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, March 7, 2013

Distraction and the Magic Medicine

Distraction, distraction, distraction.

If you are the parent of a child with PWS, this is the most important concept you will ever learn in your entire life.

It will save your sanity, your child's sanity and the health and well-being of every caregiver who works with your child.

The hypothalamus is part of the limbic system, it controls the body's emotions. It tells the body when to rage and when to calm down. Since this is the area of the brain that is disrupted in PWS, it is not unusual for our children to have difficulty controlling their tempers.

In fact, much like the Incredible Hulk, my mild mannered son can suddenly transform into a growing, green, snarling monster capable of destroying an entire city in a single mindless meltdown. With very little provocation, he can become a chair throwing, word swearing tornado. Hard to believe, I know.

Interestingly however, as quickly as Nicholas erupts, he is equally as capable of calming down in an instant, provided of course that you learn a little magic.

Yesterday morning, I received a call from the nurse at Nick's elementary school, her voice was strained and quiet.

"Hi Mrs Peter's, I have Nicholas in my office. He is complaining of a headache."

Lately, Nicholas has missed a  lot of school. I explained this to Mrs Gilbert and asked if she would please give Nicholas some Tylenol and send him back to class, keeping a watchful eye on his progress, of course.

"OK, I'll try it," she said quickly and hung up the phone. I could not see her expression but I am quite certain she was not the least bit anxious to tell poor Nicholas he would be staying at school.

Sure enough, it wasn't long before the phone rang again. As I picked it up I could hear Nicholas screaming......

"I AM NOT GOING TO TAKE ANY MORE OF THIS SHIT" he wailed and started to cry.

Next, I heard a faint voice.

"Hello....errrr....Mrs. Peters?.......errr.....this is the nurse.....Mrs Gilbert," she said sounding rather defeated and distraught.

I repressed an urge to chuckle, as I have found myself in the exact same predicament more times than I care to remember.

"Mrs. Gilbert," I said strongly, trying to snap her out of the paralyzing fear that was strangling her ability to think straight.

"Here's what you need to do!"

"Go to your medicine cabinet and explain very calmly to Nicholas that I have instructed you to give him the magic medicine. Please emphasize, that this is a very special magic medicine. Tell him I gave you special permission to give it to him. This medicine is only to be used on special occasions for special little boys. Tell him that in just a little while, he will start to feel much much better. Of course, use your regular Children's Tylenol but put it in a paper cup, something that looks different. Give this a try and let me know how it goes."

"OK, I'll try it." She said desperately and quickly hung up the phone.

A few hours passed and surprisingly the phone did not ring.

I decided to give her a call back and check up on Nick's status.

"Hello, Mrs Gilbert, how did it go with Nicholas?"

"Mrs. Peters, she said, I have never seen anything like it. As soon as I told him it was magic medicine, he calmed down immediately. It was like I had flicked a switch. He was so anxious to try the new medicine, he actually smiled as he drank it! Thank you," she said appreciatively.

As I hung up the phone I smiled to myself, realizing I had saved poor Mrs Gilbert with my own form of magic medicine...the powerful drug of distraction.