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.




Wednesday, September 10, 2014

Pillow Talk

There is never a dull moment when you live with a child diagnosed with PWS.

In fact sometimes, it can be downright funny.

"Perseveration" is another word I learned thanks to Nicholas.

This is a constant repetition of thought, speech or action. It's like taking OCD and kicking it up a notch, a result of the malfunctioning hypothalamus in the brain. This repetition, seems at least to me, to be a kind of security blanket for Nicholas. It is a high fence he uses to calm down when his anxiety starts to escalate. He also uses it as a tool to combat boredom.

Our story begins in our living room where Nicholas enjoys spending much of his time, especially since it is the location of two of his most favorite things in the world. This:


and this......



 But even these soothing sight and sound devices loose their appeal after awhile...especially when it is four in the morning and you are the only one awake in the house.

Early morning rising is another symptom of PWS. Circadian rhythm or the sleep/wake cycle is also controlled by the hypothalamus and disturbed in individuals diagnosed with PWS.....amazing what this small portion of the brain controls isn't it?

As a result, Nick's sleep schedule is out-of-whack. He will often fall fast asleep by 7 pm only to awaken at about 3:30 - 4:00 each morning. (I think he is also roused out of his sleep by hunger and uncontrollable thoughts of food and breakfast).

Now, recently the Peters' family purchased some new living room furniture. With it came some nice accessories, specifically these lovely pillow....


Nice, right?

Well unfortunately, these plump, puffy pillows are filled with feathers, lots and lots of feathers. Feathers with ends like needles. These sharp, needle-like ends have a habit of sticking out of the fabric becoming an irresistible target for a perseverating boy hell bent on relieving boredom.

So, perhaps I should not be surprised to wake up in the morning only to see my living room looking more like the floor of a bustling hen house?


Reminding me of an episode of Road Runner with Wile E Coyote in hot pursuit of his favorite prey.



Of course, Nick's headphones are a dead give-away as to the exact identity of this mysterious feather fiend of the house.

But in true Nicholas fashion, when I confront him gently about what appears to be a puffy pillow massacre on the floor of my living room, he promptly blames it on his favorite fall guy..........Mok.

 
A perfect companion for these kind of episodes.
 
To read more about this invisible rascal and now puffy pillow pilferer, click here.