Saturday, November 17, 2007

How the Assessment Went

Oh, you mean ASIDE from the fact that my kid was drunk? (No, not really, PnP. Chill.) THAT kind of how it went?

It went...Well, wait. How do you determine whether an assessment went well or not? If by 'it went well' you mean they looked at him and looked at me and said, "Pish-posh, nothing wrong here. You're overreacting. Your son is fine. Go home and he will magically be like every other kid, because we said he's fine, you silly," then no. It did not go well. They didn't say anything like that.

But if by well you mean they listened to what Baroy and I had to say and remembered everything I'd said on the phone and then went and spent time with him and came back and told us that yes, everything I think is wrong is really wrong (and I mean REALLY wrong), then yay. It went swimmingly.

There's a report coming that will have words in it that will help me make more sense out of that whole experience. But I can say that there was a lot of 'stuff' we talked about that gave me plenty to mull over in the meantime: Like recognizing that N's deficits are REAL, but they're not in areas that are easily quantifiable, and thus don't show up easily on measured tests, and that's just the way that is. (When you can't pronounce words, that's quantifiable; you can literally count the sounds a child can or cannot make, for instance. But when you have trouble taking your thoughts and translating them into appropriate sentences, that can't be measured.) So it's going to be fight. Like recognizing what 'winning' that fight means at the district level--i.e., I can fight and fight to get him into speech therapy, and I will likely get there with this assessment report in my hand, but that the school-based therapy/therapist is, oh, let's be optimistic and say it's unlikely she will be able to appropriately address his issues, no matter how much therapy she gives him, because this is not her area of expertise. Like recognizing that he is not, not, not likely at all to get an autism spectrum diagnosis (because he's not autistic...or Asperger's...or PDD...and I know that), and how that is not supposed to make a difference (you're not supposed to need a label to get services; you're just supposed to have a demonstrable need, and he does), but that it might. Like recognizing that there still may not be an umbrella label for me to use as a guide through all of this, but that that doesn't mean there isn't a problem. There's a problem.

But, oh, how intense it was to watch professionals at work, and to really see how someone who knows what they're doing can just zero in on an issue and lay it out there. Even *I* had never seen the basic issue laid out there quite so baldly before. (And it was done in such a 'duh' way...so simple. She read him a book, then asked him to tell Baroy and me the story. Even with the book in hand to remind him, he couldn't even come close to making it make sense. "It was dark, and then they...Boom! And more of it. And then he was sick.") Equally fascinating--if fundamentally upsetting to see him that way--was watching N's body while he was doing this task. He was literally bouncing off of the couch, off of me, off of Baroy. Sitting, then jumping up, then switching positions, then throwing his hands in the air, then...It was exhausting and stressful just watching him. Pure anxiety in motion.

Perhaps the most interesting thing the lead therapist (the woman who owns the practice, and who N declared he's going to marry when he's a grownup) brought up was the classic chicken-and-egg question: N has language problems. He has social issues. He has anxiety. He has sensory issues. But which came first? Did his developmental delays in speech lead to his being anxious about interacting with other children, who he has trouble communicating with? Did his anxieties about interacting with other children lead to a delay in speech? Are his sensory issues causing him anxiety? Does he have sensory issues because he's naturally anxious and he uses sensory input to calm his anxiety?

In the end, this isn't going to be critical, but I do wonder in which order these things developed. Because, to some degree, it would help me to know where to start, which angle to attack things from. When you have limited resources of time, money, whatever, it's best to use those resources to attack the root of the problem, rather than just one of its branches. But what is the root?

One thing I am now positively going to INSIST on going forward, though: This kid needs some kind of well-thought-out sensory diet, and he needs it to be implemented at school. After the disaster of the story-retelling, N jumped up from the couch and started telling the therapists to watch how far he could jump; the woman who was interviewing Baroy and me 'made him' jump back and forth across the room three times, and got him to do it in froggy jumps. "He needs that right now," she said. "He just did something that was so hard for him. He needs to let go of some of the anxiety."

Of course. Of course he does. And this is what he must feel like all day, every day, at school. I knew that, but I'd never seen it so clearly before. Of course he needs that. He's being asked to do things all the time that are damned near impossible for him, and he pulls them off, and then...he's asked to do some more of them. And to be quiet about it. And to stay in his seat while he does it. It must be torture. Last year we tried to address that to some degree by getting the teacher to allow him to chew on straws so that he wouldn't chew on his shirts. But now it's time to get accommodations like that written into an IEP or a 504 Plan, if we ultimately fail on the IEP front.

So, um, yeah. That's how the assessment went.

5 comments:

Meg said...

Oh TC, I am sorry it is not a straight forward, here's the problem and here's how we fix it. Know that you are not alone. Hopefully, there are things that can be done (in school and out) that will help. I hope the report is more enlighting.

Scott said...

Have you looked into Stanley Greenspan's DIR model. It really gives an outline for any plan of attack, in that it comprises: 1. a developmental component (D); 2. an individual differences component (I); and 3. a relationship-based component (R). All three components are incorporated into a treatment plan.

Leila said...

Damn, I should send this via email rather than in this little box but...

First, I hope you now have a thread that you can pull out to start to unravel the cocoon of problems...

Next I hear 'ya on the physical mouvement after stress... We've called gym AC's pacifier, since it is what allows her to work out all the school stress.

Last, I can imagine that it's going to be difficult to deal with the whole school/IEP/district etc, but it sounds like you are starting to get a better handle on the issues, and hopefully that will help you propel them in the direction N needs.

Take care and loads of hugs.

Ambre said...

I'll chat with you later, but did they say why he won't qualify for any sort of PDD diagnosis?

It makes no sense to me. "He has social and language delays, stereotypic behavior, and sensory problems- but he won't qualify for a PDD diagnosis." That's about as pervasive as it gets.

Were I you, I'd have him assessed at one of the university autism centers to be sure. I know UCLA and UCI have them. Even a PDD-NOS diagnosis is something.

Because part of understanding that autism is a spectrum is realizing that a child can be quite clearly "not autistic," and "not have AS," and yet still be placed on that spectrum, somewhere.

Tamar said...

What Ambre said. At the risk of repeating myself (well, knowingly repeating myself), N has sensory/social/communication issues. He fits the definition, dammit! And, as they told you, the label is USEFUL. An outside dev. ped. (esp. the one we talked about) would have less hesitation giving you the label you need, I suspect.

And honestly? I've seen so many kids with such varying manifestations, I no longer know what HFA/AS doesn't look like. Because what it looks like varies wildly. With certain shared issues, yes. But he has those. He is simply presenting them differently from most kids. Doesn't mean the definition can't fit.

Stepping off my soapbox... the assessment sounds excellent. Very on-target and useful about his specific areas of need.