Evaluate This

I'm not going to mince words. Today sucked ass.

Fortunately, I've moved beyond tears into anger, which is a far superior place to be.

Yesterday was Ellie's Individualized Family Service Plan (IFSP) 6-month review. Twice a year, the program director at Ellie's school, each of Ellie's therapists, her state early intervention service coordinator, Paul, and I all get together. We go over Ellie's progress over the past 6 months toward achieving the goals we set last time, then we set new goals for the next 6 months.

Yesterday's meeting was our last IFSP, because Ellie is in the process of transferring out of the early childhood program and into the school district. From her third birthday on, Ellie will receive preschool and therapy services through her school district rather than through the First Steps program. This transition involves a lot of meetings, a lot of paperwork, and a LOT of evaluations.

I expected it to be painful.

I didn't expect it to be this bad.

Yesterday's meeting went very well. Ellie has made incredible progress in all areas (speech and language, gross and fine motor, adaptive/self-help skills, and cognition) recently, and it was, frankly, fun going over her progress with her team. We have a good team. Things are going well. Time to upset the apple cart.

We were at the Special School District preschool evaluations office for 4 hours today, and Ellie did fantastic. She was in a good mood and she was compliant, but she also showed all sides of her typical personality so that the evaluators could see this is what she's like when she's frustrated, etc. She was amazing and the evaluations process seemed to go very well, though Paul and I couldn't watch most of it. We were in the room next door being interviewed, one at a time, by each of the 5 members of the evaluation team. That wasn't totally fun.

The team went aside to talk for a bit, then came in to go over their report with us. (We'll be receiving a copy in the mail in a couple of weeks). In reverse order, we heard from the speech pathologist, the PT, the OT, and the school psychologist. The evaluations of Ellie's speech/language and motor skills were perfectly aligned with what we're seeing at home and what Ellie's current therapists are seeing. The delays found were unsurprising, and we were pleased that she qualifies for speech, OT, and PT through the school district. We were also pleased with how positive the evaluators were about how Ellie's doing, how far she's come recently, and how she's likely to progress in the months to come.

But first we heard from the school psych about Ellie's social, behavioral, adaptive, and cognition scores.

It's worth noting, at this point, that Ellie's current preschool teachers tell us how well she keeps up in the classroom, mostly full of typical kids (there's one other little girl with Down syndrome). Her Developmental Therapist, who sees Ellie at home and at school and is a former special ed teacher and school diagnostician, tells us that the only thing that keeps Ellie from participating fully in class is her occasional stubborn/defiant behavior. We haven't had any real "cognitive" goals recently because she met the big one: plays appropriately for her age and with other children in the classroom.

So this school psych evaluator woman tells us that Ellie has moderate delays in adaptive behaviors/motor. Yeah, we know that she's nearly 3 and isn't fully potty trained yet; can't dress herself, and still sticks out her tongue when she drinks from a straw, etc. No surprise.

Social Interaction and Communication: high score.

No behavioral delay.

As far as cognition, here's what she can do (all according to the school psych):

• match colors
  
• label pictures
  
• age-appropriate puzzles - though a little slow
  
• put pegs into a pegboard
  
• understands pronouns
  
• discriminating between objects
  
• interest in listening to a story, pointing out pictures that go with the text, making animal sounds, etc.

Now for the verdict. Ready?

Severe Delay in Cognition.

WHAT THE FUCK?

I'm a bit flummoxed, of course, so I incoherently press for more details. Well, she can stack 5 tiny blocks. She should be able to stack 6-8 of them.

Um, OK. That's more fine motor than anything else. And a one block deficit is so totally not SEVERE. WTF?!!!

She gave Ellie a developmental age of 21 months, which is also totally hogwash. I know 21 month olds. I see how they play. They are more into pushing a car and throwing a ball then they're into ordering, phase 2 in imaginative play. For example, Ellie loves to give her doll something to drink, then undress her and put her on the potty, clap for her, wipe her, then put on a diaper. This, for the curious, is very age-appropriate play for a 34 month old.

I know there are delays. I am not hiding my head in the sand here.

Still. I also know that there are lots and lots and lots of kids who are much much worse off than Ellie. And I know that "severe" doesn't come close to describing this kid who can play Hi Ho! Cherry-O and talk to the baby she can't see but knows is growing in mommy's tummy.

So. I don't note a severe delay in Ellie's cognition. Ellie's current developmental therapist doesn't note such a delay, nor do her classroom teachers, nor her grandmother, who's also an elementary school psychologist who does this evaluation stuff for a living. Ellie's pediatrician, who specializes in kids with Down syndrome and has one of her own, is convinced that Ellie does not have severe (or even moderate) cognitive delays.

This is how I've moved from the tears to the anger. The eval was wrong. Flat wrong. Worse, the scale was off (Mom explained the scales to me, and I suspect this particular interpretation has a lot more to do with the Special School District drumming up business for itself by qualifying kids for more services). And the instrument was faulty.

My mom's school district only uses this particular test with kids who are totally non-verbal and there's no other way to test them. (Note: the ceiling on Ellie's single-word vocabulary was 3 years and 11 months; not quite "non-verbal" but rather a whole year older than she is.) My youngest sister was evaluated with this tool when she was 6 months old.

So I'm even working through my fury.

But I'm still a bit sad and mad and depressed that it looks like I'm going to go into Ellie's experience with the school district having to fight for my daughter, when I was hoping against hope that we could all just get along.

And at the Individualized Education Plan (IEP) meeting in a few weeks, if they come back with ugly words like "severe cognitive delay" and want a ridiculous amount of apart-from-typical-kids time for Ellie, I'll be ready to go to bat, threatening a lawyer and demanding that she have a new eval by a new evaluator, and refusing to sign the IEP until it accurately reflects the needs of the daughter I know and love so well.