Independence is for everyone: get the guidance to develop your roadmap and make it happen!
Life is Full of Surprises
Unplanned events are the spice of life. It may not seem that way in the moment, but they shake up our world, take us out of our comfort zone, and lead us to incredible learnings.
That was certainly the case for us over 28 years ago when our daughter, Gwendolyn, was born with Down syndrome. We were in shock for a while. We worried and shook. We scurried to Barnes & Noble for a stack of babies with Down syndrome books, and we started our incredible journey.
Over the years, we've become closer as a family, learned a lot about ourselves, our determination, and our adaptability. We've also learned never to underestimate our kids, including Gwendolyn and her capabilities and dreams.
About 10 years ago as we faced the post-high school "cliff" so many families talk about, we stopped in our tracks, unsure where to go. Gwendolyn lit the path.
She said she wanted her independence. She wanted what her siblings, relatives, and TV role models wanted - to continue learning, to work, to love, and to live on her own. This took us by surprise...but why not? We live in this new age of possibilities for people with intellectual disabilities. So we sat down and jotted down her dreams and what it would take to get there. What did we need to learn? What skills did she need to develop?
Gwendolyn's March to Independence
Over the past decade, Gwendolyn did her part and began to stretch her wings. She joined a fabulous learning day program at the Friends of Down Syndrome in Houston, landed a rewarding job at Firehouse Subs, built stronger relationships, and in 2021 she moved into the amazing Marbridge residential living community in Austin, Texas.
Along the way, we all met amazing people with gut-wrenching and rejuvenating stories. And we realized what we had learned during the past decade was a hard-fought gift. A gift that we felt compelled to share with others in order to ease their burden and help light their way to independence.
So many parents are unsure what independence means to them. they don't know where to get started and oftentimes if they do, they are overwhelmed. They feel they must reinvent the path that others surely went down. They had to find the resources, learn about the steps, and make the mistakes, in order to eventually reach their dream.
We took it upon ourselves to share our learnings in hopes of easing the burden of others. Thus, The UPLifting Guidebook Project and the Beyond Down Syndrome website were borne and evolved into...
The Essential Guide for Families with Down Syndrome
Plans and Actions for Independence at Every Stage of Life
What's in a Name?
The project, The UPLifting Guidebook Project, was titled because we wanted to convey the opportunities that we were discovering on Gwendolyn's journey. We also knew the independence path was indeed a project. It wasn't going to happen overnight, but with some guidance, we were determined to get there.
The name of the website, www.BeyondDownSyndrome.net, was chosen to empower self-advocates and their families and caregivers to reach beyond the diagnosis, beyond the traditional limitations for people with Down syndrome, and to discover the possibilities.
The main title of the book, The Essential Guide for Families with Down Syndrome, was selected to convey two points we have realized ourselves:
First, there are truly essential pieces of information we did not know beforehand that were critical to our success. We needed the right mindset, we needed to understand the common health risks, and we needed to secure all the public benefits available to Gwendolyn and protect those by knowing the rules and creating the necessary legal documents. And we needed to understand how she could achieve her dream of independence through inclusion and community living. These were essential.
Secondly, this was not just a journey for our loved one with Down syndrome. This was a journey for the whole family. We were all thrust into this trip and we needed to all contribute to realizing independence for Gwendolyn. During our march to independence, we met so many wonderful families. We realized our journey was one of many paths. Everyone's definition of independence is different based on their situation. So their stories had to be woven into the fabric of this book. This became largely a book by families for families. The one exception being the importance of enlisting professionals to expand our knowledge, validate our information, and provide the confidence to take important steps, especially in the fields of financial and legal planning and healthcare.
The subtitle, Plans and Actions for Independence at Every Stage of Life, sounded a bit wordy. But I just felt like it conveyed three very important points:
First, the book offers a roadmap, a plan for every family. You no longer need to feel lost or like you are falling off a cliff. Reading The Essential Guide will help things fall into place and enable you to plan for your self-advocate's future and for your own.
Secondly, the book also provides specific actions based on various stages of life. So you can use the book for years to come as a reference book. If your child is approaching 18, you can use the index and section tables to find the actions you need to take to stay on plan.
Finally, we wanted to convey the importance that independence starts young. Suddenly making independence a priority when your loved one is in their 20s, 30s, or 40s is difficult. We need to create a mindset of possibilities and determination both in ourselves and in our self-advocate from the earliest age. We also need to take specific steps quite early on to ensure maximum financial benefits are secured to support this long and exciting journey.
The Call for Action is Loud!
The lifespan for people with Down syndrome has more than doubled since the 80's and continues to grow thanks to medical treatment, inclusive programs, and growth opportunities for our loved ones with Down syndrome. As the average person with Down syndrome now lives into their 60s, many new opportunities and challenges arise. Most self-advocates are outliving their parents, aging health conditions are naturally becoming more prevalent including Alzheimer's disease which now affects nearly every person with Down syndrome by their 60th birthday and many decades earlier. The financial burdens and the challenges for people with Down syndrome to remain engaged and expanding must be planned for.
Yet the opportunities are amazing. Society is more inclusive than ever. Continuing education, employment, and housing opportunities are sprouting up everywhere trying to meet the burgeoning demand. The world is indeed their oyster, but we all need to be prepared. I believe you will find The Essential Guide to be a valuable part of your journey.
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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.
“Great resource. A comprehensive planning tool paired with thoughtful parent perspectives.” Teresa Unnerstall, Consultant and Author of A New Course
“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.
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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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FREE 5-tab Independence Plan Worksheets when you subscribe.
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.