In translation

My sister had surgery last week and has been staying with my parents (because her insurance wouldn't approve a post-op stay) so they could help take care of her ad she could have a bit of child-free recuperation time. Her husband (fiancee? I'm not really sure and it is a long story that is not mien to blog) is in the symphony's Christmas production, so last night my parents and sister went to see the show. We watched my niece so they could attend together.

Josh and I are always a little reluctant to add another kid into the mix, because we are fairly structured and with someone else's child in the equation the schedule is topsy-turvy, but it went smashingly. I especially enjoyed it because Lita (pseudonym) is only 3 months older than KayTar and they get along really well, it is worth a bit of schedule upset for fun like that. Also, it helps me to watch a typical child KayTar's age in action, because it is a good point of reference with her behavior. Yes, I know, comparisons are not necessary, but really? They are. For me, I like to know. A year ago, I didn't want to know. You might even say I ran from the knowledge. Now it is really helpful, because when your child develops atypically, you forget what the typical looks like.

Oh my, KayTar was a good hostess, in her KayTaresque way. She asked questions that are silly to other kids, they don't understand quite what she means, but she is attempting to reach out, to connect, and that is a good thing. Questions like, "Lita, how you watchin?" when they were watching Franklin's Christmas together. It means, "How are you enjoying the movie?" and it is one of those catch-all phrases she uses over and over. Like, "Mommy, how you reenin?" or "Daddy, how you sittin?" or "BubTar, how you playin?" When she wanted to share (which was surprisingly often) she would pull out the stock phrase, "Have it please." and thrust whatever the object she was offering towards Lita. Mostly she just mimicked Lita and BubTar and screamed in delight. Oh, the delighted screaming, it was plentiful.

BubTar was thrilled to have a spontaneous playmate, rather than solely a mimic. He also was on quite the power high from being The Oldest. You see when he is around other kids, he is never The Oldest. There are older cousins, older friends, and he is always the First Mate rather than the Captain. And did he ever like being the Captain for a change. He enjoyed creating scenarios and having Lita join in of her own will and actions, rather than merely a shadow of his own. KayTar, of course, mimicked one of the other participants blending into the action just fine. I wonder if this propensity for mimicking is lasting, here for the long haul. I wonder if it will cause problems for her once she hits school-age, being called copycat and the like, even though it is what comes naturally to her and she doesn't understand the other ways to relate and interact. It isn't fruitful to wonder about these things, but I do. The days of her blending into the background due to her mimicry are limited and I know one day, if it continues, it will cause the opposite reaction, standing out from the crowd. But for now, it facilitates her social life quite well, because most children her age are delighted to have a shadow, to be the one in control for a change. It suits her well at this point.

Lately I view everything through the Help or Hurt At The District Eval glasses. Will her articulation impede her ability to get speech therapy? Will the therapist evaluating her be aware of how many stock phrases and scripts she is using? Is her speech noticeably different from another child of her same age? Will they be able to see her mimicking in action? Although there are glaring differences between her when she is alongside her peers, I wonder if the same can be observed in a one hour time slot when she is the only child in the room. We see it, we recognize it, but we are with her constantly and it is undeniable after you've been with her for a few hours. I think that even here, in this space, I have difficulty conveying just how different her speech and relation to others is. It is hard to put words to, to draw lines around. She is a tiny chameleon and she mimics her way into the background. Her behavior appears just typical enough to give the illusion she is functioning at a normal level. A year ago, she was so delayed that it was undeniable. I didn't have to draw attention to it, because I had a nearly two year old who was using a walker and speaking purely in sign language. Now, her gaps are not nearly so obvious.

She walks, so people assume she is caught up physically. No one thinks about things like running or jumping or climbing. Most people wouldn't realize that she can't walk on our slanted driveway or across our backyard without falling, that she falls for no reason at times.

She speaks, clearly even, so she must be caught up verbally. No one realizes that much of her speech is memorized, cut and pasted from other conversations, rote. No one thinks that a child can speak so well without understanding her own words.

She is eating table food, so her sensory issues must be gone, her feeding troubles in the past. They don't realize that we still have many days like yesterday, days where she eats two yogurts and a few bites of mashed potatoes. No one realizes that her table food diet consists solely of square-crackers, dry toast, thin chicken nuggets, one kind of yogurt, and mashed potatoes, if she's feeling wild. No one realizes that some days she still refuses everything but a small serving of yogurt, or everything but a few bites of dry toast.

She looks healthy, so her weight must no longer be an struggle. No one knows how closely we have to watch it, to supplement it, to control it. No one knows how quickly she loses the gained ground if we aren't vigilant. All kids are picky, they say. Kids will eat when they are hungry, they say. She won't starve herself, they say. Except she isn't just picky, she doesn't feel hunger many times, and she will indeed starve herself, without a second thought.

And so I talk about these things, repeatedly, endlessly, because to look at her these days, you might not see it. She looks to be a healthy, mostly normal, nearly three year old little girl at a glance and it makes me so proud. She's come so far from the obvious disabilities of last year. She has grown and changed and become this sufficient little girl, even if it is in her own, very different way. But now her struggles hide, deceptively, sometimes disappearing altogether in her sufficient little hands, and so I have to point at them, "Look there. See that? It isn't quite right." I don't relish the task, sometimes it makes me feel ungrateful or not proud enough of her, because she has come so far and still I focus on the gaps. But I have to do it. I have to advocate for her, to speak out about these things, to find someone who can help her through them, to help her become even more sufficient in herself and in her abilities and perhaps discover new ones along the way. She is a foreigner in this land of sameness, in this land where everyone seems to function one way. She is an anomaly, an adorable, brilliant, capable, delightful anomaly. I don't want to change her, not for one moment. I just want to be sure that here, in this place where difference is not always viewed as an asset, she is given every opportunity to succeed. So I talk about these things, endlessly and always, rehearsing them, so I can keep them clear in my own mind, these blurred lines of difference, so I am always ready to explain them, to help people understand her, to help people help her. Because when you are Different in the Land of Sameness, you need someone to translate for you, at least for a little while.

Have it, please.



Smallish postscript update: Her deaf co-op teacher also feels that she has hyperlexia. I'm waiting on a return call from a secondary local SLP to try and get formal diagnosis before the Transfer, which I've started to think of in capitalized terms. Two months is not long, and then my baby will be three and in school. The help she receives will be decided by strangers. I find it all as unsettling as I do exciting, and thus it is all looming largely in my mind. The Evaluation. The IEP. The Transfer. A giant snowball turned avalanche of the coming months. But today her deaf co-op teacher also told me that regardless of whether she is accepted into the PPCD program, she is eligible to be in the 1/2 day 5 day per week Hearing Impaired classroom our district offers, which means no matter the results, she will have access to speech therapy and likely an FM system for her aid. That in itself, is a nice long sigh of relief. The rest (as they say in a song I find incredibly irritating) is still unwritten.