Updated: Apr 29, 2022
In Search of Independence for Adults with Down syndrome
We all want our independence. It's a natural human drive. A recent study showed personal happiness is most tied to autonomy - not money, material things, or even love, but autonomy!
"She has Down syndrome!"
When Gwendolyn was born in 1994, we went through the normal circuit of fear, sadness, guilt, concern, and love. We delved into stacks of books on raising newborns with Down syndrome and contacted local Down syndrome organizations and public health resources. Soon, we were overwhelmed with advice and decided to step back and just love our new baby.
The next 18 years were consumed with gratefulness, joy, encouragement, and pride. Gwendolyn was a spirited, if not stubborn, young girl who learned to read, write, and play with her younger siblings and her classmates.
Suddenly, at 18, we awoke to realize her public school experience was coming to an end. While it was far from perfect, Gwendolyn learned a lot as did we. We had grown accustomed to the counselors framing the next year and we followed. But now we needed to quickly figure out the next stage of her life.
We were fortunate to find The Friends of Down Syndrome, a local organization that now serves over 70 adults with Down syndrome. The program is customized to provide a learning environment that has supported Gwendolyn's independent ambitions. This is another positive step on her journey. But what is next?
In retrospect, I've learned two major points:
This should have been a lifelong plan, made years before and adjusted along the way. Our piecemeal, short-term planning was not preparing Gwendolyn or the family for the many changes ahead.
This plan could not be my plan. It was a family plan but most importantly, it was Gwendolyn's plan. Nowadays, they call it "person-centered planning".
So we all soon sat down to try to catch up and put a plan together. It started with a simple question that had been absent for 20 years, "Gwendolyn, what do you want?"
Gwendolyn had always been a strong-willed, independent-minded teen, but her response surprised us. "I want to be independent!"
I guess that really shouldn't have surprised us. She (mostly) wanted to do things for herself around the house. She no longer wanted us to join her at socials or events. Drop off was fine. She idolized her brother and sister as they grew up, dated, drove cars, went to college, and moved out of the house. Like others, her dreams were formulated by her surroundings and she saw no reason she couldn't have the same.
We gathered around a huge butcher-block piece of paper and mapped out her Independence Plan. Her big dreams were:
Wow! We hadn't really thought of that. "Independence" is just a word. But moving out and getting married is for real!
But as we delved deeper, we understood she wanted what everyone else wants. She doesn't want to be treated like a baby. She doesn't want to be told what to do or to have to check in with others. She wants love and autonomy. And who were we to stand in her way? Isn't that what all parents want for their kids? Aren't those two big things we mourned back in 1994, expecting such dreams had vanished for our newborn?
Now she wanted this and we wanted to support her.
Today, I wanted to share my thoughts about moving out. I'll set aside my thoughts on her marriage plans for later!
"What do you need to be able to do to move out?
What do we do for you now that you will have to do for yourself?"
Our list grew. But nothing on the list seemed insurmountable. With some discussions, checklists, and practice, Gwendolyn should be able to maintain her own hygiene, run laundry, clean dishes, make meals, keep a job, and take transportation.
It would have been great to have had this plan years ago. It required a shift in our thinking. It required us to put some more faith in Gwendolyn and be prepared to let go. We knew it would take some time to tackle the plan to the satisfaction of Gwendolyn and ourselves, but this would be the greatest gift we could ever give our kids...including Gwendolyn. So we started.
Over the past few years, Gwendolyn has learned a lot. Her face beamed with pride when she ran her first load of wash. She now makes eggs and bacon for breakfast... "by myself." She works at Firehouse Subs four days a week (before COVID-19) and she walks to work and bikes around the nearby park all by herself. She's learning to manage her Weight Watchers food diary and is trying to make health the cornerstone of her independence. When asked if she is proud of herself, with a glimmer in her eye she says, "Yes...I am. I love myself!"
Leap of Faith
Now, we are getting ready for the next big step. Before COVID-19 hit, we began to survey different types of independent living (from apartments to group homes and special needs community living). We have seen a wide variety of places that could be suitable depending on Gwendolyn's level of independence, our ability to trust, and the financial resources available. We are focusing on a couple of options that could be a perfect fit for Gwendolyn.
COVID-19 has put a bit of a wrinkle in our plans. But Gwendolyn is continuing to focus on her independence at home and practice the tasks and steps she's been learning. Once the world opens back up, we believe we will still be on track to help Gwendolyn realize her dream of independence.
The UPLifting Guidebook Project sprouted from this amazing journey. This is a mission to provide guidance to families so they can support the independence of their adult with Down syndrome. The Project is determined to provide inspiring family stories and useable tips for families, regardless of where they are in the process.
Independence is defined differently for everyone. For some, it may focus on personal hygiene, for others living in a group home, still others dream of going to a college program or having their own apartment. But what is clear, is that each of us needs to develop a long-term plan with our loved one with Down syndrome at the center of the process.
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
Please subscribe to our website to get more updates and information along the way. If you would like to participate in a family interview or share your concerns and needs during our 2020 research phase, please let me know.
Look for updates on The UPLifting Guidebook Project on our website.