Monday, October 22, 2007

Clutching

Em still likes for me to lay down with her at night as she falls asleep. Because N likes this, too, I alternate nights with them. Tonight was Em's night. As she started to drift off, I felt her hand search around under the covers for mine, and then, when she found it, she wrapped her big-girl fingers around my pointer finger and my heart positively splintered with happiness as I was lurched suddenly backwards ten years to when she was a newborn and would hold onto my finger as she breastfed, as she screamed, as she drifted off to sleep, as she began to explore the world.

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Today was part one of N's IEP process--the part wherein we discussed what kinds of evaluations need to be done before we can begin to discuss what services he needs in the classroom.

Bottom line: I'm not sure it went well. Actually, I'm half certain that I got fucked. But I don't know for sure, because I was alone, and I can only take so many notes while trying to watch out for the multitude of barriers--however camouflaged--being thrown up in my path with every word I said. (I had to go alone. There was no one other than Baroy available to watch N while we met--at 2:15 in the afternoon, there aren't a lot of babysitters available, and unfortunately, since one of the main points was his SOCIAL ISSUES, I didn't really have the option of sending him home with a friend, you know?)

I'll see tomorrow, when I'm supposed to get the written assessment plan, but I think the only assessments will be for OT and speech...with the latter being given quite reluctantly, to be honest, after the speech therapist talked about having 'chatted informally' with him and seeing issues, but nothing that would likely qualify him for services. That tune changed a bit when I announced (thank GOD things worked out this way...literally two hours before the meeting) that I had made an appointment with one of the top private SLPs in the area for a private assessment in mid-November. There was a bit of frowning around the room after that, and a relatively ham-handed attempt by the school psychologist to totally undermine me. [Him: Do you maybe want to put that assessment off until after you see what our testing has to say? Me (in my head): Why? So you can deny services and then force me to wait another six months or a year before you have to consider the assessment I get? Me (out loud): Oh, she's so booked up, I'm not giving up this appointment! We'll just see if anything she has to say adds to the mix. Can't hurt, right? Him: (Forced laugh.) Speech therapist: Well, then, I'll just make sure to cover everything that might be addressed by your evaluation! It'll save us all time. (What she was planning to cover if I *didn't* have such an eval planned is anyone's guess.)]

[An aside: $400 for a speech assessment, of which POSSIBLY half will be covered by insurance. Or maybe none. Would it be too obvious a pun to say that I'm speechless?]

It's funny, because on one level it SEEMED like it was a very positive meeting, and that everyone in the room was concerned about him and agreed that there were issues. But then there were all these red flag moments. Most red flaggish was the psychologist's immediate determination--without ever setting eyes on my kid--that he has social anxiety disorder and needs medication. "You have private insurance?" he kept asking me, over and over. "Because social anxiety falls under a MEDICAL issue, not an academic one..." He did mention once or twice ways in which he could help me navigate that part of the issue once/if N is 'in the special ed system,' which sounded like he thought he'd qualify SOMEWHERE. But he also said things that he clearly thought were going to be reassuring but were actually just obnoxious and condescending, such as, "We'll definitely be keeping an eye on N over the next couple of years to see how he's progressing." [Um, DAMNED STRAIGHT you will be. Because I'm going to be on your asses from here on out.] To me, statements like that are echoes of the preschool assessment, and are saying nothing more than, "We're going to deny you services again, but don't worry...We'll keep an eye on him, and when things are really messed up, THEN we'll step in. It may be too late by then, but we'll be there for ya!"

In the end, when I asked the psychologist point-blank if he was going to actually assess my kid he said no. "Again, these are really medical issues, which you need to address outside the district. You said you have private insurance?" In retrospect, I know that that's bullshit, and I'm thinking that what I might do is to sign the assessment plan (after all, I do want the OT and speech assessments, and I want them done NOW) but attach a note that says that I believe that the lack of social/emotional assessment will be detrimental to my child's overall progress and that not considering those issues will be setting him up for academic failure. (I have a huge book on special-ed law that a special-ed maven/friend of mine from the school loaned me, and it will only take a short while for me to be able to cite chapter and verse from it with regards to their responsibilities in this arena. We'll see how I feel when I get the official version of the plan from the school.)

There was also a lot of commenting about how smart N is. Which, again...Sounds nice until you remember that these people tend to base--or try to base--their decisions on academics. And if he's doing OK in class...then what's the big worry? Luckily, his teacher was fairly vocal on the ways in which his emotional issues (she called them self-esteem problems, which breaks my heart, but again...I'm not going to complain about the verbiage. I just want results) are affecting him in the classroom. So you'd think that's good, but...I don't see where this assessment is going to deal with that. Unless the district OT program is a good, broad one that goes well beyond working with him to cut a straight line and draw a recognizable human figure. Which, if you know school districts, is so unlikely as to be freaking hilarious to even consider.

Like I said, I got a feeling that everyone (except maybe the psychologist) thinks there are problems, and thinks he needs help. I got this feeling especially from the speech therapist, who I just...I don't know. She seems really smart, and she seems to get what I'm talking about--she was the one who had referred him to the preschool assessment team back in 1995 because she thought he needed to be evaluated for an ASD (autism spectrum disorder). But at the same time, she seems desperate to NOT be the one to help me. So she did a lot of telling me how she didn't think he was going to qualify for speech, but at the same time kept making clucking noises about how he seems to have sensory integration issues ("Make sure he gets an OT assessment," she kept saying to the special ed teacher who was leading the meeting) and how the fine motor delays he seems to have ("See why he needs that OT assessment?" she said again) fall into the same sort of category with the sensory issues, and how that could affect speech...BUT that she thinks his articulation falls within reasonable levels. Which...she might as well have just said, "Look, I think he needs help, but I'm swamped as the only speech therapist for like three or four area schools, and I'm doing whatever I can to avoid having new kids assigned to me unless they're mute." At least then I would have known where I stood, right?

My favorite moment (and by favorite I mean the moment I most felt like hurting someone but was glad I held off when I watched their faces as I spoke) was when the special ed teacher, noting my not-so-positive response to the idea of getting N into the care of psychiatrist for social anxiety, said to me, "I know how you feel about medicating a child; many of us would feel the same way. But, really, if you think about it, if he had diabetes..."

I didn't even let her get CLOSE to finishing that sentence before I cut her off. Now, mind you, I was smiling through this whole meeting, from start to finish--friendly and eager to please and almost physically incapable of being truly contentious, even knowing that what I really want is for them to fear me. (Shit, I actually volunteered to edit the school's reapplication for California Distinguished School status--I worked on the original, successful app four years ago--while we were waiting for the speech therapist and N's teacher to arrive. Eager to be liked, much?) So what I said probably didn't sound as harsh in person as it does here. Or maybe it does. "Listen," I said. "I've written about mental health...I've written a *book* on mental health, on bipolar disorder, and I USED that EXACT example. I WROTE that exact example. I get it. But I'm not putting my kid on drugs until I'm absolutely certain that I've exhausted all the other avenues--and until I'm certain that that's the problem. And I'm not certain of either." And I smiled sweetly. And she shut up.

But it was a small victory in a day of what felt like much larger...non victories? I don't know. I think that's the worst part of this process. Being new to it all, I don't know where the traps are. I don't know what victory looks like. I don't know what failure looks like. I don't know what I did or did not achieve today, and I don't know how what I did or did not do, said or did not say, is going to affect what happens in two months from now, when we have our actual IEP meeting. I've gotten tons of fabulous advice about dealing with special ed, much of it from people reading this blog, but almost none of it was able to help me make heads or tails of the subtle undercurrents of what was going on in that room today between the five of them and the one of me--the only one focused solely on the needs of the little boy watching Spongebob and waiting for Mommy to come home and help him do his homework on odd and even numbers and quiz him for his spelling test on Friday.

7 comments:

kristen said...

Yes. Wow. Okay. It is a tricky thing to navigate, isn't it? Every state, every district is different, so not knowing much about California law and your district in particular, I don't have much in the way of solid advice for you.

I will say that as you do more of these meetings, you will get more comfortable with all the ways in which they try to say "this isn't our problem." But hang in there.

You are definitely doing the right thing for N. Good luck!

po said...

Ugh, gak, yeah, I think you got at least slightly screwed. I don't understand the psychologist saying he wasn't going to do an eval. An IEP eval is supposed to include a psychological battery, to ASSESS the child. And all of his talk about this being a "medical" situation is completely inappropriate, because a) he didn't assess N; and b) he does not have the MEDICAL qualifications to make such a pronouncement. That is utter bullshit.

I also don't understand them wanting to only do an OT assessment (till you basically shamed them into committing to an OFFICIAL speech assessment. The whole "informal" thing chaps my hide. We got so so very screwed by that during Matthew's first IEP assessment. He was "informally" evaluated in a room by the psych. and speech therapist, who thought he was "fine." Since OT is not a stand alone service, at least it wasn't in CA back in 2001, when that was the only service they felt Matthew qualified for, he got nothing.

Yes, I'm sure they were very nice. And I'm sure they honestly want to help N. And I'm sure they think he's smart (because of course he is). And I know they are the gatekeepers of the limited resources available, and they have to make choices about allocating those depressingly limited resources. OMG, just wait till you start tangling with the people from the school district who administer special ed, because they are REALLY the ones who have to keep a tight fist around resources. BUT.

You can be sympathetic to their situation, and appreciate that they are nice people who honestly want to help children, but this is YOUR CHILD. If it was the psychologist's child, you can bet he'd be swinging for the stands to get every single possible service.

So did they actually schedule anything? Just call me if you have any questions!! HUGS!!

Elizabeth said...

No advice, but hugs. This is hard.

Green said...

Many things.
1. Can N sit outside the room? Pack him a coloring book and gameboy or whatever and have him sit outside your meeting so your husband can be there. This is AWFUL, but my mother found, even as a teacher with a background in special ed, that the school district was more responsive when she had her husband in a suit sitting next to her. I'm just saying.

2. My response to their diabetes thing would be "Wouldn't you treat diabetes with diet before it gets to the point that it's so severe diet makes almost no difference and the only thing that would help would be NEEDLES with medication?" Because really, how fucking stupid do they think you are that they try to get you to fall for that one?

3. I am friend with a kiddie shrink. He's in NY. I think N might benefit from one of those. How much fun could N be at a friend's house if he just sits like a lump on a log? Wouldn't it be better if your son were comfortable and could run and create messes and do whatever else little boys do when they get together?

4. I'd sign, and write "Signed under duress (sp?) due to lack of eval/services for ______."

Tamar said...

Urgh, yes, I think you got screwed. It's hard to know, because we never got that level of run-around, but I have some tentative thoughts. Let me know if you want to hear them.

Ambre said...

She school psych is an ass.

There's no victory in these things. How can there be a "victory" when you're fighting people who are supposed to be helping your child? It's always a defeat, because you leave realizing that the people entrusted to care for our most in-need kids really are just trying to avoid extra work.

I will say that the ST is probably very unexperienced at handling pragmatic/social issues and *might not even realize she is supposed to know how*. How sad is that?

Did I mention that the SP is an ass? The next time he or the sp.ed. teacher mention social anxiety say "ok, how many children do you know who were born with social anxiety? because he has been this way since he started interacting with others. Exactly how do you define a developmental disorder if not... you know, a disorder of development?"

Ugh, people being mean to my babies. I want to hurt all of them :(

Poor TC. Pat pat, it will all be OK.

Mary said...

School districts are such a pain. We live in one. My kids go to private school in another, but have to be evaluated in this one if they need services. At various points, I have asked for all three kids to be evaluated. And all three times, they have resoundingly turned me down.

I have been told by many teachers that in the district to the north of us, or the one to the south of us, kids get services based on a teacher's recommendation. But in this one, they're trying to save money, apparently, and you have to show the kid is already failing before they'll do anything. So frustrating. I feel for you. Hang in there.