Josiah is our fifth child.  Even as a baby, he was very different from the others.  Josiah was content to spend lots of time alone, engrossed in musical, light-up toys.  He rarely demanded much attention.  He didn’t make eye contact.  I remember holding Josiah close, wiggling my fingers quickly back and forth in front of his eyes when he was a baby. He didn’t flinch.  He didn’t blink. He just stared.

He was fascinated with bright lights; transfixed by them really.  as if  hypnotized by the brightness.  I asked his eye doctor about it once.  He had no answers.  He said some of his patients with Down Syndrome were drawn to lights.  But 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 holding Josiah’s 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 said ”out” and “bye”.  He had about 6-8 words.  We would drive to the Cleveland Sight Center every Tuesday morning.  During the hour long 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 this with me initiating a sound and Josiah repeating it almost the entire trip.  I wrote down all the sounds he knew.  It was a long list.

We played the same game with movements.  We called it the ‘copy game’  clap, clap, clap….clap, clap, clap.  pat, pat, pat….pat, pat, pat.  Josiah would imitate each movement..  Every single 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.

Then one day 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 Josiah was 4 he was evaluated for Autism.  After observations and interviews with me and his teachers, the official report from the school psychologist stated Josiah had Autism at home, but not at school.  Autism is pervasive through all environments. It’s not possible to have it in only one environment.

We had him tested a second time with a new psychologist.

I spent hours on the internet, researching.  I printed out many pages of information confirming 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 the behaviors 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’s how they classify those on the spectrum 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 really didn’t change anything.  Josiah didn’t automatically qualify for additional services.  It didn’t bring extra benefits with the additional label.  I’m not sure why it was so important to know for sure.  It just 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.

That’s good enough for me.