Published onTrisomy 21 Update
No matter how long a family has been part of the Down syndrome community, the annual conference of the National Down Syndrome Congress (NDSC) offers programs that can teach you something new, events where you can meet others who have shared in similar experiences and plenty of opportunities for memory making.
Three Children's Hospital of Philadelphia (CHOP)-connected families share what made the convention so special for them.
Self-advocate: Yacine Moueddene, 29
Near the end of a two-week, road-trip family vacation, we went to Pittsburgh, where I first participated in a research study at the University of Pittsburgh and then attended — and presented at — the NDSC Conference. I spent my time at the conference attending workshops on topics such as Health and Alzheimer’s Disease Research, a presentation by Mary Pipan, MD, Director of CHOP's Trisomy 21 Program.
My own 30-minute presentation was titled, “My School and My Life Experience,” and was part of the Young Adults Conference. Overall, the conference was very interesting, especially the research presentations.
I made new friends at the conference and met some old friends. The dinner and dance were beautiful, with a lot of tables and plates of good and healthy food. I danced with my new and old friends.
Parent: Kristin Steffen, mother of 2-year-old Lila
Every year the NDSC holds a convention filled with speakers discussing a wide range of topics important to parents raising a child with Down syndrome. This year we had the amazing opportunity to attend the convention thanks to a scholarship from our local Down syndrome group, KIIDS, and a generous donation they received from J&J foods.
The best way to describe the convention would be inspirational. There are no details left out and every speaker there has an association and love for a person with Down syndrome. The speakers were parents, self-advocates, therapists, teachers, doctors and siblings. They have spent a good amount of their lives researching and learning about Down syndrome. There is something to be said about being in a room with hundreds of other people who completely understand your life and raising a child with Down syndrome.
As parents to a 2-year-old little girl who happens to be rockin’ her extra chromosome, this convention meant the world to us. We were able to hear speakers discuss IEPs, nutrition, inclusion, potty training, advocacy, behavior, current research and, my favorite, a 20-year-old self-advocate who has been to Washington, DC, numerous times to help pass laws making life better for people with DS.
The parents who spoke were inspirational — many of whom paved the way in their communities so their child with Down syndrome would be treated equally. Many have worked tirelessly so their child and others who come after them are able to grow, learn and thrive in welcoming environments. The doctors and therapists who spoke continue to research and pave the way for families to help their children live their best and healthiest lives.
We will never forget our first NDSC convention and are forever thankful to those who recognize the importance of this event and work to make it the best weekend for families.
Clinician and parent: Helen Milligan, PT, MPT, mother of Aidan, age 16
Attending the NDSC College Fair as part of the NDSC conference provided an opportunity for us to meet with representatives from area colleges with programs which would provide support for Aidan if he decides to attend college after completing high school.
When Aidan was born 16 years ago, I never dreamed we would be discussing college as an option for him. Now this is not just a dream, but may actually become a reality.
Aidan has witnessed his brother and sister complete the college application process and attend area universities. His sister recently graduated from Penn State, and Aidan would talk about how he was going to attend Penn State one day and work at the Creamery. We would listen, but never thought it would be possible.
The NDSC hosted its first annual college fair at this year’s conference, and Aidan, my husband Mark, and I attended. Aidan surprised us when he walked up to the tables, held out his hand and introduced himself. The Millersville representative asked him why he wanted to attend college and Aidan replied, “To learn new things and to get a job.” I was impressed that he has the same goals as my other two children when they started college.
We also learned about Think College, an organization facilitating college for those with intellectual disabilities. We learned about resources available to support Aidan’s success while at school.
Mark and I discussed this very real possibility of Aidan attending college as we drove home and we plan to visit some of the programs this fall. Only time will tell if college is in Aidan’s future, but after attending the College Fair, we realize this is a real possibility.
Categories: Trisomy 21