While we like to think of summer as a time to be more relaxed and carefree, the opposite can be true if you have a child who is prone to wander. Relaxed routines, vacations in new places, and visitors from out of town can all make for an exciting and fun time, but it also means parents and caregivers must be extra vigilant in keeping an eye on the kiddos.

Here are several great tips from the Autism Consortium to keep in mind this summer (and all year long). These 12 Ways to Prevent and Respond to Wandering would be great to share with everyone who will play a part in keeping your kids safe this summer. (As you know, your child with Down syndrome doesn't have to have an autism diagnosis to be a wanderer.)

We are particular fans of the "Tag You're It" system, where everyone is clear on which adult is in "on watch" at any given time. "But I thought YOU were watching him!" is a sentence that you'll never have to hear when you use the "tag" strategy. 

In 1996, Sandra Jensen, a 34 year old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.  

Today, there is an internet petition (change.org) asking the President of the United States, "Why are children with Down syndrome not considered for organ transplants?" While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system. 

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Meet our new Resource Specialist! Ayoca Freeman just joined our staff, and will be focusing on outreach to African America Families. Ayoca lives in Hartwell, Georgia, works part time for the Babies Can't Wait Program, and now for the NDSC, too!

She has three beautiful children, ages 11, 4 and 18 months. Her 11 year old daughter has Down syndrome.

Ayoca has been attending NDSC conventions since Taylor was two! She says, "I am so happy to be a part of the NDSC team and I look forward to helping and meeting all of you." If you're in Indianapolis next month, please be sure to look for her and say hello!

Just a little slide show reminder of the awesomeness of people with Down syndrome...

21 Quotes, the Slideshow (Extended Play)