E-News Header 1     
 May 2013
in this issue
Summer Camp Suggestions
Convention Update
Advocacy and Ethan Saylor
Help Parents Connect with Information and Resources
Least Restrictive Environment
And Another Thing or Two
Is this the year for overnight camp? 

Getting ready for an overnight camp this summer?  You may be a little anxious, especially if this is the first time your child or young adult is going off to sleep-away camp. Here are a few tips that we first printed a couple of years ago, that we hope will help you get ready for this big event! 

  1. Become familiar with the camp. If possible, visit ahead of time. If that's not possible, go to the camp's website or browse through brochures and talk to your son/daughter about what to expect.
  2. Check into the camp's policy about mail, phone calls, and care packages. Many camps do not allow phone calls. If mail is allowed, send a letter in advance or leave it with the counselor for the first or second day. Focus on how proud you are of his Kayakindependence and how much fun he will have.
  3. Go over the packing list well ahead of time, and start packing a week or so in advance to eliminate that last minute scrambling for things last flashlight batteries or water shoes.
  4. Do not pack new clothes - camp is generally dirty business with all of the arts and crafts, hiking, etc. Make sure all clothing and other belongings are marked with your child's name.
  5. Involve your child in packing so she knows what she's bringing and where to find it in her duffel bag. Consider including a favorite stuffed animal or a nightlight if your child sleeps with one at home. (Check with the camp about nightlights or white noise machines if your child is used to sleeping with those.)
  6. Don't forget medications, packed in original containers and with clear directions on when to take them.
  7. If your camper is on a special diet for celiac disease, diabetes, allergies or any other reason, talk to the camp director well in advance to make sure the diet can be accommodated.
  8. Parents of first timers, line up a support team for yourself to help you resist the urge to go get your child in the middle of the week!

Remember, a camp experience increases skills and enhances self-confidence in campers, while giving parents a little respite. Camping programs let participants discover and explore their interests, values and talents. Also, camp provides an opportunity to learn to problem-solve, make social adjustments to new and different people, learn responsibility, and gain new skills to increase self-esteem. Good luck - and have fun!

NDSC Convention: We're Going a Mile High July 19-21
It's true -- we have reached capacity for our Youth and Adults conference, and we're very close to being full for all of the Kids' Camp sessions. Even if you weren't able to secure a spot in those high demand parts of our convention, we hope you'll still come! This is such a great opportunity to learn from experts from all the across the country...and the world! All self-advocates (even those not registered for the Y&A Conference) are still welcome to attend all of the fun social activities, which includes dances on both Friday and Saturday evenings. They'll have a chance to meet lots of new friends outside of the conference workshops. 
And don't forget, Kids' Camps have only been in existence for the past three years, so families have been attending our convention for a LONG time without that option. (You just have to be a bit more creative in keeping the kiddos occupied!) 
We don't want you to overlook Thursday's Research Roundtable, hosted by the Global Down Syndrome Foundation and supported by the Down Syndrome Medical Interest Group. It's going to be an amazing day, topped off with a concert by a special musical guest. Watch for an announcement soon! Only folks registered for the Roundtable get to attend, so make sure you sign up before it reaches its capacity! (There is no fee for this event.)

Advocacy and Ethan Saylor 


The NDSC is continuing to advocate for an independent investigation into the death of Ethan Saylor, a 26-year-old man with Down syndrome, who died while being restrained by off duty law enforcement officers. If you're not familiar with this case, Ethan was attending a movie at a local theater in Frederick County, MD -- a place he visited quite often. When he refused to leave the theater after the movie ended, and while his caregiver had gone to get their car, mall security was called, and Ethan was restrained face-down. The medical examiner ruled his death a homicide, but in March, a grand jury failed to indict anyone in Ethan's death.


NDSC's Governmental Affairs Director, Susan Goodman, recently met again with representatives from the Department of Justice, as well as with Ethan's mother, Patti Saylor, and other Maryland advocates.


We'd like to encourage you to sign on to a new petition, which asks Maryland's Attorney General to launch an independent investigation. You can read and sign the online petition here. 


We will continue to work with fellow advocates in the Down syndrome community to develop and distribute a best practices training program for law enforcement and other first responders.

Help Ensure All Parents Make a Connection 
Down Syndrome Affiliates in Action (DSAIA) has partnered with the National Down Syndrome Congress and the National Down Syndrome Society to create the Gaps in the Map Project, which is designed to ensure that all families have access to support and information from a local Down syndrome affiliate.


And, to raise funds for this amazing project, they are holding a contest to win an iPad2!  

 Gaps in the Maps logo

Here's how you can win...


Give at least $21 to GapsInTheMap (http://www.crowdrise.com/GapsInTheMap) and you'll automatically be entered to win the iPad2.  It's as easy as that. Every donation, large or small, can make all the difference in helping all families to realize that they are part of a supportive Down syndrome community, so please give what you can.  To help even more, please forward this email to everyone you know!


The iPad contest goes June 3rd @ 11:59pm EST.

Getting ready for the next school year

Many of you will be meeting with your IEP teams to plan for the next school year. We like this article from the Exceptional Children's Assistance Center in North Carolina, which  addresses a topic we've heard many times from parents: when the school says that a one-on-one assistant or paraprofessional is really the "most restrictive environment".


"Some parents who ask about a one-on-one assistant for their child are told that this kind of individual support would be the most restrictive setting for their child, and that moving the child into a separate classroom or separate school would actually be less restrictive.  This is simply not true, and probably reflects a lack of information on the part of the person making that statement."


Read the full blog post here: http://nichcy.org/one-on-one-assistants-and-lre


And Another Thing or Two...

1. Congratulations to all of our families who have a graduate in the house. We know it's a busy time, but we hope you are able to take a few minutes to truly enjoy this milestone with your loved one!

2. Research projects everywhere! Below are a few you might be interested in. Click on the links to get more information and to participate in the surveys that are appropriate for you:

Relationships between Adults with Intellectual and Developmental Disabilities and their Siblings: http://www.surveymonkey.com/s/siblingrelationshipstudy


Transitioning in Children and Adolescents with Down Syndrome: http://www.surveymonkey.com/s/DStransitions


Language and Literacy in Children with Down Syndrome: https://www.surveymonkey.com/s/8PPDV99


Contact Information
phone: 800-232-6372/770-604-9500; email: info@ndsccenter.org
Find us on Facebook     Follow us on Twitter
Join Our Mailing List
NDSC More Alike