Time for Spring cleaning..and NSOMEs+feeding

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It’s almost that time again…well according to Punxsutawney Phil…..on Saturday, February 2, 2013..he predicted that spring will come early.  So for me too..The Speech Mama will be doing some “spring cleaning” on her blog.

Over the last month or so I have been fortunate enough to have connected with some amazing SLPs all over the world via Twitter..and via blogging.  A blog faux pas on my end connected me with Caroline Bowen…but even before that blog post…I had connected with Jennifer Bekins.  And I connected with Jenn because she wrote a blog post in reference to pre-feeding exercises…specific to the one’s I have posted about..the ones I learned about through another company/and speech pathologist.

I’m passionate about the work I have been doing with little ones with DS…and the incredible information (so I thought) I have learned through the many classes I’ve taken…I posted about…talked about and practiced…never knowing on my end that I needed to do some research to find out that these pre-feeding exercises have no EBP…yes peer reviewed results…but no EBP…UGH!

So when Jenn saw my blog post…she wrote one too..here’s the link to it:

http://talk-ds.org/2013/02/14/pre-feeding-excises-for-children-with-ds-a-must/

…and be sure to read my comment back to her..still defending the pre-feeding exercises…because children with low tone..need the exercises to develop their strength…so they can eat better: NOT!   Now read this link from Jenn…about tone..tone does not mean strength….more UGH!

http://talk-ds.org/2013/03/01/does-low-tone-mean-my-infant-will-have-feeding-problems/

 

Okay…so my first connection was with Jenn…and that connection actually had nothing to do with how I connected with Caroline…(I had copied one of Caroline’s blog posts and posted on my blog)…never got permission from her…and once the mistake was brought to my attention…of course I apologized to her on my blog and on Twitter..my innocent and naïve mistake…well I believe was “worth it”…because what I have learned over the past month about NSOMEs and speech  therapy has helped me to grow as a professional.

But these NSOMEs that we were all talking about were in reference to speech..not feeding…and not in reference to feeding children with Down Syndrome.  What about the pre-feeding exercises..are these NSOMEs helpful to children with Down Syndrome…there is no EBP…only peer reviewed and articles supporting according to one SLP I contacted..but I wanted answers…so I emailed Dr. Lof..still hoping to hear back from him and I emailed Dr. Sheppard..hoping to hear back from her…and of course I emailed Jenn…here’s some bio on her from her site:  http://talk-ds.org/about/

Jenn thanks for permission to post about you and write about the email you sent me.

About Jennifer Bekins:

Credentials

MS: Loyola College in Maryland, Baltimore, MD, 2001
BA with Highest Honors: University of Florida, Gainesville, FL, 1999
Certification: ASHA Certificate of Clinical Competence, 2001
Certification: Hanen Certified Clinician, 2006

Publications, Most Recent

Bekins, J. Dreams realized: the gift of Down syndrome. Down Syndrome Pregnancy, February 17., 2011

Bekins, J. Your child’s therapy: Weighing the optionsDown Syndrome News, 2009; 32 (4): 60-61.

Presentations, Past Two Years (More topics available upon request)

  • Bekins, J. and Turner, K.: Fantastic Feeders: Successful Feeding Skills in Children with DS. Presented at the National Down Syndrome Congress Convention; August, 2012; Washington, DC
  • Bekins, J.: Communication Disorders in Later Childhood and Adolescence. Guest Instructor at the University of Cincinnati; May 29, 2012; Cincinnati, OH.
  • Bekins, J.: Communication Disorders in Children with Developmental-Behavioral Disorders. Guest Instructor at the University of Cincinnati; March 6, 2012; Cincinnati, OH.
  • Bekins, J.: Understanding Communication: Children and Adolescents with Down Syndrome, Is my child too old for speech therapy?, and Speech and Children with Down syndrome. Presented at the Greater Richmond Down Syndrome Association Spring Education Conference; March 16-17, 2012; Richmond, VA.
  • Bekins, J.: Understanding Childhood Apraxia of Speech and Down Syndrome.Presented for the Northwest Ohio Speech Language Hearing Association; September, 2011; Sylvania, OH.
  • Bekins, J. Reaching for the STARs: Speech Therapy and Research Working Together. Presented at the National Down Syndrome Congress Convention; August, 2011; San Antonio, TX.
  • Bekins, J. and Carroll, G.: Together we can make a difference: Improving communication, behavior, and learning outcomes at school and home.Presented at the Wyoming Down Syndrome Association Family Conference; June 2010; Casper, WY.

Professional Organizations

And….this great conversation we started on Twitter…got the SLPs at Cincinnati Children’s talking…Jenn said:

“I am sure you can appreciate the internal discussions that went on at Cincinnati Children’s as this topic was evolving”

So what I have learned is that it seems so far…that just as speech is what promotes speech…feeding promotes feeding..not NSOMEs…I really have a lot of spring cleaning to do here…and parents to talk to…changes that will be made…and information to pass on…and for sure will stay connected with Jenn..and still hoping to hear from Dr. Lof and Dr. Sheppard.  Below is an email from Jenn:

Kim,

Regarding models – I don’t follow one program. However, I frequently reference Prefeeding Skills by Suzanne Evans Morris: http://www.amazon.com/Pre-Feeding-Skills-Comprehensive-Resource-Development/dp/0761674071


When we see babies in clinic most have low tone, but some do not. If the child is breastfeeding or taking a bottle well we don’t recommend any exercises at all. Our role has been to guide parents in proper feeding skills and to make adjustments on skills outside of the norm. Unfortunately we’ve seen well intended EI therapists recommending a NUK brush to the palate causing oral defensiveness.

Babies with DS vary so greatly – especially ones with cardiac conditions (up to 50% of the population). Actually watching them feed and interact tells me a lot. Regarding your specific questions:

*   Tongue retraction/protrusion: if a baby has tracheomalacia, pulmonary/cardiac issues, persistent congestion, etc. we do not work on retraction except as necessary for feeding. As the child ages (between 18-24 months) I have success teaching “tongue in” verbal cues and modeling during activities. We often see increased tongue protrusion during teething, which happens later in children with DS. It’s also seen when they are learning new motor skills – e.g. walking, sitting, etc which is to be expected.
*   Lip rounding: Again, for feeding we work using non-nutritive and nutritive tasks such as sucking on a pacifier, gloved finger, or with external support using a bottle. For speech I work on the sounds and model in a mirror. Honestly, until a child is able to imitate sounds, imitation of lip and tongue positions is more about awareness and exposure to volitional control over the mouth. I really work on articulation clarity in children who have the cognition to understand what I am asking and can self-monitor/correct. Until then my treatment is very focused on total communication – speech, language, and alternative modes of understanding/expressing.

 

So…it seems to me…that my analogy to my Grandmother’s sauce…also applies here to feeding..and that I gotta get moving…and start using feeding to help feeding only…..and still plan to ask more questions….because I still have more in reference to the chewing hierarchy…and straw drinking…all in reference to children with DS…or low muscle tone (which is NOT muscle strength)….makes sense now.

Thanks once again to Caroline…to Jenn…Brian..and Mary.

Time to start cleaning………………

About Kim

My name is Kim Marino and I have been practicing as a licensed speech and language pathologist since 1993. I work on Long Island providing diagnostic evaluations and services to children from birth to age 21. My experience is vast and am proud to say that I work with children that may present with articulation and phonological concerns, oral motor feeding concerns, Down Syndrome feeding, cognitive rehabilitation, auditory processing delays, receptive language delays, cleft palate feeding and sound development and expressive language delays. Most importantly, I am the mother of four amazing children and am happily married to my childhood sweetheart. I feel blessed to have my four children and so lucky to share this journey in life with my husband. I always had it somewhere in my head that I wanted to develop a blog or a website of some sort so that I could provide families with an additional resource....so that parents could help their little ones become a better communicator. And as I was developing this blog....I realized that I also needed to share the stories about my life and my children....and the funny things along the way that help to keep me smiling. Whether you are a working mother or not...finding balance between home, children and life can be a challenge....I hope that my blog helps to bring a smile to your face..and also some tools to help you help your little or big one. I hope you enjoy! Kim
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