I’m sure I sometimes appear flighty, scatty, all over the place and full of mad cap ideas.
To some extent that’s probably true, but I think it is mostly indicative of the fact that I do my utmost to avoid closing doors. And in the last few years I think I’ve been trying to carve doors out of solid walls, if not sheer rock! Because when life is as wonderfully chaotic as mine is and often hemmed in by my four walls due to circumstance, opportunities just don’t come knocking at your door!
A few years ago I embarked on a new path in the hope of becoming a dietitian. This summer I achieved step one towards that goal – after a couple of years of home study I sat my exams and got an A grade in A level Biology… some good smug pride going on there 🙂
In that plan, this year was all about applying to universities. I haven’t given up on that, but it’s becoming clear that it is simply not all plain sailing. The course is extremely full time with a great deal of personal study, and Little is not very well. We are already looking at reducing his school timetable due to fatigue. If that happens, uni plans are scuppered. So I am waiting a little in limbo…
In the meantime, I have found myself involved in a wonderful organisation which brings together the voices of parent carers such as me in a formal way: Family Voice. Lo and behold, I find myself being offered jobs… how seriously is a matter of opinion, but it’s interesting to think that I could pursue those opportunities. Questions around identity, dreams, aspirations are buzzing around my head, tempered with the practicalities of being Mother to three amazing but (in their own words) “needy” children.
And then out of the blue, I find a potential chance to return to something akin to my past life… could I be a music teacher again? Unexpectedly I find myself thinking yes…
Doors to new paths appear without warning, and sometimes they don’t look like doors. Maybe it’s a good thing to push against a solid wall in the hope that it may open? I find myself wondering if this is why I dislike full stops, but find myself using the ellipsis so frequently (I freely admit, rather too frequently!)…
So I’m scattering my thoughts and options, and giving flight to my ambitions. My mad cap is probably a bonnet or a pretty fascinator, but you can be sure it’s eccentric!
He’s looking well!
He’s looking much the same as ever.
He’s exhausted all the time.
He can’t survive without a tube.
But you’re a doctor, you know these things… so?
mmm… well he’s ok, but we’re struggling with the same things
Little, how are you?
He’s never felt any different… so this is normal to him, of course his answer is “fine”
But let him speak, allow him his voice,
because contradicting that “fine” is like digging a hole for him to fall into.
The consultation that follows will be wishy-washy, blurry, with few decisions and at best a fuzzy plan to follow up in a few months, reliant on referrals that may or may not come to pass, because the doctor feels no sense of urgency.
Why? Because, perhaps, I have not been able to convey the urgency?
Because, perhaps, I was not strong enough, with Little in the room to stop her at the start and tell her, “no, he is not looking well”.
Maybe we could do things differently…
Before the appointment, an agreement that Little should not be present.
His physical body will not advance his care,
but many things must be discussed that could be psychologically damaging for him to hear.
How is Little?
He is much the same as usual.
He is tired, all the time, so much so that at eleven years old he needs to be in bed by 6.30pm.
He is often yellow, though this is improved when using medium chain fats in his diet.
His yellow colouring worsens with fatigue.
He is still dependent on four tube feeds a day plus an overnight feed.
He is ill, in other words, every single day, and has been for the last eleven years.
It’s also becoming clear that these problem are slowly getting worse.
What would you like to change?
I would like us to ask questions that might lead to answers.
So I would like a metabolic specialist involved because (insert my research).
I would like us to accept that tube weaning is not possible given our current knowledge.
I would like Little’s symptoms to be considered afresh, and with a sense of urgency.
I would like you to realise that even if you are new to Little, we are new to this world.
Our journey is already 11 years old.
I would like you to acknowledge the psychological damage that Little has undergone.
I would like to explore how we can help him.
I would like you to remember three things, each and every time you see or speak to me:
I am not your patient, I am your patient’s advocate.
I am a professional mother, with far more time, effort and motivation to find answers for this particular child than you have in your working life.
If you have my child’s best interests at heart, you need me on your team.
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.
I love words.
I mean, I REALLY love words.
I love the sound they make in my ears, the feel of them in my mouth, the sensations they provoke in me. I love that some words simply cannot be translated – one of my all time favourite words is “gemütlich”. The closest approximation is “cosy”, but that simply isn’t enough.
It struck me today that I am not a visual thinker. I find it almost impossible to visualise a box, for example, out of my imagination. Now, give me the word “box”, and the concept is there in my head, but so much fuller than a picture…
In my head, the one word box gives me these pictures and so many more, all encapsulated in three, pretty, sturdy, delightful little letters. If pushed to find an image of a word, I often find myself visualising the letters… in lovely fonts or a simply Times New Roman…
This last week has seen a lot of talk and actions around words, and images. There has been much talk about the power of words, and about what rights we have. There has been much fear, much pain and suffering and much thought.
I have far too little knowledge to comment specifically on the events in France this last week. I feel close to it through my family, yet distant too – my life is restricted and I have less space for tragedies at a distance than I should? wish? need?
What I do know is that I have three children, two of them on the autistic spectrum, and that fifteen years as their mother has taught me that words are extremely powerful. And as the wielder of that power I had better be prepared to deal with the consequences of the words I choose to use. As the wielder of that power it is my responsibility and mine alone to ensure that my words are understood as I mean them to be understood.
There is no room for “oh but you misunderstood” in my life.
There is no room for “but it was only a silly little drawing”.
There is no room for “you should have realised I don’t agree with you”.
There is no room for “I can say what I want”.
I use words to communicate. To help the person in front of me understand what I am thinking, what I am hoping for, what I need.
And words, those wonderful, magical words are also the greatest traitors. Taking away any language barrier, any cultural barrier, any barrier of age, or gender, or creed, or race, words betray us all the time.
Most arguments can be sourced in the treachery of those fey words. “You say tomahto, I say tomayto”… You say “not now”, I hear, “never”. You say “I like you”, I hear “I love you”. How many times have you been headlong into an impassioned discussion only to realise that you had been on the same side, but not realised it?
How many times have you been hurt by someone else’s words? And of those times, how many times did the other intend to hurt you? I’m guessing far fewer than those who intended pain.
So words, and communication between human beings is a treacherous, quicksand of a thing. Words can make you love, and they can make you hate.
If you use words, you must be prepared for their consequences. And you must be prepared for the fact that they may have consequences you never foresaw.
In that light, the notion that freedom of expression allows any of us to “say anything we want to” is puerile. It is simplistic, it is selfish, it is “spoilt”. It is not worthy of people who feel impassioned about human rights, about equality, about freedom.
With great power comes great responsibility…
All of us who use words are empowered, and as such we must be held responsible.
Choose your words carefully. I’d love to hear your thoughts.. but I’d love them to be shared in kindness and respect…
To those of you who broke me this last school year – knowingly or not, willingly or not…
I don’t know why you felt so threatened by me.
I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.
I don’t really know what led you to choose to ignore me so utterly.
I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.
But all those things you must surely have felt, for there is no other reason for your actions. And the year is over now, and I and my Little Man will not be returning.
But know this: you broke me. I will mend and I will heal, but you broke me.
All summer long, your voices have been dictating how I care for this little boy. Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair. Those voices who maintained that he ate exactly like other children. Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day. The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night. The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors. Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.
All of you… I know that you had good intentions. I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that). And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything. [You forgot that Little Man has many, many professionals, and that the only person they have in common is me. You forgot that they see him once in a blue moon, and that I care for him daily. You should not have forgotten that.]
And so, you broke me. Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs. You see, you told me in those voices, in those actions, that I was wrong and you were right. And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.
I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.
So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down. And the really insane thing is that I have been listening to you. We have been using his wheelchair about 25% as much as my gut tells me to. I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front). I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…). I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.
And now, half way through the summer, Little Man is yellow, bordering on grey. He is in pain most of the time. Leg pain mostly, some arm pain and tummy ache and regular headaches. He is TIRED… so, so tired. His eyes are huge, and dark. His memory is hugely affected, and he is struggling to process all that is happening. That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.
And you won’t see that. Because you are tucked away enjoying your summer holiday. Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway). Sad to say, I don’t think you’d even see it if you were standing here right now.
You can’t change what happened this last year. You will not have an opportunity to do things differently with Little Man, or with me. I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.
But I will heal and mend, and as I do so will my care of Little Man. I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time. And we make a new start with new staff for whom a little boy such as him is wonderfully normal.
So you, in all of this? If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?
I would ask that you remember we parents of special children are always on your side. We want to help you because if you can meet our children’s needs, they will be happy and they will thrive. I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).
Listen to me. Listen to the mother or father who comes to you for help, or to give you information about their child. There is a reason for their need to communicate. And armed with information you can be better… better teachers, better assistants, better adults.
I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately. In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs. If you ignore the parent, the child WILL suffer.
I would ask you to put to one side for a moment your ideas of failure and success. I would ask you to remember that you can only do as much as you can do within your environment. And that environment, and your help simply may not be enough.
I would ask you to remember that sometimes, giving up is necessary for a child to succeed. Sometimes, success is having the courage to say – this child needs something different.
I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me. Mine is but one rather little voice, shouting, crying, singing for my children. There are many who would shout me down because what I sing is inconvenient.
You can choose – to listen to my song, and join with me to support it. Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.
You have so much more power than you realise. You need to know that you broke me. You need to know that I will mend. You need to listen, to care and to be so, so watchful of what you say and how you say it. Mothers like me do not need to be broken. We may appear strong, but really we are very, very fragile… a little like eggshells.
You have so much more power than you realise. Use it wisely, and carefully. Please.
A couple of weeks ago, I posted a status on Facebook laced with more than a little desperation:
The beauty of this system lies in its simplicity: by charting his emotions throughout the day using just three smiley faces, 5 shades of colour and nine or ten emotion words, he is becoming emotionally self aware. He is also seeing his success, and notices how often he is calm, or happy. The rare moments of “proud” are celebrated for hours after the event. And he is able to see visually how quickly he can overcome the moments of anger (which are still considerable in their intensity).
I can see it too, which makes it a good deal easier to remain calm and help him through those moments.
Sweet Girl is using the system… with less obvious success, but I have hope that in the long term it will be of great value to her.
Long may this island of peace last!