children, but also the class I teach and many other children we see on a weekly basis. I am always impressed with the enthusiastic curiosity of the children and adults who are near or with us. Their attitude toward communication seems to be better because of our example.

Of course there are the moments when all the time spent going to therapy, conferences, and work on sound productions do not seem to yield the results we all want. But then something wonderful will happen…Anna will spontaneously count to 10 when playing Hide and Seek! Saying every number (except 7, she always skips 7!) clear as can be! I wish I had the video camera all the time! We have all learned to appreciate the gift of communication more than we ever thought possible.

Financially, Childhood Apraxia of Speech takes its toll because of the time and expense of therapy, the travel, and the emotional investment put into this one child, sometimes at the expense of the others. It can put a tremendous burden on the entire family if not monitored every now and then. The guilt of not doing enough for some and too much for others is something every family must face, but the overwhelming importance of a child being able to effectively and consistently communicate their needs is always at the top of the list in our house.

There is no magic bullet with Childhood Apraxia of Speech and no overnight successes and we know this. However, Childhood Apraxia of Speech has brought us closer together as a family since there is always so much to tell and we celebrate every success!