hugs.

2009 February 6
by cms8741

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.

6 Responses leave one →
  1. 2009 February 6

    I like the build-up to the big news. Go, little E-Niner and show your momma your love! It’s weird what sort of perspective we mothers of special needs kids have, what scares us and what we’re used to. I remember thinking, “at least she doesn’t have autism,” when my daughter was diagnosed. But tens of thousands of seizures later, I’m not sure it was preferable! I think the good thing to remember is that we’re all connected in some way through our special needs kids, whatever their disability and our perception of it.

  2. 2009 February 6

    Yay, E!! Wow, sometimes I really take for granted my “normal” situation.

    FYI, I’ve been talking to a couple ladies at work who are part of our staffing team because I’m starting to think that Twin Boy definitely falls somewhere on the autism spectrum. I tried to take the assessment that you linked above, but many of those things can only be assessed by a parent. I’m afraid there’s no way to get his parents to do the assessment, even if I were to print out the questions. I’m fairly certain mom in illiterate. I know she does the best she can, but it’s really just not enough. In the very first week of school, I had asked if her pediatrician has ever mentioned anything to her about Twin Boys “issues.” Of course she said no, but it later occurred to me that she most likely doesn’t have a pediatrician!! I’m sure she takes her kids to the free clinic, and only when it’s absolutely necessary. Again, I totally take my situation for granted sometimes. Oh, how I wish there was more I could do… :(

  3. 2009 February 6
    christina g permalink

    I can absolutely understand what you are saying. I’m here if you have questions. The hardest part is getting past the diagnosis and going on with the challenge of learning how to help him best. You’ve been on such a roller coaster ride, it may even be a relief to have a diagnosis that has a “game plan”…..

  4. 2009 February 6

    Did you read John Elder Robison’s latest post on diagnosis? It gave me a new perspective.

    I’m so glad he sat in your lap!

    Taz used to never sit in my lap, but now he does. He also says I love you a lot lately. He still won’t let me kiss him.

  5. 2009 February 7
    jen permalink

    Sigh. They don’t warn you about this crap, do they? I know what you mean about not wanting to look the autism spectrum in the face. I *know* SPD is on the higher end of the spectrum, but I have to make myself forget that. I tell myself it’s just sensory issues, nothing more. A is affectionate, not as much as his brother, but still.
    I’m so glad E-Niner sat with you. Baby steps, babe. Perhaps once you’re comfortable with the dx, it’ll get easier. I don’t know. :(

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