September 30, 2019

Down Syndrome Awareness Month – Interview with an Advocate & Mother

Happy Down Syndrome Awareness Month! Down Syndrome Awareness Month is a chance to spread awareness, advocacy and promote inclusion throughout your community. In honor of DSAM, we honor Wynter Kaori Fong and her mother Elena Fong! Elena Fong is a Bay Area based Down syndrome advocate and mother to two beautiful children—Wynter and Nova. In the following interview, Elena gives us an organic look into her home and discover what it is like to be a parent to a child with Down syndrome.

Check out Elena, Wynter and family on their social media!

Instagram: @lifewithwynterandnova

As a Down syndrome advocate, how do you work within your community to raise awareness?

“For me what works best is just starting a conversation wherever I go. When I’m out with the kids, and especially Wynter when someone is curious I welcome them to ask questions. When we’re at a park, the grocery store, or just taking walks. It’s been a challenge educating children on what Down syndrome is, and why Wynter sounds and looks different from them. I try to keep my answers simple and relatable for them. As you know little kids aren’t always very graceful with their comments and questions. But I’m learning the best ways to approach them, and to not take their comments personally. I also attend many local events to help spread awareness. I’ve done interviews for Mothermag, Frēda Salvador, and Big Little Choices podcast. I also worked with Changing the Face of Beauty and held a headshot clinic last year. We also attend local Down syndrome events/fundraisers as a family. Keeping the conversation going around Down syndrome is the best way to spread awareness.”

What can a community do to create a safe and accepting environment for kids with Down syndrome?

“To be INCLUSIVE! That is my biggest message. There has definitely been a shift, and I feel the change happening. I am seeing companies using more people with disabilities in their advertising which is amazing, and schools being inclusive in their classrooms. But there’s so much more work to be done. Parents with typically developing children should be talking to their kids about children with Ds, to encourage them to include them as well. That just because a child with Down syndrome may look/ or sound different that it isn’t a “bad” thing. It isn’t something to be afraid of, or to be looked down upon. When parents are with their children at the playground, to allow their child to ask questions, to come up to a child with Ds (or any disability for that matter) and just say hi! It would mean the world to a parent like me. Such a simple act of kindness goes such a long way. In general, as a society we need to be accepting and inclusive. To understand that people with Down syndrome are just that. People. They need to be given the same opportunities as any other person. Differences don’t seem so “different” once you get to know a person for who they are, not for what they have.”

Did you use any outside resources for support regarding parenting that really helped? (Anything at all! Spread the knowledge!)

“The biggest support around parenting a child with Down syndrome for me, was being around other parents with children who had special needs. My parent group at Wynter’s early intervention program has been huge. Learning from other parents, getting the support and answers needed made the world of difference in my confidence and ability to raise Wynter.”

What are some unique challenges you have faced as a parent?

“I wouldn’t say it’s necessarily unique, but the biggest challenge has been having patience. But I feel this is a challenge for any parent, but maybe just a little more so for my situation. Wynter has a hard time with transitions which causes major meltdowns at times. And being able to have the patience to help her calm down and regulate her emotions has been very challenging. Also, for obvious reasons, it’s taken her longer to reach her milestones, and it was hard in the beginning to understand and accept that she would reach them at her time. It’s only natural to compare, and so while most other 2-year-old’s are walking and talking. Wynter was still crawling and babbling. And still to this day she isn’t completely verbal, and just started walking about 3 months ago. But with the longer time it took for her to get where she is now, I’ve been able to really celebrate every little thing she has accomplished. They all become huge achievements and it’s made me appreciate and be in the moment with her and both my children.”

What are some unique benefits you have noticed since welcoming Wynter into your family?

“Again, not necessarily unique, but it’s been amazing how much Wynter has opened our eyes and heart. She has taught us the true meaning of unconditional love and acceptance. My empathy for others has doubled since having her. She is the reason why we have a whole community of people that we never knew we would cherish so much. She is the brightest light and just makes everyone in our family so happy. And she’s hilarious!”

“She makes us laugh every single day. She laughs big. She smiles big. She hugs big. She loves big.”

What is your favorite part about watching Wynter grow?

“Omg, that’s a hard one. All of it honestly is my favorite. Seeing the world through her eyes has been the best. Watching her learn new skills, seeing how proud she is of herself when she accomplishes something she’s worked so hard on. Hearing her laugh because her brother did something funny. Watching her play dress-up and have full-on conversations with herself in the mirror and I have no idea what she’s saying. Seeing her socialize and interact with her friends. Saying hi to everyone she encounters and giving them a hug. It’s all so good.”

What is the best piece of advice you can offer parents welcoming a baby with Down syndrome into their family?

“What I always tell new moms with a new diagnosis is to just love their baby. To enjoy and cherish every moment. It’s hard not to worry. I get it. I really do. But the truth is, is the hard stuff will always be there. You will learn what’s best for your family, and how to navigate and work through that hard stuff. Mourn if you need to mourn. I did. But don’t allow it to take your joy away. Trust me when I tell you, that baby is going to show you a big beautiful world full of love that you never knew you were missing.”

Thank you for reading! A special thank you to Elena for sharing her story with us.

Happy Down Syndrome Awareness Month! We can all do our part in taking the proper steps in educating ourselves about the Down syndrome community and being advocates within our communities!