When asked about how he heard about “A Purposeful Day,” Catholic father of four Joe Muskett told the Register, “The Down syndrome community is a very small town.” 

However, in this tight-knit community that spans the globe — thanks to the amazing efforts pioneered by Dr. Jérôme Lejeune, who first detected the chromosomal difference — Kate Ashbrook saw a hole that needed to be filled in her own community. 

Speaking to the Register from her home in the Washington, D.C., area, the mother of three daughters calls it the “cliff of adulthood.” 

“This expression really refers to the age of 21 or 22. That is when school ends for a lot of our kids in the public-school system, and there is this immense drop off in support and opportunities for these families,” Ashbrook expounded. 

Abby, Ashbrook’s middle child, now 13, has Down syndrome. Currently thriving in school, she is building friendships and playing sports, but anticipating this drop-off — where years of education and socialization would stop, stifling her very active and engaged daughter who is rambunctious and loving. Consequently, Ashbrook dreamed of a way to carry on her dear Abby's ambition. 

“And my eyes really began to be open to the need for adults [with special needs] to have purposeful days. As a mother, I just really couldn’t imagine after all the therapy and all the school and all the advocacy, that we would work so hard to reach milestones, and then get to this point where we would watch Abby sit at home and probably regress or be depressed because there were such limited opportunities potentially when she graduated.” 

Finding Purpose

Although many companies across the country offer job training and employment, hours are typically only 10 to 12 each week for adults with special needs. So with this understanding and belief that families deserve better, A Purposeful Day was born and is now a thriving center of community and engagement among adults with not only Down Syndrome but other intellectual disabilities. 

“We tackle life skills to improve independence,” Ashbrook told the Register, adding that all of the participants have a sheer love for learning. 

“We’ll have speakers come in and talk about an area that someone expressed interest in. We go out into the community. One thing we really want to communicate to these individuals, while we’re building relationships, is that you matter in your community and you’re valuable in your community,” Ashbrook explained. 

A large part of what the group does really hones in on the needs of businesses and churches in the area. “We roll silverware for dinners for the food fundraiser that a local church sponsors; we have done a lot with the lost dog and cat animal rescue. We really try to find interests that people have, and show them even if you might not have traditional employment, you can contribute to your community.”

As Ashbrook notes, this type of engagement becomes very fulfilling “because you’re working together towards something, a mission you believe in, and you get to see how it impacts others around you. And that’s so important to these individuals and so dignifying to them.”

Serving on the board of A Purposeful Day, Brian McGuire says he is proud to be part of this innovative work Ashbrook has started. “Kate is doing a rare thing. She saw a real need families like hers face and invented a community-based solution, then invited strangers into that community and is doing the day-to-day work of building it out herself,” McGuire said, adding: “It’s easy to give money to a worthy cause, but to build something new, and tend to it day in and day out, is really admirable.”

Catholic Calling

Joe Muskett’s daughter was one of the first adults that Ashbrook reached out to. Megan, the eldest of four children, now in her late 30s, has been part of the organization since its inception in 2022.

“I think it’s amazing,” Muskett told the Register, speaking about Ashbrook’s work. “It’s exposing it’s a win-win for everyone. It’s exposing everybody to what’s really helpful. “

“Now, a lot of times when you’re at a private school, you may not have that opportunity to see the variety of young people; and now the bishops are doing an outstanding job by bringing in not just students but also by bringing in people to work in schools, in churches, who have special needs.”

As parishioners of St. James Catholic Church in Falls Church, Virginia, Muskett serves on the board of A Purposeful Day, which is completely donor-funded. Within the Arlington Diocese, Muskett hailed all the great work being done under Bishop Michael Burbidge’s leadership, who serves as chairman of the U.S. bishops’ Committee on Pro-Life Activities and episcopal moderator of the National Catholic Partnership on Disability. 

Nineteen diocesan schools currently enroll students with special educational needs. The bishop said it is his aim that every part of the diocesan community be able to accommodate students with special needs. The four high schools within the diocese also have programs that serve students with intellectual or developmental disabilities. This is really about creating a true culture of life that “recognizes the dignity that is ours as children of God, every life — all life comes from God. God creates us uniquely in his own image and likeness,” Bishop Burbidge told the Register. 

“When we embrace persons with disabilities, we’re just living out the Gospel. And we know when people are together with unique backgrounds, unique personalities, unique limiations, that’s when all, a full community, is celebrated. Just as Megan goes into that school: What happens? She’s connected; it’s relational for her. Her eyes light up when she begins to encounter the students, other colleagues. That makes us fully alive as human persons. That’s what those kinds of opportunities will do for all of us, including those with disabilities.”

A devout Catholic and a daily communicant, Megan is happiest when she is volunteering at St. James Catholic School during the week, and if she had her druthers, she would be there every day as a teacher. Her siblings all have the same aspirations, teaching at different schools, and they all hold master’s degrees in special education. 

Asked about recent studies that have found siblings who grow up with a brother or sister with Down syndrome are more compassionate and understanding, Muskett said this is indeed true for his family. 

“That’s the beauty of what Bishop Burbidge is doing: exposing all these kids [to the gift of special people]. So there’s a lot of times there’s that fear to talk to a special-needs person. Now, it’s almost breaking down walls for everybody. Now that the special-needs individual is developing technical skills, and friendships; and at the same time, these children who might not have had the opportunity to be exposed to special needs — they’re in their classroom with them. Like at St. James, students learn that this is a person of God.”

Thriving Together

The need for community for parents who have children with special needs is also extremely important. Parenting children with special needs is not only a privilege. As Ashbrook said, “It is a huge responsibility, financially, physically of our time. You imagine that around 18 to 22, you might be becoming an empty nester, friends are beginning to think about retirement, or maybe they’re moving to a different place. And for parents with children who have special needs, they’re taking on more caregiving responsibilities. And that’s not even speaking to the cost for these families.”

So in building a community for families to grow and thrive together, “parents come together, and we get to share a little bit of the privilege and the joys and the responsibilities among each other a bit.”

Ashbrook says Abby is hilarious and a breath of fresh air in our world that becomes so fixated on status. “She cares nothing about success or status in life. She wants nothing from you. She just loves all people so well. I joke, with her genuineness, though, definitely comes a feistiness. She is not all sweet and sunshine. She’s just like any other human,” Ashbrook said.

Taking the time to really know someone with Down syndrome is a challenge and opportunity Ashbrook thinks everyone should take this World Down Syndrome Awareness month and beyond. 

“To get to know Abby, though, requires a person to slow down ... taking the time to engage with her. It requires slowing down, which is really hard for us as a society.” 

Ashbrook added that, for these special souls, “They’re navigating this world in which they’re different than a lot of people, and that comes with real challenges and frustrations and hurts. But in spite of that, Abby’s really great at brightening everyone’s day.”

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