Thursday, November 03, 2005

Why am I on the odd side of this issue?

It seems that Eric did fix our internet issues! Originally we thought it was our external modem on the fritz. It's not. Its gremlins, or some other such mysterious issue. In any event, I am connected to the nexus and not complaining. Well...complaining about that...or the fact that the "a" is sticky on the laptop...and it hampers my typing flow. This is equally, if not more annoying, than the possibility of not having the internet over the weekend.

I had a meeting this afternoon with Owen's literacy and homeroom teacher. It was about his specialized education program. He works with two literacy teachers. I had not yet met this particular teacher before. It always makes me uneasy to meet someone that I have never heard of before, who acts like she knows my kid really well. (and this was the first time I even heard her name). There was the implication that she worked with Owen enough to be form an opinion on, and formulate his education plan. This freaked me out.

These meetings are pretty routine for us. I go, they discuss the goals that they have set for Owen, we discuss any concerns or strategies, and then I we home. Today, I nearly fell out of my chair. The literacy teacher said something about "kids on the spectrum"...meaning she was referring again to autism. I felt my chest tighten, and I stopped listening. That was my first response. To be truthful, I am getting tired, bored even, of rehashing this story. To offer the Readers Digest/Coles Notes version, after months of evaluations and tests by numerous doctors, specialists, psychologists and psychiatrists, Owen was never clearly on "the spectrum" or not. He is a quantum phenomena. It really depends how you look at him. At the same time, my opinion, my observations and my views were dismissed by a couple of those "professionals", which greatly offended me. Please, don't expect me to accept the fact that Owen has gross motor delays from a phd grad student, especially since he has been successfully climbing trees and riding his bike since he was 4. I don't need a physiotherapist to back up this conclusion. I can come to it quite on my own. And yes I know that some kids "on the spectrum" have gross motor delays, and I am not trying to refute the existence of an autistic spectrum, but I will say this: If you look at my kid through an autistic frame of reference, you are going to see all kinds of things. Whether or not autism is at the root of this, really remains to be seen.

These people, sitting at the minature table and chairs don't have the time to hear my long and complicated story. I can appreciate that. I don't have a problem with their special learning plans either. I am not there to make their lives any more complicated than they already are. I feel that Owen is getting an excellent education and I am involved in every way with him. When the teacher mentioned PDD (again) and I interrupted and explained (again) why his pediatrician and I agreed to allow it to remain on his medical records - because we were afraid he would not get as much assistance that he could without it. Our pediatrician told me that he would not recieve speech therapy at school were he labeled with a mere "Developmental language delay". She seemed to hear me, but ten minutes later, she said something to the effect of "Kids like Owen on the spectrum". Being the Mama Grizzly like I am, I politely asked her to refrain. Again, I did not feel "heard", or respected. I could feel the conversation tense, and there was a subtle shift in her body language and facial expression. I suppose, were I sitting in front of a mirror, I would have noticed this with myself.

All I wanted was to discuss Owen, not about generaliztions, and not make comparisons to a bunch of nameless faceless kids that I have never met. I tried to salvage the conversation by apologizing for my abruptness, and alluded to my own anger around this issue. I am not sure if she appreciated my position, but she did not try to push it, or try and convert me.

This is when I admitted that my views are unconventional, and I was not trying to undermine anyone's efforts. I fully support the work that they are doing, and did not want that point to get lost in all this. I also had this poignant moment, a bit of a soliloquy where I spoke rather eloquently, and at legnth. It's rare for me. I think its safe to claim that I bumble, and I ramble, mutter, and stammer. "Eloquent" is hadly an apropos description of my public speaking skills.

So in my moment, I tell them that I am quite aware that I take an unusal approach. And that I know that Owen is an "exceptional learner" and he may never be where he peers are. I said I was quite fine with that possibility, and added that Owen is an engaged learner and has a passion for learning. I did not feel that it would be in his best interests to compare him to other kids (on the spectrum or not). I did not want to feel that he ought to be anywhere else but where he already is. I felt that it would do his developing sense of self no good to be constantly told that he was below target.

The meeting ended without much issue. I came home feeling rather spent. It's hard being on the weird side of an issue. Sure, it would be so easy for me to accept and go along with what everyone says. I don't feel that I am a contrary person - or the sort that always has to argue a point. Going with popular opinion on this one just feels so deeply wrong to me. I can't possibly deny that. I've spent so much of my time and thought thinking it through. Today was the first time I doubted myself....its been a very long time since I felt like that. Actually, I felt completely insane. Why the hell am I standing for this? Why am I on the odd side of this issue? Why not just take the easy way out? For a second I thought maybe this was just a habit - I was standing up for this because its more about being on the odd side of an opinion that what the issue is really all about. I thought about this - and yes, there is a smidgen of truth here. I do find an incredible amount of meaning insisting that I am weird. I'd rather be weird than normal. But then I rolled the thought in my head a bit more, and on so many other levels, this is the right approach for Owen and I. It's what works for us. It helps more than it hurts. It's more than about defining me as a raving lunatic...its about the way that I have taught myself how to conceptualize and likewise treat Owen. Its all critical stuff.

Good thing my internet access is back. I needed this space.

I think I am going to write a legthy detailed letter about my point of view, and ask the literacy teacher to stick this in his file. At least when there is a change of personnelle, my voice will be heard amongst the various professionals.


hotboy said...

I had to teach my kid to read and spell. Kids do your head in. Hotboy

McSwain said...

For the last few months, I've been sitting in IEP meetings, interviewing special ed & resource teachers, and observing classrooms, both special ed & mainstreamed. All as part of my certification program. And I've got to say, I see nothing strange or unusual about your point of view as presented here. I think the attitudes of those you're working with sound a little off-base.

MC Etcher said...

You seem like a very involved Mom! I was drugged up for hyperactivity for years, and I still don't know if that was a good thing or not.

But it was the 70's, and I think people trusted doctors more.

Stephen (aka Q) said...

I think writing a letter and having it placed on Owen's file is a very good idea.

I have some experience that's relevant to your situation. For six years, I worked with developmentally challenged people. Initially, I worked with folks who had serious physical problems in addition to the cognitive issues; but in the latter four years I worked with "higher functioning" folks who had psychiatric disorders. This brought me into contact with psychiatrists, behaviouralists, neurologists, general practitioners, etc.

Before that job, I pastored a church for four years, which meant hospital visitation and dealing with medical doctors.

You are doing exactly the right thing to make the decisions with respect to Owen's education program. Their role is to provide you with data so you can make an informed decision. But you decide, not them.

You're the mom; you lead, they play a support role.

In my judgement, the position you took in the interview is perfectly reasonable. I know doctors and psychologists deal with a lot of irrational (even incompetent) parents, but it doesn't seem to me that you're in that camp.

You've had Owen tested, and you've carefully evaluated the results. You have accepted professional help; you aren't undermining them, you're just trying to set boundaries for them.

Kudos to you, I say! Owen needs you to play exactly this role!

robmcj said...

Well done speaking out and finding your eloquence.