Princess Diana: Finding a Voice

 

Diana

Having watched the controversial TV program this week Diana in Her Own Words, so much of the content resonated with me.

As much as I have wanted to talk, of late, about what has happened I know that I can’t.  The time will come to put it into words our experiences, but we need time to process and to heal.

Just like Diana, I have discovered hidden systems and agendas, plotting, corruption and lies.  All from professionals who are put in place to protect families like ours.  In fact it started at the beginning and yet I was none the wiser – oblivious to the inappropriate conversations that were to shape our future.  This just manifested itself into a confidence-stripping exercise, robbing any self-belief I had about parenting.  More importantly, I was unable to hear my daughter’s pleas of distress.

As the last school days came to a close in July, my social media was jammed with images and happy memories from parents of present givings for teachers, sports days and annual celebrations.

My vacant posts on social media was a true reflection of how I was feeling: empty, shaken and uncertain of the future.  My daughter had a goodbye present to give to her beloved teacher, only we were powerless to let her do it.  Her eyes welled up and as she shed hot, cathartic tears,  I truly saw the damage, right there, the past two years had done to her.

We desperately wanted to take part in the end of year festivities just like everybody else.  Instead, we were a silent story few knew anything about and we were facing a fight with a dark, omnipresent system.

As my friends took pictures of their beautiful infants reaching appropriate milestones, I was sat at the laptop, writing a letter to the Director of Children’s Services to highlight the pure neglect and corruption I had experienced.  My complaint was quashed without any further investigation and my points ignored.

The continual rejection from people I have begged for help has damaged me, just like our tragic Princess Diana.

Yet that program uplifted me in some strange, spiritual way.  Despite all she had been through, she still found the strength to help others and to find her voice.  It was that strength that unnerved those around her.  What was she going to do with it?

Sometimes I sense those around me are thinking the same thing, what is The Mum going to do with hers?

They have attempted to dismantle me, re-write the history of our schooling and care experiences, as well as withholding key information I have requested.  The isolation grinds me down but I will still keep on fighting.

My love for my daughter gives me the strength to continue.

There is another reason why I will continue to keep making a noise.

My daughter is not the only one.  We are not the only family affected.  There are other distressed children in our school, in our area, in all areas who are left isolated and misunderstood.

I will continue to highlight all of the failures that we have experienced because I know there are so many other children in the system whose needs are not being met.  I want to  enable their voice too.  I want to reach out to their parents and reassure them, empower them and connect with them.

Diana found helping others a coping mechanism for the melancholy she was experiencing.

I can relate to that.

I think this need to help others just about keeps my head above water.

You can’t begin to describe how it feels, for example, when you find out that a member of teaching staff was advising parents to complain about your child so they ‘could get rid of her’.  The injustice, the despair, the anger.  The emotion is too raw right now to talk about.

Oppression occurs in many areas of society, Princess Diana was a public example of how it affects those we assume are more fortunate.

It is over twenty years since those tapes were made and yet they transcend time.  They speak even louder in volume than the day they were made.  Diana found her voice and used it carefully.  I will endeavour to do the same.

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The Professionals

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If blogging be the food of love, play on.

I’m surprised, that at the end of a very stressful day, I should feel the need to write.  I know that I should switch off, relax, unwind – however you want to put it.  So, here I am, wounded and confused, but with words engulfing my brain.  I have to put them down.  I am the puppeteer and they are my strings.

So here is a subject I feel that I am becoming quite accomplished to talk about and that is the world of … The Professionals.

In my experience of the underworld that is unfortunately SEN, there are professionals that I have come across and they may be clumped into two categories:

  • Professionals who tick boxes
  • Professionals who exhibit passion

The professionals who are passionate, well they push the boundaries and arm you full of knowledge that the professionals who tick boxes wish you didn’t know.

They are a breadth of fresh air and invigorate your step.  They pick you up and keep you focussed and they remind you of the bigger picture when actually you feel like you have absolutely nothing left to give.  They arm you with the power in order to make your child not just survive, but to flourish.  There is no surface politeness or reading between the lines, their professionalism shines through.

The ones proficient with passion are (I assure you) very few and far between.  But, by god, when you meet one you know about it.  They are adept at being professional – they are skilled, masterful, polished and most of all full of expertise.

And then, there are those professionals out there who… just…tick…the…boxes.

Yawn.

I’m afraid these are on a much larger scale and are best described as being infectious.

These ones follow their guidelines, they are systematic, rigid and lack the heart that is needed to drive their engines.  These professionals are quite at home at making a square peg fit in a round hole.  They even have the terminology to make that happen.  They purport to be doing the right thing, but is that actually the case?  I’ll let you make your own decision on that.

Sometimes it can work in their favour and the parents they encounter drop into submissive mode, sadly more often than not due to a parent’s level of class and/or education.  But at what cost?  I would argue at the detriment to a helpless child’s hopes, fears and well being as well as evolving into adults who simply don’t fit in.

It is important to note that there may be a bit of a grey area in between.

There are professionals who DO tick boxes and they DO avoid your questions and they DO leave you on a limb because in fact, deep down inside they may have some passion.  Only this passion has been categorically dampened out by a system that doesn’t actually work.  They know it, but feel powerless to change it.

It is these professionals who I appeal to.

Do they dare to be different and follow their instincts?  Can they augment change?  Can they take themselves out of the grey area and be proud to say they are a professional with passion?

I know which category I’d prefer to fall under.

Yes, blogging may be my only food of love at the moment, particularly when I have been stripped of everything else, but I know I still have strength and drive.  I know that, somewhere, within my psyche that I am proud to be a mum who is ‘A professional with passion.’

What is your favourite superhero?

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A superhero (sometimes rendered super-hero or super hero) is a type of heroic stock character who possesses supernatural or superhuman powers and who is dedicated to fighting crime, protecting the public, and usually battling supervillains.   Wikipedia

“What is your favourite superhero?”

Those were the words uttered from a seven year old boy recently and taken in context they were loaded with so much more knowledge for his years then I could ever begin to describe.

His name is Harry.

I met Harry when he was a toddler after making friends with his mum at playgroup.  Since those early days his mum and I have become firm friends and we maintain playdates not simply for the children’s needs but out of our growing friendship.

His mum has attempted to talk to her children about my PDA daughter in the past.  You know, she may do this or she may react a bit differently, but that’s ok.  She doesn’t chose to do it like that and we have to just move on because inside she is still that lovely little girl that you both know.

They both have nodded their heads and show some childlike understanding before running off to play princesses and superheroes in varying directions.

It may seem unbelievable, particularly when she is currently under investigation for a permanent school exclusion, that until last week they had never seen PDA child lose control.  The red mist so to speak.

As many other PDA families will describe she keeps a lid on it.  She loves this family so much and has been nurtured by them, that not only does she not want them to know her Jekyll side but she is far more relaxed that she is able to maintain the Hyde personality.

An incident occurred last week and the mask was forced to slide, unveiling all of her insecurities.

The four children were playing in the paddling pool and screaming with laughter, it was become noisy and I could anticipate something about to happen.  All of a sudden, my two children collided and PDA child went into an unprecedented attack.  Her friends shouted for her to stop hitting her sister and then they became targets too.  Suddenly my voice was screaming to stop and I have children being attacked left, right and centre.

I managed to pull her out, now with my entire outfit dripping wet and without engaging my brain I sternly said “right that’s it, we are going home!”

Cue further eruptions now by both inconsolable children and a baby on a picnic blanket who had no understanding of the commotion, but who seemed to want to get in on the act.

My friend started to take control of the situation and spoke in very calming tones after my umpteenth apology of I’m so sorry and then wrapped one of my children on her lap.  Her two children were still dripping in the pool looking confused at the ferocity of what had just taken place.

This special friend started using PDA techniques – the type of thing that I should have been doing if my emotions had not run away with me.

Then Harry climbed out, his goggles imprinted still on his forehead, and quietly said to PDA child “what is your favourite superhero?”

She told him it was Spiderman.  He politely offered would she like to go back inside to play it on his computer.  The situation was beginning to calm again so they dried off, chattering away as they engaged their talk on goodies, baddies and super strengths.

That night Harry talked to his mum.

He said about the superhero choice PDA child had made and in retrospect it was the wrong person to pick, she shouldn’t be Spiderman and that she should’ve said the Incredible Hulk.

“The Hulk gets angry even though he doesn’t mean to, but he is still a good guy.”

Firstly, we were both so impressed by Harry’s maturity earlier on when he used the art of distraction to get the situation under control.  Secondly, he had reflected on the day’s events and had evaluated his own psychiatric report.  He felt no need to reinforce the message that she had followed the wrong actions, but to empathise with her bodily response to danger.

Now, if only Harry was a bit older and could path the way in his leadership skills.  Forget EHCP’s, TAF’s, Child in Need meetings and all the rest of it.  Forget the paediatric assessments or the social workers invading the house – somebody just needs to speak to Harry.  He doesn’t need to divert blame or add in the jargon, he simply understands my autistic child better than anyone.

We came away from that play date having had a positive experience despite the challenges we had faced.

Harry is a superhero to me.

Not only can he tackle crime, protect the public and eradicate the meanies but he also has supernatural powers: his intelligence far outweighs his chronological age.

I only wish he could be my partner in crime when I have to attend the next reintegration meeting at school – maybe he could shed some light on how school can educationally handle his superhero ally the Incredible Hulk?

They tried to make her go to rehab… she says no, no, no

She needed help and fast, so I had no other choice but to take her to A & E.

It feels so bitter for me, as this same time period six years ago I was at this very hospital with PDA daughter as she entered the world.  It was just her and me and she was cradled up, looking perfect.  The only worry I had back then was if I was feeding her correctly or if I could move away from her hospital crib to go to the toilet.  It was all so new and fresh and I was on cloud nine.  She was tiny and untouched by this over powering world.

But this time we are here on terms I would never have deemed possible.

You think ok of the ‘what if’s’ when they are born.  What if they don’t put on weight?  What if I dropped my baby accidentally, what if I lost concentration?  What would happen if they got sick?  What if somebody stole my baby?  What if, what if, what if!

Never once did I think to myself what if she had a disability so bad that it would riddle her mental health, so much so that she would be admitted to hospital for not only her safety but the safety of those closest around her?  Or that she would be assessed and deemed high risk and have management plans to deal with her unpredictable state of mind.  These are concepts completely foreign to me and things that I have to learn to live with.

I look at her right now in her hospital bed so peaceful and serene, so in touch with her surroundings.  It feels like we have been on a roller coaster and it has somehow paused for just a moment.  Being in this bubble has restored some inner calm, but we both know it’s only a temporary solution.  We need to still go back out again into the big bad world and to face being warriors again.

Did it have to come to this?

Why did nobody listen to me from the beginning?

I’m so mixed up right now.  I feel so angry and frustrated at a system and a world that has contributed to both of our demises.

I’m jealous of my own life I had before; of the freedom that has disappeared and the prisoner I’ve become.

But most of all, I’m sad.  Broken by the child I witness in so much pain and distress.

Friends and family keep asking if I’m ok – they fear that I’m falling shortly behind PDA child and I’m swiftly on the edge.  On the day I took her to A & E my own mum looked at me frantically and I think she was concerned at that moment that I was not capable of looking after myself, let alone three small infants.  I had stopped still, unable to carry on, quietly in my own solitude as the chaos continued to spin around me.

My mum told me there and then to make a call to cancel an upcoming TAF meeting – she felt it would be the final straw to send me over.  Ironic really, as the team around a family should make things feel better and not frustrate or isolate us further.

The continual fight when you feel trapped in a corner is contributing to my own destruction.  I’m not saying I don’t have fight, or that I don’t have spirit, but when you are forced into a defensive mode most of the time it can send anyone over the edge.

More importantly, it’s zapping me of valuable energy sources that are already on the brink of depletion from parenting at the extreme.  A system around me should be beneficial and not contributing to the problem.

Forgetting my own need for tranquility, what actually sent her over the edge?  How did we enter the crisis point?  In actual fact, it has just been a steady incline of events which culminated recently by her telling us, “I want to die.”

She was still aged five.

She actively tried to pursue this desire.  At first, she tried to throw herself out of a window.  It had safety locks on so this didn’t work.  She then slapped herself around the face and hit her head against the wall and when that all failed she hung on the banister to fall down the stairs.  She said I shouldn’t have born her with this brain – it’s all my fault.  Finally, she picked up a butter knife and started making marks on her arms.

All of this was being witnessed by two small cousins and a four year old sister, the latter of which was panic stricken and crying “mummy, I don’t want my sister to die!”

They are affected, we as parents are affected, her grandparents are affected.

That night she cried in bed that she didn’t want to go back to school and here was my major mistake – I carried on sending her into an environment that she is unable to fit into.  So she school refused and when I finally coaxed her into the grounds, she absconded.  And what is even more unbelievable is that I still have a fight on my hands to find her an appropriate placement.  Is not acting upon suicidal thoughts enough evidence for the local authority?!?

On the day we came to hospital, I was at my wit’s end.  I was unable to manoeuvre around incidents and navigate the realm of our delicate ship.  Instead, we were all sinking and I was powerless to keep anyone afloat.  We needed medical intervention and fast.

When you have a child who is unable to smile anymore, who punches and kicks at anyone, or screams at a baby sibling as soon as they murmur, violently trying to attack them with no obvious trigger, you know that things can’t carry on.   When you have pleaded to every service possible and nobody listens.  When you are crying silently inside, please help me.  When you want to give up, but can’t.  When you dream of running away as far as possible, but you can’t.  When you feel trapped in your own mental prison just as much as your child is in theirs.

It was time to say enough is enough, we can’t do this alone anymore.  We have tried our best as a family, but the what if’s have become too much of a reality.

It’s just till these tears have dried, they tried to make me go to rehab, I said no, no, no.

Yes, I been black.

But when I come back, you’ll know, know, know.

Who needs it most?  Mummy says we need to go to rehab…I don’t know, know, know.

Friends, Glorious, Friends!

Friends, glorious, friends! What is there more handsome?

I have something very much in common with my PDA daughter and that is I am a social butterfly.  We feed from the same flower nectar and rely on the same stimuli.

I was about to say that with her presentation, she sabotages those relationships by her inability to control her emotions.

Only, it’s not purely reflective of having PDA, it is a result of being a human in distress.

I crave social interaction, I don’t know when to stop talking.  And yet, in my most pivotal time of need, I push those I need the most away.  Being in solitude seems to me often the only way to cope.  But sometimes, I need to listen and just let people in.

I have friends who have been my closest allies since school.  Friends I have shared my growing up days with, friends I have holidayed with, friends I have smiled with and friends I have cried with.  Friends who beg for me to let them help and friends who turn up to catch up with a glass of wine or two!

I have friends from my days at uni who are always there to offer some support, a kind word or two, or just a musical number to sing along to.  It’s lucky that, with our subject area, that we all enjoy a musical!

It is with this introduction that I start my blog today.

I am lucky.  I have some lovely friends.  Too many to mention actually, but today I was shown true kindness from ones I have spent a long time growing up with.

These friends turned up today, with cakes and bubbles, as promised as a belated treat for my birthday.  This is not something we even celebrate each year, but they decided that as I was unable to come along to social events, then they would bring the fancies to me.  And of course they did that, in style.  Accompanied with hampers of treats, flowers and smiles galore.  As one lovely friend text, “when Mohammed can’t go to the mountain!” so they brought all of their kindness, compassion and generosity to me.

It was lucky that they shared dramatic interests and they could relish in the current ‘fascination’ we have in our PDA household – the film Oliver.

My lovely friends totally engaged with the girls and immersed themselves into the world of Oliver Twist.  We sang through every musical number that appears in the film and one of these special friends even enticed PDA child by playing ‘pick a pocket’ games.  These are special people, who can see past the controlling behaviours, to discover the quirky little artful dodger that is my PDA girl.  No judging, no pieces of parenting of advice, just smiles.  And in the mean time, this gave way to lots of fun, laughter and glasses of prosecco!

Other birthdays have been and gone without much fuss and I’ve been fine with that. You don’t really expect too much when you’re an adult.

This year was different for two very important reasons:

  1. On my actual birthday my daughter had one of the worst overloads that I have ever seen and I was called in to school to remove her from the premises.    The first words she whispered to me was, “I’ve ruined your birthday,” and she was given a fixed term exclusion until the following week.  It was a bittersweet moment, as her younger sister in nursery came home ecstatic that she had been awarded a bronze award from the headteacher for being in the pot of gold so many times.  I wasn’t able to enjoy her happiness as my eldest uttered the words, “It’s not fair, I want to get one of those.  I just wish I could be good.”
  2. I was amazed by the amount of gestures I was shown from all of my friends.  It doesn’t have to be lavish or elaborate, but the effort of just being there for me is really enough – in other words, I felt loved.

I am now like a broken record, with the lyrics of Oliver, still doing loops in my brain.  Friends, glorious, friends!  Still worth a King’s ransom.  What is it we dream about?  What brings on a sigh?  Piled peaches and cream about… six feet high!

I have an abundance of friends, some very important ones, some I don’t see regularly, but when I do we fit back together like glue.

Just like my daughter I sabotage my friendships, I’m indebted that these people haven’t given up on me.  They are patient and understanding, they compromise and offer comfort when I’m at my lowest ebb.  I have been there for each of them as a shoulder to cry on, why do I find it so hard to ask the same?  These people try to help me and I reject their offers.

I just want to say to all of these friends thank you for understanding, thank you for being patient and thanks for taking things into your own hands and making things happen.  I don’t know how I would have coped without the strong network of people around me.

And, please don’t give up on us!  We might not see you as frequent as we would like, but you are our nectar and we feed from you.  We are both butterflies, we need these important people around us to feel accepted, to flutter away our painful times.

Now, if only every parent could have friends that have drama degrees, wouldn’t life be so rosy?

The Woman, the Girl and the Lost Smile

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She sits, peering at herself in the car mirror, locked in her own thoughts.  She grimaces and stretches her mouth, trying to work out how to smile.

It’s a strange concept, but how do you naturally just smile?

She can do it, I’m not suggesting that she can’t, but it’s only when it happens spontaneously.  Recalling from muscle memory is a different process.  She opens her mouth and studies it with every piece of concentration her body can forfeit.  Her lips wobble and she struggles to express her emotions.

Her brain tells her the message just smile.

A smile works a thousand wonders, it connects her to the rest of humanity.  A simple concept that she just cannot do.

How many times when she is having a photo taken do we say ‘just smile’.  Say cheese!  Her teeth chatter and her eyes twitch with pain, “how long do I have to paste this on my face for?”  Another demand that is forced and feels alien to her.

Why, as a parent, do I feel the need to capture a moment that is not really existing?  Come on my darling, pretend you are having fun.  Let’s show everyone we fit in.  Let’s conceal the distress you really feel.  In other words stop being who you really are!

I am watching her in the car wing mirror and she preoccupies herself with this game repetitively for the entire journey home.  She gets angry with herself and lashes out at me as we get out of the car having reached our final destination.

I smile at her reassuringly and stroke her back where she likes to be tickled.  I wonder if that rubs it in further, here is mummy with a smug smile, adding to her failure to comply with a simple social conformity.  She slaps me in the face and the sting lingers, I say ‘ouch’ and she laughs at me.  The laughter hurts more than the assault.  My face crumbles and she throws herself around me, telling me she loves me, that she is so, so sorry.

I begin to daydream and reflect over the past.  I can see the words in her early years report clear in my mind, ‘a child who rarely smiles’.  I start to think about the things that make her happy, about the slapstick humour that makes her belly laugh so loud and the impromptu silly dancing we do around the living room.  I picture her smile and it is the most beautiful thing I can describe.  It tinges my thoughts with sadness at the fact that she must feel so unhappy so much of the time.

I have to snap out of it and think some happy thoughts for else it consumes me.  I begin to realise that I become so bogged down by behaviour daily that I forget to smile myself.  She looks to me for guidance and I fail at the first hurdle.  There was a time before she started school when I used to enjoy doing everything with her.  Play dates, baby groups, holidays, first trips to the swimming pool or the library.  Holding her hand when she took her first few steps or singing nursery rhymes over and over recording it on my phone, desperate to not miss a thing.

How did I get so trapped and lose sight of enjoying the simple things with her?  Experiencing life together like we did before.  If I think of doing any of these things now then I talk myself out of them.  Better not, maybe another time.

Why can’t I just enjoy her now?  What’s stopping me?  She still laughs, she still smiles (when it happens naturally!)

It’s the violent meltdowns that I can’t control that have taken their grip on me.  I have lost the ability to feel and in the process of that I have ignored my own ability to smile.  I’ve forgotten to relish in the milestones like I used to love to do.  She’s still the same person, it’s me that’s changed.

I need to enjoy being with her again and not being consumed by the flash points which happen in the day.  The emotional overloads that do not stop her being my funny, witty, artistic little girl. They will affect me, they shouldn’t control me.  Life goes on.

I’m going to leave you with the lyrics of the song Smile and hope that to anyone reading this that they can find the energy to smile again, just like I intend to do:

Smile though your heart is aching

Smile even though it’s breaking.

When there are clouds in the sky

you’ll get by.

If you smile through your fear and sorrow

Smile and maybe tomorrow

You’ll see the sun come shining through

For you.

Light up your face with gladness,

Hide every trace of sadness.

Although a tear may be ever so near

That’s the time you must keep on trying

Smile, what’s the use of crying.

You’ll find that life is still worthwhile,

If you just smile.

Warrior

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I’m strong like a warrior.  I can fight like a warrior.

I’m protected by a shield of professionals around me – who meet and collate information to make sure our needs are met.  They have the hard task to integrate our child into a mainstream setting with all the challenges that come with it.  And those challenges are magnified by unknown sources around us.  Our strongest battle always reverts back to educational handling of a condition few people know anything about.

I did the school run yesterday having woken up on a relatively good morning.  Here was my first mistake: I was relaxed and behaving like a normal mum.  I didn’t have my armour on and my emotions were exposed just enough to send me over the edge.

Yesterday I smiled and passed exchanges with parents en route.  It had been a relatively good start to the day.

Then I found out something that sent me into an unprecedented state of panic.

A group of parents had used an online forum to exchange views and versions of behavioural incidents that had happened at school involving my child.  Not only did they debate what could be ‘wrong’ with her but assumed that maybe she had ADHD or was it Autism?  Or maybe it was just down to the parent that they had seen on the playground who had no control of the child?  So some parents asked their children to recall the incidents in the day at school and the name was then dropped of the child who had done it.  Yes, my child.

Parents had been shocked and angered by the severity of the incident forms that had come home and needed to vent.  I had felt the same thing too – in fact I broke down in tears about it only nobody knew about that.

I had called the school and discussed that these were written with such detail without further support which would ‘typecast’ us further into a bad bracket.  We needed work on it and suddenly my worst fears had been realised.  Before this I had been desperately approaching parents on the playground in order to explain further and that I was dealing with it at home.  I felt like a person campaigning to explain, to be understood, to not be judged.  I just didn’t get to these parents in time.

If I didn’t care or was a bad parent then maybe it would have been easier because I could have just carried on.  But I couldn’t.  I would never condone violence or accept my child to hurt others.  In fact, that is why I never let her out of my sight.  I am run ragged always watching to protect not only my daughter but others she comes into contact with.

I think I hit rock bottom yesterday and I got scared.  I lost all control.  I felt so angered, saddened and frustrated that I lost it in the street.

I came home from the school and began screaming, crying, grunting and kicking the fence.  I became feral uttering sounds; it was the last straw to send me tumbling over.  My eyesight was hazy and I was unaware of onlookers.  My dad found me and put his arms around me, picked me up and ushered me to the car.  He used calming tones to reassure me things would be ok.  I lost sense of reality.  I have never experienced something like this before.

My poor father, with tears in his weary eyes (who has been concerned lately about my fragile mind) told me to use this to my benefit, “your pen is your sword.”

He was right.

In that forum somebody had stepped up and put the gossip to a halt.  That parent referred the group to my blog and explained the condition to the best of her ability.  It shed some light on the situation.  These words on these pages paint a different story.  One of tragic sadness, one of desperation, one of what life can really be like with a hidden disability.

It may also highlight ‘that’ child who has been so fraught with anxiety in the past that she was unable to go to the toilet for days because her whole body shut down and she could not follow daily tasks.  A beautiful child who cannot control a condition she has and who wishes she had a different brain.  And of a mum who cannot guarantee that her daughter will be able to live independently as she grows into adulthood.  If they had of asked me in the playground then I could have told them about that.  All of my sadness and of my grief of having a child who is not just like theirs, but of a daughter who I am often very proud of for overcoming obstacles daily.  I want to shout from the houses that she can go to the toilet now – what an achievement!  My estimations have changed, I don’t care if she can’t read, I don’t mind if she is unable to do multiplications.  I simply want her to be able to integrate into society.

I am truly sorry that my daughter attacks, it is her response system.  It is not an excuse, but an explanation.  I am also embarrassed by my own performance in the street – my meltdown.  I can guarantee that my daughter feels a range of emotions about her own behavioural responses.

And here I am, writing another blog.  I am fractured, admittedly, but I’m not fully broken.  I will put my armour back on to fight another battle.  I cannot afford to be under attack.  I will use the cathartic route of writing as my weapon and to heal my tormented soul.

I’m strong like a warrior.  I can fight like a warrior.  I will write like a warrior.

How do you begin to tell a child they have Autism?

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It’s a big question and one that will bring with it a huge debate.  I believe that there really isn’t a cohesive answer to this question, it’s like asking how long is a piece of string.  After all, there is no set time or a meticulous plan to follow, predetermined in a parenting manual before we start having children.  It simply may just be when the time feels right.

It is from this viewpoint that I approached the subject with my daughter.  She has asked many questions for so long that it was a relief to explain something to her.   These are a few questions that have stuck in my mind:

Why am I like this?  

Why do I hurt people?  

Why was I born beautiful and then I ‘growed’ up ugly?  

What will happen to me when I get older?  

What will happen when I’m a mummy?    

Will the police come and throw me in the jail with all the burglars?

I can remember a key moment when she identified in her self that she looked at things differently.

It was a day I when I took the children to the Science Museum – something she had been extremely excited about doing.  Yet, the day arrived and she started to get twitchy.  The entire train journey she was quiet and on edge.  We began looking around the museum and she started to snarl at people near her, then proceed to glare at them angrily.   After a while I decided to boycott the museum and get a quiet coffee somewhere – I was aware she was getting distressed.

As we were queuing she was still moaning about why other people had to be in front of her.  A man must have felt sorry for us and gave us his place, he said it was too long waiting with small children.  I was very thankful to the man and my daughter then proceeded to tell him her name and the whole of our family, where she had been, what she was doing next.  She acted like a mini adult and asked him would he like our place back in front of the queue.  She whispered to me that he was kind.  He smiled and told her what a charming young lady she was.

We found a quiet spot and she asked me, Mummy, when I grow up will I not be mean to the people anymore?  Why don’t I like people?”

At the time she was obsessed that faces needed to be circular, not oval.  White, not black.  Straight hair, not curly.  Brown eyes, not blue (I was relieved by the last one, I was starting to worry Hitler may have been reincarnated!).  Able bodied, not visually disabled.  I’m aware as I’m writing this I couldn’t get any further away from being PC.  I hate to think what response must happen in her brain when she can’t fathom these differences.

Why did she not like people?  I was lost for words.  I cuddled her and offered her lots of reassurance that she would learn to cope around people as she got older.  That people were not mean.  And more importantly, that if we all look different it makes the world a better place – like all the colours make a beautiful rainbow.  It would be boring if we all looked the same and we wouldn’t be able to tell people apart.

It was the best I could offer her.  But I knew from that moment on that I needed to find a way to explain her different way of thinking.

Things have moved on since that day.  She is a year older (nearly six) and we have a diagnosis (of sorts!).  She is accepting and changing daily and to me she feels ready to gain some self-awareness.  I needed to answer the plague of questions that had been building up over time.

And then it happened.

One day my daughter picked up her toothbrush from the holder in the bathroom and asked me did I know how she knew it was hers.  I answered with the most obvious answer – hers is always the purple one.  She twisted it around and showed me the back of the head in comparison to the rest of the toothbrushes.  Hers was missing a tiny pattern that all of the rest of the toothbrushes had, but was barely visible to the eye.  I told her that her ability to notice the smallest details made her a genius and smothered her with a cuddle.

“See darling, you noticed that tiny, tiny detail on the toothbrush that nobody else noticed.  That is because your brain is clever.”  She beamed.  I’m walking on a tightrope here, but I’ve gone too far – there’s no way back without falling off.

“That’s because you have Autism.  It helps your brain notice things many of us don’t.  But sometimes it’s the reason you get angry too.”  She asked if she could look at her body book before bed and she went flying off.  She wanted to show me a picture of the brain and to teach me about it.  I allowed her to ‘steal’ the idea and pretend it was her own – if she had ownership of the concept then she was more likely to be open to learn.

I let the idea fester without mentioning it further – with a PDA child conversations have to be on their terms.  Then a few nights later she said the words, “Do Santa know I have Autism?”  Bingo, firstly she had remembered the word (something her auditory processing skills usually don’t allow), but secondly she was willing to re-open the subject.  I cuddled her and congratulated her on how clever she was that she had remembered the word, and yes, Santa would know she had Autism.  She smiled and I felt happy she had accepted her diagnosis at that point.  It didn’t bring about shame or fear, but a sense of her own identity.

For the first few weeks it was only mentioned if she brought it up first.  “Does Grandad know I have Autism?  Does the teacher that follows me know I have Autism?”  After some gentle reflecting, she began to tell people she trusted.  At school, she told the headmistress she had Autism, then her 1:1 and then bravely to some of her peers.  Slowly and steadily she is beginning to accept that her brain works differently.

This is still early days and we are only at the start of our journey.  It’s not a magic wand that I often wish I had.  We still have so many bad incidents and violent outbursts, some of which she screams at herself that she hates her brain, that she wants to get rid of it.  I can’t begin to understand what that must feel like.  What I can do is find creative ways to help her see some of the positives and that ultimately Autism will be intrinsically entwined into her core.  Invariably, it might often feel for the worse.  But sometimes with acceptance and knowledge it could be for the better.

I wonder what it must feel like as an adult who was robbed of this opportunity to understand their true self?

PDA Conference – 9th May 2017

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Families in Focus are a local support group, running parenting courses and drop in sessions for families parenting a child with additional needs.  It is run by Francine Swaby and Lesley Chance and they have a wealth of knowledge in the SEN area.  At the moment they run sessions all over Hertfordshire and are now launching two new groups in Bedfordshire.

I have been attending this group and have met some fantastic parents along the journey.  We have shared information, shed tears and most of all laughed together.  It is a warm and friendly environment – a group that I would encourage other parents to join.  I am also a member of the South Bucks PDA Support Group which has been another source of support.  I would recommend to any parent out there to find a local support group as it is reassuring to feel that you are not alone.  Together, as parents we are stronger as a collective.

Francine and Lesley at Families in Focus have been at the forefront with wanting Hertfordshire to recognise PDA as a diagnostic profile, which has been amazing for many parents like me.  They are open, kind and generous in their ongoing support to all parents.  I would personally like to thank them for all of their work that they do.  I think they are truly inspirational in their vision to support parents to help us along our journey.

This PDA conference has had an overwhelming response and we are all looking forward to it greatly.

Please take a look at their website http://www.familiesinfocus.co.uk for further information on drop-in sessions and courses that they run.

 

The Smartosaurus VS The Panicosaurus

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“Mummy, at the disco it was so loud that it made my heart beat really fast and it felt like it was dancing.”

First things first, I can’t believe those words came from a five year old.  I know for certain I wouldn’t have been so attuned with my bodily sensations at the same age.

Secondly, within that sentence is an ability to teach emotional intelligence.  This is something that has been discussed as virtually impossible in the past due to the inability to get through the ‘red mist’.  However, I have always ascertained that at home she displays such understanding, unfortunately at school her anxiety was always on the brim so they rarely saw it.  However, we have had some flickers of hope from two important breakthroughs, so here goes.

My daughter is finally back in full time education with the support of a 1:1 TA (note for Mummy … AND BREATHE!).  This person has a willingness to be flexible and creative as well as an interest to learn more about PDA.  This has resulted in a far less anxious child at school and at times less explosive at home.  Even though on many occasions she rejects the help by informing the headteacher “Can you just tell her to stop following me?!” she quickly glances around to check the TA is still there.  Her usual tactics of avoidance would usually stop a professional from engaging any further, but what she is learning is that this person is STILL here.  This gives her a vote of confidence, the teacher must actually like her. This reassurance is starting to finally allow us to unpick some of the unwanted response systems she has built up.  The ‘teacher that follows me’ is someone certain in a very uncertain world.

The second change was learning she has Autism.  She has asked me questions for so long that I was unsure what to say.  At aged 4 she talked about having monsters in her head.

However, with a diagnosis I was able to follow my instincts and I found my right moment to tell her ‘you have autism’.  This is quite a lengthy subject, so I shall blog about it at another time.  The key part is that she is gaining some self-awareness.  She is beginning to learn that she is not ‘naughty’ but that she struggles to control her response system.  She has shared the information with some key people at school and has even asked her TA to tell the children about her having Autism.  Acceptance is key and the ability to find her own identity is something I believe will endeavour to prepare her through life.

Teaching her about why she has a fight or flight response system, we have revisited the book The Panicosaurus by K.I. Al-Ghani.

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The book teaches us about why we get anxiety and where it comes from using the perspective of a child:

“Deep inside everyone’s brain is a place called the amygdala.  A little dinosaur called the Panicosaurus lives in the amygdala.”

It talks about the Panicosuarus being needed in the cave man days, always on alert to fight away a sabre tooth tiger or to defend the cave from a hairy mammoth, but in present day it often lays dormant and plays tricks on our brains.

“Panicosaurus would help the caveman by getting his brain to tell his body to breathe faster, so that his heart would beat more quickly and pump extra oxygen to the muscles in his legs and arms.  This meant the caveman would be ready to run like the wind or fight for his life.”  

This is the sensation my daughter was describing at the disco when her heart beat so fast it felt like it was dancing.  Unfortunately, for many children on the spectrum, there is a correlation between having a dysfunctional amygdala, so in this case our Panicosaurus sends the child into overdrive unnessarily.

As the book teaches, this is where we need our superhero the Smartosaurus to step in.   The Smartosaurus is hidden in the part of the brain called the neocortex and tells us that the Panicosaurus is being mischievous.  There are techniques the child can use to help the Smartosaurus beat the Panicosaurus and are illustrated throughout the book.  My daughter uses it when she gets a bad thought in her brain (she is unable to articulate what the thought is), so she breathes out slowly mouthing the word “Pan-ic-o-saur-us!”  It seems to help regulate her breathing and the moment often passes.

A suggestion was given to me about giving my daughter a notebook where she could either write or draw her bad thoughts down.  So one day she picked it up to use it, and this is what she put:

‘My dolly Panicosaurus, you are ugly!’  By insulting it and calling it a doll made her laugh uncontrollably.

We hadn’t mentioned this book for quite some time, but somehow she had remembered and used it at the right time.  We are only at the beginning of exploring this strategy, but I am hoping she may be able to reflect and put it to good use.  She has named it her Panicosaurus book as this makes more sense for her.

Her memory of the disco was from last year, to suddenly blurt out that sentence must show the ideas are seeping in.  She is open to learning emotional intelligence, we just need to be creative to do it.

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