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, April 7, 2011

Still There is Love

Weston's incident at the school has saddened me. It is hard not to feel like we have failed somewhere in this world. We have failed because we have taught our children that it is OK to be mean and intolerant of others. It has also made me question my own intolerance of others. Am I truly accepting of all others and their idiosyncrasies?

My melancoly mood comes abruptly to an end when I head over to the elementary school to pick up Nick. Here, the universe reminds me that althought there are those who are mean and intolerant, there are also those who accept and love unconditionally.

Children diagnosed with Prader Willi Syndrome suffer from volatile emotions. Located in all of our brains is the hypothalamus. It is this part of the brain that reguates things like appetite, body temperature and our moods. When upset, children diagnosed with PWS can easily fly into a rage since their bodies are unable to regulate emotion.

My son, Nicholas suffers from this difficulty. Most days, Nicholas is a sweet, loving, laid-back little boy. There are incidences that occur however, that can send him immediately into tantrum mode. During these times he has hit, kicked, slapped and fallen stubbornly to the ground. Yes, sweet loving little Nicholas turns into a monster.

As Weston and I waited in our usual spot on the bench in the school, Nicholas was walked over to us by Mrs. M, Nick's teacher, and Mrs. D, Nick's aide. Their faces look subdued.

"How'd he do today?" I asked.

"He had a few moments." Mrs. M replies.

"Did he hit?" I ask.

"Yes." she answered.

"I'm sorry." I said.

The next morning Mrs. D spoke to me honestly.

Lisa, she explained. I am a Mom too. When I took this job I knew what I was signing up for. We love Nicholas. He tries very hard to behave well, he can't help it sometimes. You do not ever have to feel badly. Mrs M and I love him.

And just like the words from Mr. Walsh, I realized that Nicholas was indeed loved by many in his school.

It was the validation I needed, that although the world can be so very cruel at times......still there is love.