untangling this thing we call life…

Category Archives: school


parking_place

photo by Robert Rickhoff

Special schools are not mere parking places for children who do not fit the mould our educational system seeks to fill.

In fact, language is changing a little. Five years ago, we spoke of special schools. Now, they are known as specialist schools. It’s a tiny change, and then again it’s huge. As words do, the word “special” has become derogatory, and needs updating somewhat. So our children are now more and more referred to as having additional needs rather than special needs. As much as we may resent it, semantics are often more important than we would like.

My son has been in a specialist school for several years now. His teachers, care staff and us as his parents have worked solidly as a team to help him grow and develop. The system has no way of measuring the kinds of progress he was making in all the time that he was refusing to attend classes. So it came as only a slight surprise that Authorities paused before agreeing to fund a similar placement for his post-16 education…

Our young man, however, has been given the time, space and support to grow; to develop his emotional brain without which any learning is simply not possible; to develop life skills that allow him to manage the simple day to day aspects of life that just do not come to him instinctively; to become independent in a way that boosts his self-esteem and gives him the ability to move forward. For the last few years, simply getting out of bed has been a huge challenge for him. He has had to manage some emotional upheavals that have left him bereft and apprehensive at the thought of forming new friendships. He has been hemmed into a national curriculum that did not have the flexibility to allow for that growth, but he was surrounded by teachers who were able to bend things enough to allow him to survive.

Against all odds, he sat four exams at GCSE and passed three… a remarkable achievement given his mental health and his struggles with autism.

In September, he made a fresh start at a new college. No younger, annoying kids. No school grounds – his house is an ordinary suburbian house, a mile away from the teaching building. No uniform. No one-size-fits-all timetable. No adults dictating what he can and should not do. The independence and freedom afforded to him and his peers terrify the Authorities… after all, these are vulnerable young people.

Yet…

My son responds best to those who treat him as an equal, as a human being in full rather than a child who must conform “just because”. And he has found himself surrounded by adults who do just that – they consider him a young adult, and listen to him. In a subtle, gentle way that comes from years of experience, they are able to encourage and guide him with huge respect.

He has been there four weeks. He is happy – happier than I have EVER known him. He is attending classes at least three days a week – an improvement that no one could have predicted. He has made a group of acquaintances with whom he is spending time socialising. He is engaging with his teacher and with the adults on house.

This is success beyond measure. It is likely that there will be hiccups along the way… but we are absolutely on the right path to a young man who will be ready to step into the world as an independent young adult in a few years.

What makes this work is the relationship that we carve with his teachers, the care staff. We speak at least once a week, we email progress reports, concerns, celebrations. We listen to him…  We hear what he has to say and we adjust our expectations, our hopes, our demands accordingly.

So a specialist school is not a parking place. It is a school, or college whose physical environment has been carefully considered with its cohort of young people’s needs in mind. It is a community of teachers and adults who have huge collective experience of  a certain group of young people but who, more than anything else, understand that every single one of their students is an individual who must be treated as such. And it is a community that understands that success can only come when the young person is placed firmly at the centre, and surrounded by a team of parents, educators and carers.

When you bring all those factors together, amazing things can happen. I’ve been fortunate enough to find the right specialist school for each of my three children. I’ve worked hard to help the Authorities see why those schools would lead to the best outcome for them. I’ve worked continuously and very hard to ensure that those placements worked as well as they could. My job as a parent of very special children does not stop when they are at school… but with that collaboration..?

With that collaboration come hope, joy, progress. And every now and again, success.

 



After all the battles, worries, stresses of helping three children navigate early childhood in spite of various disabilities; of clamouring at the doors of agencies whose role is to help support such children, but who are understandably all too aware of their budgets; of maintaining some kind of family “normal” and endeavouring to seek out little pockets of fun and Happy…

After all that, here we are:

All three children are Safe.

All three children are in an environment utterly suited to allow them to Thrive.

All is well.

[Just to be sure… the difficulties and needs have not vanished. They remain, and cause hiccups weekly, daily, sometimes hourly. But the external source of constant anxiety has gone, and we are experiencing something close to normal family life for the first time.]

One of the aspects of my character that has been most tested in the last decade is Trust. I am by nature an extremely trusting person, and also fiercely loyal. Once you have earned my trust, I will be utterly loyal to you even in the face of apparent difficulties and even betrayal. This has seen me bitten, and I have no idea whether it is a positive or negative aspect of my personality… it simply is.

So in this spirit, when the first raft of professionals entered my life, I trusted them. Each and every one had my Trust as a starting point. I’ve often been told that was and is naive. It is beyond my control, it simply is.

It will come as no surprise to any parent of special children that I have been battered as a result. A few months ago I sat in the paediatrician’s office in tears, telling her that I had become cynical and jaded, and that this above all else was breaking me.

I do think on the whole that I have retained my ability to Trust, but every now and again, I question myself. For someone as riddled with self doubt as I am, this is frankly exhausting.

A Child is struggling (no surprises!). From the outside, it would appear that school are doing very little, and showing very little concern for his abandonment of any pretence at learning.

I Trust. Everything in my being tells me that they care about that Child, and I know they have the experience to deal with him, so I Trust.

Until a day comes, as it did today, when self doubt enters the mix of legitimate anxiety and “special” management of the Child. Self doubt tells me that maybe I should be doing more. Self doubt asks me if school is doing what they should. Self doubt tells me that school have not been in touch for a few days, that I have not seen paperwork and plans. Self doubt tells me that I am a Fool to Trust.

And in voicing such doubts to friends, I am met with legitimate, understandable questions: maybe school should be doing this, and that and the other. After all, the Child must learn to do what is required etc…

Self doubt grows in strength, bringing with it its groupies, Panic, Anxiety and Tears.

Luckily, I know this pattern. I live with self doubt in uneasy truce, but I know his ways and I am ready.

I called the school.

And a simple fifteen minute conversation confirmed that Trust was right. That all the measures fed by years and years of experience are in place. That the Child is not Lost, that he is Cared for, Supported even though he may not like it, or realise it.

The call was a good one to make. I was able to speak of my need to feel a part of the Team again, and school agreed that they could help me with that. I allowed Trust to win, and I allowed school to reassure Me… to tell me that what I am doing (or not doing) is allowing them to best help the Child. That there are no magic wands, but that slowly and steadily we are on the right track.

This… this is what I have striven for.

Not the eradication of disabilities, of differences, of difficulties.

Merely the right support and knowledge to allow my family to experience life in as normal a way as can be (warts and all), and allow my children to thrive.

And I am deeply, deeply grateful to live in a country where that is possible. As difficult as it may be to access this help, at least it exists.



I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.

I ask for things I tell you my children are entitled to, and the passion that fills my voice, the knowledge that comes from hours of research, the tenacity that fills your inbox leads you to only one conclusion: I am asking for the world. Or at the very least, a sizeable chunk of the budget you are held responsible for. I ask for my Dream…

And suddenly I am struck with a thought… You must believe my Dream is the dream of a spoiled child with no sense of reality… You must believe I am demanding. A scrounger maybe. Out for something every parent wants, that exists only for the elite few with the funds to provide it. You have told me often enough that “the law allows for every child to have an education appropriate to his needs, Mrs S. That does not mean a Rolls Royce education”. Because as much as we would all want that, a state funded education cannot be a Rolls Royce education unless we are all willing to pay substantially higher taxes.

I have always been struck dumb by this statement. And it came to me today that the problem comes from a staggering disparity between what my expectations are, and what you fear them to be. (My expectations are surprisingly common amongst my friends and all the other “Special Parents” I have had the fortune to meet.)

Welcome to my world, my family. Welcome to my children, my aspirations and my expectations. Welcome to my Dream.

Let’s begin with a little boy, aged 6 a while ago, recently diagnosed with Aspeger’s syndrome. I want my little boy to experience more than one day every few weeks during which he does not feel so desperate, so afraid, so lost that he begs me to kill him. I know that his intellect is astounding, that a “normal” parent would be wishing for that private education that offers small classes, top of the range equipment, exam tuition. That normal parent would be expecting great things, scholarships, university and the sky.

Let me tell you of my aspirations for that Boy, and my expectations.

I hope that he finds some inner peace. I hope that he finds himself able to pursue an activity that gives him a sense of satisfaction. I hope that he is able to live independently.

I expect that he will attend a school staffed with people who understand the complexities of his “condition”. I expect that he will be emotionally and physically safe primarily, and that he will have access to academic education that will allow him (if he allows himself) to learn and progress intellectually. That. Is. It. The sum total of my expectations.

Secondly, we’ll find a little girl. Emotionally so vulnerable due to her childhood circumstance on top of Asperger’s syndrome that she spent the entirety of her junior schooling (aged 7 – 11) in a state of almost constant panic. Once again, exceedingly bright and able, willing to please and to learn. The “normal” parent has her education all planned out: tutoring and scholarships, early exams no doubt. Extra-curricular activities include gymnastics (she was chosen for an exclusive group due to talent), swimming, music. Her all round ability stuns that normal parent so much that the sky itself cannot limit her.

So here are my hopes and dreams, my aspirations for this amazing Girl:

I hope that she learns to tolerate the world. I hope that she allows herself to be loved. I hope that she finds a little corner of the world to call her own, and something to do that will give her a sense of accomplishment.

I expect that she will be able to go to school and be emotionally and mentally safe. I expect that she will not be in “fight or flight” mode every single day of her school life. I expect that her particular brand of autism will be understood and that her teachers will know to give her time to express herself. I expect that the educational system will allow for her to take some exams early, and some late to allow the time and space she will need to achieve. That will do… very nicely.

And then lastly, we have the Little Man. He has a range of medical problems, some moderate learning difficulty and his social isolation caused by being different has made him very fragile emotionally. My “normal” couterpart would have seen this little boy in all the drama clubs, sports groups (I’m removing the physical complications here), parties galore. He is the clown of the group, loved by all and entertainer extraodinaire. I’m out… this little boy’s history is such that a future was never dreamed of, and so every day, every year is a rather miraculous bonus.

But here we go… here are my dreams for him:

I hope that he is well enough to live, and enjoy living. I hope that he is well enough one day to live independently. I hope that he will have friends.

I expect that when I send him to school in the morning, I can be sure that any medical emergency will see him as safe as possible. I expect that he will be looked after by the adults at school, and that he not be the expert in his own medical care. I expect that his schooling take into account his physical problems. I expect that the staff at his school be in regular contact with me so that we can ensure his long term health. I expect him to have “peers” at school… a group, however small, of children with whom he has enough in common to forge relationships.

I do not believe that I have described Rolls Royce education in the way you describe. I believe that I have describe some basic conditions that we often colloquially refer to as human rights. I believe that I have asked that each of my children:

  • Be physically safe while at school
  • Be emotionally safe while at school
  • Be able to learn within his or her intellectual, physical and emotional ability

Do not be afraid of my passion, my despair, my anger. They stem from my heartache at seeing children flounder much as fish do out of water. They stem from my feeling that as loud as I shout, as deep a river I fill with my tears, as much knowledge and evidence I provide you with, you do not hear, you do not care, you do not acknowledge. They stem from the knowledge that as simple as my Dream may be, it seems as far from me as Fantasy.

Please show me that my feeling is wrong. Show me that you hear, show me that you care, show me that you have read that evidence, that you acknowledge that I know many things about these particular children that you cannot because you have not lived with them.

My expectations are not those you fear…

My dreams are far, far simpler than you may think…

Please… be my Dream Catcher and let us, together, make those Dreams a Reality…



You work in a department whose whole purpose is to deal with us… the problems.

Your boss no doubt often reminds you that you are working with a limited budget – as we all are, and then you pick up the phone, or open your email, and there WE are… there I am.

Telling you that you must address my concerns. Reminding you that our country gives rights to my children and that you are charged with ensuring those rights are met. Begging you to listen, to help because I am at breaking point… again.

And you work in an office where everyone is in the same situation. You are all dealing, day in, day out, with a problem: children who cannot get through childhood without a great deal of extra help.

I like to think that you arrived in this office glowing with hope and ambition to make the world a better place. You might even have known a child like one of mine, you might have seen the difference a good decision can make, or the destruction a wrong decision wreaks. I like to think that you come to work each day hoping to make a family like mine breathe just a little easier.

But day after day, you come to work and you deal with the problems. And there are simply too many of us, aren’t there? That limited budget combined with systems and processes old as time forces you and I to be on different and opposing teams. I have become the person who will steal some of that tiny budget you have, and you have come to think you must protect that budget at all costs. You have become the next hurdle in my quest to help my child be safe and grow.

I’ve been thinking that you see too little success, because you do not truly understand the nature of failure and success for children and families such as mine. How hard it must be to go into work each day, be ground down from above and pulled down from below, and in the end feel that any difference you can make is insignificant.

Let me tell you the picture I hope for…

In my picture, we talk, you and I, as equals. We put my child’s photograph on the table, and we talk about the achievements I have seen that week, that month, that year. We can do that, because we both know the problems he or she faces, and we both acknowledge them. If there are no achievements to talk about, that right there tells us that there is something we must change.

In my picture, you listen to me because I am an expert. I have raised this child since he or she was born, and I have navigated the challenges he or she faces from the beginning. In my desperation and heartbreak, I have learned to research, to ask questions, to learn and learn, and learn again. I have learned the facts, but I have also learned to communicate them to you, to doctors, to teachers, to social workers. I am an expert because I am my child’s voice. I am an expert because I am emotionally invested. I am fiercely protective of this child because he or she is far more vulnerable than others of his or her age. I am fiercely protective of him or her because without that fierce protection, he or she cannot survive. And in my picture, you know that this fierce protection is far from a problem… it is a strength, and it makes me your best partner. Because I am an expert, you know that if I am anxious, there is cause and so you listen.

In my picture, I listen to you when you talk about budget. Because in my picture, you teach me how much each service costs. You tell me what each pound will buy, and you tell me what money you have available. And in my picture we whittle down what is needed and what money is available and we find a solution. Remember, I work with a budget every day… I do not work because I cannot work… because my children’s needs are such that it is impossible. So I know what a budget is, and I know all too well that you also have a budget.

In my picture we talk about the big picture… how will our decisions impact on this child’s life as a whole? If we can agree to “x” help for five years, will this child be able to live independently? If so, this saves untold amounts of money in benefits and care for a whole life. And for some of these children, the reality is that their contributions to our economy and tax system will allow you to care for those children who will need life long care…

In my picture, you listen to me because you know that my drive to find the right solution is greater than yours- that means I do your homework!!!

I know I am your problem. And I know that there are many of us, and that your work must seem like an insurmountable mountain. But I believe strongly that if we listen to each other, if we talk…we can work together, with respect and kindness, and find the way to help these children in such a way that they cease being simply a problem.



Tensions are rising once again…  Tomorrow marks the last day of the holidays, and anxieties about returning to school are causing little flowering bursts of panic, micro-explosions, less than silent pops of paranoia…

Much like one of those rather beautiful little games seen on such sites as Facebook, whereby a couple of bubbles  grow and must be popped.  If you fail to pop one before it hits another, more bubbles appear, growing in number at a frightful rate.  Much like this game, we have become a family of bubbles waiting to burst, to pop, to explode into nothingness, or chaos…

And so we try to protect ourselves and each other from those explosions of anxiety, anger, frustration, fraught anticipation.  The only way in which we instinctively seek to do this is to withdraw.  Some of us quite physically – behind screens, in front of meaningless games or distracting laughter inducing comedy.  Others behind a smile, an encouraging hug, an “it’ll be alright, you’ll see”…

Either way, it’s quite false.

There is a fear of pain there… fear of pain inflicted by others onto us, their anger, retribution, nameless emotions… fear also of inflicting our own pain onto those we love…

That bubble we wrap around ourselves for self protection is now itself wrapped by a bubble put in place for the protection of others… because if we explode, we will hurt those we love.

All good, all utterly sensible in the end, except for one thing…

… those bubbles, they do so isolate.

And so the five of us (nope, four… the little one is largely oblivious to the quite insane construct going on around him).  So the four of us find ourselves in terribly separate bubbles.  Three of us almost certainly have constructed these Double Bubbles.  One, wonderful, beautiful, awe-ful boy has a rather more fragile bubble… it does tend to pop with alarming frequency.

It doesn’t help, you know… the building of bubbles.

I’m not yet sure how to manage without them, but I do know they don’t help.  They merely serve to render us alone, trapped inside a fear of the pop.

And thinking about it, would the pop be so terrible?  I know there is a science of bubbles… and that the pop is as much a part of the bubble as anything else.

The pop frightens me terribly, and so I keep constructing my bubbles.  I know that in a few days, when some kind of stability has been re-established, I will be able to merge my bubble once again with that of Darling Man, and that of Sweet Girl.

I know that we will slowly dismantle our temporary outer bubbles and that the isolation will dissipate.

But I recognise a pattern that we continually repeat.  That our endings and beginnings are merely transitions from one state to another, a little like a pendulum.

And despite all the growing I seek and hope to achieve I’m not sure that I’ve really managed to move on at all from all the various traumas of life.  I think I might be standing still.

Whether that is good, bad, or something else entirely I have no idea at all… Thoughts to ponder as once again I find myself running to this page at the end of a school holiday.



Funny old thing, this blogging.  (That sentiment does crop up endlessly here, I apologise if it annoys some.)  I’m struck today by the jumpy aspect of blogging.  Life rushes forth, as ever, and it’s true to say that I don’t prioritise blogging above the everyday.  I need, I think, to keep the real and concrete aspects of my life rather higher on my to-do list than this pleasant, warm and fuzzy land.  More’s the pity!

Anyhow, the jumpiness of my blogging became apparent to me this evening when I saw that a lovely follower (go visit her blog over at FEC-this) “liked” a post I wrote a short while ago.  Although it’s not long ago, a lot has happened in my real world, and I’d forgotten about it.  And reading it back, I can’t help feeling I had left the story half untold.

I was writing about my anxiety and anticipation about helping those darling children back to school.  Let me just say that life has really been rather lovely since, if hectic, and as we prepare for the beginning of the next holiday I’m feeling about as calm as I can hope to be.  Back then, my nerves were rather on edge!  I was hopeful that all would be fine on that fateful Tuesday morning.  That I’d be able to help Eldest into the car, zip him back to school and get back just in time for Sweet Girl  and Little Man to come home and then pop out once again in the evening to meet Sweet Girl’s teachers and learn about her progress.

Oh me. Oh my.  NEVER underestimate the power of anxiety teamed with the neurological set up of the autistic mind.  My wonderful little boy, who’s actually a young man in every way just suddenly utterly lost the plot about fifteen minutes before departure time.  All the procedures had been followed – calm preparation, many gentle reminders, and I had given him a departure time one hour earlier than I needed to go.

Fortunately Darling Man had stayed.  Our departure time had been 10am.  We finally left at 3pm.

Darling Man had to take the day off, in part to ensure I was safe, in part to be at home when the Littles returned home.

I have yet to meet Sweet Girl’s teachers.

Eldest made it back to school on the appropriate day, if many hours later than I had planned.

More importantly, when he called home later that night, he was able to articulate his feelings: that actually, regardless of anything else going on, he felt strongly that back to school days should be all about Him.  Not about the Littles, who get to see Mummy every day.  That it was OK to be busy on every other day, but that back to school days needed to be focussed on his needs.  Utterly, completely justifiable.  And his ability to express that so calmly, so kindly, with such an understanding that it sometimes is very difficult to achieve means that we are already planning how to make just that happen in January.

We hope to make a day trip of the event.  For Darling Man to take an official day off (rather than a rescue me day), for me to find alternative care for the Littles, and for us to take Eldest down, take him out to lunch, and re-settle him as much as possible.

Watch this space.  It may work like a dream.  It may simply postpone that moment of transition and trauma, and displace it.

No matter.  He found the words to tell us how difficult this had been for him, that he had not meant any of the aggression that his body displayed, and that he was simply scared.

So there we go… without going into the gory details of an autistic meltdown and the devastation that ensues, especially for the young man in question, that is the end of the Back to School story.

Given that love is unconditional when these kids are concerned, I cannot help but come back to this startling and endearing thought:  my overriding emotion where this boy is concerned is pride.  Overflowing, overwhelming, immense pride in all that he is achieving.  I hope one day he believes me when I tell him:

Eldest… I am PROUD of you!!



My little rant yesterday seems to have hit a few chords – and I have to say I do love to get comments here, so don’t be shy!

I have been busy in the last few days trying to rationalise Little Man’s various special needs.  We have been hobbling along managing his care for the last ten years, and I have hit something of a wall.  As lovely as his professionals are, they are failing him because they are being lazy.  They each look to their speciality, and try to find the simplest answer to a rather complicated little person.  And the thought of getting together doesn’t seem to have entered any of their heads.

Enough is enough.  I don’t know how or when, but I’m getting them around a table, even if it’s a virtual one aided by skype or some such technology.  And I’m leading it.  Oooh, that’s going to get some heads buzzing!!!!  They are not going to like that one little bit.  But you see, this is the extent of the situation:

 

 

Tom's professionals

Even if you can’t read the tiny writing (I just can’t spend hours figuring out how to turn a powerpoint diagram into a picture file wordpress likes I’m afraid!), know that the centre circle is my darling boy.  Each and every other circle represents a professional.  The few that have dashed lines are ones that have not seen him for a while or have discharged him… and as I write this I’ve realised that I’ve missed one out.  There are 20 – 25 of these circles.

So I somehow need to sit all of these people down at the same time so that they all hear what I have to say simultaneously, and so that they are given the opportunity to brainstorm why my little boy is not well and how best to look after him!

For each of these circles I’ve created a diagram with existing diagnoses and treatment, name of professionals and frequency of visits, together with the questions I’d like answered in order to make him better.  It’s been a labour of love, and has required a certain will of iron.  I’m going to give each of them the full document in the next few weeks and months with a covering letter so that they can prepare themselves.  And I am not wearing rose tinted glasses.  If we are able to make this meeting happen in the next year it will be a miracle!

As an aside, this document is also going into Tom’s new EHCP… the government’s new system for special needs.  I’m hoping that the weight of the really lovely people driving this new system in our area will make a difference.

And to finish, this is what Tom would like his life to look like:

Tom

Hope you can read it… As ever, I’ll publish, then make lots of little changes as to how it looks!



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