Happy Surrender

 

Photo by Bernard Hermant on Unsplash

Before I publish any of this, I will have to ask three wonderful young people’s permission to do so. As I wrote a little while ago, my story is not merely my own to share, and I must take their feelings into account before I make anything public. So why do I feel it important to write any of this? Our story has been difficult, sometimes (maybe often) traumatic, and I have had many reasons for sharing some of it as we have journeyed along our little life. The two main ones were the following:

1. Writing was and continues to be therapeutic for me. It is a coping strategy, I suppose, and while some things may be difficult to read, I hope that I have always written with respect and integrity. I have always believed in the power of honesty and truth, and I have always been aware that truth looks different depending on your perspective. I hope that if there are things that people object to in my writing, they will at least know that it was and is “my” story and in that, it is true and honest. There have been times when sharing that with the universe was the only way I knew how to keep upright and deal with the everyday.

2. When things were tough, I felt utterly isolated. But somewhere, I did know that I was doing my best, and that my parenting was not the core problem in our lives. If that was indeed the case, then there must be other families experiencing not only the challenges of daily life with special needs, but also the isolation. I suppose I wanted in some small way to break that isolation. To have the courage to say, “This is happening to us. We are doing all we can, but it feels hopeless and I feel a failure.” And hopefully to hear back from others that they felt the same. I also hoped to hear from parents who had been where I was, and who could maybe reassure me that there was hope.

I did find that community, and it continues to exist. Through the amazing work of people like Mark Brown, about whom I wrote recently, and Yvonne Newbold, there is growing awareness of the hidden reality of life as a special needs parent and more importantly, how a child with such needs experiences childhood. Children branded “naughty” and “disruptive” (some of the kinder words that have been used) are slowly becoming recognised as deeply distressed and traumatised, and there is a small section of society that is beginning to realise that we all have a duty of compassion towards those children and young people.

The reason that I feel compelled to write now is that my amazing Offspring should not be immortalised in their childhood pain and suffering. They are more than that, and they are all slowly heading into young adulthood with optimism and (I hope) a knowledge that their inner hopes and fears have been heard.

So I would like to immortalise where we are now and the progress we have all made. I would like to stop and reflect on the lessons we as parents have learned, and hope that the Offspring forgive the mistakes we made along the way.

I also, desperately, want to give hope. To the families that are wading through despair and darkness, who love their children but have no idea how to help them in the day to day, I would like to say, “Have hope. Things can get so much better. For you, but most importantly, for them. Hang in there. Keep loving them. Keep listening to them. Keep fighting for them. They are so utterly worth your efforts.”

So this is where we are now… without specifics for they are unnecessary, but in truth and honesty as I see it:

We are living as a happy family, all under one roof. After years of residential school, our amazing First came home and has been a joy to live with. He is caring and compassionate. He is stubborn, and is looking out on the precipice of adulthood with a more than healthy dose of fear, but I think and hope that he knows we are there to support him in the ways that he needs. I think he knows that we will always have his back. He is increasingly showing, or discovering that he has rather brilliant “brothering” skills, and in that he is helping not only his siblings, but us as parents too.

I have learned that I need to listen to him. That his difficulties in engaging with people, or leaving the house are real and MUST be respected. In return, as we have given him that respect, he has been more able to act and move forward with his life. He will go at his own pace (in fact, as we all do) and I have no doubt that he will do very well indeed. I sometimes forget. I sometimes rush him, and that is never helpful. But that is MY problem to deal with. I have to remember that timelines imposed on young people are societal constructs that never take into account an individual’s capacity, resilience or indeed wishes. This young man may need a little extra time, but he is becoming a wonderful person. Anyone who knows him agrees… (though he may not!).

My only Daughter is home. After years of investing her whole life into “doing the right thing”, and not being heard by those who were there to help her (sadly and shamefully including me at times), she reached her limit as we all do in such circumstances. It still amazes me that she was able to hold on for so long. We have had and are having a difficult year. As a result of the complicated nature of her life and that lack of responsive “listening”, her mental health has spiralled somewhat out of control and she is now grappling with a mind that is “messy” (her words).

I don’t want to minimise what she is going through, nor do I want to publicise it. So I will go no further.

However. This amazing young woman is now learning from home. She is taking her time to heal, to learn to live in her body and her mind, and I am more proud of her than I can say. We are all working so very hard to hear her, to respond appropriately to her, and to let her know that we have heard. She, on her side, is working to believe that. Not an easy task when your needs have been ignored or brushed aside for so many years.

She is the best daughter a mother could have. It wouldn’t be right to say that she is my best friend. I don’t think we are “friends”. I think we are a mother and a daughter who see each other as individual people, and who rather like what they see. She is, as ever, a brilliant sister, but she is trying to let her brothers be the “looker-afterers” to some extent. Like the First, she is caring and compassionate. She puts her friends before herself. She “sees” people: their wonder and their pain, their weakness and their strength. She is quite, quite wonderful.

The Youngest has made the most enormous strides in the last year. Again, I have to attribute this in part to the fact that I made myself listen. He has taken more control over such things as his bedtime (and oh my goodness is it difficult even as an adult to make yourself go to bed early when you are tired!), and his eating.

After a lifetime of severe eating difficulties, he has managed a beautiful, fragile and phenomenal transition to the world of oral eating. When I look back over the past six months, I can see that we were communicating amazingly well and yet using no words. At no point until the summer did we sit down and decide anything about food. I just sat back and gave up control.

And in time, he started to eat a little… and then a little more. And I changed what food I gave him via tube, without really knowing why, without really questioning anything. The only thing I did was ask him to know his weight. And he happily took to weighing himself regularly and telling me. Little by little, he began to take charge of his own eating. So much so that in June or July (I cannot remember, which in itself is pretty amazing) we stopped tube feeding altogether. I felt a confidence in him that was new and unexplained, but I decided to heed it.

Youngest has been eating orally now for about two months. He has even made the decision to take his meds orally. He is clear that there should be no conversation about removing his button for some time to come (even next summer feels too soon for him), and so we do not talk about it. We do talk about food. Every day. Because it is still very difficult. But in a great many ways, it has become HIS problem, that he comes to me for help with.

Maybe the biggest change in me in the last year or two has been a surrender of sorts. A realisation that these three small humans may well be “unfinished”, but that they are complete humans nevertheless. And as such, I owe them as much respect as I owe any adult. As I write this, I do not know whether they will allow me to publish it. I deeply hope so, and in many ways, this is the most vulnerable piece of writing I have ever done because I am putting it in their hands.

What wonderful, amazing hands they are, though! Whether they say yes or no, I could not be prouder of them, or love them more. I hope, for those families who are finding daily life so difficult, that they will allow me to share. Not so much my happy ending, because really it is only their beginning, but whatever we call it because it is really, deeply happy.

Tread carefully…

I am fortunate enough to live on the edge of a lovely piece of managed woodland, or “common”. The management of this piece of land means that we have areas of woods, meadows, paths for walkers and their dogs and bridleways for horses and their riders. Each year the team make changes – coppicing old trees, cutting the old when needed and tidying the undergrowth. Last autumn they made some major changes in order to clear land for butterfly glades. It is a beautiful spot, allowing for hours and hours of changing scenery as one walks through. As a dog walker, I am daily amazed by the good luck that brought me here and allows me such varied walks without ever having to get into my car. Shadow the dog is more grateful for that than he is aware of. He is not a fan of the automobile…

I was struck yesterday by the changes of the seasons as they pertain to the terrain upon which I tread. Mere months ago, the common was waterlogged after weeks of persistent rain. Intrepid walkers armed with sturdy gumboots and sticks with which to guard against falls had continued to explore the footpaths, while most of them stuck to the harder bridleways. I joined the brave a few times, having invested in some wonderfully warm and solid boots. While Shadow revelled in the uneven land and enjoyed the opportunity to explore the woodland either side of the main path, I struggled. With each footstep I sunk to the ankle and had to suck my foot out of a wet and sticky mass of soil and clay. Before long, I had abandoned such explorations and retreated to the easier path. The ground at that time was malleable, changeable and moulded to whatever impact was thrown upon it.

As summer dried the earth, all the marks of those walkers became fixed, seemingly in stone. The clay hardened into crags and crevices such that not a step could be taken without risk of a turned ankle. That same act of walking that had been so determined by the walker was now determined solely by the ground. Each in turn was implacable and dominant. In the wet of the winter months, the walker controlled (albeit stickily and in lurches and slow sinking steps) and formed the contours of the path. In the dry of the summer, those contours were now controlling the steps of the same walker.

Yesterday, I noticed that as we continued walking, so those miniature valleys and mountains has turned to rolling hills and flattened recesses. Indeed, in the most trodden paths, the terrain was now almost completely flat and walking had become an easy, pleasurable act.

Often, we think that our actions are fixed. They can have good or bad consequences, but those consequences are dependent on the action itself.

It now occurs to me that actions must absolutely be paired with their environment for us to have any idea of the consequence that may follow. That the intricacies of our impact upon our world are far greater than we think, and that we must therefore tread with greater caution than we might originally have considered.

More than anything else in my life, I parent. I have the charge of three amazing human beings as they grow from infancy to childhood, from adolescence to adulthood. And while I have always known that each of them requires different acts of parenting from me because they are so individual, I have often considered that one type of behaviour on my part would have similar consequences on each of them. So while I know that one is unable to act upon a demand, another relishes the structure of instruction. And so I “act” differently accordingly.

What I have been less aware of is that my actions will have very different and lasting consequences depending on the time, the weather, the environment, the mental health of the individual I am with. In particular, I have been less aware than I should have of the long-term impact of some decisions.

For a good few years, Girl thrived in a special school. The staff cared for her very well and she was able to discover much about herself and grow well. The space away from home was also positive.

At some point, things changed. I suspect many small things changed, but life became impassable. Much like the beginning of summer along my paths, walking was treacherous, and for Girl, every part of living became treacherous. I, stubbornly, hopefully, maybe even blindly, considered that this phase would pass, that it was most likely due to changes within her due to puberty or some such issue.

I did not realise then what I am beginning to see now, that the same actions do not always have the same consequence. For whatever complex series of conditions, the school’s actions and behaviours ceased to mould and help and began to harm and traumatise.

There is rarely an easy solution when it comes to humans, and those humans transitioning from childhood to adulthood have a particularly challenging journey to make. Parenting them becomes an obstacle course with no path and no light. Some will seek to train and control their young ones into becoming an adult in their image. I choose to model the kind of adult behaviour I admire. I choose respect of this young human for whom I have great admiration. I choose to accept that their current state is challenging and painful. And I choose to tread with greatest care so as to cause the least possible suffering.

My walk through that woodland yesterday reminded me that the same steps we take every day can be easy or difficult, but can cause damage or repair, all dependent on the day, the weather, and how carefully we tread.

Consent is not about being right

Following on from my recent post… I did mention it was a big topic, and it plays a huge role in my life.

I touched on the fact that one must have the capacity to give consent to a given situation. If you have ever seen the brilliance that is the “cup of tea” video, you will remember that if someone is unconscious, they cannot give consent… hopefully you get the drift. Today’s topic, once again, is not about sex but the principle applies.

Youngest (I have always referred to him as Little, but as a teenager I feel the term no longer truly applies – regardless of his diminutive size!) has a severe feeding difficulty. This is not to be confused with an eating disorder.

All his life, he has found eating to be extremely difficult, and we have never properly known why. Some facts are clear:

• He never had a rooting reflex (the snuffling around that an infant does to find a nipple – any human breast will do for the reflex to work).
• He had symptoms of reflux, but no formal diagnosis.
• He showed signs of slow motility (the time it takes for food to make its way through the body).
• He vomited. All. The. Time. Sooo much Volume of Vomit. Awful stuff.
• As he got older and we gave him real food, the vomit slowed, but he often feels sick, very soon after the start of a meal.
• He is rarely hungry (this used to make surgery days much easier, as the fasting was a walk in the park for him).

This feeding difficulty was so severe that at 8 months old, he had to have a naso-gastric tube inserted to feed him. Why?

Because he was refusing consent to eat.

Nobody could get a bottle, spoon, droplet near his mouth without him arching his back, screaming and spitting anything out of his mouth immediately. As an infant, he was using all the tools at his disposal to say NO.

He was 8 months old. He did not have the capacity to understand why we were insisting on feeding him, and he certainly did not have the capacity to understand the consequences of not eating. So we (parents, doctors) decided that in his best interests, he would need a feeding tube.

At the time, it was an easy decision. But it did not end his pain, or the vomiting. The only thing that ended were the interminable fights with a wriggling, weakening infant. It took him longer to realise that the syringe of formula (I refuse and will always refuse to call it “milk”… see any of my posts on blended diet) was responsible for pain.

Youngest has been tube fed for fifteen years. At the age of 16 months, the NG tube was switched to a gastrostomy – a more permanent feeding tube whereby a hole is made from the stomach to the skin of the abdomen, and a silicon tube is placed there for feeding.

Since he has been old enough to communicate, he has made it absolutely clear that he hates being tube fed. He also hates eating. We have worked with tube weaning teams, we have worked with speech therapists and play therapists. For my money, he simply lacked an instinct to eat. Whatever the reason, eating has always been difficult but we have been extremely lucky to have the tube in order to continue keeping him alive.

There have been many occasions when he shouted his protest, when he withdrew his consent. But he was and is a child, and in his best interests, we overcame the shouts and there were times (rare, but still) when he was fed against his wishes.

Force feeding is a very very uncomfortable issue. We usually hear about it with regards to protesters or prisoners. Famously the Suffragettes went on hunger strike, and many of them were force fed using tubes down the throat.

[Little aside. I considered adding a picture depicting such force feeding. Decided against it… it makes me ill.]

More recently, some prisoners have used hunger strike in protest, and the ethics of force feeding have been debated. From my little research, there are very few instances where force feeding is permitted. Certain extreme forms of anorexia come into this, but there is no clear cut view, not least because feeding in this way can be extremely dangerous. Really, the only time it is considered is if the person in question has been shown to lack mental capacity (remember I mentioned this last time?).

In fact, force feeding is really a kind of assault, and should be considered very, very carefully.

And now we come to the crux of my thinkings… If force feeding, imposing food on my sixteen year old, is assault…

Why is it acceptable to impose food on my fifteen year old without his consent?

Of fourteen?

Ten?

Seven?

Three?

At what age do we consider that an act that will be felt as an assault is acceptable “because it is in the best interests” and “because he is a child”.

Because here is a nugget in the world of consent:

Someone who has the mental capacity to give consent, also has the mental capacity to refuse it. And that is okay.

We are allowed to make poor decisions. In fact, much of our personal growth comes from making poor decisions and experiencing the consequences.

Of course, most of us make poor decisions that have few long-lasting consequences, or the consequences are not terrible.

Take a tattoo… it is a permanent act, that a good few people eventually regret. For the most part, one’s life and health are not threatened by having a tattoo, and for the most part, the images are inoffensive enough to be an amusing anecdote.

What if the tattoo is a symbol of an extremist movement that you flirted with as a youngster. When you are forty, with young children and you have a swastika tattooed across your shoulder, what are the consequences?

So at eighteen, should the tattoo artist have refused? No, because you, an adult, gave informed consent. You, an adult, made a poor decision. And you, an adult, had to learn to live with the consequences. This is life.

If at forty you are diagnosed with cancer and make an informed choice to refuse treatment, many will think you mad, but you are entitled to that decision. And we may not like it, but we tend to accept it.

When it comes to more vulnerable people, however, we are not so willing to relinquish control. We are not so willing to allow them their independence, their right to consent, their humanity. Uncomfortable thought…

It has become quite clear to me that I must now consider consent almost daily when it comes to Youngest. He has to step up and make responsible choices (the like of which few young people of his age are required to do), because he does have the capacity to consent in most of these cases, and therefore has the right to do so.

In practical terms, this means a couple of things.

First: I will never “plug” in his feeding tube overnight without him consenting to it beforehand. I made that promise a few weeks ago and firmly believe it to be the right decision.

Second: we have to talk. More. A lot. Help him understand how important it is to eat. Help him understand that consequences happen later. Help him understand each upcoming surgery or medical treatment that might hurt, and why we feel they are necessary. Because gone are the days when he submits to our decision.

Now he gets to consent. And that, my dears, is hard work. Hard work, but oh so worthwhile. To be heard, to be seen, to have choice. All these things are valuable and we need to find a way to treat children with that same value, before they turn sixteen.

Maybe we need to think of consent as the starting point, and manage that pesky “in the best interests of the child” (which so often means, against his wishes) more carefully.

It’s a brave new world, Grown-Ups, if we are to treat Children as Humans in the way we expect to be treated… Have a think upon that…

 

Consent. Small Word, Big, BIG topic

And we’re not talking about sex!

I need to talk about consent, because I have three children who are growing up but who still need support. And that is just the tip of the iceberg.

We have children, and we look after them. We care for them, we protect them, we raise them. And at some point, they become in some way autonomous.

We appear to have determined the age of autonomy, or consent, when it comes to sexuality: 16. Language around consent is almost exclusively reserved for sexual behaviour, and there is surprisingly little talk of emotional maturity, of the fact that human beings rarely develop according to legal descriptions.

At the same time as we determine a sixteen year old to be sexually mature, we do not grant them the same privilege in other aspects of their lives. In fact, the years between 16 and 18 years are frighteningly grey areas in terms of rights and responsibilities. I say frightening, because there is scope for so much confusion.

Let me share an example…

Your sixteen year old is disillusioned with school and wants to go to work. Is this legally possible? Many parents will search the internet for the answer, which should surely be a simple yes or no?

England

You can leave school on the last Friday in June if you’ll be 16 by the end of the summer holidays.

You must then do one of the following until you’re 18:

• stay in full-time education, for example at a college
• start an apprenticeship or traineeship
• spend 20 hours or more a week working or volunteering, while in part-time education or training

source: www.gov.uk

The law is different in other parts of the UK, which simply state that you may leave school when you are 16 (dates are specified), but make no mention of further requirements for education or training.

 

Now consider this:

Childline, a highly respected and recognised charity gives the following advice in answer to the same question:

Work

Age 13

This is the youngest age you can get a part-time job. Unless you’re working in certain areas for example TV, modelling or theatre.

Age 16

You can get a full-time job. The NSPCC recommends this as a minimum age that you can work as a babysitter.

Find out more about getting a job.

source: childline.org.uk

So actually, I don’t know the answer. It seems no-one really does.

Faced with this kind of contradiction, it is at least a relief to know where we stand with sexual consent I suppose!?

But really, what I want to get down to is that consent is reliant on capacity. The capacity to understand the information that is relevant to the question. The capacity to retain that information. The capacity to foresee consequences, weigh the information up and make an informed decision. And finally, the capacity to communicate that decision.

This list is not made up. It comes from the Mental Capacity Act of 2005 and is used primarily by health professionals to ensure that patients are able to give informed consent to treatment. It is often talked of in the world of young people and adults with additional needs.

Without this capacity, consent is not possible because to agree to something you must first understand it.

My question now is this:

If my 15 year old has the capacity to understand and give informed consent about a medical procedure, can he then refuse consent?

(Spoiler alert: yes he can… though serious discussions will be had).

Question 2:

If my 15 year old has the capacity to understand a situation at school, experiences trauma from it and refuses to consent to education in that setting, does she have the right to do so?

In other words, does she have the right to protect herself?

…..?

I don’t have the correct legal answer to this. I’m not sure anyone does. It might make an interesting legal experiment. But I’m interested in your opinions, your thoughts because this is far more a moral and ethical question than a legal one. Please comment… I can’t do this one on my own.

 

Time is our salvation

One of my dearest friends, a lady to whom I look to for guidance, reassurance and guidance, and all-out awesome Dudette, Yvonne Newbold, often says this of our children with additional needs:

“Keep them alive til twenty-five!”

Because I know and love her, and she is Wise, I have always taken on faith that she is right. But because I am not good at faith, and because I Need to Know the Future and Control All Things, I have struggled to think, to hope that it could apply to my family.

Funny thing… I’m pretty sure she’s right. And I’m hoping that my little revelation can maybe provide reassurance and hope to some of you whose Offspring are younger than mine.

My kids are awesome. Really quite brilliant. They have also been Challenging and often Failed by the System.

[Do you notice I appear to be capitalising a lot? Hmm. strange. Must be significant in some way.]

Until this last year, we have tried and tried to make them fit the mould. By which I mean we have tried to educate them in the way that our society expects children to be educated. And it really hasn’t worked. Even with the extra support and resources of specialist school. Because even those schools are restricted and restrained by the national curriculum and the “we know better” attitude that those in authority have. Never mind that some children simply cannot learn those things in those ways in that timeline.

This year something magical happened.

Time came through for us in a major way.

The two Eldest, for whom school simply does not work, are now both over 16 years old. And that, my friends, is a game-changer here in the UK. The National Curriculum no longer applies, so a strait-jacket is removed.

In the normal scheme of things, our British young people are subjected to national accredited examinations (GCSEs) at 16 years old. A ludicrous set of qualifications by pretty much any other nation’s reckoning. But recently, our government decided that they were exceedingly important, and should actually be made more important and harder to pass. The articles I have read this year regarding children’s mental health and these exams is enough to make anyone’s face ashen (though not, apparently, our government ministers).

In the normal scheme of things, you must pass at least 5 GCSEs with good grades in order to access any further education, leading to university two years later, then a (decent) job. The message is not so much a decent job as any job at all. The message given to young teenagers (from about age 11 nowadays) is that GCSEs are KEY to any success in life.

Eleven years old.

Good GCSEs or a failed life.

Oh my… there’s a message.

And we buy into it as parents too!! Even up until last October, I did everything I could to keep my breaking Girl going to school because it was this all-important GCSE year!

She didn’t make it. So she has no GCSEs.

And do you know something? The world did not end. In fact, the world has blossomed with opportunity. The world is her oyster! We all realised that exams are absolutely a path to adult life, but adult life will happen with or without them. And the success that comes with that is largely up to her to define, then realise.

With time, my Challenging Darlings are becoming mature, kind, compassionate, responsible young adults. They have limitations, but then show me anyone who does not.

With Time, I am realising that the world and life have a tendency to happen. If they are alive, of course.

So it became critical to remove school from their lives, because school was at risk of killing them. This sounds dramatic, but is not. We deal in dark humour in our family, and suicide is a topic that we have to talk about… we talk about those thoughts that happen when life feels too hard. Luckily, they are mostly in the past for now.

“Keep them alive till twenty-five”

And they will thrive…

Thank you Yvonne, with all my heart.

When special school is not special enough

September is here, and news abounds of returns to school. My Facebook feed is alive with parental anxiety about uniforms not arrived, of queues at the shoe shop, of images of school bags and lunchboxes. Because I have a somewhat unusual group of FB friends, only about one in twenty of these posts is a happy one.

Most of the parents and children I know dread this time of year. Anxiety of a different kind lives here. Anxiety due to unmet additional needs that cause “school refusal” (another post to come on that subject alone!). Anxiety caused by trauma, sometimes from early childhood, sadly all too frequently from school itself. For families affected by these issues, school mornings are horrendous. We watch our children suffer – these are not tired teenagers who need to go to bed earlier. These are traumatised, deeply distressed people whom we are forcing into an environment that will exacerbate their anxiety. We force them into that environment because we parents are forced to do so by the school, the authorities. It is truly unbearable, and eventually it breaks our children, and it breaks us.

This year for me is different. This year, only the child who is happy in school is going. This is not actually a new situation, but it is the first time we are beginning the school year in this way… and the relief is palpable. We are smiling at the thought of learning. We are smiling at the thought that days when depression, anxiety or trauma take over, we will simply let them pass.

My amazing daughter spent four years at a very special school. I thought very highly of the school and I still believe that the staff were caring and did their best. It appears, however, that Darling Girl was putting on a brave front but finding it impossible to be heard. The last year was tough.

She managed to sit one GCSE, a year early as a practice run, and she got to the end of the school year. She was not in a good state, and she was far iller than I realised. Last September was our worst one yet. She was so desperately tired and anxiety was peaking before term even started. Yet she tried. She put everything she had into going to school, going to class, listening to the constant caution from teachers about the importance of year 11 and those GCSEs.

She lasted 6 weeks.

Then she broke.

We were asked to collect her from school as they could no longer keep her safe. Whether I go into detail or not will depend on her, and on me. Reliving that kind of trauma is hard and there needs to be a good reason for doing so. For today, I simply need to contextualise where we find ourselves today.

My daughter was once again failed by CAMHS, who told her that other young people were iller than she was – they had actually attempted suicide, rather than threaten it (which to my ears rather sounds like encouragement…). They told her she was well enough for school. They told her that she had no diagnosable mental health condition. This in spite of her articulate explanation of how terribly unwell she was and how she was no longer coping with anything (including sleeping, eating, hygiene etc).

Fortunately, we were able to fund a private psychiatrist. She was diagnosed with mixed anxiety and depressive disorder with period of elation and dissociation. He did not dismiss PTSD, but the complexity of that illness made diagnosis unwise at that point.

She has not been back to school. School puts her at risk.

It took a lot of work, but we now have a plan that is written into her EHCP (Education, Health and Care Plan). The local authority have agreed that she cannot attend school and must be Educated Other Than At School, and they have agreed to fund this via a Personal Budget (PB). This means that I plan her education, I arrange for it to be delivered in a way that she can access, and they fund it. That also means that I must produce accounts, copy receipts, justify spending etc… It is by no means an easy option.

Dependent on interest here, I am happy to share more details of that process, and the type of education that we have been able to agree, but it may be a little too boring and specific for my little audience here! Let me know in the comments if this is something that interests you!!

We spent the last 8 months or so learning how to live again. Therapy is central to her recovery, and our week revolves around that. We went pottery painting weekly! Through that, she learnt to get up, get dressed and leave the house. It became absolutely clear that creativity is key to progress, and this was just right. Slowly, we added some art, and some drama. I must plan a post later regarding social farming because that was another revelation.

Since November 2017, my beautiful, highly intelligent, sixteen year old daughter has done no academic work. And it has absolutely been the best, the only decision. So she, unlike all her peers, has no GCSEs to her name. And after all that panic during the previous two years, we have realised that life goes on. The sky did not fall on our heads, and her future has not been blighted. The anxiety and panic that we were made to feel was really all for nought.

She continues to be very ill. But she has made some amazing friends in the home educating community and has many, many good moments.

Next week, we begin anew. We are keeping therapy and art at the centre of her life, but maths, English, history, science and French are joining the timetable. And we are to have a timetable! We considered complete flexibility, but she has told me that she would like some structure. We will take things one week, one day at a time.

Because the only thing that truly matters is that she is as well as she can be, that she is happy and that she is emotionally able. Until that happens, any other learning is simply impossible. But if she is mentally and emotionally well, she has the capacity to forge her own path and make of her life what she wishes for it.

So to all of you about to head into a new school year, I wish you luck. I hope yours is the happy kind of anxiety, and if not I hope you have access to some good support.

If your child is struggling with school, there are some amazing support groups on Facebook. A particular favourite of mine is “Not Fine in School…”

I have also explored the myriad Home Education groups and found a great deal of support and solace there. Home education is not an easy option, and is certainly not for everyone. I firmly believe no parent should be forced into it. But I also think that if you are strongly considering it because your child is deeply unhappy, it is probably worth a shot. It is certainly worth exploration. (Don’t just take my word for it and jump in – I don’t know you, and it may be the worst decision in the world for you!!!!!)

I know I have been away for a long time, and my audience probably numbers about 0.5, but I am interested in you too! How about a little poll so that I can see who you are?

I expect it is clear from what I have written. I and my lovely Girl are both so excited that she is not at school this year! We can’t wait to learn, to plan and to see what lies ahead!

 

Hello again!

It’s been a long long time since I was here, and I have missed this space!

I have missed writing, I have missed sharing, I have missed the expansion of my life that the blogging world affords me.

So why did I stop writing?

Initially the answer is very simple… I wrote so much about my children, who are so central to my life, and they started to be grown. As many bloggers before me, I realised that I was not merely sharing my story, but theirs too.

Eldest does not like this. At all. So other than very minor mentions, he will no longer figure. All I would like to say is that he is back living at home, and is growing into a lovely young man. The pain and anguish I so frequently felt years ago has turned out to be unnecessary in the greater scheme of things.

Girl has only last week given explicit permission to include her in my writing because she tells me that she is part of my story, and that she has nothing to be ashamed of. She is, as so often, absolutely right.

Little has no strong feelings one way or the other, but is becoming reticent to allow his photograph to be taken. Thus are adolescents made.

So in the last couple of years I have floundered because I have not known how to navigate the need to tell my story, to share the positives of these growing young people and at the same time respect their feelings and privacy.

I am going to try. I will almost certainly get it wrong. Repeatedly. All I can say is that I have the utmost respect for them. I truly believe they are wonderful people, and all I share is done with love and kindness. If things sound tough sometimes, that is because I am also human and life is tough. I hope they forgive my need to tell my story if I do get it wrong. And I hope they realise that their part in my story is a constant source of awe and amazement to me.

On trust, independence, identity and parenting…

At what age do we consider a human person to be an individual with a unique identity, with a sense of self sufficiency to make decisions regarding their emotions, their clothing style, hair choices, whether or not to pierce their ears?

As parents, I think many of us instil in our children the notion that they can earn our trust, that this is laudable and achievable and that by behaving in a certain way they will be able to make decisions that we will respect. And yet, how often do we then turn around and tell them they are too young to know what they are doing, what they are feeling? How often did we hear or have we said, “you are too young to know what being in love is”?

I began my parenting journey 17 years ago and it was always clear on my mind that these children were simply small people, young, inexperienced, not fully cooked, but people nevertheless. And I absolutely want to see them go out into the world on their own terms, to follow their passions.

When they were 2, I encouraged them to choose what they would wear (though I shopped!!). There were some interesting choices at times, but there was also always discussion. A dressing up outfit might be ok for a rainy home day, but maybe not so good when out and about. While we all love wellies and a raincoat, it’s probably not the ideal choice in 30 degree weather…

I have extraordinary children. They are all outspoken, yet respectful.  They are kind and tolerant of everyone they meet (though that tolerance tends to waiver when faced with intolerance, stupidity or meanness). They are clear about their likes and dislikes and expect those to be respected as they respect the likes and dislikes of others.

When I look at them, I see three wonderful people. The older two in particular have pretty fully formed personalities. They are not naïve: they know themselves to be young, they know they are likely to change. And yet, they also know who they are, what they stand for, what they yearn for.

My daughter, aged 15, has been speaking to us for well over a year about her wish to shave her hair. It was a decision that she came to from many different angles, for many different reasons that she shared with us throughout that year. One element was her desire to do something in order to raise funds that would help scientists in their research into cancer. Another is a more personal one around her sense of identity.

We shared many, many discussions that were calm, happy and without a sense of urgency. At no point did she try to manipulate us or push us into a decision. At no point did she ever intimate that she could do this without permission. Of course she could have, but actually she doesn’t need to. She has no need to scurry into a position of rebellion because she is a person who is utterly respected in our home. As such, she talks, we listen and we all think and give time a chance to do its thing.

This amazing fifteen year old also went to speak to her head teacher. She wanted to explain why she wanted to do this, but also that she was aware that it might break school rules, that it might upset some staff or pupils. Fifteen years old.

She has a wonderful head teacher who listened. Who took the time to discuss it with her and told her that she needed to talk about it to other staff before making a decision. My wonderful Girl simply understood and waited. The answer was that she should be allowed to do this, but that it would be valuable for her to speak to the whole school in order to prepare the other students for a big change and to explain her reasons.

In other words, my daughter spoke to the adults in her life with respect and consideration, and was rewarded with the same behaviour in return.

She made a considered and considerate choice.

Then, bless her cotton socks, she informed me that I would be cutting all her hair off!! It turns out that hair is a strangely emotional thing and that we are pretty conditioned to the notion that girls have long hair! While utterly respecting her decision, being the one to wield the scissors was quite challenging!

The deed is done. This beautiful, smart, kind young lady has raised £300 to date and is sending her hair to the Little Princess Trust so that a child who has no hair can have a beautiful real hair wig. And the biggest surprise to me is that my daughter has emerged a little like a butterfly! A weight has been lifted from her. She tells me that she looks in the mirror and for the first in a very long time does not see an impostor. She is completely beautiful.

We, her father and I, her grandparents, struggled emotionally with the notion that she should cut off her hair. Hair that, let’s face it, grows constantly, pretty fast. But our histories, our biases, our comfort zones made us feel uneasy, uncomfortable. It might have been easy to consider her too young, too immature to make such a decision…

I refuse to do that. My daughter is a remarkable person, of whom I’m inordinately proud. I’m a little proud to have had a little input into this very special young lady, but mostly I love the fact that I would choose her as a friend in a heartbeat. Above all I trust her completely. She knows that I am there for her to talk to about anything, but she also knows that I trust her. And that has given her tremendous confidence, and possibly a sense of responsibility that means I know I have no reason not to afford her my trust.

Feel free to go and help raise her fundraising total! It would mean the world to her!

https://www.justgiving.com/fundraising/kesia-symcox

Specialist schools are more than parking places

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.

 

To eat, or not to eat… on Tube Feeding Awareness Week 2015

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.