Today’s interview is with Sharon Gretz of CASANA – this was originally published on May 14th 2013 for the first Apraxia Awareness Day, we are republishing it today in honor of Apraxia Awareness Day – Thursday May 14th 2015
Thank you for participating our interview, Sharon thank you for joining us today.. Today is Apraxia Awareness Day so a great time to learn about CASANA and Childhood Apraxia of Speech (CAS or Apraxia)
What is CASANA?
CASANA is the acronym that stands for the Childhood Apraxia of Speech Association of North America. We are the only national 501c3 nonprofit organization dedicated exclusively to children with apraxia of speech and their families.
What is Childhood Apraxia of Speech ?
Childhood Apraxia of Speech is a neurologically based speech disorder in which children have difficulty with planning the movements that underlie speech. We often do not think about speech as a motor action, but in fact, the act of physically producing speech is probably the most refined movements that humans create! What people most notice in children with apraxia of speech, before treatment or when severely affected, is that they have limited speech or speech that is very difficult to understand, sometimes even their own family does not understand. It is among the most severe of speech and communication disorders in children.
How and when was CASANA founded? CASANA was incorporated in 2000, but informally started several years earlier when I created an online email discussion group about apraxia. A short time later, with the help of other volunteers, we created the Apraxia-KIDS.org website too. At that time – the mid to late 1990’s, the world wide web was brand new and there was no information available to families about apraxia. My son had been diagnosed in 1994 and aside from a few obscure professional journal articles in a university library, I had no information to go on. That seems almost hard to believe now given the internet and how much information is available now! And so around the time CASANA incorporated, the whole thing was just getting way to big to operate alone or solely in my living room on my home computer. Clearly, a bigger response was needed because the problem of speech apraxia is one with enormous impact on these children and the families too. So, I gathered some dedicated other parents and family members of those with CAS and together we have made this thing not only survive, but grow strong and be a world wide source of information for all those who are impacted. We also believed that in order for the children to thrive, we needed 3 legs to our stool. Families represent one leg. Speech – language pathologists and other professionals, the 2nd leg, and researchers the 3rd leg. Together – we could all make a difference for the children and their futures.
Tell us about your personal experience with Apraxia ? My youngest son was diagnosed with severe apraxia at a little over 3 years old. He had been in speech therapy through early intervention birth to three program for an entire year, first at 1x a week then at 2x a week. But yet, he did not really say anymore at the end of that year than he had at the beginning. I was very concerned and through a physician friend had him evaluated by the head of Audiology and Communication Disorders at our Children’s Hospital and one of the other SLPs there. After the evaluation, they met with me and delivered the news that my son had something called apraxia of speech and that it was severe. I remember feeling relieved because I knew something more was wrong than just a speech delay and hoped that finding out the “what” would lead to help that truly helped. But I was also like a deer in headlights. I had no idea what it would mean. What was said to me did not totally absorb that day.
But the blessing that came from that fateful day was being connected to an SLP who had great success with kids who had apraxia and having a new team who understood how to help my son learn to speak. I distinctly remember sitting in the observation room, behind a one way mirror/window and watching speech therapy – day after day, week after week, year after year. It was as if I was watching the unfolding of human potential right before my eyes. My son’s SLP was/is marvelous, extraordinary really – as both a clinician and a human being (my son was lucky enough to receive intensive speech therapy from none other than apraxia expert David Hammer). Watching the two of them together was truly an awe inspiring experience. They had a special bond; still do for that matter. My son was so motivated. He wanted to speak. He wanted it so bad. And David Hammer, he was magical with my son. He knew just what to do to elicit speech attempts, how to shape those speech attempts into understandable words, and how to make my son delight in repeated practice of the very thing that was the most difficult thing in his life. It was beautiful. In my mind, CASANA and our work are a tribute to them both and to who they were to each other and for the miracle of my son’s voice. Luke is now a young adult in college and apraxia is not something on his mind much. His speech is terrific, thanks to his hard work and Dave’s talent as a clinician.
The bottom line is that I know the struggle. I’ve walked in those shoes and there is nothing that gives me more satisfaction than to reach out and help another parent who is like that deer in the head-lights and to see them and their child unfold, grow and develop into everything they were meant to be.
What services does CASANA offer?
CASANA has three main areas of focus: information, awareness and support; education; and research. So we do many things!! I am so proud of what we do and the difference we have made. Our website and online resources are a wealth and treasure-trove of amazing information for parents and professionals on all aspects of CAS. We have “grown up” as an online support network and this includes our email discussion listserv and our many facebook groups. We raise awareness with the help of wonderful volunteers in the Walk for Children with Apraxia®. This effort has grown from humble beginnings started by a 7 year old boy, Sean Freiburger, and his mom, Sue, here in Pittsburgh and has grown to this year include about 70 walks in communities across North America and probably, before this year is done, over 15,000 walkers. It is so exciting to watch this Apraxia community grow and blossom as a result of the Walk for Children with Apraxia®! The first Apraxia Awareness Day, Tuesday May 14, 2013 is proving to be another amazing effort fueled by thousands of families and supporters. Through our support efforts, CASANA along with wonderful partners such as the Silent Star Foundation, have provided 150 ipads and cases to children with apraxia. This year we hope to provide another 150 ipads and cases. Just a few weeks ago, we announced a new partnership with the Small Steps in Speech organization in which CASANA funds will be distributed in small grants to needy children with apraxia in order to supplement their speech therapy costs.
In our educational efforts, each year CASANA offers 6 – 8 apraxia workshops, monthly webinars, basic short 2 – 3 hour seminars, and a fantastic annual three day conference. We have also for several years run our CASANA Apraxia Intensive Training Institute in which we select a small class of speech-language professionals who have demonstrated some good experience with CAS and we take them to “boot camp” with expert faculty in order to further hone their expertise and specialty in apraxia. So far we have had forty graduates of our Intensive Training program. Each year CASANA provides direct education to over 2,000 people.
Finally, there are CASANA’s research efforts. We work with apraxia researchers in order to help connect appropriate families to research projects they may be interested in or their children qualified for. CASANA also funds research and in fact, we are the only dedicated funding body for CAS research. In recent years, our ability to fund research has been increased due to funds raised in the Walk for Children with Apraxia®. Our Apraxia Research Registry is another aspect. This one is unique in that it is a “bottom’s up” approach in which parents are entering extensive data on matters like prenatal birth history, birth history, post-natal period, early development, speech development, medical, educational, etc. The idea is to collect enough information in which we can begin to examine aggregate data and get a better idea of trends in some of these areas. Additionally, we hope to use the registry to further connect families and the research community on specific projects. Just recently, we hosted the 2013 Childhood Apraxia of Speech Research Symposium and heard from dozens of apraxia researchers from all over the world on current thinking and the state of the art in CAS research. We are currently prepping video of that event for public viewing in an online streaming.
Are your continuing education courses and conference only for SLPs ? Almost everything we do involves families and professionals, and educational courses are no exception! Many parents attend our webinars, workshops and of course the national conference!
Anything else you would like to share
Just that we are very grateful to our supporters and the apraxia community for its faith, trust, and tangible support. CASANA has grown rapidly in the last several years and we are still trying to absorb it all while we keep adding much needed programs. And, I also want to acknowledge and thank our wonderful staff, Board of Directors and Professional Board of Advisors. Our work, and the progress being made, is really a labor of love, a group effort, with everyone making their own very unique contributions.
Thank you so much for talking with us today and sharing a bit about CASANA. We really appreciated the chance to get to know you!