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, March 13, 2012

The Nonconformist

Due to a recent change in medications, Weston is a much calmer and happier boy.

He has been using this new found quiet time to get to know himself better.

He has discovered a new favorite past time.... watching movies.

In true "boy" fashion, he has instantly become a die hard fan of Arnold Swartzenegger. He has recorded and watched all of The Terminator movies and can now recite (in a deep Austrian accent I might add), all of Arnie's most popular lines, 

"I'll be back!" he'll tell me as he takes the trash out to the garage.

"Hasta la vista, Baby!" he'll say to me and Nicholas as he leaves us for school each day.

Now, while I am happy to see my son enjoy a new form of self expression, I was not prepared for what happened this morning.

"Mom, I want to wear my hair all spiked up like Bill Paxton in the beginning of the Terminator movie?"

"What?" I asked, certain that this was a joke.

"No, really Mom, I want to do it."

Keep in mind that in the movie, Bill Paxton looks like this...



"Weston," I tried to explain calmly, "if you wear your hair like this, all of the kids at school will tease you."

"All of them!" I added for emphasis.

"Why will they tease me?" he asked sincerely.

"Because you will look very different and very creepy."

"I don't get it?" he asked "Why do they care what I look like?"

"Kids just pick on other children who are different or who are trying to become noticed in a negative way."

"I don't care," he said, "I really want to do it."

At this point, Pete has over heard the conversation and adds his two cents.

"No really Weston, kids are mean.They will be merciless!"

"I don't care," Weston exclaims emphatically.

Pete and I suddenly realize, we have lost him. Any chance we had to change his mind, has passed. Our emphatic pleas to save our son from merciless ridicule were all in vain. We have done nothing but convince our son that this is exactly what he wants to do.

"I don't care what others think. I want to do this. I don't think anyone is brave enough to do it and I want to try."

Pete and I look at each other and silently agree that we must allow our child to express himself even if it means he may be attacked by the wolves. We must support his bravery.

"Do you think Miss Arena will like it?" he asked me. "She always supports me." he explains and suddenly I realize that not only is my son taking a huge social risk by trying to express himself differently, but he is also curious about the people in his life. Will any of his friends support this risky behavior? What will his teachers think? What will the girl's think? He was testing their loyalties and he was not afraid of what he would learn.

"Well Weston, if you dress this way, you may find that no one supports you. What would you do if that happens?" I asked trying to prepare my son for the inevitable.

"I'm OK with it Mom!" he said.

"Are you sure?" I asked, You know you can always wash it out in the boys room."

"Mom, he said, I need to do this."

"Alright Weston," I agreed desparingly.

Now, I must admit I am not a hair stylist, lacking even the slightest ability to "do good hair."

But somehow by using water, gel and hairspray, I was able to help my brave son, to look like this...


Weston was pleased. He thought about wearing his father's old leather jacket but decided instead to wear his gory skeleton hoodie. He was happy.

Reluctantly, I took my son to school. I told him that I was proud of his bravery. I told him that I did not have that kind of bravery when I was in 7th grade. I worried alot about what everyone thought. I admired his ability to express himself so boldly. Of course I couldn't resist the urge to remind him once again that if all went sour, he could wash his hair in the boys room. As I dropped him off at the front door of the school, Weston smiled at me and said,

"Don't worry Mom!"

I think in some strange way Weston was making a statement. I think he already feels like an outcast at school and what better way to overcome that pain than by embracing the "outcast experience". I am proud of my brave son. I do not know if he will come home in one piece, but he will come home knowing he dared to be different.

I think as a parent, this is one of my most difficult experiences ever! Come on 2 o'clock!

"Don't worry so much Lis," my husband said supportively, "He will probably come home with a pocket full of girl's phone numbers."

We will see.