Planning Futures with our Adults with Down Syndrome
Independence for our children with Down syndrome can be quite scary, regardless of their age. In an earlier post, I shared how our kids' dreams should be ours. This article is about adults with Down syndrome and their pursuit of independence.
Defining Independence
However, "independence" means something different for every person and family. Independence is personal hygiene and helping around the house for all of us at some point. Many adults with Down syndrome progress to such independence in the house as laundry, cooking, or cleaning. Others go to work, school, or the gym by themselves. These varying levels of independence depend upon their capabilities, as well as the comfort and confidence of the individual and their parents or caregivers.
Oftentimes, I believe the parents are more of a limiting factor than the individual. Adults with Down syndrome often just want to emulate siblings, friends, or characters on TV who drive, date, make their own decisions, and live on their own. Parents, on the other hand, are fearful and protective of all our kids. Naturally, that care is heightened for our children with special needs who may appear less capable and more vulnerable. That's our job as parents, but a little bit of prudent risk can pay tremendous dividends.
Independence Can Be Their Spark!
As difficult as it may be to let go, I'm a big advocate of supporting our kids' dreams of independence, wherever they take us.
Our daughter, Gwendolyn, has watched her younger sister live on her own and her brother prepares to go off to college next year. This is what she has wanted. She wanted to move out, live on her own or with friends, take care of herself, and make her own decisions.
It would have been easy for us to say "no." She could certainly have lived with us for years. But like her sister and brother, we wanted her to be as happy as she can be. Happiness to Gwendolyn is to have that independence and learn new things. As with her siblings, we were confident that once she got out from under the protective umbrella of the family home, she would learn and grow, and beam from ear to ear with pride.
In the fall of 2021, Gwendolyn moved into an independent living community. While it was a transition for both parents and self-advocate, she is so happy (and we are enjoying the empty-nester life we thought might allude us). She is growing and learning, busy and confident. It's the best decision we all could have made.
Like her siblings, we all reach plateaus and need a spark to learn and grow further. Being provided the opportunity to be independent is that spark. Gwendolyn is amazing and I believe her additional independence is sparking her to grow even further to have that full life.
We Must Plan For Their Futures
Additionally, the harsh reality of mortality cannot be denied. Eventually, our ability to take care of Gwendolyn's daily needs will diminish. At some point, Gwendolyn will not be able to live with us. Though her siblings and extended family love her dearly, it has never been our intent for them to be responsible for Gwendolyn's livelihood. We especially want her sister and brother to live their greatest life as well. We are sure Gwendolyn will remain an important part of their lives, but they need to have the freedom to live their own lives and make their own family plans. As we've told them both, one day they will likely be called upon to be her guardian, but not her caregiver. Read Madolyn's reflections here.
It's Never Too Early
We began developing Gwendolyn's Independence Plan including residential living several years ago when Gwendolyn finished high school and we all realized the guidance of the public education system was gone and a myriad of questions was thrust upon us. Click here to take a peek at Gwendolyn's Independence Plan. During that process, we realized we should have begun setting the stage almost at her birth. So many considerations, not the least of which are finances and public support (read: waiting lists).
Do Your Homework...Together
We began researching and visiting many communities in early 2020. COVID placed a pause on some of our research, but we resumed in early 2021 and encouraged Gwendolyn to practice her independence at home in the meantime. In the year leading up to Gwendolyn's big move, we evaluated a wide range of places across Texas that provide a safe place where she can grow personally and socially. Jennifer and I checked out over 15 places and then brought Gwendolyn for tours with our shortlist of three. She was always a key part of our discussions, evaluation, and decision.
Independence for your adult with Down syndrome is a personal decision that each family must evaluate. Consider your options and make a plan. Just turning a deaf ear and delaying the family talk is not a prudent option. No one wants to be forced into emergency arrangements for your adult with Down syndrome when you may suddenly be unable to provide proper care or fully evaluate available options.
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 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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These worksheets provide a framework for developing and maintaining your own roadmap to independence. Tabs include Creating your Independence Team, Daily Hygiene & Chores Checklist, Managing Social Circles, Financial/Benefits Support, and Housing Options.