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. 

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.

Father Leads Team to Raise Awareness and Over $22,000 in 2011 Denver Apraxia Walk

(Top Photo from left to right: Jill (Gillian) Green, Saoirse Green, Dan Green, and Siobhan Green; Bottom Photo: Siobhan Green)

On November 15, 2011, Team Leader Dan Green of Westminster, Colorado was selected to win an iPad for his efforts of raising $20,861.31 for Team Siobhan, bringing his team total to $22,053.31 in the Denver Walk for Children with Apraxia of Speech. CASANA selected Green as the Team Leader of the Top Fundraising Team out of a total of 44 Walks held all over North America.

However, for Green, his family, and his team, the incentive was more than winning an iPad; it was about raising awareness in his community and while doing so, raising funds to better the future for his four-year-old daughter, Siobhan, and other children with Apraxia.

When Siobhan was around the age of two years, Green and his wife, Jill, noticed she was not speaking, prompting them to take immediate action like any other parent. From researching online, getting involved with a local county program, to hiring a private speech-language pathologist, they were determined to find answers and to get a proper diagnosis for her. It was not until nearly a year later that she was formally diagnosed with Childhood Apraxia of Speech (CAS).

“CASANA raised awareness so that Siobhan could be diagnosed, and early enough so that we could make an aggressive push to get her to articulate,” said Green, a consultant to startups and venture capital firms. “It was very helpful to go through all the research on the CASANA website and understand what we would be dealing with. The Walk in our area was also instrumental in getting us in touch with other parents of children with Apraxia in the area, allowing us to establish a local social network.”

This network included contacts to trained speech therapists and information that made Green a “smarter consumer of speech therapy services” which introduced him and his wife to techniques that would best help Siobhan resolve. After receiving this help, Green wanted to do more for Siobhan and for CASANA, so he decided the 2011 Denver Walk for Apraxia was his opportunity to do so. When he became aware of CASANA’s iPad prize to be awarded to the Team Leader of the Top Fundraising Team, Green decided to make this his goal; he wanted to win the iPad for Siobhan so that he could help her learn language and help reduce her frustration level.

So with a clear target in sight, Green developed a strategy that combined his passion for photography and knowledge of business he obtained from Harvard University. He gathered several photos of Siobhan he had posted on his Facebook and he drafted letters that could be customized later. Next, he compiled a list of contacts from social media websites including his Facebook and LinkedIn profiles, both of which have a combined 835 personal and professional connections. His determination to reach his goal allowed him to see every person in these networks as a Walk contributor and a supporter. He felt the more people he reached was one less person he had to give an explanation to about his daughter having Apraxia.

“Folks raising money on behalf of the kids shouldn’t feel shy about approaching anybody, as long as there’s a personal connection. You’ll be surprised who’s going to donate. Our donors included two bestselling business authors whom I know and have worked with,” said Green, who found a surprising number of people he reached out to also have kids with Apraxia. Furthermore, most were talking about their child having Apraxia for the very first time outside of their immediate families and donated because they were glad an organization was finally there to support kids with Apraxia.

Green managed his fundraising goal continually by changing the amount a few thousand dollars at a time, so that it would only take 10 or 20 donations of average size to reach it. Ultimately, he wanted donors to know they had a real impact in helping him reach his goal.

“None of the past donors object if you’ve been successful enough to raise the bar a bit more,” said Green. “They usually applaud the success. Somewhere in the back of my head I thought we’d raise around $10,000 but I didn’t want to put that into print because it’s too unattainable to the average donor,” said Green. “Then we blew through $10,000 and I started to think about $20,000, but even then I didn’t put it in print.”

Green’s strategy zeroed in on prospective donors who looked for clues about average donation size when asked to “give from the heart.” He explained that providing guidance to prospective donors and how the question was framed really made a difference in a donation size. For example, he would ask for a donation of $10, $25, $50; of $50, $100, or $250; or of $100, $250, or $500, depending on what the prospective donor’s capacity was and what their willingness to give would be. He also utilized additional page features, such as the ticker and thermometer widgets to help guide and nudge the donation levels up.

“We went to people we thought would be $500 to $1,000 donors first; they were the pacesetters,” Green said. “We made sure that group included senior family members and colleagues whose names on our ticker would be a beacon for other donors. Then we stepped down to folks who were earlier in their careers and had less capacity to give.”

He felt that anchoring at higher numbers from respected members of the community, which people could see on his personal donation page, enticed people who would not have given to give and those who would have given anyway, to give more. Finally at the end he asked people of some means to stretch a bit and to help him make his then-goal of $20,000; a goal that at one point he was at risk of missing.

“We thought we were tapped out at around $18,000, then saw some extraordinary generosity by people who love Siobhan and really wanted to help in her name,” said Green. “They’d been holding out because they wanted to be Team Siobhan’s second wind.”

In the middle of all of this, a crucial moment for Green helped him find more motivation to keep going beyond his goal. “Siobhan got flustered while trying to tell me about a doggie she saw,” he said. “She cried, held her tongue, and signed, ‘Daddy, help me talk.’”

Pushing all doubts aside, Green continued to support his daughter by raising a total of $20,868.31 in his enthusiastic campaign. With a couple of additional donations and company matches, his team’s total reached over $22,053.31 for the 2011 Denver Walk for Children with Apraxia of Speech.

“Following up with donors to ask for a company match is usually well-received, as it's often not much work on the donor's part and is a great way for the donor to magnify the impact of his or her donation,” said Green. His widespread reach included a total of 186 individual donors that as a result would help support CASANA and benefit important funding for future programs and research.

To find out more about the Walk for Children with Apraxia of Speech, visit: http://www.apraxiawalk.org/

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”.

Is the iPad Worth It?

By Kim Singleton, M.S., CCC-SLP

Are you considering an iPad for your family with an eye on the benefits for your child with apraxia? Do you have an iPad and are not sure how to maximize its positive effects? How can you justify spending the bucks on such a cool toy for your family or school? The iPad provides an accessible, portable, dynamic and exciting playground for children with apraxia. In fact, this technology has benefits that other technologies and therapy activities lack. The iPad’s small size and weight (1.3 lbs.,) touch screen, fast load time, numerous applications and high quality audio recording capabilities merge to have a potentially huge impact on communication success.

As we know, children with apraxia have some common characteristics. For example, they benefit from opportunities to practice target sound sequences frequently. Our children do best when their experiences alternate between high and low communication demands. Accurate and supportive feedback speeds up speech learning. Children with apraxia benefit from feeling our cues as well as hearing and seeing cues to encourage understandable speech. Thoughtful use of the iPad can address these distinctive needs and be part of a solution to help our children reach their potential.

Does your child hate to practice speech sequences over and over? Often, this repetitive practice is hard work, with no intrinsic communicative value and children resist. With a motivating ‘app’ and quickly alternating turns, the iPad can encourage your child to practice, practice, and practice without distress.

With the iPad you can easily switch between activities with little time or preparation. This feature allows the users to rotate between activities with ease. It is easy to switch from verbal to nonverbal activities, alternating the communication demands. By using proficient skills, practicing emerging skills and learning new skills alternatively, our child with apraxia is anchored in success while risking more difficult sound sequences.

The iPad can provide feedback and cues to our child. Some apps cheer, clap or even groan! With the iPad’s built-in microphone and speakers, children can hear and compare their own sound productions with that of a stable auditory model. And it sounds fabulous! With the vast number of applications available, the iPad can provide visual cues that are motivating and high quality. With some practice [and a sturdy hand], the adult can incorporate tactile and kinesthetic cues while sharing an iPad activity.

Still not sure about the iPad? Then consider the iPod Touch. It is less than half the price and very light weight [.2 lbs]. Its size can make sharing an experience a bit more difficult but certainly worth considering. One last note, I have no investment, financial or otherwise, in Apple or any of its subsidiaries!

[View Kim using an iPad in therapy for a child with apraxia of speech]





[Kim Singleton, M.S., CCC-SLP has extensive experience serving children and adults with complicated communication challenges. She specializes in providing treatment to individuals with autism spectrum disorders, childhood apraxia of speech, and clients using augmentative and alternative communication systems. She serves individuals through her private practices in the Philadelphia and upstate South Carolina areas. For more information on Kim, please visit her website at http://www.kimsingleton.com]

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.

In Your Silence

In Your Silence

In your silence I hear your fear,
Your need to have me always near,
The fear you won't be understood.
Speak my child - if only you could.

Some people don't know, they say "She'll be alright!"
They don't see the pain, the anguish and fright.
You understand all that they say and infer,
Yet you cannot respond - a pain you incur.

My love for you is simply not enough,
To get you through life, at times will be tough.
But I will help you grow with all in me,
You shall find your voice, this I guarantee.

Your voice will be strong, your words so proud.
You will one day stand tall and speak out loud.
You won't fear anymore, not being understood.
It is then that we'll know we did all that we could.

So for now in your silence I hear your fear,
Your need to have me always near.
The fear you won't be understood,
One day will be gone - it will be gone for good.

(posted with permission of author Sarah Grainer)

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.

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.

Every Child Deserves A Voice

by Megan Steinke (originally on Hippymom.com; posted with permission of the author)

Childhood Apraxia of Speech is a motor speech disorder, a neurological disorder where the child cannot plan and coordinate speech movements. Ever have that feeling of a word on the tip of your tongue, but you can’t quite say it? Or slip over a word you knew and could say in your head? Imagine every word you ever tried to say coming out like that – even though you know what they should sound like, the sounds never quite make it from your brain to your mouth the way you want to say them.

CAS isn’t a very well-understood disorder. It’s also not a very common one, which is why resources on it for parents are pretty scarce. If your child is autistic or ADHD, dyslexic, any of the “common” special needs, you will find a wealth of information. If your child is apraxic, you might think he’s ceased to exist in the literary sphere. There are papers written by speech therapy professionals for speech therapy professionals, but to a layman they’re difficult to understand. Even books devoted to speech disorders don’t really cover it. If it weren’t for the Apraxia Kids Network website, I would have feared I was the only one. The website has been a lifesaver, both in terms of scholarly articles as resources, and as relief from the feeling of isolation that this diagnosis can bring.

Getting a diagnosis of CAS is very scary, but my children had been in speech therapy for two and a half years by the time we got it, and though I was terrified for their future, it was at least preferable to not knowing why they weren’t talking. We had been to countless speech therapists, and finally got in to see the pediatric developmental neurologist, who immediately diagnosed both boys as nearly identical cases of apraxia. He thought they were quite textbook and was surprised no one had diagnosed them before. He was fascinated by how alike their apraxia is. Since the causes of CAS are unknown, a set of identical twins with identical apraxia seems to make speech pathologists’ research senses tingle.

It’s a long and arduous process of speech therapies to bring language out of children with apraxia, and it’s emotionally exhausting for the parents. Support groups are invaluable. It’s a relatively rare disorder, however, so the only support you get may be online. There is a local CAS network in my area – in a group of seven cities with a population in the millions, home to the largest naval base in the world, there are nine children diagnosed with CAS. Two of them are mine. It is very isolating to deal with that kind of number.

I am continually having to explain apraxia to people, because it is so unusual and so unknown – even to their teachers. I spend a lot of time fighting for them, to get them the help they need. The cost of speech therapy for two children in the amount needed for CAS would bankrupt us if we went through a private firm, or worse, through the local children’s hospital. When we saw that the cost would be nearly $600 a week per child (and would go up if insurance decided to stop covering it), we knew we had to find other means to get what we needed. The local university has been invaluable to us, as they have a speech therapy program and need clinical patients for their students. My boys have received excellent therapy there, from some truly wonderful young women who put their whole hearts into my children’s care.

“Will my child ever speak normally?”

I stopped filling in my boys’ baby books as they got older and older and that “first word” slot was staring me in the face. One year old. Two years. Three. I wanted to write something down, anything. But their only noise was a monotone “mmmmm”. I wanted that word. I wanted it very badly. My children were three years old before they called me “Ma” for the first time, and for a very long time that was their only word, and I hugged it close to my heart every time they said it. On their fourth birthday, they had three words: Ma, Da, and buh (brother). They were four and a half when they told me – in words, not sign language – that they loved me.

When they were younger, we would watch the Signing Time DVDs, because the handful of signs that they had learned in speech therapy were their only means of communicating. I would listen to the song at the end – “Show Me A Sign” – and cry because the lyrics that Rachel de Azavedo wrote so touched me. They were exactly what I wanted to know from my children, exactly how I felt. I didn’t feel like I knew them sometimes. I just wanted to know that they were in there. They seemed so distant sometimes, though they were always affectionate, and no one ever saw signs of autism in them, something I feared. I always felt uncertain that I knew anything about who they were.

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Tell me that you’re happy and you love it when we’re laughing
Tell me more, show me a sign.

I know I’m not alone in that feeling. An SLP presenting at the 2004 Apraxia-KIDS conference wrote a poem of sorts to describe it that is broadly similar, particularly emotionally, to the song. And I know the CAS children feel it too.

While visiting a friend recently who has girl twins a year younger than my boys, they played with the girls’ dolls. Dominic put a baby doll in a stroller, wheeled it up to his brother, and said, “I be the mama, you be the doctor, and this is my baby.” Chris agreed, so Dom in his high-pitched ‘mama’ voice said, “Doctor, something wrong with my baby, he don’t talk. Why don’t my baby talk?” It was absolutely heartbreaking, and I still cry to recount it.

It’s been very hard on us over the past four years since we first began to realize that – as Dominic so succinctly put it – something was wrong with my babies, but we are finally starting to see improvement in huge leaps and bounds. They’ve come from a handful of single-word utterances to long and complex sentences with a vocabulary nearly on par for their age level in only a year, though they still have a lot of articulation errors and strangers find them difficult or impossible to understand. I’m at about 60% understanding what they say. It’s a wonderful thing to hear my children talking to each other, or to have one run past and say “I love you so much, Mama!” I had worried I would never hear it. I hope someday I’ll hear it without distortion.

Beautiful Girl

By Isobel Allen

You’re light has always shined so bright

Even when you lost your words

And we started this fight

You’re light shined bright

Happiness is infectious coming

From such a special child

I struggle to be more like you

Not letting the worry build

They will not misunderstand,

Or get it all wrong

Oh but sometimes they do

Does it hurt me more than you?

I see the words in your eyes

What you want to say with all your might

To join with the other kids

And still your light shines bright

How hard you have worked, what a feat

For such a young life

We will keep on going

Educating all we meet

Someday you will tell us

All your dreams and desires

This I have no doubt

The Joy you give we could not live without

I’ll always be by your side

My heart weighs heavy still as

You’re light shines bright

Our beautiful girl

Small Seeds Watered with Tears

[Written and delivered at the 2009 Pittsburgh Walk for Children with Apraxia of Speech]

by Sue Freiburger

When I look at Sean, it is hard to believe how far we have come in the past six years. He has grown in so many ways and achieved so much more than we had ever hoped for.

I want to share our story with the parents here with young children with apraxia. Sean’s apraxia was so severe that after a year of speech therapy thru early intervention, the only sound we had was “eh”. We discovered CASANA when Sean was around two and a half years old and began really aggressively pursuing intensive specialized therapy. We came to Pittsburgh to have Dave Hammer evaluate Sean and confirm the diagnosis of apraxia. My expectation was that we would leave with a treatment plan and a new direction. I was very hopeful that this would be our turning point.

After a two day evaluation, Dave sat down with us to review his results. The results were not good. Dave said that he was unable to stimulate any speech production from Sean and that at best, he could confirm a suspected severe case of childhood apraxia of speech, with a suspected underlying genetic condition. His prognosis of Sean every becoming a verbal communicator was poor. I held back my tears as I felt my world collapse beneath me. If an expert like Dave didn’t think that Sean was likely to ever be able to talk, where would we go from here?

As we got into out car, the tears started to flow. I knew that I had to pull myself together before we got back to the hotel room where my mom waited with our other two children. Eric had spotted a garden center across from the speech therapy center and thought that could be a diversion for both me and my mother. He suggested I pick out a special plant for her to thank her for coming to Pittsburgh and helping us out during Sean’s evaluation. I was drawn to a small lily plant that was very fragrant. I could explain my red eyes away by saying the flowers had aggravated my allergies...

My mother took the plant home to NY and planted it in a special spot in her front garden. We took Sean back to VA and began our search for a speech therapist who could offer us the intensive specialized therapy that Sean needed. We also began to investigate augmentive communication devices.

It was a long year, with many visits to specialists, long battles with the school system, and about nine hours of private therapies a week, but the following summer, Sean was successfully communicating using his Dynavox Augmentive Communicative Device. That June got a call from my mother telling me that the “Mr. Hammer” lily was in full bloom and it was spectacular.

Due my husband’s job transfer, we ended up moving to Pittsburgh that summer. Unfortunately, there was a long waiting list to get into speech therapy with Dave Hammer, but we kept plugging away. Sean slowly began to find his voice, starting with "Polamalu" when he was around four and half years old and is now quite the talker (and still a huge Steelers fan!)! After almost a year, Sean was able to start therapy with Dave Hammer and Dave couldn’t believe that this was the same little boy he had evaluated almost two years ago. We worked together as a team with Mr. Hammer and Sean continued to thrive. The “Mr. Hammer” lily is around eight feet tall and continues to remind us how far we have come from the day when we felt that all hope was gone.

Over the years, I have spent many hours in my garden, using it as my therapy to work out my frustrations with the long slow process of helping Sean to find his voice. Many of my plants have been watered with tears, but each year, they come back stronger and bigger than ever. Dave Hammer sometimes wonders if he should have given us such a grim prognosis at the evaluation, but we both know that it was a fair evaluation. Without his honest assessment, we never would have know just how hard we would have to work to help Sean find his voice. We would have accepted the school systems assessment that a three year old couldn’t use a high-tech augmentative communication device. We would have waited and waited for the words to come. The path we had to take was a difficult one, the work was hard, but Dave has given us a gift that we can never repay. Sean now has a voice and I have an enormous garden! We dug up a piece of that “Mr. Hammer” lily and split it – a piece of it to grow in my garden and a piece for Mr. Hammer to plant in his yard.

I collected seeds from the flowers in my garden to share with the other parents today. Scatter these in your garden to remind you that from small seeds, beautiful and wonderful things can grow. Let your tears flow on the days when things are tough, but hold on to hope.

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."

Diagnosis Brings Relief, And Yet So Many Questions About The Future

[by Karen Buescher, an essay for CASANA's Parent Scholarship Application for the 2009 National Conference on Childhood Apraxia of Speech]

Zack is 3 years old and was just recently diagnosed with mild oral apraxia and moderate CAS. Zack was born healthy with no complications at birth. All developmental milestones were met at the appropriate age except for speech and language. Zack was always a quiet baby and would easily entertain himself with play. At 15 months of age, he said his first word, "duck". However, he only said that for a few months and still to this day cannot say "duck". I did not realize that he was not developing speech like he should. See, not only am I Zack's mom, but I am also a speech therapist. One thing that I have learned from Zack having speech delay is that it is sure hard to separate being a mom and being a speech therapist. Don't get me wrong, knowledge is good; however, that knowledge can lead you to over diagnose your child so many times.

As I stated earlier, I am a speech therapist; a speech therapist who has limited knowledge about CAS. Many people take for granted that since I am a speech therapist, I should have known what to do to make my own son talk better. In response, I try to compare speech therapists to a doctor that specializes in one certain area. For example, if you are having chest pains, your family doctor may refer to a cardiologist. In the same token, if your child has apraxia of speech, you look for a speech therapist who has knowledge about apraxia of speech. Zack's dad, my husband has less knowledge than me. I try my best to explain speech terms to him but he has the look of deer in the headlights. The fact that we have little knowledge is going to change since we will be advocating for and assisting Zack to receive the services that he needs to improve his speech.

Zack is affected by CAS by not having his speech understood and he gives up easily. I am sure that Zack would love to speak to anyone and have his message understood without having to repeat himself numerous times. Zack becomes frustrated with talking and many times will stop trying to convey his thought or message. Fortunately for Zack, I can usually understand what he is trying to say. However, I cannot always be with him so I have to give Zack credit because he has learned other ways to communicate. He will use gestures or take you to what he is talking about. Also recently I have noticed that Zack is saying, "I can't do that." Of course he says it as "I ant U dat." This response is given frequently when we are practicing sounds or words. It absolutely breaks my heart to hear my little boy give up so easily. The one positive that I keep holding onto is that Zack has a great personality that makes him so fun to be around. I am hopeful that his personality will help others overlook his speech problems.

Zack has not only figured out how to get his message across, but also has figured out that if he plays alone, he will not have to talk to others. Many times when around other children, Zack will go and play by himself. Again, it breaks my heart to see my little boy playing by himself when other children are around. Hopefully, with time, his speech will improve and so will his desire to play with others.

As for the affect for us, his parents, we are relieved to have a diagnosis. Yes, it was hard at first to accept the diagnosis of CAS. one of the many hopes and dreams that all parents have for their children is to experience healthy, normal development. Then when we realized that our child was not developing speech sounds and talking like he should, we thought finding a diagnosis would explain why. Well, the diagnosis did help explain why; however, now we have many more questions and concerns. Many of these questions are about his future since he will be starting preschool in the fall. Will the other kids understand him? Will he be made fun of because he does not talk like the other children? Will he lose his happy go lucky personality that makes him so much fun to be around? So many unanswered questions that only time will answer.

As human beings, we take so many things for granted. The one thing that we will never take for granted is being able to have a conversation with Zack. We look forward to the day when we can sit down as a family and talk about our day. Currently, we can ask Zack about his day by asking him simple yes/no questions so that he does not get frustrated with his response. We will completely cherish the day when Zack can tell us what he did hopefully without having to repeat himself in order to be understood.