• Steve Friedman

What Does Independence Mean To You?

Planning Futures with our Adults with Down syndrome



Earlier this year, I shared how our kids' dreams should be ours. This website 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 prepare to go off to college next year. This is what she wants. She wants to move out, to live on her own or with friends, to take care of herself, and to make her own decisions.


It would be easy for us to say "no." She can certainly live with us for years. But like her sister and brother, we want 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, I'm confident when she gets out from under the protective umbrella of the family home, she will learn and grow, and beam from ear to ear with pride.


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 with additional independence she can 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.



It's Never Too Early

So we are making plans for Gwendolyn to realize her dreams and move out as early as 2022 after her brother heads off to college. We began this plan 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 were 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). We'll cover some critical early steps toward independence in our January blog.



Plans Are In Motion

Now, we are evaluating a wide range of places across Texas that provide a safe place where she can grow personally and socially. We began researching and visiting many communities in early 2020. COVID has placed a pause on some of our research, but we continue to help Gwendolyn practice her independence at home.


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.



It's never too early to plan. Be sure to include your person with Down syndrome in their plan.


I'll be sharing some of the considerations and options in my December post. Subscribe to our website here so you don't miss a blog!


Take care and have a wonderful Thanksgiving.


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.





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Look for updates on The UPLifting Guidebook Project on our website.

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