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.




Tuesday, November 1, 2011

The Gory Ghoul Who Wasn't

Like most younger brothers, Nicholas wants to be just like Weston.

Lately, he has been copying his older brother's speech, mannerisms and favorite expressions. I was caught somewhat off guard the other day when Nicholas, in a moment of anger, folded his arms firmly across his chest and told me:

"I am not taking any more of your crap."

I tried very hard not to laugh, listening to my loving, young son practice the fine art of becoming a teenage smart mouth. But Nick's gentle nature is not easily subdued and it isn't long before I hear,

"I'm sorry Mom."

So, I guess it's not surprising that on Halloween night, Nicholas once again looked to his brother for cues.

Weston, now entering his teenage years, is all about "the gore". He embraces the world of blood and guts, skulls and bones and artificial weaponry.

This year, he decided he would be the villain from the movie "Scream". We bought a mask, and a fake bloody knife and he was good to go.




Nicholas.....seeing his brother decked out in such macabre gear, decided he too would don the clothing of a maniacal killer. He abstained from wearing the skeleton costume he chose to wear this year and decided instead to dress in the ghoulish mask that Weston wore a year ago.

Nicholas has many sensory issues, so wearing a plastic mask over his head for the entire night was nothing short of miraculous. But there was something wrong. He seemed to be struggling with his brave decision to dress as a devilish demon of the dark.  This outer "killer" dress wear was so dramatically opposed to his kind inner nature. He seemed uncomfortable wearing it. The scary brutal outside camoflauging the warm and tender heart inside.



As we took pictures and gathered our necessary trick or treating supplies, Nicholas became very quiet, struggling internally with his bold decision.

"Nicholas, do you have your flashlight?" I asked, trying to distract him from feeling uncomfortable.

"Yes," he replied, using only one word to answer me. My plot to relax him doesn't work so I try again.

"How about your treat bag?" But my result is still the same and he answers with a solitary...

"Yup."

We start to head out the door, Nicholas still unusually quiet and lost in his thoughts. I can swear I hear his brain fighting with itself. We get to the bottom of the steps and walk halfway down the walkway when Nicholas suddenly freezes in his footsteps.

"WAIT!" he shouts. "STOP!"

"What is it Nicholas?" I ask, certain that he has changed his mind about wearing the mask.

"I forgot something!" he explains.
"I need to go get my Dora lunch box!" and he runs back in the house.

The gory ghoul, whose creepy face is covered in blood now comes out of the house clutching his pink Dora lunchbox.

"I'm ready now Mom," he tells me.

My brave son's internal struggle is finally over, as he has masterfully thought of a way to embrace the blood and guts of boyhood and brothership while still being true to his own sweet self by using a precious tool that gives him some much needed comfort.

We got a lot of interesting looks walking through the neighborhood dressed as a gory ghost holding a pink Dora lunchbox......but isn't that what Halloween is all about?


  Nicholas not quite ready to embrace Weston's enthusiasm