Testing Testing 1 2 3

3 weeks ago we had our Early Intervention assessment. Yesterday was another one, this time at Children’s Developmental Medicine Center.

I felt surprisingly un-anxious. Well, except for the 2 minutes when I thought our insurance denied coverage. While on our trip to South Dakota I had our mail held. And I opted to pick it up since the post office is close by and I wasn’t sure what our mail carrier would do with the big stack if they brought it to us. (Our mail box is teeny tiny, often mail is stacked inside the foyer, on the stairs.) This, like everything, did not go as planned. Turns out that post office is not the one you pick your mail up at. This isn’t the first time this has happened to me, it was a problem in Atlanta on more than one occasion. I don’t quite understand why the post office website doesn’t tell you which post office to go to when you put your mail on hold, but that is a rant for another day.

Anyway, we got back on Sunday but I didn’t get our mail until Thursday and they didn’t deliver any in the mean time. There was a decent-sized stack to bring home. In the midst of that stack were a bunch of letters from Children’s about our appointment, as well as two letters from the insurance company. I opened them in the wrong order, which only left me totally confused. But once I had a few minutes to sort them out, I read the first one first. Which denied coverage for the referral to Children’s. My anger began to bubble inside me, and then I remembered the other letter, read it, and saw that just a day or two later they changed their minds. No explanation in either letter. A little bizarre. But they allowed it.

So once that almost-freakout was over, I could sit back and just wait. I didn’t feel nervous or anxious or consumed with curiosity. I am not really sure why that is. My best guess is that no matter what anyone says about what’s up with Graham, it won’t change my day-to-day. At least not immediately. He will still be the same, whether there’s a name for it or not. I think it’s helpful right now that I am very far from being in denial. Two months ago, when I realized the extent of his delays and the very real possibility that he could be autistic, I had a good week or so of fear and mourning. More mourning than fear, honestly. Because I have a strong suspicion of what they’re going to tell us and it hit me right then at the very beginning. I am not trying to believe that he’s just at his own pace or just a little eccentric. I think I’ve already accepted it.

Okay, maybe not. That makes me sound a bit more in control than I am. The honest truth is that inside I feel pretty sure. But outside is another story. The other day a stranger, overhearing my conversation, started to tell me all sorts of wonderful things about his siblings with autism. And I had difficulty keeping it together for a bit. I am okay when it’s just me, but outwardly it’s still a challenge.

But evaluations, those I can handle. I was really happy about this one, to be honest. We never expected to get in so early. I don’t know how long their waiting list usually is. I was expecting maybe the spring or summer, but there we were, yesterday morning, all bundled up and waiting for the bus. The Bug was not particularly happy about this. Not the waking up part (although I don’t feel bad about that at all, it’s not like he never wakes me up early) or the outside in the cold part (it was pretty frigid and the bus was late).

I don’t mind public transportation with the Bug much at all. He loves it, is usually mellow, looking around at the other riders and out the windows. And given the insanity that is the big medical compound, I would rather not drive. We got out, found our way through the hospital (it helps that it’s connected to Eric’s hospital, so he knew his way around) and got to our appointment. Though, sadly, there wasn’t really time for coffee since the bus was late.

Graham got his weight and height checked. I filled out a teeny bit of paperwork. (I’d completed mountains of it prior to our visit.) I did notice, as I was filling things in, there was a “fast track” note on our appointment. And one of our doctors was the Division Chief. It makes sense, I guess, since I hadn’t expected us to get in so early. It may not mean anything. I didn’t ask. And then we were in, with a pediatrician and a pediatric psychologist. Eric has a light rotation this week so he got to sit in for the whole appointment with us. Our Bug, being his usual self, immediately got to work at the toys set out for him.

We’ve only had one previous eval but I already felt like an old pro. Lots and lots of questions. This time it wasn’t as depressing since I knew what the questions would be. When they ask if he understands words like “Where” or “Mama,” if he knows parts of his body, if he responds to his name. I know he should. I know he doesn’t. And it doesn’t hurt as much to say it this time.

On top of the questions there are lots of games with the Bug that are much more than games. There are pegs and blocks and trucks. As the watching parent, you don’t know what any of it means. There are pages and pages of items to get checked off. There’s so much to be done that it doesn’t really make sense for them to explain what each thing means.

It’s kind of dizzying to watch. Each set of skills has its own set of toys and they must be brought out and then carried away quickly and subtly, preferably while Graham is looking at something else. Since Graham tends to focus on things to the exclusion of any reality around him, this is easier than you’d think. But to see it constantly for a few hours is still an impressive feat.

I don’t have a lot of concern on Graham’s behalf. I don’t see them ask him to stack the blocks and get worried about whether he’s going to stack them. I am pretty aware of his capabilities. Somehow I’m able to suppress that Type-A super-test-taker part of myself completely. (Testing is my JOB. I am a super hardcore test person. But I feel not even the slightest glimpse of it with this.) The games where he has to retrieve hidden items get him rather upset. This time we had to take a nice long break to calm him down after one in particular. Not a big surprise, he tends to cry for help in such situations even if the thing he wants is not hard to get. I’m proud of him for making it through with only one real meltdown and requiring only one pack of toddler fruit snacks and a few graham crackers as incentives.

If anything I think the test made me feel good, in a strange way. When Graham got upset about something, I knew immediately what it was and had a good idea of how to fix it. He may not be able to communicate well, but I’m learning him well enough to know a lot of things anyway.

3 hours later, it ends with a whimper. Come back on Monday for the “feedback” appointment. Come back without Graham. Still not exactly sure what they’ll tell us, but I imagine this will be our first chance for some kind of “diagnosis.” Something besides the pediatrician knitting her brows together and saying we should see a specialist. Something besides Early Intervention telling us what age group he’s testing at. He’s only 18 months, I know it’s difficult to say anything with certainty right now, but it’s a chance to say something.

Is it weird that I’m looking forward to it? I just want things defined. I want someone to tell me what the next step is. Then we will jump in and do it.

It’s also worth noting that yesterday we FINALLY had our first actual Early Intervention session. (Not their fault. Vacation, snow, etc.) There are good and bad things about this stuff. I sometimes worried that I wasn’t an interactive-enough parent, that I could have done more to stimulate Graham’s development. I don’t think that so much anymore. But then I see his worker interacting with him and I realize how much more I could be doing. It’s not my fault that he’s delayed, but I could be better to help him work on it. The thought of that is a bit exhausting, to be completely honest. Getting through the day with him is hard work. Now feeling like I should be more vocal, work on signing, interact more… I know I need to try but it’s a lot to take in.

I think the major thing I need to work on right now is not getting too wrapped up in the expectation of our Monday appointment. We were stuck in limbo waiting for all these appointments to start. But I’ve realized that we’ll still be in limbo afterwards, just a different kind. There will be constant checking in, regular re-evaluation, not knowing whether he’ll move forward or back over a given period. I don’t even know how long that limbo will last. Months? Years? I’m trying to take it in stride. And trying not trying too hard so that I don’t wear myself out by attempting to be totally together and stable.

And here is a Bug playing his keyboard with his feet.

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3 Responses to Testing Testing 1 2 3

  1. Tamara Alcozer says:

    I’ve just recently found your blog and find your honesty inspiring.
    I love the picture of him playing the keyboard with his toes, too cute!

    • Jess says:

      Welcome, Tamara! Always happy to find new readers. And always happy to post cute baby pictures, too. :) Hope you’ll be back.

  2. Hi Jess,

    I just want to say you are a wonderful mom and I can relate. I have been working with autistic children for many years and 15 years later the doctors just diagnosed him with PDD-NOS. Why so late? Because he is very high functioning. They had so much trouble diagnosing his disorder. I wrote about my odd experience on my blog.

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