PDD-NOS maybe :/ — The Bump
Special Needs

PDD-NOS maybe :/

Well DS passed his hearing test with flying colors and tubes are open. Met with EI tonight and she said we should go to the next step of having DS meet with a neuropsychologist, as well as sign up for an IEP eval at some special public pre-school that works on a "8 peers" and 7 "special ed" students ratio.

 The main syndrome DS is showing is the inability to focus in a classroom setting. His language skills are better, but he gets "lost" when he's around a lot of activity and people. At home he acts deaf sometimes.

I'm just wondering if EI is making these recommendations is there still hope that DS is just delayed and will catch up and not have any issues?  We are so new to all this. They said the wait to see the neuro could be up to 2 months. That's a long time to be worrying!

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Re: PDD-NOS maybe :/

  • finsupfinsup member
    Long-Lasting Membership 100 Comments 25 Love Its Combo Breaker

    Yes, there is hope.  LOTS of hope. 

    My DS sounds similar - in a smaller group, or even in a bigger group of familiar kids he does fine.  Put him in a chaotic situation where its loud and crazy and he either finds a corner to play with cars by himself, or gets overly loud and crazy too. 

    But he's made tons of progress over the last 2 years in the special ed preschool and he continues to make progress every day.  There more we learn aout what "works" for him, the faster he progresses.

    This may be something that your guy always has to work a little harder at, or it may be part of a larger issue, either way it sounds like you have the proper ducks in a row to get him the extra help he needs.

    Yes, Dev. Pedi or Neuro can be a long wait.  I think we waited 3 months for ours - but honestly - as long as he's getting the help he needs for the areas where he is behind, the visit to the dr. isn't going to change much.  Just keep on.


  • Hearing the recommendations when DS is so young is hard- there's so much uncertainty. All you can do is trust their professional opinion (and get more professional opinions) and go from there. When my son was first diagnosed ASD by EI at 19 months I was pretty incredulous that they could diagnose him so early. At 19 months he had just a few words, didn't play with toys (just lights, cause and effect stuff, water), had poor eye contact, would ignore us when we called his name, and in general acted very aloof. He was very unhappy at daycare and wouldn't engage with the other kids. EI started him on a program and while DH and I had our doubts, we looked at it like this: if he had delays, lets get him caught up so he'll be ready for kindy. We didn't focus on the diagnosis. By the time DS turned 3 he was transformed into a chatty, bright, happy little boy- who was also exhibiting some very stereotypical signs of autism. I took him to a developmental pedi and went through all the rounds of evals. I wasn't surprised to get the diagnosis of pdd-nos. It was easier to hear- I had a year to prepare myself and I started to really see how having the diagnosis isn't the end of the world. DS has been getting pretty agressive therapy combined with an inclusive setting classroom (70/30 mix, like yours), and he'll be in a mainstream kindy classroom next year with some pullout services for social stuff like how to interact with his peers,  how to self regulate, etc.

    I remember asking our EI team if it was possible that DS didn't really have autism, that he'd "outgrow" the label or maybe they just got it wrong. I remember them sortof glancing at each other and saying carefully "yes....yes, I suppose we could be wrong." I could tell right away that this probably wasn't something that was going to go away. I also remember the EI coordinator looking at my confused when I started bawling- she smiled and said that DS was going to be "fine" and that her husband taught AP physics and had two kids with autism in his classroom. She said the only accomodations they needed were extra test time in a seperate room. I blubbered something about wanting DS to be a lawyer (DH and I are both lawyers) and they ALL laughed and assured me that "of course DS can still be a lawyer!" (I'm still skeptical about that one...)

    Sorry to ramble, I just wanted to let you know that I understand where you're coming from. The diagnosis really doesn't matter at this point, just the delays, and what you're doing to help. It sounds like you're on the right track. EI can't officially diagnose anything, they're just making a recommendation.

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  • d.fd.f member
    Ninth Anniversary 250 Love Its 500 Comments Photogenic

    I am very new too but I think there's always hope. My DS was Dx'ed with PDD-NOS about 3 weeks ago. It was hard to hear but there's still hope.  With the help he's gotten at school he's made enormous progress.  I can't wait to see how much more progress he makes with the additional services and therapies his diagnosis opens the door too.  Now I at least have a better idea what he needs.

    The hardest time for me was the wait period.  It took about 4 months to see the Developmental Pedi and another 2 to see the Child Psychologist who diagnosed him.  Honestly, there was a very very scared freaked out dark time for me back in October-November when the Special Ed team first came to me and out lined his deficits in an IEP but wouldn't tell me what they suspected as the cause.  The diagnosis and having a plan of action (even if it's not set in stone) has been a bit of a relief.

     During that wait I had to force myself to step away from google,  I had to balance wanting the knowledge and being able to advocate with my mental health.  I had let the worry of the unknown take over.  Ultimately, I had to trust that the highly trained professionals who were evaluating him could make the determination between the developmental disorders.

     Good Luck!

    DS 09/2008

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