Josiah's Journey

Having had 4 children prior to Josiah, I was familiar with the stages of childhood development.  So it was surprising to me that as a very young child Josiah was content to spend large quantities of time alone, engrossed in toys that would light up and play music.  It just didn't seem right that he did not seek my attention.  I was also concerned about his lack of eye contact.  I remember holding him close and wiggling my fingers quickly back and forth in front of his eyes.  Nothing.  He didn't flinch.  He didn't blink. He just stared.

He was also fascinated with bright lights.  No problem finding those.  He was transfixed by light sources.  It was as if he were hypnotized by brightness.  I asked his eye doctor why.  He didn't know.  He said some of his patients with Down Syndrome were drawn to lights.  He had noticed that.  But it was only a small percentage of them.

There were other concerns.  I noticed children with Down Syndrome from our playgroup engaging a bit with each other.  Josiah kept to himself.  I remember a little girl using Josiahs shoulders to pull herself up while he was sitting on the floor.  She held on to him and banged a couple of times on his head.  He never moved.  Didn't phase him in the least.

I started asking questions.  I asked his pediatrician.  I asked his therapists.  I asked friends.  "Do you think Josiah has Autism?"  Everyone said no.  Every concern was explained away.  "He's very social.  Kids with Autism aren't"  "He lets me get close to him.  Kids with Autism would never do that."  "He doesn't mind when I touch him.  Kids with Autism are bothered by touch."  "Josiah does not have Autism." 

I wasn't so sure.  When he was around 18 months I remember words.  Josiah said, "mama and dada".  He said "meow" and "up".  He had about 6-8 words.  We would drive to the Cleveland Sight Center every Tuesday morning.  It was an hours drive.  We would play a game.  "baa baa baa" I would say.  "baa baa baa" Josiah would reply. "g, g, g", "g,g,g"  "ha, ha, ha", "ha, ha, ha".  It continued like his with me initiating a sound and Josiah repeating it almost the entire trip.  I wrote down all the sounds he knew.  I remember a long list. 

I tried it with movements.  We called it the 'copy game'  clap, clap, clap....clap, clap, clap.  pat, pat, pat....pat, pat, pat.  Josiah would imitate the movements.  Every time.  He loved this game.  Chandler used to love to play it with him.  We all played it with him at one time or another.

It wasn't long before Josiah wouldn't play the copy game anymore.  It wasn't long before the sounds stopped.  All too quickly the words ended as well.  Josiah simply became silent.  I knew then, something more was going on with my son.

When he was 4 he was evaluated for Autism.  After home and school visits, observations and interviews with me and his teachers, the official report from the school psychologist stated Josiah had Autism at home, not at school.  Interesting.  Autism is pervasive through all environments.

We had him tested a second time.  New psychologist.  I spent hours on the internet, researching.  I printed out many pages of information acknowledging that children with Down Syndrome can have Autism.  It's overlooked often times because many behaviors are similar with both populations.  I highlighted key points in the articles.  I checked off behaviors listed that Josiah exhibited.  I wrote notes in the margins.  Josiah does this.  Josiah does that.  I met with the psychologist and explained my concerns.

Second diagnosis.  Josiah has PDD-NOS, Pervasive Developmental Disorder-Not Otherwise Specified. Simply stated, it is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. It can include difficulty socializing with others, repetitive behaviors, heightened sensitivities to certain stimuli and communication problems.

I always thought there was something more.  It helped to know for sure.  It didn't change anything.  Not really.  Josiah didn't automatically qualify for any additional services.  It didn't bring any benefits having an additional label.  I'm not sure why it was so important to know for sure.  But it was.

Josiah has Down Syndrome and PDD-NOS.  I have glaucoma and hypothryroidism.  So what.  Doesn't really matter.  Labels don't make a difference.  He's just my little boy. 

And that's good enough for me.