untangling this thing we call life…

Category Archives: disability


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.

 

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take_life_one_cup_of_tea_at_a_time_poster-r89922c11c94248558e03c755378040f3_rjc_8byvr_1024I’m sitting here, reeling once again from the shock of diagnosis.

The strange thing is that this is actually not a new diagnosis, nor is it a serious one. In Little’s life, this is but a mere blip. Turns out, diagnosis shock is real, regardless of the seriousness of the dx…

And yet, having gone through the sadly typical journey of diagnosing him myself, getting righteously angry at the slip up, seeing the doctor and having a formal diagnosis and now a course of action, I’m now shaking and teary. Emotions are funny old things.

Having a child as complicated as Little means that more mundane childhood issues sink to the bottom of the pile. And the follow up visits with the paediatrician simply don’t address them.

Ten years ago, almost to the day he received a diagnosis of virally induced asthma. This was following a bad spell of croup which has left him in hospital – again.

We were given a preventative inhaler, with very minor instructions, and that was the end of that. No asthma action plan, no checking on inhaler technique, no reviews… in fact, it was as though the diagnosis was so minor as to be irrelevant.

Over the years, croup reared its head, we always ended up in hospital, ill for days, losing weight. I always mentioned the asthma, but it was never heard, and I didn’t push because it didn’t feel serious or even quite real.

This week, the boy has been coughing fit to burst. We haven’t slept for nights, he has hardly eaten a thing. We’ve seen doctors, had steroids, ended up in hospital (luckily not in-patient) and the cough just goes on and on, only stopping after using his salbutamol inhaler.

In desperation, I googled.

Guess what?? Asthma doesn’t always come in wheezy form! It can also be “just” coughing.

And Little fits the symptoms absolutely perfectly.

We are now in a protocol, in a system. We have a suitable gizmo for his inhaler, we have spare inhalers. We have an appointment with the asthma nurse, and will have an action plan and all the paraphernalia needed at school. In other words, we finally have a proper diagnosis that brings with it a plan of action.

I’m hugely relieved.

I’m also feeling dreadfully guilty that had I kept on top of this, we would no doubt have avoided countless hospital admissions, and that this week he would have been spared a lot of distress and pain.

There’s no one to blame, and everyone. This was picked up early, really well, but was never actioned!

We finally have a care coordinator at our main paeds hospital, whom we are due to meet next week. This is typical of the reasons we need a doctor pulling everything together. I may be on the ball, I may do a lot of research, but I am no replacement for a doctor with medical training and experience.

Now I’m off to make a cup of tea, allow myself a few tears to process all this then get to the laundry to have the house ready for the boarders to come home for their half term…



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.



I’m quite certain that every parent has at some point had dealings with a child whose behaviour is utterly out of order.  I’m equally certain that every parent has at some time or other felt clobbered by their beloved offspring.

I can’t remember a day since Eldest was 10 months old, that one or other of the three of them hasn’t at some point left me feeling clobbered.  I often talk about my patched up heart (this old post sums things up!) but I particularly hate the cuts and bruises that my heart suffers at the hands of my Offspring.

And so, the other day, a Facebook post made me think of a hands on way to try and make a point…

Sweet Girl and I went to the shops this afternoon before Little Man came home from school.  We stopped at the charity shop and chose two beautiful china plates – one that Sweet Girl would love, one that Little Man would desire.  On the way home we popped into another shop to purchase some glue.

Oh, did those children love those plates!!!  “Can we have our dinner using them, Mummy?”, cried Little Man.

No.

They reluctantly followed my instructions, and wrapped the plates in paper, then slipped them into plastic bags…

I brought out the hammer.

And unwillingly, unhappily, they smashed their plates.

Oh yes, I’m that mean.

Little Man was in tears at the sight of the pieces, Sweet Girl was holding back.   They both felt really sorry for the loss of their plates.  We used that “sorry” word a lot.

And I got the glue, and we started to put those pieces back together.

It was tricky – I am not a china plate restorer, and my glue was sufficient for the purposes of the lesson, but not of the “super” variety.

The plates are “whole” once again, but not the same as they were before.

“Sorry” puts pieces back.  Time allows the glue to set.

But once you smash something, it will never be the same again…

20140509_180829 20140509_172103



I don’t especially aspire to “normal”… never have.  I like quirky, I like unique, I like being different and those who are different.

I also take the meaning of the word “normal” as it should be – “usual, typical, expected”.  When talking to others, I often refer to those growth charts mothers will be all too familiar with from baby days – those curves within which our infants sit and progress, and to which we cling, hoping our babies do not “fall off” them, as medical professionals imply that such a fall would be dire.

Baby growth charts

My Little Man sits firmly about an inch lower than the lowest of these curves: clearly, unequivocably, unjudgmentally out of the normal.  It follows, therefore, that his growth is not normal.  My goodness, how people react when I utter those words – as though I had spoken some unimaginably dreadful thing.  But it is simple – the “norm” describes the vast majority of the population – 99% roughly.  If you are outside that margin in whatever is being described, then you are by simple definition not normal. (As a little aside, I’ve rarely seen any particular advantage in being “normal”….)

Similarly, I think I have a fairly balanced perspective on “normal” behaviour in children.  My personal experience was probably on the “good” side, but I had the joy of babysitting some “challenging” children, and in teaching I was familiar with a wide range of adolescent attitudes and behaviours, and privy to their parents’ challenges.

I’m an analyst and I have a tendency to judge my choices, behaviours and thoughts very harshly.  In dealing with my lovely children, I have fairly high expectations of them in terms of manners and behaviour, but their various difficulties and our quirky experience of family life have taught me that allowances sometimes have to be made; that children need to rebel; that times change and expectations sometimes have to change with them….. etc, etc, etc…  I know deep within my core that to expect anything close to perfection is simply unrealistic.

I know!!!

I know that teenagers can be surly and rude.

I know that they can rebel.

I know that many teens spend their lives in their rooms in front of computer screens.

I know that they do not go to sleep till the small wee hours.

I know.

 

But.

You all have to stop telling me these things when I am at my wits’ end trying to get my teenager back to school.  You have to stop telling me that it is normal for a little boy to have a tantrum simply because you ask him to wear a coat.  You have to stop telling me that it is normal for a preteen girl to huff and puff in exasperation when asked to take her clothes upstairs.

Why do you have to stop?  After all, you’re quite right.  Teen boys don’t want to go back to school.  Ten year olds don’t want to wear coats when the sun is out.  Pre teen girls are in their very essence huffy.

Well this is why:

Last week, we began preparing a young man for his return to school three days before needed.  Plans were made that he agreed to, and on the day when he decided against those plans, gentle support was the only way to go.  I cannot emphasise enough how few strategies we have.  Direct confrontation is not an option – it leads to fear, anxiety, anger, aggression and violence.  In fact, the only option we have is time, and gentle persuasion.  And time.  In the event, Darling Man had to take one and a half days off work, a carer was needed to look after the two Littles, and us two adults had to be intensely WITH Eldest until midnight, and then all day the following day to support him in his return.  Since then, there have been many phone calls to and from and with massive support from school staff, he is slowly beginning to settle back into school.  Term has been in full swing for ten days now, and he is still not in class full time.  So next time you tell me it’s normal to struggle to get your teen to school, think again – how often do you experience this?

Little Man, who is constantly, continuously, heart breakingly exhausted, was due to have a friend to lunch.  Said friend lives up our road.  We walked out of the house, and I asked him to wear a jacket.  In spite of the sunshine, it is still chilly and his health is such that a light jacket is simply the appropriate clothing.  This simple request led to screaming, shouting, refusal in the middle of the road for ten minutes, after which I carried him back into the house.  He began to hit me and kick, so Dad stepped in.  More punching, kicking and throwing whatever was to hand… and all the time shouting “let go of me”….. we were not touching him but he seemed unable to process that.  This state of play lasted for nearly an hour, during which we were able to steer him into his room.  Screams eventually turned to sobs, and a good while later he emerged full of remorse, and completely worn out.  So next time you tell me that little boys have tantrums, think again – how many of your ten year olds lose control so utterly over such a trivial matter?  And how many of them are then unable to do anything but sit on the sofa for the remainder of the day?

I’m going to give you the pre teen girl.  The difference with mine I suspect is the emotional intensity of her emotions, but mostly the emotional intensity of the aftermath.  She comes to her senses more easily and quickly than the average teeny girl I think… But topples straight into Guilt, which then needs huge support to work past.

Parenting’s not easy, not for anyone.  And I’ve no doubt that for parents of children who lie in the norm of childhood behaivour, some days can feel everlasting, and life can sometimes feel really hard.

But truly… until you’ve experienced the intensity of reaction and behaviour that our “special”, “out of the norm” children experience and force us parents to experience, you must stop telling me, us, that “all children do that, it’s normal”.

 

 

 



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