Wednesday, April 10, 2019

An Open Letter to the Friends and Families of Parents with Neuro-Atypical Kids

Even if you don’t know it, this letter is written to you. Whoever you are, and whether or not you are aware of it, you almost certainly are related to or acquainted with someone who is affected by a brain that is different from most. This is just a handful of numbers that don’t even begin to capture the whole picture, but they are a start. 
  • Every year, about 42.5 million American adults - nearly 1 in 5 -  suffer from some mental illness, enduring conditions such as depression, bipolar disorder or schizophrenia. 
  • 9.4% of children aged 2-17 years have received an ADHD diagnosis. 
  • 7.4% of children aged 3-17 years have a diagnosed behavior problem. 
  • 7.1% of children aged 3-17 years have diagnosed anxiety. 
  • 3.2% of children aged 3-17 years have diagnosed depression. 
  • Each year, about 6,000 babies are born with Down syndrome, which is about 1 in every 700 babies born. Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%.
  • Among adolescents ages 18-19, just under eight percent of females and just under three percent of males identify as homosexual or bisexual. 
  • An estimated 0.7 percent of youth ages 13 to 17, or 150,000 youth, identify as transgender in the United States.
  • the CDC has increased its estimate of children with autism spectrum disorder to 1 in 59 children - over a 15% increase over the last two years.
Six degrees of Kevin Bacon has nothing on the likelihood that you are close to someone who is close to someone whose experience of being human differs from that of most people. Someone who is, in one or more ways, neuro-atypical.

I’d like to clarify a few terms first, at least in the way I’m using them. “Neuro-atypical” is not a euphemism or a code-word for “mentally ill,” “badly-behaved,” or just plain “fucked up.” It does tend to include and overlap with these categories (including the ones like the last that are nothing more than judgmental pigeonholes), but none of them really covers the gamut. There are lots of ways that people’s brains operate, contributing to temperaments, behaviors, cognitive patterns, and emotion states. The fact that only a narrow band of those are considered to correlate to success as it is typically defined doesn’t mean the others are strictly aberrant. A 7-foot neck makes for a lousy draft horse - but works pretty well if you’re a giraffe. 

“Kids” means anyone who we are raising or have raised. Natural born, trans-generational, or adopted. Toddler through young adult and even adult. Living at home, on their own, or in a facility. For many of us, the idea of our children “leaving the nest” is far from a predictable proposition or a forgone conclusion. Even if and when they do forge out on their own, we may never be able to fully surrender our role as caretaker. Some of us may, indeed many of us will - but it won’t be on the standard timetable and won’t follow the usual script.

Our kids are not “broken,” or “problems.” They don’t need to be fixed, or corrected. They do need to be understood, reached, and connected to purpose so they can do what they are capable of - which is not less valuable than anyone else’s capability. Our aim is not to re-make them or force them to conform - it is to empower them and allow them to flourish. Everyone who has ever changed the world has done so not because they were a perfect fit for the world, but because the world did not fit them.

Here are a few things that we, as parents of these kids, need you to know. We are grateful for your support and your empathy, and most of all for your love and care. It is necessary to honor that with honesty and directness, so that we all can understand and value one another as we should. 

Some of this will make you feel badly - angry, possibly hurt, maybe insulted on some level. We understand, and we are sorry - but these things are true, and we need you to understand. 

We recognize that you have your own valid emotions including fears, doubts, and pain, and that you need and deserve to be able to discuss, share, vent, and process these feelings with someone. We cannot help you with this. Please turn to someone else in your support network. If you see a therapist yourself, that’s a great choice. If you have a close friend, a pastor/priest/rabbi/imam, or another family member, those are also excellent choices. Support groups exist too - but please don’t come to ours unless you check with us first.

We are not at a loss for doubts, fears, catastrophic predictions, second-guesses, or future-trips. We have spent huge parts of our lives wondering what we did or didn’t do, what we might’ve done differently, how we could/should have headed “this problem off early.” We constantly fight - hard - to keep these dragons at bay. Please do not feed them for us. 

Please don’t tell us what you’ve heard works for other kids, typical or otherwise, and suggest we try that. We're not stubborn or unwilling to accept advice - many of us have the benefit of working with professionals who have devoted their careers to understanding and helping these kids. Every one of these kids is different, and needs different things. Paraphrasing Tolstoy, “typical people are all alike; every atypical person is atypical in their own way. Standard approaches work well for most people because that is the definition of typical - true to type. Those things fail for the atypical for the same reason.

(Oh, and specifically for previous generations. Please do not remind us how we were raised, and how “we turned out okay,” suggesting that we do things the same way. We’ve tried it. It didn’t work. Those parents who say they now feel sympathy over what they put their own parents through? We are not those people. We wish our kids acted “just like we did.”  You had it easy.)

By contrast, this will not be easy for you, us, or them. There will be setbacks and rough patches. Bad days and very bad days. Bad weeks. Months. Years even. How many? A few. A lot. We don’t know. How bad? a little bad, really bad, unimaginably bad? Yes, probably all of these. It will happen. At no point will all of it be in the past. We have to accept that, and so do you.

Okay, you’ve gotten through the hard part. Thank you. Take a deep breath. This part gets better.

Our kids are special. They are different. They bring things to the world that typical people don’t. They see things differently. They can offer us new perspectives and augment our understanding in ways we would otherwise miss. Not all of what they bring will be valuable to us (though it will to them), but if ever a world was changing fast enough to need a lot of difference and divergence of perspective, it’s now.

Listen to us when we tell you things. That’s all you have to do - we are not bringing you a problem to solve, we just need you to see where we are and what we and they are going through. You don’t have to shoulder our weights for us, just remind us that we have the strength and the wisdom to carry them - because we do, we just sometimes need reminding of it.

There will be victories. We invite you to celebrate them with us. Every time they surprise us with their talents, unique insights, or glimpses of beauty, join us in taking part in their joy. As much as these kids challenge us, their good moments shine all the brighter and warmer. There will be good days, and very good days, and amazing days. A few, a lot maybe - far between or in great wonderful streaks. They will always be in front of us. Trust us, we will notice these moments - when we tell you about them, share our happiness, and look forward to the next one in the times between.

The future will be a surprise. We can’t fully prepare for it, and certainly can’t predict it. But it will not be routine or boring. We are learning to be curious about that future, rather than fearful. Watch for it with us, and be ready for something none of us expects - not even them. We get the privilege of helping these kids usher in a new future. Share it with us - we welcome you.

We need you with us on this. We want you on our team. Many doors are open, even if some are closed. It’s a worthwhile journey, and one that few have the privilege of taking. Like any privilege, it is also a weight - but it’s not a burden. Join us as we learn to be grateful for the journey even as it changes us, changes them, and maybe changes the world.