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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Inclusion Part 2. One down…

 

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Photo by Skitterphoto on Pexels.com

Yesterday I made the 200 mile round trip to visit two schools for my daughter – the same two schools that I had been told had ‘raised concerns about meeting need’.  On the strength of the objections I had been asked whether I would like to try other schools.

I had asked the new Local Authority for a list of the objections in order that I could answer them/check their legality but they had refused to do so as they felt it would compromise the schools.  Poor old schools, eh?  Mentioning both the Code of Practice and the Children and Families Act 2014 in my subsequent email seemed to have a dramatic effect on the bowels of my contact in the SEND team who was either away from her desk or in the toilet every time I phoned.  Any correspondence was, henceforth, vague, woolly emails.  The one time I did catch her, at 9.01am, the conversation was defensive and unsatisfactory.  I asked how she could expect to answer the objections having never met my children or spoken to their schools.  I suggested it might be a good idea to discuss them with me. 

The first school was the catchment area school that I had not applied to but to which the LA had felt the need to send over, without my permission, my daughter’s highly sensitive information.  I learned that their response had been a flat no due to their own capacity issues.  The school itself was tiny, the Head Teacher stressed and losing key staff due to budget cuts and we had a frank conversation.  The majority of the conversation was about their inability to handle another child in that year group (they were already 3 over the maximum allowed) and all their financial and staffing difficulties.  I interjected with information about my daughter, when possible, and in the end, we could both appreciate each other’s point of view.  She had heard nothing from the Local Authority since sending back her response to their application.  I left, certain that despite it being a lovely school, it was not the right setting for my daughter.

The school that I had previously thought I had secured, was next.  This was the school I loved, whose SENDCo I felt I had connected with and whose rejection came as a tremendous blow.  The LA had told me that I should communicate with them directly and take my daughter there first in order to secure a place.  When I booked the appointment, the school said that they would not need to see her.

I was ready, massively wound up and dressed smartly with violently assertive lipstick.  I was determined not to blow it.  My sister was adamant, ‘You can do this.  You know it’s the right place for her.  You can make them see it’.  

I was greeted in the office by the Deputy Head/SENDCo who was beaming.  This was disarming.  I beamed back.  ‘Lovely to see you again.  Please come through’.  Into the Head’s office to shake hands with the other SENDCo (yes, you heard me, the OTHER SENDCo), also beaming.  My violently assertive lipstick was beginning to stick my lips to my teeth.  I sat down, notepad in hand.  ‘I understand that you have some concerns about offering my daughter a place and I would really like to discuss them and work with you to overcome them.  This school remains my first and only choice of placement and I sincerely hope that you can accommodate her’.

Three people simultaneously un-beamed.  They had heard nothing from the local SEND team since sending in their concerns which were, in their view, absolutely no barrier to offering her a place.  Catchment was irrelevant.  They had made a provisional offer to a TA that they thought would be terrific and wanted to discuss her suitability with me so that we had first dibs.  They were only sorry that they would only have my daughter for a short time before she would move on and up with her cohort.  If I had the skill (and did not have a backside the size of a hot-air balloon) I might have done cart-wheels around the office.

They were astonished to learn that the LA had suggested I take my daughter in to the school in order to secure a place.  They had never expected children to be checked out first and have never, ever, turned down a child with SEND.  The school had been waiting to hear a response to their concerns in order to move forward and had heard nothing in the weeks that followed.  All the stress, all the worry, the fear, the anger, everything had been caused by poor communication and a total lack of care by the people who were supposed to be helping secure an appropriate place for my child.  Cheers for that.

The Head Teacher printed off the form that they had sent in and we discussed each point.  They had already made plans. The OTHER SENDCo understood everything that I said and almost finished my sentences for me.  All of them had been trained to handle my daughter’s specific issues and were completely un-phased.  They recognised the importance of EVERY member of staff receiving the same training; lunch-time supervisors, playground staff, EVERYONE.  This programme was already underway.

We discussed transition visits and they asked what I felt would be helpful.  We finished the meeting.  They apologised once more for the distress that had been caused and looked forward to our next visit.  I moon-walked out through reception.  Well, almost.

The relief, when I walked out of that school, was almost over-whelming.  My little girl will be going to the right place after all.

I could so easily have buggered this up by doing what was suggested and looking for a different school.  There was absolutely no need.  Whilst this whole episode has caused me to doubt my own sanity, I have, at least, the proof of a few mis-guided and mis-informed emails to reassure me.  So, thanks awfully to those responsible for the weeks of unbearable stress.  For the feeling of injustice and impotence.  For the nights spent researching the law and the panicked phone-calls to colleagues. For all those mornings with a 4am start and the extra pounds that I have stuffed onto myself as my usual coping strategy.  I am absolutely LOVING the feeling of my biggest clothes restricting my breathing.  What larks.

So, to those responsible – both the school and I followed the procedures that were in place and have, by sheer chance, snatched victory from the jaws of defeat.  May I suggest you crawl out of your mythical toilet, pick up the bloody telephone and actually SPEAK to families like mine who you are supposed to assist.  What a ridiculous waste of time and energy.  This is on you, folks.  Do better.

I have still got to secure a school for my son.  One down, one to go.  On on…

 

Inclusion

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So, we are moving.  Both children require a school place for September.  I have done my homework.  I have sat in front of a map and have read Ofsted reports and SEND policies.  I have met with SENDCos and spoken to parents.  I have found two schools that offer an excellent education to their pupils.  If my children were neuro-typical the process would be straightforward.  You visit your local schools, choose, apply and, within a set period of time, you find out where you child will be educated.

Not so when your children are different.  You apply through the Local Authority SEND team.  They contact your current local authority and the first round of finger pointing ensues with both complaining that they have not sent/received what they need.  The parent chases, in my case, for months.  Eventually, the appropriate documentation is sent and the new council sends out requests to the selected schools.

Upon receipt of the requests, each school must consider carefully whether there is any concrete, legal reason why, in spite of all reasonable adjustments, the child in question cannot be educated in their establishment.  In our case, no school can say that they are full as my children both come with provision for an extra member of staff.

Both children are armed with an Education, Health and Care Plan which catalogues not only their needs but also instructions on how to meet each need and a list of outcomes that will be achieved by meeting those requirements.  Helpful, you would think.  Constructive.  A decent Plan, when used appropriately, reduces the guesswork, ensures as close to a smooth transition as is humanly possible and has the potential to improve the prospects of the child immeasurably.

Sadly, this is where the wheels seem to have fallen off.  Both potential schools appear to have thumbed through the EHCPs and circled the parts that they don’t fancy.  They have spoken to the children’s current SENDCos and, despite fervent assurances, have decided that, on reflection, they can’t/won’t/seriously can’t be arsed to take them on.  Staggeringly, we have also managed to be rejected by a school that I had not requested – it’s borderline impressive.

I am now in the delightful position of having to fight to get my children into schools that don’t actually want them.  I cannot tell them to get stuffed and have to continue to appear happy to work with everyone, despite feeling that they have stabbed me square in the heart.  Immediately I am on the back foot and I will need to concentrate wholly on this issue and no other until it is resolved.  I now have to challenge, via the new local authority, as I do not believe that either establishment will actually be able to come up with any legal reason why my children’s needs cannot be met or why, with the correct support, they would not thrive.  One school has suggested that they meet one of the children first, to allay their concerns.  This trespasses dangerously close to disability discrimination as it adds another layer of criteria to their potential admission – if they can prove that every other child in their establishment had to be met/interviewed first, absolutely fine.  I think we all know that that is not the case.  Imagine seriously expecting a frightened 6 year old to cover herself in glory the first time she looks round a new school.  Then imagine that same child thinking that she’ll be going there only to tell her that somehow she has failed to impress.  It’s a fucking nonsense.

Every school talks a good game regarding Inclusion.  Their websites showcase their policies, quoting the law, the SEND Code of Practice, their stringent rules against discrimination.  You stand, with your children, on the other side of a closing door as someone shouts through it all the things that they think they represent and believe, all the while desperately trying to padlock it shut lest you sneak in with all your tiresome needs.

Once more I have to push, to fight, to go into battle.  This may simply be Round One.  I will answer all of their questions, assure them that I will work constructively with them and I will have to continue to research our legal position.  I am so bloody tired of having to tell people what they ought to be doing. Whoever does, eventually, accept my children will find me immediately on the defensive, questioning everything they are doing because I am a mother and cannot let the new teams’ shameful lack of will affect either child’s future.  ‘Chose another school’ you might say.  I’d love to.  Find me an excellent one, where my children can make local friends and that will welcome them with open arms and I will.  I thought I had.  Believe me, it’s slim pickin’s.

All this time I must continue to impress on my children all the wonderful things that will come with our move. Time is running short and they are already asking about their schools; my son has even asked me whether the new teachers will understand him.  Imagine if they knew this.  

So, new schools, let me tell you a few things about my children that you may have skipped over with your highlighter.  Every morning my daughter brushes my son’s hair for him because she wants him to look smart at school.  He hugs her before he leaves and wishes her a great day because he knows that he is going to have one.  They try, every day, to join in as much as they are able and, when given the right support, they succeed.  They have made strong friendships and are popular with their peers.  Their Teaching Assistants and SENDCos care deeply for them.  They work hard and feel that they are part of their schools.  They are strong, resilient, loving and kind. They are the bravest people I have ever met.  I cannot begin to express how proud I am of them.

So start again.  Bin your previous, shameful work and bloody well start again.  Or remove your Inclusion Policies from your websites because they are a fucking lie.

 

Supermarket

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It had been raining for days.  There were only a few places that we could visit without a meltdown and all but one of those was outside.

We were low on the six foods my son would eat so we prepared ourselves for the supermarket.  Photograph, PECS schedule and shopping list, emergency supplies etc.  He had his own little shopping trolley and, once shown the photo of the supermarket, he was happy to get into the car and go.  It was his favourite route, the one he knew off by heart.  The right place to go in the car.

We made our way over to the trolleys.  They snaked out from under their shelter, the first ten feet of them exposed to the elements and therefore dripping with water.  I pulled one out.  One look at it was enough.  A full-blown meltdown.  Screaming, crying, trying desperately to get away.  They were different, wrong, in fact so wrong that he felt it in the depths of his soul.  If something like that could happen to a trolley, who knows what else could happen?  He started attacking his trolley, crashing it onto the pavement, trying to hurt it. With one hand on the big trolley, I caught him with the other hand and pulled him inside, knowing that if I could just dry the trolley, all would be well.  We stumbled towards the Customer Service desk in the hope that someone would help.  Two queues of people stood next to each other, waiting to buy their cigarettes and lottery tickets.  As I desperately approached the desk with a screaming, terrified, non-verbal toddler and his deadly weapon/toy trolley in one hand and a dripping wet supermarket trolley in the other, the two lines shot apart to make space for our crisis.  It was like the parting of the Dead Sea.  The new space meant that my boy could swing round and start ramming the desk with my big trolley, desperately trying to get it, and it’s horrible strangeness, away from him.

Every single person in the queues turned their backs.  I tried to catch the eye of the woman behind the desk but she was too busy exchanging superior looks with a middle-aged man in a flat cap.  You know the looks, the ones that scream revulsion and disapproval.  The ones that say that the parent is hopeless, that they shouldn’t be allowed in the shop, that the spoilt child just needs a good hiding.

‘I need to dry the trolley’ I said.  ‘Please can you help me.  I just need to dry the trolley’.

Nothing.

‘Please, haven’t you got paper towel somewhere?’  ‘If I can dry the trolley, all this will stop’.  ‘Please help me’.  I was shouting.

Still nothing.  The noise was unbearable.  I’d dropped my handbag and the contents rolled out across the floor.  I’d thrown down the empty shopping bags and managed to push away the toy trolley.  The large metal trolley was being rammed into the desk.  Our circle of destruction was about 8ft across.  All backs still turned towards us.   I was trying to soothe him, ‘It’s Ok, it is only rain, we will dry it and it will be OK, someone will help us, it’s OK, it’s OK, it’s OK.  I sounded pathetic, useless, a crap parent.

The Woman finished exchanging haughty looks with Flat Cap Man and, sighing heavily and with an exaggerated apology to the person next in the queue, strode around to the other side of the desk.

‘I just need to dry the trolley, please, just some of that blue paper towel you always have, PLEASE’, ramming, shouting, screaming, crying, terrified child, helpless mother, revolting in our un-British display of embarrassingly extreme behaviour.

Levelling me with a look of pure disgust she stalked off, saying nothing.  I could see, from behind the backs of silent lottery queue, her dragging, like an over-enthusiastic bell-ringer, great lengths of paper towel from a secret holder inexplicably concealed between the double entrance doors.  Back she came, holding a mass of blue paper towel, easily 20 feet in length, and threw it angrily into my trolley.

‘IT’S OVER THERE NEXT TIME YOU NEED IT’ she yelled, spinning on her heal and returning to her station in triumph.  Flushed with satisfaction she shot another exaggerated look of apology to the next in line and resumed her Customer Service role for the deserving few.

Within seconds I had dried the trolley.  The meltdown quickly fizzled out and my boy, despite streaming eyes and shortness of breath, took hold of his toy trolley and calmly jogged off in order to start his usual and unwavering route around the aisles.

What to do?  I wanted to scream at her, shout how she had made me feel.  How easily she could have helped.  I wanted to put my boy straight back into the car, return later with a flame thrower and torch the place.  That, or a stiff letter to the Manager (probably less felonious but unarguably unsatisfactory…)  To tell everyone whose backs were turned that if just one of them had been a decent human being and had stepped forward to help, the whole thing would have been over more quickly and less painfully.  I wanted to run out of there and never come back.  But my boy was off, about his business, ready to collect the items on his list and I was going to have to suck it up and get on with it.  I trudged round the supermarket tearful and over-whelmed with resentment and shame.  I didn’t go out for days after that.  Because what was the bloody point?  Meltdowns at home instead please, minus the audience.

It doesn’t take much to help a situation like that.  All it needed was for someone to step forward and say ‘Tell me how to help’.  I would have and by God I would have been grateful.  It is possible that I might have also suggested that they go and punch The Woman and Flat Cap Man in the face but I would have understood if they had declined.  Eventually.

I know this because one day someone did help.  Another supermarket incident but this time, in the car park.  A thoughtless prick had parked so close to my car that it was impossible to open the door next to the car seat.  My son absolutely could not enter the car by any other door without a catastrophic and self-injurious meltdown.  We waited and waited and waited.  After half an hour, in desperation, I stopped a woman who was going into the shop and asked if she could just hold my son’s hand while I reversed out.  She did.  She happily stood on the pavement, chatting away to my boy, reassuring him that he was going to be able to get into the car and go home.  She didn’t ask me why he couldn’t just use another door, she just did what I asked her to do and went quietly away about her business.  Not all heroes wear capes.  Not all people are decent.  Be the person that understands and acts.  You will be make more difference to a person in need than you can possibly imagine.

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 …