Updated: Apr 29, 2022
In Search of Independence for Adults with Down syndrome
Challenges during COVID
This pandemic has been tough on all of us. Certainly, our adult sons and daughters with Down syndrome are amongst the most vulnerable. They are most accustomed to a routine. They need ongoing, trained education, and friendships. For most, all that has been interrupted. If our adults worked, that likely stopped. If they went to school or day programs, that likely stopped. If they socialized at school or at dance parties, that stopped too.
To compound these issues, some reports indicate people with Down syndrome can be amongst the most compromised population, not necessarily because of their extra 21st chromosome, but because of other conditions common with Down syndrome such as heart defects/disease, respiratory illness (often resulting in sleep apnea), obesity, and diabetes. So even as communities open up, a return to school, work, or group homes is not necessarily recommended. Take a look at the latest information from the Global Down Syndrome Foundation in conjunction with many other DS organizations.
Activities for Adults with DS
What can your independent-minded adult do during COVID-19:
Develop new routines
Keep learning with reading time and workbooks
Arts & crafts stations
Online classes from local/national organizations including GiGi's Playhouse, your local Down syndrome, ARC, or community associations
At home independent training
Most of you have likely discovered many of these during the last five months.
Given our focus at The UPLifting Guidebook Project, I'd like to provide some further ideas for your adult with Down syndrome at home:
Cleaning chores (bedroom, bath, common areas)
Washing (laundry and dishes)
Exercise (walking or biking in the neighborhood on their own)
Cooking (from sandwiches to stovetop)
Technical (keeping track of online meetings and logging in to Zoom etc)
Each of these may need a little guidance on a checklist, but most can do each of these tasks. As a matter of fact, they want to do these tasks. Whether your adult wishes to live on their own or their plan is to stay at home with you, these are skills that build their independence, feeling of self-worth, and pride.
Quick shout out to our daughter Gwendolyn, who is doing great on her independence journey. She's making the most of the pandemic with a routine including a couple of Zoom classes (one on communication and one on art) per week. She is doing lots of chores, is biking around the park by herself for 30 minutes at least three times a week, and perhaps her biggest thrill is making a breakfast of avocado toast, fried eggs, and turkey bacon most mornings, all by herself. We are so proud of her!
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.