I don’t want the care. I need it.

Last night at 9.38pm I was in bed and could hear my husband whispering downstairs to another woman. I had never met her before and she was to spend the night in our house.

I suddenly stopped to think about what an alien scenario this is to most people. To us, it was a bit unusual but nothing too out of the ordinary. She was a relief night carer for our daughter.

Our care package includes three nights of care per week, meaning we get three solid nights of sleep, safe in the knowledge that someone is handling our daughter’s seizures. When this kicked in, at the recommendation of our assessor (I was sceptical as I never thought I’d be able to trust someone else to handle her seizures), our lives changed, our health dramatically improved both mentally and physically, and the pressure eased in a way I could not have imagined.

We are going through a care review at the moment and the feelings I have around this are tough to deal with. I swing from fear (‘what if our care gets taken away?’); to guilt (‘I hate having to ask for this expensive help’ / ‘what if another family needs help and isn’t getting it?’) to frustration (‘I don’t want to have to have carers in my house!’).

That last point I think sums up the ambivalence I feel at needing support.

I was walking home from work the other night and felt like I did not want to go home. I wanted to extend the walk and take the long route. Past the river and among the trees, in the spring sunshine.

It wasn’t just because it was a nicer route, it was because I was tired, and in my home it’s chaotic and noisy and there are lots of people there. By taking the longer route I could enjoy a few extra minutes of peace.

I really like my daughter’s carers, they are some of the nicest people I have ever met. But they are not my family. Sometimes I’d love to be able to go home and shut the door and it’s just us.

Small talk is tiring and I’d been doing it all day in the office. The problem is that if it was just us and we had no carers or family to help us, I’d likely be unable to work, function and quite quickly my husband and I would struggle to cope with the 24/7 care our daughter needs. All of our family’s mental and physical health would suffer. So here we are, between that proverbial rock and a very, very hard place.

I feel gratitude for the care but ultimately I don’t want it. I just need it. When we stop to think about this, in the context of parent carers having to fight for services, it’s quite sobering. Noone is fighting for anything they simply want. It’s a fundamental need. And no one should have to fight for that. 

Age Appropriate

Parents of typically developing teens are more in tune to the current “must-haves” that girls wish for. I’m clueless, but I would imagine that trendy clothes and bags, friendship bracelets and tech gadgets make suitable gifts.

When my daughter turned 13 last year, I carefully sought out ideal birthday gifts for her. I thought about all the things that bring joy to her life. Having complex physical and intellectual disabilities, most of her favorite things don’t align with those of the teenage majority (except for her unwavering love of Taylor Swift!) As that realization has begun to sting less and less over time, she has taught me a priceless lesson:

Our cherished treasures don’t have to be age appropriate. They just need to be appropriate for us, as unique individuals.

If a toy, YouTube video or book brings her happiness, THAT’S ALL THAT MATTERS

Blippi videos, preschool songs, toy pianos and board booksfill her days with wonder. Her mornings begin with “Row, Row, Row Your Boat” and playing peek-a-boo when she wakes up. These are her favorites, and they are an integral part of her one-of-a-kind personality.

I was sad when my older son outgrew his young childhood interests. It seemed that precious stuffed animals and beloved story time snuggles quickly vanished. Overnight. Suddenly, he was too cool for The Wiggles and Winnie the Pooh. This time around, I find gratitude in this slowed-down pace of entering the teenage years. I don’t take it for granted. I’ve learned to view “growing up” in a whole new light and I appreciate all the extra time I’ve been gifted to spend in this whimsical world.

Babyhood lasts longer here.

Toddlerhood continues into the teens here.

Long, sleepless nights carry on forever here.

But you know what? I wouldn’t trade any of it.

I’ve gained much wisdom from loving my daughter, and I’ve learned that we don’t have to ever fit into the norm.

If you see a young adult clutching his teddy bear in public or,

If you witness an adolescent singing “The Wheels on the Bus,”

Don’t hastily assume that they’re “too old for that.”

It’s OK if the things that delight our children with additional needs aren’t deemed as “age appropriate.” It’s perfectly fine if their prized possessions are intended for children YEARS younger than them.

I’ll gladly continue to listen to Taylor Swift, while reading The Very Hungry Caterpillar with my teen. They are both incredibly appropriate and completely perfect for her.

How to be friends with a parent or carer of a disabled child

A close friend told me the other day that I should tell anyone that wanted to be friends with me in the future to watch the incredible BBC sitcom There She Goes before they could be friends with me (still available on iPlayer, highly recommend). I loved this. That drama is like watching our life on screen (minus the seizures).

Do Listen

While I don’t expect my friends to be able to recite all of my child’s medications ,remember the names of her doctors and gain a deep understanding of the direct payments system for respite, I love it when they let me offload. If they remember little details when I bring it up again, it really helps me feel supported and heard.

Don’t downplay your own stuff.

Don’t downplay your own stuff. At some point I think all of my friends have found themselves finishing off a download or a moan about their life stuff with the words ‘but it’s nothing compared to what you’re going through, of course’. There’s no need to say this. In fact, I now actively ask people not to. I want to hear the stuff that’s going wrong in their life, it helps me remember that everyone has difficult things to deal with.

Don’t turn up at my house unannounced.

This has only happened on a few occasions but each time it’s unnerved me.We have so much uncertainty in our lives that a sudden doorbell ring with the expectation of a quick cup of tea is generally enough to send me into a tailspin. When the children are at school I cherish the quiet and am either working, doing the admin that comes with having a disabled child or trying to get some desperately needed rest.

Do give me loads of leeway.

My friends are brilliant at understanding when I don’t get back to them. There’s no pressure.Same applies when I have to bail on stuff, or say a flat out no.I can’t do late nights (that means past 9pm) and no longer drink alcohol or caffeine. All my friends understand this and know what I do and don’t do. I am in bed by 9 every night.    

Don’t feel pressure to ‘help’

Naturally, when I started on this journey, my friends wanted to help, somehow. In the early days, or at times when we are in hospital, things like cooked meals and practical help were what we needed. As time has gone on however, my close friends have been able to tune in more to the nuances of the situation and by far the most helpful thing for me now is having them listen, understand and sometimes help with practical advice (such as reading over an email) and helpful reminders about how I have coped in the past, so I know I can cope again. 

If I have one message based on my experience it would be this: Just listen, and be there. That’s it. It’s hard to see friends struggle, but part of the skill in being a friend is being able to sit with the other person in the hard times and bear it along with them, especially when you can’t make it better.

The Hardest Decision to Make

Life has changed considerably for my family in the last three years. At the end of April, it will be three years since my then 24yr old son James moved into supported accommodation.

It would be fair to say that since James’ birth, life has been an emotional rollercoaster. With the sleepless nights, open heart surgery, stomach surgery, other minor operations, behavioural issues and seizures to name just a few of the life events we’ve had to negotiate.

However, from the very beginning of the process of looking at a long-term home for James through to moving in day (and some-time after) I shed more tears than I had done at any period of my life.

James moving out was the most difficult decision my husband and I ever made.

When James was very young and the future seemed very far away, we discussed that when James reached his mid-twenties, we should be looking for a permanent home for him. In the end it actually came about by chance because a supported accommodation house was being renovated near to our house.

To cut a long story short, the accommodation on offer there wasn’t suitable for James but the lady who manages the company who run the home invited us to look at another of their properties a little further away. Actually 22 minutes door to door from our house to his.

A couple of months later after several visits to the home and many meetings with all the agencies involved in James’ care, we had to give a definitive yes or no.

The flat we were looking at in a communal home was in great demand. Due to covid, meetings were being held online. One August afternoon in one of those meetings I stated that yes, we wanted to proceed.  I was home alone and at the end of the meeting I turned off my laptop and I cried…and I cried some more….and I didn’t stop for months.

It’s a complex process to get all the funding in place not to mention the whole transition process itself for James and preparing his flat too. It was complicated by covid and the actual moving day was pushed back twice due to lockdowns. I really didn’t mind as it meant I got to keep James with us a little longer.

I will never forget how I felt the day I walked away and left James without us in his new home.

Of course, there have been some hiccups since James moved in. Nothing is ever going to be perfect but between myself and James’ staff we work them out. Life has taken on a new routine. We see James at least twice every week, he comes for tea on Tuesdays and we see him at the weekend.

I look forward to seeing James and enjoying quality time with him as I am no longer permanently exhausted. When he is at our house, I spend virtually all my time playing with him and he comes for regular sleepovers too.

What I do know is that I had total control over where James moved to. When I slip out of his life which one day I will, he will be secure in his home.

He will not be uprooted and moved miles away from everything he has ever known. I have seen this happen and this is what motivated me, this is what got me through those tearful difficult days. I did not want that for my son. When I am no longer here, his life will continue…….just without me in it.

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.