That’s all I Know So Far…

“You look pale, how are you really?”

15 days before I’d had major abdominal surgery and was discharged from hospital a little over 24 hours later back home where my oldest three kids were eagerly waiting for me with the newest addition to our family. At this point, I was still leaking from nearly every orifice in my body, as you are would do after having a baby, and I was still pretty jacked up on painkillers to allow me to function outside of my bed. I was also hosting an assessment with a sleep system rep, the physiotherapist and the occupational therapist for my 5-year old son.

My husband had gone back to work after his paternity leave the day before, and I had only been discharged from my midwife that morning. A week previously I was in so much pain from surgical complications I hadn’t been able to get out of bed. But when you have a child with complex needs you don’t get maternity leave. Nobody picks up the mantel for you, nobody follows up on all the things you’ve been chasing for weeks, no one challenges the duff decisions that were made in your absence. It’s still all on you.

So that’s how you find yourself nursing your newborn in one hand while firing off emails with the other, and when the physio gently asks if you’re really OK you might find yourself leaking quite profusely from your eyes. Because the world is already tough for new mums, and it’s even tougher on new mums who are also parent carers. So what have I learned from my experience?

There is a very lovely poem that ends with this verse “The cleaning and scrubbing can wait till tomorrow” but children grow up as I’ve learned to my sorrow. So quiet down cobwebs; Dust go to sleep! I’m rocking my baby and babies don’t keep.” Author: Ruth Hulburt Hamilton

Now granted, this is talking about housework, but the principle is the same. Our babies are only little once, and this precious time goes so fast, so whether we’re talking about your disabled child or a sibling, we need to prioritise our mothering over the admin that comes with being a parent carer.

It’s easy to get distracted by the admin, there are so many professionals, all vying for our attention, and lots are unwittingly giving the impression that their time is more valuable than ours. Sometimes I feel pressured into agreeing to appointments that aren’t convenient. And then there’s the mum guilt. The feeling that I must do everything I can to improve his outcome, and his quality of life. The anxiety that each bad decision or delay might have a tangible impact on his future.

But really, when I think about it, I don’t want to be too busy adminning to be his mother or mother to my other children. If I strip it down to basics, what are the most important things I can think of for him? For him to be loved, and to be happy.

When I strip it back to those two things I realise that all the things I think are so important to do right now often do not make him more loved, or happier. Often I can choose family time over that appointment, or chase that email. Not always, but often.

So right now, as we all adjust to a new baby in the house, I want to choose family. I want to choose watching boxsets on the sofa while the baby feeds and sleeps, I want to choose cuddling with my big boys as they struggle with feelings of love and jealously. I want to choose to figure out how to leave the house with four kids. I want to choose all of that and more right now because the rest can wait just a little longer while I’m on maternity.

Silence like a Cancer Grows

If you asked my friends what I’d been occupied with for the last few weeks they’d probably tell you it’s my new baby. As cute as she is, she’s not the only thing keeping me up at night! You see we’re having a bit of a nightmare at the moment. It all started back in March, when Thomas’s carer took a lot of annual leave and then some sick leave, before handing in her notice in June.

I was 6 months pregnant, we were rapidly approaching the summer holidays, and we were already on our knees having been managing without her for several months. When you add in the backdrop of covid, and everything we’ve had to navigate in the last year or so, we just didn’t have any energy left to figure out what came next.

I felt trapped between a rock and a hard place. I was entering that stage of pregnancy where I wanted to burrow down and nest, not bring a stranger into our most intimate world. And we were exhausted, the idea of training someone new felt too much, but of course, it wouldn’t get any easier until we started training someone!

Very quickly I realised that finding a new carer would not be straightforward so I started planning ahead. Come September my husband was going to be expected back in the office and I would have two children starting school at the same time in buildings on separate sides of the town. Clearly, I was going to need help!

So I applied for school transport. By virtue of his disability, Thomas is eligible for free school transport. I was nervous though, I’d heard that suction trained escorts could be difficult to find, and Thomas needs one to keep him safe. I chased our application a few times, anxious to ensure things were in place.

I was going to continue to detail the back and forths we’ve had, but honestly, I could write a small novel on it. Suffice to say that this small issue has blown up enormously. We are now into November, we still have no transport, we’ve triggered a funding review which is threatening to cut our funding in half, we still have no carer, and no opportunity for respite. My husband has been unable to return to the office because I need him at home.

There appears to be a local issue with providing suction training for anyone not employed by the Local Authority which means Thomas cannot attend any service that isn’t run by them without one of us present. There is also a national shortage of carers.

It is a complete and utter red-tape nightmare. No one knows how to move the situation forward. I am literally pulling my hair out over it. But almost no one knows. I haven’t told any of my friends the full extent of the nightmare we are living. Why? Because it is boring as hell. And nothing ever changes or improves so all it is for me to say is to repeat the rant I had the first time I mentioned it. And each little thing on its own doesn’t sound like much, but the full history is huge and convoluted.

And the more I don’t talk about it, the harder it is to talk about. Sometimes I start writing messages in my WhatsApp groups and then delete them thinking they sound so random and pointless and that I just don’t have the energy to explain why it’s such a problem.

But it means I also don’t have the energy to explain why I’m not doing other things. Or the energy to hold space for other people’s difficulties. And eventually, I don’t even have the energy to contribute to the everyday chit chat.

So slowly I fade into the background. The small cracks that once lay between me and my friends have become gaping chasms that feel impossible to bridge. Made so much harder in this space and time where social connections are so torn and frayed as a result of the pandemic.

So I really need this issue resolved. Not only for the support and security it offers my family and Thomas, but because I need my energy back. I have some bridges that need building while I can still see the other side!

5 Things Not to Say to a Parent of a Disabled Child

When you have a disabled child people often say the most ridiculous things. I’ve heard a few over the years and here are a few of my favourites and why they’re really not helpful and at times quite upsetting…

“God only gives special kids to special parents”

When I hear this I want to reply “Well what does that make you Sharon??” But seriously, God does not give special kids to special parents. Most of the time I am fairly uncertain as to God’s role in what happened with my son. Did she stand by and let the worst happen? Or did she step in and save him?

My mum said to me quite early on if ever there was evidence that there was not a God, this is it. Meaning, how could any loving God allow this to happen to a baby. I can certainly see her logic, especially when my boy is plagued with pain and discomfort. But when she said it, we were just so grateful that he had survived, that for me I felt if anything, this was surely evidence that there was a God, and that she had saved him for me. These days my faith is as uncertain as ever, but I do know that I was not handpicked for this job because however special my son might be, I am positively mundane, which leads me to….

“I don’t know how you do it, I couldn’t!”

I promise you, Sally, you could.

There have been many times where I wished I didn’t have to do it, but unlike a faulty mobile phone, you cannot send a baby back when it doesn’t support all the latest apps. So where you want to, or not. Whether you believe you can, or not. You just have to. Every day you put one foot in front of the other and before you know it, you are doing it, and doing it really rather well!

“God only gives us what we can handle”

God clearly thinks rather highly of me! But actually, this too is rubbish. Once again I wasn’t handpicked for this role, and the idea of The Almighty sitting down to assess how far to push me this week is definitely not one I can get on board with. And you know, we all have our limits. You can push and push and push and eventually I will break, just like anyone will when placed under extreme pressure. Because I promise you, there really isn’t anything special about me.

“Everything happens for a reason”

Another platitude that plays into this idea of a grand design. One of the hardest things to learn to accept, in my opinion, is that not everything happens for a reason. Sometimes really awful things happen to good people for absolutely no reason other than bad luck. It turns out there is so much in life that is beyond our control. And maybe there is a sadistic God testing us? how very old testament! But that’s not an idea I can get behind, and it is definitely not a God I can have faith in.

So maybe some children are just disabled. And at this point, I feel I need to point out that having a disabled child isn’t even bad luck. The circumstances around my son’s injury were awful and difficult, but having a disability isn’t bad luck, it just is. This leads me on to…

“As a parent, it’s the worst nightmare”

It’s not. It’s just not. My child is not my nightmare, and he shouldn’t be yours either. There is no denying that being a parent of a disabled child can be challenging. But 100% of those challenges come from the society we live in and the systems that don’t provide the necessary support. My child is all kinds of awesome, from his cheeky smile to his wicked sense of humour to his immense Paw Patrol obsession. I’m as proud to be his mother as I am for any of my other children, and you would be too if he was yours.

So what should you say?

If you’re anything like some of my friends you might have read this and realised that you’re guilty of expressing similar sentiments (with the best of intentions!) And are wondering what you can say that would actually be helpful? I’ll tell you what I told my friends.

We know there are no magical answers, no one can fix the broken systems that fail to support us and our children, and no one can take away the hurt and pain of disability-related illness and trauma. What we need is for our nearest and dearest to hold space for everything we might be feeling while we support our children through any difficult patch.

A significant amount of the usual platitudes are othering, are setting us on a pedestal, and making it hard for us to be truthful about the times where we are struggling. Usually just acknowledging how crap it is all we need. And coffee. So much coffee!

One year later…

It seems a bit mad to think we’ve been living in this covid limbo for 12 while months.

The week before the schools closed we assessed the situation and decided we felt safer with our boys at home.

With Thomas’ health needs we were concerned that he would be very vulnerable to this mystery new illness and decided not to take a chance.

I remember the reply from my eldest’s school, after I’d emailed them to advise them of our decision.

They suggested that we review in a week.

I felt a surge or panic then.

What would we do in a week? Would it be any safer? How long could I keep him home before I got fined?

It seems silly now with hindsight.

A week later schools shut and he didn’t return until September!

So we started the pandemic feeling uncertain and anxious.

Just how dangerous was this virus? Could we protect our family? Could we get a food shopping slot?!

And even back then, in March 2020, moments of sheer panic – has the world irrevocably changed for our family? Again?

The months rolled by, the days blending together.

Just the five of us, and later Thomas’ carer.

It was like the longest chill out weekend ever. Like many I baked. A lot. And I sorted and tidied a lot.

And we survived.

See we’ve already lived through one event where our envisioned future was ripped away in a moment.

We’ve been living with fragile health for five years, where a simple cold results in HDU stays.

We’re used to isolation and being stuck at home.

It was like sliding our feet into a worn pair of slippers.

Even as we hesitantly started the new year, it still felt like we were walking well trodden ground.

Grateful when the schools closed and we could retreat safely into our familiar and safe little family bubble.

And now here we are.

Over 12 months later. We’ve spent the best part of the last year shielding.

My eldest and Thomas managed the Autumn term at school, while myself, my husband and my youngest stayed at home to reduce our exposure as much as we could.

My Eldest went back to school 2 weeks ago, it’s strange being stuck at home without him, but the school run is a welcome reprieve and a great way for me to dip my toes back into society.

Thomas is still shielding until the 31st of March.

The government says that shielding can end at the end of this month, because all vulnerable adults will have been offered a vaccine by this point.

I’m not really sure where that leaves those of us with clinically extremely vulnerable kids, especially young ones like Thomas who is just 5.

Is it really any safer for him out there?

As we approach the end stages of this pandemic we remain uncertain and anxious for our boy.

I still have moments of panic that our world has in fact changed for good.

Cerebral Palsy Awareness

Six years ago I didn’t know anyone with cerebral palsy, and I had never met a disabled kid.

Now I’m a proud parent to a 5 year old with Cerebral Palsy, and for Cerebral Palsy Awareness Month I’d like to tell you a bit about my son.

As a baby, Thomas was very cuddly.

He couldn’t be happier than when he was in someone’s arms.

He adored his big brother from the moment he met him.

They would often snuggle up on the sofa and watch YouTube videos together.

As he got older he developed a love of music and coloured lights.

His favourite toy was a ‘Beatbo’ a singing and dancing robot with a light up tummy.

He would spend hours pressing the buttons and squealing with laughter laughter as we danced around the kitchen.

As a young toddler he really loved Sponge Bob Squarepants.

We knew all the songs from the early series as it was played on repeat for months.

He loved the music in it and Patrick’s slap stick comedy made him his favourite character.

For a long time everything we bought was sponge Bob themed!

At around age 2 he discovered Paw Patrol and dropped Spongebob like a hot potato!

Paw patrol is still a firm favourite and his favourite character is Marshall, he finds him hysterical!

Now everything is Paw Patrol themed, his toys, his clothes and his bedding!

From very young Thomas showed quite the sense of humour, and like a typical boy he particularly enjoys toilet humour!

He enjoys playing pranks on people and struggles to keep a straight face when he’s done something and you haven’t noticed!

He’s a really sociable little boy, he loves spending time with his friends and people watching.

He’s always enjoyed a trip to the coffee shop, or around town.

He loves buying gifts for people.

He also really enjoys spending time outside, especially when it’s a little windy, he loves the feel of the wind in his hair.

He’s a bit of a thrill seeker so loves swinging high in the swings at the park, or a go down a fast slide!

At the moment Thomas really enjoys baking, he’s experimenting with recipes to see how they turn out, he does have a sweet tooth so tends to add extra sugar!! His favourite is chocolate cake.

His favourite book at the moment is Dear Zoo, and the Elephant is his favourite animal.

His favourite colour is Orange, and has been for a while.

He likes playing board games, you have to keep an eye on him as he will try and cheat, even though he doesn’t need to as he is also uncannily lucky!

Thomas has quite the temper when things don’t go his way, and he’s exceptionally stubborn like the rest of his family!

There can definitely be fireworks between him and his brothers!

Like a typical sibling he does like to wind his brothers up, and is often told off for smacking them around the head or pulling their hair.

He recently started school, he likes going to school, but doesn’t like having to learn.

He much prefers the play time with his friends.

All in all I think he’s a fairly typical 5 year old in many ways.

This March, I’d like to remind people that Thomas may have cerebral palsy, but it does not define him.

He, like every other person, is a beautiful, unique human who is many things outside of his diagnosis.

Therapy

Physiotherapy has been an important part of our lives since Thomas was born nearly 5 years ago.

He has severe dystonic cerebral palsy, so it is essential not just for building new skills but for managing his condition and preventing it delaying further issues that often occur as a result of being severely dystonic and non-mobile.

If you ask around, you’ll soon realise that, much like most healthcare, physio input is very much a post code lottery, and for the most part we felt like we’d won the jackpot!

Thomas was very lucky to be allocated to a passionate and dedicated physiotherapist as soon as he was discharged from NICU and for the most part he has seen her fortnightly during term time ever since.

Last year his named physio unfortunately had a period of long-term sick leave leaving Thomas without regular input for around 6 months before he was allocated a new physio. We quickly noticed a difference in his quality of life, as he began to experience more periods of painful dystonic spasms, and during this period his hips started to migrate more significantly.

As a result, we began to consider private therapy options and on the recommendation of a good friend signed Thomas up for a week of intensive Cuevas Medek Exercise (CME).

It was an amazing experience.

The therapist came from New York and was exceptionally skilled at handling Thomas and pushing him to do things that he’s never done before. For the most part, in typical Thomas fashion, he loved the therapy, laughing through his sessions. By the end of the week we could see a noticeable improvement in his trunk control and enthusiasm to be sitting and standing with support.

We loved it so much that we went for another week a few months later. It was expensive though, and we needed help from our friends, family and local community to raise funds to pay for it. After seeing the improvements though we were determined to access as much as we could.

We signed up for the next session due to take place in May this year and were happy to see the return of his original therapist who after seeing the improvements was quick to recommend a block of weekly therapy to build on the skills he’d learnt.

And then, of course, covid-19.

All therapy ceased, the block in May was cancelled and we bunkered down at home to keep Thomas safe. 6 months later and we are still uncertain when regular therapy will resume.

Travel restrictions, and the awful situation with Covid in America means there are no plans for therapists to travel in the near future and our local physio department have not updated their position on regular face to face sessions since March.

As before, we are seeing the impact on Thomas as he starts to lose skills and experiences more pain. It’s hard to understand the rationale behind the restrictions given that physiotherapy is an essential healthcare service for a childlike Thomas and I wonder whether this is a common experience around the country?

I’d love to hear your experiences!

Our New Normal

Our world has been a pretty small place this year, our household went into lockdown in early March and we proceeded to stay there right through the worst of the pandemic until the shielding program was paused on August 1st.

Through social media I was aware of the enormous community effort to keep spirits up and help the vulnerable with shopping and picking up meds etc, but it all felt so far away. Locked in our home, life for us carried on fairly normally, like it was one long weekend. The longest weekend known to man!

On a day to day basis nothing was that unusual, although as the days mounted up into weeks and months, the usual feelings of isolation and disconnection began to build. We watched from the window as life began to pick up pace outside, more cars, more groups of people walking out together. Soon we were itching to get back out there with everyone else and figure out what our new normal was going to look like.

The first time I drove out to take Thomas to A&E for unidentifiable pain was a surreal experience. During lockdown, families had been painting life-size cut outs of children and hanging them on the park fences holding hands as a symbol of hope and solidarity to other families taking their allocated daily exercise.

As we drove past the park, the cut outs were faded and sagging with many fallen to the floor and trampled on. There was this unshakable feeling that our local community has been through something that we had missed. They were all in it together, while we were isolated at home.

Since then we’ve managed a few trips out of the house for appointments and the odd fun trip for the kids. Gone are social distanced queues outside shops, and the one-way systems. There are a few people around but nothing has been overly busy.

And of course, almost everyone is wearing masks.

It’s very strange going about the town with a mask on, I realise belatedly that no one can see my smile of gratitude when they step aside to let me pass or greeting when I walk through the shop door. I’m trying to remember to say thank you, or hello to bridge that connection with other people.

As we sprint into September and are preparing to send my older two children to school everyone keeps asking me what I will do with myself. Pre-covid I felt like I was constantly running around, chasing my tail, trying to get everything done. The vast majority of it was outside of the house. Now I look ahead and I’m not sure how I will fill my days.

I’m still not overly comfortable with the risks of being out and about so I suspect I will still limit them, and I would have to take my two-year-old with me anyway. I’m really not sure I can cope with him sucking on the trolley locks at the supermarket or picking everything up off the shelves!

So, I suspect that our new normal will continue to be very cautious, spending lots of time at home, and trying to recharge again just in case we have a second lockdown over winter!

Starting School in a Pandemic

When Thomas was born almost 5 years before I remember very clearly the sit down, we had with his medical team at just one week old telling us what we could expect after his grade 3 HIE event.

The insult had been catastrophic, they were certain he wouldn’t walk, that he would be severely visually and hearing impaired, that he wouldn’t be able to control his limbs. He would be able to speak or eat orally and the final nail in the coffin, he would likely have severe cognitive deficits.

It was a bleak warning of our future, and we started our new life as a family of four very uncertain of the path that lay ahead. We spent Thomas’s first two years in crisis, managing chronic reflux, failure to thrive, uncontrollable dystonia, and his abject misery at all the challenges life had seen fit to throw at him.

After his second birthday, we slowly began to emerge from the shadow of the dark cloud that had been looking over us. He was much more stable, finally growing well, and generally much more comfortable physically. He also started a small specialist nursery.

Quickly we watched him start to blossom, to thrive.

This cheeky personality started to emerge, a lightness to him that we hadn’t fully appreciated before as he laughed and smiled along with us. He was engaging in conversations, looking for external stimulus. Regular ophthalmology assessments eventually concluded that he had good enough functional vision, he was signed off completely by audiology.

He wasn’t walking, but he was rolling and using his feet to push himself around the floor. He started trying to sit. He would weight bear and then started using a walker to move around at nursery. After months and months of struggling to engage Thomas in the basic communication systems his speech and language therapist suggested, we took a gamble and trialled him on a more advanced system of a PODD book.

Suddenly he was flying, communicating all sorts just as it became time to start considering schools. Therapists started to ask me where I thought he might go, I had assumed to the local special school, don’t rule out mainstream they said. Your lad is very bright.

I went home in shock.

Honestly, many a time it had been hard to imagine getting to school age, but I had never considered that he might go to a mainstream school and after having a look at both it was clear that he would be much happier in a mainstream school.

We are very fortunate that we live locally to a mainstream school with a physical resource unit, meaning they are well equipped to support Thomas with his physical disabilities and the additional learning support he will need for managing communication. The day the school accepted his admission I was on cloud 9!

Preparation began in earnest, he needed a more advanced communication system to allow him to participate better in class, nursery began testing his knowledge or numbers, colours, shapes, phonics and transition plans started to be drawn up.

Then a pandemic was declared and the country went into a national lockdown. Due to his physical disabilities Thomas was considered extremely clinically vulnerable and we were shielding.

As the lockdown dragged on and on, I became more and more concerned. Obviously the closure of schools and nursery was having a big impact on all children, but it felt even bigger for Thomas, knowing he was already having to work so much harder to keep up with his peers to start with, this was only going to exacerbate that!

It then became clear that Thomas would not return to his wonderful nursery, that he would be starting school in September with no formal transition. Honestly, a few tears where shed once I realised that he wouldn’t be able to say goodbye to his nursery friends, or attend his nursery graduation, and even more important rite of passage for Thomas and us.

As the summer holidays roll by it’s been hard to believe that he’ll be starting school in just a few weeks.

I had to give myself a stern talking to in order to get his uniform ordered in good time! His new school have been great, trying their best to get to know Thomas and be set up for him. They even managed a brief home visit to meet him and bring him a little pack full of pictures and activities for us to help prepare him.

Of course, given his medical needs there have been lots of other issues that have needed great planning, making sure that staff can tube feed him, or suction him if needed. Looking at how physiotherapy and speech and language therapy will be incorporated into his school day, making sure the school have the right equipment for him. All done virtually or socially distanced in PPE of course!

This really hasn’t been the transition we were hoping for, and there is still a lot of worry about how safe it will be come September, but I am so excited for the next stage to start and I can’t wait to see where Thomas will take us!

My Love/Hate Relationship with Fundraising

There is one part of being the mother to a disabled child that I really hate… Fundraising.

You might not think they necessarily go hand in hand, I didn’t back before. But when you have a child with such complex needs you soon realise that this magically safety net, we thought we had is full of big gaping holes.

My husband and I have always valued the NHS and the importance of contributing towards it, we would always say how worthwhile it was knowing that should something happen then we would be looked after if needed.

Then something did happen. We had Thomas who came with a whole host of diagnoses, professionals and additional needs. It really didn’t take long before we started hearing the words “I’m sorry but there just isn’t funding for that”.

“I’m sorry, I know you cannot access a supermarket, but we cannot fund the piece of equipment that would allow that”. To begin with it was a mild frustration, the items we needed were just a few hundred pounds and we found ways to self find them. Thomas had a few birthdays and Christmases with pretty boring presents!

But Thomas got older, and our collection of equipment got bigger. He needed an indoor seating solution, he needed a wheelchair, he needed a relaxing seat, a bath seat, a standing frame, a floor seat, a therapy bench, a walker… The list goes on.

I spent hour after hour in appointments with specialists or researching on the internet for the equipment that would provide him with the right support and allow him to engage in family activities. Trouble is, once we worked out what we needed I kept hearing “I’m sorry…”

“… It’s too expensive”

“… We don’t have a contract with them”

“… It’s not our responsibility”

“… It’s not our budget”

Our Occupational Therapist told me that her department annual budget for all the children on their case load was less than £50,000. Now, to be fair, I don’t know how many kids are on their case load, but that’s not a lot of money. Not when the stair climber we most recently took receipt of cost almost £10k.

And it’s not that dissimilar with therapy, we’re lucky, we’ve managed to access NHS physio and speach and language pretty much fortnightly from birth. That’s very unusual, and it’s set to drop once he starts school in September.

They just don’t have the staff to provide more than that. They don’t have the funds to provide the equipment that best meets his needs. Now I’m not an easy woman to say “No” to, but sometimes even I have to admit defeat.

So, what then are our options? Despite having a comfortable income, we can’t keep up with the spiralling costs of having a disabled child. As an example, last year we spent nearly £6,000 on additional therapy. For that kingly sum I’m sure you’re imagining we might have seen a therapist very regularly, perhaps a couple of times a month?

You would be mistaken, it paid for 10 days on intensive therapy, approximately thirteen 50-minute sessions. It was brilliant and very worthwhile, but it gives you an idea of the sums we are talking about.

Very few families will be able to maintain those sorts of costs year on year, so the only other avenue available to us is fundraising. There is nothing quite so humiliating as having to ask friends and family and strangers over and over again for money. But us special needs mumma’s are like lionesses, ready and prepared to do anything for our cubs.

So, we make social media pages, and start selling our cause. Not too upbeat, people need to understand that you’re in need, but not too depressing as people might get bored. Exposing your child to public scrutiny, constantly weighing up how to protect their dignity while showing people why you are so desperate to beg for money.

It can leave a nasty taste in the back of your mouth. But then, then there are all the wonderful and generous people out there who support you over and over again, cheering you all on, helping you out as much as they can and it reminds you of the beauty in the world and humanity.