Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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, April 28, 2011

Invisible Heroes

“I think heroes are people who do good or necessary things at great personal cost. Heroism must be judged by the courage and grit required to do what needs doing.”

Sound familiar to any of you?

These are the opening lines of the book Invisible Heroes by Belleruth Naparstek but the words could also best describe a parent of a child diagnosed with special needs.

From time to time, I stumble across great finds, tools that actually help me in my journey to raise my children. This book is one of those rare treasures.

I wanted to share it with all of you.

In her book, Invisible Heroes, Belleruth Naparstek talks about trauma, what it is and how it can affect us.

When my son Nicholas was born with Prader Willi Syndrome, I never realize that the difficult experience of his birth, the loss of a dream and the overwhelming fear of the future, had caused me to experience a deep and devastating form of trauma. I never realized how living day-to-day caring for my children with special needs had created a kind of constant traumatic lifestyle. I never realized the negative effect this stressed way of living had on my body, my mind, and my precious spirit.

I never realized, that like all of you, I had become an invisible hero.

In her book, Belleruth Naparstek explains how “overwhelming trauma creates such daunting fear and heart-stopping distress that it produces legions of heroes whose every day is a test of their mettle, commitment and courage.”

The author explains that the normal way of dealing with trauma is to talk about it. But because of the unusual way traumatic experiences are stored in the brain, traditional talk therapies may actually make symptoms worse, potentially causing flash backs, anxiety, depression, panic attacks and more.

I often wondered why from time to time I would feel this way, particularly after talking about the birth of my son.

She talks about the emotional aspects of trauma…immeasurable sorrow, deep grief, rage, numbness, shame and humiliation, loneliness, alienation, despair, helplessness, guilt, blame, regret, a heart ripped open, all of which I have experienced.

She talks about the behavioral aspects of trauma…isolation, disrupted relationships, over-control, avoidance of intimacy, substance abuse, addictive behavior, learned helplessness and my personal favorite, compulsive busyness.

She also talks surprisingly about some of the gifts in the rubble….like joy, compassion, heightened creativity, survivor power and spiritual connection. These gifts I also feel from time to time.

She recommends a type of relaxation technique that uses “guided imagery”…..using pleasant visual images and thoughts to replace the upsetting ones.

These imagery-based solutions use the right hemisphere of the brain-perception, sensation, emotion and movement-rather than the left side’s standard cognitive functions of thinking, analyzing verbalizing and synthesizing…Trauma produces changes in the brain that impede a person’s ability to think and talk about the event …Imagery uses what’s most accessible in the traumatized brain to help with the healing.”

She uses these tools as an exercise in helping to heal hurt hearts.

It is an interesting concept. The information she provides about dealing with trauma has been extremely valuable to me. The book is easy to read and full of valuable insights and tools.

The lifestyle of a parent of a child with special needs is filled with continuous heart-stopping trauma. There are EEG’s and surgical procedures, behavioral challenges and therapy sessions and of course the added stress of constantly advocating for our children.

 My good health is vital to the needs of my precious children so that I may care appropriately for them for the rest of my life. I have discovered lately that my overall well-being is directly proportional to how competent I am at diffusing the trauma I experience on a daily basis.

Invisible Heroes has helped me to realize that since I am so willing to try anything to help heal my children, perhaps I should consider doing the same for myself.

Every now and then I will get a good case of the PWB’s (Prader Willi Blues). These are times when I obsess about the syndrome. I obsess about fixing my child. I feel like I lose control over everything and spiral into a black fog-like depression. I withdraw from my family, my friends and the world. It is an overwhelming darkness that challenges my ability just to get out of bed in the morning.

In an effort to dispel the Prader Willi demons, I have tried creating my own “secret garden” in my mind. It is my own empowering version of  Belleruth’s “guided imagery”.

See my previous post titled: My Secret Garden.

You can view the full post today at http://www.hopefulparents.org/

1 comment:

The Henrys said...

This book sounds amazing, and everything you wrote it soooo true! I can identify with all of it.

I vividy remember your secret garden post and how much I loved hearing about your imagined garden. I must admit that I have been trying to have a place like that to think about when I have trouble sleeping.

I think I need to get this book...thanks for telling us about it!

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