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.




Friday, October 11, 2013

PWB's and the Laws of Special Needs Parenting


PWB's is what I call, the Prader Willi Blues.

This is a period of "the blues" that hits me immediately after a Nicholas hospitalization or emergency room visit. It is the emotional fall-out that occurs after the procedure is over.

During a stressful Nicholas event, I "hold it together" and suppress my emotion so that I may help my son to withstand a difficult medical procedure. But when it is over, the PWB's usually hit with a vengeance, sending my soul into a type of post traumatic stress depression.

For the next few days, it is as if my body needs to expel all those restrained and uncontrollable emotions. I am angry, sad, and tired. I snap at friends and family members. I feel isolated from the world. My body feels as if it is in slow-motion as I begin to purge the swirling mixture of stressful feelings from my body and soul.

For some reason, Nick's latest visit to the hospital really did a number on me. I spoke to Pete about my difficulty, this time, in calming my emotions. He explained that he too was struggling. So often, I forget that he accompanies me on this emotional roller coaster ride from hell.

I have discovered that much like Newton's Laws of Gravity or Einstein's Laws of Relativity, special needs parents also have an important set of laws to learn.

I am naming them:

Lisa's Laws of Special Needs Parenting.

The first and most important law is this:

A body's need for "self preservation" is directly proportional to a body's skill at "diffusion of emotion"

I must take the time to schedule "fun" into our hectic schedule.

It is a necessity to my mental and physical health.

If I do not learn this skill, I suffer and begin to lose myself.

I need to learn how to become a woman of leisure.

So in an effort to learn how to relax and have some fun, I have scheduled a date night tonight for me and hubby, perhaps dinner and another scary movie?

And for the family....I have made our Thanksgiving adventure plans......

I will give you a hint.



Any idea?
What laws have you learned?