About 10 years ago, Gwendolyn came home from school and stated emphatically, "I want to be independent." She had watched her younger siblings grow up and she too had grown, matured, and developed initiative as a self-advocate, so perhaps this shouldn't have come as a huge surprise.
So we rolled out some paper on the kitchen counter and asked the big question, "What does independence mean to you?"
Before long, she had laid out her dreams and aspirations as a mind map with several big headlines: Healthy, School, Safety, Dating, Work, and My Own Apartment.
A Lot to Share
Wow, for someone who often responded to questions like "How was your day?" or "What are you doing?" with a blanket "ok" or "nothing" response, she sure had a lot to say on this subject. It gave us some insight into what was going on in her head. We could sense her passion and initiative were endless and that this conversation was long overdue.
After we jotted down some skills she would need to succeed in each area, we set to work developing these skills through demos, role modeling, checklists, and LOTS of practice.
Across the Finish Line?
Fast forward about 8 years and her relentless determination has helped her accomplish almost everything on her list. In 2021, Gwendolyn moved into her own place at the Marbridge living community just outside Austin where she works, learns, exercises, and flourishes! She is quite proud of herself...as is her whole family.
For a while after she moved into Marbridge in 2021 we felt like we had accomplished "independence." Everything on her paper seemed to be checkoff after all. Did we miss something?
Growth on her Own
Especially during the next year, we were reminded that she is human and like the rest of us, we are always growing. We all face new situations and challenges that we have to figure out on our own and with help from friends.
Gwendolyn is no different. Since moving out on her own, she has continued to grow in a few specific areas:
Self-advocacy: While independent, Gwendolyn has always naturally leaned on Mom and Dad to help out, to anticipate her needs, and to lend a helping hand. When she moved out, we would initially get calls about a tummy ache or her pills or items she needed for herself. We went through a transitionary period of shifting much of her caregiving...both to the Marbridge staff but also to her. Some items she would now need to do herself and others she would need to ask for help. This appeared to fly in the face of her independence because she wanted to do everything herself. She is learning that we all lean on the help of others at times and that actually shows maturity. She is speaking up for herself and her needs.
Self-advocacy II: Perhaps her biggest struggles (and growth) since moving has been how she handles social drama. Gwendolyn is an empath. What others say matters. She wants everyone to get along but when others, perhaps unintentionally, say hurtful things to her or her friends, she takes it personally. It makes her very sad. Oftentimes she would call crying, unable to deal with the pain. With our help, that of the staff, and time with her on-campus therapist, she is developing the skillset to properly contextualize this drama. She focuses on what she can control, acknowledges there is drama everywhere and everyone has bad days, and she also focuses on all the great things in her life so that the drama can be proportionately dealt with.
Self-care: On her own, she has taken advantage of the structure and opportunities to eat healthier and exercise more without the open cupboard and cushy sofa temptations of home. Gwendolyn has lost 20lbs and is so proud of her efforts. These are lifelong challenges for many of us and she is doing a magnificent job.
Self-giving: This year Gwendolyn has helped share the story of independence as a speaker at our Engagement Workshops during our roadshow visits with Down syndrome associations and other IDD communities across the country. I'm so proud to see her standing tall and helping others.
These are some of the underlying reasons why we've been so supportive of her independence journey. We knew that she would only flourish when she moved out of the house like her sister and brother. Only then could she have such new experiences, make some mistakes, and learn without the safety net of the parental umbrella to protect her.
Gwendolyn's Lifelong Independence Journey
These last two years have reminded us all that independence is indeed a lifelong journey. Gwendolyn is blossoming into a confident, happy, and determined young lady.
Especially given that adults with Down syndrome are living twice as long as they did in the 1980s (60s vs. mid-20s) and our now typically outliving their parents, the future is a bit unchartered for many adults with Down syndrome.
We wonder what lies ahead for Gwendolyn...so we can prepare her and ourselves for the next stages of her independence.
More work opportunities
More special relationships
Aging for herself
Watching her loved ones age and slow down
Death and grieving
These are common for anyone as they approach mid-life. Gwendolyn will experience these joys and sorrows like everyone else. Perhaps it is more helpful to assist her in building the skillsets to cope with these events and even thrive despite or even because of some of these future challenges.
Over the past two years, we have learned that independence is a lifelong journey. It's never too early nor too late to plan for future stages of independence. Our Essential Guide and Independence Workshops may be the catalyst your family needs to help your own self-advocate plan to flourish!
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
GET YOUR COPY HERE!
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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Letter of Intent Template
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This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.
Get your free template today and give yourself the peace of mind you deserve.