My Kid Experiences Disability. He’s Potentially a Very Rad Human. Right Now, Though, He’s an ASS.

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.

But, friends.

Friends.

Friends.

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.

So.

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,

 

 

 

 

 

Next Post
Previous Post

ABOUT BETH WOOLSEY I'm a writer. And a mess. And mouthy, brave, and strong. I believe we all belong to each other. I believe in the long way 'round. And I believe, always, in grace in the grime and wonder in the wild of a life lived off course from what was, once, a perfectly good plan.
41 comments
  1. Hugs heading your way. We also have two kids that are difficult, one with severe ADHD, and I allow myself to say at times “I hate my kids”…because in that moment I do. But I don’t let myself say it often, because that sets up a mindset I don’t want. They need all the love that they can get.

    Does anyone else find this experience isolating? I don’t want to talk to other parents because they will never understand…and I withdraw, and sometimes wonder if I should apologize because my kid has done something obnoxious that they know about…so I isolate myself. And that’s not good, either. We need each other even more now! Faith carries me on!

  2. “There is truly nothing harder than the relentless work of trying to stay regulated and calm and reasonable in the face of horrendous, provoking behavior, all the while terrified of your kid’s future.” – Kate from a previous post

    This struck me. My child is almost 12. He does not have a intellectual disability, but he suffers from anxiety & depression, and I suspect ODD. He’s already been hospitalized twice for suicidal ideation (end of 5th grade & beginning of 6th). He is not just an ass most of the time, he’s a dick. He was the most loving small person, could be difficult, but very compassionate & tender hearted. I grieve the loss of that child. Now the majority of the time he’s hateful, insulting, unreasonable, and hurtful, not to mention there’s that looming danger of him hurting himself every single DAMN time I make him mad. I’m at the point where it’s really REALLY difficult for me to stay regulated, calm, & reasonable. I want to run away. I am ashamed of the way I feel sometimes. And there are days that it is almost impossible to see any hope.

    Beth, you are in my prayers today as you deal with this. Parenting is the best & the worst thing sometimes.

  3. Waving and praying and loving you.

  4. Waving at you from here too. My mommy lizard brain sees me visiting my son in jail. I have three, all adopted. Oldest on the spectrum, middle – the one who’s gonna have me die young, and baby with some major delays developing as he moves into toddlerhood. My middle though. He’s bright, verbal, active (like, he cannot sit still even for even a moment, ever, not even to eat or sleep – constant motion), and very, very much an developmental trauma kid. Heavy exposures, very hard start. There is truly nothing harder than the relentless work of trying to stay regulated and calm and reasonable in the face of horrendous, provoking behavior, all the while terrified of your kid’s future. It’s absolutely the worst. And my guy is way smaller than me, so I can’t even imagine dealing with a man child (I lie, I imagine it daily) on the cusp of having the world see him as an adult. Hugs and waving.

  5. ((hugs)) Mama.

    You are not alone. One of my besties has a child in similar circumstances. It has not been an easy journey, but like you they stuck to their guns. They taught and led and disciplined and understood and empathised and did everything parents must do, no matter their child’s abilities. And today, he’s still challenged, but most of the time he’s a good person. And that’s the most we can ask of our grown (or almost-grown) children.

    Keep on keeping on, Mama. Keep on holding on, and reaching out for the support you need from other parents and the people who love you. You’re amazing. You’ve got this. And it’s going to be ok. <3

  6. This took my breath away. I would love to say the things people say. “You’re super mom!” and “I don’t know how you do it.” But I already know you’re NOT super mom, you’re just Plain Old Mom plodding one foot in front of the other, expanding to become the person your kids need you to be. And I CAN imagine. Because some dialed down, scaled back version of this story lives in my house too, and I feel like I put ALL of my energy into either dealing directly with it, or telling my lizard mom brain to shut up already. So I will just say this – keep feeding YOUR soul, sweet friend, in whatever way you do that. You can’t feed others if you’re starving yourself, and I know too well all of the rest of the things we never say, if we’re raising children with special needs – the frustrations of siblings, the constantly beating back the chaos and ugliness that tries to overtake the mood of your home, the phone calls with professionals, and all of the time required in YOUR schedule to make all of those specialists’ visits happen. And in the meantime, other kids just keep on growing and needing and changing, too.

    #metoo. Waving in the dark, as well.

  7. Thank you for sharing this!! I get so frustrated caught between wanting to share our truth and feeling like my son, at 14, needs to be protected from it. Like your son “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’s sad and scary for this mommy.

    1. Sending love, Kristine!

  8. My husband says, stay positive, because if you eat enough glitter, even your shit will sparkle.

    1. Given the extraordinary amount of shit I know your husband has had to endure in the past few years, it makes me very glad to know he says this! Love! xoxo

  9. I’m not sure if this is helpful but it’s what came to mind. My parents came to visit me a couple of weeks ago. It was nice. I asked my mom if I had changed a lot since I was in high school. She said, “You’re kinder now.” Sweet hope.

  10. Oh, dear Beth, as a mom who has a 21 year old who nearly didn’t make it to 20… Thank you! We don’t know how alone we can feel until it is our child with the blood dripping off their arms. Crying and raging and wanting to be held, yelling, whimpering and bleeding on your bed while you are staunching the flow and trying to plan where the hell you go from here. We made it, but through the grace of god, not from my expertise… He is actually good, now. Job doing road prep– seeing baby animals and sunshine– living with my 29 year old brother, being a young man. The scars are still there, rows of deep, thick raised flesh up both arms, but my arms were strong enough to hold him here, and his spirit is strong enough to keep looking for a better day. Sometimes I think it takes the big mess for us to really see the magic.

    1. Amie, is there a way I could send you an email?

    2. Oh Amie. Thank you for sharing your story. Yes to the scars. And yes to the strength. Both/And, friend. xo

  11. Dearest Beth, my prayers today are for you especially. My 11 yo grandson is on the spectrum, sometimes the sweetest, most lovable kid in the world, other times, the total Ass. When he was little, I’d wrap him in his weighted blanket and wait for his temper to calm down. Now, he’s bigger than his mom, almost as big as me and the physical pain I get from trying to control him isn’t worth it. I hide under the weighted blanket and wait him out. Mom has him medicated, I don’t agree with that, but we’re fortunate that he has 2 sets of grandparents and his mom,so when he gets to the point of no return, we can send him off for the day and usually the change of scenery helps. We all realize it will probably get worse before it’s gets better, but I’m convinced prayer and love are the best medicines. I’ll add my dose to yours today

  12. I’m kinda sad that you had to preface your venting with the “societal expectations” caveat, because I know it’s necessary and that’s sad. My husband’s best friend wound up divorced because his wife was afraid of him, and justly so. No one tells you how to care for the aggressor. But humans need love, even when they are asses. Sending you all mine to shower on your family.

  13. Thanks for this Beth. So important.

  14. Beth – Are you familiar with Dialectic Behavior Therapy (DBT)? DBT is based on the premise that two things that can seem to be in direct opposition to each other can both be 100% true at the same time. For example, a person can be full of love AND full of anger. A parent can love their child so much that they would jump in front of a train for them AND be so frustrated with their child that they want to run away. A person can be scared to death to take a risk AND brave enough to take the risk anyway. It sounds like you are in a pretty dialectical place right now. Know that you aren’t alone (trust me…you are not alone). Lots of us are waving to you in the dark. Thanks for being brave enough to put this out there. It is scary to say some of this stuff out loud…and yet it is so important to do so. It makes the rest of us feel not so alone.

  15. Intellectual disability and trauma/mental illness are such a hard combination. All that bad stuff just gets locked up inside and can come out in the most unpredictable ways. Our teen (also adopted, with ID, language delays and PTSD) outweighs me this year, and is about to be taller than me, which makes some of his aggressive and destructive behavior start to seem really scary. I know he acts from fear, but now I sometimes act from fear too, because he could actually hurt me. It puts us both in a bad place. I can only imagine how much harder it is when you also have younger kids at home who need to feel safe as well.

    1. Yes — we do a lot of safety work as a family. And we’re big believers in both supervision and tattling! But it’s also something we grieve, this need to have safety measures in place. Sending love to you and your bigger-than-you boy, Anka. xxx

  16. ((hugs))) and waves in the dark!

    My oldest son is almost 16. He’s my easy child, which makes me ashamed because since he isn’t a squeaky wheel he doesn’t get nearly enough grease.

    My youngest son is almost 10. He’s on the spectrum, with auditory processing disorder, social, emotional, sensory, and motor control challenges. He’s in school here having to learn a second language when we just finally got the first language figured out after 4 years of therapy. He HATES that the bus driver makes him hold their hand when changing buses – it’s the worst thing in his world right now, blown so out of proportion in his mind that it ruins all good things about each day. I am so nervous about the next 8 years as hormones hit…. but even he’s not the kid I am panicking over right now.

    My daughter is moving out – at age 17 (almost 18) – unheard of in Uruguay. She – and we – had enough of the constant power battles. She is moving ten blocks away into a small, safe house with a fenced yard. Her enormous black Spanish greyhound (galgo)goes with her. The house is owned by a good friend in the community, who lives midpoint between our house and hers. She has a good job – provided by me, thankfully my business grew enough that I can hire her on this year full time.

    But she has depression and we’re waiting to find out if they diagnose her as bipolar or with simply another mood disorder, and she’s got borderline OCD – which I am a terrible person but I am almost grateful for becasue I KNOW she will check the gas stovetop 4-6-11-18-23 times before she goes to bed every night – but even though she put her foot down and said I AM AN ADULT and I NEED OUT OF HERE and OMG I GET MY OWN HOUSE!!! She is still scared shitless under the excitement and I miss my baby girl already.

    Sniff.

    Raising kids is SO. DAMN. HARD. Thanks for sharing. <3 and love to you and your lovely, if assholey at the moment, boy.

    1. Thanks for sharing your Both/And, Grace. I SO get it. We have teenagers who are SO EASY. Like, aside from moments just like my moments where they temporarily lose their everloving shit, they’re MOSTLY, NEARLY ALWAYS delightful, fun, funny, deep, beautiful creatures. And then we have this other teenager who’s HARD, who’s always been HARD, but is lately JUST hard, which is… hard. Our twins are similar — one is easy as pie, the other, though not a rage monster, is more challenging and demands a greater amount of time. It’s difficult not to feel guilty for the tiny bits of time the easy ones get. But… that’s also life right now.

      Sending love to you, your wife and your kiddos. xoxo

  17. I’m sorry. I have a 25 yr. old who was an ass through so much of his adolescence and young adulthood. He is realizing it now and is making great strides. My husband was talking to him about something he did as a teen, and ended with “…..you know, back when you were an ass.” And my son chuckled and said, “You’re gonna have to narrow that time-frame down a little bit.” I tell you this to tell you there is hope. I will pray.

    1. HA! That’s AWESOME, Hope!

  18. Waving right back at ya. The things we can never discuss.

    Mine is also a teen. Multiple issues and global delays. Sweet as sugar to those outside our home. Generally raging toward me. The counselor says that’s common for the primary caregiver. Currently going through an insane lying phase, which means I can trust nothing and must verify everything, which just makes her more hateful toward me.

    And we homeschool, so I’m saturated by the end of the day.

    Waving, waving madly.

    1. Waving back, friend.

  19. Waving and praying for you and your man-child.

  20. Waving so hard I might actually be able to waft the dark away with my arm/wing beats. Love to you.

  21. The good news is one day he won’t be a teenager anymore and those hormones will calm down. Drink well until then! Yowzers, this sounds hard. Adolescence is hard in the best of times, sorry you’re in the worst right now. Multiple times a week, I see kids bolting out of front school doors, tearing bulletin boards off the wall, kicking other kids, throwing chairs in the principal’s office, even a computer thrown off a second story balcony (miraculously the innards survived and we only had to replace the case and display). You are definitely not alone.

    1. TEACHERS ARE HEROES, EVERY ONE! We’re so grateful we don’t raise this child alone. xoxo

  22. I’m sorry. That seems weird to say. Maybe I should be sorry that I don’t know what to say. Parenting is so hard. I have a perfectly normal, successful kid. He’s a freshman in college. He’s mostly okay and sometimes great but sometimes total ass. It’s heartbreaking to see the cuddly sweet kid in my head juxtaposed with the 19 year old jerk. It’s probably wrong that over spring break I screamed at him the fact that he was an ass. So I’m saying sorry, because as awful as mine is I know he will keep his 3.2 GPA and his athletic scholarships and his cute girlfriend, and I know you don’t have that to hang on to. And I can’t imagine how hard that must be.

    1. Yes. You nailed it, Alice-Ann. This is one of the ongoing griefs of raising a child who experiences disability; we don’t know his future and don’t have things like this to cling to. I experience it every time I watch my oldest daughter succeeding at college and my youngest sons figure out a complex math algorithm or talk about the periodic chart. My son doesn’t have these things to comfort him, but he DOES have a pretty amazing support community who will fight for him. Just this morning, my parents were at the county office that supports people who experience developmental disability, turning in reams of paperwork and getting new piles of information on next steps for services. It’s HARD right now, but we also are determined to HOPE.

  23. Love to you❤️

  24. Do you have a secret chocolate stash? I feel like you should really have a secret chocolate stash, and I speak from experience. Momming is hard, momming teenagers is harder, and heavens above when you throw in kids with special needs CHOCOLATE. I will wish for you the good chocolate, the right words at the right moments, and sun breaking through the clouds.

  25. Oh Beth! I’m waving. And I just said a giant prayer for you and your unnamed manchild. I don’t know know his name, but He who answers prayers does, and that’s all that matters. Sending love and hugs. Thanks for posting so we know to wave.

Leave a Reply

Your email address will not be published. Required fields are marked *