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.




Monday, July 13, 2015

A Quiet Start

Before agreeing to Nick's new placement, I negotiated an important stipulation with the school. I asked and was awarded an opportunity to present a PowerPoint presentation to his new IEP team.

I hoped this “show” would not only educate these folks on the seriousness of Prader Willi Syndrome but also help them to see Nicholas, as the kind-hearted and loving young man he has become...despite his medical complexity.


The "big day" was scheduled for June 15.

I was nervous.

The quality of my presentation would go a long way to either helping or hindering my ability to inspire these folks into action. Could I get this group to see Nick as a child like any other, deserved of their extra attention and effort?

Buy-in from this new team, I believed, would be critical to Nick's ability to be successful in transitioning to this new environment.

I shared my fears about this upcoming presentation with Nick's current teachers.

True to their helpful spirits, they created two documents for me to use. One, was a list of important guidelines I should use in my presentation to help educate a new staff. The other, was a heartfelt letter they addressed to Nick's new teachers. It was a description of everything they had learned in the last few years, tools that aided them in their desire to relate better to Nicholas. It was a helpful guide expressed with their undeniable love and concern for Nick's welfare.

It was exactly what I needed.

Finally, the day of my fateful presentation arrived.


I was lead into a small conference room where about 12 individuals were seated. There were teachers, nurses, therapists, coordinators, secretaries and even the big and burly, Dean of Students. Noticeably absent however, was the Principal and the Director of Special Needs, folks, I believed were critical to inspiring their staff into action.

Despite their absence, I proceeded with my presentation.

It flowed smoothly. I spoke from my heart. I felt calm and confident; anxious to inspire this new group of educators.

They were quiet and attentive. They asked several thoughtful questions. They seemed riveted as their faces rarely left the PowerPoint screen.

But as I wrapped up my presentation with the final slide, there was complete silence and what appeared to be an overwhelming sadness.

They sat frozen in their seats, unable or unwilling to move.

I told them it was not my intention to make them sad; but instead, I was hoping to inspire them. I gave them a copy of the letter from Nick's current teachers.

Still, they seemed unable to speak.

I believe I may have overwhelmed them.

As a long-time caregiver, I am accustomed to the severity of Nick's food-seeking syndrome and the potential it has for causing some dire or even deadly consequences.

I had forgotten what it is like to be introduced to this concept......for the first time.

I do not know if I was successful at motivating this new team.

Or if perhaps, I frightened them instead?

Dealing with the complexity of Nick's diagnosis is a scary and overwhelming responsibility.

It takes a special kind of bravery,

a fearlessness in one's heart,

a steadfast desire to be willing to assist this kind-hearted boy to deal with such a bizarre and debilitating illness.

Does this new group possess this type of strong, united and willing spirit?

I do not know.

I guess, only time will tell.