Friday, November 2, 2007

Struggling

I'm having a hard time finishing up that letter to the school district about N's evaluation.

It's not that I don't know what to say, it's that I'm not sure how much I want to...lie is a strong word. Exaggerate? Dissemble slightly?

Here's the thing: There is a woman at our school, a woman whose son is on the spectrum and in special ed (though very much mainstreamed into a general ed classroom). She has become so consumed by this process that she is now on the district's special ed advisory board. Rather than having me pay an advocate, she has taken on sort of 'mentoring' me. She is a WEALTH of knowledge (you should have seen--or, rather, FELT--the box of information she handed me when we got together the other day to talk) and a very strong personality. Perfect for an advocate, actually. I would not be at all surprised if that's what she eventually ends up doing in her life.

I sent her a draft of the fleshed-out letter I wrote up the other night, in full panic-and-stress sweat, angry and nervous and unsure of what was right to say. She made a bunch of changes, suggestions, no more than that. She thinks I really need to push for an autism-spectrum diagnosis, or at least to push for the sorts of assessments that would lead to an autism-spectrum diagnosis, in order to get the information we both think I'll need to help N be successful in school. That's all well and good...except I am almost totally certain that he is NOT on the spectrum. And saying, "I think he's on the spectrum, thus you need to do the following tests" feels...deceitful to me. Put a little more positively, it would just be fighting fire with fire--stacking my deceits, aimed at helping my son, against their deceits, aimed at avoiding spending money on helping my son. Do the ends justify the means? And, really, if you think about it...Who am I to say he ISN'T on the spectrum? If pushing the symptoms that are spectrummy (and he has them, though some of them are fading quickly) to the forefront--even if they're not really forefront issues right now--will help, is it wrong to do that? Do I owe these people perfect forthrightness? Don't I owe my son more?

And have you ever seen a paragraph that more defines the words "self justification" than the one above?

There's also a lot of entitlement in what she wants me to ask for...which is a problem I have. I do not have a huge sense of entitlement--or, perhaps, just not one huge enough for the battle before me. But that I might be able to muster. One of her other main points--that I should insist on having people from the district level involved in and attending these assessments and IEP meetings--seems to me to be almost asking for too much attention for a child who is clearly at a lower level of need than many of the other special-ed kids. I worry, somewhat, that bringing in the people who see the full spectrum of what is in the district will backfire on me, make N's problems seem even more insignificant, and even less worthy of services. I just don't know.

So, I'll be spending part of this weekend tweaking my original letter complaining about the assessment process, and adding in those of her suggestions I feel could possibly have come from my mouth, and finding out the addresses of the people to whom I will be sending it. (In that, this woman's help has been absolutely invaluable...She gave me the names of the key personnel at the district level to whom I need to level the complaints I have about the way the assessment meeting went. And THAT I have no problem doing. Because that meeting was fairly atrocious, and I want blood.)

Wish me...not luck. A cool, calm head. And the ability to walk the line of morality and advocacy so as to achieve the best end possible.

6 comments:

kristen said...

I will just say this: follow your own heart. Stick to your own level of comfort.

There will always be someone admonishing you to do X or to ask for Y. It's tricky. Very tricky.

But if it doesn't feel right, it probably isn't.

I hope you have a positive result from this letter to balance out the negative you are feeling. Sometimes it's just a little thing that can turn everything around.

As parents we just want to feel like we're all on the same team, working to benefit the kids.

Why does it have to be this hard?

Tamar said...

I just wrote a long comment but Blogger ate it. Grrr. The gist was: I think this other parent is absolutely right. An ASD dx will give you legitimacy and may get the district to snap out it. At the very least, it's a great weapon to have in your arsenal. Trust me on this.

Also, N fits the criteria. Look it up in the DSM IV. Speech/communication issues? Check. Social issues? Check. Sensory issues/stims? Check. He may be really really mild, so mild that he can wiggle right on and off that spectrum, but the point is he CAN wiggle on. And he DOES need the help. You are not faking it. I've met kids with AS or HFA who are less impacted than he is, so no specialist in their right mind will laugh at you for suggesting they look at a spectrum dx.

Email or IM me (or call!) if you want to talk this over, chew me out, whatever.

Green said...

See, the thing is, it's not about that N isn't retarded, thus he should get less services than the retarded kids. It shouldn't be like that. It should be that N gets whatever services help him reach his highest potential. Period.

Also, the way physical medicine works is you run tests to rule things OUT and then have a diagnosis based on what's left. This is mental medicine - might as well work the same way, right?

Thus, might as well phrase it however you have to in order to get N whatever he needs in order to be the best N he can be.

I would however, be cautious of when you pull the "I wrote a book and know my shit" card, because you don't want to get eye rolls for that, but "Oh yeah, she knows her shit" nods.

FWIW, my mom was on that IEP committee in NY while I was in public school - she felt it helped her get stuff for me, as she made friends with the higher ups who held power.

po said...

First off, have that mom at your IEP meetings. You get a parent advocate, and she sounds like an awesome one. Sure, she's forceful, but if there's one thing I learned the HARD way (and continue to learn the hard way), it's the squeaky freaking wheel that gets the fricking grease. I HATE HATE HATE this, but it's the reality.

I really don't see the downside of asking for a ASD assessment. Actually, he SHOULD get a full psych assessment, that would dx ASD if that's what it diagnoses. Just because he was assessed when he was much younger and wasn't found to have ASD doesn't mean that with a really good, really thorough psych screening now, at his current age and at his current state of development, he wouldn't be dx as ASD. Or maybe it will dx something else. The point is you NEED that very thorough assessment, and you are ENTITLED to it. So say whatever the hell you need to say, in order for them to do it.

Hugs!!! Now is not the time for treading lightly.

Ambre said...

Of course he's on the spectrum.

You're just not sure where yet ;)

Remember, it's a spectrum- is he on the diagnosable side or not? Well his scores in standardized assessments of social skills have pretty clearly shown significant social deficits. He has the pragmatics issue. He has chewed holes in his shirt and pulled his hair out. I'd think there is something in there that qualifies.

But you know I've been pushing some alternatives that you've been protesting mightily. OHI, Other Health Impaired, is another diagnosis that would qualify him- I really really think you should consider getting an evaluation by a doctor who could assess him for genetic issues. The autism spectrum like issues on top of the short stature, hernia stuff, etc etc might be part of some genetic syndrome that actually has a name or at least a number.

po said...

The other thing I wanted to say was please, please, don't say to yourself "well, this and this was a problem, but he's better now." It is not always a linear progression. Matthew was so much better, year by year, and then boom, much much worse. So you can't discount "past" issues becoming present issues again.