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.




Thursday, October 11, 2012

The Skeletellectual

For the last two Halloween seasons, Nicholas has taken his costume cues from his older brother Weston. Being a teenager, however, Weston is all about the gore...a sharp contrast to Nicholas and his kind and gentle spirit.



In true younger brother fashion, Nicholas tried his hardest to emulate his gory ghoul-loving sibling, wearing scary masks and costumes that did not reflect the true sensitive personality underneath. A brave little soldier, he suffered through his sensory issues and wore scratchy, smelly masks that made it difficult for him to see and breathe.



This year however, for the first time in his life, Nicholas has decided to ditch this adoring younger brother persona and finally embrace his own unique style.

"How about this one?" I asked Nicholas as we scanned the ransacked racks of Halloween costumes at our local party store.

"No, Mom, that's too creepy,"he said shielding his eyes from the gory ghost mask.

I searched further and found a silly Mummy costume. While the mask was much less macabre, the costume had rows and rows of flowing bandages, a definite negative for a sensory-sensitive costume seeker. But I thought I would try just the same.

"How about this Mummy guy? He looks happy?"

"No Mom, he's too scratchy." Nicholas replied.

"A Ninja? A robot?" I asked hopefully.

"No Mom!" Came Nick's sharp response.

I was getting desperate

"Well I don't know Nicholas, we're running out of options here."

I turn the corner reluctantly, headed toward the next aisle of lame Halloween costumes when suddenly, I spot the glow-in-the-dark display.

"Nicholas, LOOK!" I said enthusiastically.

There amidst the strands of pumpkin lights and orange flashlights  was a pair of battery-operated light-up eye glasses.

"Cooool" said Nicholas, who is, as you know, attracted to all things that glow.

He quickly tried on a pair of the plastic glasses and turned on the magic button.

They fired up brightly with a warm fluorescent blue glow and I realized we had finally found what we were looking for.

"These are so cool!" Nicholas said smiling from ear to ear.

I grabbed the glasses and headed toward the check-out counter when I spotted a display of Halloween hoodies. They were black cotton, zippered jackets perfect for kids with sensory issues. On each jacket was a Halloween design.

Hey Nick, look at these, I said and once again, the kind-hearted Nicholas was smiling from ear to ear.

"Which one would you like?"

Since the jacket was similar to one he wears every day, he now had the courage to be as scary as Weston. He picked out the creepy skeleton hoodie. And for under $10, I now had the perfect Halloween costume for Nicholas.

This Halloween Nicholas will embrace his true and unique self to become....... the skeletellectual, the scary, smart, kind, sensory-sensitive lover of all things that glow!



It never ceases to amaze me that my success or failure as a parent of a child with PWS is directly proportional to my ability to solve a problem.

I wonder what's coming next?

Happy Halloween to all our readers.