Stating the Obvious

Charlie is enrolled in our state’s Early Intervention Program, Early Steps. Like any state agency, the amount of pointless paperwork is high. Luckily, I spent a couple of years in Special Ed so this isn’t exactly unfamiliar territory. This week Charlie had his second “annual evaluation,” which is designed to see if he still needs to be receiving services.

I used to be pretty excited about evaluations, but these days my enthusiasm has distinctly waned. They seem pointless–I know we’re behind and even if we weren’t we have a diagnosis (or a handful of them) so we get services either way. This is truly just a formality.

And it’s an annoying formality. Not as annoying as guys who wear baseball caps sideways, but maybe the same as guys who wear baseball caps in restaurants. Side note: What is with the sideways cap? I get individuality. I get fashion as a form of self-expression, but this is just a copy of a look that was pretty horrible to begin with. And what kind of woman dates the sideways hat man? ARGH.

Back on point. So they ask you a question. You answer it. And then you have to “prove” that your answer is accurate. Again with the argh. They know that kids and dogs are different, right? Buster will sit and roll over repeatedly for a dog treat. Charlie is a little less compliant. Perfect example: A year ago, Charlie could play a mean game of peek-a-boo. This year, however, he’s two and he shows zero interest. I don’t think he’s forgotten how to play peek-a-boo–I think he thinks it’s boring and childish. GO FIGURE. He’s two. He also plays with more sophisticated toys, watches TV, throws temper tantrums, and can be reasoned with (some). I mean, he’s at a different developmental stage. So I can’t prove that he can play peek-a-boo, but I can promise you that he does.

You should see the toys that they bring to entice him. I mean, come into my house and it looks like Toys R Us threw up in there. Each room has it’s own set of toys–every single one of which looks like a it could cause some kind of hallucinogenic effect. One has so many pulsing, blinking lights that we actually call it “the seizure toy.” That one is, of course, Charlie’s favorite.

The testing kit comes with a plain, two-piece plastic puzzle. Or a blue cup and red block of wood. Charlie just sits there looking at these things like, “who in the hell left this crap on my tray? Got any toys? How ’bout an iPod?”

At one point, after he stared blankly at the cup and the block of wood, I asked what we were tying to get him to do. “I want to know if he can sense spaces–that the block of wood can go in the cup.” So I got out our giant, light-blinking, carnival-music-playing gumball machine from Fisher Price and he happily tried to put gumballs in that. I mean, does he look like a chump? Put a cube in a cup–as if.

At the end of the evaluation came several standard questions that I’ve answered in the past. One of which was, “what are you concerned about?”

Here’s how you know I’m a crackpot: In my head I thought, “nothing really.” I mean, I know we’re behind. I know there are issues. I also know that I’m doing everything in my power to help give Charlie the best life possible. So he might be in a wheelchair. Really, so what? I’ve come to terms with that and a whole host of other what-ifs. I can’t afford to waste any more time worrying about that. I’ll deal with the future when it gets here.

The evaluator also tried to probe me a little to see if I was worried about Charlie’s vision. Again, I told her that I wasn’t and again, crackpot alarms should be going off in your head right about now. Here’s how I see it: I know he sees some. He sees the television and the computer. He sees a cell phone in your hand or an iPod. He sees toys on the floor that interest him and he crawls towards them. He looks towards unfamiliar noises. The eye doctor is unable to detect any field defect and Charlie can track a slow-moving object. His vision isn’t perfect, but neither is mine. If later in life I find he does better with some augmentative devices, then fine, but he’s not blind and he uses his vision quite effectively when he feels like it. I can’t make him look at things if he doesn’t feel like it, and he doesn’t use his vision if he doesn’t have to. These are deficits, but not a worst-case scenario. I don’t think he’s going to grow up to be a photographer. But that’s fine. Really.

They’ll be getting back with me pretty soon with the results. I’ll keep you posted.

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Comments

  1. You are very inspiring… Charlie is so lucky to have such a cool mama!

  2. Oh Gosh, Katy! I can sooooo relate! We just got Faith's TEFRA yearly review in the mail. It came as a 25 pg review w/ only room for one dr/therapist/specialist meaning we have to add our own pgs. And they were so kind to send us a postage paid envelope w/ it to return to them. The funny thing is, the original review that they sent didn't even fit in the envelope, before we completed the paperwork and added our own! LOL! I love that….

  3. Melio (MelissaInk) says:

    … he uses his vision quite effectively when he feels like it. I can't make him look at things if he doesn't feel like it …

    You can't make a "typical" 2 year old do this either. My oldest was in EI for his speech. When he was too old for their services, he was tested by the public school. He was totally uncooperative with the lady (and I would have been too, she wasn't much fun) and ::surprise, surprise:: he tested out of speech by ONE point. That ONE point made him disqualified for services. Thanks, lady.

    Anyway, I think his speech is still behind is peers, but I see constant progress.

  4. You know, you may very well be the most well-balanced woman on the face of the Earth. The places you have reached inside your head are amazing, though I am sure that along the way the journey wasn't nearly as easy as you could make it all seem to be.

    But your attitude, your wit and sense of humor about things, these tools are what our kids need around them the most, especially the humor. I consider humor to be THE most important thing to have when it comes to dealing with any of the feces life's monkey hurls in our direction.

  5. We just got ours back. Caleigh is at the 6 month level…at 2 years old. I knew that, uh, thanks….

    What are you thoughts on the sideways hat wearing person that refuse to remove the tags from the sideways hat? LOL

  6. Katy,

    When Ashley had early intervention, the teacher came to our house one afternoon to do the evaluation. She wanted to see how many blocks she could stack at one time. Ashley (age 1 1/2) had stacked a lot and then told the teacher "I don't want to stack anymore damn blocks" She thought this was so funny and still tells this story today, Ashley is now 12 1/2.

    Gwen in Florida
    Mom to Ashley

  7. You just described to a tee what I felt during all of Graham's evaluations. I hated the feeling of being under the microscope… and hated even more the pointing out of how far behind he was…instead of how far he'd come.

  8. Charlie is so lucky to have a mom with so much optimism for him. I also think you're very realistic, and consider him an independent thinker- and what a wonderful thing for you to do!

  9. I will second that, Charlie is very, very lucky to have you as his mom Are you balanced? I guess, but mainly I think you're terrifically realistic. And funny. I reached the same point of nonchalance about Max's evaluations. First, they were painful; then, like you, I was all, I KNOW he is behind, I DON'T need to know by how much, let's just DO what we can to help him.

  10. Blogzilly–balanced? Hardly. At peace? Mostly.

  11. I think you make a good case for a change in procedure. Here's something you can introduce to your EI 'pros' – Transdisciplinary Play-based Assessment by Toni Linder. Not new – copyright 1993, but the last school district I worked-in was forming teams for this to eval 3-y/o transitioning in from EI. I'm not seeing big formal evals from EI on the infants I treat. I do think parents can affect how program procedures play out – if you are so inspired – even after Charlie transitions into school.
    Barbara

  12. "The seizure toy"–LOL. I understand your annoyance with the evaluation. It does seems a little pointless. I wonder if the person doing the evaluating thinks the same thing.
    And what IS with the sideways caps? I feel that way about the "goth" look too–all of them try sooo hard to look sooo unique–but the end up looking the same–ridiculous.

  13. Hey Katie! I couldn't figure out how to follow you (maybe you don't have it enabled?) but I added you to my RSS feed.
    I just wanted to say that I read a few of your posts and they are wonderful- well written, interesting, and inspiring. Charlie is so lucky to have such a smart, loving, and devoted mom!

    Shelly

  14. Oh yes, btdt many times! I was honestly thrilled once we aged out of EI, because in our case they just weren't that helpful. Kind of like all you pointed out – useless stuff we already knew!

    Btw, my name is Melanie and I have triplets w/CP. They are 5 years old. I love your blog! You are a cute family!!

    I have a blog, as well, feel free to check us out!

  15. I can't make him look and he doesn't look if he doesn't feel like it.

    I can't think of two statements more suited to describing any normal kid. Other than resorting to punishment or bribery, I can't make my kids do something they don't want to do and if they don't feel like doing something? Believe me…. they aren't doing it even if they did it yesterday.

    The only difference is that I am likely talking about jumping into a pool rather than using their vision.

    More and more, I can relate to the things you say about Charlie because they sound like such normal things for a child. I will catch myself thinking – you can reason with him at 2? Help me out with my 7 year old because he doesn't like reason!