One word why we don't want a diagnosis - stigma

There are hundreds of stigmas out in the world today.  Are you a felon?  Have you ever filed for bankruptcy?  Some of us can say, no, while others have the unfortunate disgrace that follows them throughout their life from answering yes to those questions. They feel as if they cannot blossom or be given a fair shake in life.  That is generally the exact reason we are apprehensive about diagnosing our special children.  The fear that a stigma will follow them for the rest of their life.  

I remember the moment I saw my son was different.  The delays he showed, the hand flapping, the not crying when he pooped the diaper, the not mimicking my facial expressions, lack of eye contact, extreme sensitivity to almost all his senses, and much more.  As time went on, the signs and symptoms showing he was 'special' progressively increased in intensity.  He would scream when I put certain clothes on him.  He didn't want to participate in games with other children.  Chris was different and as a parent, I had a decision to make.  To have doctors look him over or not.  

On one hand, if I found a doctor to diagnose him, I felt life for Chris was over.  Whatever his diagnosis would be, I knew it was attached to him for life.  Hundreds of questions swirled my brain.  How many doctors would he need?  How many drugs would they put him on?  Would he have to be placed in a facility?  If so, would he care or understand?  Will he be able to ride a bike?  Will he ever be able to drive a car?  Would he ever have a girlfriend or be able to have children?  That lead me to, Oh no, how am I going to talk about the birds and bees to him?  It was even the simple things I questioned, that most of us as parents take for granted.

 I also hated the fact he would be a guinea pig to the pharmaceutical conglomerate.    Being as I had my Core A & B and studied pharmaceuticals for an insurance company, I understood much about drugs.  It was a simple equation.  The more disorders/diseases he had, the more drugs he would be on.  His age/height/weight deemed the dosage throughout his life.  Not to mention the side affects for all drugs should make everyone wince.  Here, you will not have anxiety!  But....you will have anal leakage, thoughts of suicide, uncontrollable outbursts, hypotension/hypertension, and irregular heart-beat.  That's o.k. because you won't care about being in big crowds!  

As if all those things weren't enough, I worried about: insurance, how much for things insurance won't cover, will he bond with his doctors, and school.  Having a child that was ten years older than him and an a-typical child, I worried but not even to the same level as my 'special' son.  

Come to find out, my worries have been given validity.  Other parents saw my child's behavior and questioned my parenting skills.  Some children gave the looks and whispers. You know the ones, that kid is weird.  Even without the diagnosis, people still held their own opinions!  They still formulated ideas in their mind as to "why" my son was "that way".  

To have my son diagnosed was the hardest step being a "parent of a special need child".  I combated the idea more frequently than not.  Once I did, though, a whole new world opened up.  There was now a slew of people to help with my son's issues.  Groups came looking for me to partake in.  Instead of feeling like he had leprosy, he now felt the right kind of "different".  

Don't get me wrong, it has been a battle.  Finding doctors that actually listened to my thoughts and feelings about medication was excruciating.  One therapist diagnosed my son from Autism to Schizophrenia and everything in between.  This brought on a battle all within it's own right.  Some places did not want to provide therapy to Chris because he didn't just have "Autism" as his diagnosis.  It was definitely a conundrum at times.  

Since I was never the type of person to have a stigma attached, the impact weighed greatly on my shoulders for my son.  Reading the 'Scarlet Letter' didn't prepare me  any better or worse for my son's disabilities, and how others would react to them.  Like Hester Prynne, I shut myself and son from the rest of the world.  Once I realized the stigma was there regardless of there being a diagnosis or not, I decided to wear my scarlet letter!  Ever since then, I have wore it proudly and don't care what stone is thrown our way.  

My son has been like a caterpillar.  He hasn't fully bloomed and received his wings.  One thing is for certain.  Once he blossoms into a butterfly, everyone will admire his colors and beauty.  Allowing him to be diagnosed has actually allowed some leniency in the medical, academic, and social world.  The stigma is still there but it is excepted and being understood more and more each day.