The Things We Know

The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like “stay up late and start drinking early” bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously.

A friend recently pointed me to a story I’d been hearing about but hadn’t actually delved into very deeply until now. It’s the story of Charlotte’s Web. Not the one about a sweet and helpful spider (a dangerous story meant to lull kids into a false sense of security, says this vigilant arachnophobe), but rather the recent account of parents desperately advocating to change the law in order to help their kids with severe epilepsy.

Charlotte’s Web refers to a strain of medical marijuana developed by a group of dedicated growers and dispensary owners in the state of Colorado, where medical marijuana has been legal since 2000. The strain was named after Charlotte Figi, now 6, whose frequent and dangerous grand mal seizures struck up to 300 times a week and often lasted several hours. She was losing developmental capabilities, unable to walk or speak, and was not going to last long. And her doctors were essentially powerless to help her.

Her seizures appear to be under control now thanks to the cannabis oil derived from Charlotte’s Web, which is low in THC, the compound in marijuana that is responsible for getting you and your slacker buddies high, and high in CBD, which has medicinal properties but no psychoactivity. Charlotte Figi is now doing very well now, down to two or three seizures a month, most occurring in her sleep. She is reaching those lost developmental marks again. Her parents and a great many others attribute her astonishing recovery to Charlotte’s Web.

A number of families, about two hundred or so, are now treating their kids’ severe seizures with this medical marijuana-derived compound, which is currently only legal in Colorado. They are engaged in another form of “nomad parenting”, in this case chasing life-preserving medical treatment instead of educational services. They do so because the debate on legalization of this compound has been taking place between a pharmaceutical industry that doesn’t see a clear path to monetizing the treatment, a scientific community that has yet to fully vet the process, and a political culture afraid of looking soft on drug enforcement, particularly where kids are concerned.

I’m not going to argue either way on this topic, mostly because while I have an opinion, I do not possess the expertise to say one way or the other, nor do I have a dog in this particular fight. Schuyler’s seizures are nowhere close to this level of danger and seem to be responding to a relatively light regimen of meds. But the thing that jumps out at me about this particular issue is simply this: the parents of these kids are having to fight very hard, frustratingly so, to be heard. The scientific and medical communities are dismissively waving their credentials with great enthusiasm. And the media seems comfortable with the whole “desperate crackpot parents” narrative.

I get that. Desperate crackpot parents sell newspapers (or generate page views, I guess it’s time to start saying). The parents who don’t vaccinate their kids because they think the shots cause autism certainly haven’t done us any favors, either. But that narrative ignores, or at least minimizes, the thing that special needs parents know in our bones. We know our kids. If teachers and doctors and therapists and policy-makers were open to bringing us into their teams and taking our testimony seriously, our kids would certainly benefit, sure. But their professional lives would benefit as well, is ways that would positively impact the many, many kids they’ll serve in the future.

It’s worth remembering that Schuyler was originally misdiagnosed as PDD-NOS, by no less of an authoritative entity as the Child Study Center at Yale University. At various points in her early years, we were told that she’d likely never read, and certainly be unable to write, both predictions we correctly rejected outright. Schuyler would never be capable of using a high-end speech output device, would never have the coordination to play sports, and would never be able to attend mainstream classes in a public school. Schuyler was presented with an implacable wall of NO, and in every instance where we didn’t buy into these scenarios, we were right not to. And it wasn’t because we were just pollyanna, starry-eyed optimists. There were plenty of predictions that felt right and turned out to be accurate. We knew how to tell the two categories of scary talk apart, because we knew Schuyler.

When I talk to other parents, there’s one topic that is almost always sure to bring us together and provide hours of conversation. When we talk about the things we know about our own kids, when we embark on the topic that begins and ends with “We were right and they were wrong…”, we have a common bond, sure. But it’s one that wears us down. It’s one we wouldn’t mind giving up.

“We knew what was best for our kid, and everyone listened and acted on our input.” Imagine living on THAT planet, with such a professional and societal respect for parent testimony being the norm in our lives and the lives of our children. While we’re at it, a unicorn that poops cupcakes would be nice, too. And probably just as likely.