untangling this thing we call life…

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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



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…



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!



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.



The Renaissance Man is one who learns many things, continually. Unfortunately this image linked to the phrase does not come in female form…

The Oxford English Dictionary defines a profession thus:

An occupation in which a professed knowledge of some subject, field or science is applied;

A vocation or career, especially one that involves prolonged training and a formal qualification;

In the last fifteen years, I have had training in teaching, behaviour management, psychology, nursing, medical research, food science and dietetics, special needs education, negotiation and advocacy, to name but a few areas of my professed subject, or field.

There is no formal qualification available to my vocation, my career, and I am not paid.

But make no mistake, I am utterly, absolutely a professional.

And you need me on your team.



“Mummy….”

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…

Here goes…



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