Happy Surrender

 

Photo by Bernard Hermant on Unsplash

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Consent is not about being right

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

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

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

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

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

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

Because he was refusing consent to eat.

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

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

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

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

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

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

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

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

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

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

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

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

Of fourteen?

Ten?

Seven?

Three?

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

Because here is a nugget in the world of consent:

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

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

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

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

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

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

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

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

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

In practical terms, this means a couple of things.

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

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

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

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

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

 

Consent. Small Word, Big, BIG topic

And we’re not talking about sex!

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

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

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

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

Let me share an example…

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

England

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

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

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

source: www.gov.uk

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

 

Now consider this:

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

Work

Age 13

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

Age 16

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

Find out more about getting a job.

source: childline.org.uk

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

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

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

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

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

My question now is this:

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

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

Question 2:

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

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

…..?

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