Inadequate.

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“But I struggle to pull together bits of my worth and tape them piece by tangled piece into something resembling a person.” 

I have never wanted anything as badly as I wanted to be your Mama. I dreamed about you, I cried for you and I fought for you. Then you were here, and you were unutterably perfect. You made me fierce, you made me brave and you made us a family. You dragged me over coals, you showed me this new world through your eyes. I cherish every beat your ridiculous heart has taken since I saw it flicker away on a screen with a probe I was emotionally ill-prepared for. But I got to see you so I didn’t care.

I have done this twice, I have watched flickers turn into limbs turn into features and then met that face in a perfect moment while repeating ‘Hello baby! Hello! Hello! I love you! Hello!’ Even though I tried really hard to say something more meaningful the second time it seemed I was a compulsive greeter. Which is fine because neither of you really cared. You were there mainly for the boob, which was completely understandable, and having some lady screech the same word at you and sob was probably distracting.

You’re both perfect. You’re both intensely strange little people, one who shouts out after dogs ‘You have a great waggy tail! Really great!’ and then looks at said dogs owner like ‘who the hell are you?’ when they chat to you. Plus another who insists that gumboots are practical footwear for every occasion. Including sleeping. You are joy and laughter all wrapped up in button noses and butterfly kisses with the occasional catastrophic meltdown.

Being your mama makes me feel more inadequate than I could have possibly imagined.

Because I really wanted to be good at this. I am fine with sacrifice, I am so fine with sacrifice. I am patient, kind, and I love you more than anybody will ever love you (I know eventually you’ll probably meet someone and maybe even create additional weirdos but pfft, I will still love you more and that’s just an indisputable fact because Mama) but I struggle to pull together bits of my worth and tape them piece by tangled piece into something resembling a person at least once a week.

This, as usual, has much more to do with me than it does you. This is about my perception of perfection and striving for something which a) doesn’t exist and b) is kinda fucked. This is about failing in public and dealing with strangers. This is about having a plan most mornings to make buckwheat pancakes and instead having three coffees because a child slept on my face. This is about reading articles about the importance of a back up plan when you’re a SAHM because divorce and realising that ‘write some shit about vampires because people love vampires’ is not an adequate back up plan and then giving my husband shifty eyes when he says he’s going to Bunnings.

This is about Mothering in a society that tells you ‘you need a village’ and then shows images of mothers who probably just needed a village, and instead wound up on social media at their lowest moment with their parenting and their hearts open to flagellation. This is about trust, and faith, and how I trust you so much to tell me what you need in some form or another and then get told that I’m pandering to you and you’ll get over it. This is about my complete confusion in raising you in this world neither of us can control or even interpret sometimes, and wanting to just sit down and watch The Little Mermaid with you and explain why it’s sexist and marrying a prince is probably less cool than being a mermaid but still sing along to ‘Under The Sea.’

This is about going ‘yeah, he’s Autistic’ with varying degrees of defiance and warning in my voice because I wish I could say it the same way I go ‘yeah, he’s tall’ but I never quite know what response I’ll get.

I live in dichotomy, and I can’t figure out if I’m giving you either an incredibly valuable childhood or a really shitty role model who is devoid of reasonable back up plans. I’m lucky enough to be a SAHM, but I’m still conflicted about being lucky enough to be a SAHM because there is no other job I’ve done where I’ve gotten so little feedback or been so aware of the impossible expectations placed on me. The most response I get from raising you both is a) you’re growing because I have to keep buying clothes and b) your grandparents really like you.

I’m drowning in being a mama and it’s so weird that I’m laughing while I’m doing it. I try and think of the future, of being on my death bed (I’m so fucking chirpy!) of the things I will find valuable and the steps I’ve left behind me – and of course my family comes first. Then I wonder if I’ll remember the day I hid under the bed to write emails or that sinking feeling when a urine-soaked child crab walks up to you and you know you don’t have spare clothes. The failures stay with me too.

There is an emotional labour to this mothering thing that I don’t think ever ends, a continual outpouring, pleading, joy and a few ‘I can’t do this’ rendings. I just have to trust that this inadequacy I live in, this filtering I do of what to expose you to and what to protect you from even whilst some barbs hit me exactly where it hurts – I need to figure out how to live in this.

So yes, I love this life, but I feel so inadequate.

And yet, every night I tiptoe into your bedrooms, kiss your sweet faces and compulsively say ‘Good night, good night, I love you! Good night!’

 

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That Child Needs Consequences: What You Don’t See.

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No-one is born scared or ashamed, it is something we are taught – that there are bits of ourselves that are bad, worthless and should be kept hidden. We are told to give our children consequences, but what about the unintentional ones? What about the consequences that teach them they’re incapable when they’re still learning, or the ones that teach them they’re bad and disrespectful when they’re still figuring out what respect looks like. Children learn from consequences, yes, but not all consequences are equal.

I loved books as a child. My parents would buy ‘life lesson’ books, and with hope in their hearts they would place them on the shelves and trust that eventually their children would stop jumping on the furniture while they napped on Saturday afternoons. I remember reading about Susie, whose Mummy thoughtfully made biscuits one day. Susie climbed up on a chair to reach the cooling biscuits and CRASH! Biscuits and Susie were both crushed. Susie was contrite, she apologized and was forgiven. These books always ended with the same sentiment ‘and Susie NEVER disobeyed her Mummy and Daddy again.’

I always disobeyed Mummy and Daddy again. Then I was given consequences. Those consequences hurt.

Even at the tender age of five, I recall listening to those books and feeling a mixture of shame and awe at these children who demonstrated such majestic self-control, while I obviously possessed none. I would make up my mind to do better, and I would fail. Particularly when there were biscuits involved. While these books are clearly from another era, the sentiment still exists. Children should learn appropriate behavior quickly and effectively. Otherwise, there will be consequences!

Consequences are not linear, we cannot control what children learn and what they don’t. There is no direct relationship between spanking or yelling at a child (a commonly held strategy for ‘teaching children’) and subsequent behavior. Children are emotional beings and they throw their own interpretations around. We’re not handing them resilience and respect through spanking or yelling, we’re teaching them how to be violent. Altschul, Lee & Gershoff (2016) found that spanking was associated with increases in child aggression over time, above and beyond initial ‘expected child aggression.’ Parents weren’t trying to control an aggressive child; they had created an aggressive child, and the more they spanked the angrier the child got. When children get pushed out of the way for being slow or tutted at for running in public, we’re not teaching them how to behave in public spaces – we’re potentially teaching them it’s ok to push people who annoy you.

Words, unsurprisingly, can be worse (*heavy sigh*). Grille (2002) found that phrases thought to be relatively harmless (eg, You always do this! You’re so lazy!) have long lasting consequences to a child, often showing up as shame and low self-esteem years later. The words we use to describe children often become the words they use to describe themselves. Shellenbarger (2014) found that yelling was damaging when it was a personal attack, calling attention to a child’s faults rather then the situation. There is always a difference between a child’s behavior and who they are, and understanding this distinction can be the difference between shutting down a conversation by saying ‘Bad Boy!’ and opening one up with ‘Are you sure that was the right decision?’ Shaming children is particularly insidious, because unlike anger or fear, shame doesn’t have a physical emotional outlet (Grille, 2002). We can’t cry shame away, or shout it away, it doesn’t go out – it goes in, into our minds, into our hearts and there it sits. Waiting.

My autistic son has consequences, but I don’t always get a say in them and this breaks my heart. We went on holiday a little while ago, and on the last day we were lining up, waiting to collect our luggage and go home. Everyone was tired and a bit grumpy. My son climbed into a woman’s chair after she left. His back was to the world and he’d curled his head down as far as it would go, blocking out as much of the noise and the light as he could. Self-regulating. But she came back. She asked him to move, it was her chair and she was tired. Ok. I put a hand on his back and whispered to him. ‘No!’ he yelled. ‘Hurry up’ she said. He curled tighter. Then he climbed into my arms, pushed his head into my neck and screamed and screamed and screamed. ‘What a bad boy,’ she said, ‘he needs consequences.’ Later, he whispered to me ‘Am I bad? Everyone was looking at me.’ So yes, he has consequences, he has shame, and it’s my job to take these unintentional consequences and turn them into something approaching resilience. My job to shatter them without shattering him.

I am not a perfect parent, some days not even an ok parent, I fail, and I make mistakes. I have bribed and yelled. I have three loads of laundry to do, a freezer full of oven chips, a habit of recklessly throwing things labeled ‘do not put in dryer’ into the dryer, and an unshakeable belief that baked beans are a nutritious dinner. However I try to be aware of the unintentional consequences I hand my own children and those other children we meet as we go about our lives. I will not describe any of them as naughty, or bad, or selfish. I will not make predictions regarding their future because I do not own a crystal ball and if I did the cats would knock it off the table anyway. I know what shame feels like; I know how it sits heavy in your heart and the lies it tells you about your worth. I will not contribute to that. Fear and shame don’t have to be a part of consequences, only learning does.

Altschul, I., Lee, S. J. and Gershoff, E. T. (2016), Hugs, Not Hits: Warmth and Spanking as Predictors of Child Social Competence. Journal of Marriage and Family, 78: 695–714. doi: 10.1111/jomf.1230

Grille, R. (2002). Good Children – At What Price? Retrieved from http://www.naturalchild.org/robin_grille/good_children.html

Shellenbarger, S. (2014). Talking to your child after you yell. Retrieved fromhttp://www.wsj.com/articles/SB10001424052702304691904579348773978001590

Labelling Autism: An Origin Story.

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Choose your labels carefully.

I don’t know if it’s because he was my first, or because I’m the kind of person who checks the doors four times before going to bed then wakes up my husband to ask ‘Have you checked the doors?’ but I wasn’t entirely relaxed around my son. He is fire, and power and passion. He smiles with his entire body. I am in awe of this boy who runs down hills with his arms outstretched and screams ‘TOO FAST!’ in between the laughing. But, there was tension hovering between us.

He was the Baby Who Did Not Sleep. He was the Toddler Who Did Not Stop Moving. He was the Boy Who Was Loud. He was the Boy Other Parents Talked About.

He was unpredictable. He loathed the things we’d thought he’d love. He didn’t talk. He didn’t stop talking. He didn’t want to be held. He only wanted to be held. We begged ‘How do you feel? What do you want? What’s going on?’ but he only twisted in on himself, or gave us the answer he thought we wanted. ‘I’m HAPPY!’ he’d scream, fists curled and body shaking. We provided our own explanations for this boy we could not understand by pulling things from various incidents (he was tired/he was hungry/he’s sensitive/he’s spirited/he’s anxious/I didn’t really like that person either/that pasta was shit). We knew we weren’t really seeing him though, he was right there and we just weren’t getting it. Whilst I loved him more than I could ever imagine loving anyone ever, unease was strumming through our relationship. Then one day I googled Autism Spectrum Disorder and the penny dropped. Boom.

In some ways his diagnosis was nothing to do with him. He continued being himself, just as he’d always done. It was my husband and I who really benefitted. Finally we could see him. We weren’t so much handed a letter of diagnosis as a letter of ‘Hey guys chill the hell out, this is your kid and he’s fine, he’s just autistic.’ We stopped freaking out about dinner not looking like eating hot food at the table all together and accepted that dinner looked like rolling around the floor eating frozen peas. I stopped trying to have endless conversations about his feelings and started looking at what his actual communication was. He was still fire, and power and passion, but I was no longer tense. I got him. I finally understood my child.

We told people. Some people were surprised and others were highly unsurprised. The day we got the official diagnosis we made him a cake to celebrate his different brain. It was not all cake though, the more I researched and the more people I told the more I was informed I had no right to celebrate my autistic kid.

We were told to expect a neurotypical child and that anything less was a loss. We were told that disability was scary, and that having a disabled child was worth grieving over. We were told his future was uncertain, that autistic people struggled with finding relationships and jobs. We were told he would be shunned, or bullied, and that we should be grateful if people remained our friends in spite of our child. We were told most people would leave. We were told we would be lonely, our family damaged. We were told he would never fit in and needed to be rescued. We were told we were bad parents. We were told he didn’t look autistic and all he really needed was discipline. We were asked ‘Do you really want to tell people? Do you really want to label him, with all of THAT?’ That being all the ways society would see him, all the deficits my beautiful four year old apparently had.

Yes, we said. We do. Sign me up bitches.

All of that crap is exactly why we labelled him. Because it’s time for all of that crap to be gone, and that can only happen when we know exactly how wrong it is. Everyone else needs to get the chill the hell out letter too – it’s not terrifying, it’s not awful, it’s just autism; and it looks like a bunch of different things because it’s a bunch of different people who are doing different things. Not one of those people is wrong, or inferior. We need people to see the proud parents of autistic kids, the happy autistic adults and the thriving autistic family – all of which exist in abundance.

Labels happen, I want to make sure my son gets the right one. I want him to get the label that empowers instead of the one which shames. I want him to know he’s autistic so others don’t tell him he’s broken. I want my kid to wield that label like a weapon. He knows he’s different; he shrugs when classmates watch him bear-walk into the room ‘Sometimes I just do stuff like that’ then they shrug too, and the world resumes spinning. The power of diagnosis is knowledge, he knows that part of the reason he is so valuable, and loved, and ridiculous is because he’s also autistic.

I have a favourite quote (yep, I’m totally that person) and I always thought I understood it perfectly. It has more meaning now.

“There is a vitality, a life force, an energy, a quickening that is translated through you into action, and because there is only one of you in all of time, this expression is unique. And if you block it, it will never exist through any other medium and it will be lost. The world will not have it.” -Martha Graham.

I don’t want my boy to think that what he brings to the world is not as valuable because of his neurology, I don’t want him to block it, because then it will be lost. Gone. I want him to keep his fire, his power and his passion;  and I want him to have the right label while doing it.

Do you know what you’re saying?

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We’ll all find a way.

I’m laughing because he’s laughing; he has a makeshift cat collar around his neck (yeah, really). He meows and rolls his shoulders, pushing them up and over whilst flexing his fingers. ‘Cats have paws, they use their paws for walking on’ he instructs the playground after school. He’s making his eyes big and sniffing the air.

‘Oh this is the boy with autism?’ What’s he doing?’ asks Lady at School,

‘He’s Autistic and he’s being a cat. He really gets into it.’ I’m smiling.

‘I’m so sorry, I’m sure it’s difficult.’ I stop smiling.

‘Nah man, cats are great.’

I walk away to defiantly scratch Cat Child behind the ear. He purrs.

I’m hurting and so angry I’m shaking, because Lady at School doesn’t get it. Please don’t tell me you’re sorry, especially not in front of this vibrant boy. You’re diminishing him, you’re dehumanizing him and you’re stating that this life and child I cherish is to be pitied.

What I want to do is challenge Lady at School: Would you change your child?

Would you take away a smidgen of the intensity they have? Their humour? Their love and astonishment at the minutiae of life? Would you excise the bits of them that make them yours, the bits that call you to be stronger and prouder than you expected to be? What would you extract from your child to make your life less difficult?

Even if this isn’t what you mean when you apologise to me for my sons existence, think carefully about the words.

Do you know what you’re saying?

It’s night-time and it’s quiet. Which is unusual, in our house. My husbands phone beeps and I watch his face harden in the darkness as he reads the message. He throws me the phone. ‘Have you heard of this cure?’ it reads, the letters are burning in the dark. ‘Are you going to reply?’ I ask, he sighs and runs his hands over his face a few times, a gesture of defeat. ‘No, it’s not worth it.’ I drift off to sleep with him still awake beside me.

How sad that we’ve learned this lesson already. That it’s not always worth it. When you send us links to cures, you’re not helping us – you’re hurting. You’re reminding us that you and other people see our child and our family as suffering. Maybe you see requiring help and suffering as the same thing?

The help we need is practical. We need people to understand that we stagger social events, we need days at home to rest in-between. We need people to understand that sometimes our son requires us, a substitute is not always acceptable. The list of people we trust to be that substitute is short (but those people are magnificent). We’re not interested in pouring time and energy into changing our son, we’d rather change your perceptions. Perhaps you think you’re helping? Trying to make our lives easier? Helping us is fantastic, we’re not interested in ‘cures for autism’ but I guarantee you can make a lasange that doesn’t suck as badly as mine.

Do you know what you’re saying?

A quick after school meeting. I’m talking to his teacher about how he’s going, are the things we discussed working? His need for regular sensory breaks (running like a maniac, usually), a safe squashy place he can hide in when things are noisy and respecting his need for thinking time instead of endless prompts.

‘Yes, he’s doing very well, so we’ll start dropping his breaks and see how he goes. It’s important he’s like the others.’

What I hear is: ‘Meeting his needs is working! He’s happy and enjoying himself. So lets fuck it up because basically, he’s still not normal.’

Is neurotypical really the only acceptable thing to be? What if he’s just not like the others, and never will be? He’s learning the ebbs and flows of his brain. He takes himself away when he needs to re-charge, and hurls himself into the middle of activities he’s excited by. He’s learning about himself, isn’t that the goal for all children? Just let him be autistic. Let him be successful and entranced and nervous and silly and autistic, let him be himself. Grant him the basic right to be acceptable just as he is, a right I don’t see any other prep parents defending for their kid.

Do you know what you’re saying?

He’s perfect, this kid of mine. But I’m getting tired of having to explain that to people. Please, think about what you’re saying.

 

Linking up with The Annoyed Thyroid here

 

 

Meltdowns: What I’m doing when you think I’m doing nothing.

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Connecting to your child requires constant work. Not all of that work is visible to other people. But it’s the invisible stuff, the deep down acceptance and tolerance of your maniac child that truly matters.

This is usually how the judgment from others goes. You’re out, in public, doing wondrous public things with your beloved cherubs. You have an exchange with your partner, chatting merrily. You may even get to finish a sentence. But then there’s a cry and you see your child in a puddle on the ground. You go over and you parent your child the best way you know how. You kneel down beside her, this grubby tear-stained cherub whose chest is doing those big gulping breaths and you hold her as she processes the trauma of sharing the slide. And then some complete wanker goes ‘Her kid won’t share the slide and she’s not even doing anything about it!’

Keyhole Judging – (you know if it has a name then it’s clearly a thing). You see a snapshot of someone’s life and draw wild conclusions, generally negative. For example, my child won’t share the slide so I may as well buy her first switchblade now. She can get menacing boots for Christmas.

Keyhole judging very much upsets me.

Hey bystanders! It is not that I’m doing nothing, it’s that you are seeing nothing!

If you want to correctly label the exchange it goes like this ‘So, she responded to her child with respect, and listened to her emotions and point of view and considered the context and any triggers that were around and she knew that she couldn’t listen at that point in time so she stayed close to her and connected in a meaningful way that didn’t send her into flight or fight. That Bitch!!’

I am so tired of having ‘peaceful parenting’ referred to as ‘doing nothing’ There is an insane amount of energy and effort expended in taking the road less travelled with your kid. The one that requires you to constantly label emotions and negotiate, and say shit like ‘It’s ok to be sad’ and ‘I can hear how upset you are’ as you are loving your child through their insistence that a broken cookie is the end of physics, geometry and the world as we know it.

My son is Autistic. This is not news. Sometimes it creates news because he’s also bloody hilarious, but I digress. We have been shopping with him (an excursion which I am one hundred percent positive has led to child puddled on floor scenario’s for every parent ever). We bought him an ice-cream. It was the wrong one. He wanted the orange one. He dropped to the ground like a goddamn stone, wrong ice-cream discarded and face crumpled like an accordion. He crawled into a corner of the shopping centre and curled up like a kitten. A sad, sweaty, wronged kitten. I sat down beside him.

People in shopping centres have opinions. They really do. A stranger saw the sad Boy and the melting ice-cream and inquired as to what was going on. ‘Wrong ice cream!’ I replied with a shrug. ‘And you’re letting him get away with it? You’re doing nothing?’

Fuck off I’m doing nothing, I’m managing my own emotions and modelling fucking emotional development. I’m filtering the looks from other people and constructing a social story in my head. I’m judging if it’s the right time to put a hand on my son’s back because it’s sometimes comforting and sometimes not, I’m making sure I’m beside him instead of in front of him because that can be confronting. I’m giving rage face to anyone that looks like they might intervene and fuck it all up and I’m getting the occasional you bloody well rock glance from other people who know exactly how much work goes into doing nothing. I’m providing a safe space, physically and emotionally for a sad boy and I’m doing it while sitting on the cold ground someone has probably walked on with poo shoes. I’m modulating my tone and I’m choosing my words carefully, I’m offering him a way in instead of shutting him out. I’m matching my breathing to his to help him slow shuddering breaths into deep peaceful ones. I’m looking for exits and figuring out the best way to present moving to a scared child who was doing excellently well in dealing with the lights, noise, movement and confusion of a busy shopping centre and who unfortunately was given the wrong ice cream.

There is no amount of tough love that can convince a child whose body and brain is telling him he’s in danger, that he is not in danger (Nason, 2016). What is this obsession with doing something? Sometimes nothing is magic. Sometimes it’s required. Sometimes it’s the only thing you can actually do. I have broken previously and bowed down to pressure to pick up an overwhelmed child and move them, or yelled at them when what I really wanted to do was crouch down beside him and say ‘let me know when you’re ready.’ The result is inevitably worse. Plus it was really only done to demonstrate to onlookers that I’m controlling my child, the worst parenting choice I can make. Doing nothing will never be a bad choice, even if you just use that time to sit quietly with your child and calm your own mind while you figure out what to do next. I have sat on shopping centre floors. I have held whispered conversations underneath cinema seats. I have described the action in a circus to a child hunched over in my lap who desperately wanted to see it, but couldn’t bear to watch it. I have climbed trees and stayed in parked cars. I have sat on steps outside classrooms and hidden in beanbags at family gatherings.

I DO NOT regret a single second of this.

I am trying to raise people who will not be like those bystanders, or other mothers who whisper when I whisk my child away to quietly talk about ‘appropriate behaviour’ instead of the public flagellation they consider their due. I am no longer interested in pandering to the feelings of bystanders when my children, my (occasionally) angelic children are crying their hearts out. This is the long haul, when we accept all emotions and actually process them then the work eventually gets less. Labelling and accepting provides an extra link between feeling and doing, that link is thinking (Lieberman et al., 2007). It stops knee jerk reactions and helps us consider context and consequences when making decisions (Lieberman, Inagaki, Tabibnia & Crockett, 2011). It helps us know why we do things, and prevents scenarios like looking around at the broken dishes and thinking ‘crap, I actually liked that set.’

With each practiced time, doing nothing during a meltdown gets easier. The fear is less, the trust is more. The doing nothing leaves space for so many other things to happen. More important things than demonstrating control over a child. So if you see a parent doing nothing with their child, just know how much effort that nothing is taking up. I guarantee it’s more valuable and worthwhile in the long term than doing something.

References (oh hush I know you love them).

Lieberman, M. D., Eisenberger, N. I., Crockett, M. J., Tom, S., Pfeifer, J. H., Way, B. M. (2007). Putting feelings into words: Affect labeling disrupts amygdala activity to affective stimuli. Psychological Science, 18, 421-428.

Lieberman, M. D., Inagaki, T. K., Tabibnia, G., & Crockett, M. J. (2011). Subjective responses to emotional stimuli during labeling, reappraisal, and distraction. Emotion, 3, 468-480.

Nason, B. (2016). Autism Discussion Page: Don’t Punish Meltdowns! Retrieved from https://www.facebook.com/autismdiscussionpage/?fref=ts

Linking up with The Annoyed Thyroid for Down the Rabbit Hole here

 

 

 

 

 

 

 

 

The Hardest Part is not my Kid.

Sometimes I get asked, or it’s assumed, that my life is hard. I think about my life. The good bits and the bad bits, and I don’t even know how it’s different.

That’s the thing.

I can’t imagine a child who did what I asked the first time without requiring a valid reason and offering a 5 point argument in return, I can’t imagine saying a number and not hearing a small voice interject ‘excuse me Mummy, Thomas/James/Percy is the number 1/5/3 engine.’ I can’t imagine watching my child walk down the street without stopping to pretend to load himself up with coal. I may watch those parents of other children with a mixture of fear and awe, but I have no desire to change my child, or those parts of my partner or myself that are reflected in him.

Don’t get me wrong, some days flat out suck. I have a 5 and 3yr old. Some days SUCK.

But the hard part has been other people.

I get that this is true for all parents, but if you have a kid who is any way out of the ordinary, or even a perfectly ordinary kid and you happen to be around people who have forgotten/don’t even know what an ordinary kid behaves like; then you will get handed advice (I say advice, I mean shit) from other people. These people may mean well, but they’re jerks. (If you’ve ever told someone your kid is Autistic/ADHD/any other genetic condition and gotten an “Oh I’m so sorry!’ response then you’ll get what I mean when I say nice people can still be jerks.)

There are lots of things I’m bad at – running in a straight line without falling over, singing (I am unbelievably bad at singing), not finishing the bowl of chips despite being ridiculously full and knowing that I am obviously going to regret it. But, I’m not a bad parent.

There are people who have a list in their head of what it means to be autistic, and what it means to parent an autistic child. This list is often negative. I know it is, I’ve heard it many times – Violent. Aggressive. Lacking empathy. Needs discipline. Can’t let them get away with anything. Only way they’ll learn.

These people can often be found at public parks and in shopping centres, but sometimes they’re close to us too. They’re our friends and our family, and they whisper to our fear that we are bad parents. Bad parents parenting bad kids, and doing it badly.

And when we hear that list, what do we do?

Sometimes we walk away. We grab our beloved children and we hightail it the hell out of there. We rant. We scream. We tell the jerk that they’re jerks and give them the finger. We hold our children close and whisper ‘You are loved.’ But how do you shake off the condemnation of others in something that is so close to your heart, especially if your kid totally did push the toddler down the slide?

I have my own list, a list detailing the courage of my 5yr old Son – the way he takes a deep breath, bottom lip thrust out and eyes wide as he walks, haltingly, knowing it’s going to hurt, but not quite knowing how much it will hurt and in what particular way – as he moves his lanky awkward body with his lanky awkward brain into a New Space. This is goddamn bravery. A list detailing his many acts of empathy, love, selflessness and compassion to those who don’t or choose not to see it – the Boy who strokes my face and tells me he wants me to cuddle him tonight ‘and your Batman Thomas Mini will be there too!’ This Boy who loves so fiercely, and quickly and whose heart can be broken so easily.

But.

When I’ve pointed out this list to others, what I’ve found is that my list isn’t wanted. Or it’s ignored with a sweep of a hand, an ‘of course he does good things, but he does bad things too right? Bad things?’

Or worse still, when I give the list and instead of feeling empowered I feel dirty. Because, I shouldn’t have to carry around my own list, my list that starts with ‘But, he also does this…’ whether I actually say those words or not. The ‘But’ weighs heavily. It panders to the idea that his existence requires a balance, that as long as my list is bigger than theirs that he is valuable. I should not have to defend my child’s existence by weighing up lists. No-one should. And then there’s the Boy.

He listens.

He hears.

He understands.

Is he balancing his worth based on lists? Does he hear the ‘but ‘ clanging into place during the times I have officially Lost My Shit and told the jerks off. Does he feel like only bits of him are worthwhile? Loveable?

Maybe it’s not other people that are the hardest part. Maybe it’s the attention I pay them, the parts of them I let into my parenting and into my relationship with my child. Maybe the hardest part has been, and always will be, myself. I don’t fully know how to navigate this, to teach my kid that all of him is loveable when he’s functioning in a world that often taints him and others like him negatively. But I can control the world I build for him with me, and that world will quietly have a conversation about how it’s not ok to push other people, even when they’d been at the top of the slide for ages and that ‘I’m strong enough to push them!’ doesn’t mean you necessarily should. The world we build will be gentle, and it will explain (repeatedly, probably, and with visuals) and slowly, we will add more people to our world; people who love us and people who understand. People who know what to do when I so often don’t. These are the people I will listen to, the people who will speak to my heart; and the people who, I hope, will eventually become the world for everyone else too.

The Various Ways I have Messed Up Today and What are we Learning Really?

Holidays can be hard. I always forget this. Instead, I look forward to them, to officially Spending Time Together. Why, why would I do this? What do I think will be glittery and playful about 4 people with varying needs thrown together into a world filled with:

  1. No Routine (People ask: What time do the kids usually wake up? We have no idea. None. Some days it’s 5am some days it’s 9am – this is holidays, perpetual confusion and no knowledge of what is happening or when it may be happening).
  2. Loads of Toys (So. Many. Toys. Christmas Toys, Birthday Toys, Oh My God I Can’t Take It Anymore So Yes I Will pay $10 For This Crappy Toy So I Can Perhaps Have 10 Minutes Of Peaceful Grocery Shopping Toys: Do these toys equal happiness? No. No they don’t. We know this. We KNOW this. But we still do it. Clearly, we are lacking some serious causation skills. Don’t get me started on batteries.)
  3. Lack of Food (There is never breakfast food at breakfast time, there is never dinner food at dinner-time, and lunch is just this vague time throughout the day where we sob and eat crackers).
  4. Negotiating (Due to lack of routine/food we require negotiation to get food and go places. This is difficult enough between 2 adults who have probably eaten ½ bag of crisps and a nectarine for breakfast but when you add in a almost 5yr old who can sideline a conversation about perhaps putting on shoes to go shopping into a discussion about the mating habits of hermit crabs it can be time to sob and eat crackers before you’ve even brushed your teeth.)

There is too much noise for me. Too many voices, too many options and too much begging other people for 5 minutes to finish a cup of tea. I have that constant itchy awareness of dishes in the sink, clothes in the laundry basket, on the line, folding to be put away and the high possibility that there is wee on the carpet in the toilet. Tempers are frayed, instead of asking questions I make demands. Which, inevitably leads to the Boy yelling ‘I get to choose! I am putting my room in LOCKDOWN’ (a phrase which he got from I don’t even know where) and the Girl quietly but definitively saying ‘No Mummy’ and plopping down on the floor with the air of someone who is Not Moving Ever.

We attempt to placate the children with TV so we can work out what we’re doing, what we need to do and what is humanly possible to achieve. We say maybe 3 words to each other before Boy and Girl run into the bedroom and jump on the bed. The plan when we decided to have children in our lives was to respond to their needs with love and care and general respect – I do not follow the plan at this point in time. I yell, loudly.

This helps exactly no-one.

Having been told that your child is Autistic and that this involves ‘Deficits in Social Communication’ (Differences in Social Communication) there is an impulse to find the Learning in a lot of moments that may not necessarily have anything to do with learning and perhaps have more to do with me and my insecurities than him. This is especially true when I’m struggling myself. Instead of meeting the Boy where he is, I suddenly and inexplicably expect him to meet me where I am. At this point, I was consumed with ‘Why won’t my children Listen to me?’ with a side of ‘What about my needs?’ It’s easy to be sucked in by that fear that your kids won’t learn unless they’re explicitly taught every single thing. That fear that tells you that A Bad Day = A Bad Kid.

The Boy gets up, quietly goes into the back yard, comes back and stands in front of me with hands clasped behind his back and whispers ‘Mummy, I have a surprise for you. It’s not a butterfly. It’s a flower. You have to guess flower.’

I guess flower.

He presents me with a beautiful red hibiscus flower. ‘Now you’re happy!’

And once again, I politely tell that fear to Fuck Off. My child is learning. My family is learning. But most importantly of all, I am learning. I am learning where my own limits are, I am learning how lucky I am to be parenting these children, and that even if my Boy didn’t give me a flower today, that we would all still be ok. And that if I put my family in an uncomfortable situation (eg, holidays) then I don’t get to be all shocked when we react in uncomfortable ways.

I tickle bellies, I agree that today is a Not A Clothes day and we read books on the floor while munching on apples. I apologise for yelling and we all move on peacefully.

More or less.

L and I agree that today is a Shit Day and make amusing drinking signs at each other while pretending to play Garbage Trucks with Boy. After being wee’d on for the third time by toilet-learning Girl I hide in the pantry and scoff chocolate. This does not make the wee disappear. But it does make the chocolate disappear.

We wait for bedtime, we feed Boy and Girl in the bath. Baked beans. From the tin. They don’t even get separate spoons. We are ok with this. They are happy! They are playing penguin games and giggling. Happy! Finally, they are in bed, Boy is still wearing the same pyjamas he’s worn all day because they’re ‘cuddly pants.’ Again, we are ok with this. Happy! I kiss his baby cheek, stroke his face and tell him how much he is loved. How tomorrow will be a better day and that he is My Favourite Boy. He pulls his blanket around him and says ‘Yes, but tomorrow Mummy, if you yell at me, I will say ‘No Mummy! This is not a yelling house!’ and you will stop, DEAL?’ And I am so aware that this is a Learning Moment for me, not for him, and the best thing I can do here is make my beloved Boy feel less shit about a fairly shit day. So I say the only thing I could reasonably say – ‘Deal, ratbag, deal.’

And I go turn those amusing drinking signs into reality.