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News for Members and Friends
November 19, 2014

It's beginning to look a lot like the holiday season...

Next week is Thanksgiving! You know what that means...it's that time of year when we feel pressured to do everything, be everywhere, and enjoy ourselves ALL THE TIME! No problem, right? Even with cranky family members, yucky weather and your planned budget going out the window... thanksgiving-illustration.jpg

To help keep from becoming completely undone before we turn the calendar to 2015, take a deep breath and consider this: NO ONE has a holiday that looks like the one in magazine photo spreads and on TV. Really.

And really, things rarely go exactly according to the plans we've made or the picture we've created in our heads. If you have a family member with Down syndrome, you already know this: plan ahead, but be flexible! Be ready to go with the flow when things change at the very last minute.   

Will You Be Traveling by Air?   

The Transportation Security Administration (TSA) has created a "What to Expect" document to help people with disabilities or medical conditions. Navigating unfamiliar airports, the security screening process and flying in general can be very stressful! This information may be helpful in planning ahead, and in better understanding what to expect if you are traveling during the holidays with someone with Down syndrome. 

Things to know:
  • Children with disabilities can be screened without being separated from their parents or guardians. Parents or guardians should inform the officer conducting the screening of the child's needs before screening begins. Parents or guardians may offer suggestions on the best way to approach and screen their children.
  • Adult passengers with intellectual disabilities or developmental disabilities, such as Down Syndrome or autism, can be screened without being separated from their traveling companions. The passenger, or his or her traveling companions, should inform the officer conducting the screening of the passenger's needs before screening begins. The passenger, or his or her traveling companions, may offer suggestions on the best way to approach and screen the passenger, especially if it is necessary to touch him or her during screening.
  • Passengers can be screened using imaging technology or walk-through metal detectors only if they can walk through on their own.
  • If a passenger cannot or chooses not to be screened by imaging technology or a walk-through metal detector, the passenger will be screened using a thorough patdown procedure instead. A patdown procedure is also used to resolve any alarms from a metal detector or anomalies identified by imaging technology.
TSA Cares is a help line to assist travelers with disabilities and medical conditions. Travelers may call TSA Cares toll free at 1-855-787-2227 with questions about screening policies, procedures and what to expect at the security checkpoint. The TSA recommends that passengers call 72 hours ahead of travel for this information.

 
Help Yourself and Other Families this Month
Make this the month you join DS-Connect™, the registry for people with Down syndrome!

DS-Connect™ is a voluntary, confidential, online survey tool to collect basic information about people with Down syndrome. This information can help connect people with Down syndrome to scientists who study it; promote research by collecting information that scientists can use; help health professionals improve how they treat people with DS; and help scientists develop new treatments that may improve the quality of life for people with Down syndrome. Get all the details here!

You can also assist students who are doing research related to Down syndrome for their graduate work. Here are two opportunities that may be of interest to you.

The Prenatal Possibilities Project at Hunter College and UNC Charlotte is interested in learning more about what early intervention (EI) could look like for families who know during pregnancy they will be eligible for early intervention once their child is born. If your child has a diagnosis that could be identified during pregnancy (note: it didn't have to have been diagnosed then) and were eligible for EI because of this diagnosis, you can participate in a research study by completing a survey. For more information and to access the survey, go to:
https://jfe.qualtrics.com/form/SV_230RyMHcJLVatSt Families of children of any age are welcome to participate.

A graduate student at University of South Carolina's Genetic Counseling Program is collecting information that will help health care providers give more "family-centered" care when working with their patients. The survey contains a series of questions about your child with Down syndrome and the types of medical providers he/she sees on a regular basis, and asks about your opinions and perspectives on the level of psychosocial/emotional support that is offered by your child's pediatric health care providers. Learn more about the survey and how to take it here: https://www.surveymonkey.com/s/psdsparentperspective


Connect with Your Fellow Adult Siblings on Facebook
Adult siblings of people with Down syndrome can learn so much from each other! We've created a Facebook group so you can share stories and photos, ask questions, learn new information and just stay connected!

If you are an adult sibling, visit this link to join this new group: https://www.facebook.com/groups/1514793162109765/

If you aren't an adult sibling, we hope you'll share this link with the adult sibs in your life!

Just a couple of other things...


santa-with-cookie.jpg During the holidays last year, one of our member families attended a play called The Santaland Diaries, at the Kansas City Repertory Theatre. Following the show, our member sent an email to the theatre, explaining his disappointment in the play, due to the repeated use of the word "retard".* He told the artistic director at The Rep, that it was not only offensive to him, but also terribly sad that his adult son with Down syndrome was subjected to it, too. He requested that the artistic director "edit the offending part of the script out of future performances" and to let the writer, David Sedaris, know that he has offended loyal patrons of The Rep and people with disabilities everywhere.

While he didn't receive a response to his email from the artistic director, the Rep's executive director called to apologize, and offered the family free tickets to see A Christmas Carol. The Rep's executive director also visited with the Down Syndrome Guild of Greater Kansas City, and appeared sincerely concerned about becoming educated and in doing the right thing.

Surprisingly, The Santaland Diaries is on the schedule at the Kansas City Repertory Theatre again this season. When the Rep was contacted to see if the script had been modified, the answer was "no". It seems the Rep has chosen to disregard the objections raised last year.

The "R-word" is a slur against people with intellectual disabilities, and is just as cruel and offensive as any other slur. Originally a medical term, it has become widely used to degrade and insult people with intellectual disabilities. The use of this word reinforces painful stereotypes of people with intellectual disabilities as being less valuable than other members of society.

We join our members in Kansas City by asking that this word be removed from the script or that the play be removed from this theatre. We encourage The Rep to take the lead in this matter, and choose not to perform Mr. Sedaris' play, if they are unable to edit the offensive part.

We would also encourage our member families to stand up to similar theatres across the country, where this play is being performed. (A Google search will let you know if it's being performed in your area.)

*"At noon a huge group of retarded people carne to visit Santa and passed me on my little island. These people were profoundly retarded. They were rolling their eyes and wagging their tongues and staggering toward the Magic Tree. It was a large group of retarded people and after watching them for a few minutes I could not begin to guess where the retarded people ended and the regular New Yorkers began. Everyone looks retarded once you set your mind to it."

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And last -- we would be remiss if we didn't remind you that the end of the year is a great time to think about your charitable giving for 2014. We hope you've thought of the National Down Syndrome Congress in your giving this year! If you haven't had a chance to make a donation, we invite you to do so now. https://register.ndsccenter.org/donations/donatewithpayment.aspx

We are truly grateful for all of the support we receive from our members. We can't wait to see many of you in person at our annual convention in June in Arizona!  
Making a difference. One family at a time.


National Down Syndrome Congress
30 Mansell Court, Suite 108
Roswell, GA  30076

800-232-6372; 770-604-9500