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NODCC NEWSLETTER
JANUARY 2012

Thank you for your support of the NODCC! Our mission is "to enhance the quality of life and promote opportunities for individuals with a disorder of the corpus callosum and to raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking."

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OUR FAMILY STORIES

Thoughts from Theresa Walker, Regional Leader for the Northern New England Family Partnership group ...


One of the goals of my family when starting the NNE-FFP was to enable our 15-year-old son, Tim (p-ACC), to meet kids a bit older than him living with a corpus callosum disorder. 

That goal was met quickly when the Barker family joined our group. Judy and Paul Barker's son, Josh, is enrolled at the University of New Hampshire (UNH), just two miles from our house. Such a great resource! 
 

Tim and I visited Josh at his UNH dorm last fall and got to witness that college is possible and doable for kids with disorders of the corpus callosum (DCC). Driving the short distance home after that visit, I asked Tim what he thought about the dorm room and campus life. 

He replied by stating, "When I go to college, I want to study animals." A great answer because it showed me that our short visit enabled my son to envision another option for his future. 


Imagine our surprise when on the first day of high school this year, Tim saw Josh in the hallway of his school. It turns out Josh will be interning in the athletics department at Tim's high school this year! Such a small world and a delightful bonus of being a member of the NODCC Family Partnership Program!
  

According to Judy Barker, Josh's mother, he is majoring in Kinesiology, with a minor in Education, at UNH. Josh will graduate this December, and he hopes to find a job as a classroom aide in an elementary school and to coach sports at the high school level.

For more information on organizing a Family Partnership group in your local area [email protected]

 


BOREALIS PRESS FUNDRAISER
Borealis Press PhotoWe'd like to tell you about a wonderful new way for the NODCC to earn income.

Borealis Press
, which makes funny and true greeting cards and other gifts, has agreed to donate 10% of purchases made in 2012 using the NODCC's special code on their website.

(The Borealis Press vice-president has a family member living with a DCC and is a former NODCC board member.)

We think you will enjoy just looking through the
website. If you find something that you like, we're thrilled to get the income. There is nothing else that you or we have to do!

What better way to get your birthday, mother's day, congratulations, thank you, get well, or just plain Hi There! cards?

 

Here's the link make sure you use the code NODCC12.

And, feel free to share the code with your family and friends, which will help us even more.
 
We sincerely appreciate all your support!

DCC RESEARCH NEWS

Dr. Glena Andrews is a licensed clinical psychologist who has been studying the behavioral effects of ACC at the Northwest Nazaren University in Nampa, Idaho where she is a professor of Psychology and the Chair of the Department of Behavioral Sciences and Cultural Studies at the University.

In addition to her teaching and research responsibilities, Dr. Andrews provides treatment for persons with traumatic and acquired brain trauma. She has multiple publications and presentations in the areas of neuropsychology, PTSD, and rehabilitation, and she has presented her research findings at past NODCC Conferences.

In the following article, Dr. Andrews describes her research and some of the recent findings related to behavior of children with agenesis of the corpus callosum. 

 

The Effects of Dysgensis of the Corpus Callosum on Development: Birth through Teens

Glena L. Andrews, Ph.D.

Northwest Nazarene University, Nampa, Idaho

 

Two important periods in development, birth to 5 years and puberty, are the focus of current research project at our Idaho lab. We are continuing to evaluate behavioral characteristics comparing children and teens with agenesis of the corpus callosum (ACC) and partial agenesis (pACC) with the behaviors of children with other brain anomalies such as prenatal exposure to alcohol and attention deficit hyperactivity disorder.
 

We began our study on the development of infants and toddlers approximately 3 years ago in order to better understand if developmental delays exist prior to age 5 years. Using a sample of 134 children, with either ACC or pACC, we found results consistent with anecdotal information gathered over the years from parents. Primarily, children under the age of 5 years do not always demonstrate obvious delays in major developmental milestones.

Furthermore social, emotional, and cognitive behavior problems are not evident prior to age 5 years (unless the child was born with additional cognitive problems not related to ACC). We found no differences in the behavior ratings of children with complete ACC and pACC except on the Pervasive Development Problems (PDP) scale in which children with ACC were rated in the borderline range. Upon closer inspection, it appears that moderate speech problems in young children (1 � to 5 years) tend to elevate the PDP scale on the behavior checklist.
 

We focused on gathering objective data with younger infants over the past 3 years using the Bayley Developmental Scales. In our preliminary findings we discovered that both receptive and expressive language skills are delayed in children with ACC when compared with unaffected children.
 

It seems possible that a lack of difficulty in social interactions might be due to the simplicity of a young child's social environment.   It is possible that young children with dysgenesis of the corpus callosum progress along normal developmental levels until the child reaches elementary school years. This may be true for the developmental trajectory with other behaviors as well, including impulse control and emotional reactivity.

Since problematic behaviors in social and emotional areas are not consistently apparent until elementary school years or later, it is understandable that parents would feel confusion and distress upon finding that their child is struggling with multiple behavioral, cognitive and emotional challenges upon entering elementary school. Without behavioral markers within the first few years of life, parents, and professional are less prepared for the difficulties the children will experience in school years.
 

Our newest focus is on executive functions during ages 13-21 years. We began gathering test data this summer and welcome volunteers. Some of the data for our projects can be gathered using checklists and rating scales that can be mailed to care providers. Please contact us, using the information below, if you are interested in participating.

 

Glena Andrews, Ph.D.

Behavioral Sciences and Cultural Studies

Northwest Nazarene University

623 S. University Blvd

Nampa, ID  83686

[email protected](208) 467-8459

 

CALL FOR RESEARCH PARTICIPANTS 
 

A research study at The University of Texas at Tyler is seeking educators (teachers, therapists, specialists) and/or parents/caregivers of children diagnosed with Agenesis of the Corpus Callosum (ACC) who are at least 18 years of age. The purpose of this research study is an attempt to obtain data on individuals who have been diagnosed with ACC in order to recognize academic and social interventions that are currently working for these children within the classroom setting. Your participation in this research will provide additional information to parents and to individuals who work with children in educational settings.

For more information, please contact Dr. Julie Delello at [email protected]    

If you are an educator and would like to participate http://uttyler.qualtrics.com/SE/?SID=SV_ehAhBe7760ga6Wg 

If you are a parent and would like to participate

http://uttyler.qualtrics.com/SE/?SID=SV_bxqZoaid7g0t3uI


Project Closing Date: March 2, 2012

RESOURCES

NODCC Website


Our DCC Resource Center is a great source for information about educational issues as well as other topics. Lecture notes and podcasts from our past conferences are available thanks to the many researchers and professionals who have given of their time and expertise.

 

Topics of interest include

Accessing Social & Educational Services

Apraxia: Challenges & Treatment

High School Educational Strategies

Speech and Language Skills: Inflections, Social Cues, Pragmatics & Body Language

Developing Self-Esteem and Social Skills for ages 5 - 12

Telling Your Child, Silblings and Classmates about DCC

Maximizing Your IEP

And many more! NODCC DCC Resource Center
 

Other Websites of Interest
 

RareArtist.org is a free, online art gallery for individuals with rare disorders of all types to display their artwork and allow others to view their artistic expression. According to the Kakkis Everylife Foundation, who created the website, "Art is an expressive medium that we all use when capturing the trials and triumphs of our human existence.... [and] can be a particularly powerful medium to guide us all, in our struggles and successes." To view the gallery, upload your own art, and learn more about their annual Art Contest, visit their Website

Pacer Center for National Bullying Prevention
is a parent training and information centerfor families of children and youth with all disabilities from birth through 21 years old. According to their website: "PACER's National Bullying Prevention Center provides creative and interactive resources that are designed to benefit all students, including students with disabilities." Visit their website or ideas on how to take action against bullying for Elementary School Children and for Teens


NICHCY
the National Dissemination Center for Children with Disabilities contains a wealth of information, downloadable fact sheets and resources on disability-related topics, including educational law and research based educational practices.

 

PLAN TO ATTEND NODCC DCC CONFERENCE 2012

 Conference Banquet

Mark your calendars now to attend the NODCC's Disorders of the Corpus Callosum Conference next summer! 

July 6 -8, 2012

San Antonio at the Hilton Airport Hotel