Look. There are certain things that are harder to write than others. Mine tend to get a little flip flopped. Writing about the church? Ugh. HARD. Writing about pooping my closet? Surprisingly easy. So I’m not necessarily like everyone else when it comes to which subjects are agonizing and which are delightful, but, on this one, I suspect I’m like everyone else. Writing about my kid who experiences disability = hard. One of the hardest. Partly because I want to protect as much of his story as possible. And partly because there’s a sort of unspoken Hippocratic Oath among those of us who parent children who experience disability; we want, above all, to do no harm to these kiddos who already have enough challenges without their mommies making it worse by speaking out. You know? And so there’s an almost-covenant; if we DO tell our kids’ stories, we tell OUR PART ONLY. We tell the bits that help other mamas and dads like us know they’re NOT ALONE. We speak of our children in the BEST POSSIBLE LIGHT, always with sympathy, always with understanding. The world is already judging them, after all, more harshly than the world judges me or you, and we’ve made HUGE STRIDES over the last 5 or 10 years in helping the world SEE our kids as HUMANS FIRST and not CHALLENGES FIRST.
Disabilities of all kinds are less maligned than they used to be. We ARE making progress, at least among those of us who are kind and seek a diverse human experience. I see a new campaign every day to break down barriers. To increase understanding. To educate the public on how to treat each other. But, as a society, we still seem to need those who experience disability to be sweet and nice. To be cherubic. To be, if they experience difficulty, TRIUMPHANT about it, damn it. OVERCOMING their difficulties. And we’d like to hear about those difficulties after they’ve been solved, please. Never in the middle of them. Never, EVER. And so we rob those who experience disability of part of their humanity. Their ability to be fully, messily human when we insist they only have MAGIC and never mess. We make them caricatures of people so we can understand them in as few dimensions as possible; we steal their complexity and, in the end, part of their story, after all.
We’ve gotten to the part where we parents can admit raising kids — ANY kind of raising kids — and also raising kids who experience disability is HARD WORK. THANK GOD we’ve arrived there and parents are reaching out to each other to form networks and advocacy programs and person-centered decision making. THANK GOD and all the people who have made this happen.
We have not gotten to the part where we can share the full truth of what we experience.
I need to tell you a piece of that full truth now, because we Woolseys are in the MUCK and the MIRE right now, and we are NOT seeing the magic in the mess. We might someday. We cling to that as our future and carry that hope for our child who cannot carry it for himself right now. But today is not that day. Today is MESS, following days and days and months and months of more mess.
My kid — my kid with GREAT potential, who is beautiful and sensitive and had a HORRIBLE, HARD START in life and, since then, EVERY medical, psychological, mental and developmental reason for the very real challenges he faces every single day — is also an ASS right now.
Like, my kid is REALLY a jerk.
And it’s not Oppositional Defiant Disorder. There’s not some unearthed diagnosis here. We KNOW what this is — a large part is, in fact, medical — and we know WHY he does it, AND ALSO, he’s currently a big bully and his behavior is not OK. ALL OF THOSE THINGS ARE TRUE at the same time. He has good reasons to be a jerk, AND IT’S NOT OK. Both/And, friends. Both/And.
My kid used to be kind. Truly, deeply kind, and he looked out for others. Lately, 95% of the time, he’s not kind. Not to his family. And, more and more lately, not to his peers, either. Nearly all of the words he uses these days around our house are intended to maximize rudeness, hurt others, or, if he accomplishes all of his goals in one fell swoop, both.
He punched his 10-year-old brother in the stomach a few weeks ago.
He told a kid at school he was going to kill him. “I didn’t mean it, Mom” and rolling his eyes didn’t go over as well as he hoped.
He uses his man-sized body to block people littler than him or stand imposingly over them while refusing to move — nonverbal threats of force.
He’s been banned by XBox Live for inappropriate (read: threatening) chats.
His Gmail count has been deleted — by Google, in an official decision — for the same. We have responded at this point by removing all access to everything online for the foreseeable future. Which, you know, makes him ECSTATIC.
These are not, in other words, cute misbehaviors or understandable one-off scenarios. These are consistent. Disheartening. Discouraging. Sad. And this is a child on the cusp of adulthood — knocking on the door of age 18 — so I often have to pull myself back from the brink of going Full Lizard Brain, all “FREAKING OUT RIGHT NOW IS THE ONLY REASONABLE SOLUTION,” and assuming this is going to all end in a firefight with the police. The facts that he’s only ever at school or at home don’t seem to matter to Mommy Lizard Brain. She exists to call up the worst possible scenario, bless her catastrophizing heart.
Please understand, I am not unsympathetic to his behavior, nor do I blame the man child entirely. There are good reasons for this kid in particular to be a total raging asshole right now. In addition to intellectual disability, he is developmentally somewhere between an immature age 4 and age 6, with all of the impulse control that entails, while trying to navigate a 17-year-old body with hormones; he has expressive and receptive language disorders which keep him locked inside his head without the ability to talk things out the way you and I do, making for quite the pressure cooker of emotions and frustration; he suffers from anxiety and PTSD which he keeps on a tight leash at school and, therefore, unleashes entirely when he gets home; and, he is the perfect storm of social awareness — aware that he is different and desperately wanting to be cool with no real ability to navigate peer relationships in a socially normative way.
It is, in other words, a total cluster. Just an utter mess. This is a kid — a young man — who is trying to find his power and his purpose, and he’s found it very powerful to use his body and his words as weapons. To a person who feels otherwise out of control, having ANY amount of power is extremely seductive; he simply doesn’t have the developmental or intellectual ability to combat that right now. The problem is, we don’t know if he ever will.
I like to think, when Lizard Brain isn’t in control, that this is a phase.
I remind myself that many teenagers — myself at that age absolutely included — go through a raging asshole stage.
I remind myself of all the help we’re getting — from his school, from doctors, from specialist, from eating programs and emotional regulation, from my parents who are working tirelessly on his behalf to get him the additional services he needs.
I remind myself that my child who experiences disability is FULLY HUMAN, and all of this simply proves it.
I remind myself that he is also FULLY DIVINE, made in God’s own image, even if I want to drop kick him over the back fence right now and see if any of that damn divinity will shake loose so I can SEE SOME.
And, because I, too, am fully human, I succeed at those things some days, and I don’t succeed others.
Why am I telling you all of this?
Because my kid, like every person on this planet, is real. He’s complex. He suffers. He makes good choices. He makes terrible ones. He is not cherubic at the moment. He’s being rather awful, in fact. Part of being real, though, means being ALL MESS sometimes. ALL MESS with magic buried deep down inside.
Waving in the dark, friends,