Learning curve

A friend of mine posted a link to an old Anna Quindlen column about different stages of motherhood. It’s a lovely essay, all about Quindlen looking back on previous incarnations as an Anxious Mother, a Frustrated Mother, an Inexperienced Mother, an Angry Mother, etc. She talks about the various parenting books she looked to in her search for how to do it right, and the mistakes she made along the way, and how the only thing she really regrets about the early years is not being in the moment enough, not appreciating each phase along the way. It’s poignant without being sappy, wise without being sanctimonious, and lots of commenters talked about how it made them cry.

It made me cry, too, but not, I’m guessing, for quite the same reasons as most readers. This was the paragraph that did me in:

I take great satisfaction in what I have today: three almost adults, two taller than I am, one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like. Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves.

I’ve talked here before about my unfortunate talent for projecting horrible futures for myself and my loved ones. It’s a hallmark of the anxiety-prone, and I have it in spades. I have a hard enough time controlling it even when there’s absolutely nothing going wrong, so you can imagine the vicious thought-circles I’ve been  spinning since the Hatchling got diagnosed with a language disorder. Which in my mind always looks more like A LANGUAGE DISORDER. Some things we’ve learned about the disorder since the initial diagnosis:

  • The specific disorder is called Mixed Receptive/Expressive Language Disorder. Some people can understand language just fine, but have a hard time using it themselves; some people can speak language normally, but have a hard time understanding what other people say to them. The Hatchling has problems with both.
  • Nobody knows what causes this type of disorder in its developmental form (which is to say that in some cases it can be the result of brain injury or severe neglect, but in the absence of those factors nobody knows)
  • The disorder is NOT typically associated with lower-than-average intelligence
  • The disorder IS typically associated with all kinds of academic problems, from reading and math disorders to ADHD, not to mention depression and other psychological problems stemming from the social effects of not being able to use language very well.
  • Sometimes, with early intervention, the disorder can be remediated. Sometimes, despite early intervention, it can’t.

So basically this is just super fun and full of rainbows and unicorns, except for how it totally is the opposite of that. As is often the case with issues like this, since the diagnosis we’re much more aware of the extent of the disorder. It’s like getting the diagnosis allowed us to recognize it where before we were just shoving it under the carpet, so to speak. A few weeks ago we were looking at some old family videos of the Hatchling when she was about two, and – now that we know what to look for – we could hear so clearly how apparent it was even then. The non-verbal babble, the searching for words, was all there. And now that she’s five, the difference between her language and her peers’ is getting really noticeable. She can manage simple sentences and basic exchanges back and forth, but add in any level of abstraction or more than, say, three ideas at one go and she’s pretty much lost. What makes it even trickier is that her sociability and confidence are still above normal, so she naturally tries to lead play activities and reach out to new friends wherever she meets them … friends who respond to her sunny nature positively, but are already beginning to back off a little when they realize that they can’t always understand what she’s saying.

It’s killing me, y’all. Seeing her struggle or shut down when the words are too overwhelming, seeing the changing social dynamic with her friends, it’s KILLING me. I’ve been having a hard time doing the necessary research on the disorder and treatment possibilities because I practically have a panic attack every time I think about it for too long. I find myself getting horribly jealous when friends post stories or videos about their kids learning to read or write, or doing anything advanced for their age. I fucking HATE that kind of jealousy. It’s such an ugly response to anything. And I get so paranoid about helping the Hatchling to use language appropriately that I sometimes go a little overboard. This morning I actually told her that she couldn’t pretend to be a dog because she’s a little girl and she needs to talk like a little girl. No, really. I TOLD MY KID SHE COULDN’T PRETEND TO BE A DOG. What the hell? Not to mention, how can I even spend any time whining about this when I should be focusing on helping my daughter? You know, the person who actually has the language disorder? Gah.

So what does all this have to do with me crying at one of the more innocuous sections of the Quindlen column? I think what it comes down to is the loss of my imagined future  – both immediate and distant – with my oldest daughter. For all that I attempt to live in the present moment and practice detachment, I’m only human. Just like anyone, I dream about possible futures for me and my family, and just like anyone, I base those dreams on what I know of the past and the present. You know, like I was a gifted reader so maybe my kids will be. My family is good with languages so maybe my kids will be. Given my kids heritage, I don’t imagine they’ll grow up to be Olympic athletes, for example, or accountants. Given their backgrounds, I thought, it was reasonable to expect that they’d be outgoing, do well in school, have a flair for the artistic. It’s not that I’m wedded to a certain specific future for my kids, but I thought I had a good sense of the range of possibilities, both the potential positives (honors society!) and the potential negatives (drugs!) A language disorder was, frankly, nowhere on the horizon, and I just can’t seem to orient myself to this new reality.

I wish that I could leap into the future and, like Quindlen, look back on decades of parenting foibles with an affectionate smile for my former self, and the assurance that everything turns out OK. Maybe the Hatchling will be one of the lucky ones, and we’ll be able to laugh at posts like this. Maybe someone will develop a new treatment that works wonders. Maybe living with a lifelong language disorder won’t be as awful as I think. I’d give a lot to know that it all ends well. But of course I don’t get to do that, anymore than parents of typically developing kids do. And it may be that I never get to do that. What I do get to do, what I have to work on after all, is the same thing that Quindlen advises: be in the moment. Don’t be in such a hurry. Treasure the doing it a little more, and the getting it done a little less.

And when all else fails, there’s always bourbon.

8 responses to “Learning curve

  1. You have expressed a lot of things here that touch a lot of truths in my own perspective on parenting my son, but I will just mention one: I used to try and GET him to pretend he was a dog (or other various imaginary creatures). For, to this day, he has never, ever taken on a pretend play role. He responds, “I’m a kid.” And I think, “yes, yes you are.” So, even though he may read well, he always focuses on the actual rather than the possible. And being able to focus on the possible as the Hatchling does is a valuable and enviable skill (as you know, I’m not implying otherwise, of course).

    Okay, I will say one other thing… I also have a really, REALLY hard time resisting comparisons with other kids.

    • Yeah, the comparison thing is a bitch, no? I mean, I KNOW it’s unhelpful and pointless and stupid, etc., etc., but it’s extremely difficult to avoid.

  2. Oh, Elise, I’m so sorry to hear about this. It sounds awful, especially for you (and C.) since you are the ones who have to deal with it. At least the Hatchling isn’t yet fully aware of the dimensions of the problem.

    What *are* the treatments? How deep into the pool of specialists have you dipped so far? I’d imagine that Jordan would have some great ideas about this.

    Regardless, I hope that you can feel like you’re doing *something*, even if it’s just waiting for a more appropriate time for interventions. And H. is just five: she could well overcome this (quickly or slowly) and never think of it again. Stay positive!

    • Jordan was one of the first people I contacted! 🙂 Yeah, the treatment is basically speech therapy, and we are extremely blessed in having a very close friend (whose background is in working with autistic kids) who knows a lot about working with language in atypically developing kids. She’s been seeing the Hatchling 1-2 hours a week, which is HUGE, and she’s also helped us come up with some things to work on at home. So I’m hoping she’ll be ahead of the game once kindergarten starts. We’re also lucky to have insurance that actually covers speech therapy (20 sessions/year) so we’ll add that into the mix once I can determine who and where is the best for the Hatchling’s needs. It does help to be actively doing something about it. The problem is that I vacillate between “Yes! Proactive! She seems to be responding well!” and “Fuck. She’s really behind. The disorder is winning.” Gotta work on that last part.

  3. This is so hard, and Christopher is right–it’s hardest for you and C since the Hatchling isn’t old enough to grasp the possible implications of the problem, or maybe even see it AS a problem.

    It would probably be helpful if you could talk to adults who have these disorders, to get some sense of what her possible future actually is. I’m guessing, though, that the disorders only fairly recently received a name and description, so there wouldn’t have been early intervention for kids born in the 70s and 80s. Still, might there be older children whose parents you could talk to about this?

  4. Rosalie Darden

    I loved reading this emotion ridden scribe about the “maybes” in your life. Being a mommy is just plain hard at times. I have a special needs daughter with a chromosome abnormality who is quite different from Ellie. With my daughter everything is a milestone. She had educational help starting at age two, and by now it’s clear that they transformed the adult she is today. The journey that she has been given has been easier for her than for me, her mom. Ellie is blessed with a loving and brilliant family that will be cheering on her every word.

    It’s OK to rage. Acceptance is a hard won battle. Huge hugs from me and a special one for your beautiful little blondie.

  5. David Boyer

    Glad you have expert help lined up. Now I really am anxious to see how she does over the next few years. Wish I could fast forward into her future.

  6. I’ve been thinking about the Hatchling and you a lot lately, Elise. I am praying that all will turn out well. On those days that it’s difficult to be in the moment and not borrow trouble, I highly recommend Blanton’s.