Exploring New Treatment Methods for Childhood Apraxia of Speech

A study funded by CASANA was completed by Dr. Jonathan Preston, a researcher from Haskins Laboratories (www.haskins.yale.edu) and Southern Connecticut State University. The research involved using ultrasound (the same device used to obtain images of a fetus or heart) to provide a real-time visual display of the tongue. The ultrasound transducer is held under the chin, and the ultrasound images are then used to teach children how to move their tongue into different positions to produce certain speech movements. Speech-language pathologists can use this information to provide the child with cues about the tongue.

One advantage of using ultrasound biofeedback for children with persisting speech errors is that both the clinician and the child have more information about what the child is doing with the tongue when he or she speaks. Additionally, clinicians can provide more direct and explicit cues to the child, such as “move this part of your tongue up here,” and the child can readily see if the movement was produced properly.

Among the disadvantages of this approach are the cost of the equipment (the ultrasound probe costs about $5,500) and the need for clinicians to be trained in the approach.  Presently, only a few clinics in the country are using ultrasound biofeedback therapy. In general, children younger than 7-8 years are probably not good candidates for this type of therapy because it requires a great deal of focus and is not as “play-based” as some other therapy approaches.

The target group of children for this study was children who had speech errors that had not resolved by the age of 9 years.  Six children, ages 9-15, participated in the study for 18 therapy sessions. All children had been resistant to traditional treatment methods and were showing limited progress in their school-based speech therapy programs.  All of the participants in the study showed improvement in their speech sound accuracy on treated sounds, and all parents reported improved speech intelligibility.  Specifically, each child achieved 80% accuracy or higher on at least two treatment targets, and some children showed substantial generalization to sound patterns that were untreated.  Dr. Preston cautions that not all children necessarily respond equally well and that further research is needed. However, the use of ultrasound biofeedback therapy holds potential to become another tool in the toolbox for treatment of children with persistent speech errors.

 

Dr. Preston has recently applied for federal funding to continue to support this research.

 

[Note: CASANA research grants are made possible by funds generated by the Walk for Children with Apraxia]

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.

Interview with Dr. Aravind Namasivayam

CASANA has awarded an Apraxia Treatment Research Grant to Dr. Aravind Namasivayam of the Speech and Stuttering Institute in Toronto, Ontario, Canada for his proposal, “Exploring the Relationship Between Treatment Intensity and Treatment Outcomes for Children with Apraxia of Speech.” Other co-investigators on this grant include Ben Maasen, Ph.D. of the University of Groningen, Netherlands; Pascal van Lieshout, Ph.D. of the University of Toronto; and Margit Pukonen, M.H.Sc. of the Speech and Stuttering Institute.  We interviewed Dr. Namasivayam about the grant project and that interview is below.

CASANA:  Why do you feel this study is important?

Dr. Namasivayam: There are a number of factors that may contribute to treatment outcomes in children with Apraxia of Speech (CAS) ranging from frequency, intensity and type of practice sessions to amount of home practice, parental involvement/participation parental skill and treatment fidelity, yet there is little empirical data regarding how these factors actually contribute to treatment effectiveness. The present large scale multi-centre study is the first of its kind to investigate:
 a) the magnitude of treatment effects,
(b) the relationship between treatment intensity and outcome measures and
(c) to identify the key factors that contribute to treatment effectiveness of motor speech treatment for this population.

For example, at the present time we do not know if the intensity of treatment (1x versus 2x a week) plays a role in determining the magnitude of treatment effects when controlled for treatment duration (10 weeks), or what are the effects of parental training and home practice on speech intelligibility and functional communication. Having this information will help us refine and guide clinical practice (e.g. service delivery models for this population).

CASANA:  In what ways do you anticipate the study being most successful?

Dr. Namasivayam:  We feel that the study will contribute significantly to the understanding of how the service delivery models (e.g. treatment intensity) affect treatment outcomes in CAS. This information could then be used to justify treatment schedule changes and funding allocation for treatment of this population. Also, findings of the study will yield important information relating to the impact of parental training and home practice on treatment success. This information can be discussed with parents to motivate and increase their participation in the therapy process. Finally, information on magnitude of treatment effects for outcome measures related to speech intelligibility and functional communication is limited for this population. Knowing magnitude of treatment effects is important for two reasons: (a) it can be used to set appropriate levels of clinician and parental expectations prior to treatment, and (b) it allows for planning of future studies in terms of study design and sample size.

CASANA:  What are the biggest challenges you will face with this study?

Dr. Namasivayam:  The biggest challenge as with any large scale multi-centre study is to limit inter-clinician and inter-clinic variability and make treatment replicable. We have taken a number of steps to ensure both quality and quantity of treatment is delivered as intended. For example, all clinicians prior to participating in the study were given a structured 30 page manual, had to attend 2 rigorous multi-day workshops on assessment and treatment of children with motor speech disorders, had to complete 2 online video based assignments, and pilot the treatment protocol as a case study in their own clinics. These procedures were developed to allow us to maintain a high degree of treatment fidelity across clinicians and clinics. Additional challenges include getting ethics approvals from a large number of centers and hospitals within a short period of time, and finding sufficient assistance and financial resources to meet project timelines.

CASANA:  When this study is successfully completed, what future research do you expect?

Dr. Namasivayam:  We hope to continue several lines of research based on the factors that may contribute to treatment outcomes in children. For example, we would like to investigate how a clinician’s skill level and training may affect treatment outcomes or how a clinician’s accuracy, timing, and type of cueing in treatment alters treatment outcomes for CAS. These are critical follow-up questions to this project.

CASANA:  What are your thoughts on CASANA's Apraxia Treatment Grant Program?

Dr. Namasivayam:  Through it's research program, CASANA is fostering exciting research that will help us develop a deeper understanding of CAS and how to treat the disorder more effectively. Our research team would like to extend our sincere thanks to CASANA for providing us with the opportunity to contribute to this cause.

It is expected that about 200 children with motor speech issues will be participating in this study, with a significant portion of them displaying signs and symptoms of CAS as defined in the 2007 ASHA technical report. Without the financial help of CASANA we would not be able to identify, analyze, and report on data relating to treatment effects in this subpopulation of CAS within the larger motor speech research study.

We hope that the study will provide concrete information on the impact of service delivery models (e.g. treatment intensity), parental training and home practice and magnitude of treatment success. Based on the findings of our study, we would be better able to justify changes to service delivery models and funding allocation for treatment, and to motivate and increase parental participation in the therapy process, allowing clinicians to develop appropriate levels of parental expectations and finally, to permit future researchers to plan appropriate study designs and estimate sample sizes. In this manner we feel that the proposed study directly relates to the mission statement of CASANA: “To strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech”.

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.

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.

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."

Question on PROMPT Therapy and When To End It

Ask the Expert - Dr. Kathy Jakielski

We are at the National Apraxia Conference and spent some time asking one of our speakers, Dr. Kathy Jakielski several questions from parents on the Apraxia-KIDS website.

Question: In a Child that presents with both oral and verbal apraxia, what is more important to treat first, the oral or the verbal apraxia?

"If the oral apraxia is such that it is affecting a child's feeding or nutrition, then certainly that should be addressed right away! I would treat the feeding issues in a feeding context. If closing lips to drink is an issue due to oral apraxia, then practicing drinking with a cup (the actual task) would, in my mind, be appropriate. The child should practice doing whatever "oral" skill is needed vs. unrelated oral movements. The same is true of speech apraxia. Speech apraxia should also be treated by working on actual speech. One does not get "treated" before the other. If there is no "functional" problem that the child experiences from the oral apraxia, then working intensively just on speech would be the direction that I would take. I would always be working on the speech, not "waiting. It is not a question of which one would be first then next."

Somewhere Over the Rainbow - How Childhood Apraxia of Speech Affects the Life of My Child and Family

By Christa Stevens

[An essay in support of the scholarship application for CASANA’s 2009 National Conference on Childhood Apraxia of Speech]

One of the most memorable scenes from the classic film The Wizard of Oz is definitely the magnificence of the Emerald City. Remember how the Wizard requires all inhabitants and visitors to wear green-tinted spectacles? The view that these glasses offered made the Emerald City magical to Dorothy and her traveling companions, but it also distorted their vision and intensified the power of the Wizard over their lives.

Just like those green-tinted spectacles, my family’s vision has been totally jaded by our Elinor’s diagnosis of severe childhood apraxia of speech. The diagnosis has colored every aspect of our lives. To have a child who is entirely nonverbal has fundamentally changed how our family functions and experiences the world. To have a child who is nonverbal – but maybe isn’t doomed to be – if the “right” treatment decisions are made and implemented – is both overwhelming and debilitating.

To help conquer the powerful force of CAS my husband and I have changed our professional paths. He left behind a job he enjoyed and found fulfilling and aggressively sought out a new but extremely challenging professional opportunity to provide additional financial resources for our daughter’s therapies. I quit working full-time so that I can be my daughter’s full-time advocate. Elinor is extremely vulnerable because she cannot communicate that she is hurting, scared, or worried. She cannot tell me how the people that she is in contact with at school, for instance, treat her or make her feel. I have had to become an expert in reading her body language and monitoring her habits and behaviors. Her teachers, therapists, even her school bus driver, know that I am going to ask a lot of questions about her time with them. These actions have required my husband and me to be very assertive and step way outside our comfort zone. Often we could easily identify with the Cowardly Lion in the Wizard of Oz and feel desperately in need of the courage it takes to provide for Elinor’s special needs.

And just like the Scarecrow in the Wizard of Oz, I have had to put in a request for some additional brain power so that I can wade through the research and technical materials that help me understand my daughter’s diagnosis. The treatment options are vast and complex and I have spent countless hours researching the effectiveness of a variety of interventions such as hippotherapy, music therapy, nutritional support, ASL, AAC devices, and speech therapy methods. Furthermore, although I have no formal training in speech therapy, when one considers all the hours I am spending with speech therapists as they treat my daughter and the time I spend at home working with her individually, I may just end up being able to pass the state SLT licensing exam.

Sadly, the time that must be spent on Elinor’s special needs limits the time that is available for other activities. For example, I don’t cook for my family the way I would like and our house is often a mess. Elinor’s younger sister spends longer days at preschool than we would like but we feel it’s better that she be at school than sitting in the waiting room at therapy offices while Elinor gets treatments. I hear other women talk about scheduling “date nights” with their spouses and I remember the last set of “date nights” my husband and I had: six-weeks of evening ASL classes so that we could help build Elinor’s signing vocabulary. Right now we are considering taking our girls on their first family vacation but we don’t know if it would be wise to use the financial resources that way or disrupt Elinor’s therapy schedule.

Without a heart, the Tin Man in the Wizard of Oz was spared the persistent and unrelenting heartache that my husband and I feel as we deal with the severity of Elinor’s condition. We watch – and try to figure out our role – as other children come up to her and try to engage her in conversation and often end up walking away when Elinor is nonresponsive. We listen to other parents relate humorous stories about their child’s verbal precociousness: silly questions, grand storytelling, and energetic dialogue. Elinor’s little sister’s speech is developing normally and even this has been a bittersweet experience as we see how easily she produces sounds and can’t help compare her fluency with Elinor’s unrelenting struggle to produce verbal speech. And we feel desolation as we think that both sisters are missing out on developing the complex and intimate sibling relationship that is supported by spoken language. Our hearts beat fast as we rush Elinor through a hectic schedule to get her access to the educational and therapeutic experiences that she needs. And guilt weighs heavy on our hearts as we look back over the day and think of all the missed opportunities where we failed to integrate various therapeutic techniques into the daily tasks of family life. Our hearts are heavy and tired and have broken time and time again because of Elinor’s condition. But we just keep mending them and trying to find a safe place and way to grieve and then rejuvenate ourselves for the work that still needs to be done.

With childhood apraxia of speech, there is no magic answer – no set of ruby slippers – that is going to instantly cure our daughter of her severe language disorder. Our family is facing years and years of therapeutic interventions, an increasingly heavy financial burden, mind-numbing research, agonized decision-making of choosing among treatments, and long tedious work of implementing treatment plans. Even though we regard the world through the tinted spectacles of CAS, we are trying not to be permanently distorted by the view. We try to be honest and realistic about the journey that lies ahead for our family while still appreciating the marvel and magnificence of parenting our amazing and delightful daughters. We know the yellow brick road of parenting a child with CAS has taken us – and will continue to take us – down some difficult and troublesome paths. Although we cannot see what lies ahead or how long our journey will take us, we can clearly imagine our beautiful and enchanting Elinor impersonating Judy Garland as she sings:

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.