Interview: Sharon Gretz, MEd, on Childhood Apraxia of Speech
Sharon Gretz is the founder and current executive director of the Childhood Apraxia of Speech Association of North America (CASANA). She also is the parent of a child diagnosed with apraxia of speech.
Sharon's personal journey with her son, as well as her professional dedication to helping children and families affected by apraxia is both inspiring and incredibly insightful. My hope is that therapists and parents will be moved and motivated by her story, her words and her passion.
Stephanie: Sharon, thank you so much for taking the time to speak with me and complete this interview. Let's start off by hearing about you and your background.
Sharon: I am married with three children, the youngest of which was diagnosed with severe apraxia of speech at age 3. He's now 17 years old and considering colleges to investigate. I have my Masters Degree in counseling (MEd) and have completed all graduate course work toward my PhD in communication sciences and disorders. I have a long history of working in disability services and nonprofit program development and this gave me a real advantage when my son was diagnosed with CAS. I incorporated CASANA in 2000. Shortly thereafter, CASANA received its 501c3 designation as a public charity from the IRS. Our organization is governed by an active board of directors, all of which have a personal connection to apraxia. I am happy to say that just January 1 of this year I became the first full time Executive Director of CASANA, our first full time paid staff position.
Stephanie: Please tell us what it was like to first receive your son's diagnosis. How did it affect your family?
Sharon: Goodness, it affected our family in countless ways! First of all, once my son was diagnosed we were told both that apraxia is a very challenging speech disorder and that his prognosis was guarded. As we understood it, with appropriate therapy and enough of it, our son would be able to "improve his intelligible speech" but how much, no one knew. I felt pretty numb. You go in thinking your child has a "speech delay" and come out not even sure your child will have fully functioning speech - ever. Numb is the best word to describe the initial feeling. Then came the fear.
Would we "know" appropriate therapy if we saw it? What if we could not find someone who really knew how to help? What if we let our son down? In the end, we were connected with a true expert and for that we will always be grateful. My son started one on one individual private speech therapy four times a week. It made working full time hard. I was fortunate that my boss at the time let me change to part time and working from home so that I could take my son to his speech therapy, sit in the observation room and watch his treatment, and spend lots of time with him at home following through on his therapy program. It felt for some period of time that our lives revolved around speech therapy; both private and at his preschool. Add occupational therapy (which many of the kids end up needing) and the financial burden and we were very stretched!
I was very fortunate that our entire extended family rallied around us. Aunts, uncles, grandparents - everyone became committed to doing whatever it took to provide my son his best shot at speech. In that way, we were very rich.
Stephanie: Can you tell us more about the specific therapeutic techniques that were instrumental in helping your son?
First of all, let me tell you what did NOT benefit my son's speech production. For the first year of his speech therapy, prior to any understanding by myself or a professional that he had childhood apraxia of speech (CAS), he received EI speech therapy akin to what you would know as "language stimulation." He received this type of therapy for one year, first once a week, then twice a week, with no benefit at all to his speech production.
This was a child who brought many strengths to speech therapy including an extraordinarily good attention span; good cognitive and receptive skills; and a strong intent to communicate. It was after one year and his transition to preschool services from the birth to three early intervention program that I sought out a private speech-language evaluation at our local children's hospital. That was where he was diagnosed with very severe CAS when he was 3 years old. In retrospect, that lack of progress in my son, despite treatment being delivered, should never have been acceptable to the professional.
My son immediately, and I mean from the very first day, began to make progress with a new SLP, David Hammer, from his eclectic "multi-sensory" approach. Specifically, my son's attention and effort were directly brought to his articulators and what he was doing with them. Visual, tactile, and verbal cueing was used that appeared to help him associate the cue with a particular speech movement. It was as if the cues sparked a motor memory for what he was being asked to produce. The focus of this treatment was on speech movement and being able to join movements, first, for short functional words and then into longer units such as phrases and multi-syllabic words.
Very early in my son's "new" therapy, he benefited from a core vocabulary approach. I think this is a great strategy for early intervention SLPs. Basically, the SLP, after getting a complete phonemic inventory, worked with me to identify a small set of functional words with high utility for my son in particular. So, my son was having some success with bilabials and alveolar stops and amazingly had a final /s/ in his small repertoire. He had few vowels aside from schwa. With this in mind we crafted a list like "me, bus, boy, eat, mad, up, pup..." and several others. We used a small photo book and inserted both a photo of the word/action and the written word. This became a practice set for us to be able to use at home to reinforce what was happening in the therapy room. My son could show the book to his father and siblings and was proud to practice "reading" it.
Once the set of words became more automatic and accurate, new words were added with consideration to the phonemes he could produce, those that were stimulable, and so forth. Eventually, he got so good we dropped the book!
In some cases, my son was directly taught to produce single sounds because his apraxia was so severe. In fact, I think that in his case nearly all consonant sounds were directly taught. That being said, the focus of therapy was not to perfect those sounds prior to moving on to working on short words. There was constant shifting between working on the movements needed for words and backing up to fix accuracy of individual phonemes.
My son was asked to produce many, many repetitions of the syllables or words that were targeted. The SLP was quite creative in setting up fun play scenarios and setting rules for games that made it nearly mandatory that my son make multiple attempts (think "drill play"). It was not uncommon to hear dozens and dozens of productions of the speech targets in a single therapy session.
Simple sign language was used to not only bridge communication gaps when my son's verbal attempts were not understood but to also serve as visual and tactile cues. It helped enormously when the sign and verbal attempt were paired as they always were. The great thing about signs is that you can fade out the cues over time as the child's system becomes more competent. I found that it also served as motivation early on when speech attempts were unintelligible. When paired with a sign, if I could not understand my son's verbal attempt I had a good chance of catching the sign and thus could respond appropriately, and reinforce his communication attempts. Many children can learn simple signs, although for some children it may be too frustrating due to fine motor deficits. In that case, the SLP can still use signs as visual cues for the child.
Stephanie: As a parent, what advice would you give to other parents who may be hearing the diagnosis of apraxia for the first time?
Sharon: Well, first of all, parents should not blame themselves, as if they did something to "cause" apraxia in their child. Secondly, they should go ahead and allow themselves to feel sad, mad, and/or sorry for their child and for themselves for a short period of time. This is understandable and necessary. However, inevitably they must pick themselves up, brush themselves off and get out there and learn as much as they can about this speech problem and how children are best helped. Becoming an effective advocate is something all parents should strive for and which is critically important to their child.
While it is important to have hope and to know that children can actually do quite well with appropriate help, each child with apraxia is a unique constellation of strengths and needs. No two of our children are totally alike. So be somewhat cautious comparing children with CAS to one another.
Learn how to critically evaluate and weigh all information and sources of that information and to then apply knowledge vis-à-vis what they know about their own child's needs. Treatments recommended should be able to withstand a parent's critical scrutiny. I highly suggest trying to form a team with your child's SLP, physician and others.
Get connected! Our online groups are a great way to get valuable information but also personal support available in your home, when you need it. Our summer conference is immeasurably valuable and inspirational too!
The good news is that with appropriate help and enough of it, many of our children become quite effective speakers, so much so that others could not possibly guess that they once had a severe speech disorder. CASANA will continue to push for research so that we can learn more about all the factors involved. Hang on and have hope!
Stephanie: Unfortunately, there are many parents out there who are struggling the way you were years ago when your son was first diagnosed. What prompted you to go beyond your experience and begin CASANA?
Sharon: First, when my son was diagnosed, I had not heard of apraxia of speech in children. There was no information specifically designed for parents. What I was able to locate was the very sparse professional literature and quite frankly, from my read of it, the future for these kids sounded pretty bleak. We were fortunate to get connected with a SLP who had years of successful experience treating children with CAS, and so the clinical experience of our SLP did not necessarily match the dire prediction of the professional literature.
My son struggled through about 5 years of individual speech therapy, and I do mean "struggled". The amount of time, concentration, and intense effort that was put forth by both my young son and his wonderful SLP was truly something to witness and something I could not forget. CASANA is a tribute to both of them and to the reality of what this disorder means to children and their families, as well as the professionals who provide help.
The partnership between our family and our son's SLP was critically important and benefited my son in countless ways. In my "spare" time, I dedicated myself to learning everything that I could about apraxia, reading and deciphering every text book and journal article that I could locate. My son's SLP took me under his wing almost like he would a graduate student and provided additional knowledge. I also observed over 200 individual speech therapy sessions. At the end of the day, I had learned a TON about CAS. The decision for me once that I knew my own son was going to be ok, was... do I walk away and go my merry way? Or do I have a responsibility to share what I learned and to help other families?
Secondly, back when my son was diagnosed in 1994, the internet was still quite "young". Imagine, there was nothing called a blog! I had found some online bulletin boards and through that, several parents of children with apraxia. In 1997, I decided to take the leap and started an email discussion group (listserv) about apraxia. Well, the Apraxia-KIDS listserv was (and still is) wildly successful. It just grew and grew and then grew more.
Later, other parents assisted in helping to set up a companion website so more information could be shared. I was contacted more and more for information and was even offered funding now and then; though at the time I was still a "mom" sitting at my home computer just trying to share what I had learned. Finally, the whole enterprise of trying to keep up with the needs as well as the time and expense became something that could not be effectively handled by an informal effort.
Third, though out the whole process I began to understand the need for factual information. In my mind, I felt that not only was relevant and accessible information needed, but also reliable information grounded in facts. It was clear very early that anyone could basically say anything they wanted to say on the internet. Who do you trust, really? There is a great responsibility when you are providing help to vulnerable people. I just really hoped that we could create an organization that's information would be trustworthy to families, professionals, and researchers.
Please join me on Friday for the second half of my interview when Sharon will talk about the services CASANA provides as well as some of the most recent information on apraxia research and treatment techniques.