Well, the news is in. The reports are finalized. The diagnosis is officially .. well, estimated.
The quick version is that, as I’d suspected, our girl walked into a(nother) mine field and somehow managed to get no more than grazed by a bullet. She does have a form of epilepsy, however, it is (almost, mostly, sort of, we think) benign. It does not call for medication. There’s a good chance that she will outgrow it. If you’re going to have epilepsy, it doesn’t really get much better than that.
The bad news is that this didn’t turn out to be the key to the mystery of her loss of ground in language. There will be no magic pill to kickstart her stalled progress. The good news, however, is that, sans magic pill, there will be no scary side effects with which to contend, nor a mama in a constant panic about the long-term effects of pouring industrial strength drugs into a 49 pound child.
According to the epileptologist (yeah, that’s a word), the abnormal activity in her EEG looks (mostly) like the activity found in benign bilateral rolandic epilepsy. Of course, my sweet girl is never one to keep things simple (hence all the parentheses), so we don’t get to stick with that as a diagnosis. Instead, we’re going to call it ‘a-typical benign rolandic epilepsy.’ That’s my kid — even within the realm of a-typicality, she goes for extra credit.
The way that the epileptologist explained it to me, she has abnormal electrical activity in her brain, but the spikes that she experiences do not (currently) fall into the pattern of rythmicity or constancy of seizures. If seizures are fires, she’s got randomly popping embers. The embers are neither bursting into flames nor popping with sufficient regularity to be (at least obviously) destructive.
“So what do we do now?” I asked (again).
The answer was essentially, “Be vigilant.”
We were referred to this particular doctor for a reason. He has led the charge in researching epilepsy and its relationship to autism. He explained that if you were to subject the autistic population to EEGs, 30% of autistic people would have abnormal results similar to Brooke’s. The number skyrockets to 60% when that group is narrowed to those with (pre-DSM 5) classic autism. Approximately a quarter to a third (of the whole) will experience actual seizure activity in their lifetimes. (These stats vary wildly depending on who you ask, as the research is still relatively thin.)
Those numbers are scary. And they lead to far more questions than answers. And while knowing that our kiddo is in the 30 (or 60)%, doesn’t actually change her risk profile, it sure as hell changes our very tangible awareness of it.
“So what does all this mean?” I asked (again).
“It means that she can’t be alone in water,” he said. “It means that she can’t climb to the top of a play structure without someone nearby. It means that, well, we’re not entirely sure what it means.” Okay, maybe that last sentence wasn’t exactly verbatim.
“So we’re back to square one with the language question,” I sighed. “We still have no idea why she went from the 37th percentile in language to the 1st.”
He was quiet for a moment. And then he pulled words out of my head and said them aloud into the phone.
“Mrs. Wilson,” he said, “I would point out that her neuropsychological report shows stalled progress in language, which is very, very different from regression. She has not lost skills, nor backslid from previously reached milestones, but rather, her progress has not kept pace with her peers. As dramatic as the contrast may appear year over year, autism, as you well know, is a pervasive developmental disability. This will happen from time to time. She may periodically plateau, lose ground, or max out in a particular area. Try as you might, you may not find another explanation other than autism itself.”
The words had been rattling around in my head for weeks, but I was grateful to him for giving them a voice.
A-typical development … progress at a different pace, skill acquisition in a unique order, development that follows an unpredictable course. C’mon, Jess, you know this stuff.
In 2009, I wrote the following, then cited it again last August. It’s funny what we learn, then know, then need to learn again. And sometimes again still.
“Her development will not ‘catch up’, per se; it will simply happen in a different order.”
[Those words were spoken by the] first specialist we ever saw. The speech therapist who directed us to the autism clinic – Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew, just knew. And she was right about so many things. Not a delay; a disorder. A different order.
I’ve come to dislike dis-order. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.
In response to comments on that post, I wrote the following:
you know, this whole idea of breaking apart the ‘delay’ model meant a much bigger paradigm shift for me. when those words sunk in (they were in response to my ignorant question, ‘so when will her speech catch up’?’) they changed the whole visual for me. they did away with the entire idea of linear development. so, to my mind – there is no finish line. there are no lines at all.
people often ask me which ‘end of the spectrum’ brooke is on. i try to explain that to me, the spectrum is more of a three-dimensional sphere. some people have skills A thru D and challenges F thru L. some have strengths M, J and Q and some have deficits P, R and V. it’s round, it’s malleable, it’s unpredictable. and so it is with development.
i picture skills and tools and milestones all mixed together inside the globe. when they’re ready, armed with whatever tools we can give them from the outside our kids will grab them and make them their own. by definition, though, the globe has no ‘end’ – no finish line as it were. but i think in some ways, that’s the way it should be. hell, i’d hate to think that any of us was ‘done’ developing. i’m sure not and i’m 28. (or not)
So there it is. My kid is in the sphere – HER sphere, filling her tool box with tools, making staggering, delicious, fulfilling progress in HER OWN WAY.
She is, as she does time and again, reminding us that she follows no one’s course but her own.
As for the epilepsy? Well, it is what it is. It’s part of my girl. Part of her story. Part of what makes her who she is and what she will be. And whatever it delivers from here on out, be it nothing or be it something, we will be here to help her handle it.
I thank you all from the bottom of my heart for your advice (and for holding onto it when I wasn’t ready to hear it), your prayers, and the overwhelming love that you showed to my girl and all of us during this crazy time.
I ask that, if you’re willing, you keep praying – for those who still await their own answers and for those who are now trying to process entirely new realities.
To them I say, we walk with you.