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 21, 2013

Band aids, Bubble Wrap and Prader Willi Syndrome

Besides an insatiable appetite, children diagnosed with PWS also suffer from issues related to OCD (obsessive/compulsive disorder). They will engage in the same activity or speech pattern again and again.

Skin picking is a form of OCD behavior and many of our children suffer from this compulsion. It can become so severe, that hair, eyebrows, toes and fingernails are pulled from the body. Scratches, cuts and open wounds are particularly susceptible to skin-picking issues. Since many of our children also experience a diminished pain sensation, these wounds can become severely infected, threatening the good health of our children.

For our son Nicholas, fingers are his primary target. He has many spots on his hands where he has peeled skin, causing his fingers to bleed. So far, we have managed to control this behavior by covering his wounds with band-aids, lots and lots of band-aids. We have used so many of these plastic dressings, I am considering buying stock in Johnson and Johnson.

 I believe for Nicholas, the band aids are a helpful release from his obsession since I have found a few of his furry friends wearing similar flesh-colored accessories.

Reminding Nicholas to "stop picking" is like adding fuel to a roaring fire. It does nothing but increase his anxiety about his obsession. This increase in anxiety further escalates the unwanted behavior.

He has explained,

"Mom I know I shouldn't pick at my fingers but I can't help it. My brain keeps telling me to do it."

I believe these obsessive activities are in some way soothing to Nicholas, helping him to stay focused and alert. It is a calming mechanism he uses to stimulate his brain and alleviate anxiety.

So, what is a parent to do?

Some PWS parents have had success using a product called PharmaNAC. This is a product available for order on Amazon without a prescription. Click here to purchase. It comes in 900 mg effervescent tablets that dissolve in water (like Alka Seltzer). Taken once a day, these fruit-flavored tablets help many of our children to stop picking. For some, it is quite a miraculous supplement.

For Nicholas, it has fallen short of its promise, mostly because he hates the taste of the fruit-flavored drink and refuses to drink it, which is practically unheard of....in a child diagnosed with PWS. I have dissolved the tablets in every drink imaginable and still he will not drink it.

So alas, we have employed other techniques in an effort to keep his hands busy.

One of his favorite activities is peeling the paper covers off his crayons. Unfortunately, this activity creates tiny piles of wrapper shavings that litter the living room floor. Crayons sans wrappers also have a mysterious way of collecting inside Muffy's crate and other unmentionable places. Let's just say Muffy droppings become much more colorful when Nicholas begins to peel crayons.

who me?

So, we have directed Nick's restless hands to other activities like stringing beads, painting, coloring and something he discovered on his own, the zipping and unzipping of his many backpacks.

If you are the parent of a child diagnosed with PWS, the greatest skill you will ever develop (besides your ability to distract), will be your ability to solve difficult problems and implement unusual solutions.

Over the past few months I have been challenged to think of more creative ways to keep Nick's hands occupied. Yesterday, I opened his monthly GH (growth hormone) shipment. Inside the package was a large swath of bubble wrap.

I wonder???........I thought to myself.

I handed my son the large sheet of bubbles.

"What's this Mummy?" he asked.

"Well," I explained, "Do you see these bubbles?"

"I see them," he answered.

"You poke them until they pop.....like this," I said and snapped one of the bubbles.

Nick's eyes grew bigger as he pulled the sheet towards him and started to poke. He laughed delightedly as he poked the rows and rows of clear plastic bubbles.

Perhaps I found the solution to Nick's obsession? And since Nicholas suffers from fine motor difficulties as a result of his low muscle tone, this activity may also help to strengthen this weakness.

But I had forgotten all about this latest bubble brain storm until this morning. I was making coffee in the kitchen while Nicholas played quietly in the living room before school.

I noticed, quite suddenly, that the living room had become silent. My Super Mummy Senses sprang to a heightened level of alert since it is usually this kind of quiet that accompanies a compulsive session of finger picking. I walked quietly toward the room and stopped. A subtle noise began to fill the room, it was the all-too-familiar sound of


Nicholas was playing with his bubble wrap.


I breathed a sigh of relief, thankful for the reprieve from the sight of bloody fingers.

I must admit, I had to repress my own OCD-like tendencies as I was tempted to join him in his bubble-popping frenzy.

There's just something about snapping those bubbles.

I now have a new problem to add to my growing list.....

Where can I buy a giant roll of cheap bubble wrap?

I guess it's either band aids or bubble wrap to the rescue.

Either way, perhaps it would be wise for me to invest in both of these companies?