WATCH News

The Wake Area Telehealth Collaborative

Helping Children with Special Needs
 
April 2008
 
In This Issue
WATCH Sessions
WATCH Data
Wake County Services and Resources Webpage
WATCH Program Updates
Save the Dates
FDA's Comments on Botox
Power of K Revew
The Reflux Book Review
Bridging the Social Synapse Review
Abstracts of Interest
WATCH Goes International!
Fun at Marbles
The WATCH Spring Professional Development
Videoconference Series


 
 -Autism Resources Panel, Friday, May 2nd, 1:00-3:00
Join us to meet with several representatives from local agencies as they discuss the services they provide for children with autism and their families. Some of the agencies represented will include: The Mariposa School, The Raleigh CDSA, Southeast Family Services, Meredith College, and The NC Autism Society. Videoconference locations are yet to be determined. Please contact Juliellen Simpson-Vos at jsimpvos@med.unc.edu  to register for this free session or to let us know if your site would like to be a host location.

 
-Take Time for Yourself: Caring for the Caregiver, Friday, May 15th from 1:00-3:00
You spend so much time and energy taking care of others.  Come and learn how to take time to care for yourself.  Cara O'Connell-Edwards, Ph.D and Assistant Professor in the Department of Physical Medicine and Rehab at UNC-CH will lead this refreshing and engaging discussion.  Contact Juliellen at jsimpvos@med.unc.edu  to register.  We will need 3 video-conference host locations. 
 
-Using Assistive Technology to Spark Communication, Literacy and Learning, Tuesday, May 20th form 2:00-4:00
This session, led by Gretchen Hanser, OTR/L, and Karen Casey, SLP, will introduce participants to the many ways assistive technology can meet the developmental needs of children with disabilities.  This session will include early intervention professionals from the Greenville and Wilmington area, as well.  Two WATCH host sites are needed.  Please contact Juliellen at jsimpvos@med.unc.edu  to be a host site or to register.
 
-Caring for Premature Infants, Friday, May 30th from 1:00-3:00
Join Dr. Nathalie Maitre, a NICU Fellow at UNC-CH,  two families, and the Wake Med. Hospital to Home Intervention Team for a comprehensive look at caring for premature infants. Host sites for this session are yet to be determined. Contact Juliellen at jsimpvos@med.unc.edu  if your agency would like to be a host site or to register for this free session.
 
-Using the GMFM Assessment Tool, Friday, June 6th from 1:00-3:00
See full description to the right in the newsletter.  Register with Juliellen at jsimpvos@med.unc.edu
 to attend or be a host location. 

-Cranial Sacral Therapy, Friday June 13th, 1:00-3:00
Learn more about this therapy approach from Tad Wanveer, LMBT, CST-D and founder of the Cary Center CST.  Host sites yet to be determined.  Contact Juliellen at jsimpvos@med.unc.edu to register. 
 
-Save the Date: Friday, June 20th from 1:00-3:00 for a session on Fetal Alcohol Syndrom and it's Effects on Young Children.  Details to come.
WATCH Numbers for February and
March
TR
WATCH Members were busy again during the months of February and March, utilizing a number of WATCH resources for a variety of purposes.
 
 
Videoconferencing was utilized 5 times in February and March.  Twice for videoclinics, twice for educational purposes and once for networking purposes.
 
53 people participated in these sessions.  Evaluations show the average satisfaction level scored a 4.75 out of 5.0 and comfort level scored a 4.5 out of 5.0. Those involved in the educational sessions all strongly agreed that the sessions provided them with new knowledge applicable to their work.  The total mileage savings for these 5 videoconferences comes to $1141.00!
 
The WATCH listserv was also often used successfully to answer WATCH Member questions and provide feedback for future WATCH sessions.  Questions included:
  • information on  aquatics programs for children with special needs
  • locating mental health providers for children with specialized concerns;
  • information sharing about local support groups
  • requests for input on Emergency Preparedness resources for children with special needs

Thanks to you ALL for your questions, input, timely responses, and useful resources.  YOU all are the reason WATCH works!

Wake County Services and Resources for Children Birth-Five Webpage TR
 
 
We now have 42 programs included in the Services and Resources webpage. 
 
Is your agency one of them? 
 
For more information or to obtain an enrollment form contact Juliellen at
jsimpvos@med.unc.edu.
 

WATCH Program Updates

Community Partnerships, Inc.  will be offering two Social and Sensory Summer PlayGroups for Children Ages 3-6.  The Raleigh Group will be held every Wednesday, beginning June 18th through August 13th from 9:30-11:00 at Hillyer Memorial Church.  The Wake Forest Group will be held every Thursday, beginning June 19th through August 14th from 10:00-11:30 at Hope Lutheran Church.  The cost before May 1st is $320.00.  After May 1 it increases to $350.  Call 919.781.3616 ext. 235 to register or with questions. 
 
 
Developmental Therapy Associates (DTA) is offering summer group programs at both the Durham and Cary clinic sites.  In Cary, there will be two sessions of Finger Fun a fine motor group for preschoolers and a social skills group for rising K and first graders to develop turn taking and cooperative play. 
 
In Durham, there will be several social skills groups  for children ages five to seven; another group for adolescent teen girls and a third group for ages seven to ten. Please contact DTA for additional information:  The Cary number  is 465-3966 and in Durham call 493-7002.
 
The staff at TenderHealth Care has created a team to walk for The March of Dimes.  They will be walking in support of healthy babies on Saturday, April 19th.  If you'd like to support their efforts you can make a donation by clicking this
link. Many thanks!
 
Learning Together, Inc. was selected as a location by the Carolina RailHawks Soccer Team to have 2 of their players serve during the off season.  RailHawks, Chris McClellan and Caleb Norkus worked along side LT teachers, helping the children achieve their goals.  LT's Executive Director, Nell Barnes said, " It's a wondering enrichment for our program to have young, talented athletes who want to invest their time and energy working with the children!"
 
Learning Together has also been chosen as a host site for the launch of Ravenscroft's School First Rung/Ethics and Leaderships Development Program Nonprofit Internship.  This summer internship helps to serve unmet needs in the community and encourages students to consider careers in the nonprofit sector.  Rising senior, Amand Piltzer, will spend the summer working with the children, aiding the Community and Child Mental Health programs, and serving on committee assignments.
 
White Plains Child Care Center is pleased to welcome Terri Fowler as their new Center Director.  Terri graduated from East Carolina with a Bachelor degree in B-K Education and received her Master's degree in B-K from UNC-Greensboro.  She worked previously with WPCC from 2000-2003 before taking a few years off to be home with her children
Upcoming Events: 
TR
 
 
 
 
April 8th from 10:00-12:00
Wake County LICC Meeting and Summer Resource Fair at Project Enlightenment
 
April 11th from 8:30-4:00
Wake AHEC- Finding the Right Communication Strategy for Children on the Autism Spectrum
 
April 18th from 9:00-11:00
Videoclinics at PTA
 
May 2nd from 1:00-3:00
WATCH Videoconference Autism Resource Panel
 
May 9th from 8:30-4:00
Wake AHEC-Uses of Storytelling in Helping Families with Young Children
 
May 16th from 1:00-3:00
WATCH Caring for the Caregiving Videoconference Session
 
May 20th from 2:00-4:00
WATCH Assistive Technologies and Augmentative Communication Videconference Session
 
May 30th from 1:00-3:00
WATCH Caring for Premature Infants Videoconference Session
 
June 6th from 1:00-3:00
WATCH CAN Child Videoconference Session
 
 
For more information on any of these session and for more professional development opportunities check out the TelAbility calendar.

TR
Visit Our Sponsor
 
Many thanks to the John Rex Endowment for their continued support of the WATCH Program into 2010!
Join Our Mailing List
Hello WATCH Members!
 
As usual, there is A LOT of news and information  in this newsletter.  WATCH has always been about finding easy and effective ways to collaborate and share news.  In a fun turn of events over the past few months, TelAbility and the WATCH Project as been the subject of notable news. 
 
In early February, TelAbility was mentioned in the StarNewsOnline, a Wilmington area publication, that ran a story on the rise and success of telemedicine programs.  Later that month, we were also contacted by the John Rex Endowment, our WATCH Project sponsor, to be included as a feature program in their Annual Progress Report.  The theme of the report being "collaboration".  Several WATCH Members, including T.R. Goins at Pediatric Therapy Associates and Katie Miley at Tammy Lynn Center helped in developing and writing that story.  We thank them for their help!  A copy of the John Rex Annual Report, with the WATCH Story, will be sent to all WATCH Sites within the next month.
 
While it's nice to be recognized, what's even better is that the recognition is a result of everyone's efforts to make WATCH work.  So, once again we thank you for your feedback, your participation and your passion for this work.  It's the fuel that runs this machine!
 
Happy reading, happy Spring!
Juliellen
 
Comments on the FDA's Announcement about Botox
 
Some of you may be wondering about the recent concerns regarding the use of Botox in children with cerebral palsy.  Below are two links that can provide you with more information: 
 
From the United Cerebral Palsy's Research and Educational Foundation
 
From the Board of Directors of the American Academy for Cerebral Palsy and Developmental Medicine http://www.aacpdm.org/index?service=page/fda_announcement
 
 

"The Power of K"

Videoconference ReviewJuliellen Simpson-Vos, M.Ed
 
 
 
On Friday, March 28th, the WATCH Project hosted a videoconference session led by Eva Phillips and Amy Smith from the NC Department of Public Instruction on "The Power of K" Position Paper.  As the parent of a 5 year old, about to start year round kindergarten on July 14th (!), I was particularly interested and excited in this topic. 
 
While my husband and I were visiting kindergarten classrooms, I asked my daughter what she wanted me to look for.  In great earnestness, my daughter said. "Mommy, make sure it has dress ups!"  You can imagine how pleased we all were to find out, just last week, that  the school to which she was accepted was the one that had a dress up area!  Why is that so important and what does it have to do with The Power of K?  What I love about the position paper is that paints a picture of a kindergarten environment in which I can see my daughter both thriving and enjoying. 
 
The position paper provides a philosophical and research based framework for developmentally appropriate and inclusive kindergarten classrooms.  The session participants, including educators from Project Enlightenment, White Plains Children's Center, and staff from Wake County Preschool Services, spent a lively two hours discussing the merits of the position paper, as well as the challenges to putting it's message into practice in all preschool and kindergarten classrooms across the state.  The position paper aptly describes the multiple demands, placed both on kindergarten educators and children alike, in this age of testing and accountability.  Teachers are trapped between what research says is best practice and what "scripted curriculums" require.  They are faced with the challenges of children who seem to know more (and are exposed to much more) than the 5 years olds of our generation, and yet who develop in the same way.  In order to provide these children with all they need to thrive and succeed in school, kindergarten classrooms require a long list of mind-boggling resources including: dedicated and knowledgeable educators and administrators; support for children with special needs; intentional interactions and purposeful planning,;a variety of relevant learning experiences;and authentic assessments.
 
Amy and Eva spoke about the strategic, grass roots efforts being made to spread the word throughout North Carolina, to parents, educators and administrators, alike. 
A cohort of  36 kindergarten teachers across NC are currently involved in a leadership initiative to ensure classrooms are ready to embrace children's diversity, individuality, curiosity, sensitivities, and potential.  The position paper has been endorsed by the NC State Board of Education and several educational advocacy groups, who are also sharing it's message and charge. 
 
I now charge YOU with reading the position paper (just click this link!).  When you are done, print it or bookmark the link and pass it on to a parent, educator or EI professional.  Spread the word!  That's how change works, you know!
WATCH Book Review-by Beth Arch, OTR/L, Raleigh CDSA
 
 
The Reflux BookTR, written by
Elizabeth Pulsifer Anderson
 

The Reflux Book by Beth Pulsifer-Anderson is a parent friendly guide to navigating what can be a frustrating and stressful experience for the entire family.  With over 17 years experience helping families learn about and cope with children who are diagnosed with gastroesophageal reflux, the author emphasizes the importance of including medical personnel on the treatment team while outlining both basic and more complex concepts in a clear and easily understood fashion.

           

 

The first section of the book discusses basic concepts that are useful to caregivers and professionals alike.  These topics include a chapter titled "Reflux 101" which in layman's terms reviews normal digestion and the causes of reflux and answers common initial questions such as will my child outgrow this condition? Other chapters go on to discuss symptoms, diagnosing reflux, treatment options, feeding techniques and medications.  A particular strength of this fifrst section are the chapters devoted to family support, discussing issues such as intensive care parenting, parenting challenges and sleep issues.  The author does a nice job of incorporating true life stories and parent commentary to support her views and observations.

           

 

The second section of the book focuses on more advanced concepts faced while managing reflux, particularly in severe cases or while treating older children.  This section does an especially nice job of explaining complex medical tests in an easily understood manner.  Other topics include surgical and alternative medicine approaches used in the management of reflux. By offering knowledge, caregivers are empowered to advocate for their child as they navigate what can become a complicated medical system.

           

 

Finally, at the end of the book is a comprehensive list of resources for professionals and parents including books, websites, and national organizations.  The author herself is executive director of the Pediatric Adolescent Gastroesophageal Reflux Association and welcomes specific questions or concerns through the website she manages, www.reflux.org. As a pediatric occupational therapist, I found the diagrams and parent examples most helpful.  After reading through the medical management options I feel better prepared to answer parent's questions and help guide their search for answers or assistance.  I would recommend this book to parents and professional alike as a nice addition to their "toolbox" of resources.

 

 

Bridging the Social  Synapse

WATCH Videoconference Review, by Nora Roehm, Community Parnerships

Ms. Rintoul's March 7th videoconference session was designed as a follow up  to her presentation delivered on February 15th as part of the Wake AHEC Mental Health Series.  A large number of the videoconference participants were unable to attend her original presentation, so the session began with a brief overview.  This was actually very helpful for all participants, as those who had attended her original presentation benefited from the review.  The discussion revolved around examining attachment from a neurobiological perspective.  She discussed the brain in terms of having three levels, brain stem-controls basic survival skills such as breathing, etc. /limbic system-processes sensory information & is the "seat" of emotions / cortex-controls higher level thinking & problem solving skills.  She suggested we, as humans, communicate with infants & young children on a limbic level.  Because the cortex of infants is not developed they relate to the world through their limbic system by the sensory information they take in.  As adults we interact with babies in ways that are processed through the limbic system-use high pitch speech, rock them, sing to them, use exaggerated facial expressions, etc.  This was a very interesting way of looking at how attachment occurs in the brain. 

One of the fascinating ideas she talked about was new research on something called Mirror Neurons.  This refers to some research done with brain scans where one subject watched another subject perform a task.  It turned out that the parts of the brain used to perform the task were active in the subject who was only watching.  So the brain was being stimulated even though it was not actually performing the task itself.  She stated "some believe this is the biological basis for imitation and empathy".  It certainly makes a compelling argument for using inclusive environments!

Ms. Rintoul then discussed how secure attachments lead to health development.  She laid out the concepts of the "secure base" and "safe haven".  The "secure base" is the caregiver who is tuned into the child's emotions and can act as a "cheerleader" to help the child explore the world around him/her.  The "safe haven" concept refers to the ability for the caregiver to be emotionally available to the child and act as a "comfort zone" when the child is upset.  These two qualities help facilitate secure attachments.

She ended the session by talking about positive emotion and how it can foster "flexibility, creativity, receptiveness to others & learning" in young children (and adults).  However, negative emotion in a child leads to survival behaviors such as withdrawal, aggression, and defiance.  She stated when looking at problem behavior in children it is important to deal with the underlying emotion.  It will be much more effective in trying to solve the behavior problem if you can deal with the emotions the child is experiencing. 

In the end, she quoted Ms. Jeree Pawl-"How you are is as important as what you do."  This was an encouragement to us all to continue to be genuine in our relationship with the children we serve.  This was an excellent topic to discuss.  The format of the videoconference was wonderful in that it was a smaller and more relaxed environment where we could share our thoughts and questions. 

 Abstracts of Interest (March 2008),

Compiled by Dr. Alexander

 
The follow two abstracts come from evidence-based articles about children with special needs.  These two topics were chosen for this newsletter based upon recent WATCH list serv questions and discussions.  Please let us know about other research or literature reviews you'd like to see in WATCH Newsletters.

 

Systematic Review of Hyperbaric Oxygen Therapy for Cerebral Palsy: The State of the Evidence

Developmental Medicine and Child Neurology, December 2007, Volume 49, pages 942-947

A systematic review of the evidence was conducted on the benefits and adverse effects of hyperbaric oxygen treatment (HBOT) for cerebral palsy (CP). Studies of any HBOT regimen in patients with CP were included except for case reports and case series. Electronic databases (e.g. MEDLINE, EMBASE), professional society databases, and reference lists were searched to identify studies. Study quality was assessed using predefined criteria relevant to the study design. Two randomized controlled trials and four observational studies were identified. Best evidence came from a randomized controlled trial which found that HBOT at 1.75 atmospheres (atm) and 1.3atm of room air resulted in similar improvements in motor function (5-6%). Other outcomes also indicated no difference between the HBOT and room air. Observational studies reported improvements in motor function to a similar degree. Other evidence was insufficient to clarify the benefits and/or adverse effects of HBOT for CP. Both HBOT and pressurized room air resulted in improvements in motor function compared with baseline. Similar improvements were seen in the observational studies. Children undergoing HBOT were reported to experience adverse events, including seizures and the need for ear pressure equalization tube placement, but the incidence was unclear. Future research is needed to determine the efficacy of pressurized room air or non-pressurized oxygen in equivalent amounts by mask, compared with standard treatments.

 
Therapeutic Effects of Yoga for Children:  A Systematic Review of the Literature.
 
Pediatric Physical Therapy. 20(1): 66-80, Spring 2008
 
Purpose:  We completed a systematic review of the literature on the effect of yoga on quality of life and physical outcome measures in the pediatric population.  We explored various databases and inlcuded case-control and pilot studies, cohort and randomized controlled trials that examined yoga as an exercise intervention for children. 
 
Summary of Key Points:  Using the Sackett levels of evidence, this article reviews the literature on yoga as a complementary mind-body movement therapy.  We address the research through three practice patterns according to the Guide to Physical Therapist Practice and provide considerations for the inclusion of yoga into clinical practice.
 
Statement of Conclusions and Recommendations for Clinical Practice:  The evidence shows physiological benefits of yoga for the pediatric population that may benefit children through the rehabilitation process, but larger clinical trials, including specific measures of quality of life are necessary to provide definitive evidence.
 
CanChild is coming! Well, at least virtually! Remember back in July when several of you attended the Standardized Tests videconference and commented that you'd love to talk with the developers of the GMFM Assessment?  Well here's your chance!! 
 
Mark your calendar for Friday, June 6th from 1-3pm  for an international video conference program with Dianne Russel and Peter Rosenbaum from CanChild Center for Childhood Disability Research at McMaster University in Ontario, Canada.  Dianne and Peter will be talking with us (from Canada!)  about the GMFM and about their knowledge translation programs. If you are not familiar with CanChild you might want to visit their web site at 
http://www.canchild.ca   . It's full of great information relevant for children and families. 
 
Later in the spring we will be asking for those interested to register and to submit topics or questions you would like included in the discussion about the GMFM. Thanks to all of you who participated in the video conference on measurement last July for suggesting that we set this up. It should be a great program.TR
Two Times the Fun!
 
April 18th Family Fun Night 
 
The Wake County Association for the Education of Young Children invites you to Family Fun Night at Marbles Kids Museum in Raleigh (201 East Hargett Street). There will be food, fun, door prizes and local resources available. Cost is $5 for Wake AEYC Members and their families. Cost for non-members and their families is $10. Student fee is $5 with a photo ID. Come and join us!
 
May 1st Family Fun Night
for kids with special needs and their families!
 
Through a community wide collaborative, the museum will be open one (1) evening a month specifically for children with special needs and their families.
 
The first 2 are scheduled for Thur., May 1 and Mon. June 2
5:30-8:00 pm at Marbles Kids' Museum, 201 E. Hargett Street, Raleigh.  Cost is $5 per person or $20 per family.

For more information call The Arc of Wake County at 832-2660 x100 or visit
www.marbleskidsmuseum.org

proudly partnering with:
Triangle Down Syndrome Network
Wake County Cerebral Palsy Support Group
Wake County LICC (Local Inter-Agency Coordinating Council)
Wake County SEPTA (Special Education PTA)

 
FPG Autism Study
Toddlers Needed for Research Study

Families of toddlers living within 100 miles of Chapel Hill are needed to participate in an early intervention research study. The intervention was studied in an earlier pilot research project. Participants will include parents and their toddlers under age 25 months who have difficulty with social communication as compared with other areas of development such as gross motor. Parents will play an active role in the home-based intervention which targets nonverbal social-communication development, a difficulty for toddlers who may show early risk for autism. One goal of the intervention is to build a foundation upon which verbal language can develop. A diagnosis of autism is not required and there is no cost to families. The intervention is not intended to replace other intervention the family may receive. Referrals will be assessed for eligibility and eligible participants will be accepted on a first come - first served basis.

The Principal Investigator for this project is Samuel L. Odom, Ph.D., Director of the Frank Porter Graham Child Development Institute.  To refer potential participants, or to find out more about this study, please contact Martha_Lee@unc.edu. (Phone: 919-962-3982).
 
TR

TR
 
Parting Notes...
  • If you've borrowed a WATCH videoconference on DVD, please return it to the TelAbility office.  We've had several requests from WATCH Members to view the ones that seem to be missing.  Thanks! 
  • The next WATCH Newsletter will come out in June. Please feel free to send your topics of interest and contributions!