I’m not a doctor, teacher, psychologist, lawyer, or scientist but I’m a mom of 3 boys: 6-year-old twins Alex and Max, and a very special 19-year-old boy, Nicky.
Nicky was born with tuberous sclerosis or TSC. When Nicky was just 3 months old, I saw him go through his first infantile spasms. In a short time, it escalated to full-blown seizures occurring 50 to 100 times a day. In June of 2007, Nicky was finally scheduled for brain surgery to relieve the seizures. It would require two sessions of surgery for the seizures to stop.
I waited with growing anxiety as the clock ticked. After several hours in surgery, Nicky was transported to the ICU. I hugged my little boy and held his hand. Then a nurse suddenly rushed in. I knew that something was wrong as the nurse frantically checked the monitors. Nicky had stopped breathing; his heart had stopped.
My baby boy had to endure more in his short life most of us will ever deal with. In few seconds, doctors were working on him, on his little heart. In the ICU was another child with TCS waiting for surgery. His dad saw how shaken I was and comforted me. I tried to be calm and let doctors bring my boy back while I prayed to God to bring him back to us.
It feels like eternity, but only a couple of minutes pass. And then there is a heartbeat.
I collapsed from relief and guilt. Everything brings guilt to a TSC mother.–especially not knowing why something went wrong. Nicky was rushed to have his MRI taken, to ensure that there was no damage to his freshly-operated brain. For all the problems and panic, Nicky was well. Better than I was. After 10 days, he was released, and we were on our way home. Kids are amazing, resilient, and strong individuals.
The surgery stopped the seizures and prevented further damage to Nicky’s brain. But Nicky’s life is not the same as other children’s lives, and it never will be. Nicky has never talked. He does not feed himself, cannot walk for a long distance, and is not potty trained. But just like other children, he has a beautiful smile. His hugs are full of love, and appreciation, and kisses.
As we all know, even the most beautiful child eventually grows up. Nicky is still my loving and beautiful son. But as an adult, Nicky is bigger, stronger, and much more aggressive than my little Nicky.
Why do adults with mental impairments who cannot speak become more aggressive when they grow up? Close your eyes and try to imagine that for your entire life you can never speak, sign, or communicate. You have needs and desires, happiness and pain. But you cannot communicate how you feel to anyone else. Imagine how frustrated you would be when no one around you can understand what you feel and what you want.
Now open your eyes. If you are a child like my son, this is your life, forever. You will always be this way, even when you are 50 years old. You can only communicate by being loud, screaming to be heard and understood. It took me years to know why Nicky gets angry. Simple reasons like, he’s hungry. Or he needs to go to the potty. Or he wants to be alone in a quiet place.
I have spent my entire adult career on Wall Street, and most of that time in high pressure executive positions. No one ever knew that I had a special boy. They only knew that I get to work early, do what needs to be done, and smile. You must always remember to smile, or you might break down one day and let everyone know what happens after you go home.
I can never let the world know when Nicky has a screaming fit until 3:30 a.m. Or when the neighbors hear the noise and call the police. I’ve spent many nights explaining to the police, and government workers, that this is the way Nicky communicates when something bothers him.
After the police leave, and I try to calm Nicky down and get him to fall asleep. I’ve had many nights where I just sit on the living room floor crying quietly into a pillow, so that I don’t wake up my other children. I’m not crying because I won’t get to sleep tonight, or because the police and the neighbors think I’m the worst mother that ever lived.
I’m crying because I know that the very next time that I answer the door late at night, I might not say exactly the right words at the right time. If my sleep-starved brain doesn’t work fast enough, or my temper frays, the police could take away my Nicky. But the sun will be up soon, and I need to be in the office by 6 a.m., so I put down my pillow and get ready for work.
Coffee and espresso have become my best friends. I feel like Forrest Gump: I need to run and run for miles. Forrest’s leg braces just flew off one day. Mine feel heavier and heavier as I get older.
As Nicky has grown older, outbursts happen more often and are more intense. Nicky and I are both changing. Nicky is no longer a small child; I am in my 40s and getting older. Nicky is 6’2” and weighs 185 lbs. He is taller, heavier, and much stronger than I am.
For the past 5 years I’ve lost a lot of sleep. I think about what happens to children like him when their caretakers get old. And pass away. Parents of young children rely on grandparents, friends and family members to help raise their children. That network fades away over time. And eventually, even the parents leave the picture.
I’m getting older. How much longer can I take care of Nicky? Some people live in denial. Like my family. Even thinking about the future seems like betrayal. But really: What happens to children like Nicky? What will happen to him? I need an answer that no one on Earth can give.
Does your child have siblings? Will they be willing to care for your disabled child for the rest of their lives? If not, your child will be turned over to the state and put into a facility. They will have no one to advocate for them. The parent of a child like Nicky knows all too well how easily they can be mistreated, if you’re not around to watch over them and ensure they get help when they need it. Institutionalization is rarely a happy ending. Not after the only voice that spoke for them is silenced.
Being a parent is hard enough. Being a parent with a child or adult with disabilities is another whole world of worries, anxiety, and challenges. I sometimes think, “Wouldn’t it be better if Nicky goes with the angels before I do?” No parent should be faced with choices so poor that they ever have these thoughts. But there are so few facilities that could be a good and permanent home for Nicky, even if I could afford the few that exist (and I can’t).
The thought of going to a restaurant or riding on a plane fills me with anxiety. I had my last vacation in 2010. While we waited to board the plane, Nicky had an outburst. The crew told me that Nicky would not be allowed to board. I begged the crew to let us board. I told them as soon as Nicky sits down, he will calm down and be quiet. After 15 minutes of pleading, they finally agreed. Nicky cooperated, and the plane took off.
Nicky loves flying. He was happy to look through the window and did not make any sounds for the entire flight. But it has been years since we all ate together in a restaurant. I can’t take the stares from strangers. And the comments. Someone has got to change this. Not just for me, but for the millions of other parents with children just like Nicky.
This year I made a decision. I put my Wall Street career on hold. My partners and I are working on Nicky’s Gardens of Hope. The pilot project will build our first facility, one that can truly help families with children and adults like Nicky. We will build a permanent home that gives their loved ones peace of mind that their children will be taken care of, even after they are gone.
We are finalizing the plans and budgets now to open our Gardens of Hope, but the more people that can share information with us, and help us get started, the sooner we can help that first family and all the families that follow. We will send out surveys, publish updates, give you our thoughts, and get started helping one child and family at the time.
According to the 2012 census, 20% of population has some form of disability and those numbers are increasing. The way they are cared for has to change.
Let’s make the change together.