Saturday, August 22, 2015

Mental Illness Can Take a Toll on Mental Health

We have known for a long time. I have known, but was certainly in denial. I wanted to blame and I wanted to be right...and be better. But, instinctively, and from experience, I knew better. 

Just over a month ago, we finally, finally got a diagnosis for my 5 year old stepson. After years of struggle at home, an entire school year of notes home from pre-school, a visit to the pediatrician, attending the NAMI Basics class, getting a therapist, a psychiatrist and a complete workup of tests, we were told that he has ADHD and is on the Autism spectrum, particularly with sensory issues, obsession, rigid thinking, and blind rage. 

My stepson has a twin sister. They were both born 3 months early, and spent a very, very long time in the NICU. My husband & I started dating seriously just after the twins had their first birthday. At that point, they were babies with special needs. Our little princess had a g-button for a while, and then a g-tube in her belly until after they turned two. She didn't even know how to swallow until around age two, and we had to train her with little sips of apple juice and water in a syringe or drops from a straw. They are both extremely small for their age, both in about the one percentile in terms of growth (meaning more than 99% of kids their age are bigger than them). We are no strangers to therapy. They had occupational therapy, physical therapy, speech therapy, and even a nutritionist. 

With all of that, we expected life to always be a little more challenging for these two. What we didn't expect was what I think has been the hardest lesson yet; one I'm still wrestling with pretty much every other breath. Hubs & I heard this in our NAMI basics class, and I had to write it down, but it was pretty much seared into my brain as soon as I heard it. "You have to be the parent your child needs, not necessarily the parent you always imagined."

It's so obvious now, looking back. The signs were always there. You read about them, and you can recognize them. What they don't tell you is what it's really like to experience them. 


For instance, combing the internet for coping strategies after a particularly rough weekend, I came across this: http://nspt4kids.com/autism/autism-infographic/ 

It is SPOT. ON.

I can go down the list and check off just about every single bullet point. 

Except, those sound pretty manageable. I think, unless you have lived them, you might look at that list and imagine that those are all things you can control with a little structure, some rewards and incentives and solid discipline, right? Yeah, me too. Until they all started to manifest in the most horrifying ways. Horrifying might sound extreme, but when you're in the throes of it, it feels pretty damn extreme. 

Let me paint you a mental picture with finger paint and tears:

Life skills (getting dressed, toileting, brushing teeth, bathing):

Our little boy is potty trained. He practically potty trained himself. Except at night. Every night. Every. Single. Night. For 2 years, he peed the bed every night. He had gotten big enough that diapers didn't hold it, training pants didn't hold it. Every night he woke up soaked. Him, his pajamas, his covers, his sheets, everything. We tried having him use the bathroom often (every 20 minutes or so before bed and at least twice during the bedtime process). We tried cutting off drinks after supper. We tried letting him wear big boy underpants (which he wore all day every day with no issues or accidents) to bed, so maybe the sensation would wake him up. Nope. Exasperated, we had him sleep on his mattress protector every night so it was one less thing we had to wash. That's an extra 3 - 5 loads of laundry every week since we share custody with the twins' mom. That's a lot of added work for a dual-work family. Extra work = extra stress = less time to relax. If you find laundry relaxing, I'll give you my address. 

But wait, there's more! Yes, I'm serious. 

Last week he snuck out of bed to go pee and decided to squeeze at least half a tube of tooth paste all over the (freshly cleaned) bathroom counter, and then smear it around for good measure. "Maybe it's a sensory thing," someone said to me, trying to help me rationalize. Okay, maybe it is; it still fucking sucks. 

Yesterday, he decided to pee ALL OVER the bathroom. On the toilet, around the toilet, in the tub, around the tub, on the floor, and miraculously, a couple drops actually made it into the toilet.    "He has impulse control issues," my husband said. Totally true. The bathroom still smelled like piss while he sat in time out screaming, kicking the floor and punching himself in the face for it. Then, we thought, natural consequences! Yes! We are brilliant parents! So, we decided that instead of time out, he would clean it up himself. Except he then coiled his entire little body into a tight little ball of rage, screamed "NOOOOOOOO!!!" at the top of his lungs and continued to punch himself in the face. We still made him help clean it up. 
He is now not allowed to go to the bathroom for any reason unsupervised.

Requesting of preferred items/activities:

Yes, this is a hallmark. A red flag, if you will, of a child on the autism spectrum. What this neatly bulleted list doesn't tell you is that it's so obsessive and out of control that it's actually unbelievable. This child has been obsessed with things that spin since he was a baby. He used to stare up at the ceiling fan in awe, and when we would hold him, he'd reach for it like some kids reach for candy. The obsession mostly manifested itself to tires and wheels of all kinds. The obsession with wheels and the ADHD constant need for movement and action means that riding a bike is the single most exciting activity that this child has ever experienced. Ever. At the crack of dawn, before any child should even be awake, he will sit straight up and say "I just wanna ride my bike," before his eyes are even opened. And as soon as he gets out of bed. And as soon as he gets into the living room. Before he has breakfast, he's probably asked to ride his bike 10 - 20 times. During breakfast. After breakfast. If it's blazing hot. If it's freezing cold. In the middle of a thunder storm. The only thing that matters to mister one-track-mind is riding his bike. 

No amount of transition time, no number of gentle warnings, and almost no bribery (every once in a while a popsicle will do it) will get him to come in from riding his bike or prevent the fury that comes with "It's dark out and time to get ready for bed. We are done riding bikes tonight." 

Family Relationships:

This one is a trick! Sounds like maybe he doesn't like it when the cousins come over or something, huh? What it really means is that we walk a tightrope lined with eggshells, broken glass, and burning coals when he is around. Not just the hubs and me. The other kids, too; his twin sister and my 10 year old son from my first marriage. Both of the other kids get so frustrated that his behavior takes just about all of our time, effort, and attention (though we try desperately to give them their own special one-on-one time, too) and they get so exasperated being on the receiving end of his rage and destructive behavior, that we have noticed that both of them 1) blame him immediately for anything that could ever happen (a broken toy, a dripping faucet, etc.) and 2) they have no hesitations trying to get him in trouble. Because he is so difficult, so often, even things he does on accident sends both of the other kids tattling. Holy shit. I cannot even begin to describe how hard it is to validate their concerns when he's legitimately doing unacceptable things (i.e. we do not allow hitting or violence toward others at all...we have a zero tolerance policy), but to shoo them away when they are tattling just to get him in trouble. Oh. My. God. 

Then, there's the tension between us and the other kids. We can get so frazzled, that even the tiniest infraction on their part leads to one of us being too hard on the other kids. They love that. <insert sarcasm font>

Oh, also...my marriage. And my teeth. 

It's hard to imagine this fairy tale life (yes, I know that nobody really gets a fairy tale life, don't judge me for wanting one), or even a pleasant life when there is so much rage. All. The. Time. Naturally, it wears a person down. And when we are worn down, we sure do take it out on each other. We cry on each other's shoulders, too. But, we also snap at each other, we nag each other (okay, let's be honest, I'm the one who does the nagging), and we even ignore each other because sometimes we just need to dive into a book or our iPads to give ourselves a mental break. Do you know how hard it is to muster up the gusto to wanna have sex with someone when sometimes it feels like all you do is get on each other's nerves?? Hot! Wait, no, not hot at all. Ugh. I'd rather just sleep. 

Oh, and then there's this gnawing, totally unfair and totally shitty wife-like repetitive thought "My life was so much simpler before. I don't know if I can stay married to this entirely overwhelming situation that sometimes feels more like a life sentence." Complete with full on resentment. Never fear, it's heaped with a big, fat, steaming pile of guilt. Because, "for better or for worse, in sickness and in health" didn't come with the disclaimer *unless your children become so difficult that it makes me question my sanity. Maybe your vows had those little escape clauses in them, but mine didn't. And I love my husband. Like, a lot. Like, a lot a lot. 

And talk about things that trip my trigger. Full disclosure here...I worry about my teeth. Because when that little ball of sensory-overloaded screaming rage shouts shit at me like "Oh no you most certainly will NOT!" or "STOP TALKIN' TO ME!" or "I'm not talkin' to you," or "LEAVE ME ALONE!!!" or the ever popular "NOOOOOOOOOOOOO!!!" complete with fists of fury, furrowed brows, and sometimes - lucky us - even spit, I catch myself gritting my teeth so hard it makes my jaw ache. 

This. This is what they DON'T tell you when they talk about dealing with kids with mental illness. They give you signs. They say things like "take care of yourself first," with helpful reminders of the flight attendant oxygen mask warning. 

Guess what...I DO! I take time for myself; hell, I even pamper myself with regular manicures & pedicures and even treated myself to a couple of massages in the last year. We have date nights. We spend time without the kids. I go out with my own friends & hubs goes out with his. We try to eat healthyish. We even just invested in an elliptical machine to make sure we get enough exercise. 

Somehow, all of that fades to black in the midst of "Holy fucking shit, he's in yet another blind rage - the second one of the day - and we have only been out of bed for two hours," drama. Counting to 10 or 100? I literally can't even. (In fact, I'm sure that's where this phrase originated...some exasperated parent who was so spent that they couldn't even form an intelligible sentence, but they knew, they just knew, they were at their wit's end.)

His therapist has given us tricks to help him return from the abyss. Some of them work like a charm, like rubbing his hands softly, almost like petting a dog. 

Here's where the ugly, selfish step monster voice creaks in. "BUT WHAT ABOUT ME?!! WHAT ABOUT US?! Is there a pill or a cream that will magically help US?!!??!! Is there?!!"

Nope. And it can feel pretty hopeless sometimes.

Wanna know something funny? I am an advocate, and I'm proud of that. I'm an active, outspoken advocate for mental health awareness and treatment! I get it. I have studied and researched and learned about all kinds of mental illness. I have two siblings who have suffered with bipolar disorder, one of whom actually took his own life. I even serve on the Board of Directors for my local NAMI chapter. I know that mental illnesses are as real as cancer or diabetes. In my heart of hearts, I know my frustration, though totally legit, isn't helpful or even fair. If our little guy's symptoms presented themselves as something that made him weak or vulnerable, it'd look and feel a lot different. But our kid doesn't have a casserole disease. He has one that's hard, even for us as parents, to separate the disease from the kid. 

So, our journey continues. We will keep trying therapy. We will try medicine (and don't you dare judge us for one damn second). We will try love and patience. Because that, my friends, is all we have right now. All we can do is just try. 

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