It’s time to speak up…

Supporting a child with additional needs can be a battle as well as a joy.  Parents have to negotiate with educational services, healthcare services and the general public who often lack awareness and empathy.  I tell the story of my children and I, highlighting both the challenges that we have faced and the successes we have enjoyed, from pre-diagnosis to the present.

The aim of my blog and my talks is to improve relationships and increase understanding between parents and the professionals they encounter.

It is only by educating ourselves that we can ensure that children achieve their full potential and are not hampered or vilified by our lack of understanding.

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Adventure

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When I was young I had an almost intoxicating freedom.  Whenever I wanted or needed to escape, I could simply get up and leave.  Crap jobs, crap boyfriends, crap anything meant that I could raise a weary middle finger, pack a bag and move on.  I travelled a lot.  I drank an awful lot.  By God I had fun. 

It has been painful to look at pictures from those years.  I haven’t been in a position to go adventuring and so I have closed myself off from the reminders of what was and what cannot be.  I shut a part of myself up in a box to avoid having to address it’s loss.   But now I can see things starting to open up again.  For the first time in a long time I feel that I have options.

This has been a place of best and worst.  I have always been someone who, in difficult times, puts my head down and grinds through.  I deal with things on my own, sealing up the door to people and battling through and till I reach the other side.  I always have and it is the only way that I cope.  But despite this, my friends, my brilliant friends, have been glorious. 

The last few months have been a fresh type of hell with many of those upon whom I have had to rely, proving faithless.  The bad has bled into the good and soiled it.  I have been angry, sad, disappointed, frightened and petulant.  But looking back from a slightly firmer base I have also realised how immensely lucky I have been.  My friends stuck with me and never once tried to give me advice on matters about which they consider themselves fortunately ignorant.  They invited themselves in for a cup of tea, pushed a broom around, dragged me out for a run knowing full well that I would F and blind my way along the whole route and leave them feeling worse than they did when they fetched me.  They accepted my refusals and then turned up anyway, claiming to have forgotten.  They made me secret lunches, backed me in meetings, asked me 40 times to come out for a dog walk and, when I finally accepted, wet themselves laughing as I retched every time their dogs crouched down.  They sent me ridiculous gifs at night time making me laugh so much I almost fell out of bed.  They emailed me, texted me, sent me their love from far away.  They did not gossip and used unspeakable language against those who did.  They were complicit in my petty revenges and stored away what they learned for the future.  They agreed that it was shit, stood with me when I was embattled and formed scaffolding around me to prop me up.  They expected nothing and received nothing back.  And still they remained.  I will not forget.

Change is in the air and for the first time in a long time, I can lift my head up for long enough to recognise it and embrace it.  The time has come to move on and now I can see it as a new adventure; I see opportunity.  This new venture will be tame compared to those of the past.  No solo missions overseas, no booze, no surviving on crisp sandwiches for days on end, no backpacks or spontaneity and, I hope to goodness, no sleeping in cars.  This will be a very middle-aged type of adventure, planned to the nth degree in order to reduce the fears of my children.  And this time there is someone I dearly love waiting for us at the other end.  This adventure does come with the hope that, in the long run, things might just be a little bit better. 

I’m ready.

Lioness

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Oh dear.  You were doing so well.  You’d come to help, to intervene at a time of madness and you seemed to be being constructive.  I am always grateful to people who will help.  Perhaps over-grateful.  I’d been asking for ages for a referral, which, shamefully, hadn’t been made until it was too late, but at least you were here.  My child was in crisis and I was on my knees.

You described the situation, as you saw it.  And OF COURSE, being the experienced practitioner that you are, your objective view was the right one.  Your recommendations, whilst terrifying, disruptive and desperately sad, should be considered.  After all, everyone had been doing their best, hadn’t they?

With one little phrase you blew it, you lost me, you prevented me from taking anything more that you said seriously.  While you were describing the situation, little did you know that you had set off an explosion of expletives and every fibre of my being was caught up in trying to prevent any of them from leaking out.

So, my friend, allow me to tell you where you went wrong.  ‘Feedback is a gift’, I was recently told, so allow me to gift you a wonderful present that you will, no doubt, be grateful for.  (Almost as grateful as I was for your recommendations).

You called me a ‘Lioness’; a lioness that is protecting her cub.  With that one phrase you told me that you not only saw our situation as something run-of-the-mill, deserving a stock response, but that I was simply battling out of instinct, without much thought.  Because that’s what we all do, don’t we, we ‘SEND parents’.  We just fight for the heck of it.  We are all the same, aren’t we, and how lucky for you because it must make your professional life so much easier.

You appear to be a decent person but I think you have lost touch with the people you serve.  Allow me to remind you that every case that you take on is actually different.  It is different because the people in it are different.  The parents and the children.  The fact that our children have differences does not mean that we are all part of some exclusive club, behaving in the same way and therefore deserving a standard response.  But I will tell you some of the similarities that I believe we do share. We were once young and silly, long before our lives changed in ways that we were not expecting.  We handle things as well as we can but sometimes, and certainly more often than we would like, we have to get practitioners in to move things on.  We spend our lives filling out forms, checking to see if we meet ‘criteria’, telling the same old story and vomiting up our secrets while navigating our way through situations that none of us were ever trained to handle.  And we get tired, dog tired, which means that absolutely the last thing we are looking for is a fight.  A fight for the sake of it, a fight to try to get something extra.  What we want is for our children to be happy and in order for that to happen we need those who can help facilitate it, to step in.  You have to look at the child first, make their needs the central plank of your recommendations and then meet that need; simply choosing from a list of what you usually offer is of no use to us or our children whatsoever.

And one more thing, it is a mistake to patronise us – we can smell it a mile off.

I received many recommendations during that period, some of which were massively helpful, some of which were not.  Looking back from a better place I can say, with some certainty, that yours were about as far off the mark as it was possible to be.  You got it wrong, my old chum.  So next time you want to call someone a name, I ask you to think twice.  Of course I’d be the last person to undermine you or start batting phrases around like ‘self-important’ or ‘patronising’.  Imagine how offensive that would be…

Goodbye

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Dear Friend,

I’m sending you this postcard because I’m really missing you when you leave for your new home.

In fact, I’m already missing you.  I hope you have a good time in your new home and school.

Hope you like this and the Pencil I’ve given you (It’s scented!)

Love…

Resourceful

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… when he is desperate to get on with his lego but someone has left a cup and straw on the table which makes him retch and panic and he can’t touch it or move past it so must cover it up and then thank goodness he can no longer see it so hopes in time that he will forget that it is there …

Bird of Paradise

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She walks past our house but doesn’t look over.  He is pleased to see her and follows at a short distance, not wanting to interrupt her conversation with two friends.  She heads to the park to kill some time on the swings.  He pauses, in plain view, carefully placing his PE bag on the grass and pretending to search his pockets for something.  Nothing happens.  A minute passes.  He picks up his bag and shuffles on, breaking his routine once again to enter the enclosed area nearby.  He wanders around, feigning interest in his surroundings, placing his bag carefully on top of the equipment and picking it up again, pretending to look for something, wanting to look as if he has a purpose while casting furtive glances in her direction.  Surely it must be that she simply hasn’t noticed him.  She is his friend.  She stuck up for him when he made a mistake.  She just needs to notice.  

Over to the trim trail, balancing on the slippery logs, a job well done.  Back to the bag which warrants further inspection.  She still hasn’t spotted him. Must try harder.  He climbs to the top of a log building and turns his body, but not his eyes, towards her, displaying his fabulousness like a beautiful bird, impossible to ignore.

She is stuck.  Time is ticking on and she is going to be late.  She sends out a friend to walk past and see if that lures him away.  It doesn’t work.  Eyeballs glued to their phones, the three friends strike out together, moving slowly, deliberately.

He sees them coming and, with panicked haste, clambers back down to the ground.  He grabs his bag and runs all the way to school.

I wish he would talk to me about it.  I wish I could reassure him that she is still his friend but that this morning simply wanted different company.  I wish that our daily chats about friendships made things easier for him.  I wish I had not spied on him.

Trainset

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Last night I rearranged my kitchen.  Not drastically but I’ve had a chuck out and put a few things in different places.  My son and his father had gone on a long journey to watch a football match and my daughter was sitting wide-eyed in front of the television. I seized the moment – there have not been many in this long summer holiday.

They returned at 10pm.  At 10.10pm I walked back into the kitchen to find that each item and appliance that had been moved had been returned to it’s previous location.  Nothing had been said, nothing needed to be said, the kitchen had simply been corrected.

When my boy was 4 and I was still struggling with toilet training him, I decided that the incentive should be something for his wooden trainset.  Success was measured by stickers on a laminated reward chart with the photograph of the reward velcroed onto the bottom right hand corner.  We started ambitiously with a £13 ‘train washer’.  Before long I realised that my carer’s allowance was not going to accommodate such lavish recompense and we switched to interesting-looking junctions and then, eventually, individual pieces of track.  It can take a long time to train a non-verbal child as you must first establish cues and try to explain why it is a necessary change. Change… my son’s most formidable enemy.

Before long the trainset had swelled to gargantuan proportions although my boy would only use only a few pieces at a time.  I thought I’d step in and help him as it was clear that he was finding it difficult to use the new pieces.  One morning, after dropping him off at school, I embellished his arrangement with all the exciting new accessories – stations, train sheds, extra bridges, turntables and exciting twists and turns of the track. It looked fantastic and I could not wait until he returned home.

He hadn’t had a great day at school and was mightily wound up.  It took us about 10 minutes to walk home instead of the usual 5.  His schedule was waiting for him when he got home and he knew it was time to play.  I went to the kitchen to get him a snack.

Crying and screaming pulled me back.  I ran into the playroom to find him tearing up the track, frantically throwing pieces back into the box.  He was in a frenzy, a desperate meltdown and nothing I could do would calm him down.  It took him about 10 minutes to recreate his original lay out.  Every single piece was exactly where it had originally been and he knelt down, panting and crying.  He was too upset to play with it but, in time, the horror passed.

Last night reminded me that the horror remains.  When I let out an involuntary ‘Oh no!’ he burst into tears.  ‘I’m sorry Mummy, I didn’t know.  Why did you do it when I was not here?  Why did you move the bread bin without telling me?  I did not know that the coffee machine needed to be there.  I am so sorry, I didn’t know’.  

He has learned, to some extent, to deal with change every day and accept it as an inevitable part of life.  But he notices it all and it hurts him.  Still.  No matter how hard I work every day to prepare, to minimise, to support and encourage, accepting change is and will always be the greatest challenge of his life.  As he grows we expect more of him, we must, but equally we must not forget that he will always be drawn to that which has become comfortable.  Why?  Because the world is so bloody confusing.  

Maths

 

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A note to his teacher in April 2016.

I find maths easy in my brains.  I am able to read maths questions and crack the answer out of it’s egg.  I work out sums with all my skills.  I am just not that good on games which you have to say it first.  With my brain, it just needs a few seconds to calculate it.  Saying it the second after the question is read really puts my brain off.  Mathematics is very good with Mrs Jones around.  Most things in maths are things I can do without help.  Times tables are a really good way of learning maths successfully for me.