Maddie shares her personal story of love & duty in our first Family Feature
"This is Maddie, my big-little sister!” Gwendolyn exclaims with a blooming smile. “Big-Little sister,” a title I wear with pride. I am her big-little sister because I tower over her at 5’2” to her 4’8”, but I am also 13 months younger than her. She is very protective over me, and in different ways, I am protective of her.
Maddie's story is included in The Essential Guide for Families with Down Syndrome, along with over a dozen stories from other families who share their struggles and triumphs. Each story complements the chapter's theme, whether on fostering independence, understanding health challenges or financial benefits, work or school inclusion, or housing options. Maddie's love, care, and concerns are beautifully shared in our first Family Feature.
From as early as I can remember, I had a built-in buddy – someone to share the swing with when we were toddlers, someone to potty train with as an itty bitty. Growing up, we pretended to be twins more often than not. As kids, we were gifted matching clothing and dolls, and our names even rhyme, Madolyn and Gwendolyn. As far as Gwen and I were concerned, we were twins – twins that were 13 months apart. Our parents tell us how we met most of our early childhood milestones together – I walked and so did she, I played and so did she. I went to school, and she did too. I always recognized there was something “different” about her classroom, though I couldn’t pinpoint it until I was around 8.
I have always been protective of my little-big sister. Helping her play with toys and holding her hand as we walked – a task she wasn’t so fond of. Growing up, Gwen never liked to walk further than a few hundred feet. She would choose her spot and stop in her tracks, stomping her feet and pouting to tell us she was done. Nothing, aside from candy, would incentivize her to continue walking. We went through our family ritual of helping encourage her to walk, telling her what privileges she would lose out on if she continued in her stubborn fog. But I had a trick up my sleeve, a trick that worked when we were 6 and 7, and a trick that works to this day. I would walk up to my sister, hold her hand and say, “Good sister? Remember we are twins? And twins stay together.” I would give her hand a squeeze, a soft smile, and soon her little feet would start to shuffle down the sidewalk, her footsteps falling into rhythm with mine. I’ve used that trick more times than I can count. It’s our (almost) twin telepathy. It’s little moments like those that I still remember, where Gwen has helped shape me into the adult I am today.
From an early age, I knew I needed to advocate for my sister, to other children, to adults, and to her teachers. It helped that I wasn’t a particularly shy kid. I remember clearly one year we were trying out a new religious school program on Sunday mornings. At the time, the new synagogue didn’t have a class dedicated to children with disabilities. Eight-year-old me was ecstatic to find out that Gwen and I were assigned the same classroom – an excitement that was followed quickly by the realization of the responsibility to protect my sister from our new classmates and a new teacher who didn’t quite understand how to reach my sister. She handed out the first assignment, one that was on par with my learning needs but was completely inaccessible to my sister. Gwen sat and fiddled with her colored pens as I completed the assignment, checking in on her periodically to see her progress. It occurred to me, she hadn’t written anything. She was only interested in counting the pens and grouping them by color. I instinctively flipped the paper over and wrote out the names of the colors she had collected, creating an exercise in color matching where she could match the ink color to the color name I wrote on the paper.
I was so determined to give Gwen an activity that made her feel included that I failed to realize the gaze of our teacher, standing over our table. She quickly grabbed the pens, took our papers, and explained her disappointment that we weren’t focused on the task she provided. I got in trouble that day, and I don’t recall having Gwen as a classmate again after that. At that age, I didn’t understand that teachers could be wrong, and that school systems could be faulty. All I knew was that my sister wasn’t being included and that the room wasn’t willing to adapt.
Growing up, we were lucky to be exposed to services and programs that did strive to include everyone, regardless of ability and adaptation needs. We attended summer camps designed for kids with disabilities and their siblings, an oasis where I didn’t feel like I had to translate or hover for Gwen to feel included and welcome. I frequently sat with my sister’s life skills class in the lunchroom in middle school, an opportunity for me to meet my sister’s friends and see her interact with her small social circle. In high school, I often brought my sister to my after-school choir rehearsals. My friends were always enthusiastic and excited to meet Gwen, but very hesitant to actually interact and talk to her and not about her – the hesitation, I realized, sparked from apprehension and carefulness, usually not malice.
My hyper-awareness of inclusion as a kid has definitely fostered my mindfulness as an adult. In my work as a Theatrical Stage Manager, I’ve been told my patience and understanding with people are far stronger than typical, probably stemming from the early days of getting my sister to walk with our family throughout our travels in Europe. I’ve been told my read on a room is pretty accurate, probably stemming from the needs my sisters and her friends required in a sea of staring eyes. I began to understand what people were actually trying to communicate but were too scared or anxious to say out loud. I try to see the good in everyone and take the time to find the good in those who have been “othered,” and I never underestimate the power of a soft smile and a little hand squeeze.
Guardian or Caregiver
Future things are weird to talk about. I always knew there would be a time when my parents won’t be around to oversee Gwen’s care. But who wants to think about their parents dying? The subject is taboo, and so is the subject of caregiving for an aging sibling.
I have lots of hopes for Gwendolyn. I hope she finds friends, maybe love, a sense of belonging and purpose. I’ve had long chats with my dad about what my sister’s future could look like. She is currently in her second year at a residential community that caters especially to semi-independent adults with disabilities. Gwen has always craved independence – her own apartment, her own schedule.
Looking toward the future, I am both excited and scared for what is to come. I have always known that one day, Gwen could be my responsibility, a fact that is daunting but is softened by the work that my parents have done to create a community for my sister and a sense of stability that will guide her through the transitions that adulthood brings. As I begin to navigate my path in the adult world, I can’t help but plan for where my sister would fit in.
My fiancée and I dream about having a guesthouse for Gwen to live in part-time. Life takes weird, unexpected turns, and while Gwen is set up for success at her residential program, who knows what twists and turns could lead her to take residence with us?
While I can sit and daydream about welcoming Gwen into our home, I know I would have a steep learning curve to navigate doctors’ appointments, therapists, and psychiatrists while balancing her busy schedule of work and enrichment, her social life, daily hygiene, and healthy eating habits.
The list goes on and on. Lurking in the back of my mind is the fact that Gwen may likely develop dementia which only adds to the spaghetti soup of things to keep in line for her to have a good quality of life. I am fortunate that my parents are so proactive in Gwen’s journey. I only hope that in time, I will be able to provide a support system for my sister, whether from afar or within our shared home. Thanks, Dad, for writing this book, I know it will be an invaluable resource for me when the torch is passed.
Maddie, Gwendolyn’s sister (as the dad, I'm so proud of them both...and I didn't even coach her to include the last line 🤩)
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.
“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!
Get the latest on The Essential Guide, speaking engagements, and our weekly blog articles and resources when you subscribe to our free website.
Sometimes this blog may get hidden amongst your Facebook posts or buried inside a Facebook Group. Don't miss any blogs filled with steps to help us all advocate for our adults with Down syndrome. Subscribe today!*
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.