We have a bit of a habit in this society of conflating the word ‘accessibility’ with wheelchair access. It is quite easy to see how this has happened. Many years ago, neurodiversity and non-physical disability were less understood (although we still have a very long way to go). We thought about an accessible building as having a ramp for a wheelchair user, perhaps a lift, that was about it.

Vitally important things, but we didn’t consider about accessible activities; things like autism-friendly cinema screenings, sensory rooms in hospitals, or queue jump passes for rides at theme parks. These are the small changes, the reasonable adjustments that can make or break a day for many families of disabled children.

The knowledge however simply isn’t there.

We still endure double takes when we jump a queue at a theme park, we still have stares when a meltdown occurs in a supermarket and our eight year old (who I can no longer lift) is lying across the floor. I will never forget the moment that someone once stepped right over her when she did that, a gesture so lacking in compassion.  

As most of us will have discovered in the childhood disability community, having a ‘hidden’ disability can bring its own set of challenges. Our little girl wears an epilepsy helmet nearly all of the time. It protects her from physical injury, but a by-product is that it protects us from judgement or sidelong glances if we use a disabled parking space. It’s an obvious physical signifier that she is disabled.    

Accessibility to the world, to life, is not just about reasonable adjustments from companies or organisations, where we are protected by the law. These adjustments need to come from the public, too. Often they do and we are offered help, or a supportive smile. The times we are overlooked or stared at however; they sting and sting. 

Often we need people to make a little adjustment to their day to help us get through ours. Sometimes that adjustment is as small as letting us skip ahead in the queue if you can see my child is not coping. We need to empower everyone with the awareness and education to help. I hope we can together raise a generation of children for whom this becomes second nature.      

My child has a rare condition. It is called Lennox Gastaut Syndrome (LGS) but it’s even rarer than that, her LGS is caused by a genetic alteration that’s super rare (my words, not the medical term). 

I managed to track down a global Facebook group for the gene about four years ago. Last time I checked there were 97 members, worldwide. That’s obviously not everyone, but it gives an indication of how unusual this is. The children in the group all present very differently, so within this we feel rarer still.

If you are not in the disability community, it can be hard to imagine that a child could have something so rare and complex that modern medicine is just not cutting it when it comes to treatment.

My daughter’s main symptom is seizures.

All types – big violent ones, long ones, drop ones, eye fluttery ones; none of these are medical terms but they help to describe them more effectively for people that are not part of the epilepsy community.

We are regularly asked by new people, often in disbelief when I explain how many seizures she suffers through, why there is not an effective treatment and if she will grow out of it. The answer to the second question is easy – no. She has a lifelong genetic condition and hers is not an epilepsy that gets better with age, sadly.

The first question however – often accompanied by the phrase ‘surely something can be done’ is a sobering reminder that we, as humans, know so little about the brain. We have a series of drugs (she’s on 4 at the moment but has tried around 10) but all are blunt instruments that are hard to evaluate when it comes to their efficacy.

We have a Vagus Nerve Stimulator (stimulates the vagus nerve which goes to her brain) which sounds whizzy and technical but again, we don’t know how much it helps. She is also on a medically-prescribed ketogenic diet.

Essentially, we’ve thrown the book at it and she still has seizures, lots of them.

Who knows, maybe if she was on no therapies she may be better, or, perhaps they are helping lots and she’d be having hundreds more seizures if she was on nothing. We don’t know, and we can’t easily test it. Rocking the boat is too terrifying and we’ve been in many worse places that we are now. So we have to plod along and keep trying with the fairly basic tools we have in front of us.

The challenge with rare conditions is that often, very little research is available on the very specific condition. There is often a lot more for a broader condition, in our case epilepsy, but epilepsies, and individual brains, have vast and intricate differences which means what works for some, may be disastrous for another.

It’s essentially a guessing game at this stage, with a bit of gut feeling for good measure.

When you sit alongside consultants and the next move in the game is a joint decision between all of you, things feel different. In some ways this feels good, you are heard as a parent; in others it feels terrifying as our unique child has touched the boundaries of medical science. Let’s hope that the future pushes that boundary further for the next generation of children with rare conditions.

Ah, self-care. That brilliant two word ideal that’s flung about by everyone from influencers to our children’s healthcare professionals. I am pretty sure nearly all parent-carers (parents who care for a child with a disability) have heard the phrase ‘you can’t pour from an empty cup’ at some point. While well-meaning, I have an issue with that phrase. It assumes the main reason for looking after yourself is so you can look after somebody else. But we all have a right to be happy, and feel well, full stop. If that makes us better carers then excellent, but let’s start with us.

With this in mind I wanted to share some things that have helped me:

1. Walking

Getting out. Walking for a purpose, to get a pint of milk; or walking just to walk. Normally my walks are accompanied by a podcast or lovely long voice note from a friend (see 2.). Extra points if there is sunshine.

2. Voice notes.

This is not everyone’s cup of tea but I wanted to share this in case it helps someone. Since 2020, I have been in two ‘voice notes’ groups with a few friends in WhatsApp. Each group has two close and very trustworthy friends in. Our voice notes have progressed from a few minutes to, in one group, 40 mins on average.

It’s initially a strange feeling, just downloading thoughts and talking into your phone, but over the years we have come to realise what a hugely valuable, and unique way of communicating it is. No interruptions, a chance to fully unpack. You then get a response from a friend who has time to think about what you said and is replying when it suits them. No more ‘we must catch up soon.’  It doesn’t have to be deep and meaningful stuff, much of our conversation is on what we are having for tea.

3. Saying yes.

Covid got us all used to staying in as much as possible. I have found myself saying no to more things than I have realised since. Lately I have said yes to coffees, dinners at friends, and meeting up. It makes a huge difference and there is nothing like face-to-face connections.   

4. Moving.

Whatever that looks like. I run (not far), do yoga and have just joined my local gym for classes. I did my first spin class this week, my legs nearly flew off but it was fun, and I could think of nothing else while I was doing it. 

5. Counselling.

We are lucky enough to be able to pay for counselling, but some services, such as CBT can be accessed through the NHS. It helps me enormously.

6. Medication.

We know that self-care is needed, but finding time as a parent carer can be hard. Trying something, however small, is a good place to start.

I recently supported an old friend through some worrying hospital tests for her child. They were similar to ones we’d gone through for my daughter who has a rare and severe form of epilepsy and a learning disability. I found myself offering reassurance; not that everything would be ok with the tests (we did not know that); but that she would cope, whatever the outcome.

In the early days of my daughter’s diagnosis, I remember thinking I would not be able to cope with parenting a disabled child. That was when I was imagining what life may be like and what we may be dealing with. In fact, the day to day reality has probably been even more extreme and challenging than I could have imagined. Perhaps the most surprising thing then, is that we are ok.

Life is good, we are happy.

It can be hard for anyone not in the SEN world to imagine that a life with daily seizures, hospital stays, emergency ambulance trips, cognitive regression, and some seriously challenging behaviours to manage could be a happy one. But our life is happy. Sometimes I find myself looking at other families, families who do not have a disabled child, who on the face of it have the ‘perfect’ set up and still find myself surprised that they seem no less stressed than us, and no happier.

I now know why; it’s hidden in something that those in the non-SEN world will never get to experience

In our world, we get joy, happiness, elation even, from things that others wouldn’t even notice.

. I find myself walking to work with a spring in my step as my daughter has not had a seizure that morning; I call my husband in excitement as she just signed ‘home’ for the first time since losing her speech; one of our fantastic carers arrives and we have a giggle about something. Many things I used to worry about don’t get a second thought now.

I remember reading on a parenting website in the early days, a comment from someone that said having a child with a disability made them no less happy. I thought that was nonsense, although tried to take some comfort from it. I get it now. I feel lucky to be in the same position.

Here’s the bit where I say I wouldn’t change a thing. But I would. I’d kick epilepsy to the kerb and make sure my daughter never had a seizure again. But the rest of it, the rest of the alternative life, my daughter’s incredible energy, happiness and carefree spirit? That I wouldn’t give up so easily. Nor the person it has enabled me to become. 

We’ve had multiple hospital admissions with our eight year old daughter, who was diagnosed with epilepsy at 18 months. She has a complex epilepsy that is very hard to treat. Some stays have been terrifying, some funny (I’ll explain) and some have now become almost run of the mill.

Our first stay was during her diagnosis. As our little room filled with people, we were terrified. She was confirmed to be having seizures. Tests were ordered for a wide range of conditions (I still don’t know what they all were) but we were soon facing the reality that life was unlikely to follow the path we imagined.   

Those stays would be the first of many for us

We arrived by ambulance for some subsequent ones, with prolonged seizures. Some stays were for investigations to see if she was a candidate for surgery, some were for the surgery itself (she has a Vagus Nerve Stimulator).

Other more recent ones have been for non-convulsive status epilepticus. Recently we were ambulanced to hospital with a prolonged seizure. By the time we got on to the high dependency unit, she’d had a quick sleep, leapt out of bed and was signing ‘home’. 

The nurse told me it was the first time she’d ever admitted someone on to the ward and then discharged them, all while covering someone else’s break (that was the funny one).

So, some tips for hospital stays. This is what works for me: 

1. Say thank you and be nice to people (it’s ok to get inwardly irritated by professionals though, they are humans, and I have done my fair share of private eye rolling when things have been said less than sensitively)

2. Get your support network in place, if you are lucky enough to have friends and / or family offering help, say yes. Tell them what you need (I normally go for food).

3. Don’t be afraid to ask the nurses questions; is there a playroom? is there somewhere I can make tea? Often the nurses are too busy to brief you in when you arrive.

4. Take in home comforts – your fave tea, chocolate, blanket, whatever makes you feel better. Headphones are good for podcasts if your child is sleeping a lot. 

5. Take comfy clothes – I go for leggings or joggers and often bring slippers to pad around in.    

Although our stays have been frightening at times, I have, for much of them, felt comforted. I will end by sharing one exceptional act of kindness that I experienced when we were in last week for four nights.

A nurse overheard me on the phone to my husband asking him to send in some 85% chocolate. Shortly after the call she appeared with two mini bars, 75% and 85% saying “I couldn’t catch if you wanted 75% or 85%”, offering them both to me. I could have cried. That chocolate tasted so good.

Like many families of disabled children, we view approaching holidays with a sense of dread. That may sound dramatic, but it is the reality for families for whom school is not just about education, but is about essential respite.

The needs of my child are so great that she requires at least one to one care at all times, most of the time we cannot be more than a metre from her. Other times, when her seizures are very bad, we have to physically hold her on a harness as she walks around to prevent injury.

Being tethered to your child like this gives a whole new meaning to attachment parenting.

Christmas for us evokes all sorts of emotions, of course there is some excitement, but it comes with a sense of heavy apprehension. Will we get a seizure free day? Will we be in hospital? What would that mean for our other child? The weight of it is tiring.

Like birthdays, Christmas can also be tinged with sadness, it can be a reminder of the things our little girl cannot do or understand, for example Father Christmas, or the anticipation of presents.

It can be exhausting to try to come up with present ideas when her development is not linear, there are only so many sensory toys one house can accommodate…

It’s important for families like ours to know they are not alone and there are some brilliant groups on Facebook that connect families and provide a supportive space for discussion. The charity Contact runs one of these.

Over the years I have learnt to try to let go of expectation or pressure when it comes to big events.

It’s a bit of trite line, but it really is just one day. In my experience of being a parent carer there is much joy to be found all year round in the good times.

I find those good moments, hours, days are turbocharged with happiness, perhaps of an intensity that typical families may not get to experience.

So, while it will always be a special occasion, Christmas for us will never be laden with the expectation that it will be a highlight of the year, that’s just as likely to occur on another day, when my little girl says a new word or has a really happy day. It’s in these times that real joy and celebration lies for us.  

That title is a bit of an odd one as by their nature parent carers work. So very hard.

For me it feels a bit like being in a senior position with huge levels of responsibility, having to deal with multiple experts, do all the admin yourself (no PAs exist for parent carers), all the while being so deeply emotionally invested in the outcomes that it hurts.

As with most jobs, this one comes with its fair share of pay offs, the elation when a therapy or new drug seems to work, or the shout-it-from-the-rooftops celebration for what to outsiders may look like the smallest achievement (we were recently celebrating my daughter learning to help put her arms into clothes again, following huge regression and loss of skills).

I also have another, more typical job, which I absolutely love and which enables me to be the mum and the parent carer I want to be. Importantly for me, it has nothing whatsoever to do with childhood disability.

I am lucky enough to have remained in a fairly senior position in my company while juggling hospital trips (many sudden, dramatic ones – our daughter has severe epilepsy) appointments and the actual mumming bit too. This isn’t down to me being some kind of superwoman, far from it (although you are frequently told you are ‘amazing’ when you are a parent carer – I’ll take that).

I have stubbornly maintained my career because I need it, for my own wellbeing and maintaining what can feel like a very fragile sense of self sometimes. It’s easy to feel ‘you’ being slowly eroded as a parent to a disabled child and not just with painfully frequent references to you as ‘mum’ from professionals.

Well-meaning I know but I wince every time I hear it.

My job has evolved to become a place of sanctuary for me. A place where I can use my skills and spend time with a team I love. This is a team of people (9 of us) who know all about my daughter, who know to interrupt me in a meeting if my phone goes (I have it set on a crazy-loud ring which makes everyone jump, typical I suspect for most people with a child with epilepsy) and would drop everything to give me a lift to the hospital.

They also know I need to be able to have a quick cry now and then. For many parent carers working is not an option so I feel lucky. Should I feel lucky? Ideally not. I would like to see workplaces make employment far more accessible for parents of disabled children.

I have heard stories of people being refused employment as they need to have their phone on them at all times. That’s just rubbish. We’re niche group and I don’t think there’s specific legislation around this at present.

Women seem to be taking the brunt of this too. After having a child most of us can get back to work in some form. Got a disabled child? Stop right there. At this point you are dished up a generous serving of appointments, therapies and meetings with a side dish of eye-watering form filling.

Your plate is full. It doesn’t leave much room for resuming, or starting a career.

The thing is, having a job, for me (and I suspect for many more parent carers, if they were given the chance to do it) is a form of support and that thing called ‘self-care’ which we are also supposed to be fitting in.

It can build confidence, skills, relationships, and leave you more able and prepared to handle the demands of parenting a disabled child. My ability to quickly bash out an assertive email or to challenge professionals comes from my work.

So, turns out I’m not amazing, or superwoman, I just do what I need to do and I am grateful to have an employer that enables this. I hope more parent carers can have that chance in the future.

I never wanted to start on this journey. I fought and struggled when I found myself caught in a current taking me somewhere, I did not want to be.

I was terrified for what I would see, experience and feel on the way. I was frightened of being swept under, of drowning and not being able to cope. I leapt ahead – our daughter was 18 months old when she had her first seizure and I was already visualising rapidly changing and scary scenarios in our future.

I’ve got a boat now, a lovely one too. Others are in it (a husband, two daughters and two cats) and many others sail beside us. We’ve been battered by storms that have felt relentless this year but right now (and by that I mean today, I try to avoid thinking much further ahead) the waters are calm, steady. The sun is out and the breeze is cool.

There could be a waterfall around the next corner but this journey has taught me that we have to try to live in the much talked about ‘now’ and draw all the strength we can from it when it’s good.

Paradoxically, my anxiety (like many people, anxiety is something I live with) has been the best it has ever been since starting on this journey. I’ve tried to think about why this may be – I think when calling 999 becomes a standard thing to do, other stuff doesn’t get the importance ranking it used to.

I’ve built up a pretty effective toolkit over the years. Here are a few things I’ve learnt so far:

You are still you

Keeping hold of your sense of self is important. You will frequently be referred to as ‘dad’ / ‘mum’ by people who are not your kids. I find a polite response using your actual name helps, if they don’t get the hint then at least you’ve reminded yourself. If you have a job, don’t give it up because you feel you should.  This was one of my biggest fears when we first had a diagnosis and I’m pleased to say it was just a fear. I still have, and love, my job.

Do your best to be assertive

This does not mean to be aggressive. Professionals want to help. Sometimes they just slip up, make a mistake or forget to include you in things. I attended some brilliant training recently on how to handle meetings with professionals. One of my favourite tips was to ask for an agenda for any meetings that are being called and ask for a list of attendees beforehand. It’s a show of strength from the outset and also helps you prepare. It reminds people that you are a professional too.

Download the mental load

Ah the mental load. The mental load of many people (disproportionately women, in my experience) is heavy. If you bring a disabled child into the equation it can become suffocating. I read a great column by Oliver Burkeman recently where he talked about the power of getting things out of your head and down on paper as a list (or whatever you prefer to use, I have just discovered Trello which I love). I feel lighter when all my ‘to dos’ swirl out of my head and onto a list.

Be open – make it ok to talk about

I appreciate this isn’t easy for everyone. If you are able to be open with others, I find it does mean support can flow in more easily. Often, it’s emotional support (obviously very important) but, if you’re lucky, you may find yourself in receipt of a lasagne on your doorstep.

Self-care

Ugh, I hate that phrase. Not because there is anything inherently wrong with it but more that it seems to be increasingly used as some kind of generic tick-box advice that’s flung around. For many of us, looking after ourselves isn’t just as simple of doing a bit of yoga. That said, stuff for you really does need to be on your to do list, whatever that looks like.

If I could tell myself something when we started on this journey it is this: You will cope and, despite some difficult times, life will not be less happy. You’ll find joy in places you never knew it existed.