Special Needs Families: Elf on the Shelf

Now “The Elf of the shelf: A Christmas Tradition” is a 2005 children’s picture book written by Carol Aebersold and her daughter.

The Christmas themed story tells of an elf that is sent to keep an eye on children on the run up to Christmas day after which he returns to notify Santa of who has been naughty and nice.

Now like anything with a Christmas label this has grown into a phenomenon and you all will have all seen across social media your friend’s antics of placing their elf up to mischief for their children to find each morning.

I want to tell you how this little red stuffed elf with his big ears and cute cheeky expression has changed the last two Christmas’ in our house, how he has brought with him the actual “magic” of Christmas.

My son has autism and apart from the presents, to him, Christmas was just another day, so much so that up until he was 8 he would get up Christmas morning and get back in his bed with the TV or iPad as if a regular day until we reminded him that Santa may have been.

Last year Cameron asked me if I had heard of elf on the shelf and if I thought he would visit our house as his friends had been saying theirs had arrived.

Cue the mad dash online to try and source one of our own – thank the lord for Amazon Prime.

I decided on the catchy name “Tinsel McGingle” and I wrote up a letter to Cameron apologising for his late arrival but that the journey from the North Pole had been tricky and he got lost. He was so happy at Tinsels arrival and the treats he had brought with him, he made him a pride of place on his bedroom shelf.

Let the shenanigans begin!

We had the elf fishing from the fish tank, snow angels in flour, climbing the Christmas tree but Cameron’s favourite was the morning he found the elf pooping chocolate drops.

It was like I had a different child, my son was now conversing with me and expressing how happy he was and how he was wondering about things and he went to school and was engaging with other children more whilst they swapped stories about who’s elf had done what.

My child that struggled in group situations had become this social butterfly and had found a common ground with the other children that made him feel like he belonged.

He spoke about Tinsel often throughout the year, reminiscing about what he had done and from November this year he had me create a countdown to December 1st for Tinsels annual arrival.

“Tinsel – YOU’RE BACK, I really did miss you!”

As Cameron, has grown this year and understands more, he now has a deeper understanding of care and has been asking me to leave Tinsel out some food and drink of an evening as he knows that he must get hungry.

“Goodnight Tinsel – see you in the morning, I love you!!” – Cameron

“Thank you, Tinsel for helping my son to grow!!” – Me

First Christmas

I have gone to the toy shops in their summer sales and stocked up on different things for the children of the family.

I will start looking now for the Christmas food stock that is coming in and stock up on Christmas chocolates and crisps. I will start to look out for coupons and vouchers for real Christmas trees.

This year however is the first Christmas I am feeling a bit stumped.

Although last year was my daughters first Christmas, we still weren’t sure the extent of her global development delay and her other disabilities.

She was also only 4 months old and so baby toys were brought in the anticipation of her playing with them.

This year however, I am more aware that she isn’t strong, more aware that she is delayed and more aware of her disabilities.

I went to the preschool/toddler toys in my local toy superstore and just looked. I walked over and picked up a few items, a walker, an activity table and just placed them back onto the shelves.

I decided to look at the items aimed at the children slightly younger than my daughter. Again, picking things up and then changing my mind.

I went back to the car and sat and just cried.

I know it sounds ridiculous, crying because I couldn’t find a toy for my daughter but actually it’s times like this that hit me the hardest.

It is times like this that remind me just how delayed my daughter is. It is times like this that make me realise how much I now just take as normal.

It is times like this that I mourn slightly, I mourn for the easy life my daughter could have had, and I mourn for the life I had hoped for her.

I cry as I realise people will start asking what to get the kids and this trip will come back into my thoughts as I cry and ask for vouchers, for when she is stronger.

We still have a stack of vouchers from her birthday that we don’t know what to spend them on.

This Christmas morning I will be grateful for the progression she has made, I will be grateful that she has proved the doctors and physiotherapists wrong, however I will also have that tang of sadness as I will think about the future, how many more Christmas’ will my daughter have, how far will her progress be next year.

This Christmas is my first Christmas as a physically disabled child’s mum and it is going to be hard to get through.

I hope future Christmas’ aren’t so emotional.

Fairytale of a Special Needs Christmas

The eldest said to me, won’t eat another thing,

And then he threw a dance,

The same ol’ meltdown tune,

I turned my face away,

And dreamed about school.


Well I ain’t the lucky one,

Couldn’t get the number one,

I’ve got a headache,

‘Cos Smyths was like a zoo,

So happy Christmas

I should’ve shopped online,

I can see a calmer time,

When all my shopping’s done.


They’ve got lists long as arms,

They think mother spins gold,

But the credit cards declined it’s too late and too cold,

When they first made their lists,

On a cold winters day,

They promised me

No changes were waiting for me.


They are handsome

Sometimes petty,

Kings of Lego city,

When mama finished cleaning

They dirtied some more,

Crosby was ah’ dreaming,

While this mammy was singing

She kissed their wee foreheads

Then drank through the night.


The boys who have ADHD tire,

While waiting, for the Sleigh

And this mammy’s crying out

For Christmas Day


Ye are pups

Ye are scuts

Ye’re full up on junk

Playing there with old toys, hidin’ stuff in the trunk,

Ye rugrats, ye maggots

Can’t ye see mums run ragged

Happy Christmas me arse

I hope that my wine lasts


You boys are driving us mad

But we love ye, now go and play

And the bells are ringing out

For Christmas Day.


I could have been an aunt,

Well so could anyone,

Those boys came outta me,

I’ve scars to prove it.

Ah god bless them babe,

Can’t believe their our very own,

Cost us a fortune but

I’ve build my dreams around them


You boys are energetic and fun,

We love ye, in every way

And you lads are making this

An Awesome Day.

Tired and Grumpy, and that’s just Mummy

Allow me to explain… unlike many parents of medically interesting little people, as a general rule J and I aren’t overly sleep-deprived.

Sam likes his sleep. Granted, a lot of this is because of the relentless assault of the seizures which completely wear him out, poor little chap.

We also found out a week ago from Sam’s sleep study that as his VNS fires, it causes his airways to tighten just enough to cause a drop in his airflow.

This in turn means a drop in his blood oxygen levels, increasing his heart rate, and rousing him from sleep. And this happens every time the VNS goes off. Which, even without seizures, is every 3 minutes.

Can you imagine being woken up every 3 minutes by someone giving you a little electric shock?

When Sam’s respiratory consultant gave us those results I felt in equal measure heartbroken and angry. After all, we’ve done this to him.

We gave the Dr’s permission to give him the implant, we fought tooth and nail for 4 years to get him the chance to try it. And it’s WORKING.

Sam’s seizures are at a better level now than they have been in years thanks to the VNS, so once again realising that we’ve improved one issue only to give him a different one pretty much tore my heart out.

Then there was the white hot anger in the pit of the stomach at just how damn unfair this all is. He is only a 6 year old little boy. He does not deserve ANY OF THIS.

I wanted to punch someone or something, to have something to blame for the injustice metered out to my beautiful, innocent child.

But no-one is to blame for any of this. It just is.

This isn’t an uncommon issue for any parent. Sort one problem out, another takes its place.

Fortunately for us (and Sam especially), all that’s probably needed here is a tweak to the VNS settings and then a repeat sleep study to see if we can reduce the issue for him.

But for now he is incredibly tired, all the time, because he can never get into the deep, restorative sleep that he needs to recover from the day, learn and develop.

So if he wants to sleep in bed with us, then that is absolutely fine by me… if it makes him feel safe and protected then so be it.

It just means Mummy might be a bit more tired and grumpy than usual the next day…

Christmas as a Special needs Family

All over the world people are scurrying around at every spare moment they have to decorate their trees, buy their presents, and get it all wrapped.

I feel like I am still finding my feet when it comes to the whole Christmas thing as a mum.

As a child Christmas is quite literally one of the most exciting things ever.

Each year you become more aware of the traditions and magic and immerse yourself in a world of chocolates, parties and presents with the ones who matter most.

When I knew I was going to be a mum one of the first things I got excited about was how Christmases were about to change forever.

As an adult, for me at least… Christmas can be a bit expensive and inconvenient.

I love getting to see my family, eating the tasty food, and attending various social events; I even love the pretty decorations and cosy nights in.

Having a child re-ignites that love of Christmas and evokes a deep nostalgia from your own childhood.

I am still determined that one she day agrees to watch a feature length Disney film with me and all of the Christmas classics!

For now I will continue to accept the same few episodes of Dora and Friends. The girl knows what she likes.

Accessibility to Christmas events remains an issue and as time goes on I am becoming more vocal in ensuring that any activities for children at Christmas are wheelchair accessible and that staff involved are aware of additional needs.

I still find it a shame that a lot of the Santa’s grottos involve presents that are food when my child is tube fed… though this year we do actually have a chocolate advent calendar just so that she can have a little taste on the tip of her tongue.

Christmas markets aren’t easily navigated with a wheelchair and stressed out shoppers have little patience for letting you through busy aisles.

At this time, internet shopping is my friend as is well timing our trips out to avoid crowds!

This year will be our daughters’ 4th Christmas.

The more I think about Christmas the more I see what an abstract concept it must be for a child to understand; especially when that child is severely neurologically impaired.

I am not sure she knows who father Christmas is… though she has been known to pull on his beard on occasion. She certainly doesn’t understand the story of Jesus’ birth and who he was.

Or maybe she does? So much of this is a guessing game for all of us.

She is an incredibly bright little girl and very aware of what is going on around her, but sometimes her being non verbal leaves me wondering what is going on in her head.

I imagine there are a lot of parents out there like me who wonder how Christmas will be in the future. This year we are very much still on “baby” toys.

I made it clear in some of my posts last year that if the child enjoys a toy it doesn’t matter at all what age or gender it is intended for. If it makes her happy, then that’s all I care about.

I do wonder how things will be 5 years from now, 10 years from now, and so on. I wonder what kind of presents we will be buying?

One of the hardest parts about shopping for presents is seeing all of the “developmentally age appropriate” toys for her age group.

I hate seeing scooters, or dolls houses… things that require you to be physically able and to also have fine motor skills.

I am so grateful that she gravitates to electronic toys with large buttons. It’s almost as if she knows her own limitations and knows exactly what she can access and enjoy.

It makes me so proud. But it also makes me worry for future enjoyment.

My favourite thing about my little girl is when I imagine what her Christmas list would be.

If we looked at everything that brings her joy and wrote it into a list… none of those things are material possessions, and in that I think there is a big life lesson.

Number one on the list would be being around all of her favourite people (family and close friends), after that would be very physical interaction such as being swung and thrown around by her daddy.

(It makes me cringe horribly and I know from a physio perspective it is far from ideal… but when you see that absolute delight and hear those squeals of excitement… you’d want to swing her around too!).

After that would be a trip out somewhere, even just to the shops to walk around looking at things. Watching videos, listening to music. These are all what she would have on her list.

Toys always factor in at some stage, but she really does want great human interaction, patience, fun, and kindness. Which is essentially what most of us want I think.

Sometimes I wish she was that child begging me to buy her a new toy in the shop, or that she were able to write up a comprehensive list of all of the latest trendy toys she wants… but in reality, I couldn’t be more proud of her attitude towards life and her thirst for sensory entertainment.

I know that as time goes on my approach to the present buying will have to be more inventive and that I need to try and encourage her to experience as many different things as possible, but right now being led by her seems to be working well for us.

For example we recently tried going to the cinema. We had to leave with in about 15 minutes as she got so distressed.

I was thinking that this would be an amazing hobby as all you need to do is be in your wheelchair and watch and enjoy. But maybe it was the wrong film, the wrong day, or just too soon, I don’t know.

As I left a group of little girls walked beside a lady who said “Are you excited for the cinema, girls?” to which they joyously responded “yeahh!!” with woops and cheers.

I got in the car, slumped back in my seat and had a good long cry at how different our world can be and some of the challenges we face together.

But then we went home, cuddled up on the sofa, and watched the pirate episode of Dora for probably the 200th time. And it was awesome.

Have an amazing Christmas everyone.

Also a shout out to some of my closer friends who have been in hospital now for a good few months, I hope to whatever is out there that you are all out for Christmas.

Christmas with Autism

Christmas time, a season which makes my autistic son so uncomfortable.

My son cannot handle the loud songs, he can’t handle the crowds that happen when you go anywhere near a shop.

My son can’t handle the lights and the sparkling displays. Our home at Christmas has to be carefully decorated.

The decorations are all made from material, there are no sparkly tinsel boas in sight, there are fairy lights on the tree however these do not flash, they are just on solidly, and in fact 90% of the time they aren’t even on.

My son can’t handle the fact that the routines change so much at Christmas time.

School is out of routine as he rehearses for the school Christmas play, the classroom is changed to accommodate a Christmas tree.

At home things start to change slowly, the shows on TV start to change to be more festive, the routine starts to change at the weekend as we start to visit Santa grottos, that have been carefully selected, ones where the queues are minimal and we can book a time slot so that the crowds aren’t too much.

Ones where the music is not blaring out as you walk around to see the big man.

Christmas day is hard in itself, Christmas presents given just because it’s Christmas, breakfast is at a slightly different time, the whole family comes round to see us on one day, and dinner isn’t food we eat generally.

The bedtime routine is changed, maybe he will go to bed slightly later, maybe he won’t be able to watch as many bedtime stories as he would usually.

Just the thought of the new toys and trying to find the perfect place for them in his room fills me with dread as this causes real issues.

The emotions around Christmas are hard enough for children without autism to handle. The excitement of the whole day.

Sometimes the disappointment as you realise the present you had your heart set on hasn’t been unwrapped.  So I can only imagine what my son is feeling.

I have been trying to prepare him for Christmas already, we are already discussing what Christmas day will consist of.

We have already started to warn him that the bedtime routine may not be exactly what he wants.

We will of course try to stick to his timetable and routine, however with 3 other children this may not go to plan.

I love Christmas and everything that goes with it, however I know that Christmas isn’t my son’s  favourite time of year.

I know that actually my son although is so excited about Christmas deep down he is worried and anxious about all the changes.

Five Things I’ve learned about Epilepsy since my Son’s Diagnosis

In my mind, they were convulsive and very obvious-  what’s commonly known as tonic clonic seizures, or previously as grand mal seizures.

I wasn’t aware that seizures could be subtle or easily missed – staring into space for long periods of time or repetitive movements like lip smacking or hand wringing, for example.

My son, Hugh, had his first seizure that we are aware of at 9 months old, but it took a further 4 months and repeated episodes before they were diagnosed as epilepsy.

His seizures are incredibly subtle and cause him to stop breathing for minutes at a time.

Since then, he’s also developed seizures where his whole body stiffens (tonic seizures), seizures where he goes completely limp and unresponsive (atonic seizures), ones where he grinds his teeth and makes repetitive movements (focal seizures) and some where he stares into space without really seeing anything (absence seizures).

For a comprehensive list of seizure types and how to respond if you see someone having one, click here.

2. Diagnosis isn’t always straightforward

An electroencepholagram (EEG) detects abnormalities in brainwaves and is just one tool that can be used to diagnose epilepsy.

Small sensors, called electrodes are stuck to the head using glue or tape and record electrical signals from the brain onto a computer.

Hugh had 4 normal EEGs before finally being diagnosed with epilepsy after his 5th EEG.

EEGs can only measure electrical activity in the brain at the time the test is being carried out and whilst some types of epilepsy may present with irregular brainwaves all the time, other people only show unusual electrical activity at the time that the seizure is happening.

During the first 4 EEGs Hugh had, he didn’t have any seizures so the doctors decided to give him an ‘ambulatory EEG’ whereby Hugh came home from hospital with the electrodes still attached to his head and a small recording device with a button we should press should we notice any unusual behaviour that we suspected might be a seizure.

It wasn’t easy to keep his little hands from pulling at the wires attached to the electrodes on his head.

Manoeuvring a baby, a head full of wires and a little recording box from cot to pushchair to car seat etc wasn’t much fun either.

However, this time, the EEG detected a seizure and so a diagnosis of epilepsy was made when he was 13 months old.

MRIs and blood tests can also be carried out when diagnosing epilepsy, but often detailed descriptions of the seizures are the most helpful tool in reaching a diagnosis.

3. The importance of record keeping and taking videos

Keeping a detailed seizure diary is really useful when attempting to diagnose epilepsy and/or find the correct treatment.

I experimented with a number of different ways of recording seizure activity, including, at one point a pretty comprehensive spreadsheet that created graphs! There are even apps available now.

Essentially the key things you need to note is the when, what happened and how long for.

A good description of the actual seizure really helps. Things you could look for are:

  • level of consciousness – can they hear you/respond to you?
  • unusual eye movements – are their eyes rolling/blinking rapidly/looking in one direction?
  • unusual muscle tone – are they more floppy or stiff than usual, is this in one limb or all of them?
  • Is their breathing affected – note changes in breathing pattern or any blue tinges around the lips.

The most useful thing I have found though is to take a video. With smart phones now, it is incredibly easy to do.

The thought of video-ing my child while he was having a seizure really troubled me, it goes against your nature to video your child in such a distressing situation.

However, that first video was essential in ensuring the right diagnosis and treatment for Hugh.

Interestingly, although I thought I’d recalled all the essential points about the seizures, the video picked up on nuances that I hadn’t noticed.

I regularly video his seizures now and show them to his neurologist as well as use them to train staff working with him on what to look out for.

4. There is not always a simple treatment option

Naïvely, I assumed that once we had a diagnosis of epilepsy that the hard part was over and that treating it would be simple.

Thankfully, for the majority of people, finding the right anti-epileptic drugs is reasonably straightforward, and whilst they won’t cure epilepsy, they can work to control the seizures.

However, some 30% of people with epilepsy can’t find the right drug or combination of drugs to control their seizures – this is known as medically intractable epilepsy.

Hugh tried 7 different anti-epileptic drugs, none of which managed to get his seizures under control.

The side effects of the drugs were, in some cases, as horrible as the seizures and the whole process of starting a drug, slowly increasing it to the required level, discovering it wasn’t working, slowly weaning him back off it whilst simultaneously introducing another drug was painstaking and soul destroying.

Anti-epileptic drugs aren’t the only epilepsy treatment available and Hugh has tried the ketogenic diet with some success and recently had a vagal nerve stimulator (VNS) fitted.

You can find out about the ketogenic diet here and the vagal nerve stimulator here.

5. Epilepsy doesn’t have control your life… but you may need to work at that

A diagnosis of epilepsy can be devastating, particularly if it is hard to find the right treatment to control the seizures.

I’ll be honest, epilepsy has had a huge impact on our lives and prevents us from doing many things.

Hugh’s seizures are such that we need to be able to get medical help very quickly, so trips abroad can’t happen (in case he had a seizure on the boat/plane) and many an event has been cancelled at short notice due to an increase in seizures.

There was a time when we rarely left the house, his seizures were so frequent and severe.   However, we work hard to try and enjoy life as much as possible; we’ve learnt to live in the moment.

If that means one parent stays home (or in hospital) with Hugh while the other takes our elder son out, then that’s what happens.

If Hugh is having a good spell then we make the most of it, we go out and enjoy life as much as we can.  Hugh’s epilepsy might influence our decisions, but we work hard to ensure it doesn’t control us.

It’s not always easy and our expectations have had to change, but I’m determined that epilepsy won’t ruin our lives.

Hugh Murphy is 7 years old and has medically intractable, life threatening epilepsy. He regularly needs to be resuscitated during his seizures.

e is currently taking 2 anti-epileptics daily and uses a vagal nerve stimulator. His epilepsy is still not controlled but there have been recent improvements following the VNS implant.

His mum Emma Murphy blogs at www.LittleMamaMurphy.co.uk and you can follow Hugh’s story on facebook.


I remember vividly when my first son was born I pictured his first day of school, our first trip to the beach, our first Christmas, our family holidays…

I dreamt of all the wonderful places I would bring him and imagined the fun we would have.

When my second son was born I had all the same milestones floating around in my head.

By the time my third son came along, my reality had changed drastically, all I pictured for my third son was his health. Milestones seemed unimportant.

With Ethan we have gone through the some of the usual milestones but we’ve also gone through ‘other’ milestones which we could have never seen coming.

These ‘other’ milestones, we learned after Ethan’s diagnosis of Hunter syndrome were all ‘normal’ and in line with what the syndrome does to those who have it.

How clinical and cold does that sound, eh?

We heard that line an awful lot throughout the years especially when we felt something was wrong with Ethan or if we disagreed with the doctors and specialist.

It just became background noise to us, or perhaps that is what it had to be for us to have the strength to carry on; knowing Ethan and his own milestones would never match any dreams we could have ever dreamed of for him.

And that is sad; it can be debilitating at times. Sometimes it feels like we are grieving even though our son is very much still here. And that feeling of grief can lead to guilt.

Parenting is never guilt free for anyone.

Ethan brought us through some amazing milestones which we never thought we would ever see Ethan do or enjoy:

  • going to Disneyland twice
  • winning a child of courage award, visiting a pilot in the cockpit just before we took off, making a documentary, taking a spin on a helicopter (just because Ethan is Ethan)
  • watching him run, laugh and talk
  • listening to him sing
  • watching him dance like no one was watching and then telling those who stared to ‘Fug off’ (I’m sure you can guess what, “fug”, meant!)

Then there have been some very different milestones also; some were necessary for Ethan to get the most out of life, others were heartbreaking:

  • his first hearing test
  • getting his first set of hearing aids
  • his first set of AFOs, his first handmade shoes
  • his first set of hand braces
  • his first IEP meeting
  • his first physio session
  • his first OT session
  • his first speech and language session

Then, his first:

  • lung test
  • MRI
  • operation
  • Botox injection
  • five minute walk test
  • Echocardiogram
  • carpal tunnel test – plus the procedure to correct it
  • scans
  • clinical photographs
  • his first hospital stay
  • his first wheelchair
  • his first swallow test
  • his first peg feed…

No one could have seen all those milestones fifteen years ago.

On Wednesday we face yet another milestone. This one is one that we have struggled with over the past few months especially.

We are going to a place where the words ‘end of life’ care are common place.

We are going to visit and stay in a children’s hospice for a few days.  Let me be clear, Ethan is doing really really well currently but like all those experts like to remind us, Ethan has a terminal condition.

Ethan is fifteen which is seen as a ‘good’ age considering he has Hunter Syndrome , I even hate typing that but it is still a fact whether I type it or not.

We are going to a children’s hospice for two nights with Ethan. I’ve never been to a hospice let alone a children’s one.

I’m sure it’s bright, airy, full of fun , love and laughter but I wonder if there is a sadness there too and if there is , will I be able to handle it, will my husband ?

That question I cannot know the answer to until we visit the hospice.

We were offered the support of the hospice simply because of Ethan’s condition.

We heard about it years before but never felt comfortable with accepting their support as Ethan wasn’t what we would call ill at all. Ethan, at that time did not need medications, supports or help with feeding, dressing …all he needed was two eyes on him at all times and a willing sprinter!

It was this time last year that the hospice was suggested to us again.

I still said no, Ethan had such a severe decline that I was afraid if I had said yes, that I was admitting that Ethan had not long left with us.

When we got Ethan stable again, we began to ask more about the hospice and what they do.

Turns out they do a lot of cool sh*t! There are fun days, parties, special events and even some sort of mock Oscar nights!

They include the whole family and they help us make some memories as a family. They also provide support to us and help us get what Ethan needs in his local community.

I think now is the right time to visit the hospice, while Ethan is well enough to enjoy what they offer and truthfully , if he has a rapid decline again, I think the support of the hospice will be invaluable to us as a family.

I don’t know how I will feel or how my husband will feel when we first step foot into Laura Lynn but I think Ethan will feel very special while there and I have no doubt that they will all love him.

These are the kinds of milestones, no one could have prepared us for.

When There Isn’t Room for the Basics

I’m not talking the community-type ambulances for patient transport here, but the ones that you see racing along the roads with their sirens and lights going, letting people in front know to move out of the way because they need to get a person to hospital fast.

I bet you’re thinking well, you take the wheelchair with them to hospital, right?


It’s something most people don’t even think about. And why would they, it’s not something they would *need* to think about.

But modern ambulances are like mobile intensive care units; there simply isn’t the space for a wheelchair; nor is there anyway of securing the thing while in transit.

Sam’s wheelchair isn’t a run-of-the-mill variety that folds down to fit into a car boot when travelling; it’s a specialist, modular chair made just for him. In a funky lime green colour no less. And it is *big*.

When we travel with Sam in our WAV, Sam’s chair is secured to the floor of the van with four tension straps so that the chair is held firmly in place and won’t move while the van is travelling.

So, while Sam is being rushed to hospital, we have to face the 2.5hr round trip to get to his school and back again before we can join our boy in the emergency unit. It’s brutal.

It’s the same when it comes to using the loo when out and about.

Sam is far too tall and heavy to be safe on one of the baby change units so often seen.

This means that to change him, Sam needs enough space in the loo to allow his wheelchair and a minimum of one able-bodied carer to be in with him.

Have you SEEN the size of most disabled loos these days?! If it wasn’t such a degrading and distressing experience for all of us it would be comical.

In addition to a lack of basic equipment to allow us to hoist him and change him on a CLEAN changing bench, rather than manhandling him onto a dirty toilet floor, there simply is not enough room for the basics.

Surely in this day and age of equality and diversity, things have got to change?