Supporting My Sister With Down Syndrome as She Transitions to Independent Living
I am a proud sister. I am a tired caregiver. I am a passionate advocate. I am a best friend.
These are just four of the many roles I found myself playing this year as my triplet sister Sarah, who has Down syndrome, came to live with me as part of her transition to independent living. Sarah and I are only 23 years old, and when the opportunity arose for her to move from Florida to Ohio for a year to become more independent, I felt as if there was no better timing. I had just completed my undergrad and was new to Columbus, and Sarah had just aged out of the public-school system with little direction as to what would be her next step. She packed her bags and moved up to Ohio without mom, dad, or her traditional support system in Florida. We embarked upon our separate yet conjoined journeys together, just as we had growing up. We learned so much about ourselves and the community, and hope that some of these teachings may guide other sibling duos as transition is a reality we all must face.
Reflection #1: Sibling Guilt Is Real
In December, I was interviewed by Jessica Leving of the Center for Siblings of People With Disabilities for her podcast. Jessica, a sibling herself brought up the term “sibling guilt” with regards to siblings of those with disabilities, as I was discussing how my philosophy has always been to provide Sarah with the same and equal opportunities as I have been given. I had always felt positive about this type of thinking, attributing it to the many opportunities Sarah has been given including sleepaway camp, high school graduation, more recently living away from our parents and many more. But it was not until speaking with Jessica that I realized this philosophy could manifest itself as “sibling guilt” in disguise.
Living with Sarah this past year, I have been able to identify this sibling guilt in various forms and through this recognition, I am becoming more vocal about these feelings, allowing me to justify their effects on my daily life. For example, as I am attempting to establish my post-undergrad social life, I have felt immense guilt when I go out to meet new friends and do not bring Sarah along. Similarly, leaving Sarah home alone while I go to work has left me feeling guilty if she does not have a purposeful day planned. If Sarah and I fight like sisters (which we often do!) I have a feeling of guilt that is heavier than the feeling that comes with the same interactions with my brothers.
On a larger scale, one could argue that Sarah living with me is a form of sibling guilt. An opportunity presented itself, and Sarah may have never had this gateway to independent living if I did not feel the need to make room in my life for her to live with me. Little did I realize this feeling has played a huge role in my life since as long as I can remember, although I have not allowed myself to acknowledge the feelings of guilt. I believe if I had this awareness at an earlier age, I might have had more patience with myself and perhaps allowed myself more growth as an individual, which would in turn influence the way in which I support Sarah.
As Jessica helped me come to this understanding at the age of 23, I encourage all families to discuss this idea with siblings of people with disabilities, as the awareness can prevent us all from burying feelings that might hinder the support and love we can give to both ourselves and our siblings later on in life when we may be needed most.
Reflection #2: I Need Sarah
From an early age, I have acknowledged the two-way street nature of having a sibling with an intellectual disability. We do so much for our siblings by giving them the socialization and high expectations society is known for hindering, and our siblings do so much for us by teaching us the importance of unconditional love, slowing down, and much more. However, the experience of living with Sarah in my 20s has brought a whole new meaning to “needing one another.”
Post undergrad can be one of the most challenging times as we must learn how to live on our own without the structure of university or a social life at our fingertips. I needed Sarah always, but particularly during this time that can be characterized by loneliness and isolation. Not only was Sarah my constant companion to curb the loneliness, but the lessons she taught me when we were younger have been necessary during this time as I work towards becoming my own independent self. Some may think this year has been a blessing for Sarah but as is common throughout my life, what is a blessing for Sarah is also a blessing for me.
Reflection #3: Sarah Is Beyond Capable
My family has always felt a deep sense of pride for how Sarah was raised — just like her siblings. But it was not until this experience that my parents and I acknowledged that Sarah could have done more, earlier. To be honest, this statement is embarrassing but it’s the raw truth — Sarah is capable of way more than we could have ever imagined.
When Sarah moved in with me, I made it a point to let her make her own mistakes and be the manager of her own life, selfishly for the reason that I was and am still trying to navigate my own independent living. Sarah does her own grocery shopping, meal planning, laundry, cleaning, and scheduling of her time. But until she came to live with me, these activities were not on my family’s radar nor did we think Sarah would need to one day do all of this on her own. But once she came to live with me, we raised our expectations and Sarah answered the call. Just like with anything, time and mistakes will lead to future success and we are seeing that with Sarah’s independent living activities. One year is certainly not sufficient to master anything, but we have guided Sarah onto the right path, and she is making progress towards independent living.
Reflection #4: Effects of COVID-19 Represent Our Biggest Fears
The effects of COVID-19 has left my family living our worst fear for Sarah — isolation. We as a family have worked tremendously hard to encourage Sarah to dream big and in turn, we have promised to do whatever we could to help her make her career, social, and life goals reality. For a self-proclaimed social butterfly like Sarah, her dreams revolve around working with kids and socializing with friends and family in her free time. But with COVID-19 keeping us all distant, these dreams are harder if not impossible for Sarah to pursue.
As a sister, I feel as if COVID-19 has forced me to experience my biggest fear for Sarah, in which she lives a life without a meaningful job or regular in-person social interaction. This is a common fear (and unfortunate reality) in the Down syndrome community and as an advocate, these past few months have been a wakeup call for me. I will work harder than ever to ensure this reality that we are living does not become Sarah’s (or others’) norm when this is all over. I have tasted this grim reality and I do not ever wish for my loved one or an individual with Down syndrome to have the same experience.
Reflection #5: Early Intervention Is (Always) Key
Typically, when we think of early intervention, we think of the cocktail of therapies we want to get our loved one involved in at a young age. But this year I saw firsthand the importance of early intervention for life skills. When I went off to college, I learned how to do my laundry, cook (sort of), feed myself, and manage a budget and my time by trial and error and rather quickly, as is common among most college students. But, just as in education, our loved ones with Down syndrome can still master each of these activities, but the path to get there may be longer and different. However, I can speak for my family in that we focused on Sarah’s education and didn’t really think about independent living and career skills. We must embark upon this journey with our loved ones earlier, knowing that’s it’s going to take longer, but the end result can be the same if we are equipped with the same persistence that advocates bring into IEP meetings.
This year has been quite the journey for both Sarah and I. Living with your sister is not easy to begin with — we fight over silly things, but our parents are not there to make things right or tell us to grow up. I found it extremely challenging to not only navigate young adulthood, but also ensure I was providing the right level of support for Sarah to succeed. The balance between being Sarah’s support, letting her make mistakes, and living my own life required a lot of my energy. However, I hope others within the Down syndrome and disability community can take these lessons onto their journeys with their loved ones.