Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Saturday, May 28, 2011

Twenty Questions

Happiness is the longing for repetition. - Milan Kundera

Children diagnosed with Prader Willi Syndrome often experience repetitive patterns of speech. They will focus on certain words, phrases or conversations and use them over and over again. Experts claim this is part of the obsessive/compulsiveness tendencies associated with the syndrome.

For my son Nicholas, it is a tool he uses to feel secure and gain a tiny bit of self control over a life ruled entirely by thoughts of food. I believe that folks diagnosed with PWS feel overwhelmingly repressed by the tyrant appetite that rules their every thought... every moment of every day.

As a parent of a child diagnosed with this syndrome, it is difficult to answer the same line of questioning, again and again. It requires a superhuman level of patience that can only come from the unconditional love a parent has for their child who is suffering.

When my son was born, I was educated about this and other aspects of the syndrome. I wondered about this bizarre symptom and how I would withstand a constant barrage of repetitive questions from my child? Could I handle the same questions asked over and over again... for the rest of my life? My stomach ached as I thought this sounded like a lifetime of hell to me. I questioned my ability to be a good parent to my son.

It has been nine years since my son was born and diagnosed with Prader Willi Syndrome. In that time, we have developed some interesting lines of conversations. They go something like this...

"Mom, did you have trouble putting the car into the vanilla house garage?"

(The "vanilla house" is a term Nicholas uses to describe a vacation house we visited on Cape Cod.)

"Yes, Nicholas, I did," I reply as I realize the game is officially on!

"Why was it hard to do?" he asks.

"Because it was a tight fit, wasn't it?" I answer.

"Yes, it was," he says, now starting to smile brightly. On his face is a look of welcomed relief, like I have just started to scratch a bothersome itch that was slightly out of his reach.

"But you did it though!" he says proudly.

"Yes, I did it!" I answer triumphantly.

"Why was I able to do it?" I ask. I look at my son and smile, knowing exactly what is going to happen next. He is shining and almost bursting with torturous anticipation. Like a comedian waiting for the perfect timing to deliver his punchline, Nicholas answers....

"Cuz, you're a good driver!" He shouts, laughing hysterically. He is overjoyed and pleased with his expert ability to deliver his much anticipated line on cue. He beams with pride remembering his superhero mother's ability to maneuver a large vehicle into a small garage, a feat that seemed impossible to him. Our familiar dialogue about this event, comforts him. His eyes sparkle, as he looks at me with love, seemingly thankful of my willingness to indulge him in his blinding passion for sameness.

Although this routine gets very old for me, particularly when I am stressed, I also realize that my worst fears have been realized, I am superhuman, at least in my son's eyes. And although my life is indeed monotonous and hellish at times, it is also as if I am living in a world where I am the hero, the champion, the unconditional love of my son's quirky life, a person who is willing to empower him and acknowledge his desperate need for structure... without any questions.

As I am lost in this thought while writing this post, I hear a tiny voice over my shoulder say...

"Mom, did you have trouble putting the car in the vanilla house garage?"

And so it begins again...

Satisfaction lies in mindful repetition, the discovery of endless richness in subtle variations on familiar themes. -George B. Leonard

May is Prader Willi Syndrome Awareness Month. To learn more about PWS or to make a much welcomed donation, please visit http://www.pwsausa.org/.

Please visit me today, May 28, 2011 at:

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