When our daughter was first diagnosed with epilepsy, we were in a tailspin of fear and confusion. We did not know why she was crashing to the floor 20 times a day; tests were being done and by the look on the doctor’s faces, and the room full of people, I knew this was not ‘just one of those things’. 

At some point during this blur of terror, we were introduced to our epilepsy nurse. Let’s call her Sarah (not her real name).

My husband met her first and I clearly remember him saying on the phone to me, (he was at the hospital and I was at home with our other child), “I’ve had a brilliant chat to Sarah, she’s lovely.” I knew at this point that she was going to play a significant part in our lives, but I did not know quite how instrumental she would be in us living with this terrifying condition. 

Epilepsy nurses are specialist nurses who support people, and families of people, with epilepsy. I could not have foreseen the pivotal role that Sarah would play in our lives.

Sarah is our first port of call for just about anything.

Here are just a few of the stand-out ways that Sarah has helped us over the last 7 and a half years that she has been in our lives.

• She is on the end of the phone / by our hospital bed / at our daughter’s school when things go haywire. Our daughter’s seizures can get very bad at any time, and Sarah is always there to help us and guide us through. She has listened to me cry in despair on the phone in the car park outside of my office; she provides perspective, reassurance and practical advice, with our wellbeing front of mind, as well as our daughters.

• She has empowered us to live with epilepsy. This is a terrifying condition to live with. You could end up shutting yourself away and not living life, but Sarah has given us the confidence to do things. I always remember a time when a hospital consultant (who did not know our daughter) suggested we think about cancelling a (local) camping holiday after our daughter had been in hospital for a seizure. I was gutted, and found myself waving goodbye to the rest of the family as I prepared to stay at home with our daughter. Then my phone rang. It was Sarah who had heard what had happened.

She reassured us that of course we could, and should go.

She then started to help me make practical plans about how we may get to the holiday ‘could you meet them at junction x’ etc. I felt so cared for and thought about. It is hard to describe how life changing this kind of support it. We went on holiday (which was without incident) and had the best time.  

• We once accidentally gave our daughter too much medication.  Sarah was a calm voice on the phone, reassuring us that she’d be fine and we were not the only parents to have done this (she could hear the guilt in our voices and knew we needed reassurance).

• We have, on more than one occasion, forgotten to order meds. Sarah never makes us feel bad, she just sorts it out. I can almost see the twinkle in her eye / kind eyeroll as she knows we can be a little scatty about these things. She handles it all with such kindness as she knows the last thing we need is to be made to feel bad.

• She works directly with the school nurse to ensure all our daughter’s needs are met and to reassure the school that they can handle things. I don’t have to get caught in the middle, this is a huge weight off my shoulders.

• She writes letters, reports, whatever we need to help us to get the support that our daughter needs, be that for DLA or EHCPs.

As I write this, Sarah is holding an online training session for all of our daughter’s new enabling team members.

This is the third session like this she has done for us.

Reading this, it sounds like a full time job to be a nurse for one child. Sarah’s case load is in the hundreds. She is juggling all of this, responding to us and other families crises and day to day needs as they suddenly, and without warning, arise (epilepsy is like that). I can only imagine it is like a gigantic game of extremely fast whack-a-mole, with Sarah a blur in the middle, as she tries to keep all of the families afloat.

Through my networks of other parent carers I know that in some areas, there are no epilepsy nurses. This is unimaginable to me. We need many more epilepsy nurses, not just in areas where there are none, but we need more to support those who are already carrying out this super-human role. 

I genuinely could not imagine life without the support of our epilepsy nurse. 

Epilepsy nurses: you are AWESOME.

I saw a social media post the other day that said: “I swear special needs parents could run all the large corporations and several medium sized countries if we weren’t so tired.”

There’s something in this.

If you’d asked me what skills I thought I might develop as a parent carer, I would probably have said things like patience, resilience and juggling (metaphorically; although catching stuff, coordination and dexterity plays a part in getting through the days too). I had not foreseen the skills I would need in advocating for my child both in writing and verbally, diplomacy (telling doctors that while I am really grateful for their input and thankful for the NHS etc etc., I don’t agree with the plan) and, most recently HR skills.

Our long term enabler left recently, she is awesome and is pursuing other ventures so we had a very sad goodbye. I quickly realised I had made a rookie error in only employing one enabler.

This meant that when she left, we had no respite.

I have spent the last two months finding a new team of enablers. That has included:

• Advertising the role – I did this only within trusted networks
• Interviewing people
• Trying to fit all the pieces of the puzzle together so that all shifts are covered between five (yes, five) different people
• Setting up payroll, contracts, DBS checks and initial introduction sessions
• Setting up online training for all new recruits with my daughter’s epilepsy nurse

This is a lot for anyone. For parent carers to have to do this sort of stuff on top of our caring role and the mammoth amount of paper work we have to do day to day is beyond exhausting.

It has made me reflect upon the incredible journey we go on as parent carers, and the skills we gain along the way. Only there is no manager saying well done, giving us training where we need it, or rewarding us with a pay rise or promotion.

This is just staying afloat stuff. It mostly goes unseen.

There is also a bigger piece about the skills parent carers can bring to workplaces and the need for employers to recognise this and harness these talents. There is much mutual benefit to be found here; as a working parent carer myself, I know the value of being able to step out of my caring role for eight hours and use my skills in another way. I can also make sure that I use my voice in the corporate world to speak up for the disability community.

If we’re not in this world, with a seat at the table, then we are at risk of being overlooked. I will never not speak up.

In most rooms that I find myself in, I always feel like I don’t quite belong.

When the conversation is steered towards parenting, no matter the company I’m in, I am always a bit out of place. Anytime I’m surrounded by other parents discussing all the “typical” childhood things, I can imagine what an alien who crash-landed on our planet would feel like. Everything is foreign and I’m lost.

Even when attending support groups with other parents of children with disabilities, I’m not entirely at home; I can’t completely relate. I realize that no matter the degree of a child’s disability, whether it be mild, or more severe like my daughter’s, all parents lose sleep and worry immensely about their child’s future.

We’re all akin in that way.

On the flip side, the medical diagnoses and host of disabilities that I know well are rare and uncommon, even in gatherings of support.

There is one place where I never feel unfamiliar; a place where I feel like my family truly belongs. At our incredible outpatient therapy center, Kidnetics, we are always amongst kindred spirits and people who just “get it.”

Once a week, for three hours, my daughter, Ryleigh, and I spend time enveloped in this joyful world where we genuinely fit in.

Things happen there that I never experience anywhere else.

Last week, as I was pulling into a van accessible parking spot, I noticed a familiar mom pulling into an adjacent one. Knowing that both of our children use wheelchairs, we instantly worried about each other’s convenience.

We simultaneously jumped out of our vehicles to make sure that neither of us had taken the parking spot that the other needed. I wanted to ensure there was room for her son’s wheelchair ramp, as she was concerned at the amount of room for my daughter’s. We both had the intention of exchanging parking spots if needed. Having both experienced the feeling of being in a “tight spot” before, neither of us wanted that for each other.

Mutual compassion was shared, and it was such a warm reception.

As I walk through the welcoming doors at Kidnetics, pushing my daughter, carrying a bulky swim bag, backpack, lunchbox, portable oxygen tank and communication device, I am completely weighted down. Someone always offers help; grabbing the door for us, and I do the very same for any caregiver that I see, trudging in my shoes.

When I haven’t had enough sleep (or coffee!) and I know the bags under my eyes are particularly evident, and I show up dressed in old leggings, no one cares. I glance around and see the equivalent in some of the other parents; we kindly meet each other’s glances in solidarity.

Conversations develop effortlessly there with other moms about adaptive equipment and assistive technology. Autism, Epilepsy, and genetic disorders – all topics of discussion that I’m well-versed in.

This is a place where I can share and reciprocate. The lobby isn’t filled with stares or whispers; it’s filled with acceptance and comradery. No one’s life is strange or weird there.

Children watch each other and it’s obvious that they possess a beautiful trait that most human beings lack.

They don’t see “different” or “less than.”

They only see each other as friends. They only know LOVE. Ryleigh smiles elatedly at every child she encounters. She gets handshakes and she gives high-fives.

They are free to be themselves, completely, and they are recognized and loved for who they are.

Our therapists there work together as a cohesive team to treat Ryleigh. They are an integral part of our village; they are an essential part of our tribe. They understand the highs and lows; they lend support and encouragement through our struggles and our wins. Our group of dedicated professionals puts forth great effort to know my daughter, and they are her cheerleaders.

They see me too.

Generously bestowing knowledge and sharing necessary tools with me to help her achieve success and gain independence.

Every family deserves a place where they can feel at home, like we do at Kidnetics. A comforting place where our children are not only accepted as the wonderful, unique individuals they are, but also CELEBRATED. All families need that special place, where we belong.

Recently, the Chancellor stated that he wanted to make it easier for people to get back into work. Without going into the boring details, one of the people this covers is the Dude’s amazing, long suffering and awe inspiring Dad.

As the Dude’s main carer, Mr V gave up his job over 6 years ago to become our son’s full-time carer; for us it was a stark but simple decision to make. Too many hospital stays, too many appointments and too much time at work missed meant we were both at risk of losing our jobs – as the higher earner, it made financial sense for me to continue to work full-time (gah!) and for him to hand in his notice. Overnight, our family income was slashed.

My boy’s Dad usually starts his day around 6am, if not earlier, when he gets up to have his own breakfast, sort out the mornings medications, the Dude’s breakfast, and to get him up and ready for school while I get myself ready for work.

He then acts as a transport assistant, joining our boy in his taxi to and from school.

As his parent, he is allowed to administer the lifesaving medication and oxygen that is needed in the event of a seizure, that his Council-provided assistant/driver are not. Once home, he does the usual housework/dishes/laundry, batch cooks and blends meals for our son, keeps track of hospital appointments/medication levels/orders with pharmacy. While I am at work, he deals with all the meals, medications, bathtime, etc. The only things he doesn’t manage on his own are therapies such as physio, developmental therapy etc., as they require us both.

If he was a paid carer, he would be paid the national minimum wage.

This, anyone will tell you, is pittance for the work carers do and for how much of a difference they make to our lives. However, as an unpaid parent-carer, all he can claim is carers allowance – until this month this came in at £69.70/week. That equates to less than £10 per day. If he wants to work to get more money coming in, he can only earn £132/week for 2022/23.

To put that into perspective, at minimum wage that is less than 14 hrs a week. Where do you find a job that allows you the flexibility to work around a disabled child with complex medical needs, while only working 14hrs a week? This week he spotted a role at a local discount retailer restocking shelves, 4 hours in the evening for 4 days a week. But it would mean he would go over the threshold and lose carers allowance. After fuel costs etc are taken into account, it would leave us worse off.

Sadly, common sense seems to be missing here.

The obvious answer is to increase carers allowance to a meaningful amount, and to allow carers to claim for more than one person if they care for more than one person! Our loved ones save the economy billions by staying home and caring, instead of relying on social care or the NHS to foot the bill. Isn’t it time that they were recognised for the sacrifices they make?

Summertime is here. Kids and parents everywhere are reveling in relaxed routines and all the exciting warm-weather activities that the season brings. School is out. A tremendous perk: evenings can finally be enjoyed without the stress and strain of completing HOMEWORK.

Well, at least for some of us.

Homework in my household doesn’t consist of the typical tasks that most 12-year-olds endure. It never has. And it NEVER stops.

My daughter hasn’t spent the past 10 months learning about dividing whole numbers, decimals, and fractions.

She hasn’t been burdened by memorizing grammar rules, parts of an atom, or the beginnings of civilization.

All throughout the school year, during every holiday, and over the course of the summer, we work on mastering subjects that literally impact every facet of her daily life.

While attending multiple weekly therapies, I diligently notate every session.

Her team and I discuss all the ways to implement activities at home to help in developing her skills. Children with multiple disabilities, like my daughter, labor tirelessly in learning to do things that most of us take for granted.

Our daily homework is all about learning the most important lessons; it continues into the months of June and July. We can’t afford to take a lengthy vacation from it.

Navigating her AAC device and modeling vocabulary so that she can have her own voice…

Completing sit-to-stand transfers for strengthening…

Donning her orthotics and using her gait trainer to practice walking…

Working toward the goal of someday walking independently…

Practicing core muscle exercises and OT blowing techniques in our quest to achieve some success with potty training…

This is just a portion of the assignments we tackle together, perseveringly.

My daughter keeps right on working hard and continues her learning into the hot days of summer vacation. I greatly admire her strength and her tenacity.

While the homework of gaining independence and mastering daily living skills continues, I remind myself that she also deserves to take breaks and to be a kid, too.

She needs time to just lounge in her PJs, watch her favorite YouTube videos, and snuggle up with her most cherished books.

These moments are equally vital, for both of us.

Some days, I feel weary and tired. I worry that I’m not doing enough. My back hurts, my brain hurts, and at times I feel inadequate in my carry-over methods. This work is critical, so I dig deep and we push on.

During one of our recent sessions, my daughter’s therapist nearly brought me to tears with words of encouragement, out of the blue.

“She’s doing so well and making tremendous progress. I’m proud of you both.”

It was a simple comment, but in an instant, I realized how important our homework truly is.

It can’t only happen once a week in a clinic. The lessons and the hard work must be carried over into real life. With my daughter, repetition is key. It may take us 500 tries. It may take us YEARS of practice. But we hold on tightly to hope because things will happen in her time. When her eyes light up and I see a method finally “click”…When things finally start to fall into place…When I witness a new skill unfolding before my eyes, it’s absolutely indescribable. It takes my breath away.

A significant goal of mine, as her mom, is to help her achieve some independence and to ultimately make life easier for her. Every second and all the energy poured into completing this meaningful homework is infinitely worth it.