Josiah's Journey

It's been said that Josiah is an enigma.

The dictionary describes it this way: One that is puzzling, ambiguous, inexplicable and mysterious.

Interesting way to describe a child.   

Early on, when Josiah didn't fit the mold of a 'typical' child with Down Syndrome, we just knew beyond a shadow of a doubt that something more was going on with him.  

We mentioned it countless times to specialists and therapists and physicians.  Everyone disagreed.

They said, if Josiah had Autism he wouldn't be so affectionate.  If he had Autism he wouldn't let me get this close to him.  If he had Autism he wouldn't give eye contact at all.

We were told things like: Every child with Down Syndrome is different.  He's just very low functioning.  Why would you WANT your child to have a diagnosis of Autism anyway?  

I've shared before that we even had a psychologist tell us after testing Josiah and observing him in different environments that he had Autism at home, but not at school.

I won't elaborate on how ludicrous that comment was.  But, guess what?  All of us sitting at the table during that ARD meeting, agreed.  We all signed the paper saying her findings were accurate.

Warning bells were going off in my head.  I KNEW it made no sense.  Autism is pervasive in all environments.   Josiah did not have Autism ONLY at home.

I'm ashamed to admit I didn't stop it.  I'm sorry I didn't speak up and say something, anything to let them know I did NOT agree.

I simply sat there and signed the paper.  

When I got home and came to my senses, I made some calls.  I expressed my concerns with the findings.  I requested another psychologist.

The short story of it is that Josiah was reevaluated.  

I spent countless hours on the internet reading, researching and learning everything I could about dual diagnoses.  

Yes, there are many similarities between children with Down Syndrome and children with Autism.  But they are many differences as well.

Josiah was different.  I knew that.  I knew from spending time around lots of other children with Down Syndrome that he was not like them, except in his appearance.

I printed out articles and highlighted them.  I marked off checklists with symptoms of Autism that Josiah possessed.

I met with the psychologist who was doing the 2nd evaluation.  I shared my information with her.  I explained that if Josiah did not have Autism then I wanted to know what he did have that made him so different from kids with Down Syndrome.

Why was he exhibiting all these different behaviors?

In the end, Josiah was diagnosed with PDD-NOS,  Pervasive Developmental Disoder-Not Otherwise Specified.

What it means is that he exhibited some of the symptoms of Autism, but not all of them.

This psychologist confided in me that had it not been for the research I showed her, she may not have given Josiah the PDD-NOS label.

She had never met a child like him and didn't quite understand what was going on with him initially. 

Her exact words to me were, Your son is an enigma.  

I'll never forget that.

But, after many years of thinking about it, here is how I choose to interpret what she meant.

You have an amazing son.  Josiah has unique abilities that we don't even fully grasp or understand at this point.  God has a great plan and purpose for this child.  

You will learn a lot from him.  You will be different for having him in your life.  He will draw you closer to God.  

He will bring you great joy.  Your life will never be the same.  

You will learn from him and use what you learn to encourage others.  You will tell the world about him.  

Not such a mystery after all.