A Day With…Jennifer O’Connell

Executive director of Down Syndrome Network Arizona

6 A.M. >> CENTERING GRATITUDE

I start my day with what I call gratitude practice. I sit for about 15 minutes in silence and do a little chanting and singing. I’m grateful for my health, children, family, home, work and friends. I am a tea lover and the former owner of an organic, plant-based, vegan tearoom and holistic healing spa, so I make a matcha latte or rooibos chai for my morning drink.

I have a 15-year-old son, Liam, who has a dual diagnosis of Down syndrome and autism. He has behavior therapy, and his behavior therapist shows up to help with the transitions of getting up and ready for school. I usually make a healthy, organic breakfast and lunches to go, and then Liam heads off to school.

9 A.M. >> ALL THE HATS

Down Syndrome Network Arizona is dedicated to educating, advocating for and supporting all those touched by Down syndrome. The organization has been around for over 20 years, and I’m the only full-time staff, along with two part-time staff and a self-advocate, which is somebody with Down syndrome.

As the executive director of a small nonprofit, you wear many hats and there’s no typical day. I love this because I have a social entrepreneurship side where I can be doing strategic planning and then go micro, such as creating something on social media. I do everything, including budgeting and finances, securing donors, marketing, volunteer recruitment and planning ongoing programs and gatherings in the community, seasonal celebrations and two signature fundraisers — a spring gala and walk in the fall as the ASU Homecoming Parade’s grand finale. We’re all about awareness celebrations and meaningful connections.

11:30 A.M. >> CONTINUING EDUCATION

Medical outreach and education are other aspects of my role. I train residents at Phoenix Children’s about Down syndrome and inherent bias, including role-playing on delivering the diagnosis. I provide training for schools whose teachers and paraprofessionals want to learn more about Down syndrome.

12:15 P.M. >> THE LUCKY FEW

One in 700 babies is born with Down syndrome and we guesstimate there are about 10,000 people with Down syndrome in Arizona. We meet and greet 30 new parents every year who get the diagnosis during pregnancy or after the baby is born and have all kinds of questions. They’re navigating a range of emotions at first, and it’s overwhelming. Once you get past that, you know that you are truly part of the lucky few and are super fortunate. Down Syndrome Network is present for all the transition points — getting the news, getting services, starting school, graduation, adulthood, aging, dying and death.

1:30 P.M. >> CALL TO ACTION

There are a lot of advocacy efforts happening right now that take up a good part of my time. I meet with advocates and community leaders, and Down Syndrome Network also cooperates with other groups that serve people with Down syndrome or developmental disabilities. I gather all the information and get it out to our families in a newsletter or on social media so they can contact their legislators.

3 P.M. >> UNIVERSAL GIFTS

A few days a week, I pick up Liam from school and take him to swim and his occupational, physical and speech therapies. Luckily, I have a very good support network because Liam requires care all the time.

I am writing a book tentatively called “L.I.A.M. (Love I AM)” about the 21 gifts and graces of Down syndrome. There’s a lot out there about how we, as caregivers, doctors or therapists, support our loved ones with Down syndrome, but there’s not a lot written about everything individuals with Down syndrome give to us. 

I’ve come up with a long list and am condensing it down to 21 of these gifts, such as wonder and imagination and the art of slowing down. I’ve written four so far, and I’d like it to be interactive. Once I get done with Liam’s and my story about how the gift has touched me and our family and how Liam contributes to this, I’ll ask other people how their loved one is giving a gift. I’d like to start collecting their stories and videos and create a project out of it. The ultimate goal is greater awareness for people outside the Down syndrome community because these are universal, spiritual gifts.

7 P.M. >> MINDFULNESS

I make something healthy for dinner. It can be simple, but it’s clean and organic or plant-based. Liam is really into cumbia and Latin music, so we drum and do a lot of dancing in the living room. When I get a chance, I incorporate restorative and slow-flow yoga practices into my week to shut everything down.

I’m trying to be mindful of what I consume. Not only food, but also the kind of information I take in, the cleaning products around my house and the stuff I put on my skin. Once Liam’s down, it’s my time to take in the information I want. I listen to a variety of topics that run the gamut from work-related, such as fundraising, to something fictional and fun or a guided meditation.

To learn more, go to dsnetworkaz.org.