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.
Wednesday, June 13, 2012
This morning, we waited in our usual spot on the benches. The children seemed happy and buzzed around us like bumble bees.
"What's going on?" I asked Izzy.
"Oh," she said, "The yearbooks are in."
Small groups of children huddled together in the hallway to flip through the glossy pages of the coveted books. They laughed and giggled, pointing at photos of their fellow classmates.
"Hey look, there's Nick!" said Lexi and brought a book over for us to see.
Nicholas looked at the picture of him on the playground.
"That's me!" he said laughing happily.
Izzy plops down on the bench beside Nicholas.
"Nick, will you sign my yearbook?" she asks enthusiastically and hands Nicholas a pen.
For a moment, I froze. I wasn't prepared for this.
Nicholas suffers from very low muscle tone. His fine motor skills are poor and well behind his peer's abilities. Even by PWS standards, Nicholas is delayed physically. His hand strength and pencil grasp are flimsy, he struggles just to write his name.
How could I explain this to the kids, I thought to myself. Would they understand?
"Izzy," I said, Nicholas has muscles that are very weak. It is very hard for him to write his name." I explained.
"That's OK," she said quickly, "He can sign it right here." She opens the book to an empty page.
"His signature is large, and may take up most of the page. Is that OK?" I ask.
"That's OK, look here Nick, let me help you," she says and places the pen into his hand. She helps him grip the writing utensil properly and Nicholas begins to write his name.
It looks something like this....
"Cool," Izzy says. "Hey guys, look, Nick just signed my yearbook." She brings the book over to a small group of giggling girls.
"Aw, that's cool, I want Nick's signature too," says Fiona as she brings her book over for Nicholas to sign.
It isn't long before a long line of boys and girls forms in front of Nicholas.
I feel like Nick's publicist as I help him to sign the collection of books.
The kids are genuinely happy and once again I am moved to tears by their unconditional love and devotion to the kind-hearted Nicholas.