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.




Monday, October 25, 2010

An Executive Parent

Before both of my children were born, I was a sales executive in the medical device industry. I traveled around the country selling plastic tubing to engineers who designed medical devices like feeding tubes and IV catheters. I had nothing to worry about except me and my job.

This position required that I posses many technical and professional skills. I gave sales presentations. I participated in industry trade shows. I advised engineers on material management. I worked with in-house support personnel to solve customer problems.

The position required an ability to understand complex issues and terms.  It required an ability to negotiate with a wide variety of personalities, like engineers, purchasing agents, quality control technicians as well as manufacturers.

It was a tough job and it paid well with lots of perks like bonuses and commissions, job training programs, extra vacation time and stock options.

I didn't know how good I had it.

I didn't know that it was preparing me for what was to come...the most difficult job I would ever hold.

When you are the parent of a child with special needs the list of job requirements and necessary skills that must accompany this position is overwhelming.....to say the least.

I must be able to talk intelligently with a variety of personalities, like doctors, specialists, teachers, therapists, principals and special needs directors.

I must be a good negotiator since many of these individuals are directly responsible for the quality of life of my child.

I must be adept at burying my emotions. Emotions that reside precariously just under my skin, ready to erupt at a moments notice. These volatile emotions must be buried so that I can stay strong for my child. I bury these feelings so that I can negotiate and discuss critical issues rationally. This is a necessary skill so that professionals working with my child will understand all that is imperative to diagnosing and treating my children.

I must understand complex medical terms and issues.

I must learn how to use medical equipment like feeding tubes, standers and gait trainers.

I must understand the laws like, No Child Left Behind and Rights to Privacy.

I must fill out forms and understand the complex process of applying for medical assistance to cover the escalating costs of services and medications for my children.

I must deal with state employees who are indifferent.

I must coordinate and manage a schedule of hundreds of appointments.

I must direct IEP meetings so that my son gets all of the services and supports he is qualified to receive at school.

I must be intelligent, articulate, calm, confident, cooperative, proactive, and fearless.

I must be an Executive Parent.

Of course there is no training that accompanies this new position. No payment, no bonuses, no vacation time.....no break.....ever! No one ever tells you what a wonderful job you are doing. There are no reviews, no promotions, no raises. You don't qualify for parent of the month awards. Oh yeah, and the most important thing...you can never, ever quit......ever.

The only reward you do get is to remember the simple fact that the better the Executive Parent I become....the better the lives of my beautiful children.


It is a motivator like no other.




Although I still think a bonus and a vacation would be nice.