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.