We recently attended the National Down Syndrome Adult Summit in Detroit MI earlier this month, and I have to say it was great to be there. My husband Andrew, was a guest speaker, talking on the subject of “Setting up a Special Needs Trust” for your child (which is such an IMPORTANT subject).
I was proud of him and he did so well giving out vital information to parents who have children with disabilities. If you or anyone you know need information on that subject, you can visit his website.
What I got out of the conference was more than what I went for. Â Interacting with all the parents of young adults with Down syndrome made me proud to be a part of that community. They were there to get answers and information on how to be a better parent and navigate life with their young adult to make it better for them. Just to be around moms of older children with Down Syndrome was so helpful, and helped me in ways I didn’t know I needed. Speaking with them made me feel at home, and kind of more normal. When you are sitting at a table of moms, whose children all have the same eating problems, it makes you feel like you don’t really have a “problem” at all. It’s more like a “situation”. It was so fascinating for me to watch the young adult community (millennials) with Down Syndrome because I am not around them much at all. To see them dance, laugh, giggle, and interact felt surreal.
When I see a young adult with Down Syndrome out in public on a rare occasion, I find myself staring at them like a weirdo. I’m curious because I obviously want to know what Grayson’s life will look like when he is older, and I stare because I rarely get to interact with them. Imagine being in a world where you are surrounded by all young adults who have Down Syndrome. If you FINALLY saw a young adult who didn’t have down syndrome, you would probably want to stare…because you want to see how your child will be when they grow up. At this conference, young millennials with Down Syndrome were all around me, and it felt nice. I felt like I was saturated in a world I had recently become a part of, rather than an outsider looking into a world I didn’t understand. Kind of like growing up bi-racial….I digress. That’s another blog for another day.
As an entrepreneur, having run a business for 16 years, meeting other entrepreneurs was exciting to me. There were 4 of them altogether, and they all used their creativity to launch their business. They were awesome, and their businesses are run with their families, which was great.
John Cronin, from John’s Crazy Socks, was there, and I was so excited to be able to meet him!
We have bought a few pair of socks, which we love. At first, I thought I was doing a good thing by supporting a small business and helping someone in the Down Syndrome community…… only to find out jokes on me… this millennials’ business is 10x greater than mine! He has made history, by being the first person with Down Syndrome to become a self-made millionaire….and by age 22! Talk about #goals! His story is a great read, and his socks are even better! They can spice up a boring uniform, or basic suits. He has animal socks, presidential socks, holiday socks, and of course his famous T-21 socks. Just click on the word socks to see his collection.
He had a team of workers at the conference, not just his family. He makes it a practice to mostly hire workers with disabilities as a way of contributing to society. I recently read a testimonial of one of the workers who suffered from a stroke at the young age of 34. She hasn’t been able to work since but has been employed by John’s Crazy Socks, to write for his blog. You can learn more about his path to becoming a business owner here.
I also met an amazing woman Ashley DeRamus, whom some of you may have already heard of. She is beautiful, smart and determined.
Not only does she own a traveling boutique, (which showcases clothes all over the world), but her clothing line was also debuted in the latest fashion show in Orlando this past month. She has over 43 medals for swimming, and her latest aspiration is to be able to say the Pledge of Allegiance in a public forum in all 50 states to bring awareness to Down Syndrome. She is a national advocate for people with Down Syndrome, a world public speaker, a leader of a foundation for people with Down Syndrome, and a sailor! I’m tired just from writing all of these accomplishments. Talking to her mom was really special. Her mom is tired of course (I can’t imagine running a schedule like that!). You can purchase her clothes here at Ashley by Design.
I love her slogan,
There were two more business owners, one of whom I didn’t get to meet because he is quite the social butterfly. His name is Blake Jackson, and he is an artist and self-advocate. You can see his artwork pictured below:
Lastly was Keaunna Figgers, whose project is called C-21. Keaunna designs T-shirt that brings awareness to others by using chromosomal visuals, in an artistic way, to help spread the message of Down Syndrome. Her entire family was there helping support her and her mission, and she had a big display of all her different t-shirts. She is seen wearing one here (which my husband has purchased and has worn numerous times). The link to her site if you would like more information, is here.
There was a college there as well, who has a secondary on-campus degree for people with disabilities, which almost made tear up. I was feeling sad when he was born, thinking about the things he would have to miss out on, campus life being one of them. But there are now schools who have specific degrees for them, and allow them to live on campus to pursue them. Syracuse University is one of them, with their Post Secondary school for people with intellectual disabilities called The Taishoff Center for Inclusive Higher Education. I mean how freaking awesome is that? Talk about increasing equity and not just equality for the disabled community! It’s one thing to try to level the playing field by giving everyone the same tools they need to succeed. But it’s a whole other thing to give people exactly what they NEED to succeed. The Taishoff Center does this for the Down Syndrome community, and I give my hats off to them for being so #woke!
It seemed like the new opportunities for people with Down Syndrome were becoming endless, and it really released a little bit of the anxiety I have when I think about Grayson’s future.
I hope anyone reading this, feels hopeful for their child with Down Syndrome and their future. They will be limited NOT by their disability, but by the lack of ability to dream big and go after what they want. Isn’t that what we all want for our children? For them to live to their fullest potential, and achieve what God has placed them here to do? Small minded thinking is the greatest hindrance to the Down Syndrome community, not their extra chromosome.
More pictures from the conference.
No Down Side 