INCLUDING: Setting Mindset and the Parent's Role
The world has changed and the possibilities are endless. Now, our children with Down syndrome have countless services available, from speech and occupational therapy in their first days of life to focused life skills classes and inclusion throughout their school years. Adults with Down syndrome are getting jobs, going to college, getting married, and living on their own. The opportunities and support systems are expanding rapidly, and the aura of confidence on their beaming faces is proof society is on the right path.
These positive changes summon the need for greater planning in order to prepare for the opportunities ahead, as well as for the medical and financial burdens relegated to those who live longer. As a vital member of the Independence Team, it is incumbent upon you to navigate the obstacles and unknowns to unlock these grand opportunities for your loved ones. The days of the R-word and shipping people off to institutions, more to protect a fragile society than to provide for the disabled, are largely behind us.
As Amanda’s mom Joyce asserts in our Family Features that follow every chapter of The Essential Guide, “Everything we strive to teach our children is working toward their independence from the moment they are born.”
We are the generation that must shift mindset toward the possibilities and chase them with vigor and determination.
Not “OR” but “AND”
We can all acknowledge that the idea of independence for our children with Down syndrome is exciting but not easy. They are equipped with different skills; they are a bit naïve to societal norms and especially the evil that can lurk. They can be easy prey for those without scruples. Yet, we must find the right balance.
Ms. Smith is a senior teacher of Math and Social Skills at the Friends of Down Syndrome in Houston, which employs a multi-faceted “WAVES” (Wellness, Academics, Vocational, Education, Social Engagement) program for its 50 adults with Down syndrome. Ms. Smith implores, “I wish parents could take a class because some of them hinder their kids…because [they] shelter them and protect them so much.” Some people have a theory that we are putting our child at risk by advocating for independence; how can they be safe and independent?
The answer to that question starts with the parent or caregiver. We must believe in independence before our child with Down syndrome can even crawl. Then we need to instill the skills and experiences into our loved ones so they are prepared to be independent and advocate for themselves. Finally, we need to carefully select day programs, social circles, work opportunities, and living arrangements to ensure a proper level of safety and security is provided based on our loved one’s ability to discern risks and make prudent decisions themselves. Regardless of the level of independence your loved one ultimately achieves, there is a plethora of opportunities for the wide range of abilities within the Down syndrome community.
Thus, we are establishing their independence with handrails. We can help discover and create a safe environment that supports their growth and flourishing. And now is perhaps the best time of all to pursue this path in this modern world.
Lean Toward “Similar”
Another frame of mind to consider is our natural compulsion to compare, specifically expectations and abilities. It is natural from the very first day for us to identify the differences that our new son or daughter with Down syndrome may have – the physical differences and the slow rate of progress. At times, we may lament the differences between our child and their siblings or our friends’ kids. We may focus on how our child’s future and indeed how our own future will now be different. These thoughts are natural, but not beneficial. Consider them briefly and then put them in a box and begin to reframe your mindset.
Honestly, your path will not be the same as others. Some may dispute that statement and I’m certainly encouraging you to strive for your dreams and those of your self-advocate, but I also want us to be grounded in a reality that supports those dreams, not disillusions. You will have new challenges – health challenges, school disagreements, longer lead times to accomplish tasks, and most certainly extra financial burdens as well.
Rather than focus on “different” or even the idealistic “same,” lean into “similar.” Their high school experience may not be the same as their peers, but it doesn’t have to be so different. Nor does a college experience or vocational opportunity. While their independence will not be the same as others, it can be equally rewarding. Your child with Down syndrome can achieve many wonderful things in their life. It starts with a positive mindset, in believing, in striving to make those possibilities realities. And as you achieve these goals, your child with Down syndrome will become their own self-advocate, and you will become a more confident parent and sponsor.
“It’s Never Too Early…”
At first glance, independence might appear to be targeted to families of adults with Down syndrome. That was my expectation before I began this project, largely because that was our family experience. We were not well prepared for life after high school. Surprisingly, our daughter, Gwendolyn, knew exactly what she wanted…independence! And she’d been telling us all along – first by no longer needing us to stay with her at social events and later by cutting out pictures of furniture she wanted for her future home. We just had to listen.
But it was admittedly a shock to the system. My wife, Jennifer, and I consider ourselves rather progressive parents – open-minded, supportive, encouraging of our kids to try new things, make mistakes, and learn without the protective parental umbrella. But this didn’t always extend to Gwendolyn and certainly didn’t extend to our thinking of her working and moving out of the house one day. To suddenly consider these leaps at 18 was a difficult paradigm shift.
We soon realized it would have been easier to foster that independence from the outset; to have employment and independent living as goals before Gwendolyn was even a toddler and to use those goals to develop specific skills to support those aspirations. Preparing Gwendolyn with more independent tasks and choices both at home and at school through future-focused Individual Education Plans (IEPs) could have made Gwendolyn’s transition toward greater independence in her teens and 20s more seamless. Additionally, the rest of our family would have been better prepared to envision a future of successful independence.
Have independent expectations from the start. Consider every aspect of your loved one’s years ahead through a lens of independence and ensure his or her growth and development supports that approach.
“…It’s Never Too Late”
Instead, we as parents had to catch up. We had to assess Gwendolyn’s skills gaps and our knowledge gaps as well, and then focus on closing those spaces so we would all be prepared for her burgeoning independence path. And I know we are not alone.
Families with Down syndrome are in a wide variety of places. Some have been preparing for independence for years and others have turned a blind eye to the prospect. Perhaps when your child was born the opportunities for kids and adults with disabilities were more restrictive. Perhaps your location offers fewer Occupational/Physical/Speech therapy services, not to mention positive community support, so a vision of limited opportunities naturally evolved.
But even if your “child” is 25, 35, or 45, it is not too late to consider a path of independence. The prospects in the modern world are tremendous. Our loved ones are seeking these opportunities even more. And with the lifespan for people with Down syndrome double what it was in the 1980s[i] many of our loved ones will now outlive their parents. Independence is more essential now than ever.
Perhaps the sense of urgency is greater, and the transition more difficult as an adult, but the reward for our self-advocates will still be worth it. Foster that independence at home, shift your mindset, and share the possibilities with your self-advocate. Choosing a new path can be scary but will support your loved one’s progress and your own future planning as well.
In our Family Survey, the two most significant barriers to independence were a lack of available guidance and parental mindset. Too many of us can’t envision life with an independent, largely self-sufficient self-advocate who does not live at home. When your mindset shifts and you are equipped with the step-by-step plan in this guidebook, the possibilities become endless.
Parental Roles
Ours is not a role dominated by coddling and protection. That may be a primary focus during the initial days or weeks, but it gradually declines, replaced by more empowering roles such as teacher, supporter, and dream champion.
Teacher
Our children are equipped only with instinctual motions and underlying DNA in those early years. We are their teachers. We choose what to show them, what to tell them, what love is and what danger may be. We also decide what not to show or tell them. We are their filter on their world. From this, they learn what we choose with little of their own take on life in these early years. Most psychologists and educators agree that these pre-adolescent years are the most formative for any child.[ii] We have the opportunity to not only teach them right from wrong, but also about choices and possibilities as opposed to merely following rules and societal norms that can restrict options or ambitions. As the most important advisor on their Independence Team, we are the lead teachers of skills, abilities, and mindset.
Supporter
Our supporting role is important because we provide the safety net in case of danger or mistakes. The word “supporter” also implies we are not the “doer.” Generally, the more we teach and support but let them do the task, the more they learn and the greater confidence they will have in their own abilities. These are the seeds of strength and independence that all our kids need.
No one, even the most experienced doctors and teachers, knows your loved one like you do. Hence, we are called upon to roll up our sleeves and advocate for our loved ones to ensure they have the best environment to learn and grow – on the playground, in school, in the doctor’s office, and when searching for jobs or living arrangements.
As the key advisor on the Independence Team, it is our charge to ensure ideas are developed, evaluated, improved, and implemented. Challenge within the Independence Team will help strengthen the plan, but naysayers do not belong on the Team or in your self-advocate’s circle of trust.
Dream Champion
Dreaming. What a lovely word. Dreaming has gotten lost in our fast-paced, results-oriented world. Yet we all benefit from dreaming. Contemplating our futures. Recognizing our strengths and passions. Driving ourselves to achieve what will make us most happy.
Today, not only do we require time to dream, we need to also have the positive mindset to park the stereotypes, harsh realities, or naysayers to the side. Those who say our children can’t learn, love, and live independently either need to be convinced otherwise, or removed from the circle of trust. We need those who, at their core, believe in the prospects. Optimistic approaches will unlock all the possibilities in the minds of our self-advocates, but also ourselves, our families, and other supportive members of your Independence Team. We are our child's cheerleaders, encouraging them to believe in themselves, to explore, and to follow their interests. Fostering this mindset early on will breed confidence and determination. Otherwise, it is very hard to create this approach during adulthood when it may require a 180-degree turn from a more limited attitude and outlook. That’s the recipe for undiscovered dreams and unfulfilled opportunities.
Moving Forward
Today there are countless opportunities for kids and adults with Down syndrome. We may have to do a lot of research and push against norms and boundaries, but the future of our self-advocates is in their hands…and in your hands. Your mindset will determine how much of the opportunities and dreams are embraced and eventually realized. As parents, your role is to be the catalyst rather than the restraint. Your reward is immeasurable in the strength, pride, and independence of your self-advocates.
Certainly, the path is not always easy or well-defined. Those self-advocates and families with ambition, determination, and resourcefulness are rewarded with opportunities and success. Those that get stuck in the paradigms of the past or the quagmire of options now available, miss out on many of the new possibilities. The Essential Guide for Families with Down Syndrome will help you understand the options and pave the path forward. However, the ambition and determination must come from you and your self-advocate.
Independence doesn't have to be overwhelming! This article is adapted from our award-winning book, The Essential Guide for Families with Down Syndrome, which offers sections on Fostering Independence, Health & Financial, Education, Work, Inclusion, and Housing. It's important to use available resources reduce the complexity, end the wandering and frustration, and find the best options for your loved one.
[i] Ariana Eunjung Cha, Babies with Down Syndrome Are Taking Center Stage in the US Abortion Fight, Washington Post, Washington, DC, March 05 2018, https://www.washingtonpost.com/news/to-your-health/wp/2018/03/05/down-syndrome-babies-are-taking-center-stage-in-the-u-s-abortion-fight/
[ii] Pamela Li, MS, MBA, Formative Years - Why Are They Important in Child Development, Parenting for Brain, June 28 2022, https://www.parentingforbrain.com/formative-years/
Want to Learn More?
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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 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.
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