I’ve been keeping a secret.

I don’t like secrets.  Surprises, yes.  But not secrets.  Secrets feel untrustworthy and trust is important in any relationship, even that relationship between reader and writer.  Secrets feel like they’re something to be ashamed of, and what I’m about to share is definitely nothing to be ashamed of.  It’s time to be honest and speak up about what’s been going on in our family’s little world, because behind the pretty Instagram pictures and the positive Facebook updates and the joyful moments I share in my blog posts, all is not as well as it might seem.

Before I start it’s important to me that you know that this post has taken me a very long time to write.  It’s been going round in my head for months now and I got to the point of feeling like I would explode if I didn’t get it out.  Once I tentatively started typing it took me weeks to find the courage to actually write it all down and then press ‘publish’.  It’s scary.  And I firmly believe that we must do the things we’re scared of.  Deep down I know that sharing this is the right thing to do, even if my hands were shaking throughout the whole process of writing it.

I’m always hestitant to share deeply personal things such as what I’m about to write.  It makes me feel vulnerable and exposed and I don’t like that feeling.  I’m also extremely mindful of how my girls might feel if/when they read these posts one day when they’re older and as a result I put a huge amount of consideration into every single word that I type on this page.  I want them to know that I love them unconditionally, no matter what, always and forever.  And that none of what I’m about to write has ever or will ever change that.

Brene Brown, a woman I deeply admire, once wrote:

“I often wonder whether I should write these things.  After all, they’re not really my stories to tell.  But something calls me to write them and I realised it’s because it’s part of my story.  Being her Mum means that her story of childhood is my story of motherhood”

It was those few sentences that convinced me to share.  I remembered my ‘why’ for creating this space in the first place.  Purely and simply, it’s a space for me to tell our story.  All of it.  And if it helps a few other people along the way then that’s an added bonus.  This thing that I’m about to talk about has been such a big part of our story for so long now that it wouldn’t feel right or authentic to omit it.

So here it is.

In The Beginning

We are about to walk down an unknown path.  A path that I’m anticipating (rightly or wrongly) will likely be full of barriers and paperwork and time delays and battles.  But I’m ready.  It’s time.

I’ve known for months, years in fact, that there was something was a little bit different about my Mimi.  Recently it’s been getting more different.  Don’t get me wrong – different is good, and being different something I actively encourage in all three of my girls.  It’s just that this particular type of different is becoming harder to manage and is impacting on all of our daily lives in ways that mean all of us are struggling.

Perhaps I should start at the beginning…

When Ella, my eldest daughter, was born, she was really very poorly indeed (although I didn’t fully comprehend it at the time).  She had severe reflux, almost choked to death twice and wasn’t thriving – as a first time mama buried under the weight of post-natal depression I just thought it was normal and that I wasn’t doing a good enough job of looking after her to make her better.  I’ve written about it in a little bit more detail here if you want to know more.

When Ella was eight months old I discovered that I was pregnant with Mimi and I was utterly terrified.  Terrified that she would be poorly too. Terrified at how I would cope even if she was healthy because Ella was still so very ill.  I worried the whole way through my pregnancy.  And then Mimi arrived – ten days overdue – and she was the happiest and most easy-going baby ever, always ready with a dimpled smile whenever you looked at her.  I only managed to breastfeed her for six weeks (a huge regret of mine – I wish I’d been able to continue for longer but she needed more than I was able to give), but weaning was a dream.  There was no reflux, no projectile vomit, and she liked anything and everything I gave her to try.  She hit all her milestones and I often thought to myself “this is what its supposed to be like.  This is how it’s supposed to feel”.  I slowly relaxed into parenting, Ella gradually got better and although I had to go back to work far earlier than I wanted to because we desperately needed the money, and Mimi went to nursery from only a few months old (another regret), life felt a bit better.  As they both grew up it got busier of course – life with a toddler and a baby is never going to be easy – but we were happy.

Time went on.  When Mimi was 11 months old I found out I was pregnant with Lola.  She was born a month after Ella’s third birthday and our family was complete.

And them something, somewhere, shifted.

Back in May 2012, just as it all began…

The First Signs

I have a very clear memory of trying to get myself, Mimi (three years old by this point) and Lola (eighteen months old), ready to go and pick Ella up from Reception class at school.  It was an ordinary afternoon in late Spring, bright and clear, and we’d had a normal, enjoyable day of running errands and playing together.  And out of nowhere, Mimi flat out refused to leave the house to collect her sister.  She took her shoes off every time I put them on her and threw them at me violently, went stiff as a board every time I tried to put her in the double buggy we had and screamed so loudly that it left my ears ringing.  I’d never seen anything like this from her before and as I forced her into the buggy (as gently as I could) I felt myself getting increasingly worried and stressed about being late to collect Ella, my breath quickening as my chest tightened in panic and my eyes swimming with tears.

Eventually I ‘won’ the epic battle and Mimi screamed and fought against the buggy buckles all the way to school, her back arched in protest and her anger sounding out shrill and furious.  It continued whilst we waited in the playground, drawing curious looks from other Mums whilst I tried to console and calm her.  She screamed all the way home too, barely drawing breath, and it wasn’t until we were back inside the front door and I let her out of the buggy that she finally stopped.  I felt utterly exhausted and embarrassed.  This was nothing like the happy three year old I knew.  Eventually I put it down to a one-off tantrum and tried to forget about it.

Until the next time it happened.  And the next time.  And the next time…

These ‘tantrums’ have continued as Mimi has got older.  She is now ten years old and hasn’t ‘grown out of them’ as some people have suggested she would.  If anything, they’ve got worse: more intense and more frequent.  She throws things (the most recent object was a heavy, solid metal toilet roll holder – directly at me).  She hits and kicks and spits and fights and pushes.  She screams at us, turns her back on us, calls us “stupid”.  She runs away from us with no thought for her own or anyone else’s safety.  Tells us she hates us.  That she hates her life and always has.  That she doesn’t care about anything.  There is a lot of defiance and refusing to do what we ask her to do – often deliberately doing the opposite instead.  Her sisters are often the target too if we don’t intervene in time.

It’s like living with Jekyll and Hyde – you never know which version of her you’re going to get from one minute to the next, let alone one day to the next.

For a very, very long time I thought it was me.  My bad parenting.  My lack of control.  My limits in empathy and understanding and patience.  I genuinely believed that Mimi hated me and that it was all my fault, that I’d gone wrong with her somehow. I couldn’t understand why I couldn’t connect with her or make her happy again even though I work as a therapist in my day job and felt like I *should* be able to help her.

Until a few months ago when I randomly came across a blog called Steph’s Two Girls.  Steph’s youngest daughter – the same age as Mimi – has something called Pathological Demand Avoidance (PDA).  My curiosity awoken, I read a few posts, clicked through to the PDA Society website she linked to and promptly burst into tears.  The whole site was describing my Mimi and our family life in perfect detail.

Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism.  The central difficulty for people with PDA is their “anxiety-driven need to be in control and avoid other people’s demands and expectations, underpinned by an intolerance of uncertainty.”.  The more I read about it, the more it all made sense – Mimi’s behaviours, thoughts, feelings and how she is with us; the things we’ve been struggling with as a family; the dynamics and interactions between us all – it all fits perfectly with the profile of PDA.

Yes, I’m currently self-diagnosing her but it really has been immensely helpful to me to have an idea about what might be happening with our daughter.  Now that I understand more of what I think might be going on, I can see retrospectively all the little indicators that were there.  Which, if taken individually amount to nothing, but collectively paint a picture of a girl who has really been struggling for a long, long time.  I just didn’t join the dots or see it properly until now.  Now that I understand it all a little bit more I feel like I’m able to connect with her so much better, although we all still have a long way to go.  Ultimately, her behaviours are anxiety driven with a deep-rooted need to be in control.  They’re not ‘tantrums’, they’re meltdowns (which is actually something we started calling them long before I ever came across PDA).

Essentially, meltdowns are enormous panic attacks.  All the little demands that we place on her, plus her own anxieties and worries, build up over time and eventually she can’t contain them any longer and she has to let it all out.  She’s a bundle of nervous energy.  I’ve learned not to ask her constant questions about why she does these things – it makes her more anxious as she can’t process the questions and she doesn’t consciously know the answers.  She’s doing well at school (particularly in maths) but not quite so well as I know she’s capable of with her brilliantly out-of-the-box thinking, resulting in her believing she’s stupid (which just breaks my heart as she’s one of the brightest children I know in so many ways).  She has certain obsessive behaviours too – re-reading the same series of books over and over and over, watching the same TV series over and over and over, and wearing the same clothes over and over and over.  At first I just thought this was one of her quirks, and maybe it is, but it’s also part of the condition.

For years, no-one believed me.  Nobody believed that she did these things and that our life really was as difficult as I was making it out to be.  She’s absolutely fine at school (on the outside anyway, though on the inside I now know it’s a very different story, a turmoil of anxiety churning away inside of her that she keeps hidden until she gets home).  We’ve had three ‘family support workers’ over the last five years and the shame I felt at having to ask for help with my own daughter was indescribable – I felt like I wasn’t a good enough mother, that I should be able to do it on my own and that because I couldn’t I had somehow failed at my most important job.  With each successive person assigned to us there was a tiny improvement but as soon as we were discharged it went back to the way it had always been.  Even the school told us it was a “problem at home”, which, as you can imagine, was particularly unhelpful.  And yes, those were the exact words they used.

Being introverts, we tend to keep ourselves to ourselves and so friends and family didn’t really see any of the difficult stuff – they mostly saw her when she was on form and considered her behaviours to be nothing more than funny antics.  Mimi saved it all for when and where she felt the safest: at home behind closed doors.  But in the last couple of years it’s started happening more and more when we’re out and about too, which is particularly scary as I can never predict when it might happen and there are so many variables and elements beyond any of our control going on that it’s hard to keep her safe from getting hurt.  Supermarkets and shopping for clothes/shoes are a big anxiety trigger for her and it makes day to day life hard.

Travelling

Holidays are becoming increasingly tough.  Our annual trips to our happy place in Bude in Cornwall are now often interspersed with days where she refuses to leave the house.  On our break there earlier this year we went for a walk to see Hawker’s Hut and Mimi didn’t want to go.  We managed to get her there but ultimately there was no point.  She walked as far away from us as possible and sat on a gate whilst we explored as quickly as we could.  Nothing could move her.  I spent most of that afternoon in silent tears.

On our walk to the Hawker’s Hut Mimi stayed as far away from us as possible

Our holiday of a lifetime to Disney in Florida last year was magical in so many ways and we have hundreds of incredibly happy memories of our time there – meeting the characters, playing in the pool, being together as a family – and yet when I look through all the photographs I took I also remember the exact moments Mimi had a meltdown and how terrified I was that I’d lose her in the crowds as she was going through a ‘running off’ phase at that time.  Even our trip to Lake Maggiore in Italy last month was hard – her anxiety about being in the car multiplied tenfold and so we were limited as to where we could get to.  There was one particular day that we had to abandon our plans completely as she had a meltdown whilst we were out and I knew it wasn’t worth forcing her to go where I wanted to go.

At Epcot at Disney in Florida. This was a particularly hard day, though you’d never know it from looking at this photo.

Days out at home are now notoriously tricky, even if it’s something she really wants to do.  She worries so much about the journey to get there and back and what it might be like once we get there that eventually the overwhelm gets to her and she has a meltdown.  After she gets it out of her system she’s usually ok but it leaves us all completely exhausted and (for me at least) taints what would normally be a day full of fun and love and laughter with a slightly sad note and memories of how difficult it actually was.

We’re learning now that we have to weigh up whether the day trip we want to do or the holiday we want to go on is worth the trade-off of the anxiety that it will likely cause her and the fall-out that we will inevitably have to deal with at some point (either in the lead-up to the trip, during the trip itself or the day afterwards when she’s so exhausted from trying to hold it all together that she simply can’t do it any more).  Usually it IS worth it, which is why we keep on travelling despite the extra challenges that it often entails.  I’m gradually learning the distinction now and am starting to recognise when it’s better to surrender than force her to do something – I can’t have it my way all the time.  We compromise by trying to keep the days in between a big event as calm and non-demanding as possible.

A family selfie in Laveno in Italy. A relatively good day, though we did have to make some compromises on what we originally wanted to do.

The Impact On Us As A Family

I have to admit that I do feel jealous when I see other families out for the day, all their children behaving and having fun and being how they’re ‘supposed’ to be.  I know realistically that it’s not true all of the time – of course other children have difficult days and tired tantrums.  It’s just on a completely different level to what we find ourselves dealing with on a daily basis.  We have to put a lot of thought into the language we use with Mimi – choosing our words and tone of voice with a great deal of care and consideration (feeling like she’s being told off or criticised is also a major trigger for her).  It feels like we’re walking on eggshells al the time, not sure how she might respond and never knowing what mood she might wake up in.  It’s utterly exhausting, both mentally and physically.

Earlier on this year, I think it might have been Mother’s Day, my Mum and Stepdad witnessed a meltdown that lasted for over an hour whilst they were visiting for the day.  It was horrendous – one of the worst ones she’s had.  When they left to go home in the early evening it was with shocked faces and I think they finally understood what we’ve been going through all this time.

Of course all of this has a massive effect on her sisters.  Ella and Lola are beginning to understand a bit more now although they too are finding it hard to cope with the outbursts and upset and changes of plan when a meltdown happens.  I can see Ella getting increasingly stressed at her sister’s behaviour.  Ella likes to feel in control of things and her sister’s behaviour is way beyond her control.  She tries to be extra helpful and well-behaved to make life easier for me and if she’s in the right frame of mind she’s actually brilliant at helping Mimi get out of a meltdown before it fully kicks in by gently cajoling her and playing with her and giving her the quality time that Mimi’s love language requires.  It’s wonderful to watch when it works.  And sometimes, because she’s human like the rest of us and still only 11 years old, Ella can’t take it any more and she simply has to let out her frustrations too, quite understandably.

Ella is fantastic with Mimi and really helps her a lot

Lola, Mimi’s little sister, is starting to copy some of Mimi’s behaviours.  I don’t think she’s doing it consciously, she just maybe recognises it as a way of getting what she wants.  But even she, at eight years old, is learning when to keep out of Mimi’s way and leave her alone.

I feel sad that their relationships are affected in this way – it’s no-one’s fault, it’s just the way things are. I know I probably unintentionally put a fair bit of pressure on both Ella and Lola to ‘be ok’ whilst I try to manage Mimi’s feelings and that’s not fair – they’re allowed to be themselves too and I know I have to dedicate time and attention to them as individuals as well.  Meeting everyone’s needs on a daily basis is tough.

Lola and Mimi are close too – they’re always giggling together

The Coke Bottle

I’ve not used the term ‘PDA’ with Ella yet, though I’ve explained it through an analogy that she seemed to understand. I use this explanation quite a lot actually – it seems that it helps most people get some kind of an idea about what’s going on.

I explained that Mimi is a bit like a bottle of Coke.  Every demand that is placed on her is like giving the Coke bottle a little shake, making her a bit fizzier inside.  Think about the demands that Mimi will receive on a daily basis, taking a typical school day as an example.  Time to wake up; time to get dressed; brush your hair; choose some breakfast; pack your bag; brush your teeth; get your shoes on; it’s time to leave.  Each one is a shake of the Coke bottle.  And there are so many variables within those demands: maybe she hasn’t slept very well; perhaps her favourite school top hasn’t been ironed; her hair might be extra knotty; there isn’t the cereal that she wants for breakfast because it ran out yesterday and I haven’t been shopping yet to buy more; she can’t find the toothpaste; she’s struggling with tying her shoelaces; her school diary is missing; she’s suddenly remembered that she hasn’t done her homework… Each one yet another shake of the Coke bottle.

Then there are all the demands of school itself: sit still; be quiet; do your work; time for assembly. Plus all the social anxieties of the playground – if her best friend isn’t at school that day for example, or if one of the boys is mean to her about girls playing football – AND having to battle with learning and understanding new things in her lessons when she doesn’t process information in quite the same way.  All more shakes of the Coke bottle.  It’s no wonder that she often explodes on the way home from school or once we get into the safety of home.

All that pressure, all that anxiety, all that fizz going on inside her that she’s had to keep a lid on all day.  It just gets too much and has to be released and it can be anything at all that sets her off, seemingly without warning – that one final shake of the Coke bottle.  I do try and keep all of this in mind but sometimes it’s hard – I look forward all day to having my girls home again after school and then when inevitably a meltdown happens I sometimes forget about all the stuff that’s actually led up to it and think it’s my fault, taking it personally when in fact there’s no need to at all.

What Next?

Now that I know I’m not going crazy and that there is something more, something deeper, going on underneath the surface, I’m about to head down the path of attempting to get a formal diagnosis.  I’ve put it off for so long, not wanting to ‘label’ Mimi because I questioned myself as to what good it would actually do.  After all, this isn’t who she is, it’s something that she has and does.  It’s not her identity, it’s behaviours that she does to help her manage the feelings she has.  I don’t ever want her to feel like there’s something ‘wrong’ with her (although sadly I think I might be too late with that particular belief already).  She needs support from us to help her manage her feelings, and we as parents need support in turn so that we know best how to support her.  And to access that support we need a label – the healthcare system likes to organise people into labels so it knows what support to offer.

We need that support so that we can help her manage her thoughts and feelings, so we can be better parents to all of our girls, so we can keep our marriage going (because obviously that’s been hugely affected through all of this and quite honestly I sometimes wonder how on earth we’re still together through it all).

It’s been tough on us as a couple. Our marriage is certainly being put to the test. It’s a good job our love for each other is so strong otherwise I think we’d have broken by now.

None of this is Mimi’s fault.  Or mine.  Or anyone else’s.  I’ve always called her my ‘wild one’ and we used to joke about it being middle child syndrome.  Now we know better.  She is who she is, she struggles with some stuff (like all of us do) and we’re learning to accept how that is likely to affect us over the coming years and how we’re going to need to adapt in order to help her with this extreme anxiety and need for control.  She’s not herself when she’s doing it, it’s just her fight or flight response kicking in (sometimes both at the same time) – it’s not bad behaviour or bad parenting or letting her ‘get away with it’.  It’s not my Mimi.  It’s just when the everyday demands get too much that the PDA flares up and she switches into something else.  When she is herself, the real Mimi, and the PDA is dormant because she’s feeling safe and comfortable and there are no demands being placed on her, she’s amazing.

She’s awesome.  She’s funny and quirky and full of energy.  She’s great conversation, immense fun to be around and she makes us laugh uncontrollably on a daily basis.  She can be incredibly kind and thoughtful and loving.  She is imaginative and inventive and has a unique way of thinking that means that her problem-solving skills are top-notch.  When she smiles, it lights up the whole room.

I truly believe that we get the children we’re given because we’re meant to learn as much from them as they do from us.  I’m not sure what my lesson is yet.  So far it seems to be one of patience.  And learning that I need to surrender the control sometimes.  She’s my mini-me and my opposite, and a gift in so many different ways.  I’m incredibly grateful to have her in my life – I’d be lost without her.

This quote has helped me beyond measure as I’ve started to walk down this new path with her:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that they are exactly the person they are supposed to be.  And that (if you are lucky) they might just be the teacher that turns you into the person you’re supposed to be” ~ The Water Giver

A very, very wise man once said to me (in reference to my girls): “They’re not who they’re going to be yet”, and I keep that in mind on a daily basis too, wholeheartedly agreeing with him.  None of us are who we’re going to be yet, we’re all a constant work in progress, continually stepping forwards into becoming more of ourselves.

Mimi is going to change the world one day.  I know she will.  The world, our world, is a better place for her being in it.