I’m not a doctor, teacher, psychologist, lawyer, or scientist, but I am a mom of three boys: 6-year-old twins Leo and Ben, and my incredible 19-year-old son, Max. Max was diagnosed with tuberous sclerosis complex (TSC) shortly after birth. At just three months old, I witnessed him endure his first infantile spasms, which soon escalated into daily seizures that peaked at 100 episodes. In June 2007, Max underwent brain surgery to alleviate the seizures, requiring two separate procedures.
As I anxiously awaited news, the clock felt like it was ticking in slow motion. After several hours, Max was in the ICU, and I held his tiny hand, overwhelmed by fear. Suddenly, a nurse rushed in, and my heart sank as I realized something was terribly wrong—Max had stopped breathing.
In those terrifying moments, I watched as doctors fought to resuscitate him. Another family in the ICU, also dealing with TSC, offered support while I prayed fervently for my son’s recovery. Thankfully, after what felt like an eternity, we heard a heartbeat again. Relief washed over me, mixed with the nagging guilt that often accompanies parenting a child with special needs.
Max was ultimately well after the surgeries, and while they stopped the seizures, his life path would always differ from that of his peers. He has never spoken, is unable to feed himself, struggles with mobility, and remains unpotty trained. Yet, he possesses a radiant smile, and his hugs are filled with love and gratitude.
The Challenges of Growing Up
As Max transitioned into adulthood, I noticed he grew bigger and stronger, and with that strength came more frequent and intense outbursts. It’s heartbreaking to think about how he, like many individuals with communication challenges, experiences frustration. Imagine living in a world where expressing needs, desires, or feelings is impossible. The only way to communicate becomes through loud sounds and screaming, something that took me years to understand.
Balancing my career on Wall Street with parenting Max has been challenging. My colleagues had no idea about my unique circumstances; they only saw me as the professional who arrived early, worked diligently, and wore a smile. That smile often masked the tumult of emotions I faced at home, especially during sleepless nights when Max would have severe outbursts.
Countless times, I found myself explaining to police officers or social workers that this behavior was simply Max’s way of communicating distress. After they would leave, I often sat in the dark, quietly crying into a pillow to avoid waking my younger children. My tears were born not from exhaustion, but from the fear that one day, I might not handle a situation correctly, potentially leading to Max being taken away from me.
Facing the Future
As I age, the reality of Max’s future weighs heavily on my mind. What happens when I can no longer care for him? Most families have a support system of grandparents and friends to help raise their children, but that network dwindles over time. Parents of children with disabilities often grapple with the daunting question of who will care for their child once they are gone.
It’s a harsh reality to face: without a sibling or family member willing to step in, Max could be placed in a facility where he may not receive the care or advocacy he deserves. The thought of institutionalization is terrifying, as many children like Max can be mistreated when their parents are no longer there to protect them.
Parenting is challenging enough; parenting a child with disabilities brings an entirely new set of worries and anxieties. Sometimes, I even think to myself, “Wouldn’t it be easier if Max went to be with the angels before me?” No parent should ever have to face such thoughts. However, the options for good, permanent homes for children like Max are few and far between—and often financially out of reach.
Everyday Challenges
Even simple outings, like dining at a restaurant or flying on a plane, fill me with anxiety. I recall our last family vacation in 2010 when Max had an outburst while boarding a flight. The crew initially refused to let us on, and through tears, I begged them to give us a chance. Thankfully, once seated, he calmed down and enjoyed the flight. However, it has been years since we’ve dined out as a family, unable to bear the stares and comments from strangers.
A New Beginning
This year, I decided to put my Wall Street career on pause. Alongside my partners, I am developing “Max’s Gardens of Hope”, a project aimed at creating a facility that can genuinely support families with children and adults like Max. We are finalizing plans to build a permanent home that offers peace of mind to families, ensuring their loved ones will be cared for even after their parents are gone.
As we launch our initiative, we welcome anyone to share information, contribute ideas, or help us get started. With 20% of the population living with some form of disability, according to the 2012 census, it’s time for a change in how we care for these individuals. Together, we can work toward a better future for families like ours.
Conclusion
In summary, the journey of raising a child with special needs can be filled with immense challenges and fears, especially as they transition into adulthood. As parents, we often worry about what the future holds for our children when we can no longer care for them ourselves. The need for supportive facilities and a community that understands and advocates for these individuals is more pressing than ever.
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