Happy Father’s Day

Happy Father’s Day to all dads, whether old or young, with big children or small, neurotypical or otherwise. Remember, anyone can be a father, but it takes work, dedication and understanding to be a dad.

I spent my first Father’s Day in NICU, the Neonatal Intensive Care Unit, my little girl in a plastic crate with a tube in her nose. I came in first thing in the morning, bleary-eyed and overwhelmed, to find a mug beside her bed that said, ‘World’s Best Daddy’, and a card from my daughter that contained her footprint in pink paint. To the paediatric nurses and prem baby charity Bliss, I have to say that it made all the difference to me that day. Thank you for your sensitivity and your kindness. Little things make all the difference.

I have written an open letter about this experience to my daughter for Autism Wessex. Feel free to have a read.

All the best, and keep up the good work!

Gillan

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Managing the Toddler Stage

When people see you struggling with a heavy load, they don’t ask if you’re doing an awesome job or exceeding all your expectations, or if carrying heavy loads comes naturally to you – they say, ‘Can you manage?’

I think there’s a lesson there for all of us.

As a dad, and an autistic dad at that, I want to be the best parent on the planet – guide, teacher, confidante, protector, therapist, playmate, master and friend. I want to be friendly, understanding, patient, relaxed, calm, tolerant, respected and in control. I’m pretty sure that’s normal – no parent thinks to themselves, ‘Damn I wish I was worse at this than I am.’ But where I possibly differ from many is my rigid, black and white, all-or-nothing approach to the subject.

You see, to my way of thinking, if I’m not the best dad in the world, then I must be the worst; if I’m not excelling, then I’m failing; if I’m not winning then I’m most definitely losing. My benchmarks, my expectations and my standards are set so high you need oxygen and ice axes to reach them. This is unrealistic, and I know that, but it doesn’t stop me striving for greatness.

Up to now, this hasn’t been much of a problem. There have been trials and hardships, sure, but every step of the way I’ve overcome them. A bit of perseverance here, some tender loving care there – all it required was patience, endurance and a sense of humour. Simple.

Not so now that she’s hitting two. This terrible toddler stage is something else entirely.

Everything that took minutes before now takes hours. Everything that once was easy is now like quantum mechanics. And everything she used to do willingly has become a clash of nuclear powers that leaves only devastation in its wake.

Bedtime, for example. I used to put her down, read her a story, and that would be that – maybe I’d have to stick her back under the covers a couple of times overnight, but nothing more than that.

Now it’s like carrying a hissing, spitting baby tiger up the stairs, trying to avoid getting your eyes scratched out while enduring a barrage of feral, bestial roars that befuddle your senses and threaten to burst your eardrums. You put her down in bed, and she kicks off the covers and is at the bedroom door before you can escape. So you fight to lie her back down, and you reason, threaten, beg, cajole and finally bribe her with a story until she’s finally quiet and allows you to leave.

Three seconds after you close it, the door flies open and she hangs over the stairgate screaming blue bloody murder at you, as though the sky is falling down and you’re the one to blame. You hide in your bedroom, wait a minute and then pick her up, against her struggles, put her in bed, against her screams, throw the covers over her and race to the door.

And then the whole thing repeats.

It’s like being trapped in Tartarus with a cruel and unusual punishment picked out exclusively for you. Two minutes, three minutes, four minutes, putting her back in bed each time only to have her wrench open the door behind you and claw maniacally at the bars. Five minutes, six, seven. The screams descend into choking splutters, snorts, grunts, growls, a demon in your midst.

Until that wonderful, horrible moment, hours later, that she’s all cried out and sits on the floor like a dejected prisoner, rattling her dummy against the bars of the stairgate locking her in her room. And you sink to the floor yourself and you slither across the carpet to the stairs, lowering yourself inch by inch, praying they don’t creak because at the slightest sound she’ll start up again.

And you slink away and fall on the sofa, and you feel like bursting into tears because you’re battered and bruised, it’s all so hard and you can’t take it anymore.

And then she starts screaming again.

Unbelievably, the days can be worse. For the past three days, my home has been a war zone. The house is a mess, the floor covered with toys, and I decided that enough is enough. I told her she couldn’t get out any more toys, or watch Peppa Pig, until she had put her wooden blocks away. Two-and-a-half hours later, having screamed, cried, shouted, attacked me, laughed, giggled, batted her eyelids, hugged me, pleaded with me, thrown herself into the walls, thrown the blocks, hit me with her doll and overturned half of the furniture, she put the blocks away.

Did I feel jubilant, triumphant, victorious? Hell no. I felt emotionally raw from the hours of abuse, fighting to stay calm as she pressed every button and tested every boundary. I am the mountain worn away by the sea. But I consoled myself that the next time, it would be easier.

Yesterday, I told her to put away her wooden blocks before we went to the park. Three hours later, on the verge of screaming and crying myself, she put her blocks away. I won. At the cost of my soul and my sanity.

Today, to be fair, it only took one hour. But who knows how long it’ll take tomorrow?

I’ve never really understood the idea of picking your battles – I’ve always been of the opinion that if a principle is at stake then you attack it wherever you find it – but I’m discovering that flexibility in parenting a toddler is a must. After hours of fighting over the wooden blocks, when she started taking the DVDs out of their cases and putting them back in the wrong ones, you know what I did?

I pretended I didn’t see.

I’ve drawn a line in the sand, nailed my colours to the mast – the wooden blocks are the issue on which I hang my hat. If I can master this one thing, then I’ll deal with everything else, but I can’t do it all at once and I don’t have the energy or the emotional resilience right now to be master of all things.

Because the truth is, while I might want to be good at every aspect of parenting, to excel and overcome and be the best damned parent in the world, I’ve realised that in order to survive raising a toddler you have to lower your standards, relax your ideals and temper your expectations, or you’ll go crazy.

And that’s okay. Like the man with the heavy load, nobody is asking if I’m excelling – they’re asking if I can manage. And yes, I can.

That’s the lesson I take from this week – I might might want to conquer Everest, but setting my sights on Kilimanjaro as a more realistic alternative doesn’t make me a failure as a parent, does it?

Does it?

 

My Endearitating Toddler

My daughter has just reached a milestone of cognitive development – she has named a toy!

I’d like to say this is a proud moment, especially considering I never named any of my toys growing up, but in all honesty I’m not really loving what she’s called it.

‘Oh, what a lovely doll,’ people say, smiling at her. ‘Does she have a name?’

My daughter beams right back at them and replies, in her angelic voice, as though butter wouldn’t melt, ‘Chewbutts.’

‘Oh,’ they tend to reply. ‘Chewbutts?’

‘No,’ replies my daughter, and holds up her index finger like a teacher correcting a pupil’s pronunciation. ‘Chew. Butts.’

‘Well that’s an interesting name,’ they generally say. And then they give you that look, the one that is somehow sympathetic and supportive while simultaneously questioning your parenting ability and your fitness to reproduce.

This seems to be our lot in life at the moment. My daughter mastered her first complete sentence the other day, copying something from one of her toys: ‘I love cookies.’ But she doesn’t say cookies. She thinks she’s saying cookies, but she’s not.

She’s saying, ‘I love titties.’

She loves dropping it into conversation whenever and wherever she can. Particularly when you’re around judgemental strangers at the supermarket.

‘I love titties.’

‘Cookies.’

‘Titties.’

‘Cookies!’

I’ve created a word to describe this phenomenon – well, I’ve slammed together two pre-existing words, so it’s not that impressive:

Endearitating, adj. – those utterly adorable behaviours you cherish and seek to encourage that simultaneously drive you up the freaking wall.

Words are a real problem at the moment. I’m daddy, which is pretty obvious and straightforward. Nana is dada, which is a little more confusing. And dad means a multitude of things. So a typical conversation goes like this:

‘Daddy.’

‘Yes Izzie?’

‘Dad.’

‘Yes?’

‘Dad.’

‘What is it?’

‘Daddy?’

‘What!?’

‘Dad!’

‘What!? For the love of God, what do you want!?’

‘Dad! Dad!’

And then I realise she’s seen a cat out of the window – a dad. And she’s saying, daddy, look at dat, it’s a cat.

Those are the easy conversations – the ones with an object where she’ll shut up once you’ve acknowledged it. Harder still are the times she really is saying daddy and has no idea what she wants – but she’s damned sure she’s going to make you suffer until she gets it.

‘Daddy?’

‘Yes, darling?’

‘Daddy?’

‘Yes?’

‘Daddy?’

‘What do you want?’

‘Daddy?’

‘Yes?’

‘Daddy?’

‘I’m not going to keep doing this.’

‘Daddy? Daddy? Daddy! Dadd-deeee! DADD-DEEEE!’

‘What!?’

‘…daddy?’

She’s also reached that point where she cares deeply about other people, something that’s beautiful, and commendable, and gosh-darned annoying.

‘Where’s dada?’

‘Nana’s in France.’

‘Oh. And poppa?’

‘He’s with nana.’

‘And gry-ee?’

‘Granny’s also in France.’

‘George?’

‘He’s in France with granny.’

‘Oh. Dada?’

‘I just told you – she’s in France.’

‘And poppa?’

‘In France, with nana.’

‘Gry-ee?’

‘Like I said, granny’s in France, with George, before you ask.’

‘Oh. And dada?’

‘France! With poppa.’

‘And Gry-ee?’

‘She’s in France! With George, in France!’

‘Oh. And dada?’

This conversation occurs at least ten times a day. If we fail to answer, it’s a case of ‘Dada? Dada? Daddy, where’s dada? Dada? Daddy? Dada! Where’s dada? Where’s dada!’

And between these conversations, she picks up the TV controller, a wooden block, your watch, and talks into it as a phone. ‘Dada? Poppa?’ Then she hands it to you and says, ‘Dada, daddy. Daddy, dada.’ And you find yourself talking to your mum through your own shoe.

My sanity is hanging by a thread.

Rather adorably, she’s very concerned about our welfare, too. Rather annoyingly, she won’t let up. If you finish your breakfast before her, which is every day, she says:

‘Daddy, more.’

‘No, I’m fine thanks, I’ve finished.’

‘Daddy, more.’

‘No, I’ve finished.’

‘More, daddy.’

‘No more, I’ve finished.’

‘Daddy, more.’

‘Can you please just leave me alone?’

‘Yes. More daddy, daddy more. Daddy? More?’

There is also an obsession with making sure our toiletry habits are healthy and regular.

‘Daddy wee wee?’

‘No, daddy doesn’t need to wee wee.’

‘Daddy poo poo?’

‘Nope, I’m good, ta.’

‘Wee wee poo poo, daddy.’

‘No, I don’t need to.’

‘Daddy wee wee.’

‘No.’

‘Daddy poo poo.’

‘Go bother your mother.’

This same concern occurs if you happen to close your eyes for five seconds.

‘Daddy, tay?’

‘I’m okay, sweetie.’

‘Daddy, tay?’

‘Yes, I’m okay.’

And if, God-forbid, you lie back on the sofa and put your feet up, you’re met with, ‘Daddy, tay?’

‘Yes, I’m okay.’

‘Tup, daddy.’

‘Just give me thirty seconds to myself.’

‘Daddy, tup. Tup, daddy.’

And then she’ll climb onto my chest and start pulling at my eyelids to make sure I’m okay and I’m going to get up.

She’s also reached that important stage where she discovers the concept of ownership and has to decide what belongs to whom.

‘Daddy car.’

‘Yes, that’s my car.’

‘Mummy car.’

‘Yes, that’s mummy’s car.’

‘Daddy car.’

‘Uh-huh, that’s my car.’

‘Mummy car.’

‘Are we really doing this again?’

But at least that’s preferable to her notion that almost everything else belongs to her. Mine, mine, mine is a constant refrain in our house.

And she doesn’t turn two until next week. I’m not sure how much more of this I can take.

But you can’t get mad at her, even though you want to. She’s not doing it on purpose. At least, I hope she isn’t.

She truly is the most endearitating person I’ve ever met.

My Life With Autism

For anybody in the Dorset/Hampshire borders region (or further afield, I’m not fussy!), I’d like to announce that I’m talking at an event on Tuesday evening, June 6, entitled ‘My Life With Autism’.

It’s hosted by Autism Wessex at Portfield School from 7:00-9:00pm and it’s free, but as spaces are limited you need to book tickets from the following link: Get Involved.

I will be talking about my journey to diagnosis, the difficulties of growing up undiagnosed, work, parenting, and day-to-day life. Along the way I’ll provide hints and tips on living with the condition that have proved helpful in my own life. There will also be the opportunity to ask questions.

I hope to see some of you there and thanks for reading!