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Early Intervention Speech Therapy

Childhood Apraxia of Speech Interview, Part 2

Published January 30, 2009 12:22 PM by Stephanie Bruno-Dowling
Tuesday's post highlighted Sharon Gretz, the Founder and Executive Director of CASANA (Childhood Apraxia of Speech Association of North America). Today's post discusses the services CASANA provides, as well as possible causes and therapeutic suggestions for treating apraxia effectively in young children.

Stephanie: Please tell us more about CASANA and what services it provides and offers families.
Sharon: CASANA is a 501c3 public charity, governed by a board of directors and which provides multimedia information on CAS to families, professionals, and other members of the public. We do this through our Apraxia-KIDS website, the largest repository of apraxia information anywhere that receives 400,000 page views each month.

Several years ago, CASANA cosponsored the first childhood apraxia of speech research symposium with 25 international researchers.  Additionally, the ASHA CAS Ad-hoc Committee Technical Report identified that the "limited evidence on treatment efficacy is one of the most clinically pressing needs in CAS research."  In response to the ASHA Report, CASANA established its CAS treatment research fund to encourage pilot research studies in CAS treatment.  We have just awarded our first treatment research grant and hope to award at least one in 2009.

Stephanie: Earlier we talked about what worked for your son, have you since seen other helpful methods emerge and be implemented over more recent years?
Sharon: The overarching principles needed for speech therapy for children with CAS are called the principles of motor learning.  In a nutshell, one applies those principles to speech motor learning and these appear to be what benefit the children, regardless of the particular "name" for the method.  The following variables are what is important:

  • Frequency and intensity of practice opportunities. Skilled motor activity is acquired through repetitive practice.  The SLP needs to maximize the number of practice trials in each therapy session and those sessions need to be frequent. Incorporating parents as therapy extenders is also ideal so that the child is practicing throughout their day.  Parents need mentored in order to understand how and when to elicit practice.  Observation of therapy sessions by parents is key!  This is how they will know when to try to elicit a speech production from their child, how to get multiple repetitions, and when to back off.  They will know not this by hearing a summary of what happened in therapy.
  • Type of practice. Children with severe apraxia of speech would start with a small set of core functional words.  When they practice one word over and over, then another word over and over that is considered mass practice and early on this may be helpful to get more success going.  When the child practices their set of words, randomly, over and over this is called distributed practice and overall this is felt to lead to the best generalization of motor skill.  So children severely impaired would benefit from both types of practice.
  • Type, amount, and schedule of feedback. Early in therapy, the SLP who follows understands the principles of motor learning is likely to give pretty immediate feedback to the child about their accuracy and about their performance, i.e.: "Yes, that was it, you got your lips to pop"  "No, you need more air in your cheeks. Puff up your cheeks, lips tight and pop them."  However, as the child's speech motor system improves less immediate and direct feedback on performance is provided so that the child's system does not become dependent on YOUR feedback but the child's own system begins to take over and they can "feel" and hear when they have been successful.  Visual, tactile, and verbal cues and feedback are very important, but equally important is cue fading.

Various methods exist and use the above principles for the most part.  So whether it is Dynamic Tactile Temporal Cueing (a variation of what some may know as Integral Stimulation) or the Kaufman Method (a variant and expansion of Successive Approximations) or the PROMPT Method or the Multi-sensory Method, what seems to be successful is that the principles of motor learning are incorporated by the clinician and that the clinician is actually working directly on speech production.

Stephanie: As a professional, what would you like to say to both parents and therapists regarding apraxia treatment?
Sharon: Well, truly, after speaking with hundreds of parents and SLPs in the past decade or more, please, please learn about appropriate speech therapy methods.  I switch between sad and angry when I continue to hear stories about children with significant apraxia who are receiving a cursory amount of speech therapy, not nearly the frequency and intensity that is most likely needed.  I know we are all stretched by resource limitations, but let us dedicate ourselves to advocate for what these children need. 

There is no way around the reality that these are the children that will need the individual, direct speech therapy.  The ASHA Technical Report suggests three to five times weekly of individual therapy is appropriate for children with moderate to severe apraxia.  The good news is that when this help is delivered using appropriate treatment methods, many, if not most of the children make great strides and over time need less individual therapy.

There is a delicate relationship "dance" that both parents and SLPs need to learn as part of the treatment process.  Parents need to learn to place trust in their child's SLP while still using their discerning judgment, and the SLP must be dedicated to earning the parent's trust while being honest about the limits of their professional knowledge and experience with this population.

To the professionals, please do not expect to find the "answers" for how to provide therapy to these children in a box that you buy from a catalog.  Therapy materials are just tools that can be helpful when applied by a knowledgeable clinician. Take the time to learn about motor learning principles which undergird most appropriate treatment methods for CAS.  

Finally, this is going to be hard work, for the SLP, for the parent and most of all for the child.  There is no quick fix.  SLPs, you will need to expend more time and effort on this child.  Parents, you cannot expect that the SLP alone is going to "fix" the problem. You have to be involved and help with practice and therapy carry-over. After experiencing so much failure in their speech attempts, that precious child needs to have faith in the process and in both of you.  However, keep hope and faith that your hard work will pay off.   The sheer joy of seeing the progress of which the children are capable is simply inspiring!

Stephanie: I have recently heard that there has been an increase in children diagnosed with apraxia. Have you seen this in your work and do you have any thoughts on why we may be seeing this?
Sharon: You know, this is hard to determine because of limited research, but at least a number of large outpatient facilities are reporting that they are seeing more kids with apraxia of speech.  We cannot be sure, for example, if awareness has increased and thus more children are being appropriately identified or if there are actually more children with the disorder.  I would like to think that CASANA has played a major role in increased awareness in the proper identification of these children.  However, we also know from research that children are both misdiagnosed as having apraxia when they really do not (false positive) and that the diagnosis is also missed in children who really do have it (false negative).  

While research and attention has progressed in the last decade it is far from complete and agreement of the core characteristics of apraxia is still being refined.  Drawing from the ASHA Technical Report on CAS, possibly the key characteristics for differential diagnosis that seem to be rising to the fore and to which there is some consensus among researchers include:

  • inconsistent errors on consonants and vowels in repeated productions of syllables and words;
  • lengthened and disrupted transitions between sounds and syllables; and
  • inappropriate prosody, especially stress

I'd like to emphasize again that every child with limited or unclear speech does not have apraxia!  However, apraxia should be considered and appropriate evaluation, including a motor speech exam, should occur in order to rule apraxia in or out as a primary explanation for the child's speech production deficits.

Stephanie: I have also heard that there seems to be a link between autism and apraxia in some children. What has your experience been in this area?
Sharon: There are certainly some children who have both autism and apraxia, though we do not currently know how many children with autism may also have apraxia. Unfortunately, we do hear of situations where the child does have apraxia and this is eventually determined but the child's speech problems had been attributed to autism with no consideration as to whether or not there could be motor speech involvement.  

It can be difficult to make a determination when a child with autism is essentially nonverbal and is unable to cooperate with a motor speech exam.  Every nonverbal child with autism does not have apraxia!  But some may, and so it is worthwhile that SLPs be thorough in their evaluations and be sure to consider motor speech disorder in any child with significant speech production issues.  

It is not just with autism that apraxia of speech can coexist.  The same can be said of children with Down syndrome who also have apraxia of speech.  Quite often we have heard of limited intelligible speech being attributed to cognitive deficits when motor speech was not ever evaluated or considered.  It is always worth considering and investigating whether a child has a motor planning or motor execution aspect to their speech difficulty.

That said it is also important to remember that each additional diagnosis makes treatment all the more challenging. Just because a child with autism has apraxia does not mean you abandon working on communication, language, and social relatedness skills in favor of apraxia type therapy nor should the professional ignore motor speech approaches that would help with speech motor planning skills.  In these situations, careful planning needs to occur to assure that all aspects of the child's speech, language and communication deficit are addressed in therapy.

Another related issue especially for early intervention professionals is that just because a child has limited verbal skills does not mean they have autism!  We have also seen children diagnosed on the autism spectrum who did not have autism.  They could not speak due to severe apraxia and secondarily developed some behavioral characteristics from their frustration or had some co-existing sensory issues or had more overall global apraxia that made manipulating toys and their environment very difficult.  We have also seen kids diagnosed as having CAS who really have autism, not apraxia!  We need to become very knowledgeable about teasing out the differences and subtleties that exist!  It can be very trying on the families who are struggling so hard to help their children.

Stephanie: Sharon, I would like to thank you for all the incredible work you have done for our field, as well as for children and families dealing with apraxia. It has been a delight to speak with you. With all the work you have done in apraxia research and education, what is your hope for the future and for all those faced with the diagnosis? 
Sharon: Obviously, the greatest hope is to understand the causes of apraxia and to either provide effective treatment at the earliest possible moment or to determine a cure or prevent the disorder. Awareness and understanding of the challenges these young people face is very important to their future.  I dream about teachers who understand, friends who understand, physicians who understand... 

I would hope that sources such as private health insurers, government funding entities, and school systems would commit to providing the financial resources that can support the outcomes that we know are possible.  I just see it as an investment.  We know about the potential cascade of future ramifications when a child has a speech sound disorder like CAS.  We know that we could prevent some of those negative ramifications through early, effective treatment.  It is my dream that each child will receive the help that he or she needs and requires. 

Our slogan is:  Every child deserves a voice, and whenever possible, the one that is their very own.  While this speaks to their speech capacity, it really means so much more.  Children with apraxia deserve to be heard, understood and appreciated as well as feel their own personal power through self expression.  Communication is perhaps the most important of all human qualities.  If a child has the ability to develop intelligible speech, they should be given that opportunity.  This is my passion and this is what CASANA'S work is about each and every day! 

Sharon and I both hope that you have found this interview informational and advantageous. Please write in and share any feedback YOU have regarding this week's interview and/or YOUR experiences with apraxia.

More information on CASANA's work is available at www.apraxia-KIDS.org.

25 comments

I always knew something was wrong with my son's speech when he didn't follow the same speech patterns as his older brother.  He has recently beem diagnosed with Apraxia at age 3 1/2, and that was from taking him to a private speech therapist.

There appears to be very little public support in New Zealand (NZ) for these children, with the possibility of a SLP being funded to see my child every fortnight.  From reading and researching it appears these children need more intensive speech theraphy with a SLP from at least 4-5 times a week.  

In addition there appears to be very little literature or other resources available in NZ on Apraxia.

IT has been fantastic finding this site, and I have learnt a lot in the past couple of weeks.  

It is a pity I can't attend the conference coming up.  I was wondering if there was any chance of getting a copy of the conference notes?, I am happy to pay of course.

Kind regards

Lauren

Lauren, Parent June 9, 2011 5:23 AM
New Zealand

I have just taken notice that my son has "Apraxia". Fortunatly he has the weakest form of "Apraxia". He has two years in speech therapy. But he should be in kindergarden by now. Would it be in the best intrest to send him to Kindergarden? Can you please help me?

Norma April 8, 2011 6:43 PM
Patterson CA

Please I need help. My grandaughter has apraxia and I cant seem to find any help. Oh sure she has an IEP on paper only, the school says they follow it but that is not the truth. I need an advocate to help us when we go to school, so they will stop the game and start teaching our little girl. No matter where I go for help no one can help. I just dont know where to turn she is 10 and she needs help. We live in Okeechobee Fl. HELP.

Diane Barker, medical records January 14, 2011 7:09 PM
okeechobee FL

I have a 10 year old son who has Down's Syndrome and severe Apraxia. He is pretty much non-verbal. His speech therapist is looking at getting a talker. I am getting desperate as what more to do to get him to talk

Wendy June 18, 2010 12:49 PM
Butte MT

My 15 year old son has Down Syndrome and Speech Apraxia.  He is nonverbal for the most part, and I'm just wondering if there's still hope for him to overcome the Apraxia after all this time.  Does anyone have a success story to share about a non verbal older child who learned to talk?

Brenda May 25, 2010 11:13 PM
New Market TN

Our grandson is diagnosed with Apraxia.  Is there any support group in the Port St. Lucie, Fl. area?  He has problems in school when confronted with new material.  He is in first grade.  We are concerned about his further progress in school, particularly when it comes to taking standardized tests which are used as a basis for promotion.

Helen March 26, 2010 11:38 AM
Palatka FL

I am also so grateful to Sharon for starting this cite. I have three kids, first one was an early talker. The second child was diagnosed with a severe phonological speech disorder at age 3, she is now 7 and still in speech therapy. Due to her speech disorder, she has social delays, history of frequent melt downs etc. I learned everything I could on her disorder, however it could not prepare me for my youngest, son, diagnoses of Apraxia at age 3. I am glad that I was able to see his "delay" early on and my daughters SLP noticed it very early. He started speaking in only vowel sounds and started therapy at age 18 months, when motor planning issues were mentioned at age 2, I also googled it and found so much information that I felt confident in asking questions about Apraxia and though he was too young to know for sure it was suspected, so I researched it more and found this site and was so grateful to find so much information and support from other parents. when getting the final diagnosis of moderate to severe Apraxia I cried for a while, it was scary, I didn't know how I was going to do this, two kids with severe speech disorders and what about my oldest..will she get shuffled off to the side.

however, because of the information, support and stories, from other parents and this cite I just keep going. Now my son is almost 4 and has made amazing progress, but still has lots of work to do, my daughter is almost 100% intelligible (working on R) and my oldest daughter is becoming a mini SLP cueing her brother and helping me with play speech time at home.

So, thanks so much :)

Michelle Milliron, Mom January 26, 2010 11:58 AM
Loveland CO

As some of you veteran blog readers may remember, last year I interviewed Sharon Gretz, the founder and

January 26, 2010 10:01 AM

I live in the UK too, and have a four year old daughter with severe CAS. She has no words at all, but a 'home' and 'moo' - relating to the moon or what a cow says! - are evolving, as are 'pop' and 'purple'. Some vowel sounds beginning to be fairly consistent, also some consonants. The NHS are very unsupportive, we haven't even been assessed by them yet. We are on a waiting list and have been for over a year! It's heart breaking to be so in the dark, having no idea what to do or what is wrong. We have had a 6 week course of weekly therapy for half an hour each time with the NHS. It's the wonderful private SaLT that has helped us and given us an idea of what might be wrong and what to do about it. This site has given me hope for the future, that one day my little girl will be able to express herself and - well just a 'Mummy' would make my life at the moment! Hayley - if you can find a way, even if it means begging (my Mother-in-Law and Mum help to pay for private therapy once a week!) could you try and get a private professional to give you some pointers? I know how you feel!

Victoria Gultnieks January 11, 2010 3:32 PM
Leeds

Every few days or so, I read through recent comments posted throughout the blog and attempt to address

October 23, 2009 11:11 AM

I just found your website today.  My daughter just turned 4 and  has not been diagnosed with CAS formally.  Her speech therapist is using the same techniques that she would with a child that has been diagnosed with CAS.  I've been told that she is too young to be tested, but it could be a possibility.   I feel so lost.  I feel as though there is more that I can do for her.  Right now, I am her voice.  It breaks my heart when children walk up to her and ask her a question and she doesnt respond with much but a "hi" and a smile.  I live in Dallas County are there any support groups around here?  I feel like there is more that I could/should be doing for her.

Catherine, Credit - Exec Assistant October 1, 2009 4:53 PM
Dallas TX

I am looking for a family support group for my great-grandson who lives in tucson,arizona.He is six years old and has speech apraxia.My grand-daughter and daughter have not had any luck in finding a support group they could meet with. I am hoping you can help me Thank YOU.

sharon September 17, 2009 4:03 PM
bakersfield CA

My 3 year old little angel boy has CAP.  His speech pathologist is confident that while others may think he is autistic, that is just

apraxia alone.  His Pediatrician has always said he wasn't autistic as well. He says Mama, and a few other small words. He does alot of imitating sounds. Lately my husband and I have noticed he opens his mouth really wide as if he is trying to get some sounds to come..sometimes you can see him attempting a word but he just mouths it.  I guess I was looking for input on all of the teaching DVDs that are out there.  They are very expensive, and I would buy them ALL in a hearbeat if I knew or thought they would help him improve his language skills.  He has never been a tantrum throwing kid, but lately he has had a few pretty good 15-20 minute episodes.  I think he is starting to get frustrated with not being able to communicate.

He has always been very into books and reading.  Since he can't talk, he has tought himself language through spelling.  

Anyone have any advice or ideas that may help him?

I want him to be able to tell me he loves me-so bad!

Laura, Country Club Mgr September 5, 2009 10:44 PM
Richland WA

I HAVE BEEN LOOKING FOR A SUPPORT GROUP FOR APRAXIA OF SPEECH BECAUSE MY LITTLE BOY WHO WILL TURN 5 ON AUGUST 30TH HAS APRAXIA OF SPEECH AND HE JUST TURN 2 WHEN HE STARTED SPEECH THERAPY. HE HAS IMPROVED GREATLY BUT WHAT I WANT TO KNOW IS HOW LONG DOES IT USUALLY TAKE FOR THE KIDS TO REALLY START TALKING.MICHAEL HAS BEEN GOING TO SEAPCO AT DUNLAP SCHOOL AND HE HAS SPEECH THERAPY THERE. MY QUESTION IS WHAT ELSE CAN WE BE DOING TO HELP HIM WITH HIS SPEECH.THANK YOU DENISE CHALLACOMBE FROM BRIMFIELD,IL

DENISE CHALLACOMBE, CAR DEALERSHIP - SERVICE CASHIER, GREEN CHEVROLET HUMMER August 10, 2009 10:23 AM
PEORIA IL

I've only just found your website & already it is giving me hope I was unsure of finding! My grandson lives with me, as do his parents, hes an exceptionally bright little guy, he just uses so few words, yet he picks up sign language quickly. We've been to

Doctors & Specialists and only just recently have they put a name to what is causing his delay in speech. So of course we've all headed to the internet seeking information & help.  Just what I've seen so far I feel your site may be the place we have been looking for all along. Thank you so much for providing this for those of us out here floundering for a way to help our children. And BLESS YOU!!

Susan, 911-Dispatch - Senor Dispatcher, Falls Co Sheriff July 21, 2009 9:28 PM
Marlin TX

I think you´ve done a great work to spreed knowledge about apraxia of speech. I hope your work will spread to Europe, where this type of organisation does not exist. In Sweden there are a lot of children still not without a diagnos and with the result of not getting correct treatment. I`m a mother of a child with CAS and it´s been difficult to get a diagnos and to get information about this.

I´m studing to become SLP to learn more about CAS, but think that the issue of motor learning is undervalued. The  principles of motor learning in a developmental perspective are not fully understood in todays examine and treatment.

But we struggle on to more knowledge and better treatment for our children and their familys.

Karin, Sweden

Karin, SLP June 16, 2009 5:20 PM
Stockholm, Sweden

I cannot express how our family felt that day our SLP said "your daughter has moderate to severe apraxia."  I did not even know what that was!  Got online immediately and found the apraxia-kids website and can I say the rest is history!  I cannot begin to tell you, Sharon, how you have saved so many kids in this country!  Because of this website, you and the countless parents who have responded to my questions through the listserv, our Brittany is 100% intelligible in her speech!!  I can remember crying one day and wondering if I would ever carry on a conversation with my daughter...EVER!!  Well, that has come to pass and now she is 9 and we go out to lunch and talk about her day!!  What can I say!  You have changed lives.  You and all the people of CASANA empowered me to learn everything I could about this disorder, take that information to my IEP team and teach them.  Because of that, I now have an IEP team who truly understand apraxia and how to help Brittany in the years to come with any learning challenges that come our way!

Thank you Sharon and your CASANA team!!!

Susan Hoyle

Mom to Brittany (now 9)

Columbia, MO

Susan Hoyle March 14, 2009 7:55 AM
Columbia MO

I have followed this website over the years and it is truly amazing how sophisticated it has become. Congratulations for developing a resource that is of so much value to everyone interested in CAS.  I would like to comment on frequency of therapy.  I think far more important than frequency is finding an experienced, proficient SLP.  When progress is slow or non-existent, it is tempting to think that "more is better."  I have been treating young children with motor speech disorders, many with CAS for many years.  I rarely see anyone for more than one  hour a week.  Children with cognition within the broad normal range have all acquired normal speech.  So, parents who can't afford intensive therapy should not be discouraged but focus on the quality and success of the therapist.  

Nancy , SLP - SLP, priv prac, university February 22, 2009 1:29 PM
Seattle WA

Sharon, Fantatic interview! Thanks for all your work  with CASANA & Apraxia-Kids.

susan caretti February 18, 2009 3:10 PM
Pittsburgh PA

It is almost beyond imagination what has come about from Sharon's

founding of CASANA.  I am so grateful, Sharon, that you continue

this work.  This is the most professional and helpful site in existance for dispensing information, support, and updates on current research

in this field.  My family, especially my special grandson, has benefitted

so much from CASANNA, as have so many others.  Thank you so much!

Pat, Sprc Ed Teacher - Retired February 17, 2009 8:55 PM
Moorestown MI

Thank you Thank you.

I remember the day when my son ST stated these words "I think he as apraxia. "I went on line that same night and found you (thank you god). I Cry just think about it. Because of you and the information on the website. I fought for more speech time and my insurance payed for it.  My son was only say two to three words that other could understand. Now he is talking sentences . That most people can understand. He still has a long way to go . But with his fighting heart and his parents and Aprexia.org . HE WILL HAVE A VOICE AND PEOPLE WILL HEAR IT.

Isabelle Kidd, Parent February 6, 2009 3:33 PM
grant MI

If Sharon had never started the apraxia-kids website and I hadn't stumbled across it during a GOOGLE search, my daughter wouldn't be where she is today, verbally, emotionally or academically.

My daughter who was non-verbal at 4 years old can chatter away happily and at 9 years is now being educated in a foreign language. Apraxia-kids doesn't only give hope, but it empowers parents by equipping them with the confidence and information needed to ensure that their children learn to speak and meet their full potential.  Quite simply, Sharon and apraxia-kids change lives and to us parents of apraxic kids, that is a very big deal. Thank you Sharon and the whole CASANA team.

Gill January 31, 2009 5:11 PM
Spain

thankyou, for posting this information. It makes me as a mom to a child with severe apraxia, feel relieved that there are dedicated professionals that really care about our special children. I would truly  like to meet this remarkable woman.  Thankyou again Sharon, from the bottom of our hearts!

Lisa Brown January 30, 2009 10:43 PM
Summerdale AL

Thank you from the bottom of my heart for all the effort that has been put into this website and network. It has helped me immeasurably. I live in a very small town in a rural part of Michigan and there are no support groups of any kind to help deal with this. I have learned so much from this site and not just about my Wills' apraxia. Because of the knowlege I've gained from this site regarding how school systems work I was able to get my older son the dyslexia testing he so desparately needs 2 yrs earlier than he would normally qualify for. I can't tell you how relieving it is to not only read that other parents are coping with the same things that I am coping with but also that the future can still be bright for my son. Thank you, you have been a god-send.

Marne Shanklin, Home - Mom January 30, 2009 10:43 PM
Alma MI

I wish there was someone as well informed and active in the United Kingdom - fighting for the NHS to recognise the necessity for frequent, intensive and specific type of therapy.  Our system has refused to see my child with oral dyspraxia/apraxia until he is three - in 7 month's time and then will offer a week's therapy!  Our insurers rarely cover much therapy in this area.  There needs to be more help for those families that can't afford to go privately for speech therapy - and even more likely, can't find a therapist who knows properly how to treat oral dyspraxia/apraxia.  I think there is a real need for someone like Sharon and this organisation to advocate for these children on this side of the pond - and presumably in many other territories also.%0d%0a%0d%0aCASANA's site, mailing list and information has been amazing and sincere thanks to Sharon for her help and incredible dedication.%0d%0a

Hayley January 30, 2009 7:14 PM
London

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About this Blog


    Stephanie Bruno Dowling, M.S. CCC-SLP
    Occupation: Speech-Language Pathologist
    Setting: Early Intervention in Delaware County, PA
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