3. Access to information
Throughout the conference there are six workshop sessions. During each session there are 10 to 12 different presentations going on to choose from. I dare you not to find one that is relevant for you and your family. Having behavior issues? There’s a workshop for that. Worried about planning for the future? There’s a workshop for that. Want to learn more about the research being done on the link between Down syndrome and Alzheimer’s? Yeah, there’s a workshop for that.
The workshops are fantastic but not the only source of information at the conference. The exhibit floor is another great resource. You have access to vendors and service providers from all over the country. Chat with a representative from Clemson about their college programs. Thinking about sending your child or young adult to a summer camp? Well there are tons to choose from. You will also have the chance to meet many adults with Down syndrome that are there representing their own small business. Did you know there is a woman with Down syndrome that makes her own Zumba videos? Me neither! Her name is Yulissa Arescurenaga and she’s crazy fit. We also got to meet a woman named Sarah Ely who owns her owns her own business, Down Right Charming. Sarah designs and sews the most gorgeous quilts. Find her shop on Etsy. There was a beautiful teal and coral one with sea creatures on it that I just couldn’t resist!
But the most valuable resource at the conference? The other families! For a whole weekend we were surrounded by families who were walking down a similar path. I talked for twenty minutes with a woman named Michelle that I met in the Starbucks line about SMOs. At the Awards Banquet we met a lovely family from Florida. While J.J. and I talked with the parents about education and early intervention, our boys, Aiden (10) and Jacob (12) played with a few toys Aiden had snuck down to dinner in his pocket. Seriously people, if you ever make it to the conference don’t miss the opportunity to chat up the person next to you while you lay by the pool. You’ll be surprised what you can learn from these interactions.
It really is a conference for the whole family. While last year JJ and I attended the conference alone, this year is was a family affair. We brought our two kids, Aiden and Audrey, my mom (Grandma), my sister (Aunt Amanda), and my little brother Noah (12). All three days were jam packed for all of us.
Aiden and Noah participated in the Brothers and Sisters Conference. Each day was filled with activities where they could share ideas and network with other kids. They learned about Down syndrome and disability related issues, including how to be an advocate for Audrey. It was a safe place for them to ask questions and maybe even express some frustrations. I think the experience really changed the boys’ perspective on Audrey’s disabilities and made them feel empowered to support her. Aiden’s group even put together these adaptive cars and tracks designed for toddlers with Down syndrome. Audrey was definitely impressed.
Audrey was well taken care of at Kid’s Camp while the adults attended workshops that interested them. Some adults MIGHT have been given suggestions on which ones to attend.
Aunt Amanda covered the workshops on financial planning. Grandma attended workshops focusing on Large Motor Skills, she’s determined to get Audrey walking this summer. JJ and I spent most of the sessions learning about education and advocacy. We all attended the last session together. It was on the dreaded POTTY TRAINING. I’m pretty sure we are going to need all the help we can get with that one!
1.THIS!
It is unbelievably empowering to sit in a giant room full of people who just get it. All of a sudden you feel like part of a community. A huge community. That has your back and wants what’s best for your child. Raising a child with unique needs can be isolating. This conference is just what our family needs to remember that none of us are going at this alone.
