Julie Messina plays many roles in her day-to-day life—she’s the sister of KAYU founder Jamie Lim, the mother of a child with Down syndrome, and the President of the 3-21 Foundation, a non-profit organization whose mission is to promote advances in education and cognition for people with Down syndrome. But before she co-founded the Foundation, she was a parent struggling to understand what a diagnosis of Down syndrome meant for her son, Evan. Her experiences led her to rethink socially-ingrained ideas around Down syndrome and to advocate for research-based approaches to education that help students with intellectual disabilities like Down syndrome thrive in an inclusive academic setting. In honor of Down Syndrome Awareness Month, we spoke to Julie to learn more about her unique path to founding the 3-21 Foundation. Interested in supporting the 3-21 Foundation’s work? Be sure to check out our new Batik hair accessories collection, which benefits the Foundation with every purchase.
Interview With The Founder
KAYU: You’ve had a very personal journey with Down syndrome—and one that you’ve said challenged a lot of your pre-existing beliefs. Many people still have a flawed or outdated understanding of Down syndrome. Can you explain what some of your ideas about Down syndrome were when your son was originally diagnosed, and how these have changed over time?
Julie Messina: I grew up in the 1970-80s in Malaysia, where people with disabilities were hidden away. They were kept in their homes—kids did not go to school and adults did not venture out into the community. Thus I had no exposure to disability and was afraid of it. When we received our son Evan’s diagnosis, I was devastated. Of all the disabilities, a cognitive disability was the hardest for me to comprehend; I valued intellect above all else at that time. But Evan was given to me for a reason—to heal me of my blindness and prejudice against disability and restore me from intellectual elitism. I began to see value in all human life.
KAYU: How has living with a son who has Down syndrome changed your day-to-day life?
JM: To be honest, it has and it hasn’t. Having a child changes your life, whether your child has special needs or not. Life is busy managing Evan’s healthcare and education needs, but our lives would be busy anyway if he didn’t have Down syndrome. Something else would have come up! The truth is, we are all “disabled” and all “enabled”—just in different ways.
KAYU: When was the moment you decided to start the 3-21 foundation?
JM: The 3-21 Foundation was founded because, in the painful early years after Evan’s birth, my husband and I found new friends in similar circumstances, and together we all realized we had been given the opportunity to do something great. Each of us had been gifted with specific skill sets, which we had honed professionally for years—and here was a chance for us to come together to help not only those we love but others like them who are the most vulnerable in society.
KAYU: What is the most rewarding or exciting aspect of your work with the 3-21 Foundation?
JM: We’ve had families tell us that we’ve broadened their perspective on what they thought was possible, and that has given them hope for the future. That’s truly rewarding. And there’s nothing more exciting than seeing our students grow up to become all that they are meant to be.
KAYU: How have you seen education around Down syndrome shift in the years since your son was born, and since you started the 3-21 Foundation? Why is it so important to advocate for unique education approaches for those with Down syndrome (as the 3-21 Foundation does)?
JM: Down syndrome is the most commonly occurring chromosomal condition, affecting all cultures, races and socio-economic groups. Given medical and educational advances in recent years, the prognosis for individuals living with Down syndrome is better than ever, but there is still much negative bias and misconception. The majority of new parents report that while receiving the diagnosis, the negative aspects of Down syndrome, in particular, the cognitive challenges, are often emphasized. Consequently, and heartbreakingly, there’s a 67% termination rate of pregnancies diagnosed with Down syndrome in the United States, over 90% in some countries, and close to 100% in Iceland. Fear of raising a child with an intellectual disability has resulted in these awful statistics but research shows that many children with Down syndrome can learn when taught in a way that optimizes their strengths and abilities.
A body of evidence has surfaced over the last few decades, suggesting a distinctive learning profile for individuals with Down syndrome. For a variety of reasons, this has been slow in reaching special education professionals, and even slower in translating into teaching strategies that can be used in traditional education settings, such as our public schools. The 3-21 Foundation was created to serve as the vital triangular link between research, home, and school to bring the fruits of research into practice. The approach we teach capitalizes on the relative learning strengths of children with Down syndrome.
This specialized instruction, applied in inclusive classroom settings, leads to more effective education for students with complex learning needs. By advancing these teaching approaches, our Foundation hopes to improve educational outcomes, thus improving lives for people with Down syndrome. Our ultimate goal is for people with Down syndrome to become valued, contributing members in our communities, living independent and fulfilling lives.
KAYU: What is the #1 thing you want people to know about Down syndrome?
JM: Living with Down syndrome is not easy – we certainly have our challenges. However, Evan has a joie de vivre and a love for life that is unparalleled. In a recent Harvard survey, 96% of people with DS said they liked how they looked, 97% said they liked who they are and 99% are happy with their lives. How many of us can say that about ourselves?
Don’t be afraid to interact with people with intellectual disabilities. Don’t be like my former self—afraid of what I didn’t know. Take the time to have a conversation with that person in your community. You might be surprised by what you learn. I was lucky in that it was forced upon me. The miracle that happened to me was that I learned to see and appreciate Evan’s gifts. He has taught me patience, compassion, creativity… these are the gifts our world needs more of.
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