Thursday, September 21, 2006

Normal

I've mentioned our lead therapist, Mary, a couple of times on this blog. And I believe that I also told you that she was much-loved. And she is, mostly. But let me tell you how weird it is when something like this happens to your child and you find someone who seems to know what they are doing and you invite her into your home, into the very heart of your family, and it sometimes feels like she has the secret key to your child. She has twenty years of experience working with kids like Oliver. And now she has a year of experience working with Oliver. And if she wasn't confident we wouldn't love her as much as we do. But sometimes it really stinks because she says things -- she believes things -- that I just don't like very much. And I'm not sure why I don't like them. Is it just because I'm not ready to see what she sees yet? Or is it because in my heart I don't believe that just because she is so wise and wonderful that she is necessarily right? I don't know but it really stinks -- like a big ole yukky skunk, as Oliver used to be fond of saying -- back before he stopped talking and I stupidly didn't know enough to savor every single thing he said.

So yesterday Mary and I met for coffee to go over the ABBLS assessment to see where things stand. Anyway, I had also asked to see the latest data for his visual schedule, which is currently part of his IEP. To consider it mastered he has to do it independantly 90% of the time and I thought we were probably getting close. And we are, he does almost every step independently except for when an activity is "all done." That he only does independantly 58% of the time. So I asked Mary if you wouldn't maybe see the same thing in any 4 year-old who was engaged in an activity. Wouldn't it also be hard to get any other four year old to stop an activity once in awhile? At that Mary looked at me and I could tell she was considering how to answer. Then she looked me directly in the eye and said:

"Christine, Oliver doesn't do anything like a normal four year old. Any other kid would have figured out the system after two weeks. But let me tell you, for as low-functioning as Oliver was when we first started working with him, he is doing really well. I never would have expected these kinds of results after only one year."

That's pretty much what she said -- word for word. I know because those words have been ringing in my ears and bouncing around my head since she said them.

And I don't know: is she right? Probably. Thank goodness that I don't get to spend a whole lot of time with other four year olds. But I'll tell you, it took a little while for the weight of what she said to fully hit me. He doesn't do anything like a normal four year old? Can that be true? And low-functioning? What the hell does that mean? Do you measure functioning as degrees from normal?

I honestly don't know what normal is anymore. I look at Oliver and I see a little boy who loves and laughs just like any other kid. So what exactly is normal, anyway? And if Oliver isn't normal, do I want him to be?

13 comments:

  1. I have come to the conclusion that only us parents can really see our kids true potential and that yes, they are so much more like any other four year old than not. Teachers can say some pretty stupid things sometimes and I wouldn't let what she has said get to you, easy said, I know. But really, you are right, what the hell is normal anyway?. Who knows what the future brings for our kids. Let Mary keep doing her job and let Oliver keep doing his, which is proving her wrong and accomplishing things "she never would have expected".

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  2. Thanks, Mamaroo. That was beautifully said and exactly what I needed to hear this morning!

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  3. Oliver probably does many things a normal four year old does. He smiles and laughs and has interests I am sure that would be shared by other four year olds. Why is Mary so quick to define the line between Oliver and his peers? It has been my experience that Owen has always held some common ground with his NT peers.
    It is ironic that now I am reminded by some Of Owen's teachers that some of his behaviors I am concerned about are those that many of his neurotypical classmates engage in regularly!!
    I'm with mamaroo on this- the teacher said a pretty stupid thing.

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  4. How much experience does Mary have in working with "normal" 4-year-olds? What is her data point? What is she basing her comment on?

    Her comment was a low blow and I would have been stunned if someone had said that to my face, true or not. From what I've read about Oliver, he is not in any way, shape, or form "low functioning". If I were you, I'd question whether I want my son to be around her anymore. If she truly believes that he doesn't (and therefore, probably CAN'T in her mind) function like a "normal" child, aren't her expectations of him pretty low? Will she push him as hard to learn if she believes he can't?

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  5. I have pretty much thrown the word "normal" out the window. I like to watch Charlie watching other children (his idea of "interaction") but I don't compare him. I certainly used to, but it has given me more peace (or less stress!) to stop comparing.

    Have you spoken to Mary about this? I would, only because I find it hard to, on the one hand, know how much a teacher or therapist can do for one's child and yet, on the other hand, feel that something must be said. I tend to avoid phrases like "low-functioning" (and normal, too).

    I try to be candid yet courteous in talking with therapists when I see things that need to be changed. It's a touchy topic, I think, and I have gone out of my way to speak to our current (and much liked) home consultant about this very issue. She does not actually work with Charlie but I email her often and her response to my asking her how she felt about me offering any criticism was, "absolutely, please tell me!".

    A good teacher ought to have her or his ears wide open for praise and constructive criticism! (I know, I get evaluated regularly for my teaching.)

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  6. I don't agree with what she said at all! It actually seems like a very silly thing to say, and it doesn't seem to fit with her years of experience.

    Oliver and Tobin do many of the same things! Tobin is a little younger than Oliver, but I often see how alike they really are. They both stand much too close to the t.v., they both seem to have trouble switching activities, they both love snacks, and they both have beautiful laughs! Tobin certainly doesn't see anything "different" about Oliver. She adores him and asks about him all the time.

    They aren't exactly alike, but no child is. Oliver is special in his own way, just as Tobin is in hers.

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  7. Oh Mamaroo, I read your post and felt the same dismay and incredulity as if it were all being said to me about my boys. Who really knows what normal is for pete's sake. She was out of line speaking that way and maybe it stung so much because you had hoped that out of everyone, she would acknowledge the great strides he's made and continues to make. And not essentially strike them all out because he's not a typical 4-year-old. Aargghh. Maybe you should, as Kristina said, talk to her about this in more detail. You deserve to have people working with you who believe in Oliver's potential and abilities. Maybe she just chose the wrong way to express herself. I hope so.

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  8. and oops, I meant Christine, not mamaroo (though hi mamaroo) It's way too late for me to be blogging... :)

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  9. i used to take fluffy to see an asperger'specialist' who had been trained by greenspan in floortime and every time i watched them play, i would feel proud of my guy and hopeful about his pretend play progress and every time she talked to me afterward, she framed things in 'aspie' language. nothing he did seemed to be in the realm of regular kid--it was all seen through the AS lens and i started to think, this woman has been playing with/talking to/observing/assessing asperger kids for so long she's entirely lost touch with the the KID in them, the regular kid stuff.

    i love that mary has been such a valuable part of your team but i don't think what she said is true or helpful at all!!! OF COURE oliver is like a typical 4 year old in many ways! how could he not be??????? and normal doesn't even belong in a conversation about kids--not just our kids but any kids.

    there is no telling what oliver CAN and WILL do! his potential is HUGE! HUGE I TELL YOU!

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  10. Here's my guess: she's heard lots of people say things like "But don't all kids do that?" when they're in denial of some sort. So saying, "But couldn't that be typical?" probably provoked some version of the standard cold-water-in-the-face speech. Regardless, it was harsh, and I also hate the term low-functioning.

    ITO normal: I've gone round and round about this also: focusing on making my child more conformist goes against a lot of my beliefs about culture and identity. I had one consultant say "I've heard this same argument from parents, but when I look at the kids it seems so crystal clear." And I get what he means by that, too. My kid "passes" pretty well, but it can be a really mean world for kids whose behavior is off in some way. OTOH, I don't want my kid changed, just taught.

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  11. My older son is the one with autism, my younger one was born 5 1/2 years later. Before my little guy came along, I had no point of reference to measure my son so everything he did seemed "normal" because to me there was no comparison. I was blissfully unaware at how affected by autism he was. Now, I watch my neurotypical younger son hit developmental milestones with ease and interact with children in ways my older son never was able to do at each age. Sometimes I am thankful for not realizing that my older son was so "different", and other times I am really frustrated with myself for not seeing it. The clarity as I watch my younger son is almost painful.

    If you have someone on your team who will speak frankly to you about your son, listen. Trust me, as he gets older, many professionals and educators will sugar-coat things and that won't do your son or you any good.

    The first step in dealing with a problem is knowing what exactly you are dealing with.

    Our kids are truly miraculous but trying to compare them to "normal" is comparing apples to oranges. Not a fair comparison and very misleading.

    Good luck and best wishes. You are a good mom for considering every possibility :)

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  12. The comments on this post have been so insightful, I almost hesitate to add mine. What an incredible group of people in this blogging community.

    We had one incredibly bad OT a few years back; she would consistently call Grant's actions "weird". It became so clear that she should not be working with special needs kids that we pulled him out of the program. We've had others who have been brutally blunt with us, but in a constructive manner that ended up being very helpful in the log run.

    As Kristina said, I'd highly recommend that you have a heart-to-heart with Mary. If you get the sense that she doesn't have an insatiable desire to help your child overcome obstacles, it's time to move on.

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  13. Those words....low functioning...*cringe* Ugh. Those same words were used by the OT from our school district when I told her after a year that Gabe was doing so well. I was so excited about his progress and she squashed it with.."Wow, I'm surprised since he was so low functioning when we assessed him."

    Hang in there. It's really about where they are going, not where they have been and Oliver is doing great :o) He is on his way, typical four year old or not, he's getting there.

    Kristin

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