Sunday 29 November 2015

On being called 'the weak one'



Max's behavioural problems have  dominated my life, since he was about 18 months old. That's 3 years of aggression, extreme hyperactivity, property damage, defiance, being deliberately antagonised, waking up at 430am and deflecting the missiles he throws at my head (I could go on, but you get the idea). 

He is extremely oppositional. It's not the usual defiance you'd expect from a child his age. It is EXTREME. It is constant. It requires a truck load of patience and creativity to deal with. I carefully choose my battles. I don't request something of him unless I have every intention of following it through. I avoid escalating situations into power struggles, because (paradoxically) this only reinforces his defiance. Convincing him to do something, requires the skill and tactic of a hostage negotiator. 

Max's brain injury, affects the left hemisphere of his brain. Which means he struggles to understand and retain language. Which means I repeat myself a lot. Like seriously. A LOT. For three years, I've been trying to teach him that we don't throw things at people. Yet, here we are, still apologising to random strangers who've almost been knocked unconscious by something Max threw. 

A day or even an hour with Max is hard work and completely draining for those who care for him. Yet, I am the person who has lived with this every single day, for the last 3 years. Some days, it's 14 hours of just me, Silvie and Max. If it weren't for my family, I'd have been committed to the cuckoo house a long time ago. 

I'm often told that "I'm the weak one", that "I shouldn't let him do this, that, blah, blah". A therapist who might spend an hour with him, can say "he listened when I told him". That's great. That's totally awesome that you're so talented at dealing with my son. Now, take him home with you and repeat your awesomeness for 14 hours a day, for the next three years. Then we'll talk. 

So many people, see me as 'weak' when they spend time with us. Some people say it directly, more often than not, it's implied. You know what? I agree. I AM the weak one, when it comes to managing Max's behaviour. Because I'm the person who's running this marathon and I need to survive. 

If that makes me weak, then make me a badge. I'll wear it with honour. Because if I don't survive, neither will Max. 



Saturday 17 October 2015

Why didn't you listen?






Why didn't you listen, when I told you things were getting worse? That the strategies weren't working. That I was often afraid of my own son. 

Why didn't you listen, when I tried to explain how relentless it was? How nothing seemed to help? You always cut me off mid-sentence. You never allowed me the air space to convey how extreme things were. 

Some of you told me it was just a 'boy thing'. Some of you told me 'he'd grow out of it'. Some of you told me stories about your own children. Some of you tried to convince me it was normal. You told me all the things I needed to be, to be his Mummy. You tried to send me to Parenting Classes. 

Every night I laid in bed, trying to remember all the things I needed to do, to be a better Mum. Stay calm, even when he's destroying the house, pelting shoes at your face, throwing rocks at cars, hitting people and breaking things. Don't give in, even though the battles are occurring every god damn minute of every god damn day. Laugh it off Faith, this is hilarious, have a sense of humour about it. You're too weak, you need to be stronger. YOU NEED TO BE STRONGER. THIS IS ALL YOUR FAULT. 

You finally listened, when I finally snapped. You said "I know it's hard but-" and I cut YOU off mid-sentence. I screamed at you, the words I've been screaming inside my head for the last few years "You don't know how hard it is. You have no idea how hard it is. It's not just 'hard', it's freakin' impossible. I can't keep living like this". You tried to talk. I didn't let you. I rambled hysterically for a good 5 minutes, before you managed to calm me down. 

That was the day you finally listened. You referred Max to the Psych Team. A few months later, we met with a Child Psychiatrist and a whole bunch of others from the Psych Team. They all agreed the problems were severe. A few sessions later, we have some answers. Severe ADHD and most likely Autism. He needs medication, (at least for now), sensory profiling, an ASD assessment and language assessments.

When I look at Max now through an Autism 'lens' it all makes so much sense. For years, we've been instructed to treat a chest infection, with a bandaid. That is why nothing ever worked. I'll get over it, but right now? I'm so god damn angry.

We could've been helping him a lot sooner, if only you'd listened. 


Monday 28 September 2015

To the people who heard my son call me a fuckhead



It was 9am on Sunday morning, when you heard my son calling me a fuckhead. You heard him say it several times. He said it every time he fell over. He said it every time he needed a drink. He said it aggressively. He said it loudly. I know you heard it. I could see how disgusted you were. 

Your disgusted expression, is one I'm accustomed to seeing. I see it multiple times a day. Sometimes people come and tell me what he's saying. Sometimes I get unsolicited advice from total strangers. Mostly though, people sit back and give us the stink eye.

I know what you're thinking. You're thinking, why does she let him get away with that? Why isn't she giving him some stern warnings? Why isn't she dragging him back to the car and saying "Wait until your father hears about this"?. I know that 5 years ago, I would've thought that too. Unfortunately, those things would only cause his behaviour to escalate. 

Your next thoughts, would be that this woman is such a bad mother. Maybe she's a drug addict. Maybe she's just lazy. This kid needs some discipline. That woman shouldn't be a mother. 

What you don't know, is that my son has a brain injury and his behaviour has been out of control since he was 14 months old. Maybe you read generic parenting articles your friends post on Facebook. Maybe those articles give you all the ideas you need to keep your precious little snowflake in line. 

I read research articles, books about brain injuries and email specialists from various parts of the world. We have appointments with Psychiatrists and Psychologists. He's 4 and a half years old, so far, nothing I've done and no one we've seen, has been able to make things better. Some days, it is relentless. Our 'good' days, would be a nightmare for most. 

Perhaps, you think I shouldn't take my son to public places, when he's so wild. For the sake of other people, I should probably just lock him in a cage at home. That's much better right? But, skating is his outlet. What you witnessed, was actually the most calm he'd been all morning. 

People think, the day of Max's stroke, was probably the worst day of my life, but it wasn't. That honour belongs to every single day, which has come after. Have you ever lived with an out of control child? He assaults me and his sister every day. He destroys our house and he destroys my parents house. If there really is a hell, then I am living in it. 

I saw my son say hello to you. I saw you look down and ignore him. If you'd smiled and said hello back, you may have learnt, that my son is not a monster. Despite what you witnessed, he is also funny, charming, sweet and exceptionally endearing. It's impossible not to love him, if you can look past the other stuff. 

This letter is not just for you, it's for every person who has stared, laughed or judged us over the years. I hope, that if you ever see us again, you might be able to smile at us. Because such a simple gesture of kindness, helps me to keep putting one foot, in front of the other. 

I hope the rest of your Sunday, was an improvement on the time you spent in our presence. 

Sincerely, 
That fuckhead mother from the Skate Park

Sunday 9 August 2015

The one where she said "I'm done"

I didn't know there was truly such as thing as a 'nervous breakdown', until it happened to me. For years, I thought I could muddle through all this stress indefinitely, allowing myself to have a cry and then move on with it. I never expected things to build to the point, where I'd explode and break down and then wake up the next day STILL shaking and say "I'm done". 

It happened one weekend, about 6 weeks ago, when I was at work. At work. The place which has long been my haven, the place I go to have some 'me time'. In hindsight, alarm bells should've been ringing the moment I started considering an acute psychiatric in-patient unit 'respite'. Especially when I'm often the person in charge, with minimal support from those in the Senior management stratosphere. I love my job, I have someone/s yelling at me all week and by the weekend, I'm ready to at least get paid to be someone's punching bag. 

On this particular weekend, I was brain mushed by the end of my Saturday evening shift. Nothing major, just the cumulative effect of arrogant doctors and benign interruptions every 3.2 seconds. I'd been awake since 630am (a sleep in) and I just wanted to crawl into bed to scrape a few hours of sleep in, before I had to get up and do it all again the next day. But the sleep fairies weren't kind that night, the sleep fairies put in an epic combined effort and gave me precisely one hour of unbroken sleep. And nobody helped. 

I contemplated calling in sick that morning. But I didn't. There was no one else to be in-charge and I didn't want to disappoint my boss. Instead, I skulled cold instant coffee, whilst Max screamed and screamed, begging me not to go to work. He cried so hard, he vomited. He's never cared that much about me going to work and it concerned me, that he was suddenly so anxious. I think I cried the entire way to work. 

Most of my colleagues were kind to me that morning and so were our patients. I needed that. I needed everyone around me to just be nice or at least kinda nice. Because I felt completely broken. I was so tired, I was confused, and felt almost drunk. But I tried (gosh darn it, I tried so hard) to keep myself together, so I could finish off the shift. Not everyone was understanding of the fact that I was struggling. It continues to surprise me, in a profession where we care for those with mental illness, there are people who think it's ok to be a complete dick to their colleagues. Especially when their colleague has begged them repeatedly to ease off. It was those people, relentless in their complete dickness, who pushed me to snap. I was late getting home from work that day, and I got in trouble for that too.

I snapped so hard that day, I was still crying the next day. And the day after that. My heart wouldn't stop racing,my hands wouldn't stop shaking and the only words I could find to explain myself were "I'm done". I'm done with being abused. I'm done with accomodating people's dickness. I'm done with everything being so god damned hard. 

6 weeks later, I wish I could tell you that I'd fixed every single problem and resolved every single stress, but it's still a work in progress. I'm finding simple things completely overwhelming, because it turns out, rock bottom isn't an easy place to climb back from. 

But we'll get there. 

Sunday 11 January 2015

The things I'll miss

People say some annoying stuff when you have a new baby and the thing which irked me the most this time around was 'make the most of every moment'. Really? Every. Single. Moment? Even when I'm elbow deep in poop at 2am? I'm meant to make the most of that? How's about you piss off.

Adjusting to a new little person in the house was HARD and something I initially struggled with more than I expected. I found myself feeling depressed and overwhelmed for awhile. The 'make the most of every moment' brigade drove me bat shit crazy.

Sure, I completely understand that my children will only be little for such a short time. Believe me, when Max and Silvie are angsty teens who don't wanna know me, my heart will yearn for the life I have now. But that doesn't mean I have to love every single shitty moment, because quite frankly, sometimes they suck.

I do however, make the most of every single beautiful moment we share, no matter how fleeting they may be. Sometimes, I even hear myself think 'I'm really going to miss that someday'. Like the big gummy smile Silvie gives me when she first wakes up and hasn't realised she's hungry yet. Makes me melt. Even at 2am.

I'm going to miss the laugh I get (on the inside) when Max does something utterly absurd to his sister, while she's blissfully unaware. "Max, why is there a muesli bar on Silvies head? Please don't stick your finger up her nose. Why are you licking your sister? Don't fart on the baby!" I know the day will come soon enough when she'll crack it with her overzealous big brother. For now, I bask in her babylicious tolerance.

I'm going to miss the way Max pronounces the word "look" as "yook". Actually, there are heaps of toddler words I'll miss, but 'yook' is my favourite because there's something magical about seeing the world through your child's eyes. The excitement that something completely mundane (to me), can bring to him, coupled with a really cute word just makes me SWOON. "Yook Mummy, yook, an ant! Yook mummy, dog do poo! Yook Mummy, train/car/digger/truck!". Yook here Max, don't let that speech therapist teach you how to say the word properly ok?
(Not yet anyway. Mummy isn't ready)

I'm going to miss the way Max absolutely has to 'help' making toast every morning. He gets Vegemite from here to Christchurch, then insists I say a big, emphatic "thanks for helping Max"

I'm going to miss the frantic head shaking, sucking thing Silvie does when she's hungry. I call it a 'snuzzle'. I'm going to miss the way her head wobbles like Stevie Wonder when she tries to hold it up for too long. I going to miss the way she smooches her face into my neck when she's tired. I'm going to miss the blissed out little facial expression she gets when I let the water run over her head in the shower.

Most of all, one day I'm going to miss crawling into bed at night and seeing the pair of them fast asleep next to me. Because that is when I love them the most. When the house is quiet and the chaos of the day is over. I just stare at their beautiful faces and wonder what they're dreaming about. Then I wonder how I ever lived without them.

The one thing I won't miss? The 430am wake ups. I won't miss those mofos. Not one. Single. Bit.






Friday 2 January 2015

Dear Silvie and Maxwell

A friend of mine writes a popular blog about her life with 2 small children. Every few months she writes a post in the form of a letter to each of her kids, telling them about their personalities (etc) at that exact point in time. I've always loved reading those posts and have been telling myself that I should do the same thing. Now that I have 2 children, I feel it's even more paramount that I capture these things. Silvie is changing every day and I'm starting to see glimpses of her personality. I fear I'll forget these moments, if I don't write them down.

Silvie Lena
You are nearly 10 weeks old. Last night I looked at the photos from the day you were born and I was staggered by how much you've changed already. You were born with lots of thick brown hair and I thought you were absolutely beautiful. Looking back, you actually looked like an angry, red potato.

You LOVE to sleep but you're totally unpredictable. Sometimes you nap for 4+ hours during the day, sometimes it's 40 minutes. Some days, this totally does my head in. I wish I could predict how long you were going to sleep for because this seems to make or break our day. You don't like being awake much longer than an hour, you end up overtired ALL the time and then it's impossible to get you to sleep. I don't know how many hours I've spent patting your back and stroking your hair (I'm actually doing it right now).

You spent most of your first 6 weeks either in my arms or strapped to my chest in a baby carrier. You almost always woke up if I tried to put you down. You even spent overnight in my arms, because you slept so well that way and I was so desperate to sleep. I knew I had to change things, when it started taking me hours to resettle you, if I put you down for even a few minutes. This is still a work in progress. Admittedly, I still resort to holding you at 2am if you're unsettled. Because you know. 2am.

You absolutely love your Mumma and days can go by where you won't let anyone else near you. Sometimes I find this overwhelming, but I know this time passes too quickly, so I really try to make the most of it.

You've introduced me to 'arsenic hour', though I suspect 'arsenic hour' was named by the same genius who coined 'morning sickness'. I now know, that every afternoon/evening, you will completely lose your shiz somewhere between 3pm and 10pm. It doesn't seem to matter whether you've had a busy day, or a quiet one, it just happens. I'm trying to accept that this is going to happen no matter what I do. But I really can't wait for this stage to pass.
(You're currently 2 hours into arsenic hour right now. Please go to sleep)

Maxwell Hendrix

You are 3 years and 9 months old. You have significant language delays but irrespective of this, YOU NEVER STOP TALKING. If I could compare you to a movie character, you'd be 'Donkey' from Shrek. You ALWAYS have something to say. Lately, you've also started singing a lot but you muddle up your songs and create 'Max Medleys'. Today, I listened to you in the car as you sang 'Twinkle Twinkle Little Star', which soon became 'The Wheels on the Bus', which somehow morphed into 'Frosty the Snowman' (and I'm sure I heard a Pirate song in there somewhere). You make me laugh so much.

You absolutely will not play by yourself. You follow me everywhere around the house saying "You come play with me?". I love playing with you, even though you are utterly exhausting! You actually don't care who plays with you, you approach every person you meet. Strangers at the park, people in the supermarket, pretty much anyone who makes eye contact with you. You are NOT shy. You're the life of every social gathering. You love to make people laugh.

You also enjoy making people angry. It's incredibly frustrating to live with this sometimes. You love to illicit a reaction and you really don't care if it's a negative one. After Silvie was born, you were completely out of control for awhile. I fully expected this to happen, but that didn't make it any easier. You smashed up the house nearly every day, you laughed maniacally when you saw how much it bothered me, you chanted "cry Mumma, CRY!" and you laughed even harder if I did. I NEVER want to relive that time again.

Lately, I've seen a beautiful change in you. You're trying so hard to use your 'listening ears' and your 'noggin' (aka, your brain). Sometimes I see you stop and think before you do something silly. Even though you often choose the less than desirable behaviour, I'm so pleased to see you trying. You have a keen interest in so many things- trains, cars, motorbikes, gardening, cooking, swimming, music, animals. I love watching you trying to make sense of the world.

Welcome to the year 2015 Maxwell and Silvie, I'm so excited you chose me to be your Mumma. I can't wait to spend this new year with you both xxxx

Sweet dreams.