Saturday, December 03, 2016


Yes, that time of year has arrived, I get to play Santa Clause for my people, those with developmental disabilities. I do this as a small gift to people who love easily without looking for payback, unpretentious and accepting of me. They are the forgotten, known only to their families often disowned because of a quirk in nature, abandoned because they become an imposition to their families lives, and embarrassment and an affront to their family pride.

Some families are blessed. There are no mental disabilities causing strain in communicating, no physical disabilities causing hardship, just everyday life rewarded by nothing but normalcy. Some people are blessed with opportunities to make money or achieve fame or notoriety, others suffer from the lack of the ability to stand or feed themselves, who cry out on deaf ears because the clatter of normalcy is but a din.

There are families who embrace the pain of their children’s suffering, fearing for their safety, especially when as parents they are no longer here to advocate or defend their child. They are heroes in my mind, but maybe I’m naive, maybe they should run too.

As a father of a person with a developmental disability, with physical disabilities, with a lack of speech and ability to communicate, it is like going to that child’s wake every day. You mourn the passing of your child daily. It can sometimes be a lonely world, one filled with despair and longing for a haven of relief. It never comes. Instead, as you travel through the world of normalcy, trying to keep your child within the acceptable limits of what is expected of them by society, you fall prey to anger and resentment of strangers who watch. Your child can’t maneuver a stairway, cross a street without endangering herself and you while people stare, agape with almost a morbid curiosity. You feel dirty, you feel like you have a disability, but you also feel rage at the world at large as they judge.

But when I play Santa, all that changes. Every year there is a Holiday dance. Santa appears and 400 people with disabilities, who can’t talk or can’t walk or struggle at what we take for granted, gather together as one group to dance with each other and get a picture with Santa. Getting that picture of Santa is very important to them, they line up and wait patiently sometimes, sometimes not so patiently. Their ‘normalcy’ lies within their walls, the walls that imprison then with mental and developmental disabilities. But they love each other, smiling and laughing and being who they are without the need for convention other than their own.

And what do they ask Santa for? Some ask for presents for themselves, since they have no one else in their lives. Some are boyfriend and girlfriend! Some ask for health for their dying parent. Some ask me to make their parent better. These Santa believers are in their 50’s and 60’s! Their parents are dying from old age and disabilities themselves.

Recently a man among this gentle population passed away. He was a character, verbal and filled with life. He would tell me whoppers sprinkled with salty language, appropriate for a bar room than a group home, something he learned from his past before he got the help he was getting from the agency. He was a man who was blind, crippled and slowly weakening to the point that we had him in an ICU the final days of his life. As I sat there next to his bed, I looked at him in his silence and pained look, a child in spirit suffering, knowing that he was someone’s child, someone who no longer resided on the Earth, but someone’s child, none the less! All too often I have seen this, been in this situation and felt the pain and wondered if that person’s parent was watching over him/her, and what their hearts said. It took me back to my own child, her fear when we take her to a doctor or hospital because she doesn’t understand. The look of fear looms very large in a crisis for anyone, but for someone who doesn’t understand, it looks suffocating!

So, my Christmas Holiday will be on the night of December 9th, a dance and I will play Santa. The celebrants all believe I am Santa, they love me, kiss and hug me and tell me they love me. They trust me to be Santa and I know I am deceiving them, but maybe I’m not. Maybe I am just a surrogate Santa, subbing for the real thing. All I do know is I make them happy by wearing a costume and fake beard, but they are happy and so am I.

I will spend Christmas Day December 25 quietly, a nice dinner with my beautiful wife and hopefully one of my sons and my developmentally disabled daughter. But it will be a day of gratitude that I was asked to fill the role of Santa and bring joy to souls that are in need of it.

Merry Christmas!


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