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.

Sunday, January 4, 2015

Extreme Parenting

When you become the parent of a child diagnosed with special needs you enter a world of...

Extreme Parenting

Life for 'typical' families is fairly predictable. It is a series of casual ups and downs. But for the most part, it has a calm and consistent flow as it travels around and around.

If you are a family raising a child with complex medical needs, the flow of life is constantly disrupted, it is turbulent and extreme. It moves fast in every direction, up, down and all around. Abrupt and constant medical/behavioral crisis can make life feel like you're a passenger on this:

experiencing a series of high, highs
followed quickly by low, lows
making you feel you're sitting on this:
and wanting to scream like this:

For a special needs parent, these sudden extremes of feeling can create a type of emotional whiplash, a feeling of being thrown violently forward, backward and side to side.
Manifesting physically as feelings of despair, restlessness, sadness, fear and fatigue. If you are a follower of my blog, you may have noticed the roller coaster ride of emotions I feel on a daily and weekly basis.

Maintaining sanity during these emotional extremes is challenging. It requires just as much work to care for myself as it does caring for my children. But how do I incorporate rest, relaxation and peace into a lifestyle filled with so much crisis and chaos?

The answer is...it's difficult.

"It's difficult" ...... is the mantra of my life.

But I guess it only makes sense that if the balance (of my roller coaster life) is tipped further into the difficult category, then the energy necessary to bring the scale back to a peaceful position must be greater.

I am sure Einstein has a formula for this? Maybe something like this?

So, I need to create energy.....lots and lots of energy.

For me, that energy is in the form of releasing emotion.

It's important to understand that healthy release of emotion is expressed differently in different individuals.

For me, it's all about expression.....I talk, or write a lot. I express outwardly.

For my husband, it's all about contemplation. ...he thinks and resolves inwardly. He is quiet.

But what is the same for both of us, is the need for healthy distractions.

This can be hobbies, exercise, meditation, and most importantly fun and time away.

But what is perhaps MOST important is developing not only an ability to express, but an ability to accept and let go. Feel the sadness, anger, regret and pain but release it quickly so it does not have an ability to fester.

The speed of a chaotic life demands an equal speed of "letting go" energy.

A kind of fast motion emotion...a need to begin living in the moment.

It is hard work processing emotions.

In fact it looks a lot like a scale that tips repeatedly back and forth, and back and forth until eventually,

balance is achieved
for a moment.

until it is time for the next extreme