Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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 28, 2013

The Interview

Weston is heading off to high school in September.

Holy shit.

Recently, he visited the local technical high school where he decided immediately, that this was the place for him. He was energized by observing unique classes held in work shops and auto garages. But it was as if his prayers were answered when he noticed students encouraged to get their hands dirty.

There were swarming numbers of new people, friendly faces unaware of Weston's social and academic difficulties. He was surrounded by teenagers, who, like him, struggle to feel accepted.

He has told me many times that he is ready to quit public school and enter the working world. Yes, this new school option seems like a good fit for Weston.

On Friday morning, representatives from this technical institute will be visiting the middle school to interview potential applicants. Weston will be one of them.

He came home excited about his first ever interview.

He calmly explained to his clueless mother that the first thing we needed to do was purchase a new shirt, slacks, belt and tie.

I wondered who this child was standing beside me?

Over dinner, Pete and I decide to create a mock interview to help Weston prepare for his big day.

Pete began the rehearsal:

"So, Weston, tell me a little bit about yourself"

Weston stares blankly at his father and asks,

"Ahhhh, what do you mean?"

Not exactly a good first start for our aspiring young technician.

"You know, what is it that makes you who you are?'

"I don't understand?" he says, his voice sounding panicked and confused.

Pete is frustrated and searches for the correct wording.

"Describe yourself," he blurts, using the minimalist language Weston prefers.

"Ohhh!" Weston says, "Now I understand. Ummmmm, well, let's see, I don't know."

There is a long pause.

In my mind I picture the big burly interviewer laughing to himself as he whispers,

"Not a chance, kid!"

There must be something you like to do?" Pete asks, trying to regain a patient tone.

"I know, I like to play video games!" Weston answers enthusiastically.

Pete and I both sink in our chairs.

"Yes, Weston that is one of the things you like to do. But it is not what this school probably wants to hear," says Pete.

"Why not?" asks Weston.

Pete shakes his head and struggles to explain this one to Weston.

"Well, this school wants to hear about the things you like to do outside in the fresh air. They want to know what you do with other children."

Once again, the vision of the stern interviewer comes leaping to my mind as I picture him pounding Weston's application with a large red REJECTED stamp.

"I don't understand," said Weston. His compulsive nature is now beginning to thwart his attempt to identify any of his other interests.

"Weston you enjoy riding your bike, going camping, taking hikes and playing basketball. You also participated in track last year. There are lots of things you like to do." I said.

"I know Mom, but I am afraid I am going to blurt out video games by mistake,"

"Forget about it Weston," Pete says, "You need to just relax and be yourself."

Weston is now starting to visibly sweat. He takes a deep breath.

"Let's try again, I say calmly, "Weston, what are your strengths?"

Weston looks at me as if I am speaking a different language.

"I don't understand?" he says crossing his arms and slumping into his chair.

Silently, I begin to pray and visualize the mighty interviewer transforming into the gentle Mother Theresa.

"What is good about Weston?" I ask.

"Ohh, I see now, well" he says, "I have a big heart."

Now we're rolling I think to myself.

"What is something difficult that you have mastered?" asked Pete.

"That's easy," says the honorable Weston, "I take care of my brother."

He looks at us and smiles as he sits up straight in his chair.

"Can I tell them about Nick?" Weston asks eagerly.

"Yes, of course," says Pete, "It is an important part of who you are."

As I watch Weston's expression, I notice that for the first time during our practice interview, he is relaxed and comfortable. It is as if Nick's calm demeanor has transformed Weston's restless energy into a sudden burst of confidence and charm.

I think back to Nick's many hospital visits. The dreaded IV sticks that morphed the mild mannered boy into a screaming banshee. Often it was Weston who single-handedly possessed the soothing magic to quiet his suffering sibling.

He has weathered ruthless attacks from callous teenagers who have called his brother a faggot and a retard. And although these ignorant remarks have wounded his heart deeply, as a protective older brother to a sibling diagnosed with special needs, he has found his courage and developed a deep and caring character.

It is clear to me that caring for Nicholas, has brought out the very best in Weston.

"Ask me about Nicholas," Weston says smiling confidently.

"How do you help your brother?" Pete asks.

Weston sits up taller in his chair and explains intelligently,

"Well, I help my brother when he visits the hospital. He has been diagnosed with Prader Willi Syndrome and suffers from some night time seizure activity. He needs to have an EEG performed once a year. He doesn't like it because there are a lot of wires that need to be stuck to his head. To clam him down, I hold his hand and sing to him."

 I feel hot tears begin to swell in my eyes. Pete has abruptly left the table and is headed into another room but not before I see him wipe his eyes.

"OK, Weston, great job, I think that is enough practice for now." I say quietly.

"Awww," Weston says disappointed that the interview has now come to a close. He jumps up from the table, grabs his Ipod and heads upstairs dancing and singing along to his favorite tune. The fear and nervousness gone, the happy cyclone of energy has returned to his original state.

I try to collect myself in the kitchen and realize that although our mini interview did not produce stellar results, it has enabled me to better understand my son.

He is not phony or pretentious.
He has no desire to deceive others.

He is straight-forward and honest, with a pure heart and a true spirit.

And if you want to know the real Weston, just ask him about things he cares about.

Our mock interview has done little to help Weston. But for me, the lesson is priceless. If I really want to help my son prepare for his interview, then I need to allow him simply to be himself.

I have a feeling he will have no trouble explaining to the phantom interviewer, exactly what (and who) makes him tick.

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