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 the Research Says: The Importance of Production Frequency in Therapy for Children with Apraxia of Speech

The American Journal of Speech-Language Pathology recently published an article titled, “The Importance of Production Frequency in Therapy for Children with Apraxia of Speech (CAS).” The research was conducted by Denice Edeal and Christina Gildersleeve-Neumann from Portland State University. Their research question was to determine whether or not more practice of speech targets would lead to better performance by children with CAS within a speech therapy session and if more practice would lead to better “generalization” (increased performance on words that were not involved in the child’s training).

Because the hallmark feature of CAS is faulty speech motor planning and programming, it is theorized that using variables or principles from the professional literature on other types of motor learning may be advantageous in the treatment for CAS. Clinical practice as well as a growing body of research seems to bear out those ideas. Speech-language pathologists (SLPs) who are successful in treatment for children with apraxia often state that these children, in particular, need more INTENSIVE speech therapy. In this instance, intensive refers to the degree of practice the child receives within the individual speech therapy session. In citing leading researchers on motor learning, the author’s write, “Schmidt and Lee propose amount of practice is a key variable in motor learning. They suggest that the more practice opportunities an individual has, the better the individual’s performance of a motor task will be, which in turn lead to greater learning of these motor tasks.” Overall, more productions of speech targets by the child equals a greater degree of intensity.

In addition to considering the question of intensity of speech practice opportunities, the researchers decided to use an “integral stimulation” therapy method that is consistent with the Schmidt and Lee theories and the principles of motor learning. Dynamic Temporal and Tactile Cueing (DTTC) is a modification of the integral stimulation method used in the treatment of adult apraxia of speech. DTTC has been adapted for use with children, specifically children with a diagnosis of apraxia of speech. Multisensory cueing (visual, verbal, tactile, auditory, etc.) and other strategies such as a slowed rate of production are used within a hierarchical framework in order to target syllables, words or phrases, depending on the child’s current level of functioning. An SLP can move up or down the hierarchy depending on the child’s “real time” level of performance. In Edeal & Gildersleeve-Neuman’s research, they created an experiment in which two children with apraxia each received two conditions of practice in each session. One condition was called “moderate frequency” in which, through the DTTC therapy approach, 30 to 40 speech productions were elicited from the child. The other condition, using the same DTTC method of therapy, was called “high frequency” in which 100 to 150 speech targets were elicited during that segment. In the course of a session, each child received 15 minutes of moderate frequency and 15 minutes of high frequency practice. Different types of speech targets were used in each condition so that the effect of each condition could be evaluated.

Results

Regarding the overall therapy approach, the researchers found that an integral stimulation approach to speech therapy (DTTC), which incorporates principles of motor learning, benefitted both children. One child’s consonant accuracy rose nearly 50 percent in 11 weeks. The other child’s intelligibility rose 11 percent in five weeks.

Regarding the moderate versus high frequency condition of practice, the researchers found that both children benefitted more from the high frequency practice than they did the moderate frequency practice. The speech targets treated in the high frequency condition led to increased in-session accuracy as well as greater generalization to untrained targets. In addition to the improved in-session accuracy and generalization with higher frequency practice, the authors point out that this same practice demonstrated the accuracy could be achieved in fewer sessions. Furthermore, targets that received treatment in the high frequency condition were more stable and accurate from session to session compared to speech targets trained with the moderate frequency condition.

The Bottom Line

The results reported in the Edeal and Gildersleeve-Neumann study are very encouraging yet have limitations. First of all, the number of reported subjects was very small. Secondly, subjects had some variability in the length of their treatment. Issues such as the motivation of the child may also enter into the mix. However, on the positive end, this report confirms other studies in which multi-sensory therapies such as DTTC, which incorporate the principles of motor learning, are effective methods to treat a difficult disorder like CAS. Keep in mind to aim for the following in speech therapy sessions:

• A high degree of direct practice of speech targets. A child should have dozens and dozens of speech productions during each therapy session. A child that is saying or attempting little in a speech therapy session will not likely make progress like a child who is able to have a high degree of practice opportunities.
  
  
• Therapy approaches that incorporate principles of motor learning may be key to progress for children with a primary diagnosis of apraxia of speech.
  
  
• It is worth mentioning that children with apraxia of speech should work on actual speech during speech therapy. This is consistent with motor learning theory which suggests that to improve performance for a particular task, one should practice that specific task.

Source: Edeal, DM and Gildersleeve-Neumann, CE. The Importance of Production Frequency in Speech Therapy for Childhood Apraxia of Speech. American Journal of Speech-Language Pathology. May 2011, Vol. 20, 95 – 110.

© 2011 by the Childhood Apraxia of Speech Association of North America (CASANA). All Rights Reserved.

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.

Will "Autistic" Like Symptoms Go Away Once A Child's Speech Improves?

Response from Dr. Kathy Jakielski:
"Autism and Childhood Apraxia of Speech are different disorders, although some children may have both. For this question it would be so dependent on which "autistic-like symptoms" are present. For example, if a child clearly wants/enjoys interpersonal interaction but is reticent to interact because of a lack of success getting others to understand due to a speech motor disorder like CAS, that is one thing. In that instance, it is likely that they will interact more successfully and willingly as intelligibility improves. However, if a child actually does have autism or significant "autistic-like symptoms" and apraxia, then EACH part of the child's diagnosis truly needs worked on it and of itself. There is no guarantee that symptoms of autism will be eliminated solely with improved speech intelligibility. It is likely therapy will also involve more than speech therapy and work on things such as social relatedness, language, sensory defensiveness, possibly behavior, etc."