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.       

I have always found epilepsy quite a nice word to say, it sounds almost pretty as you speak it. While I knew it wasn’t a nice condition to live with, prior to 26^th December 2015, I had no idea of the impact it could have. This meant I was unprepared for the terrifying journey we were about to embark on.

My beautiful little girl had her first seizure at 18 months old. I was applying mascara at the time, I can remember that vividly.  My husband shouted up to me that she was having a ‘fit’ (we now know to refer to this as a seizure). She had her second tonic clonic seizure about two weeks later, just as my shoulders were dropping and I was starting to think that maybe the doctors were right when they thought it was ‘one of those random things’. Another ambulance trip, a huge list of tests. Terrifying tests with long waits for results.

My daughter is now nine and has complex and drug resistant epilepsy

She has tried at least ten medications, has been on the ketogenic diet for 5 years, has a Vagus Nerve Stimulator and has a severe learning disability.  She is wonderful and adored by all who know her. She has taught us so much and made me a better person in so many ways.

It’s epilepsy awareness month, so I’m going to share a few things I have learned about epilepsy, and some tips which may be helpful.

1. It is often a shape-shifting condition.

My daughter’s seizures have evolved and changed over the years; we think we see a pattern or some stability and bam, things switch again. It is hard to achieve, but where possible, try to take things day by day. A seizure happens, it’s horrible. Then it passes and there are peaceful times. Sometimes these are not long but there is solace to be found here if you can be in the moment.  

2. Doctors don’t know everything.

Make sure you have a doctor that listens. Good doctors are curious and know that the carer or parent of a child with any condition has valuable insight. Never be afraid to ask for a second opinion if something does not sit right for you. Oh, and if you are referred to as ‘mum’ or ‘dad’, and, like me, find this patronising, politely remind them of your name.

3. Find your tribe (at the right time).

There are numerous epilepsy forums and Facebook groups. When the time is right, they can provide a valuable source of support and guidance. I went on the groups too early in my journey initially and found myself becoming more anxious than I needed to be, reading other people’s stories.  

4. There are many medications and everyone reacts differently.

Just because a medication did not work for one person, it may be another’s miracle drug. Don’t fall into this trap on the forums when people discuss meds. Unpleasant side effects may occur for one person but not another. To dismiss a drug based on hearsay is not a good idea. Always discuss with your doctor. 

5. There are other treatments as well as medications including surgery, Vagus Nerve Stimulators and the ketogenic diet.

1. Epilepsy charities have excellent information on these so read up and don’t be afraid to bring them up with your doctor.

Epilepsy can be an incredibly hard condition to live with, but the right support and knowledge can make things so much easier. Epilepsy charities are an excellent starting point. One of my favourite sayings since diagnosis is: ‘this too shall pass’. And it does.     

The impact of being a parent to a disabled child has a huge impact on relationships, particularly with a partner.

I remember feeling scared on a few occasions after I realised I was a parent to a disabled child (we did not have a sudden diagnosis, it was a gradual process) when I’d read some statistics about break ups being more likely. I did not want that to happen to me and my husband and I wondered how I could stop this. I felt apprehensive about the future.

In many ways we have been lucky.

While there is an obvious day to day strain on our relationship and we certainly have more ‘spats’, on a deeper level we are closer than we have ever been. We have two types of strain on our relationship – one is the day to day; our daughter turning the house upside down, only one of us being able to leave the room at a time, taking turns to go to the loo and having to announce it first so the other person will not leave her side, smashed plates, poured liquids and whining.

The other is the more scary, medical side; seizures most nights, random daytime seizures, the heart-lurching calls from school, multiple hospital admissions (some terrifying). While both types of strain put severe pressure on our relationship, we have also found that it has made our foundation stronger. We are a tighter knit team, both determined that our daughter has the very best care and support.

I know this is not the case for all relationships and I realise that we are lucky that we have largely approached this as a team and, for the most part, agree on decisions for our child. We accept that we will argue and, as a counsellor once said to us when we did joint counselling, get ‘itchy scratchy’ with one another.

This happens most days but passes quickly thankfully.

I now know that it’s not a sign of our relationship being in trouble; far from it, it’s communication, albeit a little fiery at times.

Making time for each other has to be the most clichéd, yet, as clichés often are, sensible piece of advice we were and still are given. Most of the time this is watching a box set together. Occasionally we orchestrate a mini break if we can line up the care. Spending time on our own is also vital. Both can be challenging when there is a disabled child at the centre of things.

These days we go for the ‘mini wins’; a lunch together and a bit of TV if we are both working from home and the kids are at school, allowing our older child a bit more screen time when our disabled child is at respite, meaning we can chill together (watch more box sets).

The other key thing is finding a fair split of the increased mental load. I have written about this in another blog here.

I have had to accept that my relationship is different from most people I know. It is different but it’s certainly not less than. Exchanging that knowing look when someone not in our world says something like ‘will she grow out of it?’ or ‘I don’t know how you do it’; or when we encounter a professional we both find irritating, bonds us further and reminds me that we are a team.

The mental load is well documented but poorly understood. I remember a few years back, Women’s Hour on Radio 4 created an online quiz to reveal how chores are broken down in relationships. I duly completed it only to find that the split of chores in my relationship was more equal that I thought. I was shocked as I knew this not to be true.

I then realised – the quiz just asked about visible stuff, cooking, cleaning, putting the bins out etc. It failed to include the hidden chores, the mental load: organising presents for your child’s friend’s parties, filling out school forms, school WhatsApp groups (find me one with an even split of men and women), sorting GP appointments, dentist appointments – the list continues.

The mental load is largely carried by women. What mainstream media rarely if ever touch on however, is the explosion in the mental load when you are parent to a disabled child. I’m going to go out on a limb here and say it increases approximately by 6-10 times (not a scientific estimate but I bet I’m not far off).

This mental load is turbo charged, XXL, untameable.

This mental load is like no other mental load a woman is likely to see. DLA forms, EHCP forms (those two alone are weeks of work each), appointments, appointments, appointments, corrections, calls from school, pushing back, fighting for services, this list is infinite. It is unpredictable and often charged with painful emotion. 

Pretty early on into this journey I realised that I could not carry this on my own. I work part time but the time I had ‘off’ was barely enough to keep the basic stuff going, let alone the mental load that comes with being a parent carer. I felt like I had three jobs. I knew I had to split this with my husband. The key thing here though is I did not want to delegate.

That does not reduce the mental load for me, it merely makes me a project manager. I knew that if I asked by husband to book an appointment, or order more meds, he would. But it was the thinking of, remembering, asking and then (inevitably) checking and chasing that was the mental load. Meaning I may as well have done it myself. There is an excellent cartoon description of this here.

So, here’s what we did.

We split the main load into two categories – medical and social. My husband became Head of Medical and I became Head of Social (we actually jokingly call ourselves this and treat it like jobs, perhaps we should get business cards made). It has worked brilliantly.

By doing this my husband is responsible for doing all of the thinking, liaising, ordering, booking and attending of all medical stuff, from meds to appointments. I don’t think about it. If we run out of meds it is not my responsibility. While I attend medical appointments,  I do not book them.

I do all the social stuff, education, social care respite / enablers, DLA, EHCPs. There are frustrations, namely that medical secretaries will call me first, because I am a woman. I politely inform them that I do not deal with medical things and, while I of course complete the call so as not to waste NHS time, I request that next time they call my husband and that they need to update their records to specify this.

The last time I had to do this was a few weeks ago. We split the load about five years ago. Make of that what you will. It still enrages me that women are called by default.

I want to share this method in case it helps other families. Women continue to carry an unfair share of the mental load. I can only imagine what more we can achieve if this was more evenly shared.

Becoming a parent to a disabled child can sometimes mean the future we envisaged looks different. Things may look physically different if our children need special equipment. For us this was a gradual process and one which took some adjusting to.

Our little girl has severe epilepsy and a severe learning disability. On the face of it you may wonder what equipment she needs. Despite not needing as much equipment as many other families, we do have more than I could have imagined.

Here’s what we currently have; two special needs buggies, a helmet which she wears all of the time, a special feeding chair so her head is less likely to fling back during a seizure, a special bed that she can be zipped in to so she does not get out and have a seizure in the night, a drop harness for when her seizures are so frequent she needs to be held up, a heart rate monitor for focal seizures, a bed monitor for tonic clonics (her main type) and a Vagus Nerve Stimulator magnet.

It’s quite a list, especially when all of it (apart from the buggy) is for epilepsy.

Equipment suddenly invading your personal living space is difficult. For us it felt frightening, alien and most of all, I felt sad that we needed it. Without doubt the helmet was the hardest thing to adjust to.

It suddenly and clearly marked my daughter out as being ‘disabled’. It brings with it stares, questions and sometimes looks of confusion from others.

We started off having to use a bike helmet as she was suffering hundreds of drop seizures a day during Covid and the services simply switched off.

She now has a ‘proper’ helmet that she wears all the time.

At first my heart hurt every time I glanced at her wearing it. Now it feels part of her, and something that is there to help and to protect her. A friendly adaptation. We were brutally reminded of this last week when we, due to complacency, went to the supermarket without it (we’d had an unprecedented run of a few weeks without a daytime seizure). She refused to sit in the Firefly trolley and then had a big tonic clonic, hitting her head on the stone floor.  

We have always been adamant that we want the ‘best looking’ equipment possible. It is about dignity and having a right to express some style and personality where possible. It matters to me that my daughter’s helmet is colour we like and does not look grubby.

One brand of helmets simply make theirs in bright red and royal blue (both colours on one helmet). This makes me cross as I cannot imagine that many kids, or adults for that matter would choose this colour combination in clothing. It suggests the design is going for practicality and ‘bit of colour’ and that the makers have not consulted with people who need to use it.

It’s a good helmet in a soft fabric, but It feels like very little thought has been given to the fact that a child will need to wear the helmet day in day out.

Some children may love it or not care, others may be less keen.

The helmet my daughter has comes in three basic colours including black, so you can at least have an option. It’s still a very basic nod to style though. We have some cat motifs to sew on to her new one (which we have been waiting almost a year for) to customise it.

Professionals and designers must recognise the emotional impact that equipment can have on a child and family. I realise budgets play a part, but consultation with families and small colour adaptations for example, should not cost a great deal more.

It’s heartening to see the Firefly equipment in on-trend colours with clear thought having gone into the design (just look at the Upsee; I’d be going for the denim / rainbow combo). The difference this thought makes is far from just cosmetic, it has the power to shift emotions and ultimately make for a more contented family.

PS. Fancy designing an epilepsy helmet, Firefly?!      

Just as I was getting my head around the idea that my little girl would be starting her school journey at a specialist setting I was informed that school transport would be provided. What, free? From day one? But she can’t go on a bus or get in a taxi without me, that’s impossible. She won’t cope, I won’t cope. I’ll at least drive her in for the first week or two.

As with many things happening at the time, a professional would gently tell me that this is how it was done and no, I could not just drive her in for a while. Logistically that would be very hard with so many children with complex needs arriving at the school, multiple buses and taxis, and a highly choreographed routine of safely helping the children in.

So we had to put her on a bus, from day one.

We could not meet the escorts beforehand but they would be briefed (I do think they could improve things by allowing this to happen). So, as September rolled around, we found ourselves helping our tiny four year old onto a mini bus with a car seat. She had a lovely woman sitting next to her whose job it was to look after her on the way. Off she went. We cried, lots.

When she returned home she looked a little bewildered but largely happy. We’d done it; plaster ripped off and our daughter using school transport. About a week in, I had a call from our local authority to say her transport was being changed to a taxi. I pushed back on this saying we did not want more change.

Luckily they refused to budge and a taxi was sent for her.

I did not realise how enormous the part this very team would play in our lives for the years to come would be. That was five years ago and we still have that same taxi team. They are incredible; I feel so lucky we were assigned to that route.

I had always imagined that a school transport escort would be there in a reactive role, not a proactive one. By this I mean that I thought they’d maybe reassure an upset child, calm a shouting one and manage any medical issues such as seizures. Ours does all this of course.

I could not have imagined however that they would read stories, set up an activity centre for her in front of her seat with specially selected sensory toys, consistently use (and teach her) Makaton, attend specific training with her epilepsy nurse, learn the name of every single one of her care team, her sibling, two different grandmas and both of our cats, seek out a random song she is obsessed with on YouTube to help her settle – the list goes on.

Two new transport escorts have since joined and they do the same (although I’m not sure they have learnt the cats names yet). It’s a full on job. The drivers themselves are incredible. Calm, warm and concerned (and excellent drivers of course, in often very challenging circumstances). This is no ordinary driving job, it’s very specialised and it takes highly skilled people to deliver this service.

They also know all the names.

Towards the end of last summer the local authority casually informed me they’d be changing our school transport in September. I explained (strongly) that this decision had to be reversed. Thankfully they listened and reinstated our transport team.

I believe there is a real lack of awareness and understanding of the role that school transport teams play. They start and end the school day. That’s a big deal for any child, but for a disabled child it’s huge. Transitions can be extremely challenging; these teams are experts in this. They read the situation, adapt to make things as smooth as possible and leave anxious parents and carers feeling a little calmer, while getting the children safely to and from school.

Unlike more well-known key worker roles such as teaching staff and nurses, these teams rarely get the praise and recognition they so richly deserve. Thank you, transport teams, so much.   

I will never forget the day we waved our tiny four year old off on the school bus to her new special school.

It held so much emotion for us, the immediate concern about her going on school transport, and more profoundly, the grief we felt that this was not the school we had envisaged her going to when she was a tiny baby and we were starting to mentally picture what her life may be like.

Grief pours out of the gap between expectation and reality; perhaps being a parent to a disabled child is one of the circumstances where this experience is at its most intense.

My daughter has been at her incredible special school for five years now.

I am so pleased that we made that choice for her from the beginning. There was a temptation from us to want to ‘give mainstream a go first’ but, looking back, I know that was more because I was not ready to accept the situation rather than it being of benefit to her. In the end, we were guided by a senior portage worker and a SENCO from my other child mainstream school. They kindly and gently helped us realise that a specialist setting was what she needed.

My older daughter felt sad that her sister would not be joining her school. This settled, although occasions like joint sibling school photos were painful for her, when she knew that her sister would not be there. As those initial weeks went by and youngest settled at her special school, I started to realise a few things. I realised that she would escape the pressure of exams, the drudgery of revision, the pressure to ‘fit in’, the playground sniping, social media angst, the boring bits of learning, stiff and uncomfortable polyester blazers.

Instead she was being given a curriculum tailored to her and delivered with such warmth.

It features hydrotherapy, bouncing, chickens and guinea pigs. Every day she lives in the moment with a specialised team around her to give her the very best time possible. There’s a uniform if she fancies it but if she wants to board the school taxi dressed as a Gruffalo, that’s cool too.

My advice to other parents sending a little one off to a specialist setting in September would be – just wait. Allow yourself the time and space you need to feel all the feelings that come up for you. But please know that not only does all this get easier; it gets positively joyful. You have been given access to an exclusive club and a secret world that only a tiny proportion of people get to experience.

In this world you’ll find the kindest of people, the most awesome kids, and incredible families.

I genuinely find myself smiling to myself sometimes when I realise this. It’s not the individual things that make special schools special but the sum of the parts which create a deeply positive and enveloping energy that I have yet to find anywhere else.