Reference point

20170213_210941.jpgI popped a little note into my big daughter’s lunchbox for today, Valentine’s Day. Nothing elaborate; just to say I love her. I didn’t bother for my youngest daughter – she can’t read yet, and to be honest she’d probably just eat it. And Benjy, well Benjy will be with me all day anyway. I hope he knows that I love him. I think he knows.

It got me thinking that, at this moment in time, nobody loves my children more than I do. Their Daddy loves them just as much, but nobody loves them more than us. How could they? We – in our love for them and our love for each other – are their reference point for love. The yardstick against which every future love will be measured.

Their reference point for love. Just as my parents were for me. It was hard for me to understand, until I became a mum myself, just how much my mum must have loved me. Sitting up through the night when Jackie had chickenpox, helplessly wishing I could take away her pain, I remembered my mum doing the same with me – holding me, rocking, imploring me to squeeze her hands as hard as I could, as if I could transfer the pain on to her. My reference point for love.

I’m secure in my marriage because I know my husband loves me that much too. He’s already seen me through health and sickness, through living on opposite sides of the world, through typhoid fever and a motorbike crash, through life-and-death decisions and through childbirth and all that has followed; he loved me before and after and because and despite of all that. Some day my girls will grow up and, I hope, find someone who loves them as much as that, as much as I do. Who meets their reference point for love. But Benjy? He’ll never find someone else to love him like that.

Jackie says ‘I love you Mummy’ a lot. When she’s been naughty. When she’s tired and snuggly. When I’m not paying her enough attention. Caitlin’s just starting to get cuddly, to hold up her chubby little arms to be picked up, to snuggle in to your shoulder with her curly head. But Benjy? He’ll never say ‘I love you.’

During a hospital stay last year one of our favourite doctors observed that Benjamin smiled every time I spoke. ‘He knows mummy’s voice,’ she said. Another doctor commented that ‘his heart rate goes up when you go near’. I can’t decide if that’s the least romantic thing I’ve ever heard, or the most. To be reliant upon a number on a monitor to tell me that my son loves me? Or to be fortunate enough to have him plugged into a machine that actually tells me his heart leaps when I walk into the room?

I hope he knows that I love him too. That my heart, too, leaps when I am with him. That nobody will ever love him more than I do. That whether he knows it or not, I will always be his reference point for love, and he, in his unconditional way, will be mine.

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Looking over the precipice

I have not yet known grief, only fear.

The special needs community is oftentimes mired in grief. But I am one of the lucky ones. I have witnessed others’ losses, but I do not know what it feels like to lose a child, in or out of the womb; I can only read the writings of those that have been there, that are forever there, and be grateful for their honesty and insight.

I imagine grief to feel like defeat. A final losing of the everyday battle against the second law of thermodynamics, that nature inexorably tends towards a state of entropy. Every day, we hold off death. Every day, we potentially save our children’s lives, whether by holding their hand as they cross the road or halving their grapes lengthways lest they should choke.

For some of us the threat of death is not just potential but real, visceral and terrifying. An occasional, weekly, or even daily, stomach-churning teeter on the edge of a precipice. An adrenaline rush, a mental and physical battle with everything we’ve got that leaves us spent, exhausted, cold and shaking. Victorious, but full of fear.

One amazing fellow SWAN mummy and blogger I know has literally to resuscitate her little boy every time he has a seizure – which during a bad patch may be several times a night. When he’s going through a cluster of seizures, she sits up next to him all night, anti-convulsant medications on the one hand, ventilation equipment on the other. I imagine it’s adrenaline – and love – that pulls her through. That pulls her beautiful boy back from the precipice each time to fight another day.

I’ve looked over that precipice a few times now, and the view never gets any easier to stomach. Before Benjamin was born; and on the day of his birth; when I’ve held him helplessly in resus as he fitted for hours; when I’ve battled with him against the mucous filling his lungs and choking his airways, my only weapon a slim catheter and a suction machine; when I’ve heard the anaesthetist matter-of-factly report ‘we lost his heartbeat for a while there in theatre,’ and my own heart skips a beat.

And although it’s futile, ghoulish, I imagine what grief might feel like to his siblings, who have never known life without him, and to whom mummy can do anything. Utter shock, bewilderment, betrayal. If I let him slip over that precipice I have failed him, and failed them.

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Is it any wonder I’m fearful, anxious? Not clinically anxious: not an extreme reaction to normal situations (although I know that can be just as terrifying and paralysing), but a normal reaction to an extreme situation. A situation that just keeps on coming.

Keeps on coming, until the day I cannot pull hard enough back from the edge.

I wonder, if (when) we hit the bottom, what then?

Will there be silence? Even relief? Will there be a peace that the fighting is over, for me and for him?

Will I rant and rail with anger at the injustice? Will I look up and wish to be back there on the precipice? Just for one more day, one more hour, one more smile, one more kiss?

Will I regret living my life in fear? No. Because without fear, without adrenaline, without ‘fight or flight’ the only way off the precipice is down. Because when the fear is gone, then I will know and understand the grief.

Skills for my CV (not)

A few weeks ago my eldest starred in her first ballet show. It was an incredibly serious affair: no nail varnish, no dark coloured pants, hair must be secured in a proper bun, held in place with pins (not bobby pins) and a net to match the colour of the hair, all hair to be held back off the face with gel, no hairbands, clips, … Phew.

Thank goodness there was a rehearsal. Thank goodness for a YouTube video showing how to make a figure of eight out of a hairnet. Thank goodness I didn’t let my little girl down! I might not have passed with distinction, but I was happy with a grudging ‘that’ll do’ from the ballet teacher. Another skill to add to my repertoire, another skill that before I became a mummy I never imagined I’d have to master.

'Could do better...'

‘Could do better…’

In fact, after I passed my PhD and took my driving test I thought that would be it. I thought I’d never to take a test again. I had everything I needed on my CV.

And now, here I am again, hands shaking, while a community nurse ten years younger than me ticks off my competence in changing a gastrostomy button. If only she knew I had to use a car key last time… I am now trained and signed off to deliver gastrostomy feeds and medicines, to change and care for a mic-key button, to deliver oral and naso-pharyngeal suctioning.

I am trained to give physio and specialist chest physio, to use a PEP mask and an inhaler and administer a hypertonic saline nebuliser, to make up antibiotics, to give appropriate sensory and visual stimulation to aid Benjamin’s learning. I can work a sats monitor, a bath seat, a profiling bed, set up a sleep system and adjust a special needs buggy. I am learning on the job how to manually handle a 15 kg (and growing) weight, how to negotiate deals, how to manage agency carers, and how to make crucial medical decisions, sometimes every day.

Every new parent has to develop a whole new set of skills that would never make it on to anyone’s CV. Cutting tiny fingernails. Changing a dirty nappy with half a hand. Developing recipes that everyone will like and prevent scurvy. Finding the missing teacup from the Sylvanian family’s picnic before all hell breaks loose. Intercepting pieces of bread and empty yogurt pots as they are hurled across the kitchen. Often, simply getting everyone to where they have to be in the right clothes and with the right equipment and then getting back on time to pick them up again feels like some sort of game-show challenge.

Yet parenting a child with complex needs takes the job description up a whole new level. Special needs parents are, as the charity WellChild puts it, ‘#notanurse_but’. I don’t yet have to administer home IV’s or maintain a tracheostomy, but if I have to in the future, I’m ready. The more skilled I can become, the more we might be able to keep Benjamin at home and the less time he might have to spend in hospital. Every new skill I can learn, even if it goes nowhere near my CV, could make Benjamin’s life more comfortable and keep our family together that little bit longer. And frankly, nothing I’ve yet had to learn has been harder than putting a ballet bun on a four-year-old.

How come you never get my hair right then mum?

How come you never get my hair right then mum? I’m not auditioning for Jedward…

It was the best of times, it was the worst of times

(Charles Dickens; A Tale of Two Cities)

The experiences of our little household pale into insignificance against the backdrop of political turmoil, cultural change, and sad losses amongst our beloved SWAN community, that characterised so much of 2016. Nonetheless, we had our own ups and downs…

Our year started on a knife edge as we awaited the final scan of our unborn baby three weeks before its due date. A year on, I simply cannot imagine life without the chubby little bundle of laughter, energy and character that is our Caitlin. Her middle name, Faith, reflects the gamble we took and the faith we had that it would work out, but I had absolutely no idea just how well it would work out; what an incredible difference she would make to our family, how happy she would make us and how she would complete us.

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Do not be fooled by the angelic appearance

Aside from Caitlin’s birth, I recall little from the first few months of the year. They have become overshadowed in my memory by the period from May onwards, during which Benjamin has been repeatedly, seriously, ill. Over that time it has been rare to have more than two weeks at home between hospitalisations, operations, intubations; week after week in high dependency and many, many doctors scratching their heads. During this time family life has inevitably suffered. We’ve been living long-term on a short-term emergency footing, planning day to day, shifting the girls from pillar to post, every one of us missing the others, staggering from one admission to the next with barely time to breathe. The doctors now say this will likely continue for years.

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But while Benjy’s physical health may remain precarious, the impact on our family doesn’t have to continue. Positives have emerged from the situation. For a start, we’ve really discovered who our friends are, just how numerous and how generous they are. We’ve fallen firmly on our feet in the community we chose to live in and we have felt included and loved within it this year.

Our two girls have proven to be a huge support, to ourselves and to each other, during the interminable hospital stays. Tolerant, patient and flexible, although often separated during the day their relationship has come into its own whenever they are together. This year would have been so tough on either of them had they been alone. Together, they have borne it far better than I, and forged the foundations of a strong, loving relationship (and comedy partnership) that I hope will last long into adulthood.

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Plotting something

For myself, the initial despair that we might be facing more years like 2016 pushed me to accept that we should ask for more formal help; that we should make a plan. With much help and encouragement from my social worker aunt, from the charity Kindred, from social services, Rachel House Children’s Hospice, and others, I have built a package of practical, medical, emotional and financial support that gives me hope that we enter 2017 more resilient, able to move on from our emergency footing to live life despite, during and through Benjamin’s hospital admissions.

We are now better placed to support Benjamin as much as we can from home: with prophylactic antibiotics, a nebuliser, suction machine, ‘sats’ monitor, weekly specialist physio visits and emergency feeding regime. The down side, of course, is that our home is more like a hospital and my role more of a nurse, but that’s a small price to pay for less time actually spent in hospital and torn between my children.

With support from social services, Caitlin will be able to attend nursery even though I am unable to go back to work to pay for it (and I’m more than fortunate that my employers continue to be incredibly flexible and understanding about this). It’s a little earlier than I would have liked her to start, but will give her a consistent place to go when I’m in the hospital with Benjamin and – even better – the same consistent place as Jackie. Being the outgoing little soul that she is, and being so used to being cared for by strangers, she settled in without a backward glance at Mummy. Like Jackie, she’s already having to grow up too quickly; it’s bittersweet but I am so proud of her.

Proud of me? But I'm stuck under a table...

Proud of me? But I’m stuck under a table…

And, when he’s well enough, I’ve also thrashed out a plan with Benjamin’s teachers and headteachers, council safety and transport officers, and his incredibly competent and lovely school nurse, to enable him to attend nursery too! It’s going to take some dedication from us all, but eventually he should be able to transition to the two full days he’s entitled to at his age. The way his eyes light up when he enters his classroom shows that this is absolutely the right thing to do, and the work we will put in to get him there is nothing compared to how hard he works to hold his head up, to move his eyes, to switch his switches, when he is there. Benjamin is the inspiration that keeps us all moving forward.

Other things have fallen into place to make life seem easier as we move into 2017. We have a car. We even have a parking space for it! Benjamin has qualified for monthly respite breaks from NHS Lothian Children’s Services. He’ll receive his vaccination boosters again and he’ll be tested and retested as doctors continue to seek answers to his problems. He’s been accepted for therapy at the renowned Bobath Cerebral Palsy Centre in Glasgow. 2017 will be nothing if not busy!

We know not all of this will go to plan. Benjamin will, without doubt, spend extended periods in hospital. Plans will be put back, put on hold. Some days it will take all my efforts to keep him well enough to stay home. Some days I’ll be successful: already over the past few weeks he’s had infections that I’m sure would previously have seen him in hospital, and the feeling of achievement when he comes through one is almost enough to make up for the lack of sleep! Some days I’ll get things wrong. Some days he’ll just be too sick, and I have to responsible enough to make that call. But being in hospital is no longer the spectre it may seem from outside. Being ventilated is not to be feared, it’s just the level of support he needs at that particular time. All the time we are learning, our normal is changing, and through all that we can cope and we can thrive.

Thus our big lesson to take into this New Year is to manage our expectations for it. To hope for the best and prepare for the worst but never to fear it. I don’t mean this to sound negative: if we can prepare for the times of sickness we’ll be ready to take full advantage of when Benjy’s well. So while I know I’m not going to get a foreign holiday – or even get to London – for a couple of years, if Benjamin is fit and the weather is fine we can damn well pack the tent into our big new car and have just as much of a break a few miles down the road. We may not be able to commit to a dog, but our new guinea pigs will be showered with love and (maybe rather too rough) affection.

Just before Christmas I received a phone call from our new paediatrician, not with an appointment, a cancellation or a result, but just to check how we were doing and to tell us that everyone in the Sick Kids was thinking of Benjamin and wishing him well. I can truly believe that, because Benjamin brings out the best in people. In what could have been, if not the worst of times certainly a difficult year for us, our children, friends and family, the professionals that work with us and all those who helped us, have made it one of the best. With the festivities falling nearly three weeks after his last release from hospital I knew we were on borrowed time, but spending Christmas morning opening stockings in bed with all three of my children is something I will always treasure, and a memory that will carry me through whatever the next year may bring. With much love to all our readers for 2017.

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Mother’s intuition

I don’t believe in mother’s intuition. I don’t have a sixth sense where Benjamin – or any of my children – is concerned. Three times around, I had no hunch when I was pregnant, no idea when I was going into labour. I’ve rushed Jackie to the GP with ‘appendicitis’ which was just sore glands, and Caitlin with conjunctivitis which wasn’t. I panic that I’ve picked up a stomach bug … then remember I had jalapeños on my lunch.

But I do believe in accumulated experience, especially where Benjamin is concerned (he’s packed a lot of medical experience into his three short years so far). I do believe that no-one knows Benjamin quite like I do. That no-one has sat up night after night with him like I have. No-one’s ear is as attuned to his breathing, no-one’s eyes to his skin colour. No-one remembers which symptoms have later proved serious and which have evaporated into thin air. No-one else wakes up automatically just before he has a seizure or starts to choke. Even I, consciously, don’t know what my unconscious memory knows.

Time and time again, he’s been a bit poorly, nothing we can’t deal with, nothing you can put your finger on, but each time I’ve taken him up to A&E after a few hours – or even by the time we’ve arrived – he’s deteriorated to the extent that there is now no question whether he should be there. Take last week: he had a cold, more secretions than usual, needed some more suction, but his saturations were good; nothing I, in theory, couldn’t handle. In A&E we triaged at a meagre level 3 – we even spent some time in the waiting room! Yet a few hours later he was vomiting canary-yellow slime (all credit to the first year medical student who kept it together and went rushing off for a sick bowl) and having repeated seizures. Somehow, I usually make the right decision and get him to the care he needs in time.

Benjamin is a brave boy. Silent, stoic, smiley, he saves the worst of his pain only for Mummy. I get more tears than anyone else because it’s only in my arms that he will let go and show how tired he is, how sore he is, how unwell he is feeling. It breaks my heart when he whimpers in my ear but at the same time I feel honoured that he chooses me, thankful that he can tell me, and terrified of the responsibility. Who will he tell when I’m not there? Who will understand what he is telling them? Who else will ‘just know’ when something’s wrong? What if he’s at school? What if I’m sick? Who can know Benjamin like I do?

That’s why I’m glad that it’s not just mother’s intuition, because while intuition can’t be shared, experience can. And that’s why I need to start sharing, letting go, letting people in. We need a team of people around Benjamin who can read his signs and symptoms, who understand how he communicates and can interpret his language. Who don’t need to go through his three-inch-thick folder of medical notes to remember the last time he displayed with similar symptoms. I’m so grateful that the first people who will be on the frontline – his fabulous nursery teachers – are fully engaged with this (thank you, ladies, you know who you are).

It is so scary to have a child in hospital. But it’s even more scary to feel out of control, sidelined or disregarded in that situation. At our local hospital, Edinburgh’s Royal Hospital for Sick Children (the ‘Sick Kids’) we are blessed with an amazing team who acknowledge our knowledge as parents. Who look at the test results, the monitors, the scans and the patient, but always ask us how we think Benjamin is and how we would like to move forward. Who never push us out the door when we feel he needs to stay, but do their utmost to get us home when we feel ready to go. Who may not believe in mother’s intuition, yet know how important it is to listen to mothers.

But they can’t listen if we don’t make some noise. I’m not great at speaking up when what I want to say is in disagreement with the professionals. Take Benjy’s most recent chest infection, which it’s pretty clear was caused by the 500ml of fluid he was made to take prior to an MRI scan. For a child used to no more than 100 ml per hour, I knew this would spell trouble, but I went along with it so as not to make a fuss. Sure enough, he vomited up the vile yellow liquid and some of it ended up on his lungs. Next time, I hope I’ll be more confident at speaking out when I know a treatment is not right for him.

Thankfully, Benjamin is almost ready to come home from this most recent stay. As his mother, I can only thank the team at Edinburgh Sick Kids, for saving Benjamin’s life on numerous occasions, for making his hospital stays as comfortable as they possibly can for Benjamin and for us as a family, and for listening and acting on what this mother knows. To support the Edinburgh Sick Kids Friends Foundation Christmas Appeal, you can text ‘SKFF16 £5’ to 70070. From this non-intuitive and still-learning mother, thank you.

They didn’t listen when you said it was too early to put the Christmas decorations up…

Being Benjamin’s mum

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to be a [mainstream] parent.

I know they mean well. If you’re struggling with sleepless nights or a tantruming toddler it’s good to be reminded of the positives, right? But what if none of those things that make mainstream parenting fun apply? What if ‘discovering how lovely the dawn chorus can be’ just doesn’t cut it? What if you’re never going to hear him ‘say I love you Mummy’? Is parenting a SEND child no fun?

Yes, it can be exhausting, challenging, nervewracking, heartbreaking. But I firmly believe that deeper troughs make for higher peaks. SEND parents not only learn to celebrate the tiniest inchstones for all they are worth, but to see the funny side of things that frankly aren’t funny at all! I’m sure these will be different for every SEND family but, on Benjamin’s third birthday, I’ve put together my own list of reasons it’s fun, wonderful and inspiring to be his mum.

  1. He gives the best smiles
  2. He gives the best hugs
  3. Running my fingers through his curls
  4. Looking into his big brown eyes
  5. Tickling the baby-soft soles of his feet
  6. Savouring the simple things with him – the light coming in the window, leaves against a blue sky
  7. Seeing the love his siblings have for him – and how he reciprocates it
  8. Seeing how gentle, loving and patient his Daddy is with him
  9. Seeing his heart rate go on up the sats monitor when he hears Mummy or Daddy’s voice
  10. His smile when you give him a taste of ice cream
  11. His look of disgust when you give him pureed chicken!
  12. Learning a whole new set of skills (nursing, negotiating, engineering, accounting, …). If only I could put them on my CV…
  13. The sense of satisfaction when you hoover a big plug of phlegm out of his throat
  14. The way he looks around in delight when you put his glasses on
  15. How cute he looks in his glasses
  16. An excuse to hang a disco ball in your lounge and have fairy lights up all year
  17. An excuse to play with bubbles every day
  18. Getting to watch Waybuloo on repeat
  19. Shopping – who knew how many gorgeous bibs and onesies there are out there nowadays?
  20. Choosing cute teeny tiny glasses
  21. Choosing snuggly jumpers and snugglier socks
  22. Rediscovering the joy of Christmas – baubles and fairy lights really are all you need
  23. Seeing how he relaxes in the bath
  24. The sense of satisfaction when you manage to capture that smile on camera
  25. Learning his unique language
  26. Seeing him turn his head to look at me when I speak
  27. Seeing him smile when I walk into a room
  28. The special kisses that he saves just for mummy
  29. The special nappies that he saves just for Daddy!
  30. Morning snuggles with five in the bed (we really need a bigger bed)
  31. That feeling that you could watch him sleep forever
  32. Making amazing new friends with amazing wee heroes for children
  33. Meeting a community of other SWAN parents who just get it
  34. Everybody in the town wanting to stop and hear how he is
  35. People passing in the street saying ‘You’ve got your hands full!’ and thinking ‘Yeah, and I wouldn’t have it any other way.’

All this in just three years; I can’t wait to see what you bring us in the future. Happy Birthday my gorgeous boy, I am truly grateful to be your mum.

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It could be you

We’ve all been there, right? It’s the middle of ‘circle time’ at that posh playgroup, or ‘relaxation’ during baby yoga. The other little darlings are sitting still, smiling, cooing gently, in their pretty pinafores while the mums sip their coffee and decline another chocolate digestive. Suddenly there’s an eruption. You can tell by the squelchy sound that this isn’t a false alarm. You can tell by the aroma that he’s started weaning. You can tell by the warm puddle on your jumper that it was your offspring responsible…

So you pick him up, not sure whether to hold him at arms’ length to protect the rest of your outfit (although it’s already covered in that orange dye they seem to put in all children’s snacks), or cuddle him in close to prevent him dripping on the carpet. Either way, he has his back to the rest of the mummies, who wrinkle up their noses and hold their darling daughters a little tighter as they see the tell-tale yellow stain creeping up the back of his vest.

Grabbing your changing bag you rush him into the bathroom and plonk him on the changing table, holding him with one hand to stop him wriggling off while with the other hand you rifle through the changing bag and silently pray that you remembered to repack some spare clothes after the last incident.

Half a packet of wipes later and he is looking angelic in a fresh nappy and clean clothes. You roll up your sleeve to hide the remains of the stains and try to tweak your hair into a slightly less dishevelled mess before re-joining the throng, who have by now completely forgotten the incident and are cheerfully comparing Bugaboos on their way out.

Not every nappy explosion has such a happy ending.

Now imagine you weren’t at a baby group but another everyday activity – out shopping, maybe, at the railway station, or in the pub. Imagine your son wasn’t six months but six years, or sixteen, or sixty. Imagine he’s in a wheelchair.

You can’t lift him onto a baby changing table, in fact the changing table is too small and won’t take his weight anyway. If you’re going to get him laying down, you need a hoist to lift him and a full-sized bench to lay him on. That’s if you can get his wheelchair into the bathroom at all, along with yourself and his feeding pump, suction equipment or oxygen tank, let alone your shopping! What do you do? What do the quarter of a million people in the UK, who cannot use a normal toilet or a standard disabled toilet, do?

Sadly, in 2016, most of these people, in most parts of the UK, have three options: they can remain sitting in their own waste; they can give up and go home; or, if they have a carer with them who is able to lift them out of their wheelchair and onto the floor, they can be changed on the toilet floor. That’s right, the toilet floor. Where people stand. Where people pee. Where people throw rubbish. Where germs accumulate in cracks and crevices. Where pools of stagnant water or worse lie. Where uncoordinated arms and heads can bash against concrete, metal and porcelain in a room that’s too small to lie in. Some families carry a waterproof picnic blanket with them, to keep their loved ones clean(ish) while they are changed – and to carry reminders of the toilet floor with them on its underside when they leave…

What happened to health and safety?

If travelling by car, some families change their disabled members on the back seat or in the boot, in the open air for all to see.

What happened to dignity?

Some disabled people – especially those too heavy for others to lift, i.e. most adults – simply can’t go out, at least not for longer than they can guarantee not to need the toilet. Imagine if you couldn’t go out for more than two, three hours at a time, ever, just in case you needed to pee. Imagine if you couldn’t take your child out just in case they needed to pee.

What happened to inclusion and access for all?

You may not always need to imagine. You may (God forbid) be in an accident. You may get sick. You may just get old. It could be you. Soon, it will be us. My son Benjamin is a charming, happy little boy. He loves to feel the wind on his face, see the sun shine through the leaves of the trees in the park, to watch movies and, particularly, to flirt with any brunette that walks past. He also has quadriplegic cerebral palsy, is doubly incontinent and, aged nearly three, weighs 14 kilos. That’s already too heavy for many baby changing tables – unsurprisingly, because he’s no longer a baby. Yet that which is almost universally provided for babies these days – a safe, hygienic and dignified place to change – is rarely provided for children and adults. Suddenly, just because he is older and bigger (both things we are immensely proud of), his safety and dignity are taken away. Our immunocompromised little boy will have to be laid on a dirty toilet floor, or spend the day sitting in his own excrement, or be confined to the house.

You don’t have to be incontinent to face this, you simply have to be unable to transfer from a chair to a toilet without help or a hoist. Or even to use a wheelchair too large to fit into many disabled toilets. Our heroic paralympians, our war veterans, our elderly relatives. It could be you.

It doesn’t have to be like this. What if someone designed a toilet with a height-adjustable bench large enough for an adult to lie on in safety, a hoist to transfer them to it, and enough space to get a wheelchair and a carer (if necessary) alongside? What if? It might surprise you to know that someone already has. It’s called a Changing Place. Why have you never heard of it? Because there are only about 900 in the UK. That’s one for every 2500 square kilometres.

Disabled toilets are not enough. Changing Places are so important to the battle for inclusion and equality. In our nearest city, Edinburgh, there is no Changing Place at the airport, in the railway station, in any of the museums or galleries, or anywhere on the main shopping street. Not in John Lewis, nor Marks and Spencers, not in Harvey Nichols nor the famous Jenners.

The Equality Act 2010 requires organisations to make ‘reasonable adjustments’ towards accessibility and that just isn’t happening. We don’t need a Changing Place in every corner shop. But we do need one in every hospital, airport, department store, motorway service station, and town. It might not matter to you now, but one day it will matter to you or one of your loved ones. One day, it could be you.

dsc_2019.jpgThis Halloween, join the #phantomloos campaign. Sign the petition. Ask the large organisations you use whether they have a Changing Places toilet and if not, why not. Find your nearest Changing Place at http://www.changing-places.org/find_a_toilet.aspx

#benchandhoist #changingplaces #spacetochange #phantomloos

Read other #accessibilitystories at http://www.theinclusivehome.co.uk/accessibility-stories-oct-16/