Since the Dude was tiny he’s struggled to cope with hot weather. We dreaded summer during his early years, it was a never-ending battle to try and keep him comfortable and not over-heating… a guaranteed seizure trigger.

The poor child was in and out of seizure constantly. He loathed it, we loathed it. It was miserable.

During the summer of 2014, when he was 3, we were on holiday with my parents.

Those who remember that year will remember that although it wasn’t record breaking as such it WAS consistently very warm all summer.

Sam was lethargic, seizures were off the scale and we’d exhausted all the usual suggestions for keeping the little chap cool. In desperation, an online order to Argos was made for a small, toddler-size paddling pool.

Knowing how much this child HATED being in anything but the warmest of waters, we were not overly optimistic that he’d tolerate it, but as I say we were desperate.

It was a game changer. He spent that summer happily lying in his pool, splashing about, keeping cool. His seizures calmed down, he slept better, he was happier. We have never been without a pool since.

This July, the UK is due to turn into a hot box for a few days as temperatures soar to over 30 ֯C – today has hit 38 ֯C. I am currently typing this at 22.14, and its STILL 27 ֯C out there.

I won’t lie; while I like the weather hot and sunny I was more than a little concerned about how my boy would cope.

Last year, as he’s now substantially bigger than he was, we had to upgrade his old inflatable pool to a larger one and its been up and ready for the last couple of days in preparation for this heatwave.

We still use other methods to tackle the – he has a fan in his room, we keep his curtains firmly closed during the day, and when its as hot as it is currently a bowl of ice/water in front of his fan works wonders at cooling the air.

But just like when he was teeny, the thing that reliably helps him cope in this weather is getting in a pool.

It brings his core temperature down, he gets to play and splash about, and best of all he uses his limbs. Doesn’t sound much does it, but for him its huge.

He builds strength playing in the water, learns how to control his arms/legs. Its physio, by the backdoor, and I strongly approve!

The cost of caring

There appears to be a bit of a misconception amongst our local community (and indeed further afield.)

You see, recently I saw uproar on social media about the recent cost of living grant issued to many homes across the UK. The money was intended to help those with financial difficulties cope with the sudden rise in costs of UK living.

The media did not help with its phrasing of headlines clearly designed to cause anger and provoke a reaction.

People took to the keyboard slating all recipients as “lazy”, “spongers” “scroungers” and well, other things that wouldn’t be very nice for me to type here. Much of it was directed towards people in a similar position to us.

A position I never expected to find ourselves in.

I watched as people defended why they needed that money. I watch people enraged because they work long hours everyday and “get nothing”. 

I saw some really, really unpleasant things being said.

There is a definite attitude that people with disabilities are just given “free money” or “free housing” or “free stuff”.

I recall a post a long while ago where someone outright suggested that people with autism are given free toys and everything they need.

So I suppose my question is – where can I sign up for this free lifelong money please? It sounds wonderful.

Jokes aside, financially things are tougher than ever for so many of us.

We recently had problems submitting a new gas meter reading and our “smart” meter had stopped working. We got it replaced to be told we owe £79 000! Imagine our surprise! Thankfully after a few weeks of back and forth emails and calls we were informed we actually only owe £797. (Only! She says, as if she has more than £2.70 in her bank account right now.)

You see families like ours have much higher operating costs! A height adjustable hospital bed, a feeding pump, suction machine, ceiling mounted hoists, constant kettle boiling for sterile water for tube feeds, the extra washing, the extra showers, the stoma site care and management.

I could go on and on. Everything needs charging, or some sort of regular maintenance that requires some form of energy.

Hospital stays. This requires so much more money than you would expect! 

Days out. Fuelling a wheelchair van that has to transport a big heavy wheelchair and medical equipment everywhere.

I think though, unless you live our lives, you can never truly understand the picture I am trying to paint here.

Families are scared. How will they heat their house this winter? There are people choosing between food and heating. 

Of everyone I know in a similar situation, I think generally they would all tell you the same thing.

They would tell you that working full time is a privilege. They would tell you how much they miss work. The productivity, the distraction, the social aspect, the money, and so many other things.

They’d tell you that they miss being able to leave the house with purse, phone and keys. 

That they miss every phonecall causing that sick feeling in their stomach. “Oh gosh, not another ambulance is it? Is she okay?”

They miss being able book time away at places without researching for months about adaptations, grants, and whether or not they can afford it let alone manage without the care and respite they qualify for.

One of the biggest lessons I have learned in the last 8 years was not to judge.

I remember being a full time employee in an office.

I cringe telling this story… but I remember one day having a bit of a rant and outburst about the amount of charity fundraising we constantly did. It was always sponsored run here, bake sale there, non uniform day this, mountain hike that.

To my defense, at the time I was pregnant and saving every penny to pay towards a deposit on our first house. I had done 60 hour weeks and the exhaustion was getting the better of me.

So what I am saying is – I get it.

I understand fully why people are angry. 

I realise now though that their anger is very much misplaced.

That £326 doesn’t even go half way to paying the energy bill that just shot up. I can’t just go and do some overtime. I can’t go and get another job, much as I would love to.

I tried working a few hours a week a few years ago. It was a disaster.

I would regularly come in absolutely exhausted with carer burnout from lack of sleep and constant medical intervention etc. Or I would be unreliable due to my daughter’s constant chest infections and seizures.

It caused so much stress.

Pay day would come. I would be excited to be earning my own money again to find that my earnings meant less universal credit payment.

I realised that I was basically working for free whilst everyone else around me got paid… and yet none of them were providing 24/7 care to a very medically complex dependant.

In addition to this, since the pandemic, charities have been impacted massively financially.

Lack of funding can mean that eligibility criteria becomes much harder for people to meet and thus more people are unable to access grants that previously they had qualified for.

At night I worry constantly. About society’s judgment of us. About what I will leave when I am gone. About money we will never have.

I know in my heart that carers contribute a tremendous amount to our community. We save our government millions every year.

We don’t get sick days, we don’t get annual leave. We don’t get an appraisal and often suffer with isolation, lack of self worth, and also worse health. We don’t get a nice pension plan. We do what we do through necessity and also love.

We don’t live in free big, fancy houses.

Many of us have had to sell our unadaptable homes that we had worked so hard for.

Many of us have had to campaign relentlessly to get the adaptations to our homes that we need to safely care for children. No one is just “given” anything.

Many live in unsuitable, cramped housing, unable even to get a wheelchair through the door.

Services are constantly under threat for us.

We worry constantly about respite funding, transport and education funding, NHS funding and so much more.

It’s mentally exhausting worrying the amount we do. We feel constantly like we need to defend anything we get, no matter how little it is.

So if you’re reading this but not in our position, I really would implore you to have a little more and compassion and actually to become an ally of ours. We are not the enemy.

Do not believe the headlines when they’re out to get clicks and comments. Think about what we go through each day and celebrate actually how beautiful and precious life truly is.

The irony of all of this is that actually now I would be a better employee than ever. My admin skills are second to none, I am more patient than ever, I am more direct and efficient, I am skilled in many areas.

I am so much to my daughter. I can do medical procedures and interventions I didn’t know existed, and never thought I would master.

Be kind to yourself. You are doing absolutely brilliantly. What the outer world thinks is of no consequence. You know your own truth and importance.

I know that there will people who disagree entirely with everything I have written here. But know that I do see both sides.

And know that until you walk a mile in our shoes that you can never truly comprehend how our lives look.

How to cope in the heat with children with additional needs

“Phew! Wot A Scorcher!” screams the newspaper headlines as the temperature rises to new record levels once again, but for families with children with additional needs, the screams are all too real as they and their children struggle to cope with the heat.

So, here’s some links to places that families of children with additional needs can go to get some help and advice as we all try to support our children…

Mummy Est.2014
This is a great website for families of children with additional needs, and a recent blog post is packed with helpful tips to cope with the heat.

Heatwave with kids: Ways to handle a heatwave

Red Cross

Always a useful resource for health and safety tips, the Red Cross website has a great article with seven things to remember in a heatwave.

Heatwave UK: Top tips for keeping cool


BBC News

The Disability area of the BBC News website is always worth a look, and it currently has a really helpful article about cooling solutions for disabled people of any age, including children.

Disability and the heatwave: Cooling solutions and disability as weather alert goes red

The SEN Resources Blog

Another useful website for families and carers to explore anyway, but the SEN Resources Blog also has this useful article to help keep our children cool during the heatwave.

How To Keep Kids Cool During The Heatwave


And finally… here’s some resources from Twinkl to help to explain about the heatwave to your additional needs children…


Lots of resources including visuals to help you to explain about the heatwave to your child


I hope this provides you with a head start as you look to keep your child with additional needs safe and cool during the heatwave, and as you help them to understand more about the heatwave too.

Keep safe!

Thank you: 5 people I’m grateful for

Sometimes it’s very easy for us parent carers to get caught up in the negatives of dealing with the various systems around us.

The fight for limited resources, constantly chasing up reports, equipment or appointments and even having our child’s needs denied can be disheartening and exhausting.

It can feel like we are demanding the moon on a stick merely by asking for what our child is legally entitled to. 

It can be like a big dark cloud over us.

But the cloud sometimes masks the positive moments when someone does connect with us, provides us with exactly what we require or ‘gets’ our child and their needs. 

So I’d like to take a moment to thank the people in our lives for whom I’m thankful:

  1. Thank you to the paediatrician who, in a recent appointment, asked me what I’d like to be called (‘I can’t just call you mum the whole time’), took time to speak to my son in a calm and non-rushed way, and responded promptly to all agreed actions.

  2. Thank you to the speech and language therapist who enjoys working with my son. Hearing the two of them laughing away during their sessions warms my heart. Her advice and expertise, particularly in the early years, helped me better understand the processing difficulties he experienced and the need to allow him time to respond.

  3. Thank you to the occupational therapist who taught me about proprioception (body awareness or sense of our body) and how important this is for children with cerebral palsy and other sensory needs.  This helped me understand how discombobulating it can be for my son when things suddenly appear in his personal space. I also appreciate her inventiveness when we need to troubleshoot a particular challenge that arises in family life. 

  4. Thank you to the teacher who took the time to check in on my son and us as a family while we were recently self-isolating at home with covid.

  5. Thank you to our carer who knows how to support each of my children recognising their individual needs.  Those people who realise that it can be invasive to have someone in your home and adjust their behaviour accordingly make life so much easier.

These things are often small and don’t cost extra money. 

The things I’m grateful for involve people being sensitive and empathic, able to relate as a human being and doing their job properly. Small, yes, but the rewards are significant to us and our family.

There is a free download for education, health and social care professionals on supporting parent carer wellbeing here.

We might not always notice these things in our everyday life but by stopping and reflecting once in a while we see there are many things to be grateful for. And this can have a positive effect on our emotional wellbeing.

What are you thankful for?

You can find more parent carer wellbeing tips at www.affinityhub.uk.

End of an Era

After the chaos of the last two years (yes covid, I mean you) it was lovely to actually sit IN THE SAME ROOM as the Dudes form teacher and teacher for the visually impaired (theres a mouthful if ever there was one), and go through the progress he’s made this last year in preparation for him moving up to high school in September.

These ladies have been with my boy for a long time – his VI teacher for example has supported him since he was 3 years old, so moving on and leaving her behind is going to be a wrench.

Together with his teacher, teaching assistants (there have been many) and other lovely staff who have worked with him since he started at this school, they have not left a single stone unturned in their efforts to find what worked best for him.

I still remember his first proper session with his VI teacher in early years.

She came prepared with a massive cardboard box, all blacked out inside to really heighten the contrast for him; she had a range of toys from cheerleaders pompoms in tinsel, light up toys, brightly coloured wiggly things… she had a fight on her hands as all the children wanted to play!

A chance conversation with her highlighted my boys love of LEGO; at his next visit from her she brought light up LEGO blocks, to see him suddenly ‘switch on’ and use his vision purposefully was nothing short of incredible.

It is beyond nerve-wracking to leave behind these amazing people who have loved my son as if he was one of their own, and who have given him so much over the last 8 years.

Currently he’s one of the bigger kids, in September he’s going to be one of the little ones again.

It is very clear to everyone that our boy is ready to move up to high school but it really does feel like the end of an era.

As we were finishing, his VI teacher smiled and said her go-to memory to show how far our boy has come is from her first meeting with him; ‘when I first met him, it took 5 minutes for him to be able to focus on an object. When I assessed him recently, it took 40 seconds’.

Proud? You’d better believe it.

Dry-eyed? Not a chance.

I can’t promise it’ll be easy, but it will be worth it

Back in June, we had Carers Week; for me and Mr V, and millions of others, every week is carers week.

No parent chooses for their child to be born with a life-limiting condition or disabilities.

Likewise, no parent would ever choose for their child to develop these as a result of illness, accident or another cruel twist of fate.

But it happens.

And when it does you find yourself in a world of medical terminology, testing, grief and often fear for the future.

But there is also hope.

This isn’t a club anyone plans on joining, but once you’re in, you’re a life-long member. The other members are pretty awesome and will show you that being a carer is not only an incredibly worthwhile role but comes with a huge amount of positives that help to balance out the difficult bits.

True, it is exhausting (mentally, physically and emotionally), and will take a level of courage and strength on your part that you never thought you had.

But you will find it, and then some.

Being a parent-carer will open your eyes to a different world, one where no achievement is considered minor or insignificant. Every bit of progress is celebrated, every individual is valued and loved for who they are not what they can or can’t do.

It will teach you what it means to love unconditionally.

You will experience the kind of highs that make you feel like you’re soaring, and while the lows will take you deeper into the abyss than you imagined possible there will always be others there ready to sit with you in the dark and to help you climb back up again when you’re ready.

Every time your child does something that others take for granted you will want to punch the air with pride and joy because you KNOW how hard won that victory is.

You will learn greater empathy, how to advocate for those who need you, and you will become your loved ones greatest champion because they are yours.

The Dude is blessed to have a huge number of people in his corner, who love, support, encourage and cheer for him… but I count me and his Dad as the lucky ones.

Because we were blessed with this amazing, bright, gentle and happy little boy.

To those just starting on this journey as carers I can’t promise it’ll be easy. But I absolutely promise that it will be worth it.