Q&A: Sharon Gretz, founder of Childhood Apraxia of Speech Association of North America
Posted August 27, 2015
What advice do you have for parents whose children have apraxia? What about parents who suspect their child has it?
The two biggest tips that I have for parents who have a child diagnosed with apraxia are first, to learn about it from high quality sources! What I have seen over the last decade or so that is parents who become educated about childhood apraxia of speech (CAS) and learn about their child's needs are in a much better position to advocate for those children. And believe me, the children do need our advocacy to assure that their speech, language and communication needs are met to the greatest extent possible. Secondly, I think parents find great strength and a big dose of hope by finding ways of connecting with other parents who have traveled this road before them. Our organization helps support parents and families in both ways - to provide high quality education and to help them gain support by getting connected to other parents.
Sometimes, for various reasons, a parent may suspect that their child has CAS. Most often they have been concerned about a lack of progress in speech development and sometimes children are already receiving speech therapy but little progress is noted and the therapy is provided as if the child has a simple delay of speech. My advice is to seek out a speech-language pathologist who is known for their experience at the assessment, identification, and treatment of children with CAS. Depending on circumstances, such as the child's age, it may not be possible to offer a firm diagnosis, but the child can still begin to receive treatment "as if" they did have apraxia until they are a bit older or can offer more of a speech sample to the evaluator.
What are some dos and don’ts when interacting with children with apraxia and their parents?
There is almost nothing more distressing to a parent of a child with apraxia than to have their concerns dismissed by those people closest to them. Unfortunately, I think at times it is hard for those around us to see us worried and upset and so they make comments like, "you are over-reacting" or "there's nothing wrong" or "Einstein didn't talk until he was 5". Perhaps even more painful is when family or close friends do not want to be around the child because they don't understand him or her. The best thing caring family and friends can do is to listen, be there, and ask how you can help. Continue to be involved with the child and family. Imagine. If you feel uncomfortable not being able to understand the child, how do you think the child feels about not being able to communicate? The child with a communication disorder like apraxia needs to know that you care, that you are hopeful for them, and that you understand they are working very hard at their talking. Do not pressure the child to talk because that actually makes things worse. Notice and point out the child's special talents and abilities.
What are some common misconceptions about apraxia?
I think one of the biggest misconceptions about apraxia of speech is children is that it is the same as a simple speech delay and the child will out grow it. It is not. CAS is perhaps one of the most challenging of all speech conditions that impact children. Children with apraxia will need a great deal of speech therapy over a number of years in order to have their best shot at being fully verbal and intelligible communicators. Another misconception is that apraxia is about muscle weakness. Childhood Apraxia of Speech is not about the oral or facial muscles being too weak for speaking, it is about a disruption in the child's ability to plan the movements of all the oral structures and the muscles that underlie the act of producing speech. Their is a glitch somewhere in the child's system that interrupts that process of planning which muscles should move, when should they move, how should the move, and so on in order to say a word or phrase. The act of speaking might be the most complex, refined, skilled motor action of which humans are capable.
How many children are diagnosed with apraxia?
We do not know how many children are diagnosed with apraxia. Our best estimates from the research to date is that approximately 1 - 2 children in 1000 have apraxia of speech. Or if you look at the caseload of a typical speech-language pathologist that serves children, perhaps 3 - 5% of their caseload would be children with apraxia. It is still considered a relatively rare speech disorder.
I read on CASANA’s website that your son was diagnosed with apraxia and you established the first parent support group. How is your son doing now?
Yes, that is true! My son is doing just great now. The journey toward full speech for him, as well as for other kids, is truly one of intense effort and motivation. He has beautiful speech now and you would never know that at one time he had a severe speech disorder. He has had the best possible outcome. It was truly inspiring to see him as a young child work so very hard with his amazing speech-language pathologist just to do what comes so effortlessly to other children. We were fortunate we were able to get him the best possible help and had resources that would pay for the extensive therapy, and a school system with amazing staff that truly had his best interests in mind. I wish this were true for all children and families. It is a goal our organization continues to strive for.
What would you like to see in the future when it comes to apraxia research and treatment?
Oh goodness, I have so many hopes for the future! Let's see. I want to see the research agree on a diagnostic marker, hopefully a biophysical marker, that would truly distinguish these children from other children with severe speech problems, hopefully enabling them to get into appropriate, and funded speech therapy. I would truly hope to see that an early marker or risk factors could be established that would indicate infants and toddlers who are at high risk and so they could get treatment that might avert or minimize this speech disorder. New treatment modalities are on the horizon. We know about them and it is really exciting, but they need funded in order to come to fruition. Finally, it is really hard to advocate for this issue when we don't have any really good incidence and prevalence information. So, a huge dream I have is of someone donating a large sum of funding to do a proper epidemiological study to figure out just how many children we are truly talking about. I hope I get to see that in my lifetime. I could literally go on and on with my dreams for how research and programs can help the kids and families!
Is there anything else you'd like to add?
Just that I encourage parents, families and friends of these children to get involved in efforts like the Walk for Apraxia. While the Walk is a big opportunity to raise both apraxia awareness and critical funding, it is much more than that. The Walk for Apraxia is a day for us to literally raise up these children and celebrate their accomplishments and efforts. These kids work so very hard. It is so meaningful for them to be recognized for that at the Walks and for them to look around them - as well as their parents being able to look around - and see that they are not alone. That there is a community of support and concern and that we celebrate them. It is powerful. I also hope that parents will get involved in CASANA in whatever way that they can so that we can continue to make the progress we have in research and programs over the last decade.