When I started my career after university in a busy London PR agency, I soon became acquainted with the Sundy Night Blues. That feeling that starts to creep in at around 1pm on Sunday and, by the time the perky theme tune of the Antiques Roadshow strikes up, has enveloped you, tainting the precious last few hours of the weekend.

Many people I know still get that feeling now. Wishing the week away and celebrating the weekend is very much part of small talk; ‘At least it’s Friday’ / ‘Back to work / school tomorrow – sigh’, ‘Nearly halfway through…’ etc.

This is one of the ways in which I find myself feeling unseen as a parent carer. Most people, apart from those very close to our family, still assume it’s the same for us. This is not their fault. They couldn’t possibly know that weekends mean no night care, often no respite (although we do have enabling days), and no on-call medical team that know our child.

Mornings normally start between 5 and 6 for us, if it’s been a good night. If it’s been a bad one, one of us could have been up from midnight and the other will take over around 4.30. Today we were in bed at 6.30 and all was quiet. It felt like an unbelievable luxury. Thanks to our body clocks we were both wide awake and reading, which felt like a total treat.

In the week, there is time for rest after an early morning. The school car comes to pick up our daughter at 8.30 and then we go to work, or get on with household chores if it’s the end of the week when I am not at my job.

Work for us is respite. It really is.

I’m not saying this for effect or to demonstrate how tough our lives are, but we are both lucky enough to have creative jobs, working with great people, and both our jobs have nothing to do with the world of childhood disability.

When our daughter’s seizures are bad or we are living on the edge of another hospital admission, I get the Friday Night Terrors, knowing that over the weekend, although there is an emergency care team about 5 minutes from our house (forever grateful that we live around the corner from a hospital), our daughter’s team are not there.

I cannot contact her epilepsy nurse for advice, or email back and forth with her consultant. Once, an emergency doctor in resus had never heard of a VNS (Vagus Nerve Stimulator – an increasingly common treatment for drug resistant epilepsies). In the past, the resus team have had to call her consultant at home for advice as her epilepsy is so complex.

In crisis times this makes weekends feel very exposing and scary.

On Mondays, I genuinely feel my shoulders drop as I can feel the weight of responsibility lift. When our daughter is at school, the pressure on us to be next to her at all time, watch and monitor her every move (both to prevent her from doing something dangerous, or to alert us to a seizure), is gone. Her care team are back in the office and services are around to talk to. I can move all of the care and admin forward as people who hold the key to our support are at their desks.

It’s now the Easter holidays and, while I find myself excited to be spending more time with my little girl (she is gorgeous and amazing), I know I will stumble out the other side with jelly legs, completely depleted of emotional and physical energy.

I am currently working on launching a campaign for special schools to be given funding to provide flexible in-built holiday provision as needed throughout school holidays. Any current provision, where it exists, is often patchy and inconsistent. I am hoping that if, one day, we could see something like this rolled out, we may reduce those pre-holiday Friday Night Blues just a little for parent carers that experience it.    

I have just returned from Ikea. It was a simple trip out with my daughter and her carer (it would be impossible to do this on my own; my heart rate would be through the roof). It actually went pretty well i.e. without major incident.

We did have to change our plan when we arrived by buying her a full hot meal that we had not intended to. She is used to going there to eat, it’s one of the few places informal enough that we can just about make it work. So, when we arrived, she understandably dragged us to the café. It made complete sense to her and there was nothing I could do. Refusal would have meant a heart-wrenching meltdown and her completely refusing to move. This is not because she is ‘spoilt’. It is simply that she does not have the understanding or communication for us to be able to explain to her that we cannot always have a meal in this place. She would be bewildered and extremely sad. It would not make any sense to her. So we have to ‘give in’.

This is a really hard thing to get used to and to explain to others.

It is unimaginable to most people that you have to do this but there really is no kind alternative once you are in the situation. The only alternative is going somewhere else where she does not have the food association. I would love to be able to gently explain to her, as I could to a typical nine year old, that we don’t always eat out because it is a treat, and it is expensive, and that we will make a nice tea at home.

The fact that her understanding is not even close to this at least makes our course of action clear cut. It does not however, help me with the stares from others as she marches past the queue straight to the food counter. There is nothing I can do. I am ready with my lines, rehearsed and ready to go if anyone confronts me, but silent judgment tends to win out, and people simply just look. My heart rate rises, I feel defensive, sad and on show. Part of me wants to grab a chair and give a speech to (what feels like) the crowd of people staring, to tell them she has a rare syndrome, that we deal with seizures most nights, that the fact that she has fewer words now, at 9, than she had at 3, makes my heart so painfully sore. But instead I crouch down to her, look at her beautiful face and talk to her. I try to focus solely on her.

Today’s trip went largely without incident but I am still settling down from it.

I realise that this is because, when we are out with my daughter I carry a constant feeling of anticipation, ready for something to happen at any moment. A display tipped over, glass smashed, other’s personal space being invaded, a seizure, breaking free, 25 minutes refusing to move, wince-inducing yelling, turns, stares, tuts. It’s only when we shut our front door that I can begin to relax. I feel exhausted.

On the way out of the shop, my little girl was beaming on the escalator. I took photos as if we were at a theme park. My heart soared to see her so happy. Herein lies the secret joy that others don’t see.

I do believe this specific type and level of anticipation to be exclusive to having a disabled child. As with so many other aspects of our lives, this can make it impossible for others to empathise with. In the meantime, all we can do is focus on our child. For that is where the magic is. 

The picture depicts another recent trip to Ikea where an ill-thought-through ride on a flatbed trolley resulted in a 20 min delay in the car park, as our daughter refused to get off.

I have read (seen on TikTok) a few times in the last week the idea of not feeling like we need to ‘behave like summer’ when it’s winter. It’s the idea that it is ok to listen to how a season, or a situation makes us feel and respond to that with what feels right. So in winter, not feeling like we have to find more energy to go on a hikes, to keep pushing ourselves and challenging ourselves (unless we really feel like it), but to give ourselves permission to do what feels good.

For me that looks more like blankets, loose fitting trousers, fairy lights, a buffet of sweet and savoury snacks, and a book (ok, it’s often my phone, but I am trying to get better at putting it down). I am still finding time to do some exercise and getting out for sun on my face whenever I can, but I am not pushing it.

I have been thinking about this idea of how ‘doing what we need to do’ relates to being a parent carer of a disabled child. For many parent carers (I will guess most) life is frequently up and down, often lurching sideways.

I’d love to hear a shipping-forecast style report of how a parent carer’s week looks.

We all know that storms feature heavily. What I am learning is that my response to these weather-events, or darker seasons, is very important. This isn’t so much about the feeling bit. I of course can’t control my initial reactions when our little girl has a seizure, or the anxiety I feel when we are out in public and her determination eclipses everything. And it is important I allow myself to feel the deep sadness when it arrives. But the doing bit; what I do and how I look after myself during these times, is something worth focussing on.

I have had to accept that I can’t push through it all by living life as normal during these difficult times. I have to dial it down, say no to things (sometimes things that I had already said yes to), surround myself with my inner circle of family and friends (only those I am comfortable to cry snot into the shoulders of) and hunker down while the storm, or the cold, dark season, does its thing.

Once things start to calm and lighten I can emerge a little more.

My tendency in the early days of this storm-weathering was to throw myself back into life and try to catch up. To try to prove that having a disabled child hasn’t changed what I can do, that I’m still the same person. Except I am not. So I don’t do that anymore. It is too tiring and it serves no one. Instead I try to follow my instincts, which more often than not tell me to get some snacks, find a blanket, switch on some fairy lights, and rest. 

I wanted to dedicate a post to this form of self-care that I believe becomes even more important when you have a disabled child. It’s dawned on me in recent years that I need to keep as physically strong as possible as our little girl is starting to become not so little. She’s now nine and a meltdown on a pavement is no longer solved by scooping her into her pushchair for safety.

I need to be able to move fast to catch her if she bolts, or if a seizure starts. My motivation is now more about the mental health benefits than the physical ones. I started exercising ‘properly’ about three years ago. Prior to that I dabbled, because I felt I should, I never really enjoyed it and also knew I was not doing enough.

I hated PE at school.

Now I look back, it was because I thought I was bad at team sports, got picked last, and felt like a burden to the side I was on. Not a great way to foster a love of movement. Along with thousands of others like me, it gave me a long-held dislike for all forms of exercise. This was of course illogical as I had conflated competitive team sports with lovely things like going for a swim, cycle or a walk.

Now is the time of year when exercise is talked about the most; I don’t think that pressure is helpful. Here are five tips from me, as a relatively new ‘exerciser’ on how to build it in to your life:

1. Enjoy it.

It’s the old cliché but pick something you like. If you hate the thought of anything, pick the thing you hate the least and give it a go with some things to soften it. For example, walking with a podcast you love (if you want a laugh and virtual company from other parent carers, try ‘The Skies We’re Under’ podcast), or swimming with a friend.

2. Plan

in your next activity when you finish each one. When I finish a run or walk, I mentally calculate when I will aim to do my next one. I normally have a few days break in between. If for any reason I cannot make it, then I reschedule for the next day. With things like classes it’s a bit more straightforward as you can book in advance.

3. Be honest with yourself.

If you are not using a membership, cancel it and do something else. I do classes at my gym but for 6 months had being paying extra to go to the gym itself. I never got there and kept feeling bad. In the end I removed that bit from my membership and stuck to what I love – classes. 

4. Build up gradually.

I can be a bit of an enthusiast and when I first started I got overexcited and did too much, causing me muscle pain.

5. Team up.

Often committing to going for a walk with a friend helps me stick to it. You can end it with coffee and cake then too.

6. Balance it.

1. When I finally discovered running I thought that was all I needed to do. A few injuries later, a wise physio told me that if you are over 40, you can’t just do running, you need to balance it with some strength too, to prevent injury.

The benefits? There are so many. For me it’s my mental health. My anxiety has been so much better since I have had a regular exercise routine. When the stresses of being a parent carer become too much I know I now have something I can easily do to help me. Sometimes it’s a 10 minute walk in the dark and rain, but I never regret it.

As my social circles have expanded over the years, I have become more conscious when it comes to festive greetings. Instead of wishing people a happy Christmas on an email, I tend to wish them a relaxing break or a good holiday. This is because, particularly when I am talking to people professionally, I don’t know if they celebrate Christmas. I was responding to a parent carer recently with whom I work on a university research project, and started to write ‘I hope you had a relaxing break’ only to realise that of course this would be entirely inappropriate. She has a disabled child. I imagine she is feeling the relief of the holidays coming to an end as much as I am.

It’s important to say here that we had the most gorgeous festive season, our little girl had a seizure-free Christmas and Boxing day which was a treat.

There was so much warmth, cosiness and cheekiness.

I loved it. But I am also still in the middle of what feels like a giant exhalation as school has started again. I feel utterly strung out, I have sensory overload from the constant and very loud demands, the grabbing of my hands whatever I was doing, being dragged off the sofa every time I tried to be still. It is not possible to describe the mental, emotional and physical exhaustion this causes. If parent carers are reading this, I don’t need to describe it; they know.

We had been unable to find an enabler this Christmas holiday so, while we had care support at home, we had no respite. There’s a huge difference between care support (which I would say takes the pressure off about 20-30%, depending on the carer’s experience with my child) and respite or enabling which, for the hours my daughter is out of the house, removes 99% of the pressure (I reserve 1% for the anxious phone-watching).

I thought we could manage it.

While we did physically get through it, I am still taking stock of the price we have paid by having no break. I have taken myself off for more than a few walks in the pouring rain to get some respite. During this time I have concluded that it makes absolutely no sense that special schools do not have in-built provision to support students and families over the holidays. I have extensively written on the fact that special schools are far more than simply schools.

They provide essential care and respite, much more aligned to the essential services of a care home or day care centre, where repeated and prolonged shut downs would be unimaginable. The school day is a lifeline for families like mine. Yet it is, at regular intervals through the year, snatched away for weeks on end, just because that’s what schools for non-disabled children do.

It’s nonsense.

My little girl has no understanding of why her school taxi suddenly stops coming, and why she can no longer see her friends. Due to her severe learning disability, I have no way of explaining this to her. She then looks bewildered and confused when it starts up again (while I am close to tears with relief, and sadness at needing school so much). I would love future governments to stop and consider this, and for formal holiday respite to be in place for every special school in the country. Just one or two optional days a week would be life-changing for disabled children and their families and potentially could stop many reaching crisis point during the ‘breaks’.

Some charities do great work on highlighting this issue but I would love to see a clear proposal and lobbying for real change that tackles it properly.

Leaving families with wildly varying resources to recruit, train and manage private enablers (if they have been lucky enough to secure funding in the first place) is unrealistic and unfair. We need a more equitable, predictable and reliable system to remove the pressure. It’s way overdue.

Before I started my role as a parent carer (one for which I did not apply, was inexperienced in, and felt ill-equipped), I took for granted, like many of us, routine, predictability and to largely have control over my day to day. The day my daughter had her first seizure was the day that this control vanished. I knew in my gut that things would never be the same again, and that I could not stop this bullet train of change that I found myself on. I did try.

I thrashed around in my head, trying to think of a way to get out of this situation which seemed impossible and horrific to me. Googling cures, outcomes, possibilities, support, desperately trying to grab on to something solid and certain. But there was nothing. Everything was in disarray. I had to give up for a bit, to relax and stop fighting. Like devil’s snare in the Harry Potter books, the harder you struggle against it, the worse it gets.

I found that going with the flow released me.

Of course, I haven’t given up fighting completely. I have simply stopped fighting against what I can’t change. I still reserve and deploy plenty of fighting energy to get my daughter what she needs, and to advocate where I am able, for other families and the childhood disability community.   Giving up the fight against things I cannot control however has been liberating. I still feel a pang of frustration, annoyance or anger when my plans are scuppered by a surprise seizure, but I quite quickly let it go now, reorient myself and move forward. Importantly, I make a mental note to rebook plans or treat myself in some other way as soon as possible when the crisis has passed. I make sure to do this; I’m strict about it.

I see it as vital to my wellbeing.

I also consciously try to go with the flow when my daughter’s disability causes other life stresses;  broken goods in a supermarket, lying on a pavement (or road), spilt (deliberately poured) liquids, ruined clothes (hers and mine), three changes before getting to school, TV being pulled on the floor. I don’t always manage it, but for the most part I do. I think what helps me is having a conscious policy that it does not matter. I’ll sometimes say that in my head – ‘this doesn’t matter’. A bit like when I get a parking ticket, I do not have the reserves to expend energy on getting annoyed or angry. Those feelings are horrible and simply add stress.

This ‘going with the flow’ mentality has taken me years to learn and I still have to work hard at it, but I know it helps me hugely. In the same spirit, when I do of course find myself screaming internally or stamping my feet when my plans have dissolved once again, I will not let myself feel bad about my reaction.   This festive season I will be drawing on all of this learning to remind myself that, Christmas is ultimately just a day and, despite what the advertisers will have us believe, most people’s don’t happen without a bump or two along the way. Here’s to a messy, bumpy, happy Christmas.  

For many years, Taz, my daughter, has loved swings at the park. Like many children with a learning disability, she enjoys the sensory feedback and the motion. She particularly loves the toddler swings with the little frame around her middle for security. She’s now nine and, despite some passionate attempts to propel herself into them, has outgrown the toddler swings (along with the toddler seat in supermarket trolleys, much to her indignance).

We have had to graduate to the basket swings that not all parks have. She enjoys these but not as much as the little swings. I had always assumed she would need these types of swings forever. Last week, she was watching her sister on the big swing (the typical swing that most children eventually learn to use). She walked over to the one next to her sister’s and tried to get on, we duly lifted her on and stood right behind her while she held the chains.

She wanted to be pushed.

We started to gently push while I welded my hand to her back to stop her falling out. She pushed me away. Before I could absorb the scale of the achievement, we were pushing her on the big swing; her, and her sister, looking absolutely delighted.

She held on tight and swung for at least ten minutes, we drank in the joy and took loads of photos. I never thought she’d be able to do that. I often forget that despite her learning disability and the huge setbacks and regression that seizures can cause, she can still learn and progress.

Her determination and spirit is fierce. 

About a month ago Taz’s new enabler took her out. She returned home quite shaken up (the enabler). Due to a malfunction with her car, the car keys got locked in the car along with Taz at a supermarket petrol station. Thanks to some extremely quick thinking, she soon had keys being driven to her and someone on hand to safely smash a window in case fast access was needed to Taz (e.g. a seizure).

In the meantime, a member of supermarket staff who was among the team of people she’d recruited to assist, asked if there was any way they could encourage Taz to let herself out of the car seat, crawl across the back seat and open the door (there was a child lock on Taz’s side). If this had been me, I’d have said no way, my largely non-verbal girl simply does not have that level of understanding. But our enabler, as all the best support staff and educators do, has a far more open mind about Taz’s abilities and wanted to give it a go. She suggested a packet of Wotsits, Taz’s most coveted food (she’s rarely allowed them on the ketogenic diet she is on for her epilepsy).

A grab bag was produced and the coaxing began.

Cutting a long, and presumably very gripping scenario short, Taz wiggled out of her booster seat, made her way across the back of the car and calmly opened the door. My eyes popped when Taz’s enabler relayed this to me shortly after Taz strutted through the door with her giant bag of Wotsits. It gave me a lot to think about.    

The obvious moral of this tale is to presume competency when it comes to learning disability. I’ve done a lot of thinking lately about what this means for us and I know I need to open my mind about what our little livewire can achieve. Who knew how powerful Wotsits could be?

‘Parent carer’ is a term widely used in professional circles to describe a parent of a child with a disability. Many parent carers do identify as such, but not everyone.

Some people have not heard of the term, or believe that as a parent you care anyway, so see it all as part of ‘the job’. It is vital that we continue to recognise parent carers as having a vastly different, and normally far more difficult role, than parents of non-disabled children.

Being a parent carer is, certainly in my experience, an entire job in itself. Add that to the ‘typical’ role of ‘standard’ parenting and you’ve got an incredibly full plate. The physical load (the extra cooking, cleaning, appointments) and the mental load (the coordination of services), combine to create an enormous weight for anyone to carry.

Unlike most typical jobs, this role is charged with emotion and can give you soaring highs and crushing lows, often in the space of one day, or an hour. So it is vital then, that people around us, family, friends, public services and businesses, recognise this.

At present there is still much work to be done here.

Two examples spring to mind. Our local authority used to class parent carers as ‘carers’ and the local carers service was open to us. This offered subsidised counselling, a token wellbeing payment (which although small was significant for so many) and a raft of other support.

They also completed carers’ assessments. In the last few years this has been changed to exclude parent carers from the local carers offering. This has left me perplexed and cross, to put it mildly. The anger comes from the fact that it makes me feel unseen. Some people (I am guessing none of them parents of disabled children) have decided that parent carers do not qualify for this support.

A parent carer role is often for a lifetime, is 24/7 and involves more fighting and advocacy work than I could have imagined. This sort of exclusion leaves me thinking that they do not understand this, and see our role as just part of being a parent. Note to self – write to MP on this.

We visited a family attraction recently and wanted to bring my daughter’s carer with us.

. My little girl requires 2:1 care so needs me plus another person on a day out. The attraction’s policy on carers admission fees was as follows: Students and carers: £2 discount. I could not believe what I was reading. Carers and students were lumped together as if they have the same requirements. I do not want a token discount for my daughter’s carer. I should not have to pay; she needs her there as much as she needs her disability buggy or epilepsy helmet. Another note to self – write to attraction.

These two examples show there is much to be done in educating the wider community on how the role of a parent carer is so different from that of a typical parent. As parent carers, we can all play our part in helping to get the word out there, but we shouldn’t have to of course. It’s another ‘to do’ on our infinite ‘lists’.

No one understands this like other parent carers, which is why communities such as this one, forums, charities and groups are so vital. I love it when I see another parent carer out in ‘the wild’ and we share a look or smile, knowing that someone else gets it. When you know, you know.