At what age do we consider a human person to be an individual with a unique identity, with a sense of self sufficiency to make decisions regarding their emotions, their clothing style, hair choices, whether or not to pierce their ears?
As parents, I think many of us instil in our children the notion that they can earn our trust, that this is laudable and achievable and that by behaving in a certain way they will be able to make decisions that we will respect. And yet, how often do we then turn around and tell them they are too young to know what they are doing, what they are feeling? How often did we hear or have we said, “you are too young to know what being in love is”?
I began my parenting journey 17 years ago and it was always clear on my mind that these children were simply small people, young, inexperienced, not fully cooked, but people nevertheless. And I absolutely want to see them go out into the world on their own terms, to follow their passions.
When they were 2, I encouraged them to choose what they would wear (though I shopped!!). There were some interesting choices at times, but there was also always discussion. A dressing up outfit might be ok for a rainy home day, but maybe not so good when out and about. While we all love wellies and a raincoat, it’s probably not the ideal choice in 30 degree weather…
I have extraordinary children. They are all outspoken, yet respectful. They are kind and tolerant of everyone they meet (though that tolerance tends to waiver when faced with intolerance, stupidity or meanness). They are clear about their likes and dislikes and expect those to be respected as they respect the likes and dislikes of others.
When I look at them, I see three wonderful people. The older two in particular have pretty fully formed personalities. They are not naïve: they know themselves to be young, they know they are likely to change. And yet, they also know who they are, what they stand for, what they yearn for.
My daughter, aged 15, has been speaking to us for well over a year about her wish to shave her hair. It was a decision that she came to from many different angles, for many different reasons that she shared with us throughout that year. One element was her desire to do something in order to raise funds that would help scientists in their research into cancer. Another is a more personal one around her sense of identity.
We shared many, many discussions that were calm, happy and without a sense of urgency. At no point did she try to manipulate us or push us into a decision. At no point did she ever intimate that she could do this without permission. Of course she could have, but actually she doesn’t need to. She has no need to scurry into a position of rebellion because she is a person who is utterly respected in our home. As such, she talks, we listen and we all think and give time a chance to do its thing.
This amazing fifteen year old also went to speak to her head teacher. She wanted to explain why she wanted to do this, but also that she was aware that it might break school rules, that it might upset some staff or pupils. Fifteen years old.
She has a wonderful head teacher who listened. Who took the time to discuss it with her and told her that she needed to talk about it to other staff before making a decision. My wonderful Girl simply understood and waited. The answer was that she should be allowed to do this, but that it would be valuable for her to speak to the whole school in order to prepare the other students for a big change and to explain her reasons.
In other words, my daughter spoke to the adults in her life with respect and consideration, and was rewarded with the same behaviour in return.
She made a considered and considerate choice.
Then, bless her cotton socks, she informed me that I would be cutting all her hair off!! It turns out that hair is a strangely emotional thing and that we are pretty conditioned to the notion that girls have long hair! While utterly respecting her decision, being the one to wield the scissors was quite challenging!
The deed is done. This beautiful, smart, kind young lady has raised £300 to date and is sending her hair to the Little Princess Trust so that a child who has no hair can have a beautiful real hair wig. And the biggest surprise to me is that my daughter has emerged a little like a butterfly! A weight has been lifted from her. She tells me that she looks in the mirror and for the first in a very long time does not see an impostor. She is completely beautiful.
We, her father and I, her grandparents, struggled emotionally with the notion that she should cut off her hair. Hair that, let’s face it, grows constantly, pretty fast. But our histories, our biases, our comfort zones made us feel uneasy, uncomfortable. It might have been easy to consider her too young, too immature to make such a decision…
I refuse to do that. My daughter is a remarkable person, of whom I’m inordinately proud. I’m a little proud to have had a little input into this very special young lady, but mostly I love the fact that I would choose her as a friend in a heartbeat. Above all I trust her completely. She knows that I am there for her to talk to about anything, but she also knows that I trust her. And that has given her tremendous confidence, and possibly a sense of responsibility that means I know I have no reason not to afford her my trust.
Feel free to go and help raise her fundraising total! It would mean the world to her!
Special schools are not mere parking places for children who do not fit the mould our educational system seeks to fill.
In fact, language is changing a little. Five years ago, we spoke of special schools. Now, they are known as specialist schools. It’s a tiny change, and then again it’s huge. As words do, the word “special” has become derogatory, and needs updating somewhat. So our children are now more and more referred to as having additional needs rather than special needs. As much as we may resent it, semantics are often more important than we would like.
My son has been in a specialist school for several years now. His teachers, care staff and us as his parents have worked solidly as a team to help him grow and develop. The system has no way of measuring the kinds of progress he was making in all the time that he was refusing to attend classes. So it came as only a slight surprise that Authorities paused before agreeing to fund a similar placement for his post-16 education…
Our young man, however, has been given the time, space and support to grow; to develop his emotional brain without which any learning is simply not possible; to develop life skills that allow him to manage the simple day to day aspects of life that just do not come to him instinctively; to become independent in a way that boosts his self-esteem and gives him the ability to move forward. For the last few years, simply getting out of bed has been a huge challenge for him. He has had to manage some emotional upheavals that have left him bereft and apprehensive at the thought of forming new friendships. He has been hemmed into a national curriculum that did not have the flexibility to allow for that growth, but he was surrounded by teachers who were able to bend things enough to allow him to survive.
Against all odds, he sat four exams at GCSE and passed three… a remarkable achievement given his mental health and his struggles with autism.
In September, he made a fresh start at a new college. No younger, annoying kids. No school grounds – his house is an ordinary suburbian house, a mile away from the teaching building. No uniform. No one-size-fits-all timetable. No adults dictating what he can and should not do. The independence and freedom afforded to him and his peers terrify the Authorities… after all, these are vulnerable young people.
My son responds best to those who treat him as an equal, as a human being in full rather than a child who must conform “just because”. And he has found himself surrounded by adults who do just that – they consider him a young adult, and listen to him. In a subtle, gentle way that comes from years of experience, they are able to encourage and guide him with huge respect.
He has been there four weeks. He is happy – happier than I have EVER known him. He is attending classes at least three days a week – an improvement that no one could have predicted. He has made a group of acquaintances with whom he is spending time socialising. He is engaging with his teacher and with the adults on house.
This is success beyond measure. It is likely that there will be hiccups along the way… but we are absolutely on the right path to a young man who will be ready to step into the world as an independent young adult in a few years.
What makes this work is the relationship that we carve with his teachers, the care staff. We speak at least once a week, we email progress reports, concerns, celebrations. We listen to him… We hear what he has to say and we adjust our expectations, our hopes, our demands accordingly.
So a specialist school is not a parking place. It is a school, or college whose physical environment has been carefully considered with its cohort of young people’s needs in mind. It is a community of teachers and adults who have huge collective experience of a certain group of young people but who, more than anything else, understand that every single one of their students is an individual who must be treated as such. And it is a community that understands that success can only come when the young person is placed firmly at the centre, and surrounded by a team of parents, educators and carers.
When you bring all those factors together, amazing things can happen. I’ve been fortunate enough to find the right specialist school for each of my three children. I’ve worked hard to help the Authorities see why those schools would lead to the best outcome for them. I’ve worked continuously and very hard to ensure that those placements worked as well as they could. My job as a parent of very special children does not stop when they are at school… but with that collaboration..?
With that collaboration come hope, joy, progress. And every now and again, success.
I think about it ALL the time. Not because I’m hungry but because my Little is not.
Don’t get me wrong, 9 times out of 10 he will eat chocolate if given the chance, or sweets. And fairly often he will ask for crisps or chips, or even a crumpet. But half way through that crumpet, he is full. If I were to push (when he was younger), he would continue to try eating and vomit.
We do not know why he does not get hungry, and doctors haven’t even begun to listen to me about that aspect of his feeding difficulty. They are stuck at the gut – is it too slow, is it diseased? (Maybe, and no are the answers to those questions)
My reality is that he is eleven years old and has been utterly reliant on tube feeding since he was 8 months old. I am a tubie mum veteran.
I have ridden the waves of vomit using the various and wondrous concoctions given to him by the pharmaceutical companies (excuse me, the dietitians, who aren’t one little bit biased by those companies – no they’re not!). I have seen him fade away into nothingness and look a ghastly mixture of grey and yellow. I have watched as doctor followed nurse, followed doctor try to stick a cannula into a vein in order to rehydrate him. Knowing that they needed to stop sticking him with needles, knowing that we were creating trauma, and knowing that they could not stop because with every moment that passed, he needed fluid more, and with every moment that passed his dry little body was narrowing his veins.
I have stood against the medics, taken my gut instincts into my hands, learned more than any mother should ever need know about food, and calories, and fats and proteins and vitamins and minerals and digestion, and I have advocated for that child. I have watched a dietitian write in bold red letters: Mother going against medical advice.
And I have made that Little food, and blended it and sieved it and worked and worked to get enough goodness into the tiniest volume so that his body would not reject it.
I have spent each and every day of the past ten years feeding him every two or three hours, and overnight. We have a magic pump that allows me to sleep, and feeds him drip by drip so that the precious liquid stays inside, and hopefully translates to growth and energy. I have been up more times that I can remember to deal with the various alarms that pump gives off. Now, each time I hear that beep when out and about, my heart starts pumping and my body stands to attention. It takes a few minutes to realise that mine is not the attention being screamed for, that the pump in question is another child’s.
I make Little’s food every day or two. I have a recipe, but I question myself ALL the time. Do I need to rethink it, to recalculate? Have I missed something, should I be doing more, has his growth been enough to justify a change?
I think about food ALL the time.
I am not part of a team. We have doctors and nurses, and wonderful school teachers, and they largely follow my lead. I have no dietitian. Yet. I have no one to work with, to figure out a way forward.
Because this is an odd situation. The general consensus of “they” is that he will one day be tube free. He is mobile and intelligent and there is no physical reason that we can find to explain the need of tube feeding. So no medic will say or write that Little is “tube fed” in a permanent manner. I struggle to get them to acknowledge “for the foreseeable future”. In spite of tube weaning failure on a number of occasions.
Don’t get me wrong, I am not looking for a doom laden approach. But if he is one day to be tube free, we should have a team. It should include me. It should also include professionals who have experience in this area – the psychology of tube weaning is what has me ranting today, so a psychologist; a dietitian; a doctor. And as a team we should make a plan. I know that plan A is very unlikely to work, but as Eldest’s head of care wrote to me this week,
“If Plan A doesn’t work, then we’ll move to Plan B, then C, then D, then E and so on until we find a plan that works”
I have no plan. I do not have the ability, experience or knowledge to make a plan, and as Little’s mother I am the last person able to put any plan into practice. Most people will understand that mother and pre-adolescent coming head to head on such issues is a recipe for disaster.
Little hates his tube food.
Little hates thinking about food.
Little hates the feeling of his stomach filling.
Little fights me whenever food comes up – so breakfast, snack, lunch, snack, dinner. Whining, shouting, screaming.
I can avoid some fights when it comes to oral food. I make it his choice, but then he is miserable because even if his stomach is not hungry, his mouth is and he does not know what he feels like, and cannot find anything to satisfy that feeling. I suspect he feels failure too.
How can I avoid the fights about tube food? That is what keeps him healthy and alive.
He HATES tube food. It’s boring, it takes too long (about 3 minutes), there’s no point, it doesn’t do him any good. And anyway, he’s in hospital “all the time” as it is, so it wouldn’t make any difference if he was ill. He’s tired all the time, so it wouldn’t make any difference if he didn’t eat.
This is the discourse he proclaims. The confusion, misunderstanding, frustration, anxiety and anger are growing as he is getting older.
We should have had a team years ago. Years. Ago. Specifically to avoid This.
I am patient. My children have taught me not to raise my voice. They have taught me to accept their emotions, both bad and good. But I find myself raising that voice when Little screams at me that I am mean and stinky and evil because I want to feed him.
After all the battles, worries, stresses of helping three children navigate early childhood in spite of various disabilities; of clamouring at the doors of agencies whose role is to help support such children, but who are understandably all too aware of their budgets; of maintaining some kind of family “normal” and endeavouring to seek out little pockets of fun and Happy…
After all that, here we are:
All three children are Safe.
All three children are in an environment utterly suited to allow them to Thrive.
All is well.
[Just to be sure… the difficulties and needs have not vanished. They remain, and cause hiccups weekly, daily, sometimes hourly. But the external source of constant anxiety has gone, and we are experiencing something close to normal family life for the first time.]
One of the aspects of my character that has been most tested in the last decade is Trust. I am by nature an extremely trusting person, and also fiercely loyal. Once you have earned my trust, I will be utterly loyal to you even in the face of apparent difficulties and even betrayal. This has seen me bitten, and I have no idea whether it is a positive or negative aspect of my personality… it simply is.
So in this spirit, when the first raft of professionals entered my life, I trusted them. Each and every one had my Trust as a starting point. I’ve often been told that was and is naive. It is beyond my control, it simply is.
It will come as no surprise to any parent of special children that I have been battered as a result. A few months ago I sat in the paediatrician’s office in tears, telling her that I had become cynical and jaded, and that this above all else was breaking me.
I do think on the whole that I have retained my ability to Trust, but every now and again, I question myself. For someone as riddled with self doubt as I am, this is frankly exhausting.
A Child is struggling (no surprises!). From the outside, it would appear that school are doing very little, and showing very little concern for his abandonment of any pretence at learning.
I Trust. Everything in my being tells me that they care about that Child, and I know they have the experience to deal with him, so I Trust.
Until a day comes, as it did today, when self doubt enters the mix of legitimate anxiety and “special” management of the Child. Self doubt tells me that maybe I should be doing more. Self doubt asks me if school is doing what they should. Self doubt tells me that school have not been in touch for a few days, that I have not seen paperwork and plans. Self doubt tells me that I am a Fool to Trust.
And in voicing such doubts to friends, I am met with legitimate, understandable questions: maybe school should be doing this, and that and the other. After all, the Child must learn to do what is required etc…
Self doubt grows in strength, bringing with it its groupies, Panic, Anxiety and Tears.
Luckily, I know this pattern. I live with self doubt in uneasy truce, but I know his ways and I am ready.
I called the school.
And a simple fifteen minute conversation confirmed that Trust was right. That all the measures fed by years and years of experience are in place. That the Child is not Lost, that he is Cared for, Supported even though he may not like it, or realise it.
The call was a good one to make. I was able to speak of my need to feel a part of the Team again, and school agreed that they could help me with that. I allowed Trust to win, and I allowed school to reassure Me… to tell me that what I am doing (or not doing) is allowing them to best help the Child. That there are no magic wands, but that slowly and steadily we are on the right track.
This… this is what I have striven for.
Not the eradication of disabilities, of differences, of difficulties.
Merely the right support and knowledge to allow my family to experience life in as normal a way as can be (warts and all), and allow my children to thrive.
And I am deeply, deeply grateful to live in a country where that is possible. As difficult as it may be to access this help, at least it exists.
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!
I don’t especially aspire to “normal”… never have. I like quirky, I like unique, I like being different and those who are different.
I also take the meaning of the word “normal” as it should be – “usual, typical, expected”. When talking to others, I often refer to those growth charts mothers will be all too familiar with from baby days – those curves within which our infants sit and progress, and to which we cling, hoping our babies do not “fall off” them, as medical professionals imply that such a fall would be dire.
My Little Man sits firmly about an inch lower than the lowest of these curves: clearly, unequivocably, unjudgmentally out of the normal. It follows, therefore, that his growth is not normal. My goodness, how people react when I utter those words – as though I had spoken some unimaginably dreadful thing. But it is simple – the “norm” describes the vast majority of the population – 99% roughly. If you are outside that margin in whatever is being described, then you are by simple definition not normal. (As a little aside, I’ve rarely seen any particular advantage in being “normal”….)
Similarly, I think I have a fairly balanced perspective on “normal” behaviour in children. My personal experience was probably on the “good” side, but I had the joy of babysitting some “challenging” children, and in teaching I was familiar with a wide range of adolescent attitudes and behaviours, and privy to their parents’ challenges.
I’m an analyst and I have a tendency to judge my choices, behaviours and thoughts very harshly. In dealing with my lovely children, I have fairly high expectations of them in terms of manners and behaviour, but their various difficulties and our quirky experience of family life have taught me that allowances sometimes have to be made; that children need to rebel; that times change and expectations sometimes have to change with them….. etc, etc, etc… I know deep within my core that to expect anything close to perfection is simply unrealistic.
I know that teenagers can be surly and rude.
I know that they can rebel.
I know that many teens spend their lives in their rooms in front of computer screens.
I know that they do not go to sleep till the small wee hours.
You all have to stop telling me these things when I am at my wits’ end trying to get my teenager back to school. You have to stop telling me that it is normal for a little boy to have a tantrum simply because you ask him to wear a coat. You have to stop telling me that it is normal for a preteen girl to huff and puff in exasperation when asked to take her clothes upstairs.
Why do you have to stop? After all, you’re quite right. Teen boys don’t want to go back to school. Ten year olds don’t want to wear coats when the sun is out. Pre teen girls are in their very essence huffy.
Well this is why:
Last week, we began preparing a young man for his return to school three days before needed. Plans were made that he agreed to, and on the day when he decided against those plans, gentle support was the only way to go. I cannot emphasise enough how few strategies we have. Direct confrontation is not an option – it leads to fear, anxiety, anger, aggression and violence. In fact, the only option we have is time, and gentle persuasion. And time. In the event, Darling Man had to take one and a half days off work, a carer was needed to look after the two Littles, and us two adults had to be intensely WITH Eldest until midnight, and then all day the following day to support him in his return. Since then, there have been many phone calls to and from and with massive support from school staff, he is slowly beginning to settle back into school. Term has been in full swing for ten days now, and he is still not in class full time. So next time you tell me it’s normal to struggle to get your teen to school, think again – how often do you experience this?
Little Man, who is constantly, continuously, heart breakingly exhausted, was due to have a friend to lunch. Said friend lives up our road. We walked out of the house, and I asked him to wear a jacket. In spite of the sunshine, it is still chilly and his health is such that a light jacket is simply the appropriate clothing. This simple request led to screaming, shouting, refusal in the middle of the road for ten minutes, after which I carried him back into the house. He began to hit me and kick, so Dad stepped in. More punching, kicking and throwing whatever was to hand… and all the time shouting “let go of me”….. we were not touching him but he seemed unable to process that. This state of play lasted for nearly an hour, during which we were able to steer him into his room. Screams eventually turned to sobs, and a good while later he emerged full of remorse, and completely worn out. So next time you tell me that little boys have tantrums, think again – how many of your ten year olds lose control so utterly over such a trivial matter? And how many of them are then unable to do anything but sit on the sofa for the remainder of the day?
I’m going to give you the pre teen girl. The difference with mine I suspect is the emotional intensity of her emotions, but mostly the emotional intensity of the aftermath. She comes to her senses more easily and quickly than the average teeny girl I think… But topples straight into Guilt, which then needs huge support to work past.
Parenting’s not easy, not for anyone. And I’ve no doubt that for parents of children who lie in the norm of childhood behaivour, some days can feel everlasting, and life can sometimes feel really hard.
But truly… until you’ve experienced the intensity of reaction and behaviour that our “special”, “out of the norm” children experience and force us parents to experience, you must stop telling me, us, that “all children do that, it’s normal”.
Sweet Girl is going through strange times – I do wonder if hormones are at play. Anyway, despite really not wanting to, she has managed to do her homework. She must use words in sentences to learn their spellings. She has given me permisson to share it with you all. The given words are in bold and blue, and you should all know that she gets extra marks for making her sentences interesting. In the last few weeks she has challenged herself to make a complete story from the set of often disparate words… My daughter the wordsmith, how I love her!
A sovereign, in 1066, was in disguise having a coffee at Cafe Nero. Being incognito, he found that he had to pay. However, as this was extraordinarily rare the king, whose name was Toby, had no cash in his pockets. Luckily he had just recently invented the cheques so he took out his feather quill and wrote a cheque to the waiter. As he handed the cheque to the waiter, King Toby realised in a sudden tsunami of shock how utterly grotesque this person was. He wore a hippy robe and a jester’s hat with a pale face covered in clown markings. Queen Tobathena suddenly burst through the wooden doors and screeched at the top of her voice, “Toby, oh Toby, I have some confidential information that is essential I give to you!”. Upon seeing the piece of parchment in her beloved’s hand, her whole body became stationary with shock. For five whole minutes she stood there, motionless. King Toby, to awaken his wife, tickled the beautiful lady under the chin. Tobathena took one glance at the horrific waiter and immediately recognised him as a hugely influential newspaper reporter who encouraged people to like the king.
I’m told that this is the end. It is designed to be a cliffhanger, but she also informs me that there will be no follow up. That’s our lot! I’m kind of gasping for the rest, but I shall have to live with the disappointment, for this young lady once decided rarely changes her mind.