Who cares about carers?

Now I don’t mean that in a flippant or sarcastic way, but the upcoming Carers Week has really got me thinking.

Before I had Heidi, when my knowledge of the special needs world was limited, my idea of a Carer was someone who popped in to check on, feed, and maybe dress an elderly person.

I always imagined that they were underpaid for the job that they did, but felt very grateful that there were people out there who could do that kind of thing, as I knew I couldn’t.

At least that’s what I thought!

Fast forward a few years and I am now classed, I guess, as a carer to Heidi, who has complex needs.

But I don’t see it like that. In my eyes, I am a mum to a little girl; I see my SN friends in the same way as my non-SN friends, being mums and dads to amazing kids.

Our roles though are considerably more that “just” being parents (as if that wasn’t enough on its own!).

We are advocates, physiotherapist, administers of medicines, dieticians, trained suction users, emergency trachi-change experts, play-mates, the list goes on.

Thankfully the UK government recognises this extra responsibility and offers a payment to (eligible) carers.

Now, my friends will be jealous when they find out how much it is… drum roll please… carers can claim £64.60 per week, as long as they can demonstrate they do at least 35 hours of care.

I’m no maths genius, but that hourly rate doesn’t equate to all that much, especially considering what’s involved in looking after these little beauties.

One thing to flag is that you can’t claim carers allowance if you earn more than £120 per week – because obviously then you would be far too rich and have so much money that you would end up spending it frivolously and living a life of luxury.

No risk of that happening to us as both Steve and I work.

We both used to be in fulltime employment, before Heidi, and now work part-time to share the care and responsibilities.

I know that we are lucky for now, and that things may change in the future – friends have had to give up work completely, reduce hours significantly, or make other sacrifices, without which family life would just not function.

After considerable challenges, we managed to secure a Personal Health Budget (PHB) so that we are able to employ additional carers.

Our allowance covers 2 night shifts per week and again, we are most grateful for this.

It seems to vary from region to region as to how many hours families are entitled to, but the general consensus seems to be “not enough”.

It’s not like we’re being greedy, but imagine having a new born by, who is up in the night, needing feeds, nappy changes, and cuddles.

Now imaging that going on for 3 years, and beyond, with additional needs. Not too much to ask for is it to have a little help?

When the help does come in the form of paid carers, then they have to be fully trained.

I get this, and I wouldn’t want to leave Heidi with anyone I didn’t believe to be fully competent.

But no-one trained me, no-one showed me how to lift her as she’s got bigger, and when I asked recently if we could have the same safe handling training that our paid carers have, I was told no.

It’s something that we’re still looking in to – children get bigger, and lifting them can put pressure on our backs and joints.

I worry that if I was injured, then who would be able to look after Heidi?

Caring for the carer is so important but often something that is just pushed down the extensive list of things to do.

I hope that one day soon the system will be reviewed to make it fairer, to offer more support, and to recognise what is actually involved in the role.

In the meantime though, I’d just like to do a big shout-out to all the carers.

From what I can see on the old Facebook and Instagram, there are people out there who are doing it way better than me…I’m just (as usual) winging it!

I was amazed and humbled by the response I received from that post, but also saddened to see how many other people it resonated with that have been on a very similar journey.

A great deal has happened since that post that I wrote only a month ago.

It is surprising sometimes just how much can happen in our world in just a week or two.

For those who didn’t see my post – Amy had a big prolonged tonic clonic seizure recently.

She hadn’t had seizures since birth, and though I was forewarned they could potentially return, I had naively assumed we were out of the woods and that we had in fact been dealt enough challenges!

How wrong I was.

My post concluded with my hopes of this being an isolated incident and that hopefully things would carry on as normal.

But how boring would that be?

Of course, that’s not what happened!

We were seen for a short EEG initially.

Our epilepsy nurse raised concerns that this would perhaps not be enough and that we may need a 24-hour EEG.

The EEG was conducted and we were told to wait for 2 weeks for the results and that there is nothing they can tell us there and then.

So once again we played the wait and see game and hoped hard that nothing was picked up.

I sort of forgot about the whole thing and continued to immerse ourselves in our busy lives.

We were at a barbecue with friends and we had noticed that Amy wasn’t 100%.

I attributed it to hay fever and kept my eye on her.

Over the next hour she started to spike a temperature, become very lethargic, and have a raised heart rate.

Instead of delaying the inevitable we took her to hospital to be checked over.

We’ve done the whole chest infection game time and time again.

We knew it had to be this.

So, we told the doctors she most likely needed oral antibiotics and that we would like to manage the symptoms from home.

The doctors were in agreement with us and said they would complete one final set of observations on Amy and send us home.

They checked her sats levels (blood oxygen) and they had out of nowhere dropped to 80.

Dramatically, the doctor ripped the discharge letter up in front of me and the nurse immediately began putting Amy on oxygen.

Her sats weren’t going up in spite of the oxygen and suddenly I found myself getting pushed to the back of a group of staff quickly performing medical intervention on my child.

I was petrified.

Once given a nebulizer and humidified oxygen she stabilised, blood gases were checked, a canula was inserted (after many unsuccessful attempts) and by 11:30pm I had set up my little camp bed next to her and could finally begin to breathe again and take stock of what had happened.

Just as Phil (Amy’s dad) and me had time to process it all we were told that her assigned paediatrician happened to be on shift.

We were pretty delighted as it is always good when someone who knows your child’s entire medical history is around.

“The results of Amy’s EEG are back.” She said. “It showed a lot of unwanted electrical activity and we recommend treatment for epilepsy right away.”

I was dumbfounded. We both were.

Still reeling from the severity and abruptness of her chest infection symptoms, we were once again accepting another unexpected, and potentially life-threatening diagnosis for our little girl.

Fast forward a few weeks, and things are tricky. Initially they were fantastic; all the unusual symptoms of her seizures seemed to disappear, our happy little girl was once again focused, alert, and loving life.

But as she has become used to the dose I am starting to see these symptoms creeping back into our daily lives.

Two nights ago, she was having her usual pre-bedtime refusal to sleep tantrum.

She went from angry and distressed to unresponsive. Her eyes began to twitch, her lips flinching, her body mildly convulsing almost exactly how she did during that first shocking incident.

It was happening again.

I tried hard to regulate my breathing.

I hate how the only thing you can do during this time is stand and watch and hope that it will pass.

No one should have to watch a loved one endure this.

Like before, I immediately began to film her so I could send it to her paediatrician.

I had rescue meds ready and was timing the whole incident.

By the third minute she seemed to regain awareness and stop seizing.

She let out an exhausted sigh and drifted off to sleep.

She then stayed asleep for the remainder of the night not waking once.

I have since sent the video to every specialist possible and have been told that a repeat EEG may be needed, along with the introduction of another medication.

I feel fortunate that the times this has happened I have been there by her side.

I also take comfort in being told by people that quite often a seizure is more terrifying to watch than it is to encounter.

This doesn’t provide much solace as I feel I will never truly know how someone feels during these times, but I have to hold onto any positivity I can and stay strong for her.

I have found myself more physically and emotionally exhausted than ever before.

I have had my anxiety medication increased and am looking forward to my first session of counselling next week.

I am so desperate to get myself fighting fit and better for her so I can always be on alert for when she needs me.

I have seen now that these seizures can be dealt with, we just need to continue on our path of trial and error to fight for having our Amy as the happy, alert, curious little girl that she is, and deserves to be.

To everyone out there who has been dealing with epilepsy way longer than us, I take my metaphorical hat off to you all.

So much of our time has been spent making changes to Amy’s tube feeds and dealing with her complex gastro issues, and I had never really considered that we would end up on embarking on a neurological extravaganza on top of this.

I used to always marvel at the families who deal with epilepsy and wonder how they deal with the whole thing, and I feel that we are only now seeing a snapshot of what some people must go through on a daily basis.

These kids are so incredibly resilient and strong,

I’m in awe of how Amy just plods on and has that drive to love her life in spite of all that she has going on.

Wishing you all a happy half term of memory making and smiles.

It means that the person who depends on me has all the help they need: not just to make their life possible, but to make it happy, comfortable and fulfilling.

It means that I don’t have to worry whether they are being cared for properly: I know they are getting the best, most loving, care.

It means I will be missed when I am gone.

It means I don’t look into the future: most of it is obscured by dark grey clouds of worry.

It means I have to make concrete plans for a future I can’t see and don’t want to think about: who will help him cope with my absence when I am gone?

Who will be there for him to love, and will they love him back?

How much will he be able to for himself by then?

What services will there be still left to help him?

It means I face my own mortality every day.

It means my doctor thinks I am a hypochondriac:

I worry that every small ailment that befalls me might be the start of something serious, and I need to get it checked out, because if it is I need to seek treatment early.

I can’t afford to be incapacitated or to die prematurely — you see, I have someone who depends on me.

It means, conversely, that I don’t always behave in a healthy way: it can take a lot of coffee and biscuits to recover from a difficult morning, or to get me to the end of a piece of writing that someone, somewhere, might pay me for.

It might be cute to think of myself as ‘powered by fairy-dust’, but the truth is I’m powered by rich-tea crumbs.

It means I have to accept stress as part of my life and learn how to mitigate it: and THAT has nothing to do with scented candles and bubble bath – or wine, either.

A hangover will only add to the stress.

It means I must also decline most invitations to social events:

You see, there are very few people who are either willing or able to care for my child, so nights out are precious.

But, if I do come to your shindig, then you can rest assured that you are a very important person in my life.

It means I’m not as good a friend/relative as I’d like to be:

please believe I did think about you today.

I did fully intend to call or message you.

But before I could there was something I had to take care of that wouldn’t wait, or something that came up unexpectedly that could not be ignored or put off, and once again my last thought as my head hit the pillow was ‘Oh bugger, I didn’t get in touch with so-and-so. Again.’

It means that I must also decline any invitation to play with the Competitive Mothers:

You see, I do ‘Punk’ mothering! It’s a completely different game; one which often requires you to make up the rules as you go along.

Everyone who plays it is playing by their own rules: so there can be no competition except with oneself – we’re all just trying to do better today than we did yesterday.

It means I see a whole community of people who are all but invisible to the rest of the world:

other carers and their loved ones. Though I have never met most of them, and will never do so except, probably, via the internet, they are my tribe.

I have more in common with them than with many of the people who are part of my real day-to-day life.

It means I now realise that my other children DID come with a manual, of sorts:

our parents, grandparents, aunts and uncles, siblings, cousins, friends and peers can all give us advice on how to raise a typically-developing child.

But, when it comes to raising a child with ‘designer genes’ most of them won’t have a sodding clue, because they’ve had no experience of it.

It means I know that the words ‘tantrum’ and ‘meltdown’ are not synonyms.

It means that I am resourceful: however, most people don’t call it that, they use terms like ‘weird’, and ‘whatever is she doing?’ or ‘why doesn’t she do something about that’ (see above ‘Punk’ Mothering).

But it means, first and foremost, that I am a parent.

It means that I have someone that I love, and who loves me.

It means that they are not alone, and neither am I.

No matter what organization they happen to work in, volunteers end up touching countless lives.

They give the gift of their time, their expertise, and enrich the lives of so many by also giving from their hearts.

Our family’s life has been impacted by the kindness of volunteers many times.

Two of our children spent three and four months respectively in the Neonatal Intensive Care Unit (NICU) in a hospital that is two and a half hours away from where we live.

To split time between the hospital and life at home with our other children was agonizing, but necessary.

The silver lining was that this hospital is one of the best in the country, and the care they received was impeccable; not only from the staff but from the women and men who came in during the day and loved on our babies when we could not.

They rocked them, fed them, snuggled them, and gave them that close human connection that is so imperative for newborns to thrive.

They would also pop in when we were there and check up on us; not because they had to, but because they genuinely cared.

As the kids grew older and we traveled back and forth to that same hospital for procedures and appointments, our appreciation of the volunteers grew even stronger.

They were the ones who helped calm my kids and keep them occupied before they were wheeled back to the operating room.

After one exceptionally taxing day of back-to-back surgeries for two of my kids,  the volunteers were the ones who brought  an endless supply of toys to my son’s room after surgery so he wouldn’t be bored.

They were the ones who spent hours playing “spa” with my daughter- braiding her hair, painting her toes, and reading aloud to her when she grew tired.

Knowing that our kids were in such good hands allowed my husband and I  to have some time away from the hospital wing to grab a bite to eat, a hot shower, a short nap; time away from the beeps, dings, and whirs of the equipment in the hospital rooms to destress and recharge.

Volunteers also saved the day at a long assessment appointment we had at a building on the hospital’s campus.

My husband and I were able to stay in the room while our youngest son was being examined and assessed, while a few teenage volunteers were keeping our other three kids engaged by playing on the small outdoor playground, having some Wii video game competitions, and reading lots of books.

What could have been a long, stressful appointment trying to manage four bored kids in a small exam room was made much easier by these amazing people.

Our latest encounter with volunteers involved our youngest son’s Make a Wish experience.

A team of two local women who were assigned to help execute his wish went above and beyond with visits, answering all of our questions, and including our other children in the whole process.

His wish to meet Dora the Explorer at Universal Studios in Hollywood went better than we could have hoped for and was followed up just last week with a handmade scrapbook of our trip – made by volunteers- so that we have something to always remember it by.

Many times, I wonder if the volunteers really know how much impact they make on people; especially families like ours with multiple children who have special needs.

I feel like I could say Thank You a million times or write Thank You notes until my hands cramp up and it will still never express the gratitude I feel for what they have done for us.

So, if there are any volunteers out there reading this- you are priceless.

No matter what your field of volunteering happens to be- you will make a difference in so many lives and touch so many people.

In many cases, the work is thankless, sad, and difficult, but please know that you are appreciated beyond words for all that you do.

Your time is limited enough with the demands of looking after your child, appointments and meetings.

You don’t have childcare (what even is that again?)

Your life revolves around your family and you have lost touch with things in the community or friends.

Exhaustion from so little sleep.

When your child or children have high needs it’s natural to become more insular and perhaps isolated.

I used to be there.

I stopped going to all the baby and children things because my children could not cope and it just highlighted to me how different they were.

Even when my children finally started specialist nursery provision I found myself staying home and sleeping or doing shopping and housework.

The only place I ever managed (and only ever now and again) when my children were young was church.

There were other parents of young children there but I never really knew them.

My children needed me in crèche because they could not communicate or walk and any change in routine caused them to scream.

As they sat in their buggy one week though I heard that the church was starting up a parent and toddler group.

I never got out the house and the church was right across the road from my house so I decided I would at least try and go since I had nothing to lose.

It took courage to go that first week.

The second week was a little easier.

The week after was starting to become routine and by the fourth week we were on a roll.

With things just starting out there was less noise and everything was new so my children could crawl or roll at two years old as much as they wanted and no-one commented.

Then just a few months after starting I moved house and the children started nursery.

I actually found myself missing the group.

Two years later and with both my children now at school and having moved back to the area I heard one week in church that the toddler group needed someone to help out every week.

It was just one and a half hours a week and didn’t need any preparation or special skills so I thought I would try it.

Four years later and I still volunteer at Little Hands Toddler Group.

So many of the children have moved on to school and I have held babies in my arms that have went on to come weekly for their full preschool years.

I have seen sisters and brothers arrive and grow and bought Christmas presents for over 50 toddlers for Santa to give out at the party.

I set snacks out for over thirty children every Friday morning and fill a full community centre room with toys that were once played with by my own children who are now almost ten!

While I do have to miss some weeks due to hospital appointments and meetings for my children I look forward to my Friday mornings singing nursery rhymes and talking to parents of all ages and backgrounds while their little ones play.

Volunteering for something in the community as a special needs parent has benefitted the toddler group so much.

They gain a reliable and committed member who has lived experience of older children and has lived through the teething, weaning, moving to the cot bed for the first time and saying those first words (well actually I haven’t ever had this one but that’s ok!).

They gain someone willing to haul toys out of a cupboard, cut endless bananas for snack, hold a crying baby to give a weary mum a break, and who doesn’t need to rush away for nap time so can put the toys back away in the cupboard ready for another week.

But it’s far from one sided!

Here at three things I gain by volunteering:

1. It takes my mind off my own troubles.

When my son has seizures, MRI’s to check the growth of his brain tumour, isn’t sleeping and can’t speak at ten I could easily become consumed with the weight of the world on my shoulders.

Taking just 90 minutes a week away from that helps my mental health and reminds me that everyone has troubles of their own too.

2. It connects me with other people.

Some weeks other than professionals directly involved with my children the only other people I see are the mums and dads and grandparents at toddlers!

My life is isolated but so are many of the families who come to toddlers.

What I discovered is that for some the only time they get out in their own community is for that Friday group.

Connecting with other people is powerful and sometimes we find we have much more in common with others than we first realise.

3. It opens the way for my whole family to be part of the wider community.

It’s more than just that 90 minutes a week.

While the parents and grandparents at toddlers don’t get to meet my special needs children during the group I often see some of them about in the supermarket, the park or the library.

By volunteering at a community group, I have broken down barriers and now find so many of the people from the group want to talk to me and meet my children when they see me out-with the group.

They respect me for helping somewhere I don’t need to and that brings a respect for my children and their needs too.

It’s not the first time a little toddler from the group has ran up to me in Asda and wanted to show me they have been practicing Incy Wincy Spider.

They don’t bother that my son in a wheelchair at all and my son loves watching the toddlers singing and doing actions.

It’s only recently that many of the mums and dads from toddlers have worked out why I sing all the nursery rhymes while using Makaton.

It’s because almost ten years after my own son was born he is still at the stage where I am singing and signing nursery rhymes to him too.

I am not anyone special. I am a mum who loves kids.

It’s refreshing and exciting seeing other children meet milestones that my own children have yet to or may never reach. Instead of getting bitter volunteering helped me get better.

I could spend my Friday mornings sleeping, watching TV or scrolling through Facebook.

Instead I pull toys out a cupboard, sing the wheels on the bus three times over and wipe up other children’s mess.

I arrive tired, emotional and full of worry but leave invigorated, happy and full of hope.

I can’t recommend volunteering as a special needs parent enough.

It helps everyone and I have never regretted it.

Oh, and it’s good to see other people’s children scream as much as mine even when they can speak!

See we have much more in common with others than you think!

Try volunteering! You won’t regret it!

It was something else that was accepted, but there was hope that it would stay flexible and could be straightened back into place through therapy and equipment.

There seemed to be no major immediate concern, and we were told that it would be monitored through x rays.

The x rays were a difficulty in their own right, I remember our first trip the spinal consultant, being sent round for x-ray, and being mortified by the huge, hard chair type thing that Zachariah was expected to sit on.

I remember worrying over how we would facilitate it, and how Zachariah would tolerate it.

It seems to be an issue throughout the hospitals…the lack of appropriate equipment for those with severe disabilities, those who depend solely on a carer to lift and put them into new positions.

It’s the same when we visit clinic, and we are expected to put Zachariah on our laps upon the scales to try and get the best possible reading of his weight.

It’s just not safe, nor is it practical. I do wonder how they manage to weigh and measure older children, and even adults.

Anyway, coming back from my little drift, once we’ve managed to prop Zachariah into sitting position, trying our best not to prop too much, as after all, we’re trying the get an image of his scoliosis, we head back round to clinic and await our turn with the consultant.

In the past these consultations have been, as I’ve touched on above, fairly easy to digest, it’s a ‘we’ll wait and see’ kind of conversation.

There’s been a positive vibe that Zachariah’s spine may fix itself slightly to make it less of a problem.

But last month… 13th April, I sat in the room with Zachariah and my Auntie and received the news I had dreaded.

‘We need to talk about surgery Mum’.

My heart literally pounded, but I kept my cool.

As after 4 years of meetings with different Doctors and Consultants, I have gotten used to keeping my meeting face on, a face that stays unemotional, a face that needs to stay straight in order for the brain to receive the information that’s about to be shared.

I nodded and listened so intently to what the Consultant had to say, it is fascinating how incredible these people are and what they can achieve to make your child’s life better.

He explained that there are 2 types of spinal surgery, but only one that he felt appropriate for my son… the rods.

Now I won’t pretend that I knew exactly what this meant, but he assured me that it’s extremely successful, they put some rods in the spine to help straighten it, they then need to be monitored every 6 months as the child grows.

Sounds so flipping simple when you type it out!

But as every surgery has, this surgery comes with risks.

One risk is Zachariah’s health declining, so to help with this, we are being referred to respiratory team to give Zachariah a good check over on the lungs and general health to see if he’s well enough for the surgery.

So much information once again.

I felt so overwhelmed as I left that meeting and couldn’t wait to get home and digest it properly.

No surprise though, as I walked away I burst into tears, it was too much this time, my baby needing such a huge operation was just too much!

I wept as my Auntie comforted me and heading round to the cafe for some much-needed refreshments.

I tried talking it out and tried understanding it, but my emotions were too strong to allow my mind to think.

It’s so easy for people to say, ‘it’s for the best’ and ‘it’ll be ok in the end’, but when it’s your baby, you need to allow your emotion to take over and give yourself time to process it in your own way and time.

We need to be kind to ourselves and not rush through things, just because the world says we should.

My Auntie knew this, and got it, she told me how important it will be to talk with Tim when we got home and spend time together being upset, but then also looking at the benefits and making that decision together.

Even though it still doesn’t sit completely right with me, now I’ve had 3 weeks to digest it all, I can see how much it is needed for Zachariah to have the chance to live a longer, healthier life.

I know it’s for the best and is muchly needed before the spine begins to affect the organs, especially his lungs.

I have now found a new hope that this surgery may bring the goal of Zachariah sitting unaided back into the picture.

This one visit to the hospital was a huge challenge that we are overcoming, it reminded me how complex my son is, and how much he relies on the care of loved ones and the expertise of professionals from the wonderful NHS.

Huge love and respect for the NHS and everyone who helps make it a positive, working organisation.

I wrote this blog to document this huge news, and to share with you a day in Zachariah’s world. I really hope this helps someone too.
Much love,

Rochelle (My Daily Miracle)