The long awaited event is finally here: The National Down syndrome Congress Convention: Beyond All Limits!
The NDSC had their yearly event in Phoenix, Arizona this year, so it was possible for us to attend, and what a blessing it was.
In case you missed it, let me tell you all about it:
First of all, it was held at the Marriott Desert Ridge, an exclusive resort with a very intimate and elegant atmosphere. They even had a Welcome-Banner smack in the middle of the resort, just for us…so cool.
Registration and Exhibit Tables opened up on Thursday evening, so I took advantage of that, got myself all oriented and set up before the initial registration – chaos.
Then Friday afternoon the fun began and I must say, the NDSC really had this event completely organized down to the last minute.
My daughter Christina, who has Down syndrome, was able to participate in the Teens and Young Adult Group, and I cannot say enough Thank You’s to ALL the volunteers that kept those young adults entertained, supervised, save and happy throughout the entire 3 days.
The room had many tables and each table had a number of volunteers and a handful of young people with Down syndrome. The days were filled with laughter, snacks and fun activities, and I never had to worry about Christina’s safety, which is my biggest concern with her, since she is still considered a “flight-risk.” Yes, she is a teenager, who still likes to take off and go on adventures on her own without telling anyone. And if you have ever been in that situation, you know what it feels like when your child goes missing and your heart just stops until he or she is found.
My youngest daughter Maria, she is 12 years old now, participated in the Siblings Events.
Let me tell you a little about Maria. She is an amazing angel, who always watches out for her sister with Down syndrome. Maria will play with Christina, defend her, advocate for her, help me with the household, and is basically my Right Hand. I swear this child can run 3 airplane-control-towers, do the dishes, hang up the laundry and supervise Christina all at the same time, she is that amazing!!!! I don’t know what I would do without her. She is the kind of child that goes to bed smiling, wakes up smiling and always has an encouraging word or up-beat attitude. That is WHY I thought it was so awesome that there was an event for the siblings, so Maria could see that she is not the only little girl on the planet with a sister that has Down syndrome. It was nice for her to meet, interact and have fun with other kids that are walking her journey as well…..and of course have relaxed fun and not constantly have to worry about the safety of her sister. Maria has always naturally watched out for Christina, which I think puts a lot of stress on her and it worries me. But I felt very blessed that she was able to fully enjoy herself for a few days.
Then for us, the parents, there were so many speakers to choose from and so many great topics.
I went to Janet Romo’s presentation “Effective Strategies for Modification to the General Education Curriculum” on Friday-afternoon and Friday evening we kicked up our heels at the dance party, which was probably my most favorite part of the event.
On Saturday morning, the presentations continued, and I attended “Alzheimer’s and DS.” It was interesting, but I do NOT agree with many of the things that were presented here. A lot of it was trying to run fear into the parents, so we run to the doctors and hire their services. I have a completely different perspective on this: for example you can prevent most of the illnesses and diseases with proper diet, exercise and mental stimulation, like PLAYING the PIANO and a VEGAN LIFESTYLE.
Later that morning I went to “Sing Me a Story” and that had a lot of fun musical activities for both the kids and the parents.
On Saturday afternoon, I attended “Promoting Self-Esteem, Competence, and Independence and Teens and Adults with Down syndrome. The presenter was Dennis McGuire, PhD and bla bla bla….I did NOT like him at all…..he tried to be funny by constantly making fun of his dead wife (not funny!) and by telling us parents about our kids’ behaviors. He does NOT have a child with DS, and yet he claimed to know more than us, just because he has some crazy long title after his name. When I confronted him about a couple of issues, he just brushed straight over them and totally ignored what I just said. Then at the end I tried talking with him once more and he couldn’t give me the time of day….so 5 thumbs down for that guy!!!!
Saturday night was another dance, but it was not as fun as the night before, because there was no room for dancing, it was way too crowded. The banquet-tables were not moved, so there was no space for the dance and was actually a little dangerous. But Christina found a wonderful dance-partner, Matthew, who treated her with such love and gentleness….just look at those two:
Sunday morning I went to “I am Rural” and it was interesting to hear how people in remote country areas handle their situation with a child that has DS.
And my favorite and last presentation was “Soul Sister,” where 2 sisters, one typical and one with DS, took us on a journey through their life together, as they find their place in the world.
After the last presentation we went home for a couple of hours and came back to take float in the Lazy River and take a swim in the resort’s pool.
I met so many wonderful people, mostly parents of children with Down syndrome and feel like I have made some life-long friendships.
I also met Tim Harris, the young man with Down syndrome who owns his won restaurant….very inspiring!
Christina ended up with a cute boyfriend, whom she enjoyed dancing with, but unfortunately he lives in another State 🙁
Plus she danced with Tim Harris till 1am in the morning, way after the formal dance was over..this girl has energy!
The event was life-changing and I feel blessed that I was able to go.
Beyond All Limits.…be there next year!!!