Guiding Principles for Parents of People with Down Syndrome
A while back, Beyond Down Syndrome surveyed parents about their hopes and dreams for their loved ones with Down syndrome and the perceived obstacles to achieving those ambitions.
Our Self-Advocates WANT Independence
The goals ranged from self-care, relationships, work, continuing education, and living on their own. We've continued to hear these same aspirations through our cross-country independence workshop tours.
However, what really surprised me was the obstacles those same parents mentioned. Some noted their loved one's skills or financial impediments, but far and away, the most common obstacle was the parents themselves...and these same parents completed the survey!
After pondering for a while, this probably shouldn't be such a surprise. We parents are naturally protective of all our kids and especially so for those more vulnerable people in our community. We are concerned about their safety and the intentions of others. I also uncovered this feeling of shame amongst many parents who feel it is their obligation to protect their loved one with Down syndrome, including providing them with a lifelong home. So when parents begin to ponder their self-advocate entering society-at-large including possibly moving out of the house, this shakes up our world and we feel in some way that we are not fulfilling our duty.
It took Jennifer and I a long time to drop this overbearing weight, and we did it through accepting these guiding principles...these three pillars of independence.
Definition of Independence
At the 2023 National Down Syndrome Society convention in Cincinnati, a mother approached our booth and shared, "I don't think my son (age 12) will be independent!"
I asked her why she felt that way. She shared that she believed her son was struggling with self-care, initiative, and, well, independence. She could look around at adults with Down syndrome and just couldn't envision her son could go to school or work on his own, etc.
But the reality is that independence is different for everyone, whether they have Down syndrome or not.
Some will work 30 hours a week, others 5-10 hours.
Some will go to inclusive college programs away from home and others will finish high school and seek local day programs or "home-schooling" style education.
Some will get married and others may struggle with relationships.
Some may live in their own apartment, others in a residential community, and others at their family home.
And finally, some may be motivational speakers while others struggle to communicate verbally.
But these situations represent the broad breadth of our community. Yet independence is not one specific journey. We celebrated our daughter Gwendolyn ordering her meals on her own, taking care of her own hygiene, proudly working 5 hours per week, and recently moving into a residential living community. I always suggest we plan for independence, but we also need to be flexible based on our loved one's capabilities and interests, overlayed with acquired benefits and the family's financial situation as well.
Every Stage of Life
Further to the definition of independence above, it's good to recognize that independence is a lifelong journey, applied to every stage of life. Oftentimes, when we advertise an independence workshop, many people expect this focuses only on the 18-22 "transition" years. And while there are many key changes and considerations at that stage, it's only part of the equation.
We've been fortunate to have families of 3-week olds and 50-year olds join our workshops. It's especially heartwarming to see younger families who may be seeking guidance and role models for their family journey. The earlier the family shifts from lamenting perceived limitations to pursuing the vast opportunities the world now offers our kids, the better. The earlier we can introduce choice, problem-solving, and initiative with our kids, the better.
The reality is, no one can flip the switch at 18 or 22 and say, "Now, you are independent!" It's a long journey, often with very small, incremental, sometimes imperceivable progress. My hope is someday the mother at the NDSS conference will realize how far her son has come and look forward with renewed vigor.
It is truly never too early to begin an independence journey, both for our loved one and for the family as a whole.
Person-Centered Planning
This phrase has been around in the Intellectual/Developmental Disability community for years. Some of us also call it self-advocacy or self-determination. It's the principle that our loved one should be the focus of their own independence plan and that they should be involved in the development and execution of that plan.
That sounds pretty logical. We all should be involved and direct our own lives. However, as parents of people with Down syndrome, we often violate that principle.
In fact, this hit home in one of our most poignant moments. About ten years ago, Gwendolyn came home from school and declared, "I want to be independent!" That's a pretty bold statement for any 19-year-old. So we listened. We gathered around the kitchen counter and she led a discussion about what independence meant to her. What her dreams were and why. As a result, we compiled a bit sheet of dreams and steps that guided us for years to come.
But the greatest learning of that day was that Jennifer and I stepped back and listened. We realized perhaps we had not done that before. Since then, we have strived to ensure Gwendolyn is the center of her plan. Her dreams and aspiration drive the day. Our role is really not to chart the path but to support her path.
We have reflected often in this mindset shift:
Rather than compare Gwendolyn's progress to others, we gauge based on her happiness and pride.
Rather than let our own fears about her moving out of the house stall the discussions, we recognize those are our concerns and not hers. So we strive not to let our protective tendencies to deny her dreams, but to strengthen her dreams. She can achieve her aspirations and do so safely and securely with our help, but we should not be denying her aspirations.
This pillar has helped us check our fears and preconceived notions at the door and enable and encourage Gwendolyn to be her own self-advocate.
By recognizing and implementing these three pillars, Gwendolyn has shown great initiative and has enjoyed well-deserved pride for her many accomplishments. And we, her parents, get to celebrate with her along the way.
I encourage all of us to consider these pillars and what our self-advocate's life may look like when we allow these principles to guide our actions and those of our loved ones.
Want to Learn More?
Check out our diverse blogs split out by age ranges
Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.
Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.
Got more questions? Join our FREE live virtual webinar on April 17th. Find out more and register here!
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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