As regular readers will know: I have two children diagnosed with Aspergers Syndrome. And I’ve written many times that they are polar opposites in how they present. I have read a lot of blogs that say that parents like me are being unfair to the autistic community by presenting the negative side of autism.
And I know that it’s not everybody else’s autism but this is our story.
Some parents may have a “Lucas” type of aspie in which case – they may see this as an unfair portrayal, but I also have a “Harley” and other parents of Harley’s will know where I’m coming from.
I’ve asked the question before: What Kind Do You Have? because I know from personal experience that extreme anxiety, aggression, anger and explosive behaviour are not always present in every child on the spectrum. But it is VERY present in one of mine and not in the other.
Everybody knows that once a month, most men walk on egg-shells around their wives, girlfriends or teenaged daughters right? Right?
I don’t need to go into specifics, but you all know what I mean when I say that some words or actions are just triggers that could potentially cause a major explosion. And most of you reading this are in fact one of these women that need to be given a wide berth every four weeks or so.
Well, this is a really ideal way of explaining what life is like when you have a child with high anxiety and aggression issues related to their particular brand of autism.
But the similarities end here because, this doesn’t just occur monthly. And its not able to be predicted with a calendar. This is far more constant than that and often far more volatile too. The end is not in sight and there is no 3 weeks “normal” period in between.
Now don’t get me wrong; I absolutely love my boy to bits but honestly, sometimes, it feels like we are living with a bunch of moody teenage girls who are all cycling one after the other. There is no reprieve.
And other times it’s like we reside in a constant combat zone and the associated stress levels are constantly at an all time high in this household.
It’s why I believe that like a lot of parents of children on the spectrum feel like they live in the middle of a war zone. Like they have been thrust onto the front line and why they long for someone or something to pull them out of the metaphorical trench.
Because there really is NO break at all.
Anyone can avoid particular subjects or people for a short time but when you’re in it 24/7: there aren’t any down times.
I was sitting down having a deep and serious conversation with Mr Patient recently and we were trying to figure out why we seem to be always teetering on the verge of complete mental meltdown ourselves, and why the simplest things seem to set us off so much more than they really should.
We wondered aloud why we become so unsettled and angry by little things that other parents are seemingly unaffected by.
Because, the thing is; we know that not all behavioural related childhood traits are autism specific. We are aware that all kids have moments of defiance and pushing their boundaries but we’ve also noticed that other parents don’t seem to be pulling their hair out in utter frustration over the little things as often as we do. They seem to be able to shake it off a lot more easily.
And we figured that it’s got a lot to do with their stress ratings.
Let me explain: Between us, we came up with the stress-o-meter as a way to help each other understand exactly where we are at. I’m sure that this is an age old technique that has some fancy psychology term, but we are simple folk and have found that this is what works for us.
Think of a long straight line. At one end of this line is a 5 and at the other is a zero and the goal is to stay aware of where we are sitting on that line at all times.
So, level 0-1 is ideally where we’d all like to remain but life often throws curve balls and many of us find ourselves reaching 3′s, 4′s and sometimes a 5.
Everyone has stress and everyone varies at their level on this meter but honestly-for us, it feels like we hover somewhere between 4 and 5 at all times. We admitted that we rarely if ever get down to a 2 and almost never on level 1.
And prolonged exposure to stress often affects your ability to move lower on the line. I see it in my own Mum when she comes to stay. She arrives on a healthy zero and goes home somewhere between a 3 and 4 herself. By the end of her visit she is often asking things like; “Is it bedtime for them yet”?
And this makes me feel a whole lot better. Because it means that we are not the only ones who find it tough going here.
And I think that it’s got a LOT to do with how much time you spend dwelling in the trench and how much time you allow yourself or are permitted to climb out.
But here’s the thing. Climbing out is not always as easy as you would think.
Some days we really believe that we deserve to be in that trench. We become big martyrs and tell ourselves that we aren’t doing everything possible for our children if we aren’t thinking about ways to help them 24/7.
We wrongly tell ourselves that any times spent doing anything non-autism related is time wasted that should have been spent on helping our child to better navigate this big bad world.
It’s like mother guilt only a hundred times more.
But this is not the only reason that some of us dwell in the trenches.
Sometimes, (and I can attest to this scenario a lot more than the former one), we honestly have no idea how on earth we are going to get out of the damn trench because it’s all we know.
We become familiar with it and we start to carve out our own little niche. We tell ourselves that as long as we need to be there, we may as well make ourselves comfortable, and we gradually find ourselves slipping further and further down into the mire of that trench.
And the sound of gunfire rings louder as our stress levels rise with every coming day.
Because we haven’t seen sunlight for sometimes months, we start to become irritated by the smaller things that we would likely be able to block out or deal with if we knew it’s only going to be temporary.
But we know it’s not. We can’t see the end in sight. We can only see the (assumed) many years of heartache ahead of us. We’ve lost sight of the bigger picture.
We know that often there’s nothing to look forward to and that it’s difficult to take your eyes off the here and now and look beyond to the treasures that potentially lay ahead.
And some of us need a helping hand to pull them out of the trench. Like I did and still do.
If you’ve read this blog for a while you will have read that I myself have been diagnosed with clinical depression and am currently medicated to manage it. I have good days and my bad days and EVERYTHING in between!
I am one of those people who struggles to see the silver linings and can very easily sink because I simply forget how to swim. I often think that it’s impossible to climb out of the trench and I become overwhelmed and exhausted so much quicker than I really should.
But God knows this and has placed people around me who are able to help keep me afloat and help to pull me up when I find myself sinking into the pit again.
God is the one treading water whilst he hold my head above the crashing waves.
I still have that wretched self talk telling me that I don’t deserve it whenever I’m offered a break and I am overcome with emotion when someone does reach out, but I’m definitely getting MUCH better at this!
I have recently started walking with a close friend. Because sunshine boosts your vitamin D and sunshine also dries the mud in the trenches.
Laughter and friendship and being able to escape the war zone even once a week is incredibly important so I have promised myself that the self-talk is going to change.
I AM worthy, I AM capable and I will believe what God says about me NOT what my exhausted, tired and emotionally drained brain tells me to believe.
I’m allowing people to pull me out of the trench or inviting God to sit down in it with me and comfort me until I have the energy to climb out. Or let him give me a leg up
Either way….I KNOW I’m never alone.
Have a great weekend friends xx