Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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, July 28, 2012

The Tao of Special Needs Parenting

"It is as we expected," the geneticist said to me, "your son has Prader Willi Syndrome."

And suddenly, like my new born infant, I too began a difficult new journey.

My son's birth was traumatic and frightening. It was as if someone had maliciously thrown me into the cold, deep end of the pool, knowing I could not swim.

Instinctively, I realized, that in order to survive, I needed to keep my body in a constant state of motion.

And although this survival technique of treading water did indeed save my life, after many years of thoughtless, continuous movement, I began to realize, I wasn't really getting anywhere. More importantly, I was starting to become fatigued and dispirited.

As a parent of a child diagnosed with PWS, I am accustomed to chaos.

It is not unusual for my son to experience unexpected surgeries, unwelcome lab results, unusual seizure activity, poor cognitive testing and additional diagnoses.

I am not complaining since it is this unusually high level of stress that has enabled me to understand the true meaning of the word resiliency. But the greatest difficulty I face amidst all this hardship and stress, is my inability to find a sense of peace.

How do I disassociate my son from his syndrome, seeing him as a delightful boy and not a devastating diagnosis?

How do I stop living in the past, reflecting on his traumatic birth?

How do I stop fearing the future, and what life will be like for him when I am gone?

How do I help my family to live in the now, happy and unaffected by what may lie around the next corner?

How do I quiet my mind?

In trying to answer these difficult questions, I have discovered that my spiritual path has somehow become fast-tracked. It is as if someone pressed the fast forward button, hurling my life forward at break-neck speed allowing me to ask those difficult life questions sooner than expected, enabling me perhaps to discover my one true path.

Perhaps not coincidentally, I stumbled upon the word Tao, a word Chinese philosophers use to describe this spiritual journey.

In Taoism, the object of spiritual practice is to harmonise one's will with Nature in order to achieve effortless action. This involves meditative and moral practices, focusing on the concept of virtue.

Can you coax your mind from its wandering
and keep to the original oneness?
Can you let your body become
supple as a newborn child's?
Can you cleanse your inner vision
until you see nothing but the light?
Can you love people and lead them
without imposing your will?
Can you deal with the most vital matters
by letting events take their course?
Can you step back from you own mind
and thus understand all things?


The Tao philosophy also embraces the concept of "The Interdependence of All Things" and was profoundly influenced by observations of Nature. Taoist philosophers determined that everything has its complementary opposite. More than this, they saw that everything can only be understood by comparing it to its opposite.

Day is only day in relation to night, cold only cold in relation to heat, and soft only soft in relation to hard. Looking deeper still, they realized that these relationships are in a constant state of flux: Day flows gradually into night and back again.

All things, then, are interdependent. By observing the processes of Nature, the Taoists say, we can come to some understanding about the meaning of our lives and about our place in the world.

A Zen Master will also describe our minds as loud drunken monkeys while our Buddha-self can only whisper. The monkeys must be soothed into a quiet state to enable ourselves to hear.

Ironically, my "disabled" son has always seemed to possess an "abled" and enlightened spirit. He is immune to the sound of screeching thoughts. His kind and gentle nature is incongruous to the harsh and chaotic lifestyle that we lead. I can't help but wonder if this too holds some significance?

Are the answers to my questions buried somewhere beneath these opposing influences?

Do I impose my will, making extra appointments with therapists and specialists, or do I need to embrace Nick's gentle nature, release my fear, accept our life and enjoy the time we share together?

Perhaps to help my son, I must simply allow him to be.





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