Caring for carers

It’s Carers Week in the UK in June. When most people think about being a carer, I imagine they envisage looking after an elderly relative, maybe a spouse or elderly parent, I certainly would have before having a disabled child. As a parent of a disabled child it took a while for me to realise I was a ‘carer’ and that my other child was a ‘young carer’.

This family carer role is so much more complex than the typical parenting role. It includes a hefty serving of admin. Not admin of the car insurance variety, this turbo-charged admin can be very painful, such as listing all the ways in which your child and you struggle, to strangers who will then discuss your situation.

It can be pressurised, such as ensuing your child’s care team get paid on time, their expenses are done and you have paid their tax to HMRC. That’s without even getting started on the day to day care, whatever that looks like for each family with a disabled child / children. Special diets, seizures, medical equipment, behavioural support, emotional regulation, medications, therapies, surgery recovery, continence care.

There is relatively little respite available, in my experience.

Even if there was more, I am not sure it would touch the sides for any families looking after a disabled child. In fact, sometimes I don’t want my child taken off to respite, I’d rather have her here with us but not have to worry about the cooking or cleaning.

Can you imagine how amazing it would be if cleaning services were provided to every family with a child with a disability and, let’s say twice a week a healthy home cooked meal turned up. While I’m dreaming, maybe every family with a disabled child would be given a virtual PA to handle all of the day to day admin, order meds and book appointments. Oh, and the cleaner would also do the laundry and clean the windows. This sounds like, and is, a fantasy. However it does get me thinking about how families with disabled children could be better supported. Maybe it is about more than respite. 

For young carers, the offer seems to be some trips out now and then.

While I am grateful this is on offer and I am sure many benefit, my 12 year old daughter, quite understandably, will not attend as she does not know anyone. I get it. It’s like me voluntarily going to a networking event. No thanks. How could this offer be better? Maybe counselling for young people, or a small budget for them to spend on a wellbeing activity of their choice, with their own friends. Again, there’s room for thinking outside of the box here (and outside of the budget I am sure, but we have to have goals).

I’d love to hear other ideas of how families could be better cared for. Right now, I find we are all too often ‘lumped in’ with all other carers, when each type of caring role is unique. Being a parent carer is a role that anyone who has not done it can’t begin to imagine.  

Pivot!

When it comes to following typical family routines, we don’t conform. When our world began to slowly and almost imperceptibly change (we had a slow and progressive journey into the world of childhood disability), I had tried to hold on to as much typical family life as possible. If we were up dealing with a seizure in the night, I’d just push on through the next day as if it had not happened, thinking we needed to cling on to ‘normality’.

Looking back now I wonder if that’s because I thought things may get better and this whole disability thing may just go away. Maybe our daughter would, like so many people tried to reassure me, ‘grow out of’ her seizures, maybe when she did, she’d catch up enough to attend mainstream school.

None of that happened and now she is almost 10 with seizures occurring most nights.

Our brilliant girl also has a severe learning disability meaning her cognition is similar to that of an 18 month old. If someone had told me all of this at the beginning, I’d have felt devastated. I’d have never known that I’d be perfectly happy as we are, yes with some major challenges, and days when I want to (and often do) scream and cry.

I think the happiness bit has been enabled by us all realising that we needed to flex our life to fit. To forget what everyone else is doing and do what works for us. We say no to a lot of things, we have learnt what our boundaries are.

When we go on holiday as family, it is not a rest or a break. It is caring in a different context. It’s still special and we have great memories, but we don’t get to rest. So, rather than plunging straight back into life afterwards, we try to book respite days when we arrive home so we can get the rest that typical families would get on holiday.

We take regular rest at non-typical times. I can often be found lying in a garden chair with a book at 2pm on a Thursday afternoon. It’s a non-working day for me (office job) and I know the dusting can wait.

If I ever feel a shred of guilt for this (which of course I do) I remind myself that rest is essential.

It’s Saturday today. My daughter was due to have a day at respite, our chance to chill. My plan was to hope for a good night’s sleep, a chilled day with our older child and lunch out (impossible with our disabled child). As it happened, she had a seizure at 10.30pm, was up from 1-2am and then up for the day at 5am. But we could sleep today. Nope. She went to respite, had two seizures and was home a few hours later. My husband is now looking after her while I have escaped to write. We still got the burgers and chips we planned (thank you, Deliveroo).

We are so well versed in this pivoting and I now find it less stressful than I did. We accept the change as there is little point expending energy getting upset about it. I have mentally logged however that at the next opportunity, I need to rest to make up for this. If that’s 11am on Monday morning then so be it.  I’ve got a good book waiting.

Control

As someone with anxiety, I have always been best friends with Certainty and Control. In uncertain situations I start to feel edgy. Pair that with situations totally out of my control and I’m scrabbling around trying to control anything I can. Often these days, that manifests in a very tidy house. While I am exhausted much of the time, my house is always very tidy. That is not because I selflessly try to keep it that way because it’s nice for me and everyone around me; rather it’s one of the only things that I feel I can control. A tidy house helps me feel calm and in order, even when things are chaotic around me.

For parent carers, control and certainty are things you often find swiftly slipping out of your grasp shortly after diagnosis (or even before).

For parent carers, control and certainty are things you often find swiftly slipping out of your grasp shortly after diagnosis (or even before). While there are very few certainties in life, there are far more uncertainties in the life of a parent carer.  In the past when I came across uncertainties – e.g. will I pass this exam? I did things. ‘Doing’ helped me exert some control over the situation (sometimes). If I revised I increased the likelihood of me passing. If I wrote to 10 companies for a job, and sought out work experience, I increased my chances of getting an interview. I was a powerhouse of action. In many ways I still am, but my actions now have to be directed in a different way.

I will never have control and certainty over my child’s seizures; or whether tomorrow she will be well enough to attend school, or eat, or function. Whether the holiday we have invested in will be tainted by clusters of seizures. Whether we can even go. Whether we will get the respite and care support we need (a panel of people, most of whom we have never met, will decide that).  

To have other people (and luck) influencing these life-changing things can feel frustrating and frightening. And frankly, wrong.

I hate the thought of my family being discussed by strangers.

We’ve recently gone through a care review. My dreams have done an interesting job of reflecting how this has felt for me. They have included me shouting with no sound coming out; and someone coming in to paint my bedroom bright purple (only the bottom half for some reason – I imagined they’d planned to add a floral border as a tribute to 1994), and me trying to stop them, but failing.

It’s at times like this that advocating for our wider community helps my feelings of powerlessness. That may be through advising on research projects or advocating for better special needs holiday provision. It’s certainly not a selfless act, I get lots from it.  Knowing that the words I speak or write may make a difference takes the focus from my immediate situation and enables me to take action. Sometimes it’s a bigger thing, and sometimes it’s using my experience to answer a worried parent in a Facebook group that hasn’t yet had a reply.

Living with uncertainty is a huge part of parent carer life but, in my experience at least, there are many ways to acknowledge it with a nod and push on anyway.

Be Kind to Yourself, and Others

As a human, I have always believed that being kind to others is a simple action that can make everyone’s day a little bit easier. After all, you don’t know what other people may be dealing with.

As most of my friends (online and in person) experience more than their fair share of difficulty and sadness due to illness and/or disability, it seems that this is a mindset a lot of us have. After all, when you’ve walked through Hell and back you tend to recognise others who have experienced similar – the gallows humour that has us howling laughing while others give us odd looks is sufficient on its own to mark us out as somewhat different!

It’s a known issue that carers, parent-carers especially, have a habit of ignoring their own wellbeing due to being so busy caring for everyone else.

Recently I found myself forced to slow down and take my own health seriously. While our GPs have always been incredible and understood the impact caring for the Dude has had on our health, there has been the occasional blip.

When a few minutes late for a nurse appointment because the Dude had been in a prolonged seizure, being told off like a child for ‘wasting their time’ being late had the effect of making me feel small, inadequate and considering abandoning the appointment altogether.

Not really what was needed when I was already feeling thoroughly worthless and pretty poorly.

If someone had spoken to my son, or best friend, like that I would have been ready to stand my ground and to insist that they received the care they required. It’s ridiculous that we will advocate for our loved ones until our last breath, we will go head to head with consultants, surgeons and funding bodies, yet we don’t consider ourselves worthy of that same commitment.

It’s time that changed folks. Our children and loved ones need us to be well, mentally and physically. They need us to look after our health so we are able to look after them. Although it may not seem like it (I’m looking at you, rain clouds), spring is indeed in full swing and there’s no better time than to indulge in some shameless self-care by spending time surrounded by nature. Spend a bit of time marvelling at the bees, or watching ladybirds scuttling about. I promise it will do you the world of good. And always, be kind to yourself as well as to others.

The Annual Family Holiday

We’ve always tried to do the family summer holiday. We felt it was important to do the things that other families did even though we faced different challenges. With two boys and three and a half years between them and with the eldest having a severe learning disability and complex needs, I’m not going to lie….it wasn’t always easy.

Hotels were a definite No No. James can be very noisy and wake very early. In hotels I would be constantly anxious that we were disturbing other people and that would really stress me. Instead, our holidays were of the self-catering caravan or lodge variety which gave us the extra space we needed.

These would usually be on a site with a swimming pool as this was one activity we could all join in equally. Occasionally a bowling alley would also give us something to partake in together. If there was also some evening entertainment in the form of some music then that would be a bonus too as James loves his music.

Beyond that, it was often the case that my husband and I would do things separately with the boys. It wasn’t really the way I wanted to spend our holidays but it was the best way to meet both their needs and keep them happy. As Harry was typically sporty and active he and his dad would go off to occupy themselves or join in some organised activity as his dad was far better suited to do that than me.

The Annual Family Holiday

My husband would agree that I am far more suited and able to know how to keep James entertained. It was very much a busman’s holiday for me as this was also a large part of my role at home. It also often meant James and I were indoors to do his favourite activities and yet I’d want to be outside doing something too.  

Now my youngest is 24years old he is well and truly over the ‘family holiday’. This is far too stressful for him and he certainly doesn’t want to be woken by 6am every morning. Instead, Darryl, James and myself holiday just the three of us.

As James moved into his own home in Supported Accommodation three years ago, taking him away for a few days holiday also now gives us a nice opportunity to spend some quality time with him.

Last Year Was a Success.

In just a few weeks time we are returning to the same holiday park we went to last year. The park has pleasant areas to walk with James, an indoor and outdoor pool, a little café where James can have cake and we hired a large lodge with a hot tub and private garden. A bonus too is that it’s only a 45minute drive from James’ home and as he doesn’t really enjoy the car this is a very positive thing.

So, this year as we did last year, I will pack a big box of James’ puzzles, books and iPad. Along with his favourite foods and not forgetting his swimming shorts we will set off for the short journey for James’ summer holiday. And this really is all he will need to keep him happy and if we are really very lucky James may even sleep in beyond 6am……here’s hoping.    

Why’d you have to go and make things so complicated?

Avril Lavigne had a point. She may not have been talking about raising a child with a disability, but it’s this lyric I hear when I hit upon another slew of jargon and wordy nonsense that stands in the way of getting on with our lives. Having a disabled child is more complicated than I ever could have imagined.

Aside from all of the obvious complicated stuff such as EHCPs, DLA, social care support, school transport, education, therapies of all kinds, medical appointments, surgery, hospital admissions, medications, training, payroll, HMRC codes and so on, there are hidden surprises too.

We recently went to our solicitor to review our wills and make sure things were in place for our family. What I thought would be a straightforward boring bit of admin turned out to be far more complex (and expensive) than I could have imagined.

She stopped us shortly after we started talking, and asked us if we knew about trusts for disabled people and that if we left money to our daughter in our will without a trust, it could affect her benefits and future provision.

We had no idea about this but thankfully she helped us set one up (at a cost of £1200+ – a bit more than your average will, but hey, nothing like a disability price tag).

We’ve also had to let close family know to do the same if they had intended to leave her anything.

It’s an awkward conversation to have, and, because disability is not talked about enough, a topic that most of us would have not even considered. No one tells you this proactively, you have to go and seek this information out.

One day I’d love to see a guidebook given to every family with a disabled child upon diagnosis that includes all of this stuff.  At the very least, those giving diagnoses should be referring families to Contact, the national charity for disabled children that has an impressive library of advice and resources.  

I recently came across the most accurate description I have ever read of parenting a disabled child. A mother described her relationship to her daughter as being ‘like a dragon curled around her’. This immediately resonated for me.

I know that however complicated things get, while I am here, I will be that dragon. It still surprises me how often I have to lift my head and breathe fire. Challenges come at us from all angles, provision being threatened, seizures, accessibility issues, stares from members of the public. Yet somehow the fire doesn’t run out.

While the fire will never burn out when it comes to protecting my children, I am frequently left exhausted from living in a world that is not set up for disabled people. When I do find surplus energy, I am determined to channel that into projects to make change. Goodness knows we need it.

And then you were 13

I thought writing a blog post to celebrate my boy reaching his teenage years would be a simple task. I’m on the fifth (sixth?) attempt at this point and struggle to get past the first few lines. I don’t want to write the same thing as I’ve done over years past, it gets boring for a start, but this birthday has been a particularly difficult one for me as his Mum to navigate emotionally… and I really want to somehow put that down on paper.

Thirteen is a milestone, lets be honest. As far as he’s concerned he is no longer a little boy, he’s growing up (far too quickly to my mind) into a young man. He’s as tall as me now, he wants to try new things and be allowed greater independence. On occasion he is still very much my little boy, wanting nothing more than a cuddle to be close to Mum, but as he physically changes into an adult he is also mentally changing too.

I’ve really struggled in the run up to this birthday.

I don’t know whether it’s the knowledge that he wasn’t really expected by the medical profession to reach this age, or that so many of his friends didn’t get the chance to that has been playing on my mind. I don’t know how to talk to him about his emotions; he’s going to start having some big feelings and like all teens he will need to learn how to deal with those, however being preverbal adds additional complexity.

I always find the week leading up to his birthday to be a bit tricky. His arrival didn’t quite go as planned and although wasn’t as traumatic as many, our stay on the post-natal ward left me with a diagnosis of PTSD. I still struggle against the need to wrap him in cotton wool and protect him from the world; even though he reminds me (daily) that he is more than capable of doing just fine thank you very much!

If I’m honest, I miss him being a baby. I miss the ease with which I could lift and carry him. I am beyond proud of the handsome, gentle young man he is growing up to be. His intelligence is undeniable, as is his stubbornness (can’t guess where he inherited THAT trait from. Ahem). And it is the greatest privilege imaginable to get to see my boy grow up, something we feared we might never do.

So, welcome to your teenage years my wonderful, tenacious boy. As your parents prepare for the attitude to really kick in, I pray we remember at all times that it is that attitude and tenacity that will take you wherever you wish to go x

Parent Carer Trauma

Jo Griffin is a parent carer and psychologist with an interest in the emotional wellbeing of parent carers. A new discussion document on this topic is now available here: https://rb.gy/nf5tsn

Content warning: this article refers to trauma and examples based on parent carers’ lived experiences.  If you do not feel ready to read it now please save and bookmark for a later time when you are able to and have relevant support around you.

It is well recognised that parents of disabled children can be at greater risk of poorer mental health than other parents. What is not always recognised is that they may also be experiencing/have experienced trauma.

Trauma is when we experience very stressful, frightening or distressing events that are difficult to cope with or out of our control (Mind). It can be a single incident or ongoing events that happen over a longer period of time.

Symptoms of trauma can include:

  • Stress, anxiety and feeling ‘on edge’ (‘hyperarousal’)
  • Difficulty sleeping
  • Reliving aspects of the traumatic experience and feeling like it is happening in the present moment (‘flashbacks’)
  • Feeling numb, spaced out or detached from things going on around you (dissociation)

Traumatised individuals may also turn to unhelpful coping strategies to help them deal with difficult feelings, such as withdrawing from others, drinking too much alcohol, overeating or self-harming.

If left unprocessed, trauma can come out in different ways. Sometimes seemingly small things can trigger a traumatised response, surprising both the traumatised person and those around them.

Parent Carers

Research suggests many parent carers experience traumatic events, both major events (‘Big T’ trauma) and ‘small t’ cumulative and ongoing traumas (Griffin, 2021; Emerson, 2019). What causes this may be different for different people. 

For example:

  • A parent whose child displays behaviours that challenge and the parent is regularly hit at home. They feel ashamed and don’t share this with anyone. Help is not easy to access.  The parents manage this by very rarely going out, they lose contact with friends and support networks.
  • A parent who experienced birth trauma having to regularly attend the same hospital, or similar, where the initial trauma happened. A father who witnessed his partner and child almost dying due to birth complications.  Factors such as stressful waits for appointments, witnessing invasive medical procedures or having to repeat difficult histories can retrigger the initial trauma.  Even seemingly small incidents (a report being lost) take on heightened sense of ‘risk’. For some parents birth trauma is compounded by how information about their child’s diagnosis or prognosis has been delivered.
  • A parent becomes battle weary due to the constant “fight” for services or respite and negotiating across complex appeal systems and multiple agencies. They feel ostracised, misunderstood and sometimes not believed. Sometimes the hard-fought-for service requires great effort to maintain on the part of the already exhausted parent.

Cumulative trauma can be debilitating and is not always recognised in parent carers. This means that they do not always receive the most appropriate referral for support.

A Parent Carer Trauma Working Group, comprised of parent carers and professionals has been meeting for the last couple of years and has now released a discussion document here: https://rb.gy/nf5tsn

It can also be access via www.affinityhub.uk which signposts to emotional support.

We hope that this will encourage parent carers to seek the help they need and raise awareness amongst professionals to identify, and support, when a parent has experienced trauma.

Why we need the Special Olympics

Hearing the Special Olympics athlete oath, resonating over a crowd from a loudspeaker, is an incredibly moving experience. I feel a lump form in my throat every time I listen to an athlete recite the powerful words at an event.

“Let me win. But if I cannot win, let me brave in the attempt.”

It is truly a thing of beauty.

This year was the 2nd year that my daughter and I attended our local Special Olympic games with her school. As I stood there on a bright sunny morning, in awe of the participants, families, and caregivers around me, I realized why we NEED these community events.

Excitement and inspiration filled the air. In her wheelchair and with her communication device, my girl was not an anomaly there. She was surrounded by kindred spirits, and she was enveloped by love. New friends excitedly introduced themselves to us, and we ran into precious old friends too. Volunteers checked on us, making us feel welcomed.

We belonged there. Everyone belonged there.

My daughter had a blast, laughing with the breeze in her hair, as I pushed her in a short distance race. She was given her very own blue ribbon, and it really was a huge victory for her.

Typically, the sun and wind send her into anxious sensory overload. Not on this day. It was a monumental win as she was calm and free, having the time of her life.

As we sat on the sidelines, clapping and cheering in unison with others for EVERY athlete, I felt an overwhelming sense of gratitude. As I soaked in the enthusiasm and the determination that was all around us, I realized that this is what our world should look like. It was perfection.

This groundbreaking vision of inclusion and opportunity was brought to life in 1968 by the late Eunice Kennedy Shriver. Having a sister with intellectual disabilities and witnessing the injustices in society’s treatment of disabled individuals in the 1960’s, she started a movement to completely flip the script.

She helped the world see their worth.

She aided society in recognizing their talents. The Special Olympics was created to give those, like my daughter, a chance to play, compete and to be included. It commenced to place emphasis on all unique ABILITIES.

We desperately need more events like the Special Olympics, where no one is forced to sit on the sidelines and observe; a place where everyone can take part. Everyone has a chance. It’s paramount that individuals with disabilities are given every opportunity to SHINE and to be proud of themselves.

If you’ve never attended a Special Olympics event, I encourage you to go. You’ll witness strength and perseverance like you’ve never imagined. Your heart will be forever changed.