Tuesday, November 6, 2007

Finally Coming Around

A couple weeks ago when I talked to one of Jack's doctors about getting him diagnosed on the autism spectrum she asked that I get a quick statement from each of his teachers with what they thought about this.

One of his teachers wrote out an example of a typical day in her classroom with the way Jack typically responded to each activity. Great.

His special ed teacher responded to my inquiry with an email after checking with the school's team to see what they thought. These people (occupational therapist, speech pathologist, etc...), none of whom give Jack services, but who do see him in the classroom, said that they did not think Jack presented as autistic. They put forth that most of his problems were behavioral.

I didn't write about it at the time because it sort of upset me. First, right after his doctor had agreed with me that he seemed to be on the spectrum, a group of professionals was telling me that he wasn't.

Second, as I had thought a lot about Jack, I was sure that he did not just have behavioral problems, that something about him is fundamentally different from the neurotypicals. And it made me wonder what kind of support he would be getting there if they couldn't see him for who he is.

Third, by saying his problems were behavioral, they were kind of implying that we are bad parents and his issues are my and Alex's fault. Okay, maybe that's not what they were implying, but that is what I inferred.

Since I got that email, I have done a lot of close watching of Jack. And the kid is different. He's fucking awesome, but he's different. I could go into a lot of details here, details about how he can't/won't answer a question correctly about anything that happened in the past or that is slightly abstract, but that at age 4 he obsessively writes the letters of the alphabet and insists on spelling every word he can think of while reciting scripts of things that happen in his classroom, but I won't. I won't because this post would get far too long and I'd probably end up sad or angry.

What I will say is that Jack is an amazing little dude with different strengths and weaknesses, but his brain works differently than most kids his age, including his brothers, one of whom (Quinn) is surpassing him in social skills, while the other (Sam, very smart in his own right) is just keeping up with him academically.

Anyway, this is all a long preface to what I wanted to write about what Jack's special ed teacher said to me today. When I dropped Jack off, she waved me over to talk to me. She said that someone had spotted Jack stimming while he was eating lunch. This led she and I to have a conversation in which she said that, although she does not like to label kids early, she thought Jack could be PDD or Asperger's.

Thank! You!

Part of me didn't realize quite how much her email suggesting that he was not autistic bothered me until she said today she thought he was on the spectrum. My spirits were noticeable higher as I drove away from the school and I realized how upset I had felt that his teachers did not see such a fundamental thing about him. That they did not see something that was so obvious to me.

So now his teachers say they think he is autistic. His doctors say they think he is autistic. I say I think he is autistic.

'Nuff said. For today at least.


  1. Jack is fucking awesome.

    The rest of it -- labels, services, whatever -- are means to an end, to help Jack be the best Jack he can be.

    I'm glad, though, that his teachers are observing him, and noticing things like they did today. I can totally see how the other email would have been frustrating. Argh.

    (And how great must a little kid be for me to miss him when I saw him just last week? You make great kids. Never doubt that!!!!!)

  2. Oh, thank you, WhyMommy! Same goes for you. I caught myself a couple times today thinking about how fun it was to cuddle Little Bear yesterday. Yay for awesome little boys!

  3. You know, I don't think those "quick statements" are meant to be a majority vote on whether or not he's autistic - the pscyhiatrist we saw about Bub asked for a note from his nursery school teacher, but the purpose of it is to describe the issues that person perceives as affecting the child. All the speech therapists I've worked with have been so careful to avoid giving an opinion about whether he is or is not autistic - even the one who did the screening talked only in terms of probabilities.

    I'm glad you're finally getting support in what you're seeing in your child.

  4. Oh, please - yes! The difference between the services a "behavior disordered" child will get, and a child who is autistic or autistic like - is HUGE.
    Stick with what you know, YOU live with Jack, YOU love him. YOU know what's best and what's true.

  5. It's a long ride... I just wanted to give you some serious hugs because it's tough! I have two that are autistic, aren't autistic, maybe autistic. And I'm like I really don't fucking care, just give them the modifications and supports they need to be successful little boys in their own big ways. But technically, I really DO care... because I'm tired of people coming up to me and saying "Hey, your kid is weird." and then turn the corner and someone else says "Hey, your kid is so normal!" and then turn another corner and "Your kid is autistic." and then turn another corner and "Your kid is SO not autistic." It gets really tiring. Doctors, therapists, teachers...no one agrees.

    Truth is both of my kids are different in different situations, different times of days, different times of year......you know!

    My older one is seen as a behavior problem and no matter what he is dx with (there is no denying he is missing his corpus collosum) he is still seen strictly as a behavior problem. The younger one has so much more problem solving and impulse control ability than his older brother, but because he 'stims,' for some reason he gets away with stuff and isn't considered a behavior problem. But because he is social now at nearly 4 and is starting to become verbal, his PDD-NOS dx MUST be wrong. Maybe it is. But why are we so hung up on it? Just give him what he needs!

    Sorry for the vent, but I totally empathize. Elementary school really sucks. Unfortunately what bettejo says is so true.

  6. Oh, so frustrating. But at least they turned around and are seeing what you see and that is what matters as far as getting Jack what he needs. My Sam sounds a lot like your Jack ...the spelling alone! I'm glad people are finally coming around.

  7. Well, duh. He has some unwanted behaviors. Did those teachers ever stop to think what was CAUSING the behaviors? Chances are they are based on lack of advanced warning, sensory overload, communication misunderstanding. All due to being on the Autism Spectrum.
    Kids that are on the Asperger/PDD end are a little harder to identify because they do talk and they are bright, so they don't appear 'autistic' in the sense that most people think of someone being on the spectrum. I knew my son was when he was 2, but we didn't get a diagnosis until he was 7. So many people didn't believe me, but were quick to say he was manipulative or someother behavioral description that made me think I was not a good parent. But the root cause of those behaviors were autism spectrum based because he was on it.
    I think with Asperger/PDD kids it also looks more apparent once they hit elementary school and more social demands are put on them. That's when our sons became much more obvious to other people.

  8. Oh I remember...... this is truly the most frustrating time.

    I am here for you. Just email me K?

  9. Joey does EXACTlY what you describe Jack doing, with the letters and writing and echoing and all. Not answering questions is a big thing for us right now. And just for the record, PDD-NOS is autism. There are a few specialists her in VA who stopped giving out PDD-NOS diagnoses because schools were using the lack of the word "autism" to deny services (I know they aren't supposed to do that; but one must deal in realities). So I'm with Whymommy- labels are means to ends. Others look at a child differently because of labels, so it can be important to get the labels that encourage appropriate services...

  10. A medical diagnosis doesn't guarantee an educational diagnosis to get services through the school district, and our school district is notorious for this. My son has a PDD-NOS dx, but an OHI education dx. The autism dx in our case just hurt us more. They just roll their eyes and it is very clear that they think autism dx are "handed out like candy" (which has been overheard). When they were throwing Bubba in a seclusion room in kindergarten, they also requested that his education dx be changed to Emotionally Disturbed and that maybe he should just have a 504 plan. Of course that didn't fly. Just wanted to make it very clear that a medical diagnosis doesn't guarantee anything (http://miscthing.blogspot.com/search?q=complaints), which confuses a lot of people and is frustrating as hell.

  11. Ugh, this stirs up shit for me! We fought with our old pediatrician (2 docs ago) about autism. She said he was just delayed and would "catch up." Then came the PDD-NOS which morphed to ASD by another doc. School? Couldn't/Wouldn't give the educational diagnosis because Nik's delays set him too far below the "mental/language age" threshhold for an educational diagnosis but said he "does exhibit strongly autistic features." It's all about the money and services as far as school's go. Nik's old teacher told me to my face (and put in a report to a doctor) about all of Nik's disruptive and autistic behaviors. When it came time for the interview with the school psych or Nik's IEP? Not a fuckin' word! (sorry for the salty language!)

  12. Mum always knows! Just takes time for everyone to catch up!


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