When Andy was born 26 years with Down syndrome, I could never have predicted the rich life he would have today. Back then my mind was flooded with worry: would he live with us forever? would people be mean to him? would he have real friends? I had so many questions that gnawed at me even though I quickly just got to work being a first time mom of a newborn with feeding schedules, diaper changes, and play dates.
Interdependence
But today, so many of those questions have been answered in unexpected and rich ways that have taught me new and better ways to look at the world. He lives part of the time with us … when we can convince him to stay … and part of the time with my mom. He calls her house “my place,” and my house is “your place.” Our goal at one point had been independence and living on his own in an apartment, but it was his idea to stay with my mom. And we like this new interdependence where we all help each other. My dad passed away in 2017, so Andy is able to keep my mom company and take out her trash, and she’s helping him learn to do laundry. He will do anything my mom asks even though he sometimes rolls his eyes at me. In reality, none of us are independent living on Walden pond somewhere—life is better when we can rely on and support each other.
One church family in particular is also part of our daily interdependent web because they have three young adults in college who work as his staff. While Justin and I work long hours, they exercise together, fix and eat meals together at their house and our house, go on trips together, and they make sure he gets to all his other church and lacrosse activities. They are my bonus kids, and he’s part of their family too. We also give them training for future careers and help them save money to pursue their other goals. Andy dearly loves them, and they love him. I’ve heard some younger parents express concern that staff don’t count as friends because they are paid, but that hasn’t been true for us. Most of us have had coworkers and bosses who are truly our friends even though we also work together in a paid capacity. We truly care for each other and support each other in lots of ways, and even our staff who have moved on to other jobs continue to have relationships with Andy and show up.
Social Life
Andy’s social life is also richly textured with our own family and friends, his lacrosse team buddies, his “church” family, and his friends with disabilities. Andy and his two sisters like to go on adventures together: tubing, mini vacations, hikes, etc.
And we are very fortunate to live near and have the ability to visit lots of aunts, uncles, and cousins, so Andy has plenty of opportunities to spend time with family for Sunday dinners and holidays.
He also has coached high school lacrosse for the past 7 years and has a range of friends who are coaches and players. They meet up on the field almost daily between January, at college games, and at Taco Mac occasionally for wings.
He also has a church family that consists of lots of bonus brothers and sisters and moms and dads he has adopted over the years. They show up for all his milestones: his graduation party, church events, and birthday.
Andy’s best friend he talks to every night is another young man with Down syndrome, Mitch. For over twenty years and even after moving to different states, they still support each other, call each other out, tease each other, and start trends every single day. Another source of new friends and exercise is his Special Olympics Unified kayaking team and Circle of Friends, a social program for young adults with disabilities in our community.
At Andy’s 26th birthday party in January, I wasn’t even invited, and he had friends from church show up, boys from his lacrosse team, other friends from high school, and his “older brother,” Kenny and his wife who drove one and a half hours to be there! He loves them, and they love him. And he’s not even cheerful all the time. In fact, sometimes he’s downright grumpy, but he’s loyal and funny and shows up for them too.
Work
Andy also works two different jobs. He has worked part time at our local grocery story for 8 years—you can learn more about his story here. And he has also started a photography business with his Dad, and they travel together all over the country taking photos … usually on the way to and from dropping off his sisters at college.
Challenges
26 years later, life is much more fun than I ever managed, but there are still challenges we’re working through all the time. Navigating the complexity of support systems like Medicaid waivers can be really hard for me, but it’s necessary because those services are vital for maintaining Andy’s health and quality of life. It can also get overwhelming for me as a mom to constantly be the cruise director managing the staff schedule; tracking the payment systems, goals, and documentation; and figuring out Andy’s weekly schedule for the week. And transportation is always tricky–though his support staff are invaluable! For his part, Andy gets sad sometimes because he’s still looking for love and genuine companionship, he could use some more hours at work, and he struggles with getting anxious and overwhelmed sometimes. These are all common problems for people in their 20’s, but he needs even more help figuring it out.
One thing to remember is to be flexible because as soon as you think you’ve got everything figured out, one of the variables changes to throw you for a loop. So, it’s important to know what resources are available in your tool chest to make adjustments as needed.
What has helped?
I would say that the most critical supports for us have been our connections and networks, and those have come through so many different ways: the broader Down syndrome and disability community, our family and friends, our neighbors, our coworkers, our lacrosse family, and our church family. They help Andy enjoy and contribute to the community in meaningful ways. Each family has to step back and see which networks they belong to that can provide that long term source of community. Second would be accessing the state, federal, and local services and supports like Medicaid waivers, job coaching, healthcare, and housing to make sure our loved ones have their basic needs met. It’s also been really critical to give Andy opportunities to develop his skills and talents and to recognize where we can help amplify his interests.
Adulthood is often called the cliff because of the steep change in services, and it truly is challenging to leave the consistency of the school years BUT with a network of friends and family, access to supports and services, and the development of the skills and talents of young adults with Down syndrome, we can build joyful and busy lives!
Resources
EMP 104: Family Engagement for Parents with High School Transition-Aged Children with Disabilities (free online course about setting employment expectations for students with intellectual disabilities throughout the school years)
Down syndrome Transition Handbook by Jo Ann Simons and Stephanie Meredith (free book about transition from childhood to adulthood)
*posted with Andy’s permission