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…
After all the battles, worries, stresses of helping three children navigate early childhood in spite of various disabilities; of clamouring at the doors of agencies whose role is to help support such children, but who are understandably all too aware of their budgets; of maintaining some kind of family “normal” and endeavouring to seek out little pockets of fun and Happy…
After all that, here we are:
All three children are Safe.
All three children are in an environment utterly suited to allow them to Thrive.
All is well.
[Just to be sure… the difficulties and needs have not vanished. They remain, and cause hiccups weekly, daily, sometimes hourly. But the external source of constant anxiety has gone, and we are experiencing something close to normal family life for the first time.]
One of the aspects of my character that has been most tested in the last decade is Trust. I am by nature an extremely trusting person, and also fiercely loyal. Once you have earned my trust, I will be utterly loyal to you even in the face of apparent difficulties and even betrayal. This has seen me bitten, and I have no idea whether it is a positive or negative aspect of my personality… it simply is.
So in this spirit, when the first raft of professionals entered my life, I trusted them. Each and every one had my Trust as a starting point. I’ve often been told that was and is naive. It is beyond my control, it simply is.
It will come as no surprise to any parent of special children that I have been battered as a result. A few months ago I sat in the paediatrician’s office in tears, telling her that I had become cynical and jaded, and that this above all else was breaking me.
I do think on the whole that I have retained my ability to Trust, but every now and again, I question myself. For someone as riddled with self doubt as I am, this is frankly exhausting.
A Child is struggling (no surprises!). From the outside, it would appear that school are doing very little, and showing very little concern for his abandonment of any pretence at learning.
I Trust. Everything in my being tells me that they care about that Child, and I know they have the experience to deal with him, so I Trust.
Until a day comes, as it did today, when self doubt enters the mix of legitimate anxiety and “special” management of the Child. Self doubt tells me that maybe I should be doing more. Self doubt asks me if school is doing what they should. Self doubt tells me that school have not been in touch for a few days, that I have not seen paperwork and plans. Self doubt tells me that I am a Fool to Trust.
And in voicing such doubts to friends, I am met with legitimate, understandable questions: maybe school should be doing this, and that and the other. After all, the Child must learn to do what is required etc…
Self doubt grows in strength, bringing with it its groupies, Panic, Anxiety and Tears.
Luckily, I know this pattern. I live with self doubt in uneasy truce, but I know his ways and I am ready.
I called the school.
And a simple fifteen minute conversation confirmed that Trust was right. That all the measures fed by years and years of experience are in place. That the Child is not Lost, that he is Cared for, Supported even though he may not like it, or realise it.
The call was a good one to make. I was able to speak of my need to feel a part of the Team again, and school agreed that they could help me with that. I allowed Trust to win, and I allowed school to reassure Me… to tell me that what I am doing (or not doing) is allowing them to best help the Child. That there are no magic wands, but that slowly and steadily we are on the right track.
This… this is what I have striven for.
Not the eradication of disabilities, of differences, of difficulties.
Merely the right support and knowledge to allow my family to experience life in as normal a way as can be (warts and all), and allow my children to thrive.
And I am deeply, deeply grateful to live in a country where that is possible. As difficult as it may be to access this help, at least it exists.
It strikes me sometimes when I look over what I write, that I could come across as downtrodden, rather cynical and generally a grump… I do hope that’s not the case!
It’s just that when life is going well, I seize it with both hands and whatever other appendages I have available, hold on tight and enjoy the ride. It’s usually fairly quick, so rather easily miss-able. There’s simply no time to write or blog or anything much else if I want to truly experience the Happy – which I do. My blog suffers as a result.
Time for a Happy!
The Daughter is growing quite beautifully, and thanks to a very special school, is thriving and learning. She is especially interested in science and since I am delving into biology we talk a great deal about all things scientific. (For instance, did you know that the planet Uranus was initially called George? – ponder, enjoy and delight in this wonderful fact!)
The Daughter and Little Man are on the verge of adolescence and getting quite grown up, but are still delighted and tickled by such words as bottom, bum, poo, wee, naked! Oh the joys and revels and laughter produced by such simple syllables!
Imagine the reaction, therefore, when I announced to her that I would be stripping an egg naked while she was at school, ready for some Science! Oh yes… stripping… an egg… naked!
You could, of course, now interrupt your reading of my little page to scurry off to Google. There are many, many entries for naked egg. And you would learn much the same as you will from here. But here!! oh me, oh my the wonders, the glories, the Happies that naked egg produced!!!!!
This activity is one I have long put off due to the time required in waiting. My littles are not so expert at waiting, and I felt that this would put a damper on the fun. How wrong I was! Waiting for each stage simply prolonged the joy!
So… step 1:
An egg, from a humble chicken (thank you dear friend and neighbour H for your chicken’s offering) has a shell – this one was brown, though H’s chickens also lay white and green (oh yes, green!!!) eggs. Whatever the colour, the shell is made up largely of calcium carbonate. It keeps the insides in and the outside out, all but air and such like needed by a potential chick to develop.
This egg was placed in a cup full of vinegar, also known as acetic acid. Then left for 48 hours.
As soon as the shell came into contact with the vinegar – immediately, astoundingly fast – bubbles!!! Bubbles began to cover the egg, and such was their power that the egg began to rotate of its own accord in the glass. It may be mentioned here that bubbles are one of life’s great wonders and joys. There are even scientists dedicated to the study of bubbles… bubble specialists, how wonderful!
For those of you interested:
CaCo3 + 2Ch3COOH → Ca(CH3COO)2 + H2O + CO2
calcium carbonate + acetic acid → calcium acetate + water + carbon dioxide
Those bubbles are carbon dioxide.
Once disrobed, you will have a naked egg!!! Which, it turns out, is ever so slightly bigger than the egg in its shell…hmmm, and soft and squishy and translucent – we could clearly see the yolk through the membrane!
This in itself was a glorious moment. The waiting had truly been worthwhile, because the Naked Egg is a thing of beauty and wonder. Even when you know what will happen, you will find yourself amazed and grinning like a silly thing at the craziness of the Naked Egg.
Step Two… call it torture, or inquisitiveness…
The Naked Egg was placed back in its cup, and covered with Golden Syrup. The Daughter declared it a shameful waste of such yumminess, but I and the Father agreed that Science was a much better use of the sticky stuff than pudding. There followed much bending of spoons to keep the Naked Egg submerged, but eventually it was trapped in the gooey stuff and left for a further 24 hours…
Oh that poor egg…
The entire Family was caught in rictuses (or is it rictii?) of revulsion as intense as the joy of seeing the Naked Egg for the first time. What had happened to our poor Egg? It had shrunk, shrivelled, become as baggy as those fabled bingo wings of elderly, rather unfit ladies.
The Daughter proposed that the air had been sucked out of the Egg. The Little agreed. But the the Daughter noticed an equally wondrous effect that changed her hypothesis: the Golden Syrup was no longer thick and unctuous, but had become watery and far less appetising for that change! The Daughter thus hypothesised that water, not air had been sucked out of her Egg.
There was much mourning over the condition of the Egg, and Daughter and Little both thought that our experiment had reached its end.
Oh no!! There is a Step Three:
After a rinse, the Naked Egg was placed in its cup once again, and this time covered with water that had been tinged with red food colouring.
The Daugher’s hypothesis was that the Egg would grow once more, and become red…
Is that not a thing of beauty? And the transformation this time was much more rapid! After a mere 4 or 5 hours, it had already regained its composure! Two more questions remained:
- Is the water inside the egg red? Has the colour as well as the water been able to cross the membrane?
- Will it bounce?
Will it bounce????? you ask. Well. Of course!!! It’s round (ish), soft and squishy. As Little said, it feels like a balloon. Once cannot fail to bounce the thing!
With much trepidation, the Daughter attempted a tiny teeny bounce…
A little higher…
(The Father, upon seeing the video later was horrified to see we were attempting this over his lovely wooden kitchen counter, with an egg filled with potentially red dye!)
The egg… DID bounce!!! And it was a thing of beauty, of joy and bated breath!
Sad to say, I cannot post a video here…
Sad to say, when Little attempted his first bounce, he was about 2mm more ambitious than his sister.
Sad to say, the Egg did not survive…
Of course, upon landing, the Naked Egg did BURST!!! And our first question was answered… was the water in the egg clear or red???
It. was. CLEAR! The red colouring had penetrated the membrane but not got all the way through!!
And thus, the story of the Naked Egg reaches its end!
it began on a Thursday evening, and continued until Sunday afternoon. The Naked Egg provided the Daughter, the Little, the Father and myself with smiles, wonder, giggles, disgust, anticipation, fear and curiosity satisfied. Not bad for a little egg!
From the moment you existed, you have stood alone exuding a strength and determination which take my breath away. I knew you were anchored inside me only two days after you were conceived… not as a part of me as I experienced with your brother, but as a distinct, separate entity.
As you grew in that little bubble of amniotic fluid, you continued to fill me with a sense of confidence. I felt a sense of unbelievable peace and confidence that you were growing exactly as you should, that I had no need to worry about you. You know your Mummy well enough to know that I am a worrier, and this is the first gift you gave me: an absence of anxiety, the most marvellous gift!
Once you were born, that sense of survival continued… you were such a quirky, beautiful, odd little baby. Doing things in your own time, in your own way and utterly determined not to be swayed by anyone (possibly apart from your Big Brother). That independence and determination filled me and fills me with pride and joy. After all, I never wanted to be a mother in order to “have” children. I looked forward to growing you, and helping you grow (cooking you, if you will) into independent, beautiful adults. You seemed to take that on board from the very beginning, and it is something I have always loved about you.
In one sense, you have always been “cooked”. Your eyes have always been deep and filled with the wisdom of a thousand years, yet you are still my little girl. You may not like or want those close cuddles and physical signs of affection, but I know in a million tiny ways how much you love me and depend on me.
In other ways you are so very little, and so very needy. And you take my breath away in your ability to surrender to that part of yourself, and to come to me or Daddy for help. Even when those pesky words just won’t come out, you find a way to say “please help me”, and let us know just as soon as you are able that those angry sounds just came out wrong.
I love and hate your ability to apologise so sincerely when you know you have done wrong. You have a strength of character that I simply do not, and you push me to find the best in myself so that I may respond in kind and forgive you as quickly and sincerely as you offer your sorry. You are quite a teacher, and I love you for it.
When I look at you, my Darling Girl, I imagine that if sunshine were to solidify, it could not find a shape much better than your heart and mind and soul…
So the next time that you worry that I may be sad that you do not like hugs… remember these things. Remember that you are precious far beyond my ability to hug, or speak or write. I am simply tremendously happy that you are You, and that you are part of my life.
Thank you, sweetpea!
Much hesitation follows, then she continues in an accent that immediately conveys her discomfort and anxiety:
“Is it making you sads when I is not liking hugs?”
I have to clarify that this wonderful girl is very nearly a teenager, tremendously bright and extremely articulate. She also happens to have Asperger’s syndrome and suffers from at times crippling anxiety. Her speech then becomes affected, from the appearance of strange and quirky accents, to grammar reminiscent of Roald Dahl’s BFG, to a complete inability to utter any word at all.
“Is it making you sads when I is not liking hugs?”…..
My answer was an immediate no, by the way. But her question stemmed from wonderful work occuring at her school during which she and her friends are exploring what it means to be autistic and a girl. And in the work, she learnt of a mummy who told of her sadness faced with her daughter’s dislike of physical affection.
There is a great deal written, especially in the world of blogs and social media, of the difficulties faced by parents of children with special needs. There is also a great deal written about the wonder of such a life.
I’d like to find a way to write a balance, to let you in to my life in such a way that you understand the extremes with which we live, simultaneously wonderful and dreadful. I’d like to find a way to write how much I love my children and being their mother, and yet how hard it is to witness their difficulties, how hard it is to bear the brunt of their confusion, anger and sadness.
Would I change anything about these three little people? No, categorically not. Simply because the sum of their experiences and differences make them who they are, and I am loving seeing the burgeoning personalities and the potential they have to add some unique colour to our world.
Would I have chosen such a life? Would I recommend that you have children with additional needs? No, categorically not. There is no simple answer here. Any new parent quickly realises that having a child is a one way journey that will change nearly everything about how life progresses. With our special children, that change comes at you like a steam train, and does not stop. It is far more extreme than you might imagine, and the period of change and uncertainty lasts… a long, long time. Your choices as a parent, and as an individual will be informed and often decided by the disabilities faced by your child, and this will likely continue far into their adulthood. Not to mention that these children will always face far greater challenges than most. From the beginning, their lives are just tough.
So I am trying to write to my daughter… to tell the world how much she means to me, to tell her that I love her and value her just as she is. But I do not want it to be a rose tinted letter. I do not want it to be a starry-eyed fairy tale, because she needs to feel a primal honesty in it if she is to believe it…
I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.
I ask for things I tell you my children are entitled to, and the passion that fills my voice, the knowledge that comes from hours of research, the tenacity that fills your inbox leads you to only one conclusion: I am asking for the world. Or at the very least, a sizeable chunk of the budget you are held responsible for. I ask for my Dream…
And suddenly I am struck with a thought… You must believe my Dream is the dream of a spoiled child with no sense of reality… You must believe I am demanding. A scrounger maybe. Out for something every parent wants, that exists only for the elite few with the funds to provide it. You have told me often enough that “the law allows for every child to have an education appropriate to his needs, Mrs S. That does not mean a Rolls Royce education”. Because as much as we would all want that, a state funded education cannot be a Rolls Royce education unless we are all willing to pay substantially higher taxes.
I have always been struck dumb by this statement. And it came to me today that the problem comes from a staggering disparity between what my expectations are, and what you fear them to be. (My expectations are surprisingly common amongst my friends and all the other “Special Parents” I have had the fortune to meet.)
Welcome to my world, my family. Welcome to my children, my aspirations and my expectations. Welcome to my Dream.
Let’s begin with a little boy, aged 6 a while ago, recently diagnosed with Aspeger’s syndrome. I want my little boy to experience more than one day every few weeks during which he does not feel so desperate, so afraid, so lost that he begs me to kill him. I know that his intellect is astounding, that a “normal” parent would be wishing for that private education that offers small classes, top of the range equipment, exam tuition. That normal parent would be expecting great things, scholarships, university and the sky.
Let me tell you of my aspirations for that Boy, and my expectations.
I hope that he finds some inner peace. I hope that he finds himself able to pursue an activity that gives him a sense of satisfaction. I hope that he is able to live independently.
I expect that he will attend a school staffed with people who understand the complexities of his “condition”. I expect that he will be emotionally and physically safe primarily, and that he will have access to academic education that will allow him (if he allows himself) to learn and progress intellectually. That. Is. It. The sum total of my expectations.
Secondly, we’ll find a little girl. Emotionally so vulnerable due to her childhood circumstance on top of Asperger’s syndrome that she spent the entirety of her junior schooling (aged 7 – 11) in a state of almost constant panic. Once again, exceedingly bright and able, willing to please and to learn. The “normal” parent has her education all planned out: tutoring and scholarships, early exams no doubt. Extra-curricular activities include gymnastics (she was chosen for an exclusive group due to talent), swimming, music. Her all round ability stuns that normal parent so much that the sky itself cannot limit her.
So here are my hopes and dreams, my aspirations for this amazing Girl:
I hope that she learns to tolerate the world. I hope that she allows herself to be loved. I hope that she finds a little corner of the world to call her own, and something to do that will give her a sense of accomplishment.
I expect that she will be able to go to school and be emotionally and mentally safe. I expect that she will not be in “fight or flight” mode every single day of her school life. I expect that her particular brand of autism will be understood and that her teachers will know to give her time to express herself. I expect that the educational system will allow for her to take some exams early, and some late to allow the time and space she will need to achieve. That will do… very nicely.
And then lastly, we have the Little Man. He has a range of medical problems, some moderate learning difficulty and his social isolation caused by being different has made him very fragile emotionally. My “normal” couterpart would have seen this little boy in all the drama clubs, sports groups (I’m removing the physical complications here), parties galore. He is the clown of the group, loved by all and entertainer extraodinaire. I’m out… this little boy’s history is such that a future was never dreamed of, and so every day, every year is a rather miraculous bonus.
But here we go… here are my dreams for him:
I hope that he is well enough to live, and enjoy living. I hope that he is well enough one day to live independently. I hope that he will have friends.
I expect that when I send him to school in the morning, I can be sure that any medical emergency will see him as safe as possible. I expect that he will be looked after by the adults at school, and that he not be the expert in his own medical care. I expect that his schooling take into account his physical problems. I expect that the staff at his school be in regular contact with me so that we can ensure his long term health. I expect him to have “peers” at school… a group, however small, of children with whom he has enough in common to forge relationships.
I do not believe that I have described Rolls Royce education in the way you describe. I believe that I have describe some basic conditions that we often colloquially refer to as human rights. I believe that I have asked that each of my children:
- Be physically safe while at school
- Be emotionally safe while at school
- Be able to learn within his or her intellectual, physical and emotional ability
Do not be afraid of my passion, my despair, my anger. They stem from my heartache at seeing children flounder much as fish do out of water. They stem from my feeling that as loud as I shout, as deep a river I fill with my tears, as much knowledge and evidence I provide you with, you do not hear, you do not care, you do not acknowledge. They stem from the knowledge that as simple as my Dream may be, it seems as far from me as Fantasy.
Please show me that my feeling is wrong. Show me that you hear, show me that you care, show me that you have read that evidence, that you acknowledge that I know many things about these particular children that you cannot because you have not lived with them.
My expectations are not those you fear…
My dreams are far, far simpler than you may think…
Please… be my Dream Catcher and let us, together, make those Dreams a Reality…