The Who, What, When, Where, and How of Independence for our Loved Ones with DS
Independence. It sounds so freeing, so autonomous, and so empowering! Yet when we consider independence in terms of our loved ones with Down syndrome, it often conjures up words like unrealistic, unattainable, or unknown.
What does "independence" mean to you? How would you even begin? What are the pitfalls along the way?
These are the questions I've heard time and again...from my wife and myself, as well as from so many other parents. Finally, it became the catalyst for The UPLifting Guidebook Project which seeks to answer those questions and many more, and to take the mystery out of independence by laying out options, describing the pros and cons of each, and how to tackle challenges like fostering independence at home, expanding communication skills and social relationships, continuing education and work for adults, and unlocking health challenges, financial resources, and housing options as well.
Today, let's start with the basic questions around independence.
This sounds simple. Independence is for everyone. But the devil is in the detail, as they say, because there is a broad spectrum of abilities and interests across the Down syndrome community. So while, yes, independence definitely is for everyone, the definition applies differently to everyone and at different ages. What applies to your family often depends on the abilities and resources of your loved one and family. So starting early to develop these is critical.
For younger kids, independence starts with basic hygiene like brushing teeth and potty training. Later, independence may involve socializing and communicating on their own, some with the use of adaptive communication devices. For adults, independence may mean contributing more around the house or it could include a job or a place of their own. Don't constrain your vision of what independence can be - aim high!
Definitely starting early is essential. As parents and caregivers, we can't do everything for our children and then expect them to do for themselves when they finish high school. We can't expect them to take care of their own hygiene if they never learned how. And we can't expect them to communicate with others if they were never provided the proper tools to learn and converse how best they can.
Independence should pervade all facets of their life, so they can do for themselves at home, at school or work, and within the community. More and more, this may include independent housing - perhaps supervised or in their own apartment. But it can also be accomplished at the family home, as long as they are provided opportunities to continue to learn, grow, and interact with others.
The most complete answer to this question is 3-pronged:
We need to ensure our loved ones are at the center of the planning so their wishes are always core to their journey.
Next, we all need to have a positive mindset and advocate for our loved one with Down syndrome. If we expect they will be a burden when they are older or unable to contribute or communication all their lives, they are already at a significant disadvantage. On the other hand, if we believe the opportunities, now more than ever, are plentiful and the resources available, then there really are no limits. Today, many people with Down syndrome find jobs. Post-secondary education programs including major colleges are abundant. Additionally, many find their new home outside the family house and many find romantic relationships too.
Finally, expect these things, fight to keep these dream alive within your family and with their teachers, managers, and counselors. Keep advocating and, with a dose of patience, those aspirations will happen.
I could say independence is a basic human right and I believe that is true. But the WHY is deeper than that. Our loved ones deserve to find passions, to beam with pride as they learn new skills and achieve new goals. They deserve to assert themselves to the best of their ability. Studies show that people, and those with Intellectual/Development Disabilities in particular, will regress if they don't continue to learn and stretch. Striving for more independence is the best way to stave off Regression Syndrome for our loved ones.
Now more than ever, people with Down syndrome are outliving their parents or caregivers. They need to be able to take care of themselves as much as possible and together, the family needs to begin planning for the future now. Envision what independence looks like and do everything you can to foster that independence.
JOIN THE UPLIFTING GUIDEBOOK PROJECT
The UPLifting Guidebook Project seeks to provide guidance for families with Down syndrome to navigate the often challenging waters toward establishing independence for your self-advocates.
The Project will culminate with a guidebook that will include sections on mindset for caregivers and loved ones, how to foster independence from childhood to adulthood, how to create continued growth through education and work, and finally how to secure the right living community for your loved one.
The guidebook includes inspirational stories from families around the world and advice from renowned experts as well. The guidebook will be published in March, 2023.
Get the latest on the guidebook and a sneak peek through monthly blog articles when you subscribe to our free website.
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