untangling this thing we call life…

Category Archives: mental health


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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Food. 

I think about it ALL the time. Not because I’m hungry but because my Little is not.

Don’t get me wrong, 9 times out of 10 he will eat chocolate if given the chance, or sweets. And fairly often he will ask for crisps or chips, or even a crumpet. But half way through that crumpet, he is full. If I were to push (when he was younger), he would continue to try eating and vomit.

We do not know why he does not get hungry, and doctors haven’t even begun to listen to me about that aspect of his feeding difficulty. They are stuck at the gut – is it too slow, is it diseased? (Maybe, and no are the answers to those questions)

My reality is that he is eleven years old and has been utterly reliant on tube feeding since he was 8 months old. I am a tubie mum veteran.

I have ridden the waves of vomit using the various and wondrous concoctions given to him by the pharmaceutical companies (excuse me, the dietitians, who aren’t one little bit biased by those companies – no they’re not!). I have seen him fade away into nothingness and look a ghastly mixture of grey and yellow. I have watched as doctor followed nurse, followed doctor try to stick a cannula into a vein in order to rehydrate him. Knowing that they needed to stop sticking him with needles, knowing that we were creating trauma, and knowing that they could not stop because with every moment that passed, he needed fluid more, and with every moment that passed his dry little body was narrowing his veins.

I have stood against the medics, taken my gut instincts into my hands, learned more than any  mother should ever need know about food, and calories, and fats and proteins and vitamins and minerals and digestion, and I have advocated for that child. I have watched a dietitian write in bold red letters: Mother going against medical advice.

And I have made that Little food, and blended it and sieved it and worked and worked to get enough goodness into the tiniest volume so that his body would not reject it.

I have spent each and every day of the past ten years feeding him every two or three hours, and overnight. We have a magic pump that allows me to sleep, and feeds him drip by drip so that the precious liquid stays inside, and hopefully translates to growth and energy. I have been up more times that I can remember to deal with the various alarms that pump gives off. Now, each time I hear that beep when out and about, my heart starts pumping and my body stands to attention. It takes a few minutes to realise that mine is not the attention being screamed for, that the pump in question is another child’s.

I make Little’s food every day or two. I have a recipe, but I question myself ALL the time. Do I need to rethink it, to recalculate? Have I missed something, should I be doing more, has his growth been enough to justify a change?

I think about food ALL the time.

I am not part of a team. We have doctors and nurses, and wonderful school teachers, and they largely follow my lead. I have no dietitian. Yet. I have no one to work with, to figure out a way forward.

Because this is an odd situation. The general consensus of “they” is that he will one day be tube free. He is mobile and intelligent and there is no physical reason that we can find to explain the need of tube feeding. So no medic will say or write that Little is “tube fed” in a permanent manner. I struggle to get them to acknowledge “for the foreseeable future”. In spite of tube weaning failure on a number of occasions.

Don’t get me wrong, I am not looking for a doom laden approach. But if he is one day to be tube free, we should have a team. It should include me. It should also include professionals who have experience in this area – the psychology of tube weaning is what has me ranting today, so a psychologist; a dietitian; a doctor. And as a team we should make a plan. I know that plan A is very unlikely to work, but as Eldest’s head of care wrote to me this week,

“If Plan A doesn’t work, then we’ll move to Plan B, then C, then D, then E and so on until we find a plan that works”

I have no plan. I do not have the ability, experience or knowledge to make a plan, and as Little’s mother I am the last person able to put any plan into practice. Most people will understand that mother and pre-adolescent coming head to head on such issues is a recipe for disaster.

Little hates his tube food.

Little hates thinking about food.

Little hates the feeling of his stomach filling.

Little fights me whenever food comes up – so breakfast, snack, lunch, snack, dinner. Whining, shouting, screaming.

I can avoid some fights when it comes to oral food. I make it his choice, but then he is miserable because even if his stomach is not hungry, his mouth is and he does not know what he feels like, and cannot find anything to satisfy that feeling. I suspect he feels failure too.

How can I avoid the fights about tube food? That is what keeps him healthy and alive.

He HATES tube food. It’s boring, it takes too long (about 3 minutes), there’s no point, it doesn’t do him any good. And anyway, he’s in hospital “all the time” as it is, so it wouldn’t make any difference if he was ill. He’s tired all the time, so it wouldn’t make any difference if he didn’t eat.

This is the discourse he proclaims. The confusion, misunderstanding, frustration, anxiety and anger are growing as he is getting older.

We should have had a team years ago. Years. Ago. Specifically to avoid This.

I am patient. My children have taught me not to raise my voice. They have taught me to accept their emotions, both bad and good. But I find myself raising that voice when Little screams at me that I am mean and stinky and evil because I want to feed him.



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’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”.

 

 

 



Tonight…

I am that little boat among the storm of my beautiful Children’s emotions…

When the sun comes out, that little boat will bask in its warmth.



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.



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