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Down Syndrome 101 for Educators

Friday, November 6, 2015

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Orofacial Myofunctional Disorders in Individuals with a Diagnosis of Down Syndrome

boy-bubble-300x200originally posted by Robyn Merkel-Walsh MA, CCC-SLP at talktools.com

 

Presentation of the Problem:

Individuals with Down syndrome are at risk for what is known as Orofacial Myofunctional Disorders or OMD. OMD can impact the oral phase of feeding, oral resting postures and oral placement skills for speech clarity. OMD issues require tactile therapies which include Myofunctional and Oral Placement Therapy (OPT). Myofunctional therapy and OPT are not the same as non-speech oral motor exercises. The purpose of this article is to differentiate the difference between non-speech movements and speech–like movements in treatment for individuals with Down syndrome, and to explore various types of tactile therapies that may help facilitate progress.

What Kind of Therapy Are We Talking About and Is It Evidenced Based?:

The ongoing question in the field of speech pathology is whether or not Oral Motor Therapy is evidenced based. Evidenced Based Practice (EBP) according to the American Speech and Hearing Association is “the integration of best research evidence with clinical expertise and patient values” (ASHA, 2005). There is a misconception that EBP is limited to double-blind studies when in fact EBP is very centered on valuing feedback from the individual receiving treatment, and the clinical data collected in therapy. Not every method in the field of speech pathology has a large sampled, double blind study. For example, there is no proof that mirror aides in articulation therapy, but many therapist and patients report the value of mirror use when learning to imitate speech sounds. In addition no one study can prove, that another study is not valuable. No one study has proven that oral-motor, OPT or Myofunctional therapy is an invalid or unethical therapy method.

Another problem is that Oral Motor Therapy is a very general term that leads to confusion. Pre-feeding exercises, non-speech oral motor exercises, myofunctional therapy, strengthening exercises, swallowing exercises, oral imitation tasks and the use of oral speech tools were all being associated with the term Oral Motor Therapy. Though many therapists and parents see the clinical success of these therapies, there is still controversy in the field about the efficacy of these therapies. This is why in 2010 Diane Bahr and Sara Rosenfeld-Johnson wrote a landmark article in Communications Quarterly, outlining the difference between non-speech oral motor exercises (NSOME) and OPT. The major difference noted, was that NSOME are movements which are not related to speech sounds, while OPT therapy only includes speech-like movements (Bahr & Rosenfeld-Johnson, 2010). OPT follows the principles of Van Riper’s Phonetic Placement Therapy (PPT), and uses tactile cueing to help individuals who cannot respond to visual-verbal treatment cues (Marshalla,2008). The use of therapy tools in speech pathology is certainly not new according to Pam Marshalla (2012) , and therapists admit that even after hearing that oral-motor exercises may not have research to support their use, they still use them in practice (Bahr , 2011).

Over thirty-five years ago, The International Association of Orofacial Myology (IAOM) was formed, and has addressed the need for regulated educational opportunities and standardized college level credentialing of therapists to treat OMD (Snow, 2015). Experts in myofunctional therapy understand the connection between the airway, dentition, and tongue posture, swallowing and speech clarity. The Myofunctional Clinic of Bellevue has compiled an excellent list of EBP to support the use of myofunctional therapy with a variety of individuals (Bellevue, 2015). Gommerman & Hodge produced a study analyzing the effectiveness of myofunctional therapy and sibilant production and found that articulation therapy was achievable in only four therapy sessions after a tongue-thrust disorder was remediated in myofunctional therapy (Gmmerman & Hodge, 1995).

Oral-motor therapy has never been debated in cases of oral phase dysphagia or for tongue-thrust disorders; therefore it seems questionable while some experts in the field continuously debate the ethics and efficacy of these practices, especially in the Down syndrome populations, where we can predict issues with OMD. For example, Caroline Bowen has a publication on her website indicating that NSOME are unnecessary for children with Down syndrome (Bowen, 2015). The rationale is that to gain speech, speech must be worked on. There is some misconception that speech-language pathologists (SLPs) who work on OMD issues, are not working on speech, and this is not the case (Merkel-Walsh & Bahr, 2014).

The Importance of Treating Of Treating Orofacial Myofunctional Disorders in Down Syndrome:

When a baby is born with Down syndrome, there are some factors we assume to be true about craniofacial development, feeding and swallowing. In 1997, Sara Rosenfeld-Johnson identified the myths of Down syndrome. This included: a high narrow palatal vault, (Myth #1), tongue protrusion (#2), mild to moderate conductive hearing loss (#3), chronic upper respiratory infections (#4), mouth breathing (#5), habitual open mouth posture (#6), and finally, the impression that the child’s tongue is too big for its mouth (#7) (Rosenfeld-Johnson S. , The Oral-Motor Myths of Down Syndrome, 1997) . The reason Sara referred to these issues as myths, is because clinical evidence suggests that these issues can be prevented and /or improved by therapeutic intervention. For example Sara Rosenfeld-Johnson presented case studies at the American Speech and Hearing Association annual convention, highlighting improvements in an adult patient with Down Syndrome with one month of OPT ( (Rosenfeld-Johnson 2014).

 

Despite the myths, clinicians are often faced with a variety of oraofacial myofunctional challenges when treating individuals with Down syndrome. This includes but is not limited to: poor speech intelligibility, tongue thrusting, bruxing / teeth grinding, oral-phase feeding deficits and inappropriate oral habits (Bahr , 2001). It is important to treat these issues in conjunction with language-based speech therapy.

 

Since there is some confusion regarding terminology it is important to understand various types of OMD therapies. We can categorize therapuetic interventions into four categories:

 

  1. Pre-feeding/ Oral Sensory-Motor Therapy: These are exercises introduced to improve jaw, lip, and tongue movements as a prerequiste for safe, effective nutritive feedings. A pre-feeding plan is always one step ahead of a feeding plan. For example, if the goal is spoon feeding, the infant is receiving the primary source of nutrion from the breast and /or bottle, while the therapist works on the sensory-motor skills needed for spoon feeding (Overland & Merkel-Walsh, 2013). It is important to understand the oral-motor developmental hierarchy and age related normative data when designing a pre-feeding treatment plan.

 

 

  1. Feeding Therapy : Therapuetic feeding may focus on the oral phase of feeding, and/or the pharyngeal phase of feeding. Feeding therapy involves manipulation of the placement of food in th emouth, designing the tastes, temperatures and tastes to work with, and is always considerate of safety. Feeding therapy often involves the choices of therapuetic feeding equiptment , including adaptive seating, as well as therapuetic spoons, cups, forks, and straws (Overland & Merkel-Walsh, 2013).

 

  1. Oral Placement Therapy: OPT does not include NSOME. OPT is a specific therapy which involves tactile cueing in order to faciliate the articulatory postures required for precise speech sound production. OPT follows the principles of Van Riper’s Phonetic Placement Therapy in which: a therapist faciliates an oral posture with a therapy tool, drills this posture through repetition, and slowly fades out the tactile cue once the individual can produce the sound accurately (Bahr D. & Rosenfeld-Johnson, 2010)

 

  1. Myofunctional Therapy: Joy Moeller, a dental hygenist who specializes in myofunctional disorders, defines this therapy as a program used to correct the improper function of the tongue and facial muscles used at rest, for chewing and for swallowing (Moeller, 2008). Myofunctional therapy is essentially a combination of pre-feeding, feeding, and OPT. Dentists, lactation consultants, otolaryngologists, dental hygienists and SLPs treat myofunctional disorders. Myofunctional therapy often involves a hierarchy of exercises, which helps an individual simultaneously correct oral-rest posture, oral habits (e.g. thumb sucking) swallowing and speech sound production (Merkel, 2002).

Individuals with Down syndrome often may require all four types of tactile therapies since they may often present with feeding and speech issues. The problem remains, that many universities are not teaching these methods to clinicians, and families are struggling to find the services (Pierce & Taylor, 2002). In order to understand how these therapies can faciliate improvement, let’s look at some orofacial myofunctional issues associated with Down syndrome:

 

PROBLEM Activity Tactile Intervention
Low jaw posture and tongue protrusion during oral rest posture Therapist can work on facilitation of lip closure by placing a Jiggler tool in between the lips to facilitate lip closure. (Overland & Merkel-Walsh, 2013). Pre-feeding
Reversed swallowing pattern/tongue thrust Therapist engages client in therapeutic straw drinking to facilitate jaw stability, lip rounding and tongue retraction. (Rosenfeld-Johnson S. 2009). Feeding

Myofunctional

Teeth grinding Therapist uses appropriate biting activities, chewing, appropriate mouthing activities, and massage techniques (Bahr, 2001). Therapist implements a gum chewing program to facilitate an appropriate replacement for teeth grinding (Rosenfeld-Johnson, 2009).

 

Pre-feeding

Feeding

Myofunctional

Interdental lisp Therapist implements activities to superimpose lip closure with tongue retraction in order to improve strength and dissociation of the musculature, such as therapeutic horn and bubble blowing (Rosenfeld-Johnson, 2009; Merkel, 2002). The tools will be faded when the oral placement skill is achieved and the individual can produce the target sound without the use of the tactile cue/tool.

 

 

 

OPT

Myofunctional

 

Conclusions:

 

Individuals with Down syndrome may present with orofacial myofunctional challenges. While some therapists argue that non-speech oral motor exercises are not appropriate for these individuals, experts in tactile therapies have worked diligently to differentiate NSOME from OPT. There is Evidenced Based Practice is not limited to double blind studies and includes client feedback and therapeutic outcomes. Experts in OMD have provided evidence over the years to support the use of tactile therapies, and the relationship between swallowing and speech. Practicing clinicians are providing more case studies in the research base and most importantly, individuals who have engaged in OPT have positive reports of progress. There is no doubt that more studies need to be performed, and experts in OPT are hopeful to have more support from universities to perform larger group studies.

 

Robyn Merkel-Walsh MA, CCC-SLP is a speech-language pathologist with over 20 years’ experience devoted to oral motor, feeding and OPT. She works full time for the Ridgefield Board of Education, in addition to her private practice and affiliation as a lecturer for TalkTools ®. Robyn is the Acting Chair of the Oral Motor Institute and has recently presented a poster session at the ASHA convention. You may contact Robyn at robynslp95@aol.com.

 

Bibliography

ASHA (2005). Evidence-based practice in communication disorders [Position Statement]. Retrieved from asha.org: http://www.asha.org/policy/PS2005-00221/

Bahr, D. & Rosenfeld-Johnson (2010). Treatment of Children With Speech Oral Placement Disorders (OPDs): A Paradigm Emerges. Communications Quarterly, vol. 31 no. 3 131-138 .

Bahr, D. (2001). Nobody Evert Told Me (or my mother) That ! Arlington, TX: Sensory World.

Bahr, D. (2011, September). The Oral Motor Institute. Retrieved from The Oral-Motor Debate Part I: Understanding the Problem: www.oralmotorinstitute.org/mons/v3n1_bahr.html

Bellevue, M. C. (2015, March ). Sudies showing efficay of orofacial myofunctional therapy. Retrieved from Myofunctional Clinic of Bellvue: http://myofunctional.com/internal/resources.html

Bowen, C. (2015, January 13). Controversial Practices in Children’s Speech Sound Disorders – Oral Motor Exercises, Dietary Supplements, Auditory Integration Training . Retrieved from Speech-Language Therapy.com: http://www.speech-language-therapy.com/index.php?option=com_content&view=article&id=28:controversy&catid=11:admin&Itemid=122http://

Gommerman, S.   & Hodge, M.M. (1995). Effects of oral myofunctional therapy on swallowing and sibliant production. International Journal of Orofacial Myology, 21:9-22.

Marshalla, P. (2008, April). Oral Motor TReatment VS. Non-Speech Oral Motor Exercises:Historical Clinical Evidence of “Twenty-two Fundamental Methods”. Retrieved from The Oral Motor Institute.: www.oralmotorinstitute.org/mons/v2n2_marshalla.html

Marshalla, P. (2012). Horns, whistles, bite blocks, and straws: A review of tools/objects used in articulation therapy by Van Riper and other traditional therapists. . Retrieved from oralmotorinstitute.org: www.oralmotorinstitute.org/mons/v4n2_marshalla.html

Merkel, R. (2002). Systematic Intervention for Lingual Elevation . Tucson, AZ: TalkTools.

Merkel-Walsh, R. & Bahr, D. (2014). Ages & Stages. Retrieved from What evidence-based, oral sensory-motor treatments are effective for speech disorders?: http://www.agesandstages.net/qadetail.php?id=31

Moeller, J. (2008). What is myofunctional therapy ? Retrieved from myofunctional-therapy.com: http://www.myofunctional-therapy.com/what-is-myofunctional-therapy.html

Overland, L. & Merkel-Walsh (2013). A Sensory -Motor Approach to Feeding. Charleston, SC: Talk Tools.

Pierce, R. & Taylor, P. (2002). Rationale for including orofacial myofunctional therapy in universaity training programs. International Journal of Orofacial Myology., 24-34.

Rosenfeld-Johnson, S. (1997). The Oral-Motor Myths of Down Syndrome. Advance Magazine for Speech-Language Pathologists.

Rosenfeld-Johnson, S. (2009). Oral Placement Therapy for Speech Clarity and Feeding. Charleston, SC: TalkTools.

Rosenfeld-Johnson, S. (2014). Using Tactile Cues to immprove speech clarity in the adult rehabilitative setting. ASHA Convention. Oralndo , FL: TalkTools. Retrieved from Talk Tools.

Snow, M. (2015, March 13). International Association of Orofacial Myology. Retrieved from IAOM: http://www.iaom.com/history.html

 

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What I’d Like you to know about my daughter with Down syndrome

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

i’d like to introduce you to Ainsley. she is six years old. Ainsley loves to dance, swim, play with her dolls, run around with her friends, and wrestle with her brothers.  she loves roller coasters, making friends, and school. she attends kindergarten.  Ainsley has down syndrome. down syndrome doesn’t define her.  she is not a down syndrome girl.  she is a little girl, who just happens to have down syndrome.  really, she does anything and everything any other little girl her age might do!

Ainsley is one of my daughter’s best friends. i remember distinctly the first time we met Ainsley and her mom at the park years ago. since that time we have attended preK together and are now in kindergarten in the same class. Ainsley and her family have opened our hearts and taught us so much about friendship, love, and awareness. i am forever grateful for the things i have learned and the way that my heart has been touched by Ainsley! i recognize that having a best friend with Down syndrome is a gift not every child (or parent of that child) is blessed to experience. because of this, i wanted to share some of our experience as well as interview Ainsley’s mom with questions that would help others to understand different aspects of having a child with down syndrome.

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

now i’m sure this will embarrass her, but i’ll say it anyways – Ainsley’s mom is one of those people you meet that just ooze goodness. she is the most loving, kind, patient, thoughtful, and giving people i have ever met. but not in a way that makes you feel like a bad mom because she is invincible or perfect – just in a way that makes you grateful to be her friend and learn from her… human, but a really really awesome one.  as much as my daughter and i have been blessed by Ainsley, i have also been blessed to know her mom. she is a fierce advocate, but also a patient teacher. she is understanding of those who don’t know much about down syndrome, and an open book about her experiences. here are some of the things she shared in our interview….

What do you want people to know about Ainsley?

‘Ainsley is more alike than different. She is like most 6 year old girls. She loves to dance, to swim, to play with her dolls, to play princess dress up, to run around with her friends, to wrestle with her brothers. The differences she has aren’t really that different. They are not these incredible boundaries that set her apart from other kids her age.  She does have some delays, and it takes her a little longer to do things.  But a lot of kids have delays to a degree. The great thing is, a bit of patience goes a long way with this little girl.  Ainsley has a tremendous drive to succeed and while it does take her a little longer, she does eventually get there. I have two other kids- two boys- and I don’t give Ainsley any special treatment.  I treat her just how I would treat them. What I would say to others is to do the same.  Ainsley is just like any other 6 year old girl and I would like her to be treated as such.

In short, what I really want people to know about Ainsley is that Down syndrome doesn’t define her.  She is not a Down syndrome girl.  She is a little girl, who just happens to have Down syndrome.’

What is it like being a mom of a child with Down syndrome?

‘Being a mom to a child with DS is just like being a mom to any other kid. There are good days, amazing days, but also the difficult ones that leave you frustrated and discouraged.  Parenting is hard in general; being a mom is being a mom. With Ainsley, it might mean a little more patience, more research on therapies, or better time management juggling those therapies, maybe extra hours spent on homework.  But every mom has some kind of issue, some kind of puzzle they have to solve in their day to day’

What have been (or are) the hardest moments for you as a mom to Ainsley?

‘This week, Ainsley got to bring home the classroom bear and had to write and draw a picture about what they did together that day.  Ainsley came home over the top excited about having Corduroy and she wanted to sit down and draw her picture of them playing at the park.  She ended up getting frustrated because her picture wasn’t even close to what she wanted it to look like, and it was nowhere near the level of her peers.  She is 6, and fine motor activities are probably one of the hardest things for her to do.  While she has made tremendous advancements and tries very hard, she still cannot legible write her name; for most it would look like chicken scratch.  Its moments like these that break my heart.  She knew what she wanted to write, told me what she wanted to write, but despite all of her efforts she just couldn’t make it happen, because  due to her hypertonia, she doesn’t yet have the hand strength and coordination to make it happen.  There have been a lot of big things, but really it’s these little moments, where she knows that she is a little different that are the hardest for me.’

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

How do you balance family life and other children with a child who has special needs?

‘We try to treat Ainsley just like our other kids, but she does get a lot of extra attention when it comes to therapies and the extra time we have to spend to work with her on any number of things from homework to role playing what to do in a new situation (sometimes she’ll get extremely uncomfortable under unfamiliar circumstances).  It could be a very slippery slope making the day to day centered around Ainsley, and so we actively have to try to get out of that mindset.  First, in a lot of these situations, we try to incorporate the other kids as much as possible.  Ainsley learns more from her bothers than she does from us, so we make them the teachers, and include them as much as possible.  They enjoy it and it dilutes pure focus on Ainsley and makes it more about the family.

Second, we make a conscious effort to spend one on one time with our other two kids.  Owen, the oldest, gets a lot of individualized attention from me and my husband. Whether it is a mother-son date, or cubscouts, or staying up a little late to watch the world series, we make sure he as things that are just for him. And for the youngest, my mornings are all about me and him as the elders are in school.

In the end, what we try to do is to make sure each of our kids feels special, loved and a part of our family.  Each one of our kids brings something special to our family and we are blessed to have them in our lives’

How has having Ainsley as a sister shaped your boys?  

‘We have two boys Owen, the oldest, and Wyatt the younger.  Wyatt will be 3 in December -right now they are little buddies; they play together, learn from each other, and have fun together! Owen, has the biggest heart, a kind soul, and is a very compassionate boy.  He was only 18 months when Ainsley was born and to this day is still one of her biggest cheerleaders.  He grew up being a part of Ainsley’s therapies. He watched how difficult it was for her to do things which came easy to him, and at a young age was able to understand that not everyone does things at the same pace, that everyone has little differences and that that is okay. We hope he takes this notion with him for the rest of his life.  We are already seeing signs of this in him in how he acts with his peers – he is someone who is friends with everyone and very accepting of other kids no matter what the circumstance’

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

What are your hopes and dreams for Ainsley? 

‘My hope is to watch Ainsley walk across the stage at High School Graduation to receive her diploma with all her friends that she has grown up going to school with!  To have teachers, educators, and parents believe in her to be included through the school years. Long-term, I want to see her live a happy life and give back to the community!  I want her doing the things she loves to do.  We would love to see her go to college, get married and live on her own.’

What are your favorite moments, memories, and milestones with Ainsley? 

‘Ainsley has been a fighter since birth.  She was born at 30 weeks weighing only 3 pounds. On Christmas Eve 2008, after spending her first 98 days of life in the NICU we were told we would finally be able to bring our little girl home.  It was the greatest Christmas present ever.

Ainsley has essentially had a menu of therapies since she was 4 months old –physical, feeding, occupational, speech – it’s a long list.  She has to be taught how to do many things we take for granted.  It might take her a little longer to do them but she can and will do them.  Her walking for the first time was truly an amazing milestone.  Walking is millstone for all kids, but it was a long road for Ainsley to get there.  So when our little girl walked across the room for the first time at 2 years 8 months she had everyone in tears!

Another one of my favorite and most recent moments is when I realized Ainsley had a group of girlfriends!  I remember being scared when we were first told our daughter had Down syndrome that she wouldn’t have a group of friends, she wouldn’t be invited to playdates or birthday parties.  Last year, Ainsley started Transitional Kindergarten and she was fully mainstreamed.  I remember every day I would hold my breath as I sent Ainsley to school, praying that she had a wonderful day and had some friends.  As the weeks went on, I got to know the kids that Ainsley would come home talking about and of course this was the start of Aubrey’s and Ainsley’s friendship.   As the year went on, I watched Ainsley play with a group of girlfriends that truly accepted her for who she is.  They all would play together almost every day after school and she was invited to playdates, parties, and we ended up spending a lot of the summer together with swim playdates.  She even started dance class with some of the girls.  I know all parents worry about their kids, and whether or not they find a group of friends.  We too have that worry for our sons, but with Ainsley and the worry is hard to describe, it’s just greater.   She has serious boundaries in her speech and her physical capabilities, and it could be really easy for kids to just pass her by.  But we were and are truly blessed with this group of girls. It’s amazing watching all of these girls interact and truly love and accept Ainsley, and always brings tears to my eyes and so much joy to my heart!’

Princess Party Dress up

(photo from the princess party for all the TK friends!)


as aubrey’s mom all i could want for her is to be kind, loving, and patient. aware yet accepting. for all of the times and ways i have tried to teach her this, i don’t think i will be able to claim any of it. Ainsley has changed her heart and made her a better person. as i watch them laugh and run and play together my heart is so full of gratitude for sweet Ainsley and her family. she has taught us another dimension of love and friendship.

this little group of girls in the photo above are just that – best friends. some are tall, some are short, some have curly hair, some have straight. some wanted to be belle and others cinderella (frozen was not out yet or this photo would look a bit different i’m sure lol). some play soccer, some do dance. while Down syndrome is something that makes Ainsley different, she has taught our girls that it is as irrelevant to her ability as a friend as those other differences i listed. they laugh together. they play together. they learn together. they make memories together. they hug saying good bye. they celebrate their differences.

How can parents teach their children about Down syndrome? What resources do they have? How can you teach your child to be a good friend to someone with Down syndrome?

parents lead by example – so set one of acceptance and understanding. here are some great resources to become knowledgeable about Down syndrome:

DS Information Alliance  |  National DS Society  |  National DS Congress

there are also amazing videos out there! watch them with your kids!

here are some of my favorites…

this first one is GREAT for young kids! this is the one that Ainsley’s mom shared with the preK and kindergarten classes to help them understand about Down syndrome. it is based off a book and real life friends isabelle and charlie. my favorite part is that it is a true story written by charlie – and the video is narrated by him! its adorable!

Screen Shot 2014-12-15 at 9.09.58 AM

 

this is a great video for elementary – high school kids and talks about the bond between several sets of friends and gives lots of advice on how to be a friend to someone with Down syndrome

Screen Shot 2014-12-15 at 9.11.34 AM

 

‘we are more alike than different’ this is a sampling of the short videos that were made for this campaign. it is a great message and features several adults with Down syndrome talking about their interests, hopes, lives, and dreams!

Screen Shot 2014-12-15 at 9.12.55 AM

 


 

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

thank you for your friendship sweet Ainsley! we love you!

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