untangling this thing we call life…
I love words.
This sentence, or sentiment, is a running them on here, and those wonderful lot of you who have hung around to read the sometimes strange meanderings of my mind will recognise it as one of my key characteristics.
Being bilingual, with a spattering of little bits of understanding regarding a few other languages, I am keenly aware of the fact that a language is a reflection of a culture, an identity shared by those who share it. And while the majority of each language stands up to translation, there are always a number of words or expressions that simply get lost.
On the whole, this does not cause any problems, though it may give you an inkling of how delicately difficult the job of a diplomatic translator must be. I cannot say that I am in any real anguish as a result of this difficulty, yet every now and again I find myself wishing passionately that there was a word in English that was the equivalent of a French one (or German, or Hungarian, or Italian, or, or, or…).
What tends to happen is that I am expressing a thought or feeling, either in my head or to a friend, and immediately, the correct word pops in… but in a different language.
This is almost never because I have “forgotten” the English word. Language doesn’t appear to work that way. No. This happens because English does not have a word that is as precise in expressing what I want as the word that has popped up.
If I am alone, I do not even falter in my silent monologue. The meaning is paramount, and the mix of languages is at best noted as interesting before my mind moves on. If my company is also bilingual and I have found a word that is understood by them, again I do not falter. We may laugh about it later, and we may have an engaging discussion about the missing equivalent in English, but the meaning is expressed and long convoluted descriptions are unnecessary. (The same happens if I am speaking French with English and others… though I am most comfortable in English due to my cultural surroundings and life experience. I am a blender in many ways, and I have blended happily into my southern England life.)
The same conversation is interrupted rudely, however, when I am speaking with an English-only speaker. I tend to use the word I want, then pause to explain myself. Luckily, those closest to me know me well enough to go with the flow! Those who know me less tend to look a little bewildered and try to keep up with the ensuing ramble that spews out of my mouth!
Occasionally, serendipity plays a part, and I make links between words, often from different languages, and I create a new one. One that just perfectly depicts how I feel. And this fills me with intense joy, because what can possibly be better than communicating with complete perfection a feeling that till now has no real word?
Just this wonderful thing happened this week.
You may have noticed, if you have been following my writing, that I share my life with a lovely husband and three teenagers. Two of them are at home all the time with relatively significant mental health difficulties that require a great deal of patience, understanding and compassion. They wrestle inner monsters daily, and this often leads them to “explode” with feelings of frustration, anger and anguish expressed as best they can. They need to be rid of these feelings, or at least the flares that manage to escape their heads. And for the flares to leave them, they must be taken somewhere else. The somewhere else is most often my ears, my head, my heart… For their sake, I need to take what they say on board and find the capacity to process it while remembering the feelings are not mine. The latter is important, or I would drown in emotional pain that I cannot control.
Seeing loved ones suffer in such a way is awful. Heart-breaking, soul-destroying, exhausting, wearing, draining, sharp as a sword painful. And yet, the fact that I “see” their pain goes some way to helping them… so it must be done.
There is an expression in French that describes rather well this experience of taking on someone else’s anger, or pain, or rant…
“J’encaisse”
Literally, this means “I put in a chest”. The more formal definition has now come to mean “cashing up” in financial terms, but a more familiar definition is as follows:
“Recevoir un mauvais traitement, subir”
“To receive bad treatment, to suffer” (actually, subir and suffer are not great translations, but that is a whole other three paragraphs, so we will accept it as sufficient for today)
I was lucky enough to spend three years of my adolescence living in a completely bilingual Geneva. During this time, my friends and I frequently moved from one language to the next and back, mid-sentence, sometimes mid-word. It was liberating and fun, and a nightmare when it came to writing essays when we had to struggle to reign in our new found freedom. We often created new words by “directly” translating words rather than switch language… and this is what I found myself doing this week while trying to explain “encaisser” to my Darling Husband:
[Hang on a moment… we need trumpets! And a drum roll… and a string quartet, orchestra, choir?? No, seriously, you may not get it immediately, but I assure you, genius is about to land on your retina…]
Encaisser…. is…. Inchesting.
Oh. Yes.
Put in a chest. Let those awful, negative emotions hit you right in the solar plexus as they do. Allow that pain because it is the only thing you can do. Notice that you actually have a chest in your chest, ready to receive them… Put those emotions in that chest and close it so they cannot get back out to that suffering person out there in front of you. And hold them in there until you can digest them…
Ingest:
the process of taking food, drink, or another substance into the body by swallowing or absorbing it.
the process of absorbing information.
Injest:
absorb the non-funny joke that I am making about emotional pain!!
Inchest:
the process of taking negative emotions or information into the body by absorbing it (through the chest/heart)
There it is… my word. And it is a magical one, because if I do it well (making sure I digest or dichest those emotions so as not to be weighed down by them), I alleviate suffering, and I avoid meltdowns and conflict at home.
It is hard, and it is painful and uncomfortable. But when I name it, and realise what I am doing, it becomes “merely” uncomfortable, mingled with hopeful that I have helped…
PS… It has come to my notice that this whole topic might upset some who care for me! No!!! This is a Good. It is a process, it is managed, and while I have not illustrated it for fear of being crude, I “dichest” all those monsters that are not mine, and at worst expel them. At best, I may even make unicorn rainbow parps!
Today, I fought with my daughter’s monsters. Nobody won, and everybody lost.
Fortunately, hope remains, and we will find each other again because we talk and we love each other, and we respect each other.
Nevertheless… today was a tough day.
Darling Girl suffers from complex mental health difficulties. Their specific nature is irrelevant, and none of these difficulties can detract from her amazing personality. She is kind, compassionate, intelligent and articulate. She is strong and resilient, funny and sarcastic. She makes the best kind of friend: loyal, loving, available and responsive.
And she lives with monsters in her mind. Who make her doubt everything about herself and the world around her. It is no surprise, then, that she can appear to be angry or surly, or any number of other unpleasant things.
Most of the time, I meet these monsters with calm and patience because I know they are simply hiding my lovely, sad or frightened little girl.
Today I was tired. Today, I was not strong enough. So today, I put on my boxing gloves and I confronted the monsters.
How silly.
And ineffective.
Because the monsters, for one, are ephemeral. No amount of boxing gloves, literal or metaphorical will meet their marks. The monsters simply fade into vapour.
Behind the vapour is that frightened little girl…
And so the boxing gloves hit her. [Not real boxing!!! They were all words…]
Today, I fought my daughter’s monsters, but really I fought her. She fought back as best she could, but she cannot fight, because the monsters fight her all the time.
Tonight, I will hold her and tell her how terribly sorry I am. We will hug, and probably cry, and probably laugh. We will remember how much we are there for each other. She will remember that I am merely human, and I will remember what a valiant warrior she is in the war for her Self.
And tomorrow will be better. Because we will forgive each other… that’s just what we do, and that is enough, and that is everything.
I often ask my children to share something good and something bad about their day.
It helps them find something good if they had a bad day, and it gives them permission to vent and process anything negative.
It’s also a more focused question that “how was your day?” which in my house is a recipe for disaster.
I have had a busy week, and while I have a million things simmering in my mind that I wish to share, none are ready. The writing is there, but is in serious need of editing!!
So in the meantime, I will share something good and something bad, but more than anything I would love to hear yours… So tell me something good and something bad about today…
Today, three people went out of their way to be kind to me… fairy dust kind of magic!
Today, I received a speeding fine, which threw me into panic mode (all is well, but grrr…)
Your turn please!!
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.
About eighteen months ago, Youngest was taken over by anxiety and confusion in addition to his fairly traumatic co-existence with the medical profession and some learning difficulties. This complex combination of factors led to something which is far more common and prevalent in the SEND world, but has to date been a source of deep shame and isolation for families like mine: SEND (special education needs and disabilities) VCB (violent and challenging behaviour.
When our children are overwhelmed or overcome by the world around them, their levels of anxiety rise to incomprehensible levels. At this point, their brain is programmed to do only one thing: run or fight. All the blood supply is redirected to the large muscles of the legs and arms, and two things shut down completely: the pre-frontal cortex, which allows you to think and communicate; and the digestion. Many people in this high state of anxiety will vomit precisely because of this shut down. More commonly, children who already have difficulties processing their surroundings got into “fight” mode. And they become violent, most often with those they love the most.
I suppose unsurprisingly, there is enormous judgement about this behaviour if spotted in public. However, it most frequently occurs behind closed doors, and parents are left desperate and convinced they are doing something wrong. Worse, if and when they talk about the situation, professionals point to their parenting skills, and add blame to the shame that both parent and child already feel about this.
I have experienced SEND VCB with all three of my children at one time or another. I can without exception point to a period of intense and overwhelming remorse for their actions once the storm had passed. And then the remorse and shame they felt caused such self-hatred that they would turn that violence inwards. I have to ask those professionals that may have advised me in the past, and those that advise families today: how does adding blame and guilt benefit anyone in this situation?
Slowly, there is a growing movement to raise awareness about this, especially within the NHS, thanks to my wonderful friend, Yvonne Newbold.
My experience has led me to change my parenting style quite dramatically, and many would disagree. I suppose the only thing I can point to is the calm and quiet in my house, the happy dynamics between three very different siblings, and the increasing empathy and willingness they have to help out.
And we consider the children equal in value to the adults. Which means some difficult conversations at times… why should Mum and Dad watch TV in the sitting room at night rather than a child play on the PS4 (at the moment, because I say so… but there is scope and maybe need for more change and compromise).
For Youngest, we needed something additional, something that simply won’t be possible for many families. We needed a dog.
This was a huge decision for me. I am not a “dog” person, and I was well aware that all the work would be done by me. I thought about it for a long time, knowing absolutely that it would be hugely beneficial for him, but really concerned at the impact on me and the rest of the family. Girl loved the idea, Eldest hated it. Husband was not keen on the change and additional work.
I had looked into assistance dogs, but this clearly was impossible for all sorts of reasons. So I reasoned that if we got a puppy, we could train him or her to manage Youngest’s needs.
Serendipity stepped in, and we found ourselves meeting an amazing family who were expecting their first litter of labradors. Shadow was born on the 2nd of January, 2017, and we met him only days later. Then weekly until he was able to come home. Youngest was speechless with joy, which is no mean feat given his seemingly endless capacity for chitter chatter.
Puppy training has been hard work, and I am incredibly happy to see him grow up and settle down. I do find the relentlessness of dog walking and dog company tiring, but I also know that those walks have done me a lot of good, and it turns out that I can be (sort of) a dog person.
Because Shadow has changed our lives. Since coming home in March 2017, Shadow has been Youngest’s best friend. And Youngest has experienced only two meltdowns in all that time. Shadow comforts him when he is sad, provides a comfortable cushion when he is ill or exhausted, and his mere presence seems to be enough to avoid those levels of anxiety that trigger VCB.
If you are affected by SEND VCB.. as a parent, family member, sibling, professional, go and look around Yvonne’s site. There is crucially important information there that will change the way you work and live with our young people.
I originally wrote this post in my very first blog,”The Goings-on of my little world” , in June 2009. Since then, Mark has continued affecting more and more families like mine in life-changing positive ways. He is no longer an NHS nurse, but works as an independent special needs advisor, and I am so proud to share that a new centre to help these families will soon be opened as part of his work. He continues to be my guardian angel, because that is who he is. Regardless that I am no longer officially on his books, he continues to see as as one of “his families”. His kindness, courage, wisdom and compassion know no bounds. He ceaselessly inspires and amazes me, and I have no way to truly convey my gratitude to how he helped our family.
The Special Help 4 Special Needs Centre will open on October 27th 2018 at 1pm. The address is 195 Godstone Road, Whyteleafe CR3 0EL.
If you are widely known on the internet and in the SEND community, please share this far and wide. If you have contacts in the local or national press, likewise. Let’s try and finally get Mark the recognition and support he so richly deserves.
And then earlier this year I met a real, solid, guardian angel. He does not have wings, and he will be the first to say that he does not really fit the “angelic” description. But he has been my guardian angel in the last few months more than I could ever have hoped or prayed for. He has laughed with me in good times, held my hand in bad times, and when I fell a great height into a pit of despair and hopelessness, he caught me. He refused to drop me, and made me believe that I could get up again, stand straight and continue to fight the battles that were coming my way.
My guardian angel’s name is Mark Brown.
Many people in the “disabled” community know him, either because he comes into their homes to help them help their children, or because they hear him talk at meetings. The sex education talk tickled many of us mothers whose children do not understand the world in a conventional manner – no space for innuendos and subtleties!!!
The outreach teachers from various special schools know him well, as do the consultants at Epsom hospital. The question on everyone’s lips at the end of his talks is “How can we get referred to you?”.
Mark is an unsung hero. I and my little horde are known as one of “his families”. He cares for us with passion and professionalism, and raises the nursing profession to its highest level.
To my shame, and no doubt that of others, I have been so caught up in the difficulties of life that I have taken his help for granted these past few months. And I fear that the families he helps are all caught up in troubling, emotional and exhausting lives that leave little time to shout across the hilltops, “This nurse is my life raft! He makes it possible to live.”
To a small thank you, Mark only replies, “It’s my job.”.
I want to shout in the street, in the offices of bureaucrats everywhere in the NHS and other public services:
“Look at this man. Look at the dedication he pours into his work every single day. Look at the difference he makes to so many lives today, tomorrow and for the rest of their lives. Watch him with a child who does not know how to communicate. See how he enters their world, at their own pace, taking the time to find the special language that will move them forward.
See the care with which he gently pulls a family together, finding the weak spots others have missed. See the smile on a sister’s face as she realises she too can have some help.
Hear his honesty. Listen to him speak to parents about the future, one they never wanted to face but which must be dealt with. Hear him list the options, tell the optimism within the suddenly restricted world these parents dread.
Call him on the phone. Hear him answer, his voice always calm, always caring. See him move, drive, arrive to help. Watch him knock and enter, calling out a bright, “Hello!”, bringing the sunshine of hope along with him.
See him watch, and listen and wait for the tears to stop. Then see him pick up the telephone, and talk and talk until the men and women behind their desks agree to give the help. See him make a cup of tea, calm an autistic child and return to Mum, waiting for the storm to pass a little.
Follow him one day, to catch a glimpse of what he does. Follow him two days, to see the families he helps. Follow him a week, and learn how much he counts.
Then ask: why did we not know him before? What can we do to help him? How can we recognise the value of this man, his work, his time?”
Mark Brown. In his own words, a nurse. His work is with children and adults with learning disabilities. He is absolutely a professional.
Mark Brown. In the words of many of “his families”, a guardian angel. His work is with our children, disabled but no less human, no less worthwhile. His commitment to our children extends to our families, because “what is a child without his family?”. And so his work is with us, through the tears and the laughter, the bad times and the good. He cares. He is absolutely a Nurse.
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.
While I have been striving to write, and succeeding in some measure, I have not been awake enough this week to add to this blog. This one, in its current state, needs thought and care for all sorts of reasons. I have written once a day, of which I am truly proud, but it has mostly been fiction, and I have not spent any time editing. If you are interested in discovering the more whimsical aspect of my mind, please do pop in over at Imps Bely!
I was wanting to stay connected with you, however, and that led me to revisit some of my older posts. I wondered if they still rang true, and in truth I hope many did not.
I’m afraid that the world of special needs education and disability has not improved in the last decade. I fear that it has become harder to meet the needs of such children, and I fear for my children what life as an adult with additional needs will be like.
But for us as individuals, things are not the same. I wanted to share again this post, “You have so much more power than you realise” because it resonates with me on many levels.
Firstly… it reminds me of a time when Youngest was at his lowest ebb. When he was so tired that he was unable to get out of bed. When he was eating next to nothing, and when our parental worry levels were very very high. None of that is true right now. Currently, he is the child we worry least about. School staff work hand in hand with us to support him, and he is thriving. He has not had a tube feed in about two months and is maintaining his weight. It is a miraculous thing to watch. He still needs a wheelchair, but not constantly. So he and we have made progress.
Secondly… it reminds me of a very traumatic time when trust between me and school had vanished and I was left bereft and confused. That was sadly never resolved, but I have gone on to forge wonderful relationships with his current school. Again, really lovely progress.
Thirdly… and most sadly I think. In many ways, I could have written this a few weeks ago about another school, another child. And the words would have been so, so similar. I am still confused and bereft at how trust can disappear without warning, without explanation. And I still believe that teachers and school staff have far more power than they realise. They shape the way we parents think and behave far more than they think… sometimes for the good, but sometimes sadly, to the detriment of a vulnerable young person.
I wonder what you think. Does what I describe seem familiar to you? Have you experienced a similar situation? How did you deal with it?
Last week was the final week of the summer holidays. All was well and we were prepared for the start of the new school year, as unconventional as that looks for us this time around. And then this happened:
Monday: unexpected day out with Girl and Youngest. Lovely, until an upset causes Youngest to lose the plot and fatigue triggers Girl’s difficulties. We leave the gathering more sadly than we had hoped, but try and resurrect the day. We continue by train (despite everyone’s exhaustion) to Guildford for some essential Girl shopping. Lunch first though, for I am starving.
Oh my, the sensory overload of the food hall. The need to queue endlessly at McDonald’s because that is all Youngest can eat. The need to queue again for healthier food for the Girl and I for similar reasons. Both of them are visibly finding the environment exquisitely painful, but I know we all need to eat. We nearly abandon all hope and leave, but the thought of the train journey at this point keeps me going.
Shopping is achieved, including some Lego for a much needed family afternoon.
Train home… by the time we are home, everyone is on their knees and heading for Catatonia.
Actually, Monday was really successful 🙂
Tuesday Part 1: Two hours spent helping another mother with her son’s needs and the EHCP process. Phone calls are made, nobody answers so I leave messages. Emails sent in the hopes of replies. As heartbreaking a story as it is, I am more heartbroken that it does not shock me. This story should be so unusual as to make headlines news locally
“Mother and Son with Special Needs Failed by Local Authority!”.
If it were, the local press would have that headline or a variant every single day. How are we allowing this to be the case? How are we allowing families to be left so utterly alone to manage a process that essentially requires a degree level education and UN level diplomacy to get through successfully? How have we arrived at a time when a family in such desperate need is afraid to talk to the authorities for fear of being threatened or intimidated.
I leave, hoping that I have clarified things a little, hoping that I may have made a tiny positive difference. But I also leave angry, and exhausted and drained and so, so sad.
Tuesday Part 2: Phone call from Youngest’s taxi driver to tell me that our local authority has just cancelled his contract… one week before the start of term. Ordinarily, the transport team quote a minimum of ten working days to put in place a new driver. Ordinarily, the new provider must call me and arrange a “meet and greet” so that my vulnerable child will not feel too anxious, and more importantly the driver will be made aware of that child’ needs. Needless to say, I experience an adrenaline surge at the thought of such uncertainty which could all too easily turn a great school year into a catastrophe. I am serious: the success of a SEND educational placement is very precarious and such small things as these can send the dominoes flying.
Several phone calls and emails later, the local authority has been made aware that this is unacceptable and that I expect the situation to be resolved.
I am “managed” and promised a phone call on Friday once the tender process is finished and we know the new provider. “It may be the same one, anyway, Mrs. S”. Fuming, I end the call and get a little more information by calling said, lovely, provider. However, the tender process will run its course and there is nothing to be done until Thursday morning. I do email school letting them know of the problem.
Let’s remember here that the local authority so far has made no proactive move to inform me of any of this, in spite of their policy, live on the internet, to consult parents ahead of any change.
Phone down, computer away, I try to refocus my energies and seek the calm I felt yesterday… then the postman arrives.
Tuesday part 3: A letter from the same local authority, but this time social services. Threatening and intimidating. Telling me that I have made cash withdrawals without providing receipts, and far too many of them.
????????????????????????????????????????????????????????????????????????????????
Adrenaline surge number two. I check my online account (this is an account that allows me to pay for the carer that social services have assessed Youngest as needed). I have made no cash withdrawals (I knew that, they never got around to sending me the card, and I only do transfers anyway). Every payment request has been approved by them. Every payment request but one is accompanied by an uploaded copy of a receipt or invoice.
????????????????????????????????????????????????????????????????????????????????
But… threatening and intimidating letter and I just can’t call that number. So I call the social worker. Who only works Wednesday, Thursday and Friday.
Swallow the anxiety, slow the heart, there is nothing to be done. Anxiety and heart refuse to listen… they are not governed by the prefrontal cortex and basically tell it to go pluck a duck (or something to that effect).
Tuesday part 4: In preparation for a meeting tomorrow, I check Girl’s Education Budget Account as I will have invoices to pay shortly.
£0
No surprise, but more phone calls to make tomorrow. However, a few emails this evening to check if this is unique or whether families in similar circumstances are in the same boat. It seems that in our corner of our county, none of us have been paid yet.
Wednesday part 1: Phone call (s) to try and ensure that Girl’s Education money will be paid in, and exactly what the authority wants from me in terms of accounts etc… I spoke to a lovely new case officer who has the dubious pleasure of now having to deal with me for two of the Offspring. We focused on one thing today, with the promise of raising the others later in the week.
(I chose not to follow up, because frankly, there is only so much I can handle in one week.)
A second phone call to Youngest’s social worker to explain that I could not call the finance team without knowing why they had sent me the threatening letter. I am human, and there are moments when I simply “can’t”. I’ve learned through the years that I really must heed that feeling if I am to stay standing. For more on that particular topic see here… So I handed that task over to her. She was lovely, as so many front line staff at this authority are, and said she would look into it, but “not to worry”.
[Ha!! I scoff in the face of such a phrase!!! Me?? Not worry? When faced with uncertainty? But the intention was good…]
Wednesday part 2: What a lovely afternoon! Girl conquered her panic at the new, and we went to meet her potential, and now definite, French tutor.
When determining her curriculum for the year, she had expressed a strong desire to rediscover her first language. She was also able to tell me that she cannot learn from me. I was so happy to find someone that neither of us knows (this was quite important for all sorts of reasons), who is French, and who teaches in a really practical way.
Marine runs the French Club and teaches through games, baking and other activities, tailored to the needs of the individual. She was completely lovely and Girl immediately started relaxing. As fortune would have it, my phone rang at that moment with yet another urgent message from the local authority so I was removed from the “meet and greet”. Marine quite brilliantly took the opportunity to start a simple card game in French with Girl!
We came away really happy and ready to start lessons shortly!
Thursday part 1: Knowing that the taxi contract tendering process is happening that morning, I was rather on edge. I was not optimistic, but hope refuses to die, so when the phone rang from our lovely taxi company, I did not know how to feel… butterflies in the tummy, slight headache and queasiness.
They had lost the tender.
I told them that I would immediately call the local authority. This was not finished yet.
Rather than speak immediately to the assistant manager, I spoke to Youngest’s case officer. Again, a front line member of staff who is lovely, kind and understanding.
And who has no authority to make any decisions.
I had to get my grown-up voice on. My children often tease me, saying that I am “petticoating” the professionals. This is due to the fact that I favour full circle swing dresses in my daily life, and add a petticoat to the ensemble if I need to feel a little extra confidence. This happens when I go to meetings, but I have been known to don a petticoat if I have a particularly difficult phone call to make.
[Yes, you may laugh. Yes, it looks as ridiculous as it sounds. But it works for me!]
I left this lovely lady in no doubt as to the sincerity of my intent. I may well have mentioned the press.
And when I put the phone down, I had a little cry.
I hate being unkind. That lovely lady had nothing to do with any of these decisions. She had just come back to work from annual leave and was suddenly assailed with me petticoating her… based on my family’s reaction when they have heard these phone calls, I am not fun to be on the receiving end of!
I will put on my big girl pants and my petticoat and I will stand up for my children. As long and as often as I must. But I do not like it, and it is draining.
I was promised a phone call the following day, but once again there was talk of “managing my expectations”. This is a frequent phrase in my world and one which I am learning to hate. I explained that my expectations were that if I had not heard from the transport team by the 27th August, I expected to keep the same driver. This is far from unreasonable and I would not accept any other alternative.
Another rather restless night ensued.
Thursday part 2: Sometime interspersed with the taxi palaver, I received an email from Youngest’s social worker explaining that she had spoken to the finance team. Apparently the team have no concern whatsoever about my account, but others have been mis-spending and so they decided to send a letter to everyone!
I am still fuming about this. These are specific accounts which allow me to request a payment. I provide documentation to support my request and they then approve it (or not). I’m still unsure given this system how it is possible to mis-spend.
But mostly…. I did exactly what they asked, and they chose to spend money sending me a letter that did not apply to me, but caused huge anxiety! Grrr…. they will be hearing from me next week!
At least that is one issue put to bed!
Friday part 1: Email from Girl’s case officer explaining that money should be in my account within 2 weeks. Welcome news, though it will mean a few bills paid from savings in the meantime. What if, like many families, I did not have the savings to manage this gap? I wonder at their organisation often…
Friday part 2: I understand that people are busy… So I waited until 10am before calling the assistant manager about the famous taxi! She was not pleased.
There followed a surreal conversation where she told me she was unaware of any decisions. Yet she also told me she was sat next to Lovely Case Officer who surely must have told her about the tender decision. Roundabouts and excuses ensued to which I refused to listen. I simply asked her forthwith to call transport and fix the problem, for I would not be putting my son into a stranger’s car the following week. I will spare you the slightly gorier parts of the conversation.
Tick tock… at times, the clock moves far too slowly.
Twenty minutes later, the phone rang. “Youngest will be keeping the same driver”. Her tone implied that this was an inevitable conclusion and that I had made a mighty fuss over nothing. I thanked her profusely, several times, wished her a good day and weekend and heaved a sigh of relief.
The second I put down the telephone, it rang again: Tremendous Taxis was calling with a message:
“Good news! We jut got a call from the authority asking if we would do the route at the reduced price we bid. Of course we said yes!”
In the background, a lady I have come to know well at the firm shouted to me, “Well Done!!!!!”
I must conclude that without my calls, we would have been presented on Wednesday morning with an unknown car and driver. Not acceptable.
I have huge pleasure in announcing that our favourite taxi driver was on the doorstep at the allotted time, and that Youngest dove into the car with happy glee.
Throughout the same week, we managed the ups and downs of anxiety and depression paired with autism for two young people. We managed Youngest’s new determination to eat enough orally to avoid the tube. We prepared Girl for a week in Wales. We did the normal family and household “stuff”.
And while “interesting”, this week was a little shockingly rather normal…
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