No Tragedies Here

I don’t know how to write about my children here anymore.

I don’t know how to write about being their mum.

And it shouldn’t be this way, because of course I could wax lyrical about their sweet natures, the funny dances in the living room, the look on Tristan’s face when we took him to CBeebies Land, the way Leo presses his face against ours and closes his eyes to say “I love you” in a language that’s only his. I could write, talk and sing about my children.

What I mean is that I don’t know how to write about autism.

And that’s not my fault. It’s because I love my children that I don’t write about autism. It’s because I love three autistic people more than anyone else I’ve ever known that I don’t write about autism.

The internet is brimming with blogs written by parents of autistic children sharing details of the tragedy of their lives, the hardships, the ‘victories’, the regrets, the vaccines (or not), the meltdowns, the poo smearing, the anger, the pain, the BEWARENESS. That isn’t me. Those people make me angry and sad, and angry some more.

Because autism isn’t a tragedy.

My husband is autistic. He is the most beautiful, kind soul. He is fiercely intelligent and lacking in all common sense. He can be selfish and stubborn and silly, and looks amazing without a shirt on.

My eldest son is autistic. He is a star, as close to an actual embodiment of a twinkling celestial ball as is possible. I don’t know what universe he’s from but it must be a magical, enchanting place. He’s funny and creative and so innocently charming that it makes my heart flutter. He can be feisty and bossy too, but so, so sweet. He sees the world through his own kaleidoscope and it is simply beautiful.

My youngest son is probably autistic too. He hasn’t been diagnosed yet as he’s still so young and the process is more complicated, but we believe he is, as does his speech therapist, and we’re waiting to hear on his referral. He is my baby, my two-year-old-but-more-like-a-one-year-old. His favourite place to be is in my lap, whether he’s happy or hurt. He doesn’t speak at all, but his eyes sparkle with mischief and his smiles take over his whole body. He hiccups when he laughs too much. He feels with every inch of his body.

There are no tragedies here.

What I wish is that I could be an antidote to the vast wealth of negativity out there. A parent writing as an ally to my autistic family and the community as a whole, not as a victim.

Because I’m not a fucking victim. My children aren’t victims. My husband is not a victim.

(…Well they might be victims of an ignorant society, but certainly not of their neurotype.)

I hope to be that blogger, that ally. I want to throw my hat into the ring and use my privilege as an allistic adult to advocate for my children and fight for autistic rights and the recognition of neurodiversity. I care more about this than almost anything else in my life.

But right now there are other things waging war in my head. Some tangible, real life monsters – most not. I am tired, worn, drained. And everything I feel I want and need to say for the benefit of my family and to show my pride in them for being exactly everything they are gets lost on the journey between my brain and my fingers, and I no longer outwardly have the fluency to say everything the way it deserves to be said.

You might suppose I could write about my family without mentioning autism, but you’d be wrong because to understand autism as a concept you must first understand that it isn’t something that’s separate from my children. They don’t have autism. They don’t suffer from autism. They don’t live with autism. They are autistic. It is who they are. To write about our latest trip away or the loss of our dear pet or why Thom created a YouTube playlist for Tristan of themed hotel rooms would mean writing about them, and they are autistic. I can no more remove autism from my family than I can change the colour of their eyes. And I would never want to.

I want to write about my family more freely and confidently, knowing I won’t hurt them or their community with my tired words. I want to stand up and say, “I’m not a victim.”

I’m not a “warrior parent.”

I’m not an “autism mom.”

I’m Lindy, and I’m the luckiest wife and mummy in all the universe (and wherever Tristan’s from).

I just need a little time to do this right.

The Hardest Thing

I was lost for a while.

I didn’t realise it at first, through every nappy change, every bowl of pasta tipped on the floor, every reading of Tabby McTat. Every chunk of hair yanked out by chubby fingers. And the scarier stuff, like all the early mornings soothing my tired and anxious husband as he wrestled with fears bigger than himself, all the late nights talking about our relationship, picking us up and hoping he didn’t drop us again. Toddler tantrums, baby grumbles, mummy meltdowns. Daddy on the other side of the universe (or so it felt).

Pick up, dust off, get on.

I got lost under the waves that were rocking my family. I tried to hold us together, and I’m proud to say that I did. But it came at a cost. And that cost was me.

Not even my self worth, or my free time; just me, the grasp I had on who I was without the other people around me. Like looking in the mirror and seeing their faces but never mine.

I don’t regret a thing. I carried us all and we made it through.

But I stopped being a person in my own right. I was only mother, wife, counsellor, mediator, therapist, personal shopper, accountant, chef, life coach, cleaner, nurse, teacher. It’s sometimes hard when you’re buried underneath so much responsibility to even notice that you’re struggling to breathe.

So I started to break a little. Bit by bit the burdens grew heavier and I was less able to hold them. My self esteem plummeted with every new ‘failure’. I apologised when I was ill, when dinner was late, when I slept in. Guilt was my shadow. I criticised myself for wanting time alone or checking my phone when I should’ve been playing with my kids. I tortured myself for causing my son’s speech delay. I went from solving our problems to blaming myself for them.

I realised it had gone too far when I spent the days before Christmas focusing on everything I’d done “wrong” and apologising to my family for not being good enough for them. I was too busy hating myself for not being the wife and mother I should be to actually enjoy my beautiful boys. Christmas, a time I look forward to all year and always fills me with magic and warmth, was lost to me. I was lost to me.

So I began the new year with a resolve to find myself again. So far that looks like apologising less, keeping a happiness journal, watching movies alone, listening to music that made me feel alive when I was a moody teenager in bad eyeliner and baggy jeans, crocheting more, sometimes saying no and often saying yes. And it’s working, albeit slowly. I can feel the change in how much enjoyment I’m taking from my sons and how much clarity I feel with my husband. I’m getting there.

When I was pregnant with Tristan someone warned me that the hardest thing I’d have to do as a parent is put myself last, but they were wrong; far harder is having the strength to stand tall and put myself first.

When You Speak

My darling boy,

In a few weeks it will be three years since I first saw your scrunched up face and your serious eyes. Three years since you grasped my heart in your tight little fist and changed it forever. We’ve been through so much together already, it’s hard to believe you’re only three years old. How have you not been here always?

You amaze me daily. You are so kind and quirky, imaginative and playful. When I’m sad you always come to me and gently stroke my arm until I look up and smile. You are cuddly and sweet. You love pesto and play-doh – you’ve been known to eat and play with both. Your favourite film is Monsters University, your favourite book is your pop-up version of The Very Hungry Caterpillar, and your favourite place is the woods, or maybe the pond with all the ducks and pigeons. You still wake most nights but your face lights up when you see us next to you in the morning and it makes the disrupted nights completely worth it. You are headstrong, stubborn and frustrating; you do things your own way, but you rarely tantrum. I’ve seen you hurt and angry but able to pick yourself up and move on happily. You eat grapes by the tonne. Your best friend is the cat and thankfully it’s more than mutual. You are adaptable, excited about everything, gentle and rambunctious in equal measure. You are every season rolled into one.

But I don’t know what your favourite colour is, whether it’s constant or changes every day. I don’t know what you dream about. I don’t know whether you know you’re starting nursery next month, even though I’ve tried to talk to you about it. I don’t know what adventures your toys are on when they’re jumping round on the table and diving off the sofa. I don’t know where you want to go on your birthday. I sometimes don’t know what you want when you whine and look up at me pleadingly.

You have a speech delay and there is so much I don’t know.

I don’t know why you don’t really talk. I don’t know if it’s something we have or haven’t done (you’ve certainly had less one-on-one time with us since Leo arrived). I don’t know if you have a developmental disorder, or a hearing problem. I don’t know if you’re just taking your time and you’ll suddenly start speaking in full, grammatically correct sentences and reading the Financial Times over breakfast.

But the whys don’t really matter. I don’t want you to be anyone other than who you are, and who you are right now doesn’t talk. I want you to know that’s okay.

I just wish I knew whether the decisions I’m making are the right ones for you. I wish you could communicate to me somehow that, yes Mummy, keep going, this is what I need.

Because I’m clueless.

And yes, I wish I could hear you tell me you love me. Heck, I’d settle for you saying my name more often. And I admit I’m jealous of all those parents of children the same age as you sharing their stories of the latest funny thing their little one said.

But please understand I’m not jealous because I’m disappointed in you, or in any way ashamed. You are perfect to me. I would never ever change you, not for anything in the world.

I’m jealous because of all those I don’t knows. I want to hear your thoughts because I want to know you better and drink in all of you before time changes you, as it’s meant to do.

Like how sometimes you hug Toru and squeeze too hard because you want to love as much of him as you can, but then he swishes his tail and jumps up so you can’t reach him anymore? You feel sad that he moves away but you’re not angry with him, you just want to keep loving him, don’t you? Mummy feels a bit like that when you don’t talk.

But it’s really okay. You can keep swishing your tail as much as you want, my sweet boy. Keep on being you, keep on conquering the world, keep on laughing at random dogs in the park, keep on dancing to the music you sing to yourself, keep on shining with that beautiful smile of yours. You are doing just fine.

And I promise you that when you speak, I will listen.

tristanmyheart

It Never Stops

The spilled drinks.
Cheese puffs scattered on the floor like toddler confetti.
The bumped heads, stubbed toes and unidentifiable rashes.
The calls to NHS Direct and the inevitable, “You’d best go to A&E just to be sure…”
Then  – “Did they think I was wasting their time?”
The nappy changes, clothes changes, channel changes.
The sticky fingers, sweaty hair, and toenails that desperately need trimming before he learns to catch small rodents with his feet.
(What will people think?)

It’s constant.

The crying, the whining, the wailing as though some great injustice is being dealt even though I’m doing exactly what I thought he wanted.
The repetition, the tedium, the repetition.
The wooden cars driven up my legs, the tiny giraffe in my hair, the hands everywhere.
On me ALL THE TIME.
Bathe, rinse, repeat.
(Except don’t rinse because he hates water in his face.
And never repeat.
Unless you’re a toddler, in which case repeat everything forever.)

The mess. Everywhere. Walls, floors, faces.
The incomparable pain of standing on a lego brick.

(No, wait – standing on a metal biplane is worse.)

Coffee, cake, chocolate.
Must eat better. Could join the gym.

Maybe next month.
I need the comfort and calories after another aborted day out.
I’m sure he liked farm animals last week?

The noise! Shouting, screaming, banging, burping, scraping, throwing.
All when the other is trying to sleep.
Do they do it deliberately?
Why are they doing this to me?

The snapping, the yelling.

The apologising.

This isn’t the mother I want to be.
I’m not equal to this.

The fear.
The guilt.
The worry.

It never ends.

I can’t do this.

Each day the same.
Alarm. Breakfast.
Coffee, cake, chocolate.
The same TV shows (we sing the theme tunes together).
The jigsaws, the play-doh, the painting.
The reading, pretending, bouncing.
Splashing!

Did I mention the singing?

The kisses, the stickers, the Gruffalos and Zogs.
The towers, the tickles, the dancing!
The beaming grins that make hearts skip and wrinkles deepen.
All of us together, the only people in the world.
Feelings so big there isn’t enough space in the universe to hold them.

The glances to the only other person who understands what these moments mean.
And the quiet smiles that say, “I know, I feel the same.”

The mess, the noise, the laughter!
The sticky hands everywhere, on me – don’t care!
We’re tigers today, growling and chasing.
My cubs are loud and I am too.

They’re growing so fast.
I’m running to keep up.

Stamping through leaves, feeding ducks, counting raindrops.
Holding hands. Hugging.
Loving, learning.
Exploring.

Changing.

It never stops.

Family of Four

So I’m back after my unplanned and largely baby-led hiatus. My firstborn consumed my sleep which I’d thought was bad enough, but now his brother has dramatically swooped in and eaten time itself. Not that it isn’t wonderful and fulfilling – it really is – but I do spend my evenings staring into space, scraping bodily fluids out of my hair and gazing upon the day with the awe, pride and incredulity of someone who’s woken up next to an empty wine bottle, an alpaca and a return ticket to Peru.

Our smallest family member is now the grand age of 5 months, from my experience a time in a baby’s life when wakefulness and screaming for increasingly elusive reasons become firm priorities. Also hair pulling. Between Leo and my postpartum loss there’s enough hair embedded in the carpet to weave actual-size replicas of the cats, which will be handy when they inevitably pack their bags and move out because they’re done reaping the consequences of our decision to procreate. (“We stuck it out after the first but then they did it again and I’m too old to be run over with a Cozy Coupe.”)

So to compensate for my absence here I thought I’d take the chance to share a snapshot of our new(ish) life as a family of four via the things I’ve learned over the last 171 days –

1. It turns out my children being within a metre of each other is the BEST THING. Not for them, you understand; Tristan has virtually no interest in his brother, and I get it – objectively Leo is not exciting. He doesn’t have wheels, he can’t play and he wasn’t created by Pixar. Bor-ing. But for me seeing them together makes me positively giddy with joy. The two creatures I love more than anything in the world INTERACTING. My heart explodes every time. It reminds me of the feeling I had when my best friend and boyfriend (now husband) became friends and I’d watch them chatting in the pub and beam across at them like an over-earnest kids’ TV presenter, except with my sons that feeling is even bigger and the smile even more creepy because I love them more than life itself. My attempts to create these moments have led to photos like this –

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And this –

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2. All babies are different, I knew that. But I naively thought fate would be generously selective about those differences when it came to my own children. NOT SO. First time round we had a sleep thief, who at 32 months still hasn’t learned the mythical skill of ‘self-settling’, is rocked to sleep, has milk during the night and doesn’t sleep alone. Fine, I thought, the next one will be easier. We’ve earned it, I thought, and the first time I placed Leo gently on the bathroom floor so I could pee and he instantly drifted off I believed I was right, and that perhaps there was a god who’d seen how tired I was and figured I deserved a break. WRONG. At five months old Leo has never napped lying down (apart from that one time on the bathmat). Never. He only sleeps on Big T’s shoulder or with a boob in his mouth. Suddenly my pram loving, sling loving, dummy loving toddlebeast seems like something off a Mothercare poster. Leo will not go in a pram for more than ten minutes at a time. He quite likes being in a sling, but not for too long and he WILL NOT SLEEP IN ONE, which seems like a matter of principle to him, especially when his eyes are half closed and he’s chain-yawning. And as for a dummy, not a chance. Why settle for silicone when the real thing is available? Suddenly my well stocked parenting arsenal is looking a little sparse. I have boobs and that’s basically it, and those boobs aren’t even his primary food source. I feel like a total novice. I thought I had this! I should be a pro by now!

3. Gender disappointment is real, but in my experience doesn’t last very long.
A year ago, early on in my pregnancy, if someone had told me I could choose what sex my secondborn would be I would have said, “GIRL,” without any hesitation, due in the main to a natural preference for variety. I’m usually a ‘little bit of everything’ kind of gal so it stands to reason that at the buffet where all the chromosomes hang out I’d go for the XX since I already had some XY on my plate (babies-as-hors d’oeuvres metaphor ftw!). Another, much smaller reason is that clothes designed for children with vaginas tend to have more rainbows on them, but that really is a minor issue since Tristan definitely doesn’t have a vagina and still wears clothes not ‘made’ for him because, y’know, his genitalia doesn’t predispose him to liking tractors, football or the colour blue. But I digress…
So we had a preference, albeit not a particularly strong one. And yes, when I saw Leo being born and he was presented to me balls first (seriously) there was a shock of disappointment that lasted all of one second, a sort of lightning strike to illuminate a path I’d never follow. I was the mother of boys. We had boys. And with no other children planned I’d never be a mother to a girl. And what surprised me was how completely okay that felt. Better than okay, it felt good, like it was exactly how things were meant to be. I held my newborn son in my arms in my hospital bed and a new piece of my heart bloomed that I hadn’t known existed before. Where his brother had brought me alive, Leo had made me complete.
And it’s nothing to do with which box is checked on his birth certificate.

4. There is nothing worse than seeing your child sick in hospital. Nothing. Nothing can prepare you for the powerlessness, the frustration, the guilt. But you get through it. You manage, somehow. You don’t sleep, you barely have a chance to eat – but you cope. And you come out the other side more fiercely protective of your tiny human than you thought possible, and with a quiet but steely belief in yourself as a parent.

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5. I found out who my true friends are, and they aren’t all the people I’d have guessed when I started my parenting journey more than three years ago. Some have been in my life for many years, others are new, but they are all very dear to me. They are the people who came round with supplies when we had a new baby and didn’t care that we weren’t dressed and our house was upside down. They held Leo so I could take 10 minutes to finish a cup of coffee. They brought gifts for me rather than him, at a time when I felt all I was was a baby feeding machine, and a failed one at that. They offered to donate breastmilk for my son when I was desperate and spent and had nothing more to give. They sent messages in the middle of the night telling me that I had this. They talked to me the same way they always had, as though I was still just Lindy, not Mummy, not a parent, not a breastfeeder or bottle feeder, babywearer or cloth nappy user. Just me. I don’t see these people every day, or even every week or month – some never – but they are my tribe, my village and they have my gratitude and friendship for life. They are part of why I didn’t suffer with post-natal illness after having Leo. They are why I’m still holding it together. They are fucking awesome. ❤

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6. I understand now why my own mother never had new clothes or shoes, why she mended her old things and why it was a Big Deal when she bought anything new for herself. I had a taste of that when we had just one child, but now we have two I understand more the need to nurture my babies at the expense of myself. Kids are expensive and while we aren’t poor by any means, with only one of us in employment we do have to make sacrifices to give our children the lifestyle we want them to have. If that means I have to sew up a hole in an old dress or Big T has to buy his jeans second hand, that’s more than fine. We’re proud to do it. Seeing Tristan pick out his own shoes for the first time is a gift far greater than having new shoes myself.

7. There are different kinds of love, we all know that. We don’t love our grandparents the same way we love our 6ft hunk of husband, for instance. But I wasn’t prepared for how different my love for my two sons would feel. It’s as individual as their personalities. My relationship with Tristan was more fraught, more tempestuous when he was a baby. Harder. And that shows now in the affinity I feel with him, the sense that we battled something together and came through it even stronger.  With Leo the beauty in my love for him is its simplicity. He is my precious baby, and I am his mother, and there’s a purity about us, a bubble we live in that remains untouched by the outside world, as though he’s still in my belly. Nothing prepared me for the difference. Everyone told me I’d love them equally, and I do, but it absolutely isn’t the same.

8. You can absolutely watch The Land Before Time too often. Trust me. You can try to appreciate the racial subtext, the beautiful artwork and James Horner’s deeply moving score, but ultimately you will want to take Littlefoot and his pals and feed them one by one to Sharptooth just to get the film over and done with sooner. Luckily Tristan isn’t aware of the numerous sequels yet, though at this point I’d be grateful for the variety even if that means singing dinosaurs.

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9. I’ve said before that motherhood for me is a wicked combination of joy and guilt. Since becoming a mother-of-two I’ve had a healthy dose of the former and a less healthy onslaught of the latter. My eldest watches too much television (see #8). He uses his Kindle too much. He goes to bed too late. He doesn’t eat well enough. He never gets enough time with me. He doesn’t socialise enough. My youngest never gets to nap undisturbed. I’m not expressing my breastmilk enough. I put him in the jumperoo too often. I clock-watch. I sleep in on weekends. I scream into a cushion when things feel too much just so I don’t have to scream at my kids. I see photos on Facebook of my childless friends on far away holidays or nights out and I envy their freedom. I sometimes wish I could go back in time and tell myself to calm down with the procreation and live a little. I have ALL THE GUILTS.
But my children don’t need me to feel bad. My guilt doesn’t help them grow or feel loved. All they care about is that Mummy and Daddy love them beyond words and that we keep them safe, which we do. The rest is filler. That doesn’t mean we shouldn’t try to make things better where we can, but instead of letting my guilt cripple me I have to thank it for reminding me I have more to give and then let it go. I don’t want to raise my two beautiful boys in a world of not enough. That shit is toxic and it doesn’t belong here.

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10. Further to #9, and somewhat paradoxically, I’ve learned to try to let go of perfection. I don’t have to be the perfect vision of parenting. When Tristan was a baby I was very hung up on doing everything exactly as the attachment parenting guides told me. I felt guilty if I used the pram, tore my hair out over BLW, wished the earth would swallow me whole when I bottle fed in public. PND and a desire to feel like I’d done something right led to that originally, but Leo’s birth and all the healing it brought gave me the perspective to see how ridiculous it was. Parenting isn’t a sport; I can never be the ‘best’ at it. All I can be is true to myself and try to parent instinctively. When I stop checking boxes I find my values don’t change but my flexibility grows, and I enjoy my children more without the pressure of being the poster girl for all things AP. Looking after two kids doesn’t leave time to worry about how I come across on Facebook, or whether it’s been too long since I carried my kids in a wrap, or whether I can be arsed washing nappies this week. Those things are superficial and I don’t need them to prove to the world what kind of parent I am.

In lots of ways life has carried on as it always has. My boys change and grow all the time, and we grow with them, sometimes not quickly enough to adapt to their needs in the way we want to, but we keep trying. We juggle, we struggle, we love and learn and fill our home with laughter, and the occasional frustrated, cross word.
Our days are as changeable as our current sleeping arrangements, but we’re happy, and while we may not be the perfect parents to our imperfect children, we are all perfect for one another.

(Except for the cats, poor things… But four out of six ain’t bad.)

Little Mountains

You hear it a lot this time of year – “What day is it?” – as though the arrival of Christmas sends shockwaves through everyone’s calendars, a sort of annual festive Millennium Bug that apparently no one learns from. I get it myself of course and it frustrates me because the days of the week are basic Reception age stuff and I generally operate at at least a Year 3 level.

Parenthood does much the same thing to time as Christmas does. Today is my son’s 2nd birthday and AS IF HE IS TWO YEARS OLD WTF YOU HAVE GOT TO BE JOKING SURELY HE’S STILL A FLIPPING ZYGOTE.

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There is no way I birthed this little grub two years ago. Not a chance.

And yet for all the ways the last two years have felt like a tornado blasting through my house and my soul, I also can’t really remember a time when he didn’t exist. Children have that effect, they carve their impressions in the landscape, and like the tallest mountain or the longest river they become a part of your world, a part that’s eternal and timeless and a backdrop for all of history, whether they were truly there or not.

So today for me feels a little like being stood at the base of Mount Everest, having just been told it’s only existed for two years. Whatever the Nepali is for, “Shut the f**k up, you’re drunk,” is basically where I’m at.

Something I regularly marvel at about my baby Everest is his capacity to teach me things. Considering his intelligence more closely resembles that of the average dog than an adult human it constantly surprises me how much wisdom he has to share. For example, did you know that you can use board books as stepping stones across laminate floor? And that spacemen sometimes work part time in toy shops? And that pesto tastes great with fruit custard? Of course none of these things appear to be clever or profound, but on closer inspection what they are are lessons in creativity, flexibility and imagination. He shows me a world without boundaries, a place where anything is possible (and where clichés aren’t clichés at all because there’s no one there jaded enough to call them such). He shows me how it’s okay to be dirty, and it’s okay to leave half or all of a meal, and okay to say no to unwanted affection. He teaches me to laugh with abandon and fart like a child, giddy with the realisation that the best punchline to any joke is a sound gifted to us by biology. He shows me over and over how gender expectations are meaningless by not giving a shit whether his toys are pink, blue or multicoloured or whether the characters in his favourite books and films are male or female, and by excitedly embracing a new train set as well as a new doll that he tenderly and lovingly pretends to breastfeed despite having never seen Mummy do it herself.

He teaches me how to be a real person away from societal rules and the accumulated debris of a life clumsily lived. He’s helped me find a part of myself I didn’t know still existed until he invited me in to his world of play and freedom. He’s taught me the cliché of all clichés – how to be a child again.

And so to you, my darling boy, I wish you the happiest of birthdays. I hope you’ve enjoyed every second. Know there’s no party big enough, trip out long enough, or cake sweet enough to equal the joy you bring to me every day.

There’s nothing we could give you that could match the gift you are to us.

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