Monday, May 11, 2009


During my meeting with N's teacher today, she told me about how pleased she was with his advances since he's begun the OT social skills group. She mentioned, as an example, about how when one of the boys in the class was giving N a hard time the other day, instead of putting his hands over his face, shouting "No, no, no, no, no," crying, and/or essentially shutting down completely, he instead wrote a note to the teacher to say, "I am mad at K. I don't like what he did." And, later, she said she heard him tell K, "I don't think I want to play with you any more today," instead of just hiding himself away from everyone on the playground during recess.

During my meeting with N's teacher today, we agreed that this was huge, and wonderful, and a perfect example of why he needs this group so much, and how much good it will do him to stay in it.

After my meeting with N's teacher today, all I could think was, "What the...??? What did K do to him? Are kids already picking on him? Why doesn't he tell me about this sort of thing? I'm gonna kill the little fucker who picked on him..."

During my meeting with N's teacher today, we talked about how hard it is to pin down a diagnosis, a label, even a good idea of what his learning differences ARE so that they can be addressed. I was asking her for guidance. I wanted her to tell me, from what she's seen, which avenue I should be pursuing when it comes to further evaluations for N. She agrees that it's likely his speech therapist will dismiss him soon, probably at the next yearly IEP, next January, and that we need to come up with something else that will qualify him for special ed, and she's not quite sure what that is. But she did tell me that she'd recently spoken about N with the school's principal, and that there may be a way in through an ILP, Individualized Learning Program, if he does as poorly on the statewide testing as we assume he will. Apparently, an ILP flags a kid as 'at risk' of being 'left behind,' and normally would prompt an IEP. Of course, since N already HAS an IEP, it might instead prompt a reevaluation of that IEP, since the low test scores would indicate that the IEP is not optimally effective quite yet.

(Clear as mud?)

During my meeting with N's teacher today, I was feeling optimistic about that idea, hoping that it might provide a way in to a more appropriate special ed placement than having him in speech therapy as a way to get him occupational therapy.

After my meeting with N's teacher today, I again began to think, "What the...??? Why have I never heard of an ILP before? How does it work with an IEP? Will it help me at all? Have any of my special ed Twitter posse a clue about all this?" (The answer to that last one: No. Which makes me suspicious. And there's almost nothing I can find about it on Google, either. Which makes me even MORE suspicious. Though I have no idea what I'm suspicious OF.)

During my meeting with N's teacher today, when--as I mentioned above--we were discussing the difficulty in pinning down just what we're dealing with with N, I told the teacher how I've always thought it would be so much easier to advocate for him if I could just know what the root of the problem is. Is it anxiety? ADHD? A learning difference that causes anxiety and/or ADHD? She agreed with me, but couldn't shed any further light on it. "In my 16 years of teaching," she said, "I've not come across a child exactly like him. I can see pieces of him in other students who had easily definable problems, but not enough to say that any one of those things is IT."

During my meeting with N's teacher today, I felt an absurd swelling of pride when I heard that. I think we all like to think that our child is special, unique, one-of-a-kind.

After my meeting with N's teacher today, every time I thought of that same statement, I wanted to cry. One-of-a-kind began to feel like needle-in-a-haystack. Unique began to feel like unknowable. The emphasis on special began to give way to an emphasis on needs...needs I don't know how to fill.

During my meeting with N's teacher today, I felt hopeful. If nothing else, he has some pretty amazing people on his side, as evidenced by how much this teacher cares about him.

After my meeting with N's teacher today, I'm finding that hope a lot harder to sustain. I just don't know if having amazing people on his side will be enough, if none of them have any answers.


joannawnyc said...

I would just say that ime it has gotten better as my own special, wonderful, unique, nobody-can-figure-out-exactly-what's-wrong-with-him kid has gotten older. But early elementary was quite hellish.

goodfountain said...

Very nice post - really captures the ups and downs we all feel.

I wonder if an ILP is kind of like a 504 plan? Are you familiar with that?

TC said...

Goodfountain...No, I think it's supposed to be something more specific, a plan for how the specific academic shortcomings will be addressed, and whether they require special education. N already has 504-type accommodations in his IEP...tons of ' I think this is something else. What exactly it is, though, I have no idea! All I know is that she said they don't kick in until the kids begin state testing, which is in second grade...i.e., they don't flag kids as at risk until the beginning of third grade. And 504s can start at any age.


Tamar said...

Haven't heard of an ILP either.

My thought: why is the SLP likely to dismiss N from speech? Are all his speech-related IEP goals dealing with articulation issues? Because D has had speech for years w/ absolutely no articulation problems to work on. Pragmatics, volume, pragmatics, prosidy, and did I say pragmatics? Does N carry on a conversation the way other kids do? Does he respond appropriately? Does he pick up on others' cues? If not, pragmatics ho! D is in group speech for exactly this.

(And yes, we still bring him into school for speech/OT/counseling even though he's homeschooling. Love that! Hope it continues in the fall.)

Meg said...

So happy to read about the progress N is making. In our district, kids at risk go for "extra help" called Achieve without having a specific IEP. One of my kid's had an IEP for speech, which he then outgrew but later went to Achieve for writing and one went for reading. There was some sort of learning plan and evaluation. I have a feeling the ILP is something similar. It may have no basis in law, like an IEP or 504 plan, but is the school's way of getting help for kids that don't meet the very stringent special ed requirements.

As for N, the issue may be that there is not one big thing, but several more moderate issues that together create a bigger issue. One kid I know has both dysgraphia and ADD-Inattentive. Neither alone is significant enough to allow for an IEP, but together create problems for him in the classroom.

Ambre said...

I doubt an ILP is going to help him, because of those OTHER numbers we were talking about. It's been a year, demand a retest on that.

I'll repeat my suggestions that you'll still ignore.

1) OHI (other health impaired)
2) Assessment by autism specialist who could possibly pull a PDD-NOS out of his ass. USC? Tamar could give you names.
3) Definite possibility of ADHD-inattentive with anxiety issues. I am betting you could get this based on recognized ADHD assessments (check out these questions:

And I'll repeat my saying that none of these will tell you who N. is, all they MIGHT be able to do is write some papers that will keep him in services. Any approach to a diagnosis needs to be entered into with a firm understanding (which I know you have, but I think you fear others will lose) that a child is not a diagnosis. If he is diagnosed as ADHD or PDD or ZQP (I just made that up) tomorrow, he is still N. just like he was yesterday.

Ambre said...

p.s. even still he won't get academic help until you get the other stuff fixed (and if I sound cranky, I am, but at the system that's making you go through this, not at you).

Ambre said...

Tamar, with D's diagnosis, speech would be automatic in most districts because it's part of the accepted protocol. Without that piece of paper signed by a doctor, speech is generally for kids with articulation difficulty :(

Ambre said...

And p.p.p.s.

504s are generally for accomodations, not services. So they'd say he could sit at the front of the class, might even give him special testing procedures, but unless some districts do it much differently a 504 won't fund OT, social skills, speech, etc. I think I'm done now. Maybe.

Ask me another question so I don't have to figure out how to do radio buttons horizontally with CSS.

po said...

I agree that ILP is probably something at your district level, so that's why no one else knows what it is and there's no online info. And I also don't really see how it would be that different from the accommodations he's already had. Without services to address disabilities, accommodations can be helpful at alleviating short-term stress, but they certainly don't get to the root of the problem.

And yeah, we think it's nice to be unique and special, but you do NOT want your kid to be special in certain aspects. It's never a good thing to hear a neurologist and a psychiatrist tell you that your kid is "so interesting." :(

Hugs! MORE testing!! MORE assessment!! It's honestly the only way that you are ever going get a dx, and from everything I've seen, almost nothing happens till you have one. Till your kid is in junior high and punches out the assistant principal, as I've seen in the case of one of the kids at school :(.