The Relationship Between Treatment Intensity & Treatment Outcomes for Children with Apraxia of Speech

by Aravind Namasivayam Ph.D. S-LP(C)

Childhood Apraxia of Speech (CAS) is in terms of diagnosis and treatment a very challenging and complicated speech disorder in children. Children with CAS find it difficult or impossible to accurately produce speech sounds and/or words despite having a good understanding of language. Although there are several treatment approaches for CAS, there are very few published studies examining their efficiency and effectiveness. For example, at present, we do not know the amount of change in speech intelligibility (the degree by which their speech can be understood by a listener) or their ability to communicate effectively in real world situations (i.e., functional communication) following treatment. We also do not know if more intense treatment (although promoted by most clinicians) is actually better for this population.  Thus, there is a strong need for well-designed research studies in this area to advance clinical practice.

In July 2011, the Childhood Apraxia of Speech Association of North America (CASANA) awarded a competitive clinical treatment research grant to Dr. Aravind Namasivayam of the Speech and Stuttering Institute in Toronto, Ontario, Canada. His team consisted of experts in the areas of CAS research (Dr. Ben Maassen, University of Groningen in the Netherlands), speech science (Dr. Pascal van Lieshout, University of Toronto in Canada) and speech disorders treatment (Ms. Margit Pukonen from the Speech and Stuttering Institute, Toronto, Canada). The CASANA funding was used in support of the research project titled “Exploring the Relationship Between Treatment Intensity and Treatment Outcomes for Children with Apraxia of Speech”. 

Using the funds from the CASANA grant a specialized screening tool was developed to identify a subpopulation of two to five-year-old children, who demonstrated characteristics of CAS, from a larger database of 102 preschool age children with motor speech issues. All children received a specialized motor speech treatment program delivered by qualified speech-language pathologists in one of two possible treatment formats: high-intensity (2 times a week for 10 weeks) or low-intensity (1 time a week for 10 weeks).  Each speech therapy session lasted for 45 minutes. The speech-language pathologists providing the treatment were randomly assigned to either of these treatment formats. A child’s ability to correctly produce speech sounds in words, speech intelligibility and functional communication were evaluated both before and after treatment. Speech intelligibility was assessed at the word-level (percentage of words correctly identified by a listener) and at the sentence-level (percentage of words correctly understood in imitated sentences by a listener).

Overall, the results of the study demonstrated that the outcomes of the high-intensity treatment were superior to those of the low-intensity treatment. Specifically, high-intensity treatment resulted in a significant change in a child’s speech production abilities, word-level intelligibility and functional communication when compared to low-intensity treatment.  Furthermore, high-intensity treatment produced almost twice the amount of positive changes and had fewer children failing in treatment (i.e. not showing any real progress- especially for speech production) relative to the low-intensity treatment.  However, neither high- nor low-intensity treatment improved sentence-level speech intelligibility in children with CAS.

This CASANA funded study represents the largest data set available to-date relating the amount of therapy induced change and treatment dose and its effects on speech intelligibility and functional communication outcomes in children with CAS. The results from the study could be used to set appropriate levels of clinician and parental expectations prior to treatment and could potentially guide clinical practice (e.g. amount and possibly type of treatment required for this population).

Importantly, even though positive changes were found for speech production and functional communication in CAS children with 20 sessions (2 times a week / 10 weeks) there was only minimal improvement in sentence-level speech intelligibility following treatment. Thus, the CAS children may benefit from more than 20 sessions of therapy and from a treatment program that systematically builds in practice of speech production targets in longer utterances (i.e. phrases, sentences, connected speech). At present additional analyses are being carried out to identify factors contributing to positive outcomes in children with CAS. For example, we ask which of the following factors affect a child’s treatment outcomes: child’s participation in the therapy process, amount of home practice and/or quality of parent-child interaction? With further analysis, we will be able to identify key factors that contribute to positive treatment outcomes in children with CAS and thus make a significant contribution to future clinical practice in this area.

[CASANA funded research dollars are raised through the Walk for Children with Apraxia]

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.

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.

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.

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.

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

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.

For Julia... Whatever It Takes

[by Tom K., essay as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

My wife and I are the proud parents of a six year old daughter named Julia and she has been diagnosed with Speech Apraxia. Julia came into our world as a beautiful baby girl just a few days before the 4th of July in 2002. As Julia grew and became a toddler it became very evident that she was not talking and when she did try to utter words they were very difficult for us to understand. At this point we had plenty of input from parents, grandparents and friends. They all had advice as to why Julia was not talking: Julia was fine, she would talk when she was good and ready. Some advice even went as far to tell us that their children didn’t talk for the first time until they were three or four years of age. In order for Julia to communicate with us during these early stages she would point, jump and make utterances.

I vividly recall a trip to Disney World we took in 2005; at this point Julia was three years of age. We had a great time at Disney World’s Magic Kingdom and when it came time for the “Electric Light Parade” Julia wanted a Mickey Mouse balloon, because we could not understand Julia’s request or realize what she was pointing at in a crowd of people, needless to say the day at Disney ended in tears from Julia. For the very first time we witnessed what a difficult time Julia had communicating even with us.

While we watched and hoped for Julia’s speech to progress I was transferred to as part of a job relocation. This was a major change in our lives. Both my wife and I had never lived away from our hometown but we made the decision to move our family of five. Little did we know that this decision would put us on the path to Julia’s diagnose of Speech Apraxia.

As we settled into our new home, Julia’s speech continued to struggle. My wife Tracie knew that Julia’s speech was not progressing as it should and she took matters into her own hands. My wife contacted the office in our county that dealt with special needs children. After six months of in home visits and a special program at the Area Education Agency (AEA), Julia learned sign language and she was able to communicate a little better. Because the AEA is a state run organization they were unable to give us a diagnosis. This was not good enough for us and so a battery of tests began. Trips to the neurologist, MRI, sleep test, tonsils removed and still the doctors could not tell us what was wrong. We then took Julia to a nearby city for another round of tests in which she was diagnosed with Speech Apraxia.

My wife, who has championed to help Julia continue to strive even though she had Speech Apraxia, would not settle. She knew that other then speech, Julia was developing as all other children her age. Through the AEA, Julia was able to attend preschool through the public school system and received specialized instruction for speech therapy. Julia’s Speech Pathologist Mary Beth was truly an angel in Julia’s life. Mary Beth took great interest in Julia’s disability and worked tirelessly to try and find other resources that we could take advantage of while school was out of session or even after school hours. We could see the dedication that was shown by Mary Beth and the path was now set for Julia to get the help she desperately needed. Mary Beth helped us get a scholarship through the hospital so Julia could obtain extra services in the summer.

When Julia entered Kindergarten we decided to send her to Catholic school. Her new speech therapist was not as enthusiastic about Julia or her condition, and we once again hit a brick wall. The difference this time was that Julia was beginning to know the difference as well. She was having difficulty communicating with her classmates and at time was made fun of. I can truly say that this was one of the hardest times in mine and my wife’s life. Although Mary Beth was no longer working with Julia, my wife called and Mary Beth referred us to a specialized program at a nearby college. Mary Beth was not sure they would have openings but it was worth a shot. The college offered a program through their Communication Sciences and Disorders Department. It was here that we were put in contact with a professor who was an apraxia expert, after my wife’s first phone call she put down the phone and cried. Someone understood and could explain what was going on; we felt hope! This program and the individuals associated with it have been the most significant and inspirational aspects of Julia’s treatment for Speech Apraxia.

Julia attends classes at the college three days a week for twenty minute sessions with a student at the college who is studying to work in the field of Speech Pathology. The program is closely monitored by the professional staff and we and everyone who knows Julia have witnessed a transformation. Julia’s ability to communicate has improved dramatically in the past year and a half. We know now that God has played a role in this journey. If I had not taken the job transfer we would have never found Mary Beth and we would have never found out about this wonderful program at the college. It is expensive to send Julia and I have taken on a second job in order to help defer the costs associated with the program, but no amount of money can be placed on what we have received and the progress our daughter has made. In fact we now joke that Julia is never quiet.

Recently we were asked if we would like to participate in an apraxia research study. We were more than honored to have been asked to participate in this study so that families like ours might some day gain a better understanding of this disability. When ever we are asked to participate we say “YES”! We will do what ever it takes to help others by getting the word out. The college professor and the student's in the program have given us and our little girl the ability to communicate and for that we are grateful. We know we have a long journey ahead of us with Julia but we are also very much appreciative of the progress made to date.

The Roller Coaster Ride That Is Childhood Apraxia of Speech

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

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

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

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

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

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

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

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

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

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

He'll Talk When He's "Ready"... Not Exactly

[By Angela Brown; submitted as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

The words “I do” can mean something different to so many people. In many it may spark the image of a bride and groom.  For people who have children with Childhood Apraxia of Speech, it may be a phrase that their child is able to say clearly after years of speech therapy.  When I was pregnant with our son, I remember watching "Good Morning America" during National Autism Awareness Week and being struck by the ratio of boys compared to girls with Autism.  I felt so scared to have a boy.

 

Andy was born a healthy boy, weighing in at 7 pounds 15 ounces, just like his sister.  At 15 months, Andy said “bye bye” and we were so excited, I remember that day as clear as it was yesterday.  That was the last time I’ve heard it said that clearly.  Looking back I also recall how excited we had to get him before he could get the words out of his mouth.  Things seemed to progress normally and then we noticed that Andy’s walking was unstable and he kept falling.  We came to learn that he was Hypotonic, which means basically low muscle tone.  But what people need to understand is how much being hypotonic can affect your entire body.

 

My husband and I yearned to hear the words “mommy and daddy” and they didn’t come.  Andy was able to say a few words such as; truck, cap, sock and shoe.  But eventually we no longer heard those.  We watched him play and knew he understood what we told him but he just seemed to babble back at us.  People thought it was cute and kept saying he’ll talk when he’s ready.  I guess in my heart I knew it was more than that.  We turned to our pediatrician for help and were referred to speech therapy.  After meeting Andy’s speech therapist, Anne, I knew she was a fit for him.  He seemed to bond with her and she helped us understand exactly what Apraxia could mean.  We met for two or three sessions to have Andy evaluated.  The diagnosis was severe Childhood Apraxia of Speech, also one of the most severe Anne has seen.  Basically here’s where our journey begins.

Our first born, Madeline, I am convinced was born talking and hasn’t stopped since then.  I began to notice that Andy “talked” as much but we just didn’t know what he was saying.  Out of frustration, Andy began to bite and hit.  Here’s this little boy trying to get us to understand and we just weren’t able to.  It was one horrible fit after another.  My daughter got the majority of the biting which still makes me feel horrible.  I believe in Andy’s brain, that when he was babbling to us he was hearing what he wanted to say but what came out of his mouth was completely different.  I would dread taking him places because he was like a super ball in a room and then add the fact that he wasn’t able to tell me what he wanted. 

When Andy was about 18 months old, I kept waiting to hear him call me mommy.  If he was very upset or worked up about something he would call out mama.  People constantly said, "Don’t worry; he’ll talk when he’s ready."  What we didn’t know was that Andy was ready to talk but physically he wasn’t able to.  When I’ve told people that Andy is able to understand just about everything you say; he’s just unable to communicate back with his voice.  I’ll be signing a few things to Andy and I have had people tell me, "Well he looks normal."  That’s when I tell them that Apraxia doesn’t have a face.  It truly affects more than an individual person.  We try to make it an open topic within our lives.  A few times when Andy has had meltdowns and I don’t understand why, I’ve had people look at me and stare.  On the flipside, being so open has helped two of my friends from high school get help for their children.

 

Everybody wants the best for their children.  But when one of your children has a problem the balance can be harder to maintain.  Our daughter is very aware of her brother’s lack of speech, what she never forgets is that he understands almost everything people say.  Having a son that has a special need has made my husband and me more aware of everything.  When I tell people about Andy I never say there’s something “wrong” with him.  There’s nothing wrong about him, he has trouble forming words is all I say.   

Having a child with apraxia of speech has made me see the genuine goodness that people have and it’s also shown me the epitome of ignorance in society.  For as difficult as a single day could be, we don’t know any other way.  Honestly, I can’t even imagine what it would be like to have two children talking like my daughter does.  We laugh about it and make jokes, but we pray for it every day.

   

Andy recently celebrated his fourth birthday and it was special.  He was able to blow out his birthday candles!  It was very exciting for my husband and I, as well as, Andy.  If you asked me at age 22 would I ever cry at the sight of a boy blowing out a birthday candle, I’d probably tell you no.  It was great!  

Nobody ever really knows what life brings.  I’m fascinated by the way children are taught in speech therapy, all the different things to help lessen the burden of Apraxia on a child.  Watching Andy go from Speech to Occupational Therapy or Physical Therapy on a Monday afternoon just amazes.  Some days there’s drastic improvement and other days, it seems like he’s regressed.   At home, most of Andy’s play is based on his therapies.  I don’t know many 4 year olds that hang from a chin up bar in the basement for fun.  We often put small objects in rice to help with Andy’s sensory issues.  I always say, rice is the new Play-doh!  It’s funny to see the expression people get when they come over in the winter and we’re blowing bubbles.

 

I’ve declared this the summer of fun!  After spending almost one year of doctor appointments ruling out Muscular Dystrophy, cardiac problems, neurological issues, genetic issues, vision and hearing problems, I think my family deserves it.  Rather than running to a doctor's appointment, I try to make it a few hours at a park. One day my hope is that I’m standing watching my kids playing and Andy will stand up and say something like, "How am I doing mommy?"  I also wonder how many things Andy will be able to tell me that his sister does and blames him!  Either way, I look forward to both!

 

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

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

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

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

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

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

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

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

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

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

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

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

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.