E-News Header 1     
 July 2013
in this issue
We're Headed to Denver!
Nominations for TASH Awards
After the Evaluation...
Dysfluent Speech Study
And Another Thing or Two
Taking our Convention a Mile High: This Week!  

Denver Convention Logo English

Will you be joining us in Denver later this week? If so, please stop by the NDSC table and say hello! Our staff and board of directors are headed to the Colorado Convention Center right now, to get everything ready for your arrival. We can't wait to see you in just a few days!


If you aren't able to attend this year, keep in mind you can still purchase audio recordings (and the accompanying PowerPoint presentations) of more than 50 sessions, simply by registering online. These digital recordings will be available after the convention, and will be live for your unlimited viewing until June of 2014. 


Visit our website for more information. 

TASH Awards

Each year, TASH honors individuals whose contributions have advanced equity, opportunity and inclusion for people with disabilities, and whose actions set a high standard for human rights every day. Awards are given in several areas including education, employment, media, and advocacy. Recipients will be acknowledged during the TASH Conference in Chicago, IL, December 11-14.


TASH invites you to review the TASH Awards page and submit your nomination for consideration, either by paper form or electronically. Nominations are due by Thursday, August 8, 2013. Recipients will be honored with the following awards:  


Larry J. Brumond Supportive Relationship Award

June Downing Breakthroughs in Inclusive Education Award

Marc Gold Award for Employment

Alice H. Hayden Emerging Leader Award

Positive Images in the Media Award


Read all the details on the TASH website here: http://tash.org/about/award-programs/   

After the Evaluation  


We read this article in the newsletter of our affiliate, Piedmont Down Syndrome Support Network in Winston-Salem, NC and wanted to share it with you. It was written for the blog of the Special Needs Alliance by a PDSSN board member.

The title is exactly right -- we love it! And think you will, too.  

"The child you take home is the same one you brought in."
By Chris Kelsey, Board Member, Piedmont Down Syndrome Support Network 


Parents' first experience of their child's developmental evaluation by "the experts" can be pretty scary. They know their child well, and they know that he or she might not perform. They also may feel apprehensive about what they'll hear regarding I.Q., developmental level, or functionality.


Parents should be reminded that an evaluation is a snapshot in time of what their child can do. Its true value is to assess where the child is now, so that appropriate services can be recommended. Having this information is helpful in seeking further resources - sometimes financial ones, and always developmental ones.


But the first hurdle for parents to face is the bundle of feelings that hearing the information may evoke in them. They may enter a time of grief. (They may not call it that, or immediately recognize it as that, but grief is very likely lurking around the corners.) The compassion that professionals extend during this process will long be appreciated.


As we know, the first stage of grief is denial - perhaps disbelief that the evaluation results are accurate. We have known people to go from doctor to doctor, or place to place, hoping to hear news that is easier to accept. In part, this is because embedded in denial is hope - and hope is good. At the same time, getting started with services as early as possible is a vital key to a child's success in life, and as parents we don't want our internal processes to stand in the way of our child's progress. So the best advice to parents is to go with the recommendations, and keep a close eye on how the child responds. (Parents may also decide to dive into the Internet and learn all they can!)


Parents should be reminded that an important thing to remember is that the evaluation is descriptive of their child's abilities and responses at the time of the evaluation. "The experts" are experts in their fields. Parents are the experts on their child - they know his or her personality, spirit, temperament, sense of humor, likes and dislikes, and levels of tolerance. And these are essential factors for long-range success in any treatment program.


As for the future, even after going through the second, and third evaluations, parents may revisit some of the feelings they had the first time around. But they'll have more perspective on the process, and on the results. They will know that the information they hear will be useful, and that their advocacy on behalf of their precious child will make all the difference!


Chris Kelsey has an M.A. in counseling psychology and is the retired Director of Early Childhood Intervention for Forsyth, Stokes and Davie Counties in North Carolina. She serves on the boards of both Piedmont Down Syndrome Support Network and Family Services Inc. in Winston-Salem.

Research Study of Dysfluent Speech in Children, Adolescents and Young Adults


Dr. Ronald Gallop and Dr. Libby Kumin are seeking participants who have a family member with Down syndrome who has speech that is considered dysfluent (stuttering and/or cluttering). They will use information from this study to learn more about dysfluency in people with Down syndrome with the ultimate goal of determining which treatments might be most helpful.  


Direct benefits to participants and their families would be receiving an individualized speech profile of your child which can help your SLP in planning treatment with you. You can videotape your child in your home or they can videotape your child at the Loyola University Maryland Graduate Center in Columbia Maryland.  


For more information contact Dr Gallop at rfgallop@loyola.edu.

And Another Thing or Two...

1. Woodbine House now has several Down syndrome titles available for your Kindle! They include perennial favorites such as Babies with Down Syndrome:  A New Parents' Guide and I Can, Can You? Board Book.  Visit Kindle for the entire Woodbine collection!


2. And we're here for you all year long! Call or email anytime with your questions or concerns! Our staff and professional advisory council are always willing to help find answers, give advice, locate resources and just plain listen! 800-232-6372; info@ndsccenter.org

Contact Information
phone: 800-232-6372/770-604-9500; email: info@ndsccenter.org
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