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.
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.