Puberty has landed

Uuugh. Just when we thought we knew what the Dude’s pattern of seizures looked like, puberty has joined the party, turned all the tables over and thrown everything fragile out of the window.

It has been a relatively stable few years, seizure wise, for our boy. While we are (painfully) aware that we will never be able to stop the seizures fully, for the past 3 years or so a combination of medication and his VNS, together with dietary tweaks have kept him on a fairly even keel; since his spinal surgery last year however those pesky hormones are wreaking utter havoc.

Whether a combination of pain, hormones, teeth cutting through the gum (an issue for kiddos who aren’t orally fed being a delay in adult teeth coming in), the end result is seizure chaos. While it’s causing us to keep a closer eye on things, at school the repercussions are enormous.

Any epilepsy parent will tell you, probably through gritted teeth while grimacing, that care plans are something of a nightmare. Some are simple – giving paracetamol for pain for instance – while others are nothing short of the Devil’s own paperwork. Seizure care plans for a young man with multiple seizure types that present in ways staff haven’t seen before? You get the idea.

Recently, things have come to a head.

Surgery has meant he has better mobility of his head and limbs. Better mobility means he is moving about more. Moving about more has meant a lot of movements being misidentified as seizure-related. The care plans that were fine pre-puberty/pre-surgery and not fine any longer and need amending.

Like everything else in the world of SEN however, this is not a simple job. Due to safety concerns, the poor boy cannot attend school until the seizure care plan is amended; this will prevent him receiving too much rescue medication due to the care plan not being accurate, but also means he is missing his friends.

In order to change it, we need to liase with his epilepsy nurse. And the school nurse. AND his neurologist. There is not enough hair dye IN EUROPE to cover the amount of white hairs I am developing.

We always knew puberty could be a tricky time for our boy; friends who have already navigated this stage of life with their young people have filled us in. But nothing prepares you for how quickly things can change.

I am definitely not ready for my baby to be a teenager, but I’m even less ready to ride the storm that is potentially coming. On a lighter note, it would appear his voice stating to break making him sound like a honking goose is one of the funniest things the Dude has ever heard…

National Siblings Day

There is a day to celebrate our siblings and our relationship with them. This year it is 10th April. I have just one sibling. A sister. Two years older than me as I frequently like to remind her.

As I imagine is the case with most siblings, we don’t always agree on everything, we are our own people and have different views. When I reflect on my childhood though, I remember always having my sister to play with whether it be with our Pippa dolls on the lounge floor or going to the local park together.

As we got older, we’d go swimming or walk to the bakers to buy lunch in the school holidays. She was always there.

As teenagers we grew apart and had our own friends and boyfriends. As adults our lives took us on different paths and for some years my sister lived further away. We were in contact but each busy with our own lives.

Many years later and now in our (late!!) fifties we live barely a mile apart and whilst our lives are still quite different, we are probably closer than we have ever been.

I Have Two Sons.

My eldest James is 27 years old and has complex needs. He is non-verbal and has a severe learning disability. Harry is 24 years old. Their sibling experience has been very different from mine.

James was three and a half years old when Harry was born. Due to the severity of James’ developmental delay, Harry didn’t have a sibling to play with in the same way as I had. James wasn’t always able to do the things that Harry wanted to. There were some times when they were able to do things together that they both enjoyed.

I remember we had two child toy buggies. They would run around the house laughing and chasing each other. My door frames still bear the scars! Harry would stick cardboard boxes and yoghurt pots together to make instruments and James would think it hilarious and entertaining when Harry ‘played’ them.    

It wasn’t long before Harry’s abilities surpassed James’ and he wanted to play different games. What he wanted most was someone to play them with. We played with him of course when time allowed but it wasn’t the same as having playmates his own age.

When Harry started nursery and then infant school he loved to play with the other children. Such was his enthusiasm I think he often came over a little over zealous, even bossy and boisterous when in reality he was just desperate for them to play with him.

Once at secondary school, having friends back to our house could be difficult for Harry. James would go up to them and kiss them or sit on their laps. As a teenage boy Harry sometimes found this embarrassing then there was James’ meltdowns to contend with too, especially difficult for Harry when out in public.

Harry later joined a sibling support group at the hospice we attended with James.

This gave him the opportunity to go on days out with other children in his situation. Whilst he enjoyed them, I don’t think they really spoke much about the impact having a disabled brother or sister had on them. When James was 18 years old he could no longer attend the hospice so that finished for Harry too.

At times I felt sorry for Harry, conscious that his mates had their siblings to go and kick a ball about with or play their computer games whilst he had no one. The amount of time I spent looking after James severely impacted Harry. I wasn’t always able to take Harry to scouts or to a party because James was asleep in bed on his feeding pump. They may seem little things to other people but to a child they’re important when you don’t feel part of your peer group and the same as everyone else.

Many years on and the boys are now young men. James lives in supported accommodation. They don’t spend nearly as much time together. Harry keeps a listening ear on what’s happening in James’ world though, he has strong opinions and lets me know if he feels something isn’t right or James has been dealt a disservice. He will call me from work to check how James is if he is unwell or had an appointment. He’s not involved hands on in James’ care but he likes to know everything is ok for his brother. 

Friday Night Blues

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.    

A letter to the new Mum on the ward

I saw you earlier as I passed the cubicle on the way to grab a coffee. I know this is probably one of your first times here, you haven’t yet had the chance to build the armour those of us who’ve walked this path for longer wear, the way when you smile you think you hope to hide the fear in your eyes, as if convincing yourself that it will all somehow be ok.

You don’t know me, but I recognise myself in you. You may have just heard your childs diagnosis for the first time.

You may have just been left reeling, or even relieved that it wasn’t all in your head, or that someone listened. I recognise the pale face and dark circles that speak of nights spent watching over your child, the strongest and most ferocious protector any child could ever ask for.

I see you.

12 years ago, I was you. My world had shattered and we were scrambling for a new ‘normal’ in the chaos of a life-changing diagnosis. The years have changed me for the better.

I’ve learnt that you are allowed to grieve for the life you dreamt about. It is ok to grieve for a child that is alive, to grieve what they have lost too.

But believe me, the love you have for your child will carry you both when you don’t think you can keep going. And the life we have now is better than we could ever dared imagine.

You are going to find strength you didn’t know you had. Even if you are naturally quiet and shy you will find your voice. You will learn resilience. You will see the beauty and the joy in the simplest of things.

Your child will be the greatest source of pride and joy you could ever imagine and you will absolutely develop a sense of humour that may be shocking to some but that will keep you laughing through the most difficult times.

And you will find your Tribe.

You will find friends here that will stay by your side through whatever is to come. The parents you will meet and forge lifelong bonds with.

The nursing and medical staff who together with you will become a formidable team.  You may never get answers to the questions you have now, the why’s, and the what if’s will always be there but they won’t always be so close to the surface.

It may not feel like it now, but you have been given the greatest gift imaginable. These incredible children are miracles. They are our greatest teachers and although I know you really wish you weren’t here right now, it really will be ok.

The Cost of Caring

Most people don’t ever expect to become an unpaid carer. I certainly never did. I had always been aware that there were people that did this for their family and friends and had a lot of admiration for them for giving their time and energy freely for those they love.

Beyond that though, I had no idea of the realities of what this responsibility entails. I had no idea of the vast number of unpaid carers there actually are.

The reality of this role that so often is not chosen but forced upon people with no other choice (even children as young as 5 years old) is much different than I ever could have begun to imagine.

The demands of this job, and I say job because even though the government refuse to recognise it for what it is, it is the hardest job that I have ever undertaken and the demands of it far surpass what is expected of any employee.

Even the most stressful care providing jobs within the NHS, staff are paid at the very least in line with national living wages and get to clock off for an adequate rest. A basic need and yet a luxury to unpaid carers.

The unpaid carer population (approximately 5million people in England and Wales) is over 3 and a half times the size of the entire NHS workforce (1.4million). Our thankless labour saves the UK economy £162 billion per year.

Almost an entire second NHS service.

Carers Allowance can be claimed when caring for somebody for over 35 hours per week, although in many cases the hours are much higher than that. Carers allowance is currently £269 per month for caring for somebody for 35 or more hours per week. The rate does not increase despite many probably caring for well beyond 35 hours. Some people the equivalent to 2 full time jobs. This is a paltry £1.92 per hour for 35 hours of the care they provide. The current national minimum living wage for over 21’s is £11.44.

For even more disturbing context, back in 2015 (national minimum living wage at £6.50 per hour at the time for over 21’s) a textile sweatshop was exposed in Leicester. They were paying their workers £3 per hour. Yes, an illegal sweatshop was paying their workers significantly higher than carers are given. This is meant to support them in their role and help them to provide for their loved one.

To say carers are criminally underpaid by the government would be an understatement.

The average weekly cost of placing a child with complex needs in residential provision is £7,739, with the weekly cost of an emergency placement costing £10,597 per week. That works out at £402,428 per year for nonemergency placements. Over a hundred times more than a carer’s yearly £3,991.

I, like so many others have given up so much for this role that I didn’t choose, that I found myself in by circumstance, and yet I don’t shy away from my responsibilities, for it was born of unconditional love for my son. Yet I feel as though this vital job I’m doing is completely disregarded by wider society. The option to select employment status as ‘unpaid carer’ has never appeared on any forms I’ve had to fill in, which cements this feeling even further, that this role simply does not matter.

The personal cost to carers is phenomenal. It affects every aspect of our lives from physical, mental, and emotional health, financial pressures, to social isolation. This list is endless. We are often carrying out complex medical care with subpar, if any formal training and often whilst extremely sleep deprived.

The pressure that carers are under is only growing and growing.

The pressure that carers are under is only growing and growing.

If this grossly unjust devaluation from the government continues, it will cost many lives. As pressures and burdens increase, inevitably many more carers will become too burnt out, sick themselves through mental, emotional and physical exhaustion and unable to continue, it will undoubtably be the collapse of the NHS entirely.

Purple Day and the Road to Epilepsy Awareness

Every year, March 26th is designated as Purple Day, a worldwide effort to raise awareness for Epilepsy.

I’m thankful that this cause exists, as it’s a day dedicated to sharing information and standing in solidarity with all individuals living with this diagnosis.

However, wearing purple and posting on social media for one day, out of the entire year, is just a small step in the right direction.

To continue making our communities aware, and to promote further research and treatment options, our little steps must become big strides. To create a difference in the lives of our loved ones living with this monster of a disorder, and their caregivers, we must do more to pave the road to awareness.

I never knew how to respond to a seizure until the night that one happened right in front of my eyes.In a desperate panic, I felt helpless as a tonic-clonic seizure suddenly took over my tiny, 10-month-old baby.

It was out of the blue, as they often are.

No rhyme or reason. Every muscle in her little body contracted violently as she lost consciousness. Her breathing seemed nonexistent.

It was completely devastating, and it changed me forever. The trauma and heartbreak that lasted for only a few minutes was burned into my brain for a lifetime.

They never get easier. No matter how many times you watch your child endure them, seizures are terrifying and gut-wrenching to witness.

As caregivers, we train those in our circles on the protocol to follow if a seizure occurs in our absence. It’s uncomfortable to talk about, but it’s necessary.

It could be lifesaving.

In accordance with the quest to spread awareness, and to teach others how we can walk this road together, these are first aid safety tips provided by the Epilepsy Foundation. Knowledge is power, and it would benefit ALL community members to know what to do if they encounter someone in need of assistance.

  • STAY with the person until they are awake and alert (remain calm, time the seizure.)
  • Keep the person SAFE (move them away from harm.)
  • Turn the person on their SIDE if they are not awake or aware (put something soft under their head, keep the airway clear and loosen tight clothing around their neck.)
  • NEVER put anything in their mouth or restrain them.

Call 911 if:

  • The seizure lasts longer than 5 minutes
  • The person doesn’t return to their usual status
  • The person is pregnant, injured or sick
  • Repeated seizures or breathing difficulties occur
  • Seizure occurs in water

I never hesitate to call for emergency back-up when I feel that it’s needed.

After 13 years of parenting a child with an Epilepsy diagnosis, and living with its looming, stalker-like presence in our home, I wish a cure could ultimately be found. Until then, I will give my all to help her battle this beast.

Parents make the BEST advocates. You’ll find us calling and writing to our legislators.

We share our stories and plead with them to put laws into effect to help our children. I’ve watched incredible parents fight courageously, pushing for bills to legalize medical cannabis and to mandate seizure first aid training in schools.

We have open discussions with doctors on medication side-effects. We strive to educate others so that our kids will be safe, receive better treatment options and maintain the very best quality of life.

On this road to Epilepsy awareness, we can help by recognizing Purple Day and sharing information that we learn with others. We can support families that live this life. Together, we can team up against seizures and help clear the path for those trailing this road behind us.

To learn more, visit www.epilepsy.com and www.purpleday.org

The Colour Purple

I Love flowers. Purple ones are my favourite. The colour purple is often associated with royalty, extravagance and grandeur. Dark shades are said to inspire power and strength while lighter shades are hopeful and optimistic. Psychologically purple inspires harmony, mental balance and stability.

There is a day to wear purple and this year it’s 26th March.

Purple day is a day chosen to educate and raise awareness of epilepsy around the world. It was initiated by a young lady called Cassidy Megan following her own struggles with epilepsy.

My family has also been touched by epilepsy. My eldest son James who has Wolf-Hirschhorn Syndrome had his first seizure when he was 17 months old. He’d had open heart surgery just a few months before and I was home alone bathing him. He was still tiny as growth retardation is characteristic of his syndrome. As I held him in the bath, he suddenly became rigid, his arms and legs outstretched. I don’t remember him making any sound or even any movement. I had never seen anything like this before and in my naivety didn’t consider that he could be having a seizure.

I wrapped James in a towel and I ran downstairs with him. I ran outside and I banged on my neighbour’s front window. My neighbour, a mother of three herself, wasn’t home but her young teenage son was and he called an ambulance. My recollection is vague now but I think my other neighbour arrived back home as the ambulance arrived and she came with us to hospital. She stayed with me until my husband arrived. He was working, on call as a gas service engineer, I don’t even recall how I got hold of him. We had no mobile phones 25 years ago.

Over the next few years James continued to have regular seizures. I say regular, they were every 4/6 weeks, not many I know compared with others who endure many every single day. We had emergency medication for him at home and I guess we got as used as you ever do to dealing with them as and when they arose. You adjust to living with the knowledge that it can potentially happen at any time, especially when James was unwell.

We then enjoyed many seizure free years.

I had hoped that was an end to that particular episode of ours and James’ life. But no. With no warning on 15th Feb 2019 James had another seizure. I wasn’t home. My husband and younger son were with him and at the time and I met them at the hospital. As James hadn’t had a seizure for so many years the ambulance took him in to be checked over.

No specific cause was found for this reoccurrence other than James had been on some different medication which had completely thrown his sleep pattern out of kilter. He was exhausted and falling asleep at all times of the day. We felt this had lowered his threshold and hoped it was a one off.

All was well for a further two years, then another seizure, this time without any justifiable explanation at all. Eighteen months passed and then James had two more seizures in an eight-week period. So here we are now as he is coming up to 28 years this year and he has started some daily epilepsy medication. I had hoped it would never reach that point but here we are. It’s still early days and after a very gradual increase of medication over the last few months he has just reached the advised dosage so it’s very much a wait and see situation and hoping we have things under control.

Here’s hoping on March 26th (and every other day) that purple will indeed bring peace, harmony and mental stability to my family. I will have to find something purple to wear.

It Must Be Nice

One task that comes with being the parent of a child with complex medical needs and disabilities is making countless, redundant phone calls. We spend A LOT of time scheduling appointments over the phone, being placed on hold for ludicrous amounts of time, disputing insurance claims, and tirelessly advocating for services and supports that our children need. On one of these recent, never-ending phone calls, the representative made small talk with me while she waited for her computer screen to load. To fill the awkward silence, she asked “What do you do for a living?” When I answered, “I’m a stay-at-home mom”, her short response caught me off guard.

“Hmph, it must be nice.”

I couldn’t see the representative’s expression, but I could clearly imagine it as a smirk. Maybe it was even accompanied by a sarcastic eye roll. In response, after I paused briefly to process her comment, I replied, “Yeah, it’s really hard work, but it IS nice.”

After we wrapped up the conversation and my claim had finally been resolved, I still found myself stuck on the remark about my occupation. Thinking of how she probably viewed my day-to-day life, (likely picturing me eating bon-bons in my pajamas), it made me realize that despite all the “hard”, it truly is the very best job I could ever ask for.

My back aches from lifting and transferring, but I get the sweetest kisses from my precious 13-year-old daughter.

My world is filled with loving cuddles, bedtime stories and holding hands as I sing her favorite song, “Row, Row, Row your Boat.”

My weeks are packed with therapies, medical appointments, medication management and many miles traveled. They are also overflowing with magic, and the privilege of having a front row seat to all the progress that she’s making.

I am on standby every day in case she’s sick or doesn’t get adequate sleep. On school days, I stick close to home in case I need to get to her school quickly in the event of a medical emergency. It gives me peace of mind that I never have to stress over missing excessive time from work. No boss would tolerate the absences I’d quickly rack up.

My clothes and shoes are worn, less than brand new. Ever since I stopped working, I always feel a little twinge of guilt when I spend money on myself. My husband is completely supportive, hard-working, and always points out that my needs matter too. He sacrifices and gives his all to his family. We’re a team and we remind each other that neither of us can pour from an empty cup.

I’m perpetually tired and usually rely on ridiculous amounts of coffee.

But with cup in hand, I’m lucky to have the ability to see my 19-year-old son gaining independence. I’ve had the gift of proudly sitting ringside as he finished high school virtually, now successfully taking online college courses.

ALL parents, no matter their career or occupational status, have an extremely tough job. As I reflect on what my work entails, I am so very thankful. The long days and sleepless nights are worth it all. Despite the many struggles we’ve faced, the time I’m afforded to be with my children is priceless. This life may not be understood by those outside of it, but it really IS nice.

Kindness

“Being kind to yourself”. This phrase has become so ubiquitous that sadly, I think it’s lost some of its meaning. It’s been bandied around for years now, emblazoned across various merchandise in shops and splashed across social media on cute memes, usually with a cat with a paw around another. While I’ll never say no to a cat meme, I find myself internally sighing ‘yes, ok’ and scrolling past. Since I have become a parent carer, this phrase seems to be thrown my way even more, by everyone from well-meaning professionals to support groups and charities.

It was talked about in a meditation at the end of my yoga class the other week, and for some reason I really thought hard about it.  The reason I’d been shrugging it off was not just due to the fact that it’s everywhere, but because I thought I was already being kind to myself. I prioritise self-care (yoga, counselling, walks etc. etc.), and I don’t feel guilty for treating myself when I need it. But when I looked deeper, I realised it’s more about my internal monologue, what I say to myself.

Here, I don’t think I am as kind as I could be.

One example that comes to mind is playing with my daughter, who is 9 but is cognitively around 18 months old. She likes to ‘post’ things (bits of paper into drawers), do very simple peg puzzles, have me read the same picture book repeatedly and watch the same sing and sign video from the late 1990’s, complete with presenters wearing Global Hypercolour T Shirts, on a loop. I get bored. I have never enjoyed this kind of playing, even when both of my girls were toddlers and I had only been doing it for a few months. Nine years on, when I am dragged off of the sofa to play with the same puzzle yet again, I feel frustrated and fed up. And then I feel guilty.

Guilt is one of the emotions I struggle with the most. In this case it comes from my internal monologue – here’s a flavour of how it goes…

“I should want to play with my gorgeous girl.”

“I need to do this to be a good mum.”

“I should be really grateful she is not having seizures in hospital and is able to play.”

“I should be enjoying and savouring these precious moments.”

“I should be doing this to help her development.”

And I realise. That is not being kind to myself.

Being kind to myself goes something a little more like this:

“It’s completely understandable that you’d be bored having to do the same activity repeatedly. Your mind wondering is perfectly fine, and having a nice podcast on in the background is fine too. It’s ok to do this only for a little while. It’s also ok to say no and not do it at all. School is where she gets all of this sort of play, and you can bond and spend time together in other ways that suit you both.” Interestingly, I wrote this as if I was saying it to a friend. A counsellor once (actually more than once) said to me. Would you talk to a friend how you’d talk to yourself? It’s a well-known but very helpful question to check in on just how kind you are being to yourself. A yoga or a massage can only go so far if we don’t talk to ourselves kindly. I am working on remembering that