We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

[This unintended blog hiatus has been brought to you by a dead Western Digital hard drive. Thank you... Now on with the show via the second-string computer.]

Well, we got the autism evaluation report back yesterday, and while the official-ness of it is still hard, the report contained no surprises.

(For some background history, read “Autism Evaluation - Round One” and “Three letters that change your life”.)

As we’ve said before, the evaluation was done in two parts: an interview with just Mary and me, and then an evaluation with both J-Man and us. In the final report, he scored above the autism threshold in every area.

There are two things worth noting here.

1) Since J-Man’s only 2 1/2, the doctor said he doesn’t assign degrees to evaluations at that age. So no “mild”, “moderate”, etc. in this report. I think that’s fair. It’s just too early to get something like that. We understand that.

2) This doctor doesn’t give out PDD-NOS as a diagnosis. I respect that. Especially at this age, PDD-NOS is like saying, “hell if I know?” In his opinion, either you’re above the threshold or you’re not. There’s no “kinda” in this case. I appreciate his willingness to take a firm position and not leave it hanging in the air.

For people hedging on shelling out the money for a private autism evaluation, here are some of my brief thoughts after a day’s worth of hindsight.

• I feel like we got our money’s worth. We paid $1,400 for five hours of evaluation, feedback, and question time, so at that level of money, that should tell you that I was satisfied with the quality of the expertise we got.
• I feel like the report is an accurate assessment of where J-Man is right now. I also believe the report was well-written and will be just what we need when his IEP time rolls around.
• The doctor was straight up with us, and I appreciate that. I didn’t want to hear the outcome, but he was direct and honest with us. As we make our peace with it, that will help J-Man get what he needs. In the end, that’s what matters.
• Getting an impartial, outside opinion was essential - something we understand much better now than when we started this part of the process. Mary and I, our families, his therapists, our friends, and everyone else we know are just too close to him and us to give that kind of honest, impartial evaluation and opinion. Going completely outside that to get an unbiased, straight up opinion was completely the right decision.
• The report doesn’t change a damn thing about how we feel about him or look at him. Instead, we love him even more - how is that possible? - for how bravely he has faced his challenges so far. And that makes us more determined than ever to do everything we can to help him be the best person he can be.

Final verdict - if you think something is going on with your child, do what we did and get an evaluation. What you get out of it is an investment in both the short-term and long-term future for your child and your family.

I’m still working through a LOT of emotions about all this, but I feel strangely calm at the moment. This has been a rough few weeks, and sometimes I feel so tired I can’t focus my eyes. I’ve spent a few nights in bed staring at the ceiling, feeling panic coming on. I’ve been all over the place with it. I may feel determined, but that doesn’t mean I don’t have enough anxiety to kill an elephant sometimes.

That’s the news for now. More in the coming days and weeks, especially after I get my real computer back…

We have a diagnosis - ASD.

As our readers know, we had Jonas’s autism evaluation yesterday and the doctor didn’t even need to score the evaluation to tell us that Jonas has an autism spectrum disorder (ASD).

That spectrum includes a wide and diverse range of things so the more exact diagnosis won’t be clear until we get the full write-up back in three weeks. Given the discussion at the end of our appointment, it appears that we’re looking at something significant. Either way, the wait is pretty much over.

I want to believe it’s inaccurate, but the rational part of me knows it’s correct. I know I’ve been in denial for a while. I didn’t want to believe it, and I still don’t. Jonas didn’t much care for the evaluation, but I thought it was still a fair snapshot of where he is right now. I have enough confidence in the doctor to believe his assessment is medically valid.

We’re not really in the right mental place to talk about this yet. At one level, nothing is any different than Tuesday. He’s still the same, wonderful, beautiful, life-filled, wondrous boy he’s always been.

The reality is that the road ahead looks a lot more uncertain. Yesterday was a very bad day. I went to Barnes and Noble this morning to do what I do to cope with things like this - I bought books about autism. I sat at the reading tables and looked through them. It was all I could do to not start crying again. And I do mean again.

That said, I know we will be fine. We just need to process this for a little while.

To all those who have supported us and continue to do so, we love you.

That’s all for now. More to come.

J-Man’s autism evaluation is tomorrow morning. My brain still hurts from the preliminary conversation we had today with the county about his transition from Early Intervention to preschool in six months. I don’t even know where to start with the fire hose of information that entails.

In any case, time to switch gears to our big day tomorrow. What we’re hoping for tomorrow is an evaluation that accurately describes where he is in his life right now so he can get whatever he needs to be the best Little Man he can be. We have confidence in the evaluator; our hope is just that he feels comfortable enough to be himself during the evaluation. He really struggled with the Early Intervention evaluations, but those were some time back and with evaluators we had less confidence in. Hopefully this one will be easier for him.

He gets frustrated with himself pretty easily now, though, and watching your child struggle through that is one of the hardest emotions a parent can bear. If you’re going through this, you already know what I mean. And you also know how much you or I would do if we could just carry some our children’s struggles for them, even for a little while.

I’ve said this to our various evaluators and teams before, and I think it’s worth repeating here. When we get the results of an evaluation, we don’t want to think we know; we want to know we know. I know that’s a lot to ask at this point, but it’s the standard I’ve set for us to work toward.

I know the reality is that there’s a lot of educated guessing at this stage. It’s the professionals who admit that and make their best call from that who I respect. It’s the ones that swoop in for an hour and pronounce judgments who I don’t. We have plenty of reason to believe that tomorrow we’ll be getting the best possible evaluation we can get at this time.

In three weeks, we’ll get the results of tomorrow’s session. That’ll be a long wait. It’ll still be a relief to get to noon tomorrow and have this behind us. We’ll cross that next bridge when we get there.

J-Man has some sort of chest congestion/cough thing going on so we rescheduled the autism evaluation for next week. He’s been dragging around today so we knew there was no way he’d be up to it, especially given how much he loves evaluations in general. [insert sarcasm]

Everybody seems to have bad mojo today. I have felt, as we say around here, “urfy” today and even our Civic is marooned at the dealership tonight to have the wheel bearings replaced.

Unfortunately, it’s the only thing still under warranty…

We had our first session with the doctor doing J’s autism evaluation. While spending two hours talking about all the things your kid struggles with isn’t exactly our idea of a fun morning, we were impressed with him and the interview. What a difference it is from the evaluations we’ve had with the county!

J-Man stayed home with my dad this morning while Mary and I took the 30-minute drive to his office. We’re so rarely without him that it was like this surreal date.

Anyway, the interview was based on what’s called the ADI-R - the Autism Diagnostic Interview - Revised. A pretty readable description of it is available here. What I liked about it is that it has a standardized structure to it, but it’s not a purely formal ‘test’. It felt like a conversation the entire time, and we were able to talk about things in whatever way or order we felt comfortable with. Again, what a huge difference from previous evaluations! The ‘test booklet’ was the size of an average magazine, so it was thorough. At the end of the main interview, there was very little we hadn’t covered.

The big positive in my book was that he listened. It’s that simple. The one thing he did that I noticed immediately was how often he said, “earlier I heard you talk about…” and then would move into a follow-up question that clearly demonstrated that he was paying attention to us. I don’t think we had to repeat ourselves at all unless we wanted to. He seemed to get it all the first time. If you’ve ever had to repeat your child’s story over and over again, especially to really dense people, you know how great it feels to be heard the first time.

The doctor will review the results of this session and score it before he sees J-Man so as to ensure a completely independent evaluation from the next round. This should give us some confidence in the final results if everything matches up.

So in two weeks, we’ll have our big day. Right now, I dread it, but I have a lot more confidence after meeting with the doctor. This is so hard on J, but he’s brave, more so than us oftentimes. I just want this to get easier for him. This hasn’t been the best couple of weeks, but then out of the blue he runs up and tackles me cackling so hard he snorts. Those are the times we know it’ll be OK.

We had to be at the doctor’s by 8:00 so we had to get J up way too early. As a result, by his 12:30 speech therapy he was toast. It was not a good session, but to her credit, his speech therapist coaxed some words out of him. The new one was “Boom!” You know, after all this, every new word makes up for whatever else goes on. Yesterday was rough, but last night he said bubbles (’buh-buh!’) while playing with his bubbling bath toy in the tub and that washed the whole day’s difficulties away.

It’s the little victories, one at a time, that make all the difference.

As Mary said, next Tuesday begins a three-part, private evaluation to see whether J-Man has something on the autism spectrum.

After reading endless books on the subject, he doesn’t seem to fit any of the categories for ASDs, but he does fit some of the characteristics of some of them. The DSM-IV (the Gospel According to Mental Medicine) requires kids to meet some number of criteria within a particular diagnosis in order for that diagnosis to be, um, diagnosed. As best we can tell, he doesn’t cross that threshold for any of them. I suppose if it’s any of them, PDD-NOS (a.k.a. “um, we don’t know”) is the most likely one, but who knows.

In case you’re wondering why we’re having this evaluation done - and paying for it out of our own pockets no less - even though we don’t think he is on the spectrum, the truth is that we want to either rule it out or keep it in play based on a thorough evaluation, not the drive-by evals we’ve gotten through Early Intervention (EI). We might as well shake a Magic 8-Ball for all the good those evals have done us.

Don’t get me wrong. We have plenty of good things to say about EI; this just isn’t one of them.

The evaluation will take place over three sessions over a four-week period. The first is just for the parents to be interviewed, listened to, and go over the very long, and pretty depressing, questionnaire we’re filling out. Thank God an evaluator is finally listening to what we think! The second - two weeks later - will be us and Mister Man. The third one I guess is to go over the results.

He absolutely hates evaluations. He doesn’t “test well” apparently. Of course, the Dart Throwing Diagnostic Indicator tests we’ve had so far probably account for a lot of that. If he had the fine motor planning control to flip them off, he probably would have. In the end, it felt like an episode of Dance Fever (”Your moves were sluggish and off the beat. I give it a 42.”) with about as much statistical relevance.

Anyway, this private practice comes highly recommended. We’re finding J-Man’s diagnoses by process of elimination as much as confirmation, so we hope this gives us something definitive one way or the other. In many ways, this won’t change his therapies, but it will give us something more to work with when he graduates into the school system’s programs in a few months.

We’ll keep you posted.

On Tuesday, we have our first meeting with a doctor who is going to do an autism evaluation for the J-man. I’m of 2 minds about this: I’m afraid to go forward, because I worry that he will come back with a diagnosis of autism… but I’m also looking forward to it, because one way or another, we will know something at the end. The first meeting is actually just for the parents – it’s not until March that J-man will actually meet up with the doctor for a two-hour evaluation. We haven’t had the best luck with the county evaluators at this point – one that occurred in our home had the doctor actually yelling at my son. That’s part of the reason we’re going with a private practice this time, even though that means we have to pay $1400 out-of-pocket.

I’m afraid, and I’m excited. Reminds me of worrying about labor…