Wednesday, March 02, 2011

And the diagnosis is....

No clue.  Basically, the doctor said that when a child exhibits the disorders that Dylan has, it will usually fall under a category of some sort (usually Autism).  However, not my boy.  He doesn't fit into any of their little cubbie holes.  He is most definitely not autistic.  He's way too social and makes eye contact and just doesn't have any of the markers they look for to put a child on the spectrum.  They did offer us a test where he "plays" with a psychologist for an hour or so and they determine through that if he's autistic.  I really don't see how that is going to make a difference.   He's Dylan.  Plain and simple.  He's my sweet, wonderful boy who has some challenges.   So the game plan is to do what we are doing and touch base as needed.

Before that appointment, we met with the school to go over the behaviorist's report.  Throughout the entire report, she says how much better Dylan attends to his schoolwork when he's working one-on-one with an adult. However, the final conclusion is... he needs positive feedback every 3 minutes.  I also had my panties in a twist about the fact that she starts her report with "Dylan is a 5 year old boy who lives with his adoptive parents".  Since I was not in a good frame of mind where this person was concerned, I decided to just shut up and let her talk and then address the issues at the end (in the event that she addresses them in her explanation).

While she did help to make sense of things, she didn't answer the big questions.  I wasn't the only one put off by her lack of suggestion for a one-on-one for him or the 3 minute thing.  I finally said to her "are you really going to put that in his IEP?"  She said that was her intention.  I pointed out that the IEP is a legal document which means the school and the teachers, aids, etc are all responsible for making sure that his IEP is fulfilled.  Who's going to track this?  Who's going to make sure that he's getting his "atta boys" every 3 minutes?  What happens if it happens every 4 or 6 minutes?  What about if he's having a bad day?  Are you going to expect the teacher to say "great left hook Dylan" when he's beating the shit out of a classmate?  Seriously???

The caseworker said "what everyone is saying without saying is.... he needs a one-on-one".  I told her yes and she started to tap dance.  I need to redo the rubric which previously indicated he did NOT need a one-on-one (it's a form that you circle answers, add it up and viola! you have a magical answer), then I have to talk to my supervisor and then, if he qualifies, we have to hire and train... I stopped her.

I told her that I don't expect new services like that for him this school year.  I understand that it's not as simple as pulling someone out of a pool of aids and saying - here's your kid.   What I do expect is that they will do whatever they need to do to ensure Dylan has a one-on-one for first grade.  That when I return to discuss his IEP, my expectations are that he will continue with the current path of services (speech 3x a week/OT 3x a week) and that he will have a one-on-one.  I will not accept anything less so do whatever you have to do to make it happen.

This is a new caseworker.  She doesn't know me.  I told her to talk to our former caseworker from Dylan's preschool (she knows her).  She'll explain who we are.  We aren't the parents who sit by and expect the school district to do everything for our child.  We do our part.  We just want them to do theirs.  He needs an aid who can manage his sensory needs, keep him engaged and on the right path so that he can learn.  This child is smart.  I'm afraid that if we don't do things the right way, he'll lose his love of learning.  That's not acceptable to me.  Not at all.

***EDITED TO ADD (thanks Liana!)

I did speak with her about the adoption thing.  I asked her first what the relevance was in case I was missing something.  She just kinda looked at me and said, what do you mean?  I told her that he lives with his mother and father - how he came to be my son is not at all relevant to the case at hand.  I told her that adoption is an event, not an ongoing thing.  I asked her if she puts in other kids' reports that Jane Doe lives with her biological parents.  She said of course not (everyone rolled their eyes at this point) and I told her to take it out.  My son doesn't need yet another label.  I have no problem with his adoption being discussed in his medical records, it's relevant.  Unless she feels that his behavior issues were the cause of his behavior, she needs to take that out.  She apologized and agreed.


  1. And you should sure as shit have her remove "adoptive parents" from the report. What the hell was that?

  2. Hi there--
    Good for you standing your ground on taking the adoption info out.
    He sounds like a sweetie

  3. The thing that strikes me about this entry is that you have had a developmental pediatrician evaluation and he has no clue about Dylan's diagnosis? I find this difficult to believe. These physicians are supposed to have sub-specialty training in the area of developmental and behavioral issues of all kinds. Either Dylan is a rare case or you need a second opinion.

    I know most people will take the doctor at his word, but this is where my background as a lawyer rears its ugly head and says that something smells fishy to me about this whole thing...

    You are an incredible woman and mama to fight like you do for Dylan, especially with background of your own undiagnosed disability that caused you to hurt in your youth. IMO, I just want to tell you not to give in to this vague unknown lack of diagnosis yet.

    Take him somewhere else. The psychologist might have a different opinion. Or find someplace near you that specializes in autism specifically instead of just in "developmental" disorders which can include so many non-ASD things.

    And, way to go on the removal of the "adoptive" BS!! That is unnecessary!!! OK- rant complete.

  4. Hey Karen! I guess I didn't phrase that right. He carries a diagnosis of SPD, CAPD, at risk for ADHD, and Apraxia. Typically, when you have so many things going on, it fits into a nice little category. However, Dylan just doesn't fit into their boxes.

    He is definitely not autistic. What's interesting is every specialist, within the first 5 minutes of meeting him always will ask us "has anyone talked to you about autism". I used to cry. Now I just tell them "give him 20 minutes and we'll discuss it". 20 minutes later they are saying "nope, just needed to warm up to us I guess". When you first meet him, he presents as being autistic. No eye contact, flapping and other behaviors that are very autistic like. I think that's just the way he's processing a new person or situation. Anywhere from 10-20 minutes later, he's making eye contact, the flapping stops as do the other behaviors.

    The physician we took him to is at the #1 Children's Hospital in the world and it's the second DP we've gone to. It's not just 1 doc either, it's a Fellow and we've now seen two attending physicians and they all say the same thing. He just doesn't fit into their existing categories.

  5. Anonymous4:58 AM

    Home school him until he is can give him one on one and arrange more suitable socialisation than he will ever get in the school yard environment
    Having gone down the path myself (homeschooled my eldest son until highschool) I think it would be ideal for someone who does not fit in socially. My son is now in highschool, in all the top classes and has no issues socially - unlike when he was five!!
    This was achieved through love, learning and careful socialisation. Schoolyard socialisation can be the cruelest there is and not always the best for every personality...some kids need to mature and learn how to cope with issues in a more natural setting.

  6. Hi Anonymous - my son is incredibly social (was there something in this post that made you think otherwise?)! He'd hate being home schooled. But thanks for the suggestion :)