No More Secrets

Man is not what he thinks he is, he is what he hides.

Andre Malraut

I guess you could say, it is the dirty little secrets we hide behind closed doors that make us all human. We believe that if we hide our perceived imperfections and create a more perfect version of ourselves, we will be accepted by others. We can protect our fragile hearts from the excruciating pain of judgment, humiliation and societal scorn.

But when you are the parent of a child diagnosed with special needs you have no more secrets.

You cannot hide your child's differences.

Walkers, wheelchairs, and behavioral outbursts serve as disability trip wires alerting the world to our unwelcomed presence. We are exposed and vulnerable, helpless victims held hostage by the unwanted stares, comments and criticism of an ignorant public.

When you are here to teach the world, you lose the power to be inconspicuous.

You no longer blend.

You become the spotlight.

How you choose to use that spotlight is entirely up to you.

Most days you diffuse the comments and stares with hardened tolerance and polite unresponsiveness.

Then there are those other days, when you meet it with anger,

sadness,

humiliation,

even retaliation.

But whatever emotion you chose...

You lose the ability to protect your heart.

I was reminded of this last week, at Nick's 6th grade graduation ceremony.

Pete and I arrive early to the school and enter the empty auditorium. We survey the rows of empty seats and chose two chairs next to the aisle way.  As parents of a child diagnosed with Prader Willi Syndrome, we know a behavioral meltdown during this kind of event is highly probable. We need easy access to an open exit.

Large public events are difficult for Nicholas. His sensory sensitive body is quickly overwhelmed by loud noises and bright lights. He is unable to connect with someone speaking from across the room. He loses focus and the ability to sit still. But perhaps his greatest challenge is the heightened anxiety issues that accompany his repetitive thoughts about his inability to access food.

Pete and I are nervous, we know we are pushing it. But denial is a powerful drug for desperate parents.

Children and teachers begin to file slowly into the room.

Two of Nick's teachers spot us in the crowd. Sensing our nervousness they part from the group and approach us to calmly explain the plan for handing Nick his diploma. Their small act of kindness soothes our fear momentarily and we are comforted. But their noble effort to shield us from pain is quickly shattered as Nicholas enters the room.

"I WANT TO SIT WITH MOM AND DAD!" he screams and every head in the room turns to look at Nicholas.

His sped teacher, Mrs. T is holding his hand and although he is wearing his headphones to deaden the sound of a noisy room, he is already overwhelmed.

In an effort to soothe Nicholas, she walks him over to where we are sitting and asks him if he would like to sit with us. It is a brilliant idea since sometimes simple changes to the routine is all that is needed to prevent such a dramatic response.

It works. Nicholas is quieted and takes a seat next to me.

The room is filled to capacity as the ceremony begins. Several speakers take the stage and begin to call the names of students who have earned special award. I laugh to myself, knowing my child will not be one of them.

The list of names seems endless. Nicholas is hot and sweating and it isn't long before the loud applause and droning sound of nervous speakers begin to erode his patience.

"I CAN'T TAKE THIS ANYMORE!" he screeches.

The woman at the podium stops speaking. All eyes turn to us. My checks start to burn. It is as if our bodies are being targeted by a deadly, red laser beam emanating from the focused and scornful eyes of a room full of angry parents.

It is quiet as everyone waits to see what we will do.

Pete and I lead the crying Nicholas slowly toward the exit.

I feel a hot wave of resentment coming from the parents around me, angry that we have ruined their need of a perfect ceremony.  I focus my eyes on the floor knowing that I do not have the strength to control the rage I feel inside toward their overwhelming ignorance.

"NOOOOOOOOOOO. DON"T DO THIS TO ME." Nick screams.

Inside, my heart is saddened as I realize I have asked too much of my son. Selfishly, I have placed him in an environment he is not ready to handle. My need for normalcy and perfection has superseded his ability to endure such a show.

I pay for my selfishness.

Mrs. T leads us out of the auditorium, down the hallway and into the quiet confines of the motor room. Hanging from the ceiling is a large swing used to create proprioceptive input for the students who need it. It is the perfect instrument for calming Nick's outburst.

Pete places Nicholas on the swing and I begin to sing to him quietly.

"Row, row, row your boat, gently down the stream........."

Mrs. T heads up to the classroom and brings down his friend Alex who always manages to make Nick smile. Within a few minutes, Nicholas is quiet and comforted.

We head up to his classroom. Mrs. T sends a text to Nick's teacher Mr. P and asks if he could come to the classroom after the ceremony to present Nick his certificate.

It isn't long before the kind Mr. P arrives with a group of Nick's "typical" friends. They encircle his chair to officially present him with his diploma and a copy of his yearbook.

Nicholas smiles brightly. He feels happy connecting with this small group of special people. It is a quiet and intimate ceremony. Nicholas is surrounded by all of the people he loves most in the world creating a beautiful moment that is profoundly more meaningful to all of us.

As we drive home from this eventful day, my husband and I reflect on the chaotic experience and begin to laugh.

"You know Lis," Pete says. "There was a moment during the ceremony when Nick was screaming bloody murder and all the parents were shooting us dirty looks. But there was one guy standing near the back by the door. He looked me in the eye as I passed by and smiled at me kindly. That simple gesture comforted me and let me know that there was at least one person in the room who felt compassion for us and appreciated our difficult life."

I do not know the identity of the kind man in the back.

I probably never will.


Photo by Disney

But I will tell you this.... he helped me to realize that as parents of a child diagnosed with Prader Willi Syndrome, our "secrets" may be exposed to the world. But what is less obvious, and perhaps more important is Nick's unique ability to remove the masks of those who choose to judge him. He is like a mirror, reflecting the energy of the individuals who stare at him. He strips these people of their personal secrets and shows me exactly where they reside on their own spiritual journey.

Most observers who gawk or comment are scared, fearful, frozen or obnoxiously curious, displaying the character and actions of a childlike spirit.

But sometimes....just sometimes we are fortunate enough to find the hidden few who are truly enlightened. Angel-like souls who travel among us here on earth. Faithful, strong spirits unafraid to show compassion or stand beside us on our journey to learn new ways of assisting our special child.

Once again, it is my beautiful son who teaches me that it is we who are disabled, crippled by our need to keep our secrets. We repress our burning desire to embrace our imperfection and celebrate the true essence of what makes us worthy and unique.

 and in the process become less human and able to love.

It is our secrets that prevent us from living.

I am tired of being afraid to live.

I am ready to embrace Nick's humanness and desire for no more secrets.

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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com.
For more information about Prader Willi Syndrome visit www.pwsausa.org