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.




Sunday, July 13, 2014

Clean as a Whistle

The summer sun warms our bare arms as Nicholas and I walk down the quiet, country road. We gather our usual collection of tiny stones to drop down the sewer when Nick notices a perfect specimen. He runs over to the patient pebble, bends over to collect it and as he rises he lets out a long breath of empty air.

"Wssssssshhhhhh"

"Hey Mom," he says excitedly, "I whistled!"

He purses the flaccid muscles of his checks together and tries to create a steady stream of air to push through the too large hole he has formed with his lips. Once again the end result is the same and instead of a crisp whistling sound emanating from his happy face, out comes a loud, long rush of music-less air.

"Awwwww," he says disappointedly and tries again.

"Wssssshhhhhhh"

And suddenly it is as if a poisonous arrow has been sprung from the bow of an anonymous assailant; a deadly spear pierces my unsuspecting heart as I realize that the effect of low muscle tone has prohibited my 12-year-old son from performing this important childhood rite of passage.

As the mother of a child diagnosed with special needs, these are the moments that hurt most.

It is these indistinct moments in time when you are finally feeling successful at creating some childhood "normalcy" when something like this will happen, a kind of in-your-face reminder that debilitating disease will always be there to rob your child of simple pleasures.

I feel powerless and angry.

I resist the overwhelming thought that plagues me.

I have failed my son.

These sudden moments of realization feel like personal attacks.

Like I am the sole victim of a special delivery "fuck you" from the universe.....designed specifically to tear my fragile mother's heart to shreds.....again and again and again.

But my stubborn persona resists the urge to wallow in special needs parenting paranoia. Instead, I decide to succumb to the pain. I feel it, turning my head away from my son and allowing the hot tears to rush over my checks.

Nick continues to blow air from his mouth.

"Wsssssshhhhhh"

"Wssssshhhhhh"

He is not bitter or resentful.

He's having fun.

"Mom," he says, trying to re-engage me. "Look, I'm doing it!"

And although he is nowhere close to creating the perfect sound of a clean, clear whistle,

still he believes.

I stop my downward spiral into self pity and try to embrace Nick's catchy optimism.

Together we blow air through our mouths, creating some silly sounds.

"Phshhhrzzzt" Nick blows.

"What was that?" I ask and we both begin to laugh hysterically.

 
 
About Hypotonia:
Children diagnosed with Prader Willi Syndrome experience hypotonia or low muscle tone. This is a condition that causes muscles to lose their ability to contract properly, causing the muscle to become weakened and flaccid. It is not a condition related to muscle strength, so no amount of weight training or conditioning will cure it. Instead, hypotonia is a result of a deficient neuronal response from the brain caused by a malfunctioning nervous system. Many internal bodily functions rely on the proper functioning of our muscles. Things like breathing, eyesight, digestion and even heart rate are negatively effected by this weakness.