Carers:part of the family

When you care for someone with a disability, you may be entitled to some help, here in the UK. For the last 15 years, we have been fortunate to have that kind of help.

We have had “carers” come into the home to help look after one or other of the children. Two of them had this “entitlement”, and it took a bit of work to explain to the powers that be that real help would be had if the carer could on occasion look after all three, or at least the third one sometimes!

So we have welcomed people into our home and our lives for the greater part of our parenting journey.

Now, they are more often called “personal assistants” than “carer”. I don’t really like either term, and my growing Offspring hate them.

The reality is that true help only comes when that person becomes part of the family. When we have built a relationship of trust, of mutual understanding and of fun! We have had many people come and go over the years, and some have stayed with us for several years each… those have been the best and have a similar role in the children’s lives as aunts and uncles might have in more traditional families.

As they grow, the needs change. For the longest time, these lovely carers spent much of their time supporting me, and I needed them to be a kind of replacement mother for the system to work.

Now, they need a friend, a mate who will just make going out and being independent that little bit easier. That slightly older cousin that might have taken you on your first parent-free trip to London…

Finding someone like that in this situation is like finding gold dust! But we have!

Today was lovely. Listening to the beginning of a relationship, noticing the enjoyment of all parties and seeing some blossoming. Just lovely.

So here’s to all “carers” or “personal assistants”. You are hugely underpaid and undervalued. Know that in this house, you are precious treasure, and will always be considered family. Our door will forever be open to you.


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?




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…


On trust, independence, identity and parenting…

KesiaAt 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!

Diagnosis Shock

take_life_one_cup_of_tea_at_a_time_poster-r89922c11c94248558e03c755378040f3_rjc_8byvr_1024I’m sitting here, reeling once again from the shock of diagnosis.

The strange thing is that this is actually not a new diagnosis, nor is it a serious one. In Little’s life, this is but a mere blip. Turns out, diagnosis shock is real, regardless of the seriousness of the dx…

And yet, having gone through the sadly typical journey of diagnosing him myself, getting righteously angry at the slip up, seeing the doctor and having a formal diagnosis and now a course of action, I’m now shaking and teary. Emotions are funny old things.

Having a child as complicated as Little means that more mundane childhood issues sink to the bottom of the pile. And the follow up visits with the paediatrician simply don’t address them.

Ten years ago, almost to the day he received a diagnosis of virally induced asthma. This was following a bad spell of croup which has left him in hospital – again.

We were given a preventative inhaler, with very minor instructions, and that was the end of that. No asthma action plan, no checking on inhaler technique, no reviews… in fact, it was as though the diagnosis was so minor as to be irrelevant.

Over the years, croup reared its head, we always ended up in hospital, ill for days, losing weight. I always mentioned the asthma, but it was never heard, and I didn’t push because it didn’t feel serious or even quite real.

This week, the boy has been coughing fit to burst. We haven’t slept for nights, he has hardly eaten a thing. We’ve seen doctors, had steroids, ended up in hospital (luckily not in-patient) and the cough just goes on and on, only stopping after using his salbutamol inhaler.

In desperation, I googled.

Guess what?? Asthma doesn’t always come in wheezy form! It can also be “just” coughing.

And Little fits the symptoms absolutely perfectly.

We are now in a protocol, in a system. We have a suitable gizmo for his inhaler, we have spare inhalers. We have an appointment with the asthma nurse, and will have an action plan and all the paraphernalia needed at school. In other words, we finally have a proper diagnosis that brings with it a plan of action.

I’m hugely relieved.

I’m also feeling dreadfully guilty that had I kept on top of this, we would no doubt have avoided countless hospital admissions, and that this week he would have been spared a lot of distress and pain.

There’s no one to blame, and everyone. This was picked up early, really well, but was never actioned!

We finally have a care coordinator at our main paeds hospital, whom we are due to meet next week. This is typical of the reasons we need a doctor pulling everything together. I may be on the ball, I may do a lot of research, but I am no replacement for a doctor with medical training and experience.

Now I’m off to make a cup of tea, allow myself a few tears to process all this then get to the laundry to have the house ready for the boarders to come home for their half term…

Never close doors…

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!