Thursday, April 17, 2014

The d word

That would be disclosure, in case you were wondering.

I'm finding myself in this interesting space where I'd like to write about something very profound happening in my life but it would make me way too identifiable. So let's tiptoe around it for a bit, shall we?

For a long time we have been trying to figure out what the deal with the kid is. She is a very quirky kid. Now we have a relatively neat answer and a label and that's exciting and terrifying. At this point it's hard to know if the label will stick but it seems like we just discovered the label had been attached to her all along and it was discovered rather than attached externally so I'm pretty comfortable with it overall. The label's big reveal is very helpful to me in how I approach parenting in that I know I'm not doing anything wrong but that what I know to do is based on a label-free child and that's not who I am parenting so my approach needs altering. It isn't that the everything we have tried was done wrong by us but that what we needed wasn't in the realm of normal "everything."

So to whom do we disclose this information? Does it matter? Should we be thinking about how a label changes the way she is perceived or is it inherently wrong to withhold information from those who might benefit from it?

Last night the spouse and I watched the movie Gataca (why yes I spelled that wrong) about a future where selection of specific genes is normal before a child is created via something like IVF. A lot of it boils down to how we discriminate against those with a certain label, whether that label is one that's visually apparent to everyone or one that is revealed by a test. The lead character really wants to be an astronaut but his genetic probability at birth says his life expectancy is only to 30 and he will have "a heart condition." He proves that he is mentally very capable despite that doom and gloom prediction of his odds of success in life as a baby. The genetic counseling session where the parents with the unordered baby protagonist in tow is really intriguing as the parents choose just how much they want to control the genetic probability of various risks.

But our world isn't just going to be like that if it changes and we order babies off a menu. It's like that now. Men and women get a different number of calls for job interviews, mentoring opportunities, and promotions with identical resumes. People with an "ethnic" name get discriminated against like there's no tomorrow (who gets called back about an apartment or a job or even the micro-aggression of having to explain where you are from to every person you meet). Fat people get their health concerns blown off and are told to lose weight as the sole solution to every problem. I got told my migraines would get better if I lost 20 lbs by a migraine specialist for example. They didn't of course.

To some degree we are people and we have to weed out people who are helpful from people who are harmful so discrimination is in our nature. I think that degree is tiny compared to the way we've structured society though. Look at who is in power and who isn't. There's a line and only a very certain set of people get to cross it. We all lose because of this narrow control of power.

So I am struggling with disclosing this label. How does the label move what people think about my kid, about my parenting of her? When do we tell her about the label? We have an appointment to look at this with her primary doctor next week and it's hard to know if she's old enough to know about the label yet, and if telling her does more harm than good, and if we should bring her to the appointment and involve her or if we should let her continue being her without the label wandering around in her psyche.

That of course is the heart of the matter - disclosure. Do we disclose what we know to her now and if not now, when? What's the age where the label will be something she can understand completely?

And who else do we let in on the label? Primary caregivers only or do we wait to see if she struggles and then clue in the primary caregivers? Teachers? We decided to see about what the school district has to offer so that cat is probably out of the bag but we need to know our options and figure out if labeled schooling matters or if she can succeed somewhere with no label beyond her name.

4 comments:

  1. I find it hard to comment on this without knowing more, but I understand why you don't feel at liberty to say more. I guess I would just say that you seem to have a pretty good idea of how you want to proceed, and if doesn't feel clear yet, it probably will by the time you have to make the decisions you mentioned here.

    Abiding with you.

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  2. It sounds like you feel that the label both fits and is helpful to you. Specifically, you said, "it seems like we just discovered the label had been attached to her all along and it was discovered rather than attached externally so I'm pretty comfortable with it overall," and "The label's big reveal is very helpful to me in how I approach parenting in that I know I'm not doing anything wrong but that what I know to do is based on a label-free child and that's not who I am parenting so my approach needs altering." In the context of your stated feelings, I'm going to give my teacher's opinion, which is that not disclosing the label is probably not helpful to your daughter. The people who work with her who are not her parents have limited time in which to get to know her and to tailor their approach to meeting her needs. If you, as her parents, find the label helpful, well-informed professionals, as her teachers *should* be, should find it that much more helpful given their limited time with her. I have seen situations in which school professionals struggled and struggled to figure out the needs of a new student until finally a parent disclosed after a year or so that the student had previously had an IEP and everyone wanted to bang their heads against a wall because the parent's earlier refusal to disclose the IEP was essentially a wasted year of trying to reinvent the wheel (which is not to say that all labels or IEPs are perfect, but at least they're a starting point further along than nothing). That being said, if you intuit that some people in your daughter's life would use it badly and stereotype your daughter rather than using the label in an intelligent way, that's also legitimate. I hope you are able to disclose to those you want to and not to those you don't.

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    1. Our plan is to push hard for what she needs at school and to probably not mention it to her non-school caregivers unless there's a problem. I think it looks like we will spend the remainder of the school year arguing to get her an IEP that fits and selecting a proper elementary school that will support her and letting the rest go for the moment since elementary school is rather short here anyway and we have no certainty that we will stay here once I have a job. I really appreciate your perspective and it's right in line with what we figure is needed to get her help where she needs it.

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  3. fullbed wrote exactly what I was going to say! Good luck deciding what to say...

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