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, July 9, 2015

The Graduation Machine

Many of you may recall the pain of Nick's graduation ceremony last June.
If not, click on the title below.

No More Secrets

As a family raising a child who suffers from Prader Willi Syndrome, we are accustomed to weathering some extreme behavioral outbursts during the most inopportune moments. We have experienced some noteworthy outbursts from our youngest son during trips to restaurants, grocery stores, camping trips, outdoor activities and special occasions.

We have become very efficient at rolling with these interesting moments, and after many years of surviving the unavoidable embarrassment of these traumatic scenes, we have learned to laugh about them.

We have discovered the key to limiting the number of these episodes is:

Preparation, preparation, and more preparation.

We must prepare for everything.

Every event we participate in,

every trip we take,

every visit to a local restaurant,

we must think about how it will effect Nicholas.

We use a variety of helpful tools and techniques to ensure Nicholas is successful, simple things that can mean the difference between a happy outing or a torturous tirade.

We must ask ourselves questions before each event.

Is it going to be loud?

If so, do we need to bring head phones?

Is the event going to occur during snack or mealtimes?

If so, do we need to bring snacks?

Is it going to be crowded?

If so, do we need to arrive and leave early?

Our life is about instinctively employing these tools so that they may aid Nicholas in negotiating this very noisy and upsetting environment called life.

But this is our fate, and we accept it.

What we did not expect however, was that there would be others in this world who would be willing to do the same for us.

I have spoke often on this blog about Nick's 6th grade teachers. I spoke of their bravery, their compassion and their desire to create a successful inclusion program for Nicholas.

You may recall the brave Mr. P rolling with Nick's graduation outburst and presenting him with his certificate in his classroom, surrounded by many of his beautiful friends.

Perhaps it was the memory of this fateful experience that motivated all of Nick's teachers to achieve an even higher level of special education understanding.

Whatever it was that inspired them, this year they became soldiers.

Folks like us who were ready for anything.

They decided that this year's graduation event was going to be a good one....or they would die trying.

They met independently as a staff and evaluated the entire graduation experience. They asked important questions; like what are Nick's sensory challenges and how should we prepare?

Each team member was assigned an important role in accommodating Nicholas. It was important that they worked together. They provided the prerequisite tools to aid Nick during the ceremony. He would have his headphones, snacks and a seat by the door. Inclusion was once again their top priority, "typical" students were motivated to assist Nick by participating in their carefully crafted script. They developed a system of silent signaling, so that all of them could adjust if things went terribly wrong.

It was indeed a work of art.

Coordinating the entire effort, was of course, the competent, Ms Emily who helped Nick and his best buddy Alex, to practice for this event. She showed them where they would be sitting and what was going to happen. She created hand signals that they could use if they felt overwhelmed.

I am happy to report that when the "big" day arrived, the ceremony ran like a well-oiled machine.

These teachers were like well-rehearsed actors, each of them playing their enthusiastic part with confidence and ease. Their entrances and exits were carefully timed. Pete and I marveled at their precision. They adjusted easily to every situation, carefully monitoring Nick's mood and overall demeanor. They signaled each other when Nick became restless or needed a break. They were ready for anything. It was clear at least to me and Pete that they were well-trained and whole heartedly invested in making this event a special one.

All the world's a stage,
And all the men and women merely players,
They each have their exits and entrances
And one man in his time plays many parts
Their hard word, heartfelt participation and love for Nicholas were exactly the right solution to Nick's graduation success.

He was awarded a special certificate for outstanding participation in music and retrieved his diploma amidst a thunderous applause.

I noticed something interesting, as I looked out over the audience, I was surprised to see that much like last year, there was a single man, unlike the others, who stood out from the crowd.

This time it was an elderly gentleman. But he was not standing in the back of the room like before, instead he was seated directly up front. He was enthusiastic and happy pumping his arms up and down in joyous celebration. It was as if his whole body was smiling brightly. He lead the joyous crowd in a raucous celebration designed for a single purpose....to acknowledge Nicholas and his hard fought graduation accomplishment.

I have no words to describe our joy.

And no thanks that will ever be deep enough to express our pleasure of knowing such special souls.

On Nick's face was an expression of confidence, the kind that comes from challenging one's self and surviving, from sharing and working with others to achieve something great.

During the ceremony, these special teachers had another surprise up their sleeves. They made a special announcement to the audience thanking me for my efforts in educating them on the importance of inclusion. They thanked me for speaking with their students. They thanked me for sharing Nick.

It was a touching and meaningful moment.

One I will never forget.

Although our life raising Nicholas is a difficult one, it is these moments that I cherish, experiences that have an ability to change others; to help them to learn and grow. I am comforted to know that among us here on earth are the special few who have the potential to create a more thoughtful, loving and accepting new world.