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.




Tuesday, September 16, 2014

Charlie-in-the-Box

I have two children diagnosed with special needs and although Nick's issues are extreme, and he is challenged physically, mentally and emotionally....it is my son, Weston who is the most difficult to see.


Weston suffers from the "invisible" diagnoses of severe ADHD and mild Autism/Asperger's. The symptoms of these diagnoses are behavioral, not physical in nature, so teachers and students do not understand why this handsome, young boy acts so quirky, unruly and difficult at times.

Because of some significant learning delays, he is often grouped with children, like his brother Nicholas, who are diagnosed with more noticeable physical delays. He spends a good deal of his day in this substantially separate classroom. He is not, however, upset about this placement. In fact, he enjoys his time in this nonjudgmental setting. Among these differently-abled children, he has emerged as their steadfast leader.

He is without a doubt.......Charlie-in-the-Box.


Charlie, you may recall, is the official sentry of the Isle of Misfit Toys from the children's Christmas special, Rudolph the Red Nose Reindeer.

Of all the castaway toys, Charlie-in-the-Box is the one who appears "normal". Although he is also afflicted with a significant difference, still, he acts as a leader and official spokesman for all of the misunderstood toys.

Weston is a lot like Charlie.

This summer, Weston participated, once again, in the Spotlight Program. This is a week-long program, offered by the local ARC, for children diagnosed with social difficulties. Here, they are grouped with other children who also suffer from poor social skills. With the assistance of hip, young counselors, these quirky kids learn how to relate better to other children and develop social graces.

This year, Weston was the oldest of the group, finding himself once again, in familiar territory.

But this year, something was different, Weston began to embrace his innate ability to lead this group of shunned and disregarded children.

I believe that children (and animals) can see into people's souls. Instinctively, they identify the few folks among us who possess kind hearts and gentle spirits. They naturally gravitate toward these caring individuals, basking in the company of these delightful and engaging individuals. Weston is indeed one of these lovable leaders that children can't seem to resist.

I notice that wherever we go......Weston seems to attract a crowd of faithful, young followers.



Like the Pied Pier of Hamelin, he easily lures a long line of small children with the beautiful sound of his magic flute.


 He creates interesting games and activities for the gang to enjoy and ensures everyone is behaving with kindness and a sense of fair play.

But I am, of course, Weston's mother. I wonder sometimes if I am seeing him with open and unbiased eyes?

So, I was pleasantly surprised, when over the summer, I received this evaluation of Weston from the Coordinator of the Spotlight Program.

"Weston was an active participant and valuable group member this week. Many of his peers gravitated towards his easygoing nature and great sense of humor. He joined in with the group and talked to familiar and unfamiliar peers easily, oftentimes discovering common interests. Weston was a natural conversationalist and was open about his hobbies and what his interests were. Many of his peers were excited to spend time with him and engage in conversation."
 
and then there was this.......
 
"I wanted to send you a note today about how impressed I was with Weston today. He was AMAZING playing mini golf today. It was a kind of crazy day, and he was so flexible and understanding. Once the game got going, he was so calm. Some of the kids were really struggling, and Weston was calm and so patient with all the kids. The most remarkable thing was all the kids were listening to him. Weston was telling them whose turn it was and keeping the rhythm of the game going in such a kind way. I was thrilled and so impressed. He is a really great guy!"

I do not know if it is because Weston is the sibling of a brother who is so medically complex, or if it is his own personal struggles overcoming an invisible disability and feelings of isolation that has made him such a patient, tolerant, kind and loving human being, an irresistible energy that brings much goodness to the left-behind children and misunderstood souls of this world.


I am anxious to see the man he will become.