untangling this thing we call life…

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!

https://www.justgiving.com/fundraising/kesia-symcox

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Specialist schools are more than parking places


parking_place

photo by Robert Rickhoff

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.

Yet…

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.

 

The “It’s Just a Difference” Delusion


I’ve read this so many times now.  And it gets more tired every time.  “Autism is not a disability, it’s just a difference.”  It’s oft-quoted by the more strident and …

Source: The “It’s Just a Difference” Delusion

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!

Conversations with a six year old about disability


Conversations with a six year old about disability.

Consultation with a Paediatrician…


Doctor:

He’s looking well!

Mother:

Really??

He’s looking much the same as ever.

He’s exhausted all the time.

He can’t survive without a tube.

But you’re a doctor, you know these things… so?

mmm… well he’s ok, but we’re struggling with the same things

Little, how are you?

Little:

I’m fine

He’s never felt any different… so this is normal to him, of course his answer is “fine”

But let him speak, allow him his voice,

because contradicting that “fine” is like digging a hole for him to fall into.

The consultation that follows will be wishy-washy, blurry, with few decisions and at best a fuzzy plan to follow up in a few months, reliant on referrals that may or may not come to pass, because the doctor feels no sense of urgency.

Why? Because, perhaps, I have not been able to convey the urgency?

Because, perhaps, I was not strong enough, with Little in the room to stop her at the start and tell her, “no, he is not looking well”.

Maybe we could do things differently…

***

Before the appointment, an agreement that Little should not be present.

His physical body will not advance his care,

but many things must be discussed that could be psychologically damaging for him to hear.

How is Little?

He is much the same as usual.

He is tired, all the time, so much so that at eleven years old he needs to be in bed by 6.30pm.

He is often yellow, though this is improved when using medium chain fats in his diet.

His yellow colouring worsens with fatigue.

He is still dependent on four tube feeds a day plus an overnight feed.

He is ill, in other words, every single day, and has been for the last eleven years.

It’s also becoming clear that these problem are slowly getting worse.

What would you like to change?

I would like us to ask questions that might lead to answers.

So I would like a metabolic specialist involved because (insert my research).

I would like us to accept that tube weaning is not possible given our current knowledge.

I would like Little’s symptoms to be considered afresh, and with a sense of urgency.

I would like you to realise that even if you are new to Little, we are new to this world.

Our journey is already 11 years old.

I would like you to acknowledge the psychological damage that Little has undergone.

I would like to explore how we can help him.

I would like you to remember three things, each and every time you see or speak to me:

I am not your patient, I am your patient’s advocate.

I am a professional mother, with far more time, effort and motivation to find answers for this particular child than you have in your working life.

If you have my child’s best interests at heart, you need me on your team.


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