The Personal Impact of Special Needs
I often ask my brother, Liam, whether he understands the positive impact he has on the world around him, the people he brings together, the service he inspires. Inevitably, his answer is always a skeptical, “yeah.” I try to explain further, but I know that Liam will never fully understand the incredible scope of what his being a part of this world has meant for our family and so many others. It’s a funny thing. On the one hand, Liam’s autism has been the source of so much worry, fear and anxiety for our family. On the other, it has been the glue of what drives us and what makes us who we are.
It all started with his diagnosis at the age of two. Liam will be 24 this summer, which puts him in the generation of kids for whom we started to see a sharp spike in the rates of autism. My parents were totally in the dark, and they did everything they could to educate themselves about what Liam’s diagnosis would mean for him, for our family, for the future.
They poured themselves into every therapy, diet and intervention they could find to help him. They were then, and remain today, fierce advocates for Liam. When Liam was in elementary school, he left our local school district for a state-approved special needs school called Newmark. My parents hired a special education attorney to make that transition happen, and it was the best decision they could have made. Liam’s challenging behaviors suddenly became more manageable. The educators at Newmark understood and supported Liam in a way that no teacher had before, and the impact on Liam, and consequently our family, was immeasurable. Newmark became part of our glue, and it still is today.
My mother felt so indebted to Newmark; she made it her personal mission to spearhead a fundraising campaign to help the school secure its own building. Prior to that campaign, Newmark had been renting space for its two campuses. The construction of the new building in Scotch Plains, New Jersey, brought both campuses under one roof. We raised $12 million over the course of several years, and the new campus opened its doors in September 2013. I met my husband a year prior while working on an event committee to plan a fundraiser for the Newmark campaign.
So, when I ask Liam whether he understands the scope of his impact, I remind him that he was the driving force behind our family’s dream of wanting more for him, his peers and countless more students in future generations. I remind him that my two incredible boys would not exist if not for him. I remind him that countless people volunteered their time and donated money to build a school that will last long after we are all gone. All because he exists. What I would give to have Liam comprehend that.
As Liam aged out of Newmark at the age of 21, my parents had to reassess what his future would look like and how to take the next steps. Without the protective bubble that Newmark provided for our family, the uncertainty of this transition was overwhelming. I am 11 years older than Liam, and our sister, Eva, is two years younger than him, so I have a unique perspective as an older sibling. I have been able to experience Liam’s transition not only from the perspective of a sibling but also from the perspective of a caregiver, having frank conversations with my parents about the things that keep them up at night, concerned for Liam’s future. For Eva and me, our futures were, at least broadly, boiled down to checkboxes in a predetermined timeline. Go to high school, graduate, go to college, pick a major, get a job, graduate, move out of the house. Looking back, I realize how much I took for granted these “headlines” of my future that were laid out for me.
For many years, we all hoped for some of the same headlines for Liam. As time passed, we realized that his future would invariably look different than we might have hoped, but it will still be one filled with the love, support and advocacy from his family. My parents took a leap of faith a few years ago to enroll Liam as a pilot participant in a vocational program at Rutgers University through its Center for Adult Autism Services. Like Newmark, the Rutgers program has had a huge impact on Liam and our family. It gives Liam a critical sense of independence and helps him with life skills and behavior management. On a more practical level, it gets him out of the house, which oftentimes is more than half the battle. My parents are hopeful that by the end of 2021, they will have a residential placement sorted out for Liam. I think this transition will be the most transformative for our family, even if the most difficult.
Reflecting on my own relationship with Liam, so much of who I am comes from being the sister of someone with special needs. Liam has taught me patience, empathy, resilience and compassion. He has inspired decisions in my career and philanthropy work, and I know that my identity will always be inextricably linked to him. My hope is that Liam thrives with his new independence and that we will all have more time to focus on the fun stuff, like watching Liam’s favorite episodes of Saturday Night Live and planning his dream trip to Japan. I know Eva feels similarly. When she was barely 10 years old, she was making duct tape wallets to sell at a local gift store to raise money for the Newmark campaign. Today, she spends her free time volunteering for a program at Vanderbilt University, where she is a junior. The program provides opportunities for adults with special needs to take part in the Vanderbilt student experience through on-campus classes and extracurriculars. We can’t help but connect with the broader special needs community, and I don’t see that changing for either of us anytime soon.
When I think back to Liam’s diagnosis more than 20 years ago, I am proud of my parents for facing each new challenge with vigor and open-mindedness, and for setting an example to create change, lead with love and support Liam in every way possible. There will certainly be more challenges and transitions ahead, but I know that we have the tools we need to take them on together.