Do you know what happens when you finally get a diagnosis that makes complete sense, that encompasses all the physical and emotional and cognitive issues you have witnessed in your child daily?
Not much, actually, except some "Ah-ha!" moments and people finally stop giving you parenting advice that you always knew wouldn't work because they finally realize for themselves that it probably won't work, too. But honestly, even after the diagnosis, you're still left feeling mostly overwhelmed and kind of stupid and completely uncertain as to what you should do next.
Do you know what happens when you find a doctor who cares nothing about telling you what is wrong with your kid but instead wants to focus on how to best parent effectively to your kid's actual needs and challenges?
Your life changes. That's what happens.
Our parenting plan has not been an easy road, because frankly, even the team of behavioral specialists at Children's Mercy told us bluntly, "Your son is not ever going to be an easy child to parent."
Yeah. Thanks. Too bad our health insurance didn't cover that little bit of medical gold.
This doctor we are working with is awesome, but we have had to hear and accept some hard truths. Things like "Quit putting your own anxieties on to your kid," and "Your intentions may be good but you are reinforcing this behavior, this fear, this reaction, and you have to stop."
But we aren't going to him so he can hold our hands and tell us we're doing fine, because obviously, we haven't been.
And it's not just about telling us what to stop - he has given us very concrete advice. You know how people are always like, "Yeah, too bad kids don't come with a manual"? Well, they don't, but if they did, we're pretty sure it would be written by this doctor.
So much of what we do is so simple. We don't lecture. There is no reason to lecture - our son doesn't understand, and lecturing is a waste of breath. We have learned that it's perfectly fine to simply say, "Because I said so," and leave it at that. We have learned how to do time out in a way that works for our kid, and, more importantly, how to practice time in, which felt corny and fake at first - we don't wait for awesome behavior to praise our son, we praise him for "okay" behavior, things like listening the first time, or sitting still while eating lunch - but it's becoming more natural. We are learning how to discipline, and when to discipline, and when to ignore. We are learning that discipline is, at this age, so much less about punishing and so much more about teaching.
We are learning that our son's diagnosis may be the reason he behaves a certain way, but it is not an excuse.
It was freaking horrible at first, as we implemented the new strategies we are learning - strategies that we have to implement every time, without fail, no matter what, and often left us exhausted at the end of the day, as if we had spent 12 hours pushing a rock up a hill instead of just parenting our own kid.
His behavior escalated - and by escalated, I mean it skyrocketed - apparently a natural reaction as boundaries are set and enforced, but it made the exhaustion at the end of the day just that more exhausting. Like, "Can you please tell me why we are doing this, if it's going to make the problems worse?"
For example, he spent a day at school jumping up on the table and yelling, "You are hideous!" to his teacher. At the store one day, he started yelling, "I hate you and I hate this stuff!" before biting himself and punching his own forehead - because we had to go to the frozen food section. There were daily episodes that left me literally dripping sweat and shaking and swallowing back tears until bedtime. He would refuse to get in his booster seat. He punched me. He kicked his dad. Everything was met with resistance. He screamed that he was nothing, that he hated the world, and then would cry like his heart was broken and beg me, "Don't let me say those things anymore," and my own heart broke, too.
But we didn't yell. We didn't stick him in time out for 137 hours or spank him or berate him or lecture him.
It was, "Sit down. Quiet mouth, quiet hands, quiet feet." And as soon as he could give us all three, he was all done. Sometimes that took 15 minutes. Sometimes that took 2 minutes. But it was every time. Every. Time. I'm talking more than 30 "time outs" a day at first,
But then, things started getting better. And then a lot better.
We have days that our actual triumphs, days where the color of the floor at the supermarket is not an earth-shattering event, where the hum of a commercial freezer is met with covering his ears rather than screaming, where brushing our teeth is "No big deal, right, Mom?" Days where we keep our clothes on, and put our shoes on, and maybe even try a new food. We have days where he gets upset, and manages to reign in his anger enough to not bang his head or punch himself.
We have days that end with not just us being proud of our son, but of our son being proud of himself.
And although I won't lie and say that we no longer raise our voices - because c'mon, at the end of the day, he is 5, and 5 can be frustrating to parent, whether your kid has challenges or not - I will say that the yelling is now a rarity instead of a daily occurrence. And not because we are naturally gentle, patient people - we are not - but because we see now how ineffective it is with our kid, and how much more effective this other stuff is.
And folks, he poops in the potty now. The doctors were never sure whether that was a cognitive issue or a behavioral one, but I can tell you as a mother who stopped buying pull-ups long ago yet still had a pre-schooler pooping his pants, it doesn't matter - it was an issue, period. And the pride all three of us felt when it finally happened cannot be measured. Junior now tells people that "pooping in your pants is boring."
"Boring" is not the word I would have chosen, but whatever. I am proud.
We still have daily struggles. Daily challenges. But challenges are now causes for action rather than despair, There are lifelong emotional and behavioral and cognitive challenges to be met going forward but we know now - our son's diagnoses may be the reason, but we will not let them be the excuse.
The other day, we were at the store, and Junior was walking alongside me, holding onto the cart, meowing. A lot. Constant meowing. Just lots and lots of meows. And one of the trickier parts of having a kid with Tourette's Syndrome is differentiating between a kid who is meowing, which he has the ability to stop, and a kid who is having a vocal tic that is making him meow, which he is incapable of stopping.
People were staring. People stare a lot, to be honest, and it's always made me feel defensive, always made me want to snap, "Listen, he has special needs!" But I don't feel the need to do that anymore.
Instead, I just started meowing, too.
Because whether he was meowing simply because he felt like it, or because he was ticcing, meowing never hurt a damned thing.
And that's what I mean by life-changing. We've known since our son was three that something was different. And we spent two years chasing a diagnosis. "He has epilepsy. We suspect autism. He has definite cognitive delays. He has a behavioral disorder. He has a language processing disorder. He has a generalized anxiety disorder. Wait, we still haven't ruled out autism. He may have autism. He has Tourette's Syndrome and OCD and probable ADHD...but you have had him tested for autism, right?" Two years of laying awake at night and wondering, getting on the internet, surfing websites and blogs and checking off symptoms...chasing that diagnosis.
But the diagnosis does not matter, except for the fact that an actual diagnosis opens up doors for resources that our son will need. But in our daily life, his diagnosis is really secondary compared to actually dealing with the outcomes of the diagnosis. It may be the reason, but not the excuse.
A little less talk...and a lot more action. It's sort of become the motto around here, sometimes actually sung out loud when we realize that our son has had a fantastic day, sometimes muttered under our breath when Junior loses it and we want to lose it, too. But we don't. Mostly.
Something else that is life-changing? We have been sleeping like babies.
Meow.
