I’ve been pretty terrible at blogging this year. My heart just hasn’t been in it and I hate that almost everything that I have to write about is either negative or has a negative slant on it. I always told myself that I wasn’t going to become a ‘woe-is-me’ blogger but guess what? The life that we are currently living is hard. In fact, it is really damn hard and I am struggling to keep positive and optimistic with all that’s going on. Which is most of the reason that I’ve stayed away from the keyboard.
Paul admitted to me last week that he is half expecting to come home from work one day to find me gone and the children left to explain my absence. He has watched them gradually wear me down but instead of helping me – he steps back because HE can’t frickin’ cope either.
He’s not far off the mark to be honest, I have felt like leaving many times but would never do that to my children. As crazy as they have been driving me lately – they are still my world.
One thing is definite though – I need a damn holiday away from the aggression, the anger, the defiance, the disobedience and well, pretty much everything else as well. Term three has only got one week left and the kids are more than ready for the 2 week holiday break, but I am not even close to ready to have them home all by myself.
But I will survive because I have to. I simply do not have any other option.
But do you know what probably gets me the most? The fact that I have poured almost 6 years into researching, reading about, practising and implementing strategies and techniques to help my boys with things that they struggle with due to their autism but still, STILL I feel like I know absolutely nothing!
Every time I start a new unit on my course – I am reminded that there is still so much about autism that I do not yet know. It is vastly overwhelming and my head is swimming with information overload and I lack the ability to apply the head knowledge that I have to the appropriate situation(s). I feel as though we are operating in survival mode and treading water (once again).
I feel like one of those high-rise building window washers. I stand perched on the rickety scaffolding outside other people’s window ledges on the wrong side of the glass. I peer longingly into their lives through their dirty windows but all I can see is how perfect everything appears though the pane that I am cleaning with my own hard work -hard work that is rarely ever appreciated. I notice what these other people have, how they live and I feel lonely and overwhelmed by how far my family is from what everyone else seems to have. I am not jealous, but I am very aware that I am just looking in from the outside. I don’t fit in these kinds of worlds. I don’t belong in these scenarios.
I know that as I stand here balancing on the edge – I am not wearing a harness and that all I would have to do is take just one step backwards to end this pain once and for all.
But I also know that I am stronger than that. I remind myself that
“The reason we struggle with insecurities is because we are comparing our own behind-the-scenes with everyone else’s highlight reels” Ps. Steven Furtick
But even remembering that, I am aware that right now – things are beyond tough in this house.
Frankly – I’m tired of being told that “all parenting is hard”. Yes! Yes it is. I have never denied that nor have I implied that it’s not! But I react badly inside when I hear that phrase because what I’m hearing is: “Stop complaining – you’re not the only one who has challenges with your kids”.
But what people seem to forget (or not even realise) is that we are doing exactly what every other parent is doing AND THEN SOME. I’m so over hearing the words ‘boundaries, rules, expectations, challenges’, and other words that imply that our boys are so out of control because we are crappy parents who have dropped the ball. Don’t people think we’ve already tried all those things? Do people just assume that my kids are left to their own devices all the time and now we are reaping the benefits of that kind of neglect?
I mean seriously?
I sat in the foyer of church this morning with Paul crying because I feel that no one, NO ONE gets it. I am tired of people telling me “chin up” or “you’re a great mother” when they haven’t had to walk in our shoes or live in our house. Autism can be a nasty bitch and trying to explain it to someone who doesn’t live with it is akin to describing childbirth to a man. All you can tell him is “it hurts like hell but it’s worth it in the end”. Details and specifics are left unsaid because it would make him uncomfortable and it’s frankly disturbing. As sure as a man can empathise with you and a friend with your situation – they will never fully GET IT!
I have tried everything that I can think of to help my boys to manage their emotions, conquer their anxieties and overcome their behavioural difficulties, but sometimes – nothing works and you have to wave the white flag in surrender.
Well, I’m waving it madly these days but I am also using it to dry my tears and blow my nose. Not only have I taken off my “everything’s peachy” mask today, I have thrown it angrily on the ground, stomped on it and thrown it repeatedly at a brick wall.
I sit here typing admitting that I am exhausted. Mentally, physically and especially emotionally. I am tired. I am sleep-deprived and I am worn out from dancing the stupid autism dance. I don’t know all the steps and I have no frickin’ rhythm anyway.
I am angry that we are continually knocked back for any sort of respite and wondering day to day just how we are going to make it out alive. It’s one thing for people to tell me “you need a break” but it’s another thing entirely for that to actually happen.
Right now, my marriage is held together with Band-Aids that have been there so long that they’ve lost their adhesive properties and are just barely keeping us together. They no longer cover the ugly wounds or the scars – they aren’t really any use to us at all. To be truthful -I just don’t know if we are going to make it or not.
I didn’t write this to extract sympathy, to beg for help or to paint a nasty or critical description of autism, but to be 100% truthful and own the fact that right now – I am no help to anyone. (Which is also why I have decided to turn comments off on this particular post).
But through all this pain, this hurt, this exhaustion and this anger at injustice – one thing remains….and that is the faithfulness of my God who keeps me in the midst of the constant storms.
There is a story in the bible in Exodus 17 about Moses. When his hands were raised – the enemy was defeated but when they were lowered – the enemy triumphed. Moses became battle weary and unable to continue to hold up his hands but through the support of his friends Hur and Aaron who held up his hands until the battle was won, he got to witness Israel prevail.
And I believe that my friends who are praying into my situation and for my family are holding my hands up for me until the battle is over. Because from where I sit – this autism parenting gig is only getting harder and harder.