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, February 5, 2015

What Real Inclusion Looks Like

Every moment and
every event of every man's life on earth
 plants something in his soul.
-Thomas Merton

I believe in soul mates. Not the romantic, man-of-your-dreams kind of soul mate, but instead folks who come into your life for a reason. With these folks you share a strange feeling of familiarity and friendship, a connection that seems to defy time. There is a feeling of a united purpose, that this unity serves a greater good which will benefit something or someone greater than yourself.
You may recall the long battle I fought last year to allow Nicholas to spend another year at his current elementary school.

At this institution, is a unique group of educators, general  and special education teachers who believe they can make a difference in the world by creating a more effective form of inclusion.

Two years ago, they asked me to come speak to their students, to educate them on the specifics of Nick's disability. They asked me to teach their students how to relate better to Nicholas.

To read more about the success of these presentations click here and here.

This week Nicholas and his best buddy, Alex were asked to participate in the Sixth Grade Ancient Egypt Exhibition. Here, each student was asked to design and manufacture a symbol of ancient Egypt. Nicholas received a lot of help from sixth grade teachers and students in preparing his very cool-looking pyramid for the show. He was very excited.

Tuesday, parents were asked to visit the classrooms to observe the student projects. For most parents it was a time to view their child's handiwork. But for me it was something more.

I knew my son's project was not going to be an award winning creation. I was not visiting to evaluate his manual dexterity or his fine motor skill. I was not there to compare his design skills to others. In fact I am acutely aware of just where my son rates on the scale of mental and physical ability. No, unlike others, I was more interested in observing how Nicholas related to his classmates. Does he belong? Is he valued? What type of interaction takes place with "typical" students?

What I saw, moved me to tears.

These teachers allowed me to see the fertile seeds of compassion and tolerance they have instilled in their students. Take a look......

Mr. B modeling the "get close" communication technique to his students.
Notice the student's positions and body language as they happily converse with Nick.
This is Nick's principal, Mr. G
Nick enjoys his laid back energy
He likes to hang with this down-to-earth and comfortable leader. 

This is Mrs E
She was the initiator of this new kind of inclusion.
In the white sweater is Ms E, sped teacher to Nick and Alex
She has been instrumental in facilitating these events with regular ed teachers.
Here Alex, shows the pretty girls his pyramid (after checking with Ms E)
And last but not least another one of my favorite photos
Nick talking with "the girls"
My visit to Nick's classroom was a day I will never forget. There was discussion, respect and most importantly, interaction between Nicholas and his classmates. It was clear that Nick was valued as an important and worthy member of his class.
For me, it was a soul moment, a rare opportunity to see the goodness, the value, the understanding and perhaps most importantly, the love he brings to others. It also gave me hope for a new generation of children who do not fear special needs students but instead, embrace their unique gifts.
This is the kind of interaction that can occur when typical students are given the tools to relate to kids who communicate differently. This is what happens when the stigma and fear associated with "special needs" is removed. 
These children and these educators have given me hope for our future.