E-Niner has PDD-NOS, a disorder on the autism spectrum. I’ve always dismissed this particular diagnosis. He meets the criteria because he isn’t great at eye contact, does lots of repetitive behaviors and weird vocalizations.

I’ve always attributed those characteristics to anxiety or sensory processing disorder (also on the autism spectrum), but have not really wanted to fully accept PDD-NOS as a diagnosis. Plus, PDD-NOS stands for Pervasive Developmental Delay – Not Otherwise Specified. Considering this kid’s cognitive abilities are above average, I have trouble that his delays are pervasive.

Then I took the test that wrongshoes linked to on her blog.

E-Niner pulled up a high score, indicating that he has severe PDD-NOS. And here I was, dismissing it this whole time. The result showed, boldly, “Severe.”

That PDD-NOS pill I’ve tried so hard not to swallow? It’s materialized as a big lump in my throat, and I’m still trying to push it down.

Everything about E-Niner is severe. Severe ADHD, severe anxiety, even psychosis rolls right off my tongue. Why, after all we’ve been through with him, would severe PDD-NOS bother me?

In the early days of learning about E-Niner’s issues, we always patted ourselves on the back. At least he didn’t have autism or some form of it. All those parents raising all those kids with Autism — that’s the worst. You do so much work for the benefit of your child, and they can’t even show that they love you.

Isn’t love the one thing that mothers — that parents — crave?

To hear your child say I love you sounds like a song. To feel your child wrap his arms tightly around you, to feel him twirl your hair, to feel his tiny hands hold your face as he stares into your eyes (yes, I’m totally thinking of T783 right now!) — this is the stuff that makes the rough moments and all the work that goes into parenting worth it. It’s the “drug” that gives you that parent high.

E-Niner doesn’t hug me. He won’t let me hug him. He will let me kiss him — either when he’s fully medicated during the day or in the evening right before he goes to bed. But I have to kiss him on the forehead, it has to be quick, and he has to wipe it off. He’s never kissed me proactively, and when you’re forcing someone to purse your lips, it’s not the same.

E-Niner doesn’t sit on my lap. I recall a mom-and-tot music class we attended when he was two. The kids had to sit on their parents legs as we bounced them like a “horsey.” He didn’t want to do it. I looked around the room, and all the other kids were doing it. Not E-Niner. He had run away from me, off to explore other parts of the room. I dismissed it then — and even now — that he’s “all boy.” Boys generally aren’t that affectionate.

Okay, Okay, I know. Can we say denial?

I’ve spent a lot of time in denial about the whole PDD idea for many years, since his neurologist first introduced the idea back when E-Niner was two and a half. I may still be fully in denial right now.

Every time I get an Autism Speaks e-mail, I hit delete. “Doesn’t apply to me!” Yet. Yet I remain on the list. Yet, I ordered their welcome package and thought it was extraordinarily useful. Yet, every time I see a video on that site or I read messages on their discussion forum, I can totally relate.

But my kid doesn’t have Autism or any form of it. My kid? Nope. He’s got other things. Not that. Not that really bad disorder that makes it difficult to show that he loves me. He doesn’t have that, because that would suck.

But even if he does…even if I can get this pill down…in spite of whether he has PDD-NOS…and finally getting to the point of this post, guess what happened yesterday? Twice — twice — he sat in my lap for a long time (at least a minute and once, five)!

It felt so good, I had forgotten what I’ve been missing. He allowed me to cradle his hot, sad body in my arms. He allowed me to hold him until he felt better. He came to me for comfort! In the history of E-Niner, I can’t tell you the last time that has happened. It was heaven.

I informed absolutely no one that I would have a phone call this afternoon with the National Institutes of Health regarding what’s been going on with E-Niner. I didn’t know if anything would come of it or not. It was a memorable call and probably one of the most efficiently attained helpful bits of information I’ve received about E-Niner.

In a nutshell, the social worker at NIH said that psychosis and PDD-NOS sometimes occur simultaneously. What’s unique about psychosis in conjunction with PDD-NOS is that the psychosis is focused on a child’s interest — as E-Niner does with WALL-E or Lightening McQueen or any number of other Disney characters up his sleeve.

So that was comforting to hear. Why didn’t I know that before? Why didn’t anybody ever tell me that? Maybe not that many people know.

After going through E-Niner’s history, her prognosis was that E-Niner will either grow into the PDD-NOS diagnosis, bipolar disorder or schizophrenia. She said that schizophrenia can occur with or without PDD-NOS and with or without bipolar disorder, so one doesn’t rule out the other.

I asked her at what age she thought these things would come together and we would have a better idea of what was going on. She gave me that therapeutic caveat of “we really can’t predict the future or make any guarantees,” but she guessed around age seven. That’s two more years.

She was most interested in his genetic abnormality and requested that I forward his neurological work-up and the results of the genetic testing we’ve done. She thought the NIH geneticists would be interested in that.

So that’s where we are. I’ve got to say that it feels so good to finally have somebody have the balls to give me prediction on where they think things are headed. I can’t emphasize how comforting it feels to have some sort of road map — directional – on the trajectory of things.

Almost every other therapist we’ve seen has told me that we have to live in the moment and deal with where E-Niner is right now, and that’s all well and good. But to live solely in the moment and not have any idea of the future is not always easy. At least not for me.

The prediction doesn’t make the road any easier or gives us any answers, but it opens up a path thick with brush that I had been previously working on by hand with a machete.