Two boys. Two different personalities. Two different sets of needs. Two different ways of thinking.

They face very different challenges. But they are brothers and for the most part they are best buddies. My boys have spent so much time together over the last while as we’ve been shielding and our country has been in a state of lockdown.

I was apprehensive about this at the beginning; it can be a difficult balancing act to juggle both their needs. However, I was determined to make the most of our time at home and to make precious memories for them. I have to say I have loved seeing their relationship grow during this time.

Together they have built story dens, had discos in the living room, watched movies, played on the PlayStation. They have baked, raced on their wheels, chilled in the garden. They have made up games, helped each other with schoolwork, had fancy dress days. They have laughed a lot and had lots of silly nonsense. They have accepted each others needs and embraced each other’s quirks.

They seem to have gained more understanding of each other and have enjoyed this time together.

Of course, like all brothers, they’ve had their moments. They’ve argued over who gets to choose the game or who said the answer first. They’ve fought over what movie to watch and they’ve screamed at each other to be quiet! They certainly know how to push each other’s buttons and they’ve definitely, at times, needed time out from each other to just chill on their own.

But when one is sick, the other is worried. When one has been sad, the other tries to cheer them up. When one is having a melt down, the other tries to calm them down. When one is upset about something, the other tries to get them smiling again. When one needs their daily physio, the other wants to help. When one is having a hard time understanding change of routine, the other tries to reassure.

By bedtime each night they are always best buddies again and they say prayers for each other before going to sleep. My hope is that this time spent together has bonded them and whatever life throws at them they have this special relationship because “he ain’t heavy, he’s my brother”.

How many times have you thought to yourself “I can’t do this…”

I bet it’s more than once. We all put on a brave face on social media and post pictures of us cuddled up with our children smiling and laughing and having a great time when the reality is actually, that great time lasted no more than ten minutes.

Especially now while we are all spending more time than ever together – and don’t get me wrong here, it’s great spending all this time together and I honestly love it most of the time. Memories will be made and we are all learning new things each day but my goodness it’s exhausting isn’t it!

We still all like to pretend that it isn’t by shoving all the toys and junk out of the way for the perfect photo, we take a picture of the amazing cake that we all baked together (when really we freaked out a little knowing what a huge clean up job it would be after and also the hundred little pieces of egg shell that got in the mix because your child just had to do it themselves).

You’ve maybe even shared things on social media saying something along the lines of “don’t struggle, talk to someone if you’re struggling, YOU matter”

You’re willing to help others but never take a minute to think about yourself, usually because you don’t have time!

But the truth is, something’s got to give and if you keep burning your candle at both ends then it just won’t last. However, share that light and you’ll see just how much things can be better.

It’s hard asking for help or admitting that you’re struggling but it’s even harder trying to do it all alone.

You might think that there’s no one that can help you and while that might be true physically right now, there will be someone you can call or even just message to talk to. Have a break, don’t feel guilty for letting your children watch tv or having the iPads so you can just breathe and be alone for a minute to your thoughts.

And don’t do it all! No one is going to judge you if you don’t tidy away the toys one night and have some time to take care of yourself.

Dear carer,

I thought about you today when I sipped my morning cuppa. I wondered when you would get your first cuppa? Would it be after you had washed, dressed and fed someone else first? Would you perhaps even have had to medicate, reassure and calm an anxious heart and body before you got to sit down and eat and drink yourself?

I thought of you when the postman brought me mail. Have you had a bill today that made you worry, another appointment for the person you care for, a new report about their condition? Have you had to pick up someone else’s mail too because they can’t read, don’t understand or are too frail to bend down to reach it? Are you carrying the burden of someone else’s affairs as well as your own just to keep that person independent for a little bit longer?

As I watched the news, I thought of you again.

I know you exist, but the media never seems to talk about you. It’s like you are invisible to them, a sort of army of ants working tirelessly for little more than love but meeting needs of such high significance that specialists paid thousands struggle to grasp.

I made myself a sandwich for lunch and my thoughts turned to you again. Do you get a break or are you working all day and all night unable to ever leave the call of duty? Are you spending yet another meal time cooking, preparing and feeding someone else who may or may not ever be able to thank you? Only to then have to clear them up, clear away dirty plates and cutlery and provide very personal care to another.

When I heard from a friend I thought of you again.

When did you last get a night off? When do you see your friends, socialise and build up your personal support groups? Was it yet another day of isolation, being hidden from the world, caring alone? How much do your friends even know you do? Do you have anyone you can offload to, laugh with, confide in?

When I bought myself something online, I wondered about you once more. When do you get time for yourself? How do you juggle self-care when the needs of another are on your shoulders day in and day out?

I read a comment from a friend on social media who is a student but working too and how hard it was for her. I thought about those of you doing this for more than one person, parents of more than one disabled child, ‘sandwich carers’ caring for more than one generation, sons and daughters caring for parents who both need support. I thought about how hard and demanding that must be, how stressful and how exhausting too.

As I went to bed knowing I could switch off, relax and sleep as much as my body and mind needed, I thought of you again. How difficult and tiring it must be to care through the night as well as the day. How perhaps your mind, understandably, can’t switch off and the worries you carry for the future.

Maybe I thought about you because it’s Carers Week and finally it’s your week to be noticed and accounted for. Maybe I thought of you because I understand, I care and I see you.

I thought of you mostly because what you do matters greatly.

You are not insignificant or unimportant. Without people like you sacrificing daily for others there would be so many vulnerable needing care that society couldn’t cope. The taxpayer would be so burdened by the cost that you save by being you and doing what you do. Without you there would be thousands more in hospital, homes and hospices and they wouldn’t cope.

Dear carer, I thought of you today and I hope others did too. I know thoughts won’t give that physical support you need, or the financial help or even ease your burden in any way. But I hope it gives you some comfort to know that you are seen and cared for and valued greatly.

The world needs you. You are vital and important.

You are visible to me.

Thank you,

Don’t stop caring please. You are appreciated.

 

Pressure is something you find in all walks of life. It is something I put on myself all the time.

Pressure to be the best mummy, the best wife, the best daughter and the best friend.

Being a special needs mummy comes with extra amounts of pressure. Ethan has a huge amount of therapies that he needs to help him. Whilst he’s constantly with me at the moment, all of this falls to me. I have put so much pressure on myself to give him the same input he would get at school. It’s not the right attitude and I’ve had to adjust my way of thinking. Here are my tips to make sure you’re easing the pressure on yourself to be at your best all the time.

Perfection isn’t possible. You can strive to be perfect, but you won’t ever be perfect at everything.

Realistic, be realistic in the goals you set for yourself and those around you. I used to get disheartened when Ethan didn’t reach the goals that were set for him. It took me a while to persuade those working with him to provide goals that would encourage him to work towards small achievements. I know him better than anyone, so I know what to set as realistic goals to ensure he really gets the best out of his development.

Be realistic in how much you can achieve in one day. Don’t set yourself up to fail by giving yourself too much to handle in one day.

Expectations need to be lowered. By lowering your expectations your life becomes more manageable. You will be disappointed less and you will be able to celebrate all these milestones your child does reach. This doesn’t mean you need to have low to no expectations but don’t set them too high.

Stop and listen to what your body is telling you. I suffer badly with migraines. Putting pressure and exerting myself all the time means I suffer worse with headaches. It’s so important to put yourself first as well. Also, listen to your child and see when they need time out as well and time to adjust to new situations. Behaviour can change during different situations and it’s important to take note of this too.

Self-care is important. This is like the relaxation but can also be done in different ways. Try treating yourself to a nice bath, reading a book instead of watching television. Try some meditation to ease stress or getting exercise and fresh air.

United together is so important. Working with people rather than against each other will take the pressure off yourself. Allow people to help you and asking for help will greatly remove pressure. This is something I’m not great at and I definitely need to practice more. We have a team around us and working with them really helps when there’s something in particular that we need.

Relaxation is incredibly important. Your body and mind need to recoup ready for the next challenge. Please ensure you are giving yourself enough rest time as well as allowing your child that time to relax too.

Encourage yourself and your child at all points of your journey. Encouraging yourself will allow you to feel happier and more relaxed with everything. Encouraging others really helps self-esteem and will help you to work well with others too.

I hope this helps a little to ease the pressure you put on yourselves. Keep smiling and remember you’re doing a great job.

 

The theme for this year’s Carer’s week, from 8-14th Jun 2020, is ‘Making Caring Visible’.

This feels particularly relevant as during lockdown all parent carers have been quietly holding their families together in the privacy of their home with little, or no, outside support.

We are still largely hidden.

Our role is barely recognised by the limited carers allowance which is the smallest benefit of its kind (for those who can get it). It can even take time for us, as parents, to recognise that we are carers.  Yet is there anything more precious, and under-valued, than caring for another human being?

In my research into Emotional Wellbeing in Parents of Disabled children I found another largely hidden aspect of caring: that many parents live their life feeling constantly ‘on edge’.

This was illustrated by the parents who despite their child being away at respite couldn’t rest as they felt guilty, nervous and unable to enjoy the time for themselves. It takes time to adapt to this support.

It came out in the parents who even when their child is at school cannot engage in other activities in case, they get a call from school telling them to come and pick up their child.  It takes trust to relax when others care for our loved ones.

It was present in the parents who felt unheard or judged facing inadequate services or stigma and discrimination (ableism, racism, sexism and more).  Challenging bias and prejudice involves systemic as well as individual change.

Sleepless nights for parents worrying whether the service their child desperately needed would be provided.  Even hard-won support felt precarious and the battle continues in perpetuity. It requires a community to support a child with additional needs.

Add Covid-19 into the mix and many of us realise, yet again, that caring is up to us and us alone.

Therefore, part of what we need to make visible is that we are people with our own needs. Acknowledging that we are ‘on edge’ and making our anxiety visible to our self and others is an important first step.  No one can run on hypervigilance for a prolonged period of time without there being a cost to our own mental, and physical, health.

We want reassurance from society that others are there for us and will catch us when we, or loved ones, fall.  Indeed, this would be the biggest gift to carers. You can write to your MP by clicking on the link at the bottom asking them to show their support for Carers Week.

While we aren’t always valued by others, we can value ourselves.

Along with longer term goals of social change and recognition, what can help you in the immediate environment with these feelings of being on edge?

Time off

Even a small amount of time to ourselves is helpful in allowing us to re-calibrate and re-charge. I know it’s hard but it’s vital.  I realised early on in lockdown that I hadn’t had more than 10 minutes on my own during the day.  I noticed my irritability increase. I now make sure I have at least a 30-minute break in the morning and afternoon where I can put the television on for my children. Sometimes I just sit down with a cup of tea and take deep breaths and feel my shoulders relaxing.

Positive Others

Other people who you can talk to, share experiences or offload can provide a welcome distraction. You will know who these people are in your life – make the time to contact them for a chat or a socially distanced meet up.

Time away from online life

The news and social media can all become overwhelming, particularly with the current devastating news from around the world. I wonder whether we’ll all have an element of post-traumatic stress in response to the events of the last few months while we have had to hold it all together for our families. When things get back to normal (new normal?) will we have time to process what’s happened, to catch up with our psychological wellbeing and regain our balance?   Having time away from the constant flow of information provides a chance to digest what we have read and seen in our own time.

Having other things in our life

Caring for others is a noble life purpose but it is not all that defines us. We must have other interests, activities or passions in our life to maintain balance and emotional wellbeing. This means asserting our rights to a life outside caring and saying no to other less important demands on our time.

Tell people what you do and what you need from them, be proud of what you achieve and join together with all carers to make caring visible by adding your voice to the online network.

Add your voice www.carersweek.org

Ask your MP to show their support for Carers Week:  https://carersuk.e-activist.com/page/60558/action/1?ea.tracking.id=CUK-email&utm_source=Carers%20UK&utm_medium=email&utm_campaign=11572354_CW%202020%20Red%20EN%20action&utm_content=EN%20MP%20action&dm_i=74C,6W1AA,L800R3,RO2CE,1

Other wellbeing tips are available on the affinityhub.uk website www.affinityhub.uk/6/Wellbeing.html

Communication is far greater than the spoken word. For many parents in our community just the slightest change in facial expression can signify a choice, an emotion, a like or dislike.

Being classed as non-verbal doesn’t mean that a person cannot make verbalisations or sounds and sometimes the odd word or two. It’s quite a generic term covering a wide variety of possibilities.

When your child cannot tell you directly what it is that they want to express. You get creative. You look for signs, and indicators which can slim down the options. For us, it’s Violets eye gaze. She utilises this amazingly.

Violet at five years old is classed as non-verbal.

Violet can say a few words, not often and very sporadically. Violet does however have a lot to say, she uses her voice beautifully and sounds like she is singing. Violet uses her squeals, chatter and sighs to emphasis choices and emotions.

Over the last couple of years, we have experienced regressions with speech and communication as a whole. These have been absolutely heart-breaking, to reach hard won milestones and for them to be cruelly snatched away. Sadly, for us this is an ongoing battle due to a rare epilepsy syndrome.

However, Violet continues to surprise and amaze us. A great many people assume that when an individual cannot speak, that they do not understand. This is of course absolute rubbish. Speech and cognitive ability are completely separate entities.

Unlocking an effective communication method is the key to everything.

To mutual understanding from which you can continue to build a vocabulary together. It won’t be conventional and sometimes will be hard to explain to others but if it works, it works!

There is a huge desire as parents to recognise what it is, our child is requesting or telling us. It physically hurts to see your child in pain when you have no idea what is wrong because they cannot tell you.

To see the frustration in their eyes as they try over and over again with the limited gestures, they have available in their arsenal, for you not to grasp their meaning.

Intuition plays a massive part in the successes.

Often Violet has been incredibly clever in her approach and attempts to tell us what it is she wants to say. Pointing her gaze to certain objects, images or foods. It is often hit and miss until you have a lightbulb moment and it just clicks.

Whatever means used, communication opens a world of opportunity and independence. We use a range of methods, some work better than others. Everyone is different, each of our needs are unique, there is no approach that suits all.

Progress is often slow, frustrating for everyone involved and can be very emotive. But it is worth it all. To see the smiles, the proud face, the joy of being understood.

A few days ago, I was mindlessly scrolling through old videos and pictures on my phone whilst lay in bed, struggling to sleep after another day of the same routine.

I stumbled across a video of a three-month-old Jaxon. He was lay on his front, pushing himself up and holding his head up with a confidence that I don’t ever remember him having. I continued to scroll. There was another video of him doing much the same. Then another, only this time he was clearly moving his legs in a way that he was trying to gain some momentum to roll himself over.

Until that moment I hadn’t realised quite how much Jaxon has regressed. It’s been a gradual decline and I’ve been so busy with life that I’ve not noticed what is staring me right in the face. Jaxon’s development hasn’t progressed, if anything it has gone backwards.

I spent the next 90 minutes or so in floods of tears. I watched the videos over and over, like some sort of torturous routine that I couldn’t detract myself from. In that moment I was punishing myself and I don’t really know why.

“Where have I gone wrong?”

I was so angry with myself. “I should’ve tried harder. I should’ve done more” these were the thoughts that were racing through my mind that night.

“I’m not good enough” that’s right, I felt that I was not good enough to be Jaxon’s Mum. In all honesty if you were to ask me if I feel good enough now, I’d likely still tell you that no, I’m probably not good enough for him. My confidence is at an all-time low and I spend a lot of my time thinking I’m out of my depth.

I’m only too aware that I won’t be the only special needs parent, or even parent with those thoughts.

The reality is Jaxon has intractable epilepsy. He was diagnosed with infantile spasms a year ago and we never managed to gain control of them. He is now on three medications to try and get his seizures under control. Yes, that’s correct – THREE. Add into the mix he has a severe brain injury from birth that causes him to have extremely chaotic and disorganised brainwaves, there’s probably a lot more epileptic activity going on that I’m not even aware of. He has a movement disorder. He has ongoing feeding issues that we’re only just starting to get on top of. He has metabolic bone disease. He has a visual impairment.

If I’m honest with myself, I’m all too aware that all of these things were totally out of my control, I couldn’t have possibly done any more than I have to try and get these issues resolved. They’re also likely to be the main reasons that Jaxon’s development has regressed.

So why am I questioning if I am enough?

Why am I having these fleeting moments telling myself that I am not enough, not even close? Why am I punishing myself? Why am I spending hours upon hours torturing myself?

I’m not sure. Maybe it’s part of the ongoing process of coming to terms with how life looks now compared to what I imagined almost two years ago. It’s a journey and there’s no real destination in sight, we just navigate our way through a field of unknowns, looking for ways to resolve challenges however we can.

So how did I overcome these feelings? The reality is I haven’t. I’m still battling an unhelpful and damaging daily internal dialogue. I’m still feeling that I should’ve done more when Jaxon was younger. There’s little I can do to get away from these feelings. I thought to myself, if I’m struggling with thoughts like these then it’s possible those closest to me are struggling too. Not with the same feelings of course, but with their own internal dialogue throwing unhelpful thoughts at them. I quickly realised that those in my life are probably quietly waging wars with their own minds, their own insecurities and their own troubles.

I’m a fixer. I always have been. I like to make people smile.

So, I did a spot of online shopping and sent some surprise gifts to those closest to me, particularly those who have helped to carry me through the last very difficult few months. Not only would it hopefully help make them smile, it made me feel good. It distracted me from that unhelpful internal voice that I am desperate to remove yet that I’m struggling to even quieten at this moment in time.

As the thank yous started rolling in over the next few days, little did those who were thanking me realise that I was so much more thankful to them than I could ever express. Thankful for them listening to me. Thankful for their reassurance, their friendship, their kindness, their love. Thankful for them standing by me and just being the people that they are. For a moment I was able to make them smile with a small random act of kindness but that is nothing in comparison for what they have done and continue to do for me.

Epilepsy is something that I have always been fearful of for my daughter. With her brain injury it was always a possibility, but by the age of two I had begun to think that maybe we were out of the woods when it came to epilepsy. That was until January 2nd of this year.

When my daughter was born, she suffered a brain injury known as HIE, an injury resulting from oxygen deprivation to the brain, and was immediately put on a cooling blanket. It puts your body into a hypothermic state for 72 hours to allow it time to rest after experiencing trauma.  As they move the body back to a normal temperature, it can sometimes trigger seizures. My daughter experienced pretty significant seizures coming off of the cooling blanket. She was put on high doses of seizure medication, but eventually was weaned off before leaving the NICU.

Seizures seemed like a thing of the past.

As time passed, the fear of seizures was always something that was in the back of my mind. I know epilepsy is not necessarily something that went hand in hand with HIE, but as I met more families similar to ours, I could not help but notice how many were affected by epilepsy. Still, it was something I would rather keep in the back of my mind.

January 2nd started pretty much like any other day. She and I woke up pretty grouchy, but that isn’t unusual for us. I laid her down on her favorite play mat and turned on cartoons to keep her occupied while I got her breakfast and medicine ready.

When I came back into the room she was giggling at something that amused her on the tv. I can’t remember exactly what it was, but I’m sure a cartoon shark was involved. Her dad had just left for work. I then filled her syringes with her breakfast (she is 100% gtube fed), and when I looked down, I noticed her head was fixed to the side.

I immediately knew something was off.

She then began to have rapid mouth movements, as if she was speaking very quickly, but she is nonverbal. Her eyes remained fixed, and then her limbs began to tremble. I immediately called my husband to come back home, because I knew she was experiencing something I had spent two years mentally preparing for. I was not prepared.

I called for an ambulance and was given instructions from an incredibly kind and calm woman over phone. At the time, all I could think was, “how could you be calm at a time like this”. Perspective is not a strength of mine at times of crisis. It was so difficult seeing her lose the small amount of control of her body that she had. I then was flooded with so many thoughts and emotions. “I’ve got to keep the paramedics from letting my cats out” , “how could you be thinking of your cats when your child is seizing on the floor” , “should I get shoes on or a jacket” , “how could you be worried about yourself at a time like this”.

My mind was all over the place, and I just felt like I was failing her.

Thank god the paramedics arrived quickly and were very reassuring. It was so bizarre seeing such a tiny person being loaded onto this gigantic gurney. I got into the back with her, not before running back for tablet and favorite stuffed moose. I knew she’d be incredibly disappointed in me if I forgot. They then gave her a shot of anti-seizure medicine, and 15 minutes into the ride to the hospital the seizures began to subside.

We were then admitted into the hospital, and she went into what is known as postictal state. It’s like she was there, but she wasn’t. She remained extremely fatigued, and her eyes were fixed. I did not know if I was ever going to get her back.

She slowly hour by hour began to return to her baseline. She even gave us a small grin. Her level of resilience is unfathomable. It has been five months, and we are still working to regain the strength we had lost from this experience, but she continues to push forward. She never ceases to amaze me.

 

The other day my oldest son and I were talking about the state of the world, and I mentioned how lucky we were that his dad still had his job. I wanted to put into perspective that although this is an extremely hard season we are in, as a family, we don’t have the extra added financial stress that some people do. Then my son, at nine years old, looked at me and said, “well, you still have your whole life job.”

My whole life job.

He then went on to say “and you basically work every second of every day, until you go to sleep.” And with a smile he said “you do go to sleep, right?”

Did I mention he’s only 9?

And he’s right.

Caring for him and his brothers is a whole life job. Especially Christopher. He has a rare genetic disorder, congenital disorder of glycosylation. He is severely developmentally delayed and is nowhere near the typical development of his peers. He’s nonverbal, cannot walk, has a feeding tube, and recently has been diagnosed with a seizure disorder.

Being his caregiver is a whole life job. Caring for him has no end.

As children age, independence increases. First, they’re pushing your hands away so they can do things themselves. Then they’re asking you to leave them alone in their rooms so they can talk to their friends. Next it’s the drivers licence, college, adulthood, and starting their own families. Most children grow and become independent. Most children don’t depend on their parents for everything their entire lives.

I know that being a parent is for a lifetime, but not all parents have this “whole life job.”

Not only are we caregiving throughout the entire day but our thoughts are filled with this “job.” We are always weighing every decision with our children in mind. For us, we always worry about illness. We are hyper aware that the next illness could be the one where we walk out of the hospital without our son. The one where we lose him. So, we take his health and wellbeing into account with every single decision we make. Almost daily, we advocate, research, submit paperwork, do home therapies, and more. And this is not just for a year or two. This is a permanent position. There’s no promotions. No switching departments. We can’t resign. There is no retirement.

This is for our whole lives.

As I let it all sink in, it felt heavy. “Whole life job.” It’s beyond exhausting. And not just, ​I need a nap exhausting​. There are days when caregiving is emotionally, mentally, and physically draining. There are days I don’t want to fill another syringe or feeding bag. Or days when my wrist hurts so badly it’s hard to clamp his extension. I have days when I wish I could close my eyes for just 20 minutes on the couch. Days when it all piles up on my shoulders and I don’t know how we’ll do it another day, another week, another year.

But then I look at Christopher and smile. Because he’s here. He’s thriving and happy. When he wraps his skinny little arms around my neck and snuggles in close, I know he’s telling me how much he loves me. This “whole life job” may be one of the hardest jobs I’ve ever held. But I also know that without a doubt, the rewards are far greater than any promotion or accolade. Although, the pain of the lows may be the most unforgettable grief I’ve ever experienced. The joy we feel, and the joy he brings is higher than any high imaginable. The lessons and perspective we have been taught can’t be learned anywhere else. Life with him is incredible.

When Christopher came along he changed our lives. He has made the greatest impact on his siblings. Teaching them compassion, empathy, forgiveness, and perspective on what is really important in life. Teaching all of us what really matters.

Christopher changed me. He changed my life when he came along. My whole life.