Being Systematized

We went to LP’s assessment for EI services this week.  The assessment consisted of a doctor and our services coordinator asking me a bunch of questions, the service coordinator leaving halfway through to attend another meeting, and LP getting tired and mad about yet another poking and prodding session.  I’m pretty sure the little dude swore at me afterwards.  Fortunately, he doesn’t know how to make any consonant noises.  So it was more like “Aaahhh… Ooooouu”.  I’m onto you, LP.  I know you didn’t want to follow pen lights around or show off your tunny time skills, but that is no way to speak to your mother.

Ok, but about this assessment.  It was the first time I had to take care not to speak too highly of my child’s abilities.  It didn’t feel great.

For instance, LP can get his chest off the floor during tummy time, but only if I arrange his arms for him. His hypotonia is more pronounced in his belly and arms, meaning he can’t pull his arms to the front on his own. When the doctor asked me if he can push up on his chest, I said no. I figured, if he can’t get there on his own, he isn’t doing it. For me to say yes would have made him look more developmentally on track, which would be one more reason for him not to qualify for services. Yeah. Kind of screwed up, right?

So rewind, let me say a couple things about my first job after college.  Group home for boys.  It was high level care.  High level as in before hospital commitment, not as in the Ritz Carlton.  I came home sore and bruised, with stories of sitting in padded rooms while those young boys ranted and cried, trying to hurt themselves and others.  Most of the boys had been in at least 10 or 12 different home placements before they landed with us. They’d been abused in ways I had never even fathomed. And there I was, 22 years old, pretty much raising those kids.

I was at that job for over 3 years, until I realized that it was eating me alive. To this day, I wish I’d left it in a better place,  been able to stay connected. But I couldn’t.  At 22 years old, I just did not have the skills then to keep up healthy boundaries. Too heartbreaking. Too complicated with no solution.

Maybe it was because of the way I left, but I hadn’t thought about that job in a long time.  I also never, ever, ever imagined that I would see any relation to those boys and myself.  But sitting in that brightly lit room, holding my baby, it came back to me right quick. I watched, as those two ladies, taking notes, cast glances at each other when something interesting came up in my descriptions.  A few minutes in, my coordinator stood up, gathered her things while I was in mid-sentence and looked at the assessing doctor, and said, “Ok, well I have to make this other meeting, I’m sure you’ll get everything you need from the mom.” She also told me, as she was leaving, that this assessment was also the IFSP meeting, during which LP’s level of service would be determined.  I had been asking people for two weeks when that meeting would be.

Ok.  I remember now.

I remember sitting at the same cheap folding tables, listening to parents try to talk about their kids, understand why they couldn’t have more visits, what it meant to be rewriting their IEPs, what they were supposed to do in order to regain parental rights. One of us might say, “I think what mom is trying to say is…”, while we explained things for the parent in words that the other cadre of people (therapists, teachers, social workers) could understand.  We (the team) would go in and out of those meetings to suit our scheduling needs, because at the end of the day, it wasn’t about the parent sitting there, or even the kid himself.  It was about the services we were providing.  So each of us did our little part, and the machine moved its gears, bit, by tiny bit.

I really understood then, what has bothered me so much about receiving EI services.  I am in The System. It is a system in which people often refer to you as your functional title instead of your actual name, because their case loads are so full, they just can’t remember.

It is a system of providers. You get assessed.  Your need is quantified.  Then you have to make sure you look too good, or else no providing. What do they provide?  Something that is supposed to make your baby better.

It is a system that has put a great deal of thought into where your baby should be, and by correlate, there is quite a bit of attention give to where your baby isn’t.

It is a system that by its nature, in an attempt to make equal, classes and divides the children it serves.

I know that my situation isn’t the same as those boys in the group homes.  They had been abused, lost their parents, bounced around.  I wonder, though, from their point of view, might it be the same?  What does it mean to have an entire team of people trying to help you be different?  I saw how that affected those kids to be in a system that looked at you as something to be fixed.  Instead of fostering skills and adaptation, as the goal was, what happened instead was that those kids were taught a very subtle but powerful lesson: The solution to your problems lies outside of you.  It lies in services, service providers, The System.

Those ladies have not told me a single thing I didn’t already know.  I felt this very same thing with our karyotype test that we had to do in order to “officially” have LP diagnosed with Ds.  I already knew my kid had Down syndrome.  I grew him in my body; I knew he was different.   It might have taken me a few weeks to figure that out, but I knew.  Still, no one would talk to us about him until we got that test done.  Similarly, I already know where LP is delayed.  I’m his mother; I can see where he struggles.  It is not rocket science to know that if his arms are weak, he needs to use them more.

Before anyone freaks out, I’m not rejecting EI altogether.  I understand that it might come in handy.  EI, at its core, isn’t about getting a kid to any point earlier, it is to help them get there is a healthy way, without maladaptive habits.  I thought that the physical therapist who did our PT evaluation was super knowledgeable and clearly operated on good evidence-based practice.  She has seen way more kids with Ds than I have, and that is worth something.  Despite that I feel a strong understanding of what is happening with LP right now, it may not be so clear in the near future.

I’m also not trying to undercut the principles behind EI. It is a huge step for a society to recognize that all people deserve support in order to take their place in the human family.

But… I have reservations. Do these potential benefits add up to something I need so much that I want to be in this system?  Is it going to change the course of my baby’s life, or is it just going to snip away at the edges?  I’m not sure. The very name of EI has the word Intervention. I guess my baby needs to be intervened upon, and that stings a little.

Let me know when you figure it out, mom.  I'll be here.

Let me know when you figure it out, mom. I’ll be here.

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9 Comments on “Being Systematized”

  1. TUC says:

    Ahh, The System… that is one of the hardest parts for me. Starts with EI, and ends never. But you are an in-tune mama and an advocate so you will manage that system, instead of it pushing you around.

  2. Lisa says:

    Jisun, I highly, highly recommend you read Disability is Natural. I think it might resonate with you.

    Also, I really want to hold LP :)

    • ji says:

      I do need to read it! I’ve gone through the website a little and it does speak to me.

      I’m already planning a trip to Fullerton. Get ready, girl.

  3. I so love your example. I often asked, will this or that service really matter

  4. I totally get where you are coming from.

    One nice thing about our ECI here in Dallas is that they do it in our home, 1 hr every 2 weeks. So while we are probably doing the same thing, it feels less “medical” and more “how-can-we-help-Little-Bird”, if that makes sense.

    Keep us posted on how it goes…I like your perspective

    Peace,
    LBD

    • ji says:

      You know, I really liked the PT who did our in home assessment and I think it was partly because it was in home. But in CA you have to go through your insurance first, so that whole benefit might not even be there…

  5. Diane Hill says:

    Oh man…I feel ya on this one. We had our first evaluation Friday and I still don’t like the idea of starting therapy, though its much needed I suppose. I’m just hoping we have a good experience with our therapists.

  6. gstick61 says:

    Have you read Foucault? Seriously this is his thing. I really found him so interesting and useful in our decision to unschool. Anyway…I struggle with as you know. I find that I want Jude to have the best life for HER not some the best life as set by some arbritary notions of “normal.” I find myself on a balancing act of providing what I think she needs without trying to make her like everyone else. Not my goal you know?

    • ji says:

      Yes, exactly! Maybe it comes down to a society v. individual thing for me. He can be individually all he wants to be, but I feel like as a mother, I need to prepare him for society. Gotta go read some philosophy now… :)


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