Giving Aphasia a Voice in Baltimore

June27blog

Nationally, more than one million Americans are living with aphasia. Aphasia is more prevalent than Parkinson’s disease, cerebral palsy, or muscular dystrophy, yet public surveys show that only one in 100 people know about aphasia.  If aphasia is so prevalent, why are so few people aware of this condition?  The answer is simple. How can people with aphasia advocate for themselves and increase awareness when their central problem is communication?

 

Fortunately advances in technology are providing new opportunities for people with aphasia to speak up.  Individuals with aphasia who attend the Snyder Center for Aphasia Life Enhancement, a community treatment center in Baltimore, are dispelling the notion that they are unable to advocate for themselves. Members who attend the center use an array of technologies to enable their ability to express their thoughts and reveal their competencies and during Stroke Awareness Month they were, indeed, heard.

 

Forty members with aphasia who attend SCALE decided to increase awareness about aphasia in Baltimore through the arts. On May 4, SCALE hosted a play about aphasia entitled “Nightsky.” The SCALE community partnered with the Hugh Gregory Gallagher Motivational Theatre, a non-profit organization that raises public awareness of disability issues and discrimination in our society through dramatizations of real-life and fictionalized experiences. SCALE members invited the group to perform “Nightsky” to their friends, neighbors and folks from the larger community. Despite severe communication impairments they sold tickets, wrote presentations and presented to more than 135 guests.

 

Some members read their written messages orally. Those who have limited spoken output used programs such as WordQ, and Lingraphica to formulate their messages. Several SCALE members used the Vast Program to enable them to fluently produce the materials that they had written. The Vast Program is an innovative research-based application of video technology designed to facilitate and improve communication abilities for speech-impaired individuals. Following close-up video of mouth movements combined with visual and auditory cues allows individuals to readily produce speech. SpeakinMotion LLC has made this approach available to individuals with motor speech disorders such as aphasia and apraxia through its speech therapy apps and custom recording service.

Howard at NightSky

SCALE participant, Howard Snyder, presents information about “Nightsky” to an audience.

Learning to use these programs, creating their messages and practicing what they intend to say required weeks of preparation and hard work by stroke survivors with aphasia. But, the hard work paid off when they were able to deliver their unique messages themselves to advocate for themselves and to educate the public about the effects of stroke on communication and quality of life.

 

Thanks to the National Aphasia Association for uniting scale and the Hugh Gregory Gallagher Motivational Theatre for this collaborative opportunity to promote aphasia awareness.

 

Denise McCall, MA, CCC-SLP,  is the director for SCALE in Baltimore. She can be reached at dmccall@scalebaltimore.org.

Never Having to Say ‘I’m Sorry’

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“I’m sorry to tell you that Sara has a permanent hearing loss.” One of the less glamorous aspects of being an audiologist is telling a parent that his or her child has a hearing loss. Although this is difficult news to deliver, how you convey that information can potentially have as much of an impact as the hearing loss itself.

Instead of apologizing for delivering this news, another way to frame the conversation is to say, “I know this may come as a surprise to you, but…” Although semantically similar to the apologetic statement, qualitative and anecdotal research has shown that parents will remember verbatim how the news was delivered to them.  As Dr. Jeffrey Lewis, a professor of mental health counseling at Gallaudet University who also teaches counseling skills to audiology students, comments, “This kind of subliminal language, though not intentional, can have real consequences for how the family approaches this news and can set lower or even negative expectations for the abilities of the child”.

Another example of negative messaging is using the word “fail” with regard to newborn hearing screenings.  Not only does “fail” suggest a hearing loss that very well may not be present; it can also make parents defensive. As one parent commented, “How could my daughter fail a test that she didn’t know she was taking?” Many institutions, including Boston Children’s Hospital and Gallaudet University, have incorporated this language into their clinical practice.

Knowing your audience is also important. For example, some deaf parents may be excited and happy to learn that their child has a severe to profound hearing loss. As one deaf parent explained, “With my first child, my husband delivered the results of the newborn hearing screening. He came into my room saying, ‘Alright she did it! Our baby passed the test; she’s deaf!’  When this occurred with our second child however, we were both surprised to learn that he passed in the sense that he was hearing and not deaf like us.”

Other deaf parents may be disappointed or have mixed feelings about this news. Most deaf babies are born to hearing parents who are in complete shock when they learn of the results.  By framing the news in a neutral manner, you are putting yourself in a position to support the parent and answer any questions they may have.

Although we are certainly not denying the shock and grief that most parents experience when facing a diagnosis of hearing loss, the less negative we can make the message, the better. Suhana Alam, a deaf adult recently selected to speak on a panel of successful deaf college students at the Annual Early Hearing Detection & Intervention Meeting in April commented, “The provider…needs to make sure the parents understand that their child’s brain works just fine; he or she just has limited hearing capability.”

As audiologists, we can then work with the family in providing information on the full range of communication options available to them.

Regardless of whether we are seasoned audiologists with years of experience or new audiologists beginning our professional careers, we are constantly adapting to change in audiology and critical evaluation of our language and word choice are easy adjustments that we can make for our patients and family members.
Cynthia Frey wrote this article with Whitney Kidd. Both are graduate clinicians in the Deaf and Hard of Hearing Infants, Toddlers, and Families: Collaboration and Leadership Program at Gallaudet University.

Collaboration Corner: Why Finding Your Virtual Peeps Is Important

June 20

This month I wrote an article for Perspectives in School-based Issues (SIG 16), speaking to the benefits of professional learning communities (PLC). Professional learning communities are the ultimate form of collaboration (DuFour & Eaker, 2010). But consider expanding your boundaries a little further. Consider virtual PLCs; online communities through Twitter, Facebook, and online discussion threads. That’s right, social network sites and online forums can support your professional development, all from the comfort of your living room.

When I bring this up to my colleagues or friends, many groan… it’s one more thing, and how can you possible learn anything in 140 characters? Consider this:

  • One-third of public school speech pathologists travel between two or more schools (Edgar and Lugo-Rosa, 2007), thereby complicating the ability to meet face-to-face with colleagues
  • Professional development is meaningful when it is learner-centered, and by choice (Morewood, Akrum & Bean, 2010).

Virtual discussion forums can provide:

  • Opportunities to globally network with colleagues (Davis, 2012). More than just sharing hyperlinks and lesson plans, chatting with interdisciplinary teams and other educational staff, has broadened my perspective as a practitioner.
  • Online forums foster a chance to reflect (Davis, 2012). I have learned from the #slpchat colleagues, the #slpeeps, #spedchat folks, and the #edchat folks enormously. Many of these groups hold regular chats either every week or at least once a month.
  • Access information, or ask a question whenever you want (Dunlap & Lowenthal, 2009). Anyone with a smartphone can troll Twitter, or participate in an online discussion, any time of the day.
  • Access the only information that you need (Davis, 2012). Social network sites are completely dependent upon the user. This make finding information learner-centered, and not a boring, mandated, policy-driven affair.
  • A way to feel connected and supported (Hur & Brush, 2009). Sometimes getting out of your own workplace can help you regroup after a tough day.

So go ahead, dabble a little. Then advocate for yourself. Talk to your administrators. Write it into your professional development plan. Use the hyperlinks in this blog the and references listed below to support your case. Social network sites can be an affordable, meaningful tool for learning. For all the push to individualize learning for our students, doesn’t it make sense to do the same for those who teach them?

 Dr. Kerry Davis is a city-wide speech-language pathologist in the Boston area. Her areas of interest include working with children with multiple disabilities, inclusion in education and professional development. The views on this blog are my own and do not represent those of my employer. Dr. Davis can be followed on Twitter at @DrKDavisslp.

References:

DuFour, R., & Eaker, R. (2010). Revisiting professional learning communities at work: New insights for improving schools. Bloomington, IN: Solution.

Hur, J. W., & Brush, T. (2009). Teacher participation in online communities: Why do teachers want to participate in self-generated online communities of K-12 teachers? Journal of Research on Technology in Education, 41(3), 279-303. Retrieved from http://www.iste.org/learn/publications/journals/jrte.aspx

 Morewood, A. L., Ankrum, J. W., & Bean, R. M. (2010). Teachers’ perceptions of the influence of professional development on their knowledge of content, pedagogy, and curriculum. College Reading Association Yearbook, (31), 201-219. Retrieved from http://www.aleronline.org/

 

 

Yes, DSM-5 Changes SLP-Relevant Disorder Categories: What You Need to Know

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The speech-language pathology community has been abuzz for months about the pending release of the new Diagnostic and Statistical Manual of Mental Disorders because of expected changes to autism spectrum disorder and other communication disorders involving SLPs.

And indeed, the fifth edition, issued by the American Psychiatric Association last month, significantly changes ASD and several other SLP-relevant categories—and also unveils the new social (pragmatic) communication disorder.

As most SLPs well know, DSM is the standard classification of mental disorders used in clinical and community settings in the United States and other countries. The new edition is available first in print, with an electronic version to be offered later this year. See highlights of the changes to DSM-5 on the American Psychiatric Association’s website.

Here are some of the major changes in the category of Neurodevelopmental Disorders that are relevant to the work of speech-language pathologists:

 Intellectual disability (Intellectual developmental disorder)

  • Replaces the term “mental retardation” with “Intellectual disability (Intellectual developmental disorder).”
  • Relies more on adaptive functioning rather than on specific IQ scores.

Communication Disorders

Changed from expressive and mixed receptive-expressive language disorders to include:

  • language disorder
  • speech sound disorder
  • childhood-onset fluency disorder
  • social(pragmatic) communication disorder

Autism spectrum disorder (ASD)

  • Eliminates pervasive developmental disorder and its subcategories (autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, pervasive developmental disorder-not otherwise specified). Instead, children meeting the criteria will be given a diagnosis of “autism spectrum disorder” with varying degrees of severity.
  • Omits criterion related to the development of spoken language.

 Specific Learning Disorder

  • Combines diagnoses of reading disorder, disorder of written expression, mathematics disorders, and learning disorder not otherwise specified.
  • Recognizes the need to use a variety of culturally and linguistically appropriate assessment tools and strategies and does not require use of a standardized measure.
  • Does not include oral language.
  • No reference to modalities of language.


Changes in the section on Neurocognitive Disorders pertinent to the speech-language pathology field include the following:

  • Dementia is considered a major neurocognitive disorder.
  • A less severe cognitive impairment is considered a mild neurocognitive disorder.

We were fortunate to have SLPs involved in developing some of the diagnostic criteria in DSM-5. Amy Wetherby was a member of the DSM-5 neurodevelopmental workgroup and chaired a subgroup on communication disorders. Mabel Rice, Nickola Nelson and I worked on this group. ASHA responded during the three public comment periods.

Now that the new edition is out, ASHA has assembled a DSM-5 response team coordinated by me and composed of Janet McCarty, Andrea (Dee Dee) Moxley, Froma Roth and Monica Sampson. We are developing resources to guide members and consumers on the changes, including at least three articles in upcoming issues of The ASHA Leader. The articles will include:

  • A comparative analysis of what ASHA recommended and what DSM-5 includes, with clinical implications for SLPs.
  • Coding implications for reimbursement.
  • Case studies to demonstrate how the changes will affect people with speech, language, communication and cognitive disorders.

ASHA also will communicate with consumers about what the DSM-5 might mean to them through podcasts, media interviews and other dissemination vehicles. A critical message we want to convey is that SLPs will continue to provide needed services, which are based on assessment of communication strengths and needs, and not on specific DSM-5 diagnostic labels.

ASHA would like to know how you think the changes in DSM-5 will affect your clinical practice. We also are seeking case studies that demonstrate impacts of the changes for a future Leader article. Please contact Diane Paul at dpaul@asha.org.

Diane Paul, PhD, CCC-SLP, is ASHA’s director of clinical issues in speech-language pathology.

Summertime Prep for the School Cafeteria

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Summer!  Ten luxurious weeks of spitting watermelon seeds, munching on veggies straight from the garden and crafting the perfect s’more over the campfire.  As an SLP who focuses on feeding challenges in children, summer food skills are foremost in my mind this time of year.  However, once a week in the summer, my little clients and their families will focus on preparing to eat in the school cafeteria.  Before you know it, it will be mid-August and those little munch bugs will joining their friends at elementary school, or perhaps all-day kindergarten. For kids who are about to go to their very first day of school, it also means their very first day in a school cafeteria, and that can be quite overwhelming, especially for a child in feeding therapy.

Many kids are truly scared of the school cafeteria. In fact, one little boy I worked  with called it “the Café-FEARia.” Imagine a 5-yea- old, on his first day of school, as he tries to negotiate a sea of kids filing into the school lunchroom, attempting to locate his lunch box among 20 others piled into a giant bin and ultimately squeeze into a tiny place to sit at the assigned table. Now, unlatch that brand spankin’ new lunchbox (how does that latch work, anyway?) and peer inside … the clock is ticking … your little munch bug now typically has 20 minutes left to eat, clean up and get back in line with his class; not the most relaxing lunch for any kid.

 

Introduce Weekly Lunchbox Dinners

Feeding therapy is more than just learning the mechanics of biting, chewing and swallowing.  Generalizing skills to multiple environments is essential.  For kids transitioning to school lunch, introduce once a week “lunch box dinners” where the entire family pretends to eat in the school cafeteria.  At the entrance to the kitchen or dining area, one parent stashes a large bin, just like the kids will find at school.  Each member of the family has their own distinct lunchbox thrown into the bin, along with a few “old” random empty lunchboxes so kids can practice digging down to the bottom to find their own.

 

Once everyone is seated at the table, the child can practice the fine motor skills of unzipping zippers, unfastening Velcro® flaps and opening up containers.  Choose a lunchbox that is easy to open and holds all the food in one container.  It saves precious time!  My favorites are Easy Lunchboxes® and Yumbox® , both simple to open and perfect for cutting the food into bite sized pieces.  I call it “grab and gab” food.  Speaking of “gab,” many of my feeding clients also are working on pragmatic skills with their peers, especially when they are in unfamiliar situations.  As an SLP, I teach the parents to practice this little script: “I’ve got ____ in my lunch!”  In all my years of sitting in school lunchrooms and listening to young kids, it’s ALWAYS the first thing they say to each other.  It’s their traditional conversation starter, usually accompanied by them proudly holding up the celebrity food – the star of the lunchbox. I can attest that I hear just as many kids enthusiastically say “I have fruit today!” as “I have (fill in any junk food here) today!”  Try for  the veggies … it’s really okay … it’s just as cool to have vegetables cut up into stars or other fun shapes so they can announce, “I have CUCUMBER STARS today!”  Better yet, get the kids involved packing the lunches and creating fun shapes so they can exclaim “I made carrot triangles for lunch!”  FunBites® are child safe tools for doing just that.  They may not eat them that day, but they will be comfortable with carrots in their lunchbox, and that’s the first step to trying a new food in a new environment.

 

Once the meal is over, everyone latches their lunchbox and puts it back in the bin, just like at school.  The final piece of advice I offer to families is this: The most important word in the phrase family dinner is “family.”  Enjoy this time!  Happy Summer everyone!

Melanie Potock, MA, CCC-SLP treats children birth to teens who have difficulty eating.  She is the author of Happy Mealtimes with Happy Kids and the producer of the kids’ CD Dancing in the Kitchen: Songs that Celebrate the Joy of Food!  Melanie’s two-day course on pediatric feeding is approved by ASHA and includes both her book and CD.  She can be reached at Melanie@mymunchbug.com.