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, November 10, 2013

A Sixth Grade Introduction to Prader Willi Syndrome

This year Nicholas is in sixth grade.

You may recall last year when he was transferred to this new public school, where, within a few short months, he learned to read.

As part of his transition process to the next grade, I visited the school to speak with his new sixth grade teachers and educate them on the complexities of his disorder.

It must have made an impression, because the very next day, Brenda, one of his teachers came to speak to me.

"Lisa, would you mind coming in to school to visit with the sixth grade class and give a presentation on Nicholas and what it is like living with Prader Willi Syndrome?"

I was pleasantly surprised. In the eight years Nicholas has been enrolled in public school, this is the first time someone has asked me to speak.

"I would be happy to speak to your students," I replied trying to suppress the nervous knots that were beginning to rise in my stomach and the painful memories of high school speech class.

But a tiny voice inside my head drowned out the rising fear and pleaded with my self-conscious self.

Do it for Nicholas!  The voice said rather emphatically.

And so Brenda and I agreed that I would speak on Thursday.

At home, I designed a PowerPoint presentation relying heavily on the skills I had acquired long ago as a sales rep in the medical device industry. I filled my project with drawings, photos and visual aids, including photos of the kind-hearted Nicholas.

I finished my presentation, practiced it several times and waited nervously for Thursday to arrive.

My anxious mind began to race, wondering what these sixth grade children would be like?

Would they welcome this kind of discussion or would they simply ignore me?

Would the boys in the back snicker at Nicholas?

Would the girls be indifferent and keep talking among themselves?

How would I handle this?

 But once again the persistent voice inside my head spoke.

Relax and speak from your heart, it said to me.

Thursday arrived and a group of sixth graders met me in the lobby to escort me to their classroom. One of the boys asked if he could help me carry my supplies.

Perhaps this wasn't going to be so bad, I thought to myself.

As I arrived in the classroom the children grabbed their chairs and surrounded me in a semi-circle.

Nicholas and his teacher sat next to me

The students were silent as I began to speak.

There was no snickering.

There was no talking,

The children sat and listened intently.

No one made a sound.

Ooh oh I thought, maybe I am losing them.

But almost as if they heard my thoughts, several hands began to rise.

"Does it hurt Nicholas when he gets a shot?"

"Is there any food he doesn't like?"

"What is going to happen to him when he gets older?"

"Do all of these things happen to Nicholas because of a that tiny missing piece in the 15th chromosome?"

Their questions were astounding. They were thoughtful, heartfelt and intelligent. They wanted to know more. Every slide initiated more and more questions. As time went on they did not tire. They wanted to know more about Nicholas.

"What if I don't understand Nicholas?" one girl asked.

"Does the EEG hurt him?" another asked.

But perhaps my favorite question of all came from a quiet boy with long hair sitting in the back.

"Do you go to church?" he asked.

I was surprised that such a young boy would wonder about our ability to heal on a spiritual level.

When I finished speaking there were so many hands in the air, I couldn't get to them all since we were running out of time.

I thanked them all for their thoughtful and intelligent questions.

It was a moment in my life that I will never forget.

Since then, I have had a chance to digest my experience with these students.

I do not believe that the wonderful response I received was because of the quality of my presentation.

In fact, I do not believe it had anything to do with me.

I do believe that for the first time in their lives, someone was teaching them how to relate to children who are different.

I believe they embraced the opportunity whole-heartedly.

They were respectful and engaged, they asked honest questions from their hearts and when the presentation was over, they did not want to leave.

They have given me much hope. I believe their generation is ready to make a difference.

And Nicholas? He listened quietly to the entire speech, adding several enthusiastic comments like,

"Hey, there's my magic shoes!"


"That's what I look like when I get my buttons put on in the hospital."

He enjoyed the moment and true to his spirit, when it was over, he thanked me for speaking to his class.

This experience has helped me to believe that our life's purpose is an important one and although we experience much hardship as a family, we have an important message to deliver to the world.