Humans have an innate need to control their environment. We control our environments in all different kinds of ways, sometimes even in ways we don't think about in terms of "control." Even if we're not a self-proclaimed "control-freak," we still exert control over things in our lives in order to keep things at a manageable level. We clean (control) our homes, our yards, our work spaces, our vehicles, and the things we use and wear. We manage (control) our finances by working for money, paying bills, budgeting, couponing, saving, and spending. We control our bodies through diet and exercise. We do whatever we can to manage every aspect of our lives in order to keep the calm, contain the clutter, and quell the chaos.
But what happens when control slips away and the management level is breaking the ceiling?
I see two typical responses to losing control. We either smile, throw caution to the wind, and go with the flow (although we still control the situation to some degree within reason.) Or, we buckle down and break out every tool we have to grab a hold of what we feel we're losing or have lost. We might show this vain attempt at control in extremes as we yell, scream, cry, or even physically try to manipulate the situation (or the people) we're dealing with. We might show it in more subtle ways, like pulling on the heavy duty rubber gloves and going to town with cleaners or oils or whatever we use to show dominance over our environment. Some kids with autism deal with sensory overload by doing things to control their environment. When they cannot control what's happening around them, they may exhibit odd behaviors, such as ordering their rooms, turning lights on and off, lining things up, collecting certain items in one place ... all of these things are ways for them to control something. Kids may dress or style their hair in outlandish ways because it is the only thing they can control in a home that is in chaos.
As a special-needs parent, there are so many things I do not have control over. Despite the things I try to manage at home or when we go out to limit sensory overload for Sam, I can't control when it hits or how hard it hits. Despite the fact that he has limited screen time, I can't control when he gets upset at something and screams, which is always super jarring. I jump every time, analyzing as quickly as possible what kind of scream it was. Is it just loud but still having fun? Is it because he's hurt somehow? Sometimes he just bursts into a room loudly, talking loudly, or laughing maniacally. He's not always upset, but it's usually always loud.
At nighttime, Sam often sleepwalks. Typically, he comes downstairs and comes into our room. Sometimes he bursts in, and sounds upset or is breathing really fast and hard like he's just had a nightmare, but other times he just comes in and stands there, his frame silhouetted against the soft lamp light shining behind him. Waking suddenly to that sight scares me to death every time. Then I scream, my husband yells, and Sam screams too. It's a whole thing. But I've noticed that as I fall asleep, I'm not completely devoting myself to going to sleep. He usually comes in not long after I retire to bed, after 11pm sometime. More rarely, he comes into our room in the absolute middle of the night, long after I've definitely fallen asleep. I am usually the one to get up and walk him back upstairs, tuck him back into his bed, and make sure nothing is on the floor in case he gets up again so he doesn't trip. He doesn't always remember that he does this, but it upsets him greatly when he does. I've realized that the reason I don't go to bed earlier, even if I'm tired, is because my brain and body are subconsciously waiting for him to come in so I can handle it while I'm still awake instead of being scared out of my sleep. I have an unusual ability to talk to myself or be aware of reality while I'm sleeping—I'm told I'm a lucid sleeper—I can tell myself it's just a dream and it's not real if the dream is scary and I can wake myself up. I can be dreaming, but also be aware of the fan noise in my room. And while I'm sleeping, I have actually analyzed the noises in my dream and considered whether or not Sam is coming down the stairs. I have woken myself up thinking I heard his feet pounding downstairs, but it was nothing.
I feel like I'm in a constant state of anxious waiting, whether I'm awake or falling asleep. This anxious waiting has a name most of us special needs parents already know well: hyper-vigilance. According to Wikipedia, "Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect activity. Hyper-vigilance may bring about a state of increased anxiety which can cause exhaustion."
Hyper-vigilance is a natural way our brains and bodies attempt to control our environment, and while it might instinctually be a positive thing, we typically feel its effects negatively.
So what happens when we're already on edge, waiting for something to happen, and then it does? Going back to the two responses I talked about earlier, some of us are able to handle what happens with more gentle ease than others. I am not in that camp. I am in the over-response camp. Read: loud camp. I have a very hard time dealing with the fact that I just woke up terrified I was about to be murdered by responding graciously and softly. My instincts kick in and I gasp loudly and yell and scare everyone else around me. When I'm relaxing and suddenly Sam screams, after I judge what kind of scream it is, I tend to get upset at him when I realize it's just over a video game. If he's in pain or is really upset about a situation, I'm much more able to handle it with patience and kindness than if it's over something I think is silly or arbitrary, even though I know it's important to him.
Hyper-vigilance causes a constant state of anxiety, and this leads to exhaustion. No one is in their best state of mind when they are anxious and over-tired. It seems natural to respond negatively to something because we've been on edge, whether we realize it or not, and when a response is demanded, I don't know about you, but the louder angry side tends to come out first more often than the sweeter, gentler side.
So what do we do about this? I'm not a professional by any means. But as a mom who struggles with these things, here is what I do, and maybe it will help you too. When the other shoe drops, and what you've been waiting for finally happens and a response is needed from you...
- Pray. Even something as simple as my own prayer most of the time, "Lord, help me to stay calm." And as you're figuring out what happened and how to respond, "Lord, give me wisdom. Help me know what he needs right now."
- Take a few deep breaths before uttering a word, if possible. Your brain is going to need the oxygen, especially if you're sleep-deprived already. You are no absolutely no help if you are upset and might yell when your child is in the middle of a meltdown, even if it's over a video game.
- Do what you need to do to calm your child down AFTER you yourself are calm enough to help. Do the bear-hug, or grab their weighted blanket, or lead them to their swing or bed, or whatever it is your child needs in order to calm down. But do that AFTER you are calm. Do it just like the flight attendants instruct you to: put on your own oxygen mask first before helping others. You can't help if you're not conscious (or in the right frame of mind.)
- If your child is verbal and is upset but is not in a sensory meltdown, and is able to communicate in conversation somehow, put your calm hat on and keep your voice low. If I raise my voice at all, Sam responds in kind and a meltdown isn't far behind.
- Throughout the day, pay attention to your body language and breathing. If you notice you cross your arms tightly or your shoulders are hunched, be aware of not only what that is communicating to others around you, but how it's making you feel. So many times, I have let out a long breath, not even realizing I had been holding it! Other times my neck was bothering me, and I dropped my hunched shoulders, which I didn't know I had been hunching. Be aware of your breathing. Take long deep breaths: breathe in for four counts, hold for six, let out for eight, hold for four, repeat. (This method is also helpful when a panic attack hits. Don't ask me how I know.)
We can't control what our kids do or necessarily how they do it. We certainly can't control their responses. But we can control our own.
If you have unhealthy habits in your life, or even if they're good habits (like cleaning), consider how these habits are either truly helpful to you and your family, or if they are causing anxiety or frustration in others, especially in your child with special needs, and how that might be impacting your daily life together, or might even be contributing to hyper-vigilance. There is such a thing as cleaning too much.Okay maybe not, but that's what I tell myself so I feel better about my home. Think about how you carry yourself, how you breathe, how you respond to crises in your home. How do you respond to your child when they start screaming out of the blue? What can you do to make a little change for the better so that next time, you're a calmer, gentler parent?
And if the overwhelm hits and you feel like all you can do is flail and scream in the moment, try to get to a closet or more private place and make the words of the Psalmist in chapter 61:1-2 your own: "From the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I." Then breathe in deep, and go be the parent God means for you to be, in His strength, in His grace, and with His love.