Not Otherwise Specified

I’m the “why” girl.

I gotta know the reason.

I once took a trigonometry course (don’t ask me what I was thinking!) that I ended up dropping.  I was getting an “A” but no one could tell me why I was doing what I was doing.

If I don’t understand I don’t move forward.

Don’t get me wrong.  I can move forward based on faith and trust.  However when it’s possible to give the concrete I need it.  I crave it.  I must have it.

I took time tonight to talk at length with Eli’s psychologist in anticipation of the upcoming school meeting next week.  We talked about his progress over the last month.  We talked about his needs.  We talked about what to do next.  Then we talked diagnosis.

My heart skipped a beat when she said that she doesn’t feel he has Anxiety Disorder.  Yes, he has worries.  No, it’s not a disorder that disables him.  She’s billing insurance under the code of Anxiety-NOS because that’s what they usually pay for.

Ok, if not anxiety, then what?  She agreed with a prior discussion we had that he’s Aspergerish, but not Asperger’s.  He’s not Autism.  He’s certainly sensory and has some other “spectrum” types of concerns.  So what?  Yep, you guessed it.

Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)

And there it is.  Our first Spectrum diagnosis.

I took it better than I thought I would.  I suppose that’s partially because she didn’t know if that’s where he really fit either.  She seemed to feel that his sensory concerns were the root of most of his concerns.  But, because of the anxiety and the resistance to change she felt she needed to go one step further.  She also wanted to make sure that we had something tangible for the school to be able to use.

So, we’ve joined the masses.  Parents like us who don’t really have answers to the “why”.  A diagnosis that doesn’t tell us much more than we already knew about our child.  A diagnosis that lumps us in with the Autism folks, but we don’t really fit there.  Much like our children, we don’t really fit anywhere neatly.

So, today we put our best foot forward and move into this new world that will hopefully see Eli getting the supports that he needs to succeed.

I truly enjoyed our drive home from the psychologist’s office today.  Eli told me that his best parts of today were being with me and seeing his worry doctor.  How can a mommy be upset about anything when these are the beautiful words she gets to hear?!?!


About Brotherly Love

I am a mom, partner, teacher and a lover of life. I have two fabulous boys who define my life as I know it. One of my children has been diagnosed with a sensory processing disorder, Asperger's and anxiety disorder. I blog as much about him as I do about my life and the lives of my immediate family.
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10 Responses to Not Otherwise Specified

  1. Elastamom says:

    That is so difficult to have a diagnosis that’s not a diagnosis. I’m sorry but I’m glad you’re handling it well. Eli is just Eli!!

  2. akbutler says:

    I have been in your shoes. I am in your shoes.
    The PDD-NOS diagnosis is a frustrating one (which is probably why they are proposing it go away in the next DSM). It’s broad and doesn’t tell the whole story. It’s my son’s diagnosis too. In my head, I only think of that diagnosis for school/insurance purposes. It didn’t change who my son was. But it did change what services he was eligible for.
    It’s not an easy thing to hear, there’s no doubt about that. But Eli is Eli (as said above) and no label makes that change at all.

  3. Mrs.Mayhem says:

    I imagine PDD-NOS was a difficult diagnosis to hear. And I’m sure it must be so frustrating to have no concrete answers.

    In the early days of a diagnosis, it ca be overwhelming to feel that you will find your path through the maze of needs and services. But you will. You have obviously been a very caring and proactive mother. You will continue to do whatever needs to be done to help Eli.

  4. Kate Schwartz says:

    So not easy but remember you are not alone. As hard as this is, you have people that will help and support you! Some great advice Tim once gave me, you have to take care of yourself !!, keep your relationship strong and make time effort for date night!!!

    From a Mom that has been a search for awhile, no staying up till 3 or 4 in the morning sending out emails full of questions!!!! Good advice from yourself to me once upon a time.

    It is a DX that feels like a non DX but remember that he is Eli and no matter what a DX does not change that. It just allows him to get more supports for what he and his body needs! Remember the pink with purple polka dots! Does not matter what “they call it” as long as those involved help you and Jane help Eli.

    Wishing you PEACE through the journey!

  5. Patty says:

    Though my son was diagnosed with high functioning autism this past year, I think I know how you feel. For years, we felt like we were in limbo. Definitely there was SPD and some autism-type behaviors, but he doesn’t really fit very well into any one category. He did get a diagnosis, finally, but even the dr. said that if he improves in just one area, he’d lose the autism dx and I assume would be categorized as PDD-NOS. I like how you put it that you don’t know very much more after the dx than you did before. I felt the same way.

    In fact, a year later, I still feel that way. The doctors can only give so many answers, and that frustrates me too. I’m like you: I want answers, but answers are hard to come by in this “special needs/autism/PDD-NOS” world. Good luck!

    • Patty, that’s exactly what I’m going through. We got the diagnosis more to get him help than anything else. It’s just frustrating to know that there’s something going on and no one can tell me why.

  6. Debbi Henry says:

    Hugs to you Heather!!

    I know how you feel! When we were told about Gracie’s chromosome disorder they were not able to give us much information. They have never seen this before and have no other kids to compare Gracie to or to give us any expectations.

    As for why…we’ll never know. That is hard!

    Hopefully this will help you in the fight for getting Eli the services that he needs!


  7. Jaimee says:

    Eli sounds so much like my own son. He is now medicated for anxiety, has SPD, and even though the evaluation ruled out Asperger’s, the psychologist said he “had one foot on the spectrum.” Apparently not enough to get a PDD diagnosis, but several of the symptoms are still there. I was hoping our son’s evaluation would be more definitive….maybe it’s good that it wasn’t. I don’t know. Crazy that all these kids are so alike and yet it’s just pieces of this and that.

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