To my boy

I found this a few months ago; I had written it at Christmas time last year, not long after Eleanor was born. It’s the most painful thing I’ve ever written, so I don’t want to share it without a little backstory… 

When I wrote this I had not long come out of postnatal depression. It had been 2.5 years. I knew I needed to get things back on track, but after that long I felt so totally overwhelmed that I didn’t know where to start. Sam was a different child when I emerged from my depression. 

When I was depressed I was in a sort of cycle where I was depressed and at the same time parenting Sam was becoming increasingly challenging, and the two things were feeding each other. I was depressed, so I felt to blame for his challenges – and then Sam’s challenges isolated us, which increased the depression… Things felt impossible a lot of the time. 

Writing that moment down somehow pushed things forward. Something happened when I wrote this. I found some more energy. Not immediately, but it happened. I made a really simple change in our life (limiting screentime until after 4pm). The new energy felt like an answer to prayer, the letter was the prayer. Things aren’t perfect now by any means, but they are different, they are improved. Sometimes things still feel like this, but less often than this time last year. 

Social media has this strange ability to whitewash parenting, to make it look somehow easily manageable. So many “how to” articles go around – “change your child’s behaviour with this one easy step!” “Become the parent you always dreamed through these three simple ways of connecting with your baby!” You get the gist. I often feel that I’m the only one who doesn’t manage these things. 

I’ve found I’m the best parent I can be when I accept my limitations (and my child’s) and relax about them, letting go of that perfect parent and child image that is everywhere. I wanted to share my most vulnerable experience in the aims of being a bit more relaxed and honest about being a human, really. 

I have a long way to go still, in understanding myself and understanding my children, in loving myself and loving them. When I read this I remember how worth doing it is. I remember how important my job is. What I am aiming for.

When I read this – written at a time when I felt responsible for so much – I’m amazed to see how the burden has shifted since. How many people have come alongside us. I still feel that burden of responsibility and care, of course, but it feels lighter. Like something I can use to make things more beautiful. 

So, I share it out of honesty and also hope.
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Our summer holiday this year (this is actually about the only time he hugged me the entire week! less said about that the better…)

Oh my beautiful boy.

I think back to when you were tiny, sleeping on my chest after a feed, so cosy and tight, and I wonder, how did you become something that we aim to manage? 

How did our days become about achieving the least resistance possible – stickers, special treats, and getting you out of the door for preschool on time? About stopping you scaring your baby sister with your over zealous love; always, always living in a battleground between your needs and mine. (And your dad’s, and the baby’s, and that dog’s, and the rest…)

You deserve so very much more. I remember when I brought you home from the hospital, and I cried everyday for the wonder of you. You deserve a mama and a daddy who wake up everyday, delighted for another day with you. And I’m sorry. I’m sorry you don’t have that, I’m sorry this mama and daddy find you too much. 

You, my boy, you make the moon in the sky and the stars that shine. When you say to me, mummy, you’re a superstar, my heart skips a beat. When you kick me, I wonder how I could be failing. When we sit under a blanket together, that’s life. 

The heavens opened when you arrived. The boy I shouldn’t have had – promised by God – here you were. I lived on a cloud, nothing could touch me now. I remember so carefully sitting up in bed to feed you every time, because I was too scared to fall asleep beside you. I remember how you woke every 2 hours and it didn’t occur to me to try to fix it, you were just you and I was so grateful for everything that was. 

When did that change? 

When did it become that everything you do is wrong, that you carry yourself shyly at times and apologise for existing? How did that happen to you? How did it become that I fear you, that I don’t take you places in case you lose it and embarrass me? That every time I look at you, all I see is our failings, etched over your countenance? 

I look at your sister and think, we’ll do it better this time, because we’re less anxious. You carry everything, you carry all our focus, all our corrections, all our hopes and fears. Everything you do feels scrutinised to me. I can’t count the times I’ve thought, I hope your sister isn’t like you, I can’t do that again. 

How did it come to that? 

How did we come to live in a world that little active boys are a problem, that there’s no room for play fights and working out aggression? No room for running around wild and free? A world so dangerous and not built for you that we have to keep you locked up with a screen. 

I’m so sorry. I wish i could do it all again. I wish i could go back and care less about the aggression, and celebrate the person you are. I wish I could go back and feel less overwhelmed, I wish i could go back and enjoy those moments instead of sitting around in a dark world waiting for ISIS or Ebola or climate change to get us. Two years, two years we lost. Two years. Two years of fighting every day, fighting my guilt for bringing a child into this world, fighting the desire to check out, two years of worrying whether my God exists and imagining dark deaths every time I close my eyes. Two years of learning to say, I can’t protect my baby and that’s enough. I don’t know who God is and that’s enough. Two years of learning to say, this moment is it, I can’t control the future and that’s OK. Two years of asking God to send me somewhere else or remake my decisions, two years of asking him to keep you safe, two years of being so afraid of death that I forgot to live. 

I’ll never get those years back, my love. We’ll never get those years back. I can’t go back and remake myself into a better mum, a mum who sleeps and bakes and limits your screen time. What we had is what we had, just you, me, my demons and that bloody screen every day. And it’s not going to happen any more. You will feel like the special little boy I brought home that time. Not because I say it, but because I make you know it. 

You will feel like all that you are. 

I’m so sorry. I wish you had had the mum you deserve, but something I know is that you made my world, you made my world when you came home that day, and you make my world every. single. day. You are it. 

You make the moon in the sky and the stars that shine.

He was 3 months old here

Aspergers, Obsessions, Routines, and Why I Love the Way I Am

“Rock bottom became the solid foundation on which I rebuilt my life” – JK Rowling

**Disclaimer: I only write from my own experience, and don’t intend to write for anyone else’s experiences, around aspergers or anything else.**

The other day, I was sat in the car, thinking about how I’m not allowed “regular” interests any more, since I was diagnosed with aspergers. I can’t remember what prompted this thought. We were on holiday. But I was thinking about how different aspects of my personality are pathologised now, and that got me onto a post I’d seen recently on Facebook, about how difficult autistic children’s “obsessions” are for the child’s family to deal with. 

I wonder if people know when they like and share these articles that they mean me. 

I wonder if they see me, aged 8, and my interest in the Tudors; reading history books aimed at adults and desperately trying to share my interest with my teacher, who didn’t seem to want to listen. (I learnt young that people weren’t interested in what I had to say.) 

I wonder if they see me, a teenager, and my interest in clothes; bullied at school and planning all the things I could wear differently to avoid the eye of my peers. 

I wonder if they see me in my twenties, staying up late reading about birth; so rapt in birth stories that I would read… And then just another one… Until I realised it had become 2am. 

I wonder if they think about how I feel, seeing articles talking about how difficult it is to live with me. 

Me as a baby

From a certain viewpoint, I do indeed get obsessions – that’s one word that can be used. The National Autistic society warns my children that they might not understand my “intense interest” in trains (eye roll, eye roll, so much eye roll). 

I am weird, I am other, that’s the prevailing view of autism, that’s the loudest voice and the one that seems to get most likes and shares. 

But from another point of view, I can have very focused thinking which can be an amazing advantage. I only realised I’m like this since realising I could be identified with aspergers. Realising this about myself has boosted my self esteem no end… As long as I remain in my own head enough and stay away from too much conversation “about” autism as an entity.

If I really want to do something, I can almost always find a way to do it. I learn about things very very quickly, I do this without realising. If something piques my interest, I’ll read all about it, and if it’s really really piqued my interest I’ll learn all there is to know about that subject. Sometimes this can be something that doesn’t have much daily relevance, like with the Tudors, but the older I get, the more useful it becomes. 

I don’t mean to sound complacent or arrogant about this, but it really has been such a life transforming revelation to see this in myself after 30 years of seeing myself as stupid and not good enough, and I’m totally going to own it baby!

“Grace means that all of your mistakes now serve a purpose instead of serving shame” – Brene Brown

I used to have a birth phobia; it caused recurrent nightmares and led me to decide I didn’t want children. In my twenties, after I met my now-husband and started to want a child, I naturally started to research birth, and what started as a mild interest quickly became something I probably knew more about than some midwives (in theory not in practise!!). Doing all that reading totally eased my phobia; it gave me ways to prepare for birth practically, and it led to two challenging and differently empowering and wonderful birth experiences. Neither of my births were quick or straightforward, and I had to navigate different obstacles with both. All that research stored away inside my head helped me to know what was best for me, and to navigate those situations relatively easily. 

When we did IVF, for months beforehand I read everything there was to know about the process and how to prepare for it. My life was IVF. Again, that stemmed from anxiety, and wanting to overcome the anxiety rather than be controlled by it. I remember my counsellor saying afterwards – I’d been seeing her a couple of years – the way you handled the IVF process impressed me so much, you just put your head down and got on with it, and you knew all of the steps so well. I was so surprised and touched that she thought this of me. I had always seen myself as such a flake – the person who failed at standardised learning, despite what teachers kept referring to as “potential”. I think that was the first time I started to take notice that I have this ability. 

By far the biggest gift I have seen from this way of being has been in tackling my mental health. When I met my husband, I was 23 and having a massive breakdown. With his support, I was able to pause and look at the situation. 

I decided I wanted to really understand what was going on, and to rehabilitate myself into society. I had not long walked with my ex through the loss of his parents to addiction, while also spending time with them at a rehab facility. I also through those situations got to know addicts who had overcome their addictions and who talked openly about their experiences. I watch things and learn, and decided I wanted to employ the tactics of acceptance and recovery I had seen through them to my mental health. Watching their deaths shocked me into realising that that could be my reality, too – I had also engaged in self injurious behaviour to cope with the pain underneath. That experience led me to realise that if we had children, they would carry the weight of my unprocessed pain.

Me soon after meeting my husband, right about the point I decided to be honest about things and try to turn my life around

I moved to live with Pete, and decided not to go back to work when my sick note ran out. I set about to create a therapeutic lifestyle and to allow myself to feel all the repressed pain I was carrying around – to cry all the hurt locked away – believing that suppressing it was causing my depression. That was the moment I started to get a glimpse that when I need to tackle something, I’m strong minded, able to see new and creative solutions to problems, and have the willpower to push them through. 

In creating this therapeutic lifestyle, which is always a work in progress, I have discovered ways I naturally handle change and process trauma. When I was allowing my childhood trauma to come up, I would watch seemingly endless episodes of Criminal Minds, really late into the night. Years later, recovering from a C section, I held my newborn daughter and watched infinite back to back Say Yes to the Dress. Entering even a pretend world that is predictable, formulaic, and contains familiar characters is comforting when things around me are unsettled; it helps me cope with my own transitions. 

I function best when I allow these things to flow naturally and do not attempt to set limits around them (as parents are often encouraged to do for their autistic children). I move on from an interest when the need has been fulfilled. Particularly when I was recovering from my breakdown, I found it very healing to allow myself whatever I needed – it felt like reclaiming my needs and my personality. 

All my life I’ve relied upon rituals. These encompass everything from the benign – washing my hair and shaving my legs on alternate days – to the cancerous, at one stage counting and restricting my food intake while also pursuing a punishing exercise routine. 

In my young adult life, I was convinced that the right routine would bring me the stability and ability to cope I so longed for. If I couldn’t fulfill my expectations – if I was injured and couldn’t exercise, for example – my whole life would fall apart. However something I’ve noticed is that the more and more my lifestyle encompasses my needs, the healthier and more balanced my routines are, and the more adaptable I am. 

Many people have a need for routines, and my husband does too, something he accepts in himself without judgement. That has helped me a lot and we complement each other in that way. 

Having my diagnosis gave me the freedom to realise that these ways of thinking will never leave, they are an important part of me. As I have grown to know and love myself through the years I’ve been working on my mental health, the changes I’ve seen in my need for routine have echoed the positive changes in my broader patterns of thinking. 

“Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, some imagination embraces the entire world, and all there will ever be too know and understand.” – Albert Einstein

I do still experience struggles with my way of thinking. It’s only since my aspergers diagnosis that I’ve realised I could be identified with a form of OCD called “Pure O”. I struggle with repetitive intrusive thoughts and imagery of a devastating apocalyptic future, and within that images of horrendous violent things happening to me and those I love. It started when I was 12 after my dad (who worked in the field) started talking to me about climate change. After that I spent my teens feeling suicidal with no reprieve from my thoughts, because I had no tools for tackling them. They then came back three years ago, triggered by the responsibility of becoming a parent.

It was actually due to the return of these thoughts that I ended up realising I have aspergers, and after I realised about my aspergers, I thought, I can sort this fear out, because I am made with the strength of mind to do it. I have examined my fears inside and out, I’ve sat with them and learnt from them, and my ability to focus has helped with that. It is getting better, a LOT better. I’m no longer suicidal when I think about the challenges the world faces, which feels like an amazing achievement. It’s probably the thing I’m proudest of, because the thing that has changed isn’t me no longer seeing the world as hurting and broken – I still see it as I did. I’m still concerned about climate change (to put it mildly!) and a lot of other things beside. But I have come to respond to those fears differently; I don’t get the intrusive thoughts any more, and when I do I know what to do with them, and that’s very freeing indeed. 

“Sometimes when you’re in a dark place, you think you’ve been buried, but you’ve actually been planted” – Christine Caine

The other thing I struggle with is that, because I focus hard, I can’t really focus on more than one thing at once. My focus isn’t directed, it goes unbidden to what interests it, and I can’t multitask, like apparently women do so well (eye roll). It’s a real pain when it comes to running a house, preparing food, etc. But something I find is that since I appreciate what my brain CAN do, I worry much less about what it can’t. 

But overall? 

Overall I am grateful for the way my brain is made. It’s imperfect, but whose isn’t? I’m learning to understand and appreciate the way my brain works all the time. Since my diagnosis, I look back over my recovery, and realise that what I have been doing all these years is learning to accommodate and accept my autistic needs… And that as I’ve learnt to do that, my brain has been increasingly able to do the things it is good at. I feel beyond privileged to live in this particular unique time and place which has granted me the opportunity to learn to love and understand myself. 

I wonder whether, if I hadn’t had to use my focus to reclaim my mental health, I might have spent my twenties using it to study for a PhD, set up a charity, or run marathons. I speak about my diagnosis for those people diagnosed with autism and aspergers growing up now; adding my voice to the conversation about how to support them in the hopes that they will be able to use their brains in ways I wasn’t. Because you know what? The world needs brains that can multitask and uphold the fabric of society, but it also needs brains that have a good sense of detail, are able to focus entirely on a project, and are willing to challenge convention. 

However your brain works, I think it’s important, and you deserve to use it to the best of it’s ability, for the benefit of the world. If you can’t see that right now, please just trust me on this, and hold on for a time when you can. You have a good purpose. 

Despite everything I’ve been through, honestly? Even with everything, I wouldn’t change a single thing about my journey, because through it I’ve been able to find such happiness. The challenges and the dark times make the sunshine and the love of my little family so much sweeter. And I’ve faced enough challenges now to know, if I hold on long enough, the sunshine always finds a way back. 

“Imperfections are not inadequacies; they are reminders that we’re all in this together” – Brene Brown

Further Reading 

This is my favourite article on autistic “obsessions”. It’s awesome, read it

This is a page of links to useful resources about aspergers in women, with a table of typical traits.

If you relate personally to anything I’ve written, you might find it helpful to learn about the “Highly Sensitive Person” – here is a good place to start. 

Finding Home

Ministering to myself often feels like crying. Like hopelessness. I sit in the dark, forgotten corner, amongst the washing, and mourn. I mourn for all that is not, for all that I have lost and for all that I have known. I acknowledge the darkness of the world, of my experience. And for a time I feel like I can’t go on, I feel as though everything is too much. 

But then, after a time, I arise, tears fresh on my cheeks, but now dry, unseen. And I go back to my children, to my husband, to my dog, to the land of the living. I take with me a bleeding heart, an open heart; I feel raw, unsteady, skinless. But I take with me also something new, something fresh: hope. Having yielded to my pain, my eyes can now look beyond me again, they begin to look outwards once again, to them. Not healed, still broken, but with something now to give. 

Our In-between Summer

my in-between-boy on a summer walk

My son is having a difficult summer. He finished at his preschool, he left his best friend and his keyworker, and he’ll never be with them every day again. He might never see his best friend again. At 4, he has no control over whether he ever visits his preschool again or sees any of those people again. He has no Facebook or mobile phone to keep in touch with them. And, having finished there, he has nothing with which to fill his days, nothing to fill him, just this big empty loss gaping inside. We are in limbo land, sitting around waiting for new preschool, watching telly, taking walks, going to the cafe for lunch. Every day he wakes up and he doesn’t know what’s coming. And the suddenness and completeness of his loss – that I imagine clarifies the complete lack of control he has over day to day. 

It is so hard to be with him in his pain. He lashes out at me, at his dad – of course he does, we are the orchestrators of his loss, I am the one who chose that he would finish there, conversations his dad and I stop casually had, conversations I so casually had with other parents. He is part of a system he is a pawn within; I know he can’t stay there forever, I know the loss will come at some point, and I too am powerless, powerless to prevent that loss; at some point it comes and at some point we will all have to weather this storm. So now it is. Now I have chosen is the time he shall weather it. 

What has surprised me is the amount I want to stop him. The amount I want to shut him up. The times I do attempt it. Don’t speak about, don’t speak about it, please stop crying and shouting and let’s pretend everything’s OK. Because when I don’t do that, when I allow his pain, I allow also the truth that this is my doing, that he is experiencing this through me. I want to pretend I’m a parent who doesn’t have to make tough choices. I want to pretend I’m a parent who never doubts my decisions, who never feels this remorse. Who never relives my own childhood losses, my own times of powerlessness. 

So in this muddle I sit, listening to him rant and rave, feeling like a failure, trying to hold space for his emotions and provide some form of comfort, while doubting myself all the time about what that should be. Feeling every day a culture that equates childhood smiles with maternal success. In this muddle I want him to learn, it’s OK to feel like things aren’t OK, it’s OK to cry, big boys sorrow, big boys get hurt. It’s OK to feel like everything’s upside down. You can come out of this bigger and stronger through having lived it, through having not denied it. 

But almost every day some attempt to manage his behaviour comes out of my mouth. Every day the way I want to behave and the way I actually behave are in conflict. 

Just be quiet. Stop hitting. Stop feeling. Can you just be a little less, a little less, just today, from now on.

And I wonder, if we didn’t ask children to be quiet. What if we didn’t shush their tears. How many more poets would we have. How many more lovers. How many more activists, how many more preachers, how many more bringers of hope and waybearers through sorrow. How can we find that, how can we give that to a hurting world, when all we know is shush.

IVF

My daughter as an embryo

IVF.
IVF is pretty much the shittest thing I’ve ever done. 

I really would quite like to have the possibility of another baby in all honesty – just there, on the table, a possibility – but even if someone paid me, I don’t think I could go through it again. 

There’s the financial pressure. Tons and tons of money is going into helping your body make a baby. Even if you’re not paying for it (as we weren’t, thanks NHS) that’s a pressure, because you know it’s something you can’t afford on your own. You know you don’t get many shots at this. So you have to be all in. You have to make it count. That pressure is just horrendous – analysing every single thing you eat, take, and do. My brain was pretty much a whirlwind of the best vitamins, the best foods to eat, the amount of activity I should be taking. It never stops, I never felt relaxed, I never felt I was putting enough in. 

(I was putting enough in.)

About 6 weeks pregnant with my daughter

Then, there’s the medications. Will they give you cancer? Quite possibly, no one really knows. But you do it anyway because you’re just desperate for a baby. 

Will they give you side effects? Abso-fucking-lutely. Your stomach will blow up like a beach ball, or at least it will feel like it will, and it will hurt, but you’ll be pleased, because that means your ovaries are Responding. So that’s good. 

And then there’s the sedation, while they collect the eggs. 23 eggs they got out of me. Through a needle in the wall of my vagina. And some women sleep through it apparently, but others don’t, and they shout all the time… But you won’t remember, so that’s OK, and the nurse will tell you you slept through, but you never know if she was telling the truth or being kind. 

And at every scan you are desperate to hear how your ovaries are doing, and after the egg collection the first thing you want to hear is – HOW MANY EGGS? And you have absolutely no control over it, absolutely none at all, but you feel like you might possibly, so you feel vaguely anxious and guilty all the time. 

Then if you’re lucky the embryo is transferred. You lie on a cold theatre table with your legs spread and your husband by your hand, and a speculum is inserted, and then you feel a strange pressure while your tiny tiny baby is guided into the uterus. And your husband says your uterus looks like a mouse, so that’s all good. 

Waiting to have the embryo transferred

Then you get to go home. You’re afraid the embryo will fall out, you don’t want to move, that’s thousands of pounds and all your hopes and dreams inside you, but you force yourself to the car, and your husband drives home. 

And then you wait. 

And you obsess about your body, about every little twinge and change, and you doubt yourself and your body – because after all, it’s not made a baby so far, and all you’ve been told is that your body struggles to make babies. And you try and keep busy for two weeks, while not being so busy that the baby falls out. 

And that’s it really, IVF. After that you have a baby or not. I was lucky enough to have two. But something they can never prepare you for is how it feels, being pregnant and having a child after all that. Nobody warned me that I’d be afraid to lose him all through the pregnancy, that I wouldn’t believe I was pregnant, that I would doubt my body. Nobody would tell me how convinced I would feel that we lost him. Nobody would tell me that the memories of the before time never go away. Nobody would tell me how the gratitude sustains. Nobody would tell me my vision would grow a rose tint and I’d so quickly gloss over so much. 

My son in utero

 

Sam’s Birth Story

Originally posted here – http://attachmentfeminism.com/a-hospital-birth-birth/

A hospital birth – #Birth

My darling, generous, giant-hearted boy,

You start to make your way on a Thursday night at 11.30. Your due date is the very next day, Friday 26th July 2013. A day longed for and feared.

See, I had experience of birth trauma, although not my own: I knew it to be real, had seen the marks it leaves. I feared childbirth so much as a consequence that as a teenager I decided not to have any children. And then something changed that. In September 2006 I had two visions (whilst reading ‘The Time Traveller’s Wife’ at 4am): of giving birth, and then of me walking hand in hand with a little boy. From that point on my life became a search for that little boy. A journey through diagnoses, despair and fertility treatment consumed the next 7 years. That journey took me to blogs like ‘Birth Without Fear’, and in the years before I fell pregnant I consumed birth stories, and they rewrote my understanding of it.

The one thing I continued to really fear was the Pitocin drip: the author of the aforementioned birth trauma focused on this drip and how to avoid it, and I decided not to accept induction until 42 weeks.

So I am thrilled when the first twinges of labour break. From the moment I feel the first contraction, I know this is it. You moving. And then… nothing.

Overnight, the contractions stop. In the morning of the day you are due, I visit the chiropractor, and walk the two miles home. The contractions start again, and I begin to lose my plug. Your daddy and I walk around a local wood, with me stopping to lean on him several times to breathe. It is SO exciting.

And then, again, nothing (apart from my bowels moving, and then some!). For the two days following, the pattern continues: contractions start, contractions stop. I almost break. I want you here so much. By the Sunday I fall into a despair, convinced you will never arrive. I will need that induction for sure.

Thank goodness for Emma, your doula! On Sunday evening I experience the worst pain I encounter during labour, excrutiating pain in my lower back and pelvis. It feels like I am being torn apart. I can feel it even now, almost two years later, as I write this. Sharp, unremitting pain. Terrified, I ask Pete to ring Emma. She knows I am discouraged, and advises us to go to the hospital. Her advice is that having an examination and seeing progress will encourage me. So off we trundle, birth bags in hand, at almost midnight on Sunday 28th.

An examination reveals 1-2cm dilation and semi effaced, and a sweep proves easy to do. I am ecstatic! The midwife phones the birth centre and tells them to expect me the next day. She also tries to talk me into staying for an induction (can you not see I’m in labour, woman?!), as you’re an IVF baby now past 40 weeks.  You’re OK, I’m OK, we’re all going to be OK. The consultant comes and is very amenable to an induction sometime after 41 weeks. We are ‘allowed’ home, and inside I’m singing.

And then labour really begins. Deep, grinding pain in my pelvis that requires me to move constantly. I know, know, know in my heart that you are back to back. I know too much about birth not to. But I try not to think about it, to convince myself otherwise.

All through your pregnancy I had felt so cautious about your birth. Before falling pregnant, I dreamt of a home birth. But then you arrived, and you demanded a different entrance. A home birth didn’t sit right. I opted for a stand alone birth centre, but whenever I pictured your birth, I couldn’t picture it happening there. I was worried I was setting myself up for failure, but I couldn’t force a vision that didn’t feel right. As I look back now, I see the holy spirit weaving throughout your pregnancy, warning and preparing me. I prepared for a natural birth, and yet also for a complicated birth, and a c section.

After labouring firstly in bed and then the living room overnight, I wake your dad shortly after 5am. He rings Emma at 6. It’s time to get this show on the road! Emma arrives and from this point things begin to get a little hazy, but I remember leaning over my birth ball on our bed, intermittently watching ‘Raising Helen’ and tuning into my hypnotherapy cd. I remember that so fondly. Your dad and Emma sit downstairs. Then I remember Emma timing contractions and your dad running a bath. I never make that bath as Emma estimates it’s time to go. I am so happy to get going. I feel anxious at home, knowing the drive awaits.

The drive is pure hell! We make it half way before I demand to get out the car and plead with Emma that I can’t do this. She tells me to get on my hands and knees in the footwell, leaning over the seat. I do this (to what I imagine must have been horror in your risk averse dad!), practise hypnotherapy, and wow, what a difference.

We pull in at the birth centre and I remember feeling so excited: here we are, where we are finally going to meet you. I am examined on arrival (with my explicit and fervent consent!) and found to be 4cm, and thence admitted. I am so glad to get that check and see how things have progressed, I feel so very proud of our progress, sweetheart. We are doing this thing.

It’s midday.

We labour for another four hours. And we labour everywhere! I like to be outside, and I like to walk, so that is what we do. I stand outside with you in a thunderstorm and wow that is special. A memory to truly treasure. The rain feels so good. I like to explore (you do, too!) and we explore the rest of the hospital. I don’t care what other patients or staff think. I am a woman in labour, I have waited my whole life for this, and I have special privileges.

After four hours I am checked again, and am found to still be 4cm. It’s disappointing, but I’m not that aware of it, as I’m away in my natal hypnotherapy zone. Normally things not going to plan really floor me. On reflection while that time exploring was so delightful, it probably didn’t help me ‘progress’. Now I am really concentrating on labouring, rather than wandering around nicely, and things really pick up. I start to doubt myself, and whether I can do this. I remember sitting in the toilet and asking myself, have I got what it takes. Are we really going to do this. Emma and Pete are applying counter pressure to my lower back almost constantly, I remember worrying in the back of my mind about how sore their hands must be getting, but not really caring too much!! One of my favourite memories of labour is during that time, I am draped over a birth ball, holding one of your babygrows in my hands. We hadn’t found out your sex but I remember holding that babygrow and thinking, ‘my son will be here soon’.

In another two hours I really want to get in the pool, so have another check. Success! I am 6cm, fully effaced, and elated. However, the midwife also finds you to be back to back, which is no surprise to me or Emma, but a surprise to her, as apparently from my bump shape you feel the right way round (I don’t know the science on this to back up my theory, but I put that down to having a large anterior placenta). She then notices a gap in front of your head, where your head is not fully covering the cervix. My hind waters have gone, but my front waters remain and the midwife worries that as they go, they will cause a cord prolapse. She recommends transferring to hospital as forceps are used to deliver in the case of a prolapse. However she is very low pressure and gentle, and assures us that it is entirely up to me. She then leaves us alone to decide. Pete and Emma encourage me that we can stay, but I have rarely felt so calmly decisive and assured as I did in that moment. The memory of that moment will always stay with me. With complete clarity I know I want to transfer to hospital. I think you told me you needed it.

So another tub has been run and abandoned!

An ambulance arrives for me; your daddy and Emma travel separately. Your dad is my strength and I hate being apart from him, even for half an hour, in such a vulnerable state. I feel pretty scared, and also surreally calm. My labour begins to slow down again. The nurses in the ambulance advise me that the doctor will recommend the drip, to move your head down into the correct position, covering the cervix. I remember feeling very calm and assured when this is suggested. I know what I want. I will accept the drip but before it is placed I want an epidural. I believe having this alongside the drip will help prevent trauma.

We arrive to a hospital in chaos. The other city hospital has closed their maternity unit and all traffic is rerouted. The one consultant on duty is in delivery after delivery and we wait for three hours to see her. Three hours! Those three hours were so tense. I walk up and down the short hospital corridor with your dad, feeling like a caged animal, willing my body to close up and my waters not to break. I have a few contractions but they barely trouble me. My mind is on other things and my body responds accordingly, helping keep you safe. When I look back I see that as such a strong time and I feel so proud of us, baby.

The doctor finally comes and we all agree on drip and epidural. I have an examination, and am found to be 4cm again, and my cervix has thickened up. Later a midwife tells me that this means I could never have been 6cm and fully effaced. I have read Ina May, luckily, and understand that my body has been closing up to protect you as I felt you were threatened. I feel really awed and proud of my body, and also intrigued to experience these things happening in real life instead of just through books and PC monitors. The epidural and drip are placed, and by this time it’s about midnight… four days exactly since my first contraction.

I don’t feel at ease or at peace in the hospital, the atmosphere is so tense and I can hear labouring women screaming in pain, which is really frightening. That sort of thing really affects me: I can’t watch violence on TV, I struggle to read the news, and I can’t block the noise out. I wonder how women can ever labour naturally under these circumstances. Luckily the epidural works well (apart from one time when I lie on my side too long – ouch!). I lie on my back all night, while Pete and Emma try to rest. My lovely saviour through the long night is my midwife Julie, the only midwife I remember by name. She is young and blonde, and we have a lot of the same ideas about birth. I feel as though she is our lifeline, baby, through that long night. Although I’m not in any discomfort, I miss labouring – the focus, the intensity, the activity. I observe transition – vomiting, shivering – as though it is happening to somebody else. I can’t sleep, I’m having my baby!

I am worried about the drip being turned up as I have heard of that happening without consent; luckily soon after it is placed the monitor picks up a heart irregularity in you, luckily because it is swiftly deemed not to be you after all, or anything to worry about, but because of this the drip stays low the whole time. I am so aware of God watching over us.

Finally I sleep, right before my examination. Julie checks me. Despite experiencing transition, I half expect to hear that there’s been no progress and it’s time for a c section; I’ve been preparing myself mentally all night. She’s quiet and my heart sinks, so I almost don’t believe it when she says that I’m fully dilated. Pete is awake and so excited! We’re going to meet you! I sleep as they give us another hour to help you descend.

I start pushing and it’s the flat-on-my-back, coached pushing that nobody wants. Julie has been replaced by two midwives I’m unfamiliar with. But I feel safe because Emma is there, protecting us, keeping us safe. Just her presence is so reassuring. I push for what feels like five minutes (in actual fact it is an hour and a half), with the epidural turned down so I can push more effectively – ouch! But it is very nice to feel like I am doing something again, engaged in getting you out. The midwives get excited as your head bobs down and then disappointed as it retreats up again. The midwife mentions the Dr, an episiotomy, forceps – and all of those things feel like threats. Like I am supposed to be scared and not want them, and  as if they think I am a little girl who should try harder to avoid them. But I am not scared, I feel totally at peace, somehow I know that these things will be necessary and I want them to get on with it.

I wonder why they are waiting. Nothing makes much sense in my disjointed labouring brain, I am somewhere else, in labour zone. I’m here to do and a job and it needs to get done. The one midwife insinuates that I am not pushing hard enough because I am afraid of the pain and I wonder how much harder I should be trying?!?!

The doctor comes in, episiotomy cut, forceps applied. Blessed relief! I am so happy for them to do this. Quickly, quickly, baby, you are born. Back to back, still (thanks epidural!), and with a short cord wrapped around your neck, which Emma suspects stopped you descending. Nothing but nothing can quench my feeling of vindication. Daddy cuts your cord – very quickly and in haste, not delayed as we wanted, because of it being so tightly around your neck – and tells me with have a boy; it doesn’t seem real. You are taken for a little resuscitation. I could not be happier that this happened, was available to us, and that you are safe, but I will always feel a little sad that you didn’t get the blood from your placenta.

I am far too tired to take much in. The biggest surprise of childbirth is the exhaustion I feel afterwards. The rest of the day I spend watching you with your daddy in amazement, in between attempting to shower, wee, and greet grandparents. We are left in the delivery room amid the blood and the muck until nightfall, and it is far from glorious. But you are here. It doesn’t begin to sink in that you are mine for a couple of weeks, it’s a surprise to adjust to having a child after all we have been through to conceive you.

You are born just after 9am on the 30th July 2013, weighing 8lb 11.5oz. You are a boy, Samuel Joseph, just who God told us you would be: symbolic of his triumph, his glory, his neverending life. I love that you chose to be born facing up, it may not have been the easiest exit but you have always preferred to do things your own way.  Emma reckons that had we not transferred from the birth centre when we did, we’d have had to transfer during pushing because of the cord issue. I am so so glad that that didn’t happen, and I feel you were warning me – we were in tune, and that’s why we were already at the hospital. I’m also so glad for the epidural. After four days of labour and pre-labour, and little sleep during that time, the respite it provided before I needed to push and face another two days without sleep was sorely welcome.

Baby, from the minute you arrive, I feel so empowered. I am superwoman. You make me a who I am, you take me from the painful world of infertility to motherhood and you help me to rise and shine. The glory and the reward is all the sweeter because I had that bloody drip and not only did we survive, baby, but we thrived! No trauma, but everything working together.

Your birth was so tough on you, my darling. I feel so conflicted to have found your birth so personally empowering while you were traumatised. Your head was so pointy and misshapen from the forceps, you cried the whole night your first night, and you struggled to feed until the next day. I am so sorry your experience was so rough. But I am so proud of you for how you recovered from it. Your head recovered quickly. You learnt to nurse by the day following your birth, you gained weight quickly and have steadily followed the 75th centile line your whole life. You have never yet spent a night crying again. You are so strong and so vibrant and people always comment on it, and on your confidence. I’d like to think this was down to how we parent and the people we are, but honestly sweetpea, it’s you: you came into our lives as you are, like a whirlwind, and you have remained constant, teaching us the things we have needed to learn (although we don’t often keep up!). You are completely and utterly different to me, and to your dad, and yet I see us come through now and again, in different ways: you have parts of us, and yet are entirely and undeniably yourself. We love to see you shine; we are so proud of you; now, then, and always.

I have heard often that women feel failures when their bodies don’t progress on schedule, or that they are broken for accepting intervention. I don’t feel that. I feel that everything was in tune: you, me, the holy spirit. Mostly, I feel I look back and think, yes, that is how it was supposed to go. That is how you were supposed to be born. That is how I was supposed to become a mother. Sure, if we get a next time, I’d love one of those beautiful peaceful births. Who wouldn’t?! Maybe even at home. But, baby, if that had happened with you I would have gained so much less. I would still have lived in fear of that drip. I would still have doubted my body and my tenacity. I would have worried, in the case of conceiving again, and lived under the same reality of birth trauma my whole pregnancy. You freed me from birth trauma, you took how I saw birth and turned it on it’s head. You taught me that I can trust in my faith. And I’m sorry that you suffered in the process, and hope to never take that away from you.

Your birth wasn’t perfect. It was messy and there were bits that I would have changed: the way the midwife spoke to me, the way we felt abandoned and forgotten about after your birth, being separated from your father in the ambulance. How tired I felt afterwards! But there was much, much more that was way, way better than I could have ever hoped or imagined. In the week after your birth I tried to talk to anyone and everyone about your birth. It mattered not that no-one was interested or that they often preferred me not to. I had been through this amazing life changing experience and I wanted to share it with the world, even the gore and the muck; I couldn’t hold it in. And that feeling, that feeling was very precious.

Nightweaning

I night weaned my son when he was just 2. He had been feeding through the night since he was born, he was always a frequent waker, and to adjust to that we bedshared and he would feed when he needed to resettle through the night. It worked for us, I felt less stressed and got more rest that way (although not enough rest! Haha).

I started to cut his feeds down so that we could start fertility treatment for #2, I was terrified to do it as I had never needed any other night time parenting skills and I was so concerned about how the change would impact him. I night weaned by telling him there would be no more milk until morning from now on (or words to that effect). I stayed with him as normal, but didn’t feed him. He was very sad and cross, as expected, but he just had one night of crying, we cuddled and I sang to him, and after that back strokes settled him and he started to wake less frequently overnight.

I was so proud of us afterwards, together we made it through that experience. It made me feel closer to him than I ever had before. We found ways through it together and grew together, and whenever I look back on that night I feel so emotional. It taught me that we could navigate difficulties and transitions. I also remember the unfailing support of my other half who was there all night, and who has always taken for granted my right to choose how I feed our babies.

I wrote this at the time to remember that special night. He’s almost 4 now, and rereading it always takes me right back to his babyhood.

———————

Bird –

Shrill and sweet, we lie side by side, arm to arm, united in your cherished infancy still, and listen. You look at me, wide eyed – ‘bird’ – as the light creeps outside; no children playing, no daddy sighing or neighbours hammering, it’s just you and me, baby.
You snuggle into me as we slip towards our unknowns, your tummy warm and full at this final 5am.

Midnight –

I lie in bed, listening to sorrow, my tummy clenched. This is it, I always knew it, this would be it. This would be how it would go. In salty desperation I tell You, no, no, no, this can’t, this won’t. Not like this.

Quivering, you cling, discombobulated.

I search inside for tools I’ve never needed, rusty screws.

And creakily, gingerly, we arise. Flickering, I sway… I feel your hot breath on my neck and suddenly it’s just us, it’s just you and me, baby, and it’s a closeness I’ve never known. And we stand, and I sing, and I sing, and I sing, until, church mouse, ‘sing gain’.

Oh how my cheeks run hot.

And then, when my back runs raw & my heart o’erspills, we sink, together, all three… And you, you in the valley – you in the valley, gazing neither left nor right but fearlessly ahead, you unlock the unthinkable and you sleep.
And then, my baby, you are a man.

And I, I hold your hand. And together, together we walk, stumbling, falling, tarrying this new path.
Thank you, thank you my darling, thank you for all the hours you gave me.

Thoughts on baby feeding

So apparently it’s national breastfeeding week. I can remember after Sam was born, my first national breastfeeding week, the feeling of being part of an online community and sense of solidarity etc – and the awareness that for others national breastfeeding week isn’t that at all. Three years on it’s different, I didn’t notice this one sneak up, I don’t think much about breastfeeding these days in all honesty, I just do it. Don’t have much time to think between two smalls, one pooch, and one preschool run.

I have often wanted to write about breastfeeding but stopped myself because the words are many, the pain is real, and the situation tense. It’s easy to put words out there, but it’s hard to know the right ones.

I lie here feeding my daughter and I think, how do we judge each other over this? I know we do, I used to, before I had my son. I particularly cringe remembering how I used to judge mums who fed “too long”… before I became one of them.

When we love our babies, when we nourish our babies, as we watch them grow, we give them life. We need to be given life ourselves to sustain that; we need to be loved, love comes from love, love breeds love. So many parenting books are written with advice for parents but few with advice for the rest of humanity. What does it matter if a mother follows all the rules set out for her if she has no love surrounding her from which to draw?

I know that when I have been loved enough so that I had more to give out, that felt like being set free to be the person I am, felt like being set free to make my own decisions, felt like being trusted. In my experience, it is so hard to feel that as a new mother. The world comes at you with it’s own agendas, with it’s own set of rules, all the voices seeming so sure and so competent at a time when you feel so totally vulnerable. Everything saying “pick me, pick me, choose me, choose this way”. And you feel so unsure, so unready, and all the voices tell you that the stakes are so high.

All this to say, I breastfed my first baby for 2.5 years, and I’m now feeding my 7 month old. I love feeding my babies. I had help to conceive my babies, I had help to birth my babies, but my babies I am physically able to feed all myself and that has meant a great deal. Breastfeeding helped – still helps – me reconnect with and love my body after IVF, forceps and C-section.

I chose the help to conceive gladly, we jumped at the chance. My translocation granted us access to NHS funding as a first port of call, instead of having to try for a while first as is standard with IVF funding in the UK. With me having a balanced translocation and severe PCOS there didn’t seem much point in waiting to see if we needed IVF, and that decision probably saved us a lot of heartache.

And then there’s birth. I dreamed of natural births. I researched birth for years before my son was conceived. I had tokophobia when I was younger – birth phobia – I used to have nightmares about unexpectedly being 9 months pregnant and going into labour. When having a baby became the most important thing in the world to me, in order to overcome the fear, I researched and researched birth and slowly began to long for the day I would deliver my own baby. I was so proud of myself after the birth of my son (forceps), but I did hope, always, that I would get another chance… and with that my beautiful water birth. Instead, my waters broke and labour didn’t establish, and after 3 days I opted for a C-section instead of an induction. And it WAS beautiful. It is one of my favourite memories. It gave me everything I’d hoped for in a water birth – serenity, connection, joy, a feeling of being totally in the moment. And I remember it, which was what I most wanted, having been too out of it to remembers Sam’s. But at the same time, it wasn’t a water birth – it wasn’t my body doing it alone, it was a team of people working on me, just like with IVF.

In complete contrast, breastfeeding has given me no problems at all – second small’s fairly minor tongue tie notwithstanding. And with my first especially, having felt let down for so long by a body that struggles to bear a baby, there was something magic in that, something so validating.

When I look at the different stages of my journey to parenthood – conception, birth, infant feeding – I think there’s something of life reflected back. Messy, unpredictable, a vivid tapestry of different ingredients. Sometimes we jump straight to accepting intervention as the most obvious course of action, and we might be overjoyed to have that option. Sometimes we try our hardest at something but it doesn’t work out, and hopefully we find peace and joy in the alternative. And sometimes everything works out just as we could have dreamed.

I have found magic in every different stage of this stage of my life, from the operating theatre at my IVF clinic all the way to Sam’s last toddler feed in his bedroom, with fertility drugs already working in my body to make the way for Eleanor.

I have found at every stage that I need to let go, step forward, and trust.

I found that from when I trusted the doctors, to when I trusted my instincts in labour, to when I started taking steps to wean Sam. I found it when I read articles by other Christians, who disagree with IVF PGD, but took that leap of listening to what I believed instead. I found it when I trusted that if I was wrong in that, I would be forgiven. I found it when I continued feeding Sam beyond the age others around me were. I found it when we trusted our newborn Eleanor, wrapped in swaddling, to a doctor with a pair of scissors. I have found it with every ‘first’ – when I gave five months old Eleanor formula, when my babies started solids, the first time I left them. I find it each and every day in new and different ways.

I think in our culture, if you breastfeed for a “long” time, you’re meant to have either really thought it through, and have really good proper scientific reasons that you can defend vigorously; or you have sort of got trapped and don’t know how to stop. But what if you carry on just because you like it? Just because it means something to you? Just because you think women should be able to use their bodies as they see fit and you fancy a quiet act of revolution? And you don’t really care how your friends feed their babies, but you do care that they are heard, that they have choices, that their bodies are their own too, that they don’t feel embarrassed to feed their babies in public.

I often think that breastfeeding made me a feminist but on reflection I don’t think that is true. I think feeding a baby made me a feminist. I imagine that if I had fed my first baby another way – pumping, formula – I would have experienced much of the same that prompted the decision: judgement, corporate ownership of my body, the expectation to conform to someone else’s alien narrative.

I worry about where new mothers are likely to find each other at a time when, in my city, sixty out of seventy children’s centres are being closed. When library hours are being reduced. When antenatal classes are mostly only available to those with a couple of hundred spare quid to pay for them. I look back on my very early motherhood and I think, what kept me sane amongst all those – very well meaning – voices coming at me were the real new mothers I met, face to face. Real women navigating their own way through this strange transition in life. Real women doing things similarly and yet differently to me. Friends I keep in touch with now that those newborns are turning four.

I’m training to be a breastfeeding peer supporter, and the closing of children’s centres means that we will have fewer places to meet with new mothers. When I was pregnant with Sam I went to a breastfeeding class run by peer supporters at a children’s centre. I don’t know if I’d have breastfed without it, and then I might be feeling very differently about the help I had to conceive and birth, I might have entered motherhood feeling differently about myself. I’m training to be a peer supporter so that I am equipped to give other women that same support I had; because I think no mother should have to breastfeed, but that if she wants to, she should have the support to.

I hope that we would all find the support we need in making our new motherhood choices. I hope for a trust to grow between mothers and for mothers. I am grateful that the choice I had to make was how I fed my baby, not whether. And I share my story not because I think my choices are the ones you should make, but as an offering towards a time in which we can all share our motherhood stories without shame. And whatever yours is, I support you in that, too. I believe you are enough.

Wait

I’m sitting on my sofa, eating Ben & Jerry’s even though I have been (mostly) vegan for six months, and you know what, I can’t bring myself to care. I have nothing left. A world divided over a killed gorilla, rounding on the mother & child; attacks all around the world; wars all around the world; governments who lie; governments who seek oil and power instead of our future – instead of my children’s lives. A world in which we still have so much and yet cannot see it; and at the same time those who are by an accident of birth are elsewhere cannot eat, or lose their children on crosses. A world in which we despair and commit suicide, despite having so much. And I have nothing, nothing left to give. Nothing left in the face of such pain.

People campaigning against Brexit; people campaigning for political parties; people arguing for political leaders. People fighting against war; against nuclear weapons; against greed and climate change. People fighting for asylum seekers; people going out on the streets every day and loving; people loving the poor and the needy and the vulnerable. 

And me, I got nothing.

Emptiness. 

And it’s OK. 

It’s OK to sit in the dark and wait for Love to come. 

And I sit and I wait. And I know. Every time I have been here before, He has shown up. Every time, He has shown me a way through. 

Sometimes life hurts.

And it’s not OK. It’s not OK that the world is like this. It’s OK to feel that is not OK. Nothing is wrong in feeling like everything is wrong. Everything IS wrong.

We just have to wait. For the Love and the passion and the Power and the drive to show up again. To stir in our hearts. So we can Be The Change, Be The Change once again.

It can’t be rushed. The pain, feeling the sorrow, it can’t be rushed. True hope cannot be found in a glass of half-drunk despair. 

And one thing I know. I look back over my life, at all the times I’ve been here, and I know. It always showed up before. 

It’s going to show up this time. 

Because there’s this time. 

There’s the moment after Jesus died on the cross, before he came back to life. And everything seemed lost. 

There’s the time in Gethsemane, when he wondered, can you ask this of me? 

There’s the time when a woman labours and thinks she can give no more. The time we call Transition. 

The time before the rebirth and the resurrection. 

The time for sorrowing. 

The time the Earth waits. And the darkness seems too much. But we wait anyway. 

The times before It happens. 

We wait for the improbable and the wonderful. 

And maybe we can sense that coming. And maybe we can’t. It doesn’t matter. Just hold on. 

“The darkest hour is just before dawn” – Laura Ingalls Wilder.

Wait for the dawn.

What is so wrong with autism anyway

It’s become a bit of a bogey man in our society.

Throughout the last century traits were gradually gathered together and given a name. And along the way, the name has evolved into this label that nobody wants; so feared for our precious offspring that on occasion children aren’t vaccinated out of fear that they may end up like me.

But why is that?

I believe that autistic people have always been among us. Why are we so afraid, now that we have given it a name?

We think of autism as overdiagnosed / we say “my child has…, it’s definitely not autism” / we publicly give our children diagnoses we are unwilling to contemplate for ourselves / we talk about having “autistic traits” but don’t call ourselves autistic.

And I won’t lie – coming out as autistic was way harder than I ever anticipated, despite having prepared for it for almost a year. I thought, I’ve come out as having a Borderline Personality Disorder diagnosis, how hard can this be?! But it was – and continues to be – way harder to come out as autistic than it was to come out as BPD.

And it was hard to adjust to the label, too. I realised I fit the criteria for aspergers eight months before my diagnosis. The first few months after realising turned my world upside down. I cried all the time. I questioned my relationship with God. Almost everything in my life that I held dear could now be categorised as a symptom of a disability, from a certain angle. So I get it. I get why people don’t want to identify that way themselves. Why I have had so many people say things to me like “I’m not autistic, but… I have friends on the spectrum, etc”. (My BPD diagnosis never once triggered a “I don’t have BPD, but…” reaction.)

And I get why people grieve for their children. It’s hard to come up against something that society fears so deeply and have it thrust, unasked, into your life. It’s hard to contemplate children never speaking, or toilet training, and it’s hard to come to terms with a way of being about which very little is really known. I didn’t ask for my label and I had no idea it was coming. I had had 30 years of living in this body, and still it made me doubt everything. So I do get it, I do. And I also know that I have a certain privilege, to be able to live a life that is reasonably “normal” in the eyes of society and be autistic at the same time.

Depression, anxiety, even more ‘severe’ mental illnesses – it’s become almost socially acceptable to share our stories of these kinds of struggles. But still autism is seen as something so ‘other’. I wonder why it is so much more feared than these other labels, when such identification has so much potential to teach us about the roots of mental ill health within society, if only we have ears to hear.

When I look at the people I know who are or who could be defined as autistic, I see so often a commitment to truth, to honesty, to a new way of being. I see people who recognise patterns easily, who are naturally skilled in research, who are integrous & loyal, who don’t avoid the truth for the comfort of others. Who are natural problem solvers. Who can sometimes have a pronounced spiritual inclination, or even what might be termed precognitive awareness. I see people who look at something and see what is possible rather than what is. And who fight for it. Who agitate for necessary social change tirelessly, often to seemingly deaf ears. Who can be passionate, and single minded, and sensitive. Unusually perceptive through that sensitivity. Who often like calm and order and seek out ways to create it. Who dream.

And I wonder, how could it be that these people have become the bogeymen of society? How can it be that, for many of us, this diagnosis is the thing we so grasp at finding ways to avoid for our child?

I’m so glad I realised I’m autistic. It changed my life for the better in a myriad of ways. I see the things I am good at now. I see where I need to give myself allowances, and I allow myself to do that. I don’t waste time trying to do things I’m not made for, and I am more confident in doing the things I am. It showed me ME, and in a really wonderful way. I feel beautiful, intended, and special, probably for the first time in my life.

Autism diagnoses can highlight our strengths & validate our weaknesses in a world that often doesn’t, and they can be a tool for positive self recognition, clarity, & mental wellbeing. Just because society has come to assume disability along with the word, it doesn’t mean this way of being has to be always disabling. We are typically mostly wrong along the way to effective change; the human race is always learning.

And this is not to say that autism is not often disabling. When you have a more sensitive nervous system, things like being asked to change frequently – house, job, school, or city, as we are more frequently asked to do in Western contemporary society – can be disabling. If your hearing or sense of touch is more sensitive, to have to stand for extended periods of time in a large crowd of children running around – as we ask of our school children daily – can be disabling. If you have dyspraxia, to be put in a position twice a week where you have to catch a ball publicly – again, as we ask of our school children – can be disabling. If you have a verbal processing delay & find it easier to communicate in writing, to be put on the spot and asked to answer a question verbally can be disabling – again, something we often ask of our school children. (Just as contemporary society now largely understands that it is not easy to ask a dyslexic person to communicate in writing.) To have it implied consistently that you do not know your own mind – to be told that you should push through & overcome your revulsion towards certain foods, or fear of staying away from home, for example – can be disabling.

But – just as we adjust to dyslexia, we can learn to adjust to these needs. We can learn to listen to and believe autistic children and adults.

And I wonder what life would look like if as a society we encouraged ourselves to do this – how much less disabling autistic people would find their neurology?

How many fewer people would battle depression, anxiety, self harm, and eating disorders?

How many more researchers, authors, and social activists there would be?

How much more, in that world, would autistic people be able to offer of the strengths that come with our neurology?

How much clearer could our understanding of autism become if the stigma around it dematerialised? If adults did not shy away from such identification for themselves or their children? How many more autistic people could then be accounted for – and thus how much fuller our picture of autism could become? How many more children would grow up with less harm, more able to offer the world all that is true and good within them? How many more adults could learn to cherish and respect their own uniqueness, for the first time ever?

I just wish everyone could see what I see when they think about autism.