Your child is disabled and has no diagnosis. Why did you stop asking why?

Your child is disabled and has no diagnosis. Why did you stop asking why?

My little boy is extremely lucky.

He is surrounded by love.

He goes to sleep to the sound of the waves and breathes in fresh sea air every day.

His school days are full of fun, challenge and fulfilment.

He has a simple life, but a good life.

When I think of my boy, it is this picture that I see in my mind. It is real. Not rose-tinted nor sugar-coated.

Somehow, the spectres that ran through my thoughts when he was tiny have faded beyond sight, or thought.

I am not overcome with despondency as I thought I would be, when I think of the fact he cannot walk or talk. I don’t spend a single second of thought entertaining notions that this life is unfair.

Because I take my lead from him. And he lives life big and large. And happy.

The tearing urgency to find a reason for his disabilities has passed. Instead, we share a little knowing laugh between us when the latest round of routine tests comes back marked ‘normal’.

And I have stopped racing to the postbox to see if any of the envelopes look like they might have come from a geneticist’s office, or from one of the academic studies supposedly sequencing his exome.

Five years ago, if I had tried to imagine a life with this extremity of disability in it, but no answer to the question ‘why?’, it would have felt unfathomable.

I had to protect myself with emotional paralysis and a dogged determination to find a reason. Or the weight of the days and years to come was simply too much.

How could we go on, with the toil and frustration, the physical hard work of caring, the hours spent feeding and changing on too little sleep? How could we continue to advocate for him in the face of societal systems that crush rather than care?

How could we do this without knowing the reason ‘why’?

How could we look him in the eye every day without pressing for answers that might tell us if he could be cured of his epilepsy or more able to communicate, be more independent?

Enveloped in an unceasing need to leave no stone unturned.

But every stone we have turned over is blank. Not a thread of a clue. No pattern, no path to explore. I no longer believe that anything will be found. And I find myself unsurprised to be at ease with that.

Simply the passing of time has sufficed.

Because now we can see that our boy is lucky. That for him, disability and living a great life are not mutually exclusive. He has his health, right now, and steps into each day with gusto.

So we have stopped asking ‘why’. There are others who need an answer to that question far more urgently than we.

Instead we take our lead from him.

His life is a happy one. By measure of laughter alone, he takes a lion’s share of joy in daily life. He has a sophisticated appreciation of the ridiculous. He sees life’s funny side. And is cushioned from life’s darker shadows.

His days are gentle, and funny, and fully of affection.

And I’m pretty sure he doesn’t waste a single second asking ‘why him?’

DISCLAIMER: the opinion expressed in this blog post represents our views only and I appreciate that for many families, the need to find an answer to their child’s disabilities or health condition remains critical.

I continue to advocate for their needs and wants within an NHS system that still has much work to do in developing a holistic view of undiagnosed children. Too often our children are seen ‘symptom first’ with little to no joining of the dots and therefore little hope of diagnosis.

This post was written for Undiagnosed Children’s Day 2019, in recognition of SWAN UK, the charity that connects families who have children with Syndromes Without A Name.

The first Undiagnosed Children’s Day took place in 2013. If you want to take a look at some old posts, most years I have managed to write something…


Dear Children’s Commissioner…about that home education thing.

Dear Children’s Commissioner…about that home education thing.

The Children’s Commissioner has started to weave a dangerous and harmful web in the minds of society that home education is a choice made by people who simply don’t want to toe the line, who may be up to no good, and who must be put under state surveillance.

Katherine Kowalski, On The Mother Hand

On Monday night, I sat up in bed to watch your programme about the huge increase in home education. I was interested as we are one of the families making up the numbers. Unexpectedly, my daughter is now one of the estimated 58,000 children in England being educated at home.

I felt a glimmer of hope that you might be speaking for my daughter in your report about “an unforgiving school system which appears to have lost kindness, skill and patience’… leaving increasing numbers of families to home educate as ‘a forced response to difficulties’…’the child struggling to cope with noisy corridors and classrooms .’

My daughter is that girl. Academically gifted with a love of learning. Kind. Empathetic and caring. Well-liked. The girl who never put a foot out of place at school. The girl who looked out for the vulnerable ones ignored or left out by the trampling crowds in the playground.

She should have an exceptionally bright and interesting future ahead of her.

And yet, for now, school is not part of that future. She is part of an ever-growing group of thousands of children battling with school-specific anxiety.

My daughter has endured years of escalating fear about going to school that has impacted not just her mental health but her physical health too.

In that time she has bravely managed two school moves with hope in her heart that ‘this time it would feel different’.

As a parent I have patiently encouraged and supported her through morning after morning of crippling panic. And night after night of sleep-prohibiting distress. For years.

Until one day she just couldn’t do it anymore. And even the SEND Co-Ordinator at school agreed that forcing her to come to school would be harmful. So we stopped. It was then expected that we would simply de-register her from school and home educate.

I asked for help. Asked for work to be sent home from school while we sought support from the GP, from CAMHS, and focused on re-building her emotionally. I contacted Education Welfare, I even spoke to my son’s Disabled Children’s care team about it. No help came. No school work came. We were left entirely alone.

So I went online and found thousands and thousands of families in just the same circumstances. Children effectively excluded from school by way of school-specific anxiety that nobody knows what to do with. Children without mental health support because in most parts of the country the system now only helps you if your child is suicidal.

Or children, like my daughter, whose sensory difficulties within the school environment were ignored and overlooked because they hid them behind a mask. The quiet, clever ones, who don’t attract attention, while silently choking down a panic attack.

And yet, desperate and sad parents who have asked for help, like we have, are instead threatened with prosecution as if they are colluding in some kind of feckless truancy.

Conversations with educators and local authority staff, the people who are supposed to help, are instead peppered with thinly-veiled threats and implications of abuse.

‘How do I know you’re not just hiding her in a cupboard?’

It is these desperate and sad parents, with children who have been let down by mainstream school, who need your help, Anne. And I’m afraid your call for a register of home-educated children and termly monitoring are light years far of the mark.

You call for increased monitoring on the basis that children are falling out of school at alarming rates and you are concerned about their welfare in the face of religious extremism and the potential for child abuse behind closed doors.

I don’t doubt those risks.

But what your programme did on Monday night was to spuriously imply that the massive increase in children leaving school to be home educated is led by a desire to religiously indoctrinate children in unhealthy ways or to conduct other forms of abuse.

And by choosing the inflammatory language that you did (Skipping School?), both your programme and report also perpetrated the falsehood that children leaving school to be home educated are truanting.

Whether this was your intention or not, you have painted a picture of thousands of children dropping out of school because their parents are reckless, weak, religious fanatics or abusers.

You have started to weave a dangerous and harmful web in the minds of society that home education is a choice made by people who simply don’t want to toe the line, who may be up to no good, and who must be put under state surveillance.

I’m not a parent who is anti-monitoring. Since I have another child who is disabled I’ve had to learn to live with social services being an almost permanent fixture in our homes and lives as it is the only way my son gets the support he needs.

But what you have missed is that monitoring home education (while perhaps necessary for other reasons) is shutting the stable door after the horse has bolted for the thousands of children who are leaving school because they have been harmed mentally and emotionally by being there.

If you want to stem the runaway tide of increasing thousands who are leaving school to be home educated, you need to shift your focus to schools. Look closely at what is happening behind those closed doors.

Help teachers and educators to view parents with less suspicion, not more. Help them to really listen to parents when they have a concern. Not to brush it under the carpet. Because I believe that’s what most of them really want to do. They want to help, but are hamstrung by a system that prevents them from doing so.

Help create more flexibility in the system, not rigidity, to support children for whom noisy, group-based, peer-supported or classroom-based learning just simply does not work.

You talk a lot about the rights of children. So help protect the rights of those children who are telling us that they are not coping in school and need to learn in different ways.

Help put in place processes that enable children who cannot learn in the current mainstream school environment to be provided with access to the curriculum at home, if their family is unable or unwilling to build a programme of home education by themselves. (For us, we have found a brilliant online school called InterHigh, and plenty of social and enriching opportunities at local home ed groups for sport, art and music).

Help overhaul the school system first before you go looking outside of it.

Yours,

A parent who needed help and didn’t get it.

If you’re a parent or a teacher of a child who is #notfineinschool you can find help by visiting Not Fine In School.

If you’re a parent in similar shoes who is receiving no help with educating your child who is at home due to school phobia, and wondering how to go about home educating, you can find lots of well-informed help and advice in the Facebook Group: Home Education UK.


Why I won’t be writing a countdown to 40 bucket list

Why I won’t be writing a countdown to 40 bucket list

 

9 months. Long enough to grow a human baby, or about 5 inches of hair. Time to complete a university academic year, or perhaps grow a banana plant.

Exactly 9 months today, I will turn 40.

Apparently that’s when life begins. Apparently it’s also the time by which a person should have ‘challenged oneself to do something that seems impossible’, ‘been on safari’, ‘read every book by a favourite author’ and ‘learnt about wine and cheese pairing’.

By those standards, I am perhaps running out of time. And I’m a literature graduate who really likes wine and cheese.

I have watched lions devour meaty carcasses at Longleat from behind my car window, and I have challenged myself to eat whole chillies and to stay awake all night, but I’m pretty sure the list makers would tell me those things don’t count.

Apparently it’s also the age by which a person should know their net worth (zero) and also know how much they have saved for retirement (also zero). That’s two ticks in the box there then. Or crosses. Whatever.

I’m not sure how I imagined my life might be at nearly 40.

If you’d asked me aged 10, I’d have said I’d be in the army or an equine physiotherapist, most definitely with no husband or children. Yuck.

Ask me again in my early twenties and I’d have forgotten those dreams and acquired some level of interest in men, babies if really necessary. Consciously or unconsciously shaped down a more conventional path, wallowing in dreams of writing literature while panic-buying jobs to pay the bills.

Ask me at 30 and I’d have convention written all over me with a husband, child and a mortgage in tow. I’d have imagined 40 would bring a beautiful house, travel, a sophisticated capsule wardrobe, children accomplishing amazing things.

Ask me now, having thrown convention somewhat to the wind by having a disabled child (not planned) and moved to Cornwall (somewhat planned) and I’ll show you a money-pit with grand plans always slightly beyond budget, camping holidays, a motley collection of clothing either too big or too small (mostly too small) and children accomplishing amazing things, just not the ones I expected.

When your children have special needs, pretty much everything becomes an amazing accomplishment, even if that thing is learning to crawl across the living room floor aged seven. Not how I expected. Not worse. Not better. Just different.

If 40 is supposed to be when life starts to get a little easier, I can’t imagine it being that. If it’s supposed to be the beginning of the end, I can’t imagine it being that either.

And yet it does feel like a milestone.

To be celebrated. Or marked in some way. I feel the need to do something.

I’m pretty sure I’ve already had at least one mid-life crisis. I have quit a multitude of jobs in my time. Moved to the seaside. Started a business.

I don’t need to burn the house down and start again.

So what next?

Maybe it’s time for pink hair and another tattoo. Time to finally write that book, or take up yoga.

Perhaps.

What I hadn’t anticipated, though, was the need I feel nine months from d-day to literally and metaphorically get my house in order.

I don’t know if this is typical behaviour in the final countdown to 40 or a hangover from the ‘living in survival mode’ for so long that having a child with special needs brings. Maybe it’s not either of those things, but a natural follow on to burn out. Rebuilding from the ground up. Taking control from chaos.

All I know now, with nine months to go, is that at 40 I’d like to feel like I’ve got my shit together a great deal more than I have right now.

For me, there will be no adrenalin filled ’40 before 40′ bucket list. No list of must haves or must dos. But I do want to take control. Get organised.

Maybe that’s just called being a grown up and I’m actually decades behind?

I like to think instead there’s no such thing as ‘grown up’, these days and its all just an iterative process of getting gradually better at being human, step by step through life.

Either way, the next nine months bring with them an exciting cocktail of Slimming World and Kon Mari.

Shifting unwanted belongings in more way than one.

Being left with only the good stuff.

Making space.

Space for life to begin, maybe.

Like Carl Jung said, the first forty years ‘you are just doing research’ after all…

 

 

 

 

 

 

 

 

 

Escapism, and a Great Escape, at Camp Bestival 2018

Escapism, and a Great Escape, at Camp Bestival 2018

 

A sky high pile of envelopes addressed to ‘the parent/carer of’.

Walls wearing unfinished paint jobs, countertops aloft with leaning towers of ironing and a smattering of wrinkly spring onions in the gritty bottom of the fridge.

Trump on the news again doing another something or other terrifyingly ridiculous.

Brexit doom.

The life/work merry-go-round in perpetuity.

Sometimes I want to get off. To run away from responsibility. To hide from the underbelly and coarse features of humanity that are thrust at us from all directions around the clock. International politics. War. Poverty. Bureaucracy.

Sometimes I only want to see colour. To be part of something free and joyful. To feel  warmth of spirit and carefree human connection. To be in the moment, enjoying the present without fear of what the next moment may bring.

Of course those colourful moments exist in the everyday without having to throw oneself off the merry-go-round at full pelt. But to bask in it, to linger in the reverie and emerge renewed, there’s nothing quite like packing up your family and most of your belongings into a van, pitching a tent in a field, donning a pair of neon mermaid leggings and dancing like a maniac for a weekend.

Unlike most of my friends, I was never a Glasto-goer in my twenties. Until about five years ago the closest I’d got to a festival was a muddy, shouty, teenage weekend wearing my one-of-a-kind G’n’R spray painted DMs at Donington Festival of Rock, pretending to enjoy the sepulchral screeching of ‘Pantera’ as fully grown men hurled flagons of lager-piss above the crowds.

When we moved to Cornwall, we discovered the glorious Port Eliot Festival. Literary heaven, quirky music, colourful theatre, boutiquey food and drink, secret midnight discos, wild swimming and fashion life drawing. A weekend of magic, right on our doorsteps, that we could flit in and out of to our hearts’ content and come home to a warm bed.

We’ve been every year since 2012. But this year, we stretched our festival legs a little further afield to Camp Bestival at Lulworth Castle in Dorset.

It was our first ‘proper’ festival experience as a family. Full on camping, complete with festival loos and zero electricity. Wholly immersed in the festival, on site and in deep.

We henna tattooed and braided ourselves.

Wore silly hats.

Ate incredible food.

Drank gin slushies and rocked out to the DJ BBQ.

Sat under blankets in the shelter of a neon-lit castle chilling to Clean Bandit and snacking on churros.

Discovered music we didn’t know we loved in the alluring voice and songs of Rae Morris.

Re-discovered music from our childhoods in the 80’s shaped ham of Rick Astley and marvelled at his cameo drumming partner, (who knew Mary Berry could play?).

Re-connected with old friends over G&Ts and made new ones over a delicious communal dinner at the River Cottage tent.

Watched panto.

Made slime.

Rode on the swing carousel approximately 800 times.

Giggled and boogied to Indian brass band music.

Met Max and Harvey (if you’re 9, you’ll know this is pretty much hitting the big time).

Sat in the sun and chilled in the beautiful castle grounds, with music and festival fun all around us.

Cried with absolute joy and delight at our boy revelling in every second of Mr Tumble at the Castle Stage.

A life moment none of us will ever forget.

Unable to tell us with words of his excitement, he showed us instead with a beaming little face and bursting-at-the-seams dolphin kicks. We took turns to hold him as he went full on.

Cheering and flapping and lurching in our arms, electrified by the real life stage show of his TV hero happening right in front of his eyes.

There was absolutely no doubt in our minds that, for those forty jubilant minutes, our boy was enraptured.

Moments like that are not easy to come by when your child can’t talk or walk, when he can’t enjoy or perhaps even understand many of the regular common-or-garden things that bring magic to a typical childhood…

…Writing Christmas lists…The tooth fairy visiting…Winning pass-the-parcel at a birthday party…Fairground rides…Unboxing Shopkins…Climbing to the very top of a tree and hiding…

But there he was, partying like a pro and completely spilling over with joy and excitement.

Sheep dipping ourselves into festival life for a weekend also felt a little like rediscovery.

Remembering who we were before the small people arrived.

Remembering who we were before we tripped over the cliff into a world we knew nothing of and where we are still finding our feet, navigating childhood disability and the melee of physical work, admin, persuasion, fear, re-building, trauma, dusting-off, over-organising, isolation and emotional baggage it brings.

In a world where just leaving the house for a day out involves a major planning exercise, for a few days we could just be spontaneous.

But we couldn’t have done that at just any festival. Camp Bestival made it easy for us to  do this because they have worked hard to be inclusive.

The accessible campsite was perfectly sited up close to the action but sheltered from noise. With enough showers, toilets and space around us to make it manageable for a family with a wheelchair user.

The Mobiloo was on site with its changing bench and hoist so we could comfortably and safely change our boy. (Although next year we’d LOVE to see a second a third Mobiloo on site at the Castle Stage and down at the Big Top to save the schlep back to camp).

The wheelchair platforms at the Castle Stage make it possible for wheelchair users to see the main acts in comfort and safety.

The main thoroughfares are all step free and wheelchair accessible. We saw many a person zipping about the festival in electric wheelchairs and the terrain was perfectly manageable in our all-terrain buggy.

And most of all, it’s a friendly, understanding and judgement-free kind of a place.

After three days of unadulterated glitter-strewn fun in the sun, we were of course deeply gutted to have to cut it short on Sunday as the wind and rain called an abrupt halt. We weren’t quite done.

As campers across the castle grounds made a Great Escape from the brutal conditions, we glumly packed up our belongings and headed back west along the A35, exhausted, but brimming with the topped-up feeling of a great time had.

At that moment we could have quite happily stayed in festival mode forever.

The laundry pile, however, says otherwise…

Until 2019, Camp Bestival.

Camp Bestival 2018

 

 

 

Parent carers: the hidden stress epidemic that no-one is talking about

Parent carers: the hidden stress epidemic that no-one is talking about

Last year, I learnt a lot about stress. The hard way. I am now almost 12 months into recovery from ‘burnout’. Not an official medical condition in its own right, but the symptoms most definitely are, with anxiety and depression sitting at the helm.

As I sat across the desk from the doctor in occupational health, the list of ‘risk factors’ for work-related stress that he read out was like listening to my own job description. As it actually was. Not the official version sitting somewhere in an HR file.

But as I listened, I realised that the very same risks at work that had tipped over my ‘stress’ into ‘mental health problems’, were lying in wait for me at home too.

Double whammy.

Nowhere to rest, recover, or top up the tank.

Being a parent to a disabled child is one of the most rewarding experiences of my life. He gives nothing but love and joy. But as parent carers the systems we have to negotiate and the situations we have to manage can be devastating for our mental health.

While employers have a legal duty of care to protect their employees from the damaging effects of unmanageable work-related stress, there is no similar protection for carers.

There is no big red button to press when stress becomes overwhelming. No solution offered, bar anti-depressants from the GP. The number of parent carers on long-term doses of anti-depressants must be staggering.

But anti-depressants should not be the answer to a system that all too often is the primary source of stress for parent carers. Amongst my own parent-caring peers, major life trauma aside, it is the systems delivering health, social care and education, not the role of caring itself, that are the cause of the most tears, frustration and often desperation.

Being technical and academic for a moment, there are six clear areas of risk for mental health damage through stress that the Health & Safety Executive has identified which employers must mitigate, or invite a law suit. Every one of them with red flags all over the place for parent carers too.

“Not able to cope with the demands of their work”

Caring is a 24/7 job. A physically, emotionally and mentally tough job. One that comes with a daily waterfall of paperwork and a team of dozens of people to manage, chase, meet and feed back to. Even the ‘short break’ that is supposed to come with a few hours a week of local authority funded carer time (for those who have fought for it), comes with the requirement to set up as an employer, recruit a carer, organise their life support & epilepsy training, hire and manage an accountant, report monthly to the local authority with timesheets, expenses and bank account balances.

Then there is the deep frustration of living your life amongst an NHS referral and appointments system that is not set up to adequately cope with long term or complex conditions. Or even to share information across trusts. Where errors are made, reports have to be chased and often corrected. Where appointments you have had to chase for months to get are cancelled by the hospital and then you are sent a rude letter because you ‘Did Not Attend’. Black mark to us… Back to the bottom of the snakes and ladders referral system we go.

“Unable to control the way they do their work”

Unwieldy bureaucracy does not lend itself well to any feeling of control. There is no sensible grouping of appointments and often little ability to dictate when and where they happen. Decisions about critical aspects of life like where your child will go to school, or where they are cared for when not at home are made by panels of people you have never met, and who have never met your child either.

We live our caring role atop a perpetual fear merry-go-round that we cannot control, of social care packages being reviewed every six months against a suffocating backdrop of ever increasing local authority cuts. We always have to be on our game, anticipating the next threat of a reduction or removal of support on which our child’s wellbeing and our ability to cope depends.

“Don’t receive enough information and support”

Bamboozling reports from medical professionals and social workers. Boxes filled but no real answers given. If you don’t fit the common mould, or a particular pathway, there is a cavernous Grand Canyon size lack of relevant information and support if you are the parent of a child with a disability or complex condition. Local authorities and the NHS are champions at over-producing reams of information <see ‘Family Information Service’>, but finding the relevant and useful stuff, well, good luck.

“Are having trouble with relationships at work, or are being bullied”

All too often relationships between parent carers and the local authority or NHS staff who are supposed to support us can be extremely testing. When relationships are good, they are great. When they are bad, they are incredibly damaging. I have witnessed friends of mine being bullied by social workers and left floundering in the most impossible of circumstances. To the point of the most severe impact on their mental health and that of their families.

“Don’t fully understand their roles and responsibilities”

There is no life manual for being a parent carer but there is an endless stream of people who come in to your life with their own views on what your job is. I have dined out too many times on my own personal anecdote of the early support worker who quizzed me on the exact number of minutes of physio I was doing with my son daily in the same sentence as telling me that ‘my decision to work was a lifestyle choice’.

“Are not engaged when a business is undergoing change”

The zig-zag boomerang rollercoaster of change in every aspect of health and social care impacts us constantly. When you interact with many multiple services week in week out, it can leave you feeling lost, spinning, concussed.

Many of the parent carers I know do their damnedest to keep on top of service change, attend public meetings, respond to consultations and help progress in the system as much as we can. But it’s not always easy and all too often we have to fight for it. Local authorities will say they have ‘engaged’ if they send a poster about a proposed service change to their local parent carer forum. The same forums that don’t promote themselves and that most parent carers aren’t members of.

No escape

When my health was compromised by a job that ticked all six of these risk factors, I left. But the jobs that come with being a parent carer aren’t jobs you can just walk away from. We cannot choose to engage with a different local authority or a different NHS. Because there is no choice. It’s what there is. We are bound to them, Hotel California style. There is no way out.

And while I can do my utmost to encourage and support change, and to highlight and celebrate good practice when I see it, I am genuinely fearful for both my own mental health and that of every parent carer in the country who has to accept these risk factors into their lives probably forever.

Who is looking out for the carers? Who is accountable when a parent is exposed to these risks not by an employer, but by the health and social care system that is supposed to support us?

Where is the big red flag that highlights somewhere in the system that a parent carer is at risk of being shunted face first into overwhelm? Until they show up at the GP with symptoms of anxiety and depression?

Because if you can keep the carers going, you can keep the cared-for going too.