Having just spent a lovely week in the gorgeous north east of England it felt like a good time to sing the praises of one of the best attractions we visited while there. As luck would have it, we had some good weather so decided that we’d take advantage of this to visit Beamish, a large open-air museum located in County Durham.

The first thing we noted was just how big the site actually is, and more to the point given that the Dude’s wheelchair cannot be described as lightweight, the site is on a rather large hill. This is County Durham after all, and we had remembered to bring his wheelchair battery pack, so this didn’t pose a huge issue. The situation was made even easier by the provision of a regular tram/bus service that runs around the entire site – for those who are wheelchair users there is a specially adapted, vintage, bus that comes on demand.

Our absolute favourite was the 1900’s street with its pharmacy, bank and Hardware store (where we lost my Mum for a pretty long time as she chatted to the volunteer about products she remembered from HER grandparents’ home!). The volunteers could not have been more helpful with the wheelchair, each taking the time to chat with visitors about their own particular part of the museum.

The site itself is pretty easy to move around, although its worth being aware that there are some limitations.

The dentists in the 1900s area for example is located, as it would have been, in a small terraced house which was absolutely not wheelchair accessible – at this point the Dude was having an afternoon nap, so the more mobile of us took turns to go inside and cringe!

Beamish has really taken accessibility to heart, the wheelchair adapted bus was fantastic (and very welcome) but the biggest impact is made by the Changing Places located fairly centrally in the 1950’s area of the site.

While it’s not going to be everyone’s attraction of choice it is definitely somewhere we will return to; as a family it had enough to entertain everyone from the Dude (12) up to Nana (who is a bit older than 21 shall we say). As an educational day out it really is superb, and it definitely gets top marks from us for the changing places and accessible bus. Definitely worth a visit if you’re in that part of the country.

Recently, the Chancellor stated that he wanted to make it easier for people to get back into work. Without going into the boring details, one of the people this covers is the Dude’s amazing, long suffering and awe inspiring Dad.

As the Dude’s main carer, Mr V gave up his job over 6 years ago to become our son’s full-time carer; for us it was a stark but simple decision to make. Too many hospital stays, too many appointments and too much time at work missed meant we were both at risk of losing our jobs – as the higher earner, it made financial sense for me to continue to work full-time (gah!) and for him to hand in his notice. Overnight, our family income was slashed.

My boy’s Dad usually starts his day around 6am, if not earlier, when he gets up to have his own breakfast, sort out the mornings medications, the Dude’s breakfast, and to get him up and ready for school while I get myself ready for work.

He then acts as a transport assistant, joining our boy in his taxi to and from school.

As his parent, he is allowed to administer the lifesaving medication and oxygen that is needed in the event of a seizure, that his Council-provided assistant/driver are not. Once home, he does the usual housework/dishes/laundry, batch cooks and blends meals for our son, keeps track of hospital appointments/medication levels/orders with pharmacy. While I am at work, he deals with all the meals, medications, bathtime, etc. The only things he doesn’t manage on his own are therapies such as physio, developmental therapy etc., as they require us both.

If he was a paid carer, he would be paid the national minimum wage.

This, anyone will tell you, is pittance for the work carers do and for how much of a difference they make to our lives. However, as an unpaid parent-carer, all he can claim is carers allowance – until this month this came in at £69.70/week. That equates to less than £10 per day. If he wants to work to get more money coming in, he can only earn £132/week for 2022/23.

To put that into perspective, at minimum wage that is less than 14 hrs a week. Where do you find a job that allows you the flexibility to work around a disabled child with complex medical needs, while only working 14hrs a week? This week he spotted a role at a local discount retailer restocking shelves, 4 hours in the evening for 4 days a week. But it would mean he would go over the threshold and lose carers allowance. After fuel costs etc are taken into account, it would leave us worse off.

Sadly, common sense seems to be missing here.

The obvious answer is to increase carers allowance to a meaningful amount, and to allow carers to claim for more than one person if they care for more than one person! Our loved ones save the economy billions by staying home and caring, instead of relying on social care or the NHS to foot the bill. Isn’t it time that they were recognised for the sacrifices they make?

Recently, we took the Dude off to Birmingham for a weekend. It was meant to be a treat for him, a chance to spend precious time together after a recent hospitalisation and him having to miss out on a few things he’d been looking forward to as a result.

We booked into a Holiday Inn so we could spend two days in the city visiting attractions that he would enjoy; here I absolutely have to say that the hotel and its staff could not have been more amazing. Having called ahead so they were aware that our young man is a full-time wheelchair user, our room was set out to maximise space so we could easily move him around. There was no issue for them to store his blended meals that we brought with us in their freezer and for them to reheat them when we required. Even when other guests were rather noisy shall we say (not excessively), the staff made sure our boy was ok and not overwhelmed.

Safe to say, such care shown to our son made an impression.

Despite living in Staffordshire, this was the first time we had actually visited Birmingham city itself with the Dude since he was tiny… to say it was a shock is an understatement. Accessible it is not. A lack of thought in the planning processes is painfully apparent, as there are steps almost everywhere, disabled access routes are not always clearly signposted and often require you to go far out of your way because no-one thought to put in a ramp for example.

A lift, specifically for disabled access by the canal, is apparently switched off ‘when not in use’… hardly helpful when you’re in a wheelchair and need to get to the upper levels (there is an intercom that needs pressing, which is out of reach of some wheelchair users). The final straw was that while we were there the Great Birmingham Run was taking place… not an issue in itself, except that the route blocked access to every major carpark in the city. In turn, blocking access to the vast majority of accessible spaces. Let’s face facts here, there are already disproportionately fewer blue badge designated spaces than there are standard spaces. Blocking access to every single major carpark so that there is nowhere safe to help a disabled passenger disembark?

Not a good look, Birmingham. Not a good look at all.

The biggest frustration faced by families like mine is that the majority of the issues we face in accessing public spaces are often easy to resolve with a little bit of forethought and consideration. The issue with the carparks not being accessible due to road closures could easily have been avoided if communication had been better and diversions clearly in place.

Ramps are usable by everyone, but not everyone can use steps. It’s easy to forget if this isn’t your life on a daily basis that disabled children will grow into disabled adults – however those individuals are very often just as capable of living full and active lives as anyone else. They want to be able to work and travel around their own cities and towns without being faced with obstacles that are really very simple to factor out with good planning and a bit of consideration. Our experience at the Holiday Inn shows how easy it is to make life easier for disabled people, their actions made us ALL feel valued. The same cannot be said however for the City of Birmingham.

At his previous school, my son was pretty legendary for his ability to reduce otherwise perfectly normal, intelligent individuals into quivering nervous wrecks. He has the kind of epilepsy that can appear like one of those incredibly violent summer thunderstorms, turning a calm and sunny day into a torrential, chaotic maelstrom in a matter of seconds.

Many is the time we’ve had the dreaded phone call to say he was being blue lighted to hospital and to meet him in resus. Inevitably, by the time we arrived he’ll be lying in bed flirting with nurses and looking perfectly fine if a little pale, but not worse for wear for his ordeal. His teaching staff on the other hand invariably look like he’s ripped their soul from their bodies.

If there is anything that comes close to the terror of watching your child stop breathing during a seizure, it’s having to watch SOMEONE ELSE’S child, who you have responsibility for, stop breathing during a seizure. And these wonderful, caring staff had to experience this with my son on a pretty much daily basis.

Since moving to high school we’ve had a remarkably good run without major incident.

We knew it couldn’t last, sure enough a week ago he decided to throw a cracking seizure  into the mix that school hadn’t seen before; so stunning was this one that no fewer than three ambulances were in attendance plus an air ambulance medic by the time Daddy arrived. The first I knew about this dramatic incident was when I arrived home later that evening to the comment from Daddy of ‘he’s broken another one’ referring to the trauma our child had just inflicted upon his poor teaching assistants!

One positive from this is that in we know our faith in his class staff is well founded. They may have felt utterly wrecked by events, but my boy was happily flirting as per usual within hours of the type of seizure that should by all rights have landed him in hospital thanks to their swift actions. They cared for him as well as if he were their own child, and that means the world to us. We know how lucky he is – both in how well he recovered but also in how outstanding both his schools have been.

My contribution to the day’s events? An attempt was made to fuss my child and to ensure he was ok… this overt display of maternal concern was tolerated for about 30 seconds before I was gently but firmly pushed away. Yeah. He’s fine 😊

12 years ago as I awaited the arrival of my first child I had a vague idea of what motherhood would look like. I’d been to the antenatal classes, I was as prepared as I would ever be for night feeds, nappy changes, teething etc. After a rough pregnancy I was very much looking forward to meeting this tiny person who was almost ready to be born.

Motherhood has not and does not look much like I expected it would. Sure there are the usual bits, laundry that never ends being one but there are other parts I had no idea would become part of our lives. Never did I expect that I’d still be changing nappies at this age, nor that I would have changed so much in the years since my firecracker of a son made his entrance into the world.

SN parents develop the kind of advocacy skills that diplomats really should envy as we ensure that our children are provided with the support, facilities, equipment etc that they require and deserve. We learn to navigate systems and paperwork that seem put in place to make it more difficult to support our loved ones rather than easier, all the while making sure that homework gets done and that our homes don’t completely come apart at the seams (although don’t look too closely at mine!).

Medical mums and dads however, we’re a different breed even amongst SN families.

It’s a bond forged from shared experiences on High Dependency and Intensive Care wards, from sharing the hardest news that any parent can hear, and from hanging on with every fibre of our being as our children fight to live. We are scarred, battle weary, quite frankly we often look a mess and we don’t always get the happy ever after that our beautiful children deserve. And yet, I feel incredibly grateful to be part of this bruised and battered crew of amazing parents.

Motherhood is nothing like I expected. It’s brutal, it’s messy and it can be heart breaking. But seeing my boy achieve things, watching him do things his way and seeing that awesome smile of his is the greatest feeling on Earth. He really is the centre of my world and being his Mum is the greatest achievement of my life.

I am painfully aware that not all my friends still have their children here with them, others still long to be a Mum. Some are mothers to children who they did not give birth to; many more are just starting out on an uncertain journey with their children after hearing their diagnosis for the first time. Women are incredible creatures – how you come to motherhood doesn’t matter one jot, its what you do with it that counts.

Back in 2020 we came the closest we ever have to losing our gorgeous boy. Evidently covid was a bit too common, so my son opted for a dose of complicated pneumonia with a different bacterium instead.

Ironically, the most traumatic experience of our lives turned out to be one of the most positive, as it resulted in several long-standing issues being addressed. His palliative care consultant, who has been caring for him since he was a few weeks old, devised a symptom management plan to allow us and everyone involved in his care a clear plan to keep him in the best health possible.

Fast forward to 2023, and things have been in balance for so many months that we actually started to relax a bit. But like building a delicate sculpture or a house of cards, all it needs is one thing to slip slightly, and it threatens the stability of everything.

Since Brexit, there have been regular medication supply issues with one or more of the Dude’s extensive list of medications which he relies upon.

As strep A cases started to rise rapidly, it became increasingly difficult to obtain some antibiotics for children and you’ve guessed it, one of the medications already in short supply became impossible to source.

This medication is crucial to keep our son’s gut moving; a simple action, but one with enormous impact. Gut dysfunction means lower medication absorption, so his seizures become more difficult to manage. Constipation adds to this, plus causing discomfort (another seizure trigger), delayed stomach emptying leads to bloating and vomiting, leading to increased risk of aspiration and a dangerous cycle starts to develop.

His team have worked with us to try and work round this issue with alternative formulations but to no avail – the inevitably hospital admission due to seizures finally hit.

It has taken several months but we think we have finally found a combination of medications that works for him.

His seizures are back under control again, however the recent issues have left a mark. Our boy has had more hospital admissions in the past 3 months than he has had in the past 2 years; all at least partially the result of this one medicine supply issue.

Most of the public don’t realise how vulnerable children like mine actually are; they see the wheelchairs and other equipment and think they understand, but they don’t see the battles behind the scenes raging to keep our kids stable. For now, we are rebuilding our beautiful, delicate house of cards – and praying that the next time something changes we can keep it from collapsing entirely.

From the age of 3, my boy has been tube fed. From the start we knew we wanted to give him real food blended to go down his tube – we’d learnt quickly that formula feeds didn’t suit him, a major dairy intolerance meant that he had gastrointestinal upset almost constantly even on the most hypoallergenic of feeds.

While his gastro/dietetics team weren’t entirely opposed but weren’t fully behind it either; it took a lot of persuading, cajoling, form filling and agreements that we were doing this against the hospital’s position before they accepted it.

You must remember that this was almost a decade ago and it was definitely seen as divergent from the accepted norm, there weren’t many families doing blended and even fewer openly admitted it!

Sam is thriving on blended. Not only does he gain weight well, but he doesn’t have a lot of the issues of other tubies (reflux, bowel issues, tissue problems, etc). Over the years, the scientist in me couldn’t resist researching links between seizures and food; dairy, soy, gluten and corn can cause an increase in seizures in sensitive individuals so we removed these to see what happened.

His seizures improved. Enormously.

His diet is phenomenal as there are very few things we don’t blend and we’ve been able to remove foods that he can’t tolerate easily.

We do add in a powdered multivitamin, a common issue for children on certain medications is that they absorb lower levels of some vitamins from their food… giving them additional support here just keeps everything as it should be.

I’ll be blunt, it isn’t suitable for every child. You can’t give blended food down a jejostomy for example. Our son’s issues were never around food tolerance or absorption.

It isn’t an easy option but no harder than making meals for any child, and the positive impact on the parents/carers of giving them back the ability to prepare meals and feed their child is enormous.

In 8+ years we haven’t had a single tube blockage nor illness due to blending; medications however have caused numerous tube issues.

Where once it was seen as a militant act to give a child real food through a feeding tube, it is now becoming much more accepted; if families want to try a blended diet and there is no medical reason not to then surely, they deserve the option to try?

Uuugh. It hasn’t happened often in recent years (the wheelchair/oxygen cylinder/suction machine kind of give it away) however it was a phrase we heard a lot when he was little. How exactly are you supposed to look with life-threatening epilepsy might I ask? Even now photos can be really deceptive. 

The photo on this post is an old one, but a favourite – he was so, so proud of himself for managing to sit unsupported next to his Dad. To look at him here, he looks like any other happy healthy kid.  In truth, this, like all photos, is a snapshot in time – a moment when he found his balance perfectly.

It lasted a matter of seconds, you can’t see his Dad’s hand carefully placed behind him ready to catch him as he lost that balance, seizures rapidly took over and he slept much of the afternoon away, protected by our friend’s wonderful dog (who along with us didn’t leave his side).

Then there’s the other extreme

. Those who see my boy and fail to see the clever, cheeky boy who can communicate, is a demon at boardgames, loves swimming and LEGO… instead focusing on the issues.

They see a disabled child, and miss all that he is and is capable of. It is entirely their loss as he won’t give them the time of day… he has a slightly evil habit of kicking people who talk over him in the shins then looking as innocent as possible. Can’t say I blame him. Assumptions about his abilities are a plague my son faces almost daily but he will never face them from those who love him

The only thing that will limit him is his imagination.

His most loved Aunty nicknamed him Spaceman (he loves stories about space, rockets and flying amongst the stars), his teachers continue to push him to achieve things he currently finds difficult and we will continue to cheer him on.

One of the greatest disservices anyone can do to another person is to write them off before they’ve even had the chance to try, able bodied or otherwise. Children with disabilities have enormous potential just like all others, they just need someone who believes in them and who will give them the confidence to spread their wings and learn to fly.