Do you ever have one of those days that just flies by from all the paperwork and admin you have to do? (Yes cez, everyday is one of those days) – I hear ya. I recently had a morning at the computer ordering prescriptions, ordering feeding supplies, ordering keto feed ingredients and so on. I was slowly working my way through the list thinking how much better I’ll feel when it’s all complete. Then suddenly an email comes through.

Time to renew the blue badge. My heart sank a bit. I remember last time rifling through documents for proof of benefits and birth certificates etc. I really didn’t want to do it on top of all the other jobs but I knew it’d be a great job to have over and done with. So I went about the task diligently and calmly. I filled out all of the form, paid the money, and scanned the documents. Sent it off. Done. Let’s have a coffee.

Fast forward a few days and I get an email (not an automated one this time) explaining it was accepted and processed. In my half asleep state I only skim read the email and responded with a “thank you for your help”. Later on that day, I read the email again and to my shock noticed they could only approve it until February next year. Their reasoning was that we would be due to renew Amy’s high rate disability claim. I was astounded. I am frustrated that in 6 months time I’ll have to go through that whole process again, pay the money again and then in addition to this fill out a 70 something page document so that we can continue to receive Amy’s DLA. 

Sometimes the lack of common sense surrounding these claims is outrageous to me. Amy’s disability is severe and lifelong. It will stay the same, or things will get worse. I know that in the early days of her diagnosis you don’t always know what the future holds. There is a chance that with some children they will eventually learn to eat orally, or perhaps take steps etc. But for us we learned relatively early on that Amy would be significantly impaired in terms of mobility. I also knew that tube feeding would always be happening even if she learnt to eat a little orally. 

To me in severe circumstances, these things should be approved indefinitely. Why put us through the pain of endless paperwork and calls proving we need what we need? I am yet to read of someone’s cerebral palsy disappearing as if by magic.

So I did what I usually do when frustrated. I wrote a little rant on Facebook.

I was surprised by the variety of different outcomes people have had in similar circumstances. Some people get theirs approved for several years. Some have had to apply twice in a year. Some have been denied (wrongfully) and had to go to tribunals. There seems to be a huge lack of consistency and a disparity between treatment from one family to the next. I totally understand that those making the decisions need to ensure no foul play. They need to be certain that people aren’t “playing the system”. But it really should be reviewed case by case.

I am told regularly to focus on Amy’s abilities and I accept and wholly love her for who she is. I find it quite damaging being forced to put pen to paper and paint the picture of the darkest days. When you put “non verbal, non mobile, tube fed, dystonia, athetosis, asthma” and so on, I feel this should only get put once and that be it forever. Unless by some strange twist of fate she wakes one day with a fully recovered brain, things should just be left as they are. The system doesn’t seem designed to be user friendly, efficient and helpful. It seems to throw out obstacles, challenges and at times mistrusts us. It rarely feels that we are being worked WITH.

I don’t understand why we must continually have to prove why we need what we need.

I don’t like asking for things. I don’t like needing help. So if we are asking for it – it’s because we need it. This isn’t just for the blue badge situation, it’s across the board in so many areas of our lives now.

I am sometimes saddened when I see our friends in America get declined by their insurance company for a piece of equipment they didn’t want their child to need. I have seen people be declined for standing frames – something that we have had since Amy was 9 months old. I’ve seen people be declined a wheelchair even though their child can’t walk. We got our first wheelchair when Amy was 2. People are asked to prove their need, gather evidence, demonstrate the need, get letters from professionals agreeing to the need – to still be declined!!

These rejections add up. They can make or break you.

Either you get so fed up with fighting that you resign yourself to whatever fate they decide for you. Or you don’t take no for an answer because your child deserves the best (at least the bare minimum!!). I vacillate wildly between the two several times a day, everyday. Let me tell you, maintaining the physical and emotional energy to battle this day in and day out is exhausting. It depletes you of resources and can leave you floundering. It can leave you awake all night and wanting to sleep all day. It can mess with every fibre of your being.

So often the reason for it all is money. Some days I am campaigning for better accessible play equipment at parks and changing places to be installed at more venues. Other days I am wallowing, wishing I had the energy to prove why we need whatever is needed next. So much of my time is dedicated to either getting through the day, or how to make the next day better for all of us. Right now I am neglecting prepping tomorrows’ feed batch and meds. Everyday there are a multitude of calls I am putting off, tasks I am procrastinating on, errands I am shirking; all so I can achieve the bare minimum without wanting to go to bed before the last feed of the day is finished. 

I have been trying recently to become more healthy. I have gained so much weight over the last 7 years. I worry about my witness, and not living well enough to care properly for everyone. I have cut down hugely on carbs and snacks. I am trying to lower adrenaline and cortisol levels with reading, funny/interesting podcasts, blogging, getting into nature, and walking. I am trying every avenue I can to remain positive and become less short tempered. Often I slowly start to regain energy and optimism and then something will happen that will plunge me back into reality and force me to fight against my anger, anxiety and frustration. It’s a constant battle. I sometimes worry I am putting too much pressure on myself and need to take a step back and reflect. I realise that anyone else in my situation I’d be telling them how proud I am of them and to keep going – and yet to myself I berate myself and wish I could be calmer, more mellow, more patient, slimmer, everything. I can’t undo 7 years of bad food choices in 1 day. I can’t change how our entire system works so that it makes sense. I can only do what I can do. One step at a time. One form at a time.

Every night as I switch the feed over to an overnight water feed, I look at my beautiful daughter (pften awake, the sneak!) and am reminded of why we do this. That she is worth every bit of it. Her and her dad are everything to me. I have so much to be grateful for. It’s easy to lose sight of what’s important when life is passing you by so quickly. So many different things demanding your time and energy. Sometimes, you need to stop, take a deep breathe, remember why we are doing this and to enjoy the moment, however fleeting those calm, quiet moments may be.

We will get there. Just keep going.

People are transient. Through our life with Amy I have made probably more connections in the last 7 years than I had made in my entire life prior to that. I can’t leave the house without bumping into someone who knows me via Amy. Sometimes I don’t even recognise that person and have an internal panic. Not only does she have a massive team of specialists, staff and experts – people are fleeting. 

People get new jobs, people retire, people move away to new areas. My child gets past a certain age, she moves onto a team for her age group. I’ve met people who remember us from years ago who claim that meeting us inspired them to go into the job they go into. It’s amazing how these chance encounters can alter the trajectory of someone’s life.

One of the things I grapple most with, is my emotional attachment to those who make a real difference to us.

You know in your heart when someone cares as in really cares. They don’t just care because they are paid to, but because they are human like you, and they like you and your child as a person and want to see you all thrive. Those people become indispensable to you. The shame for those indispensable people is that it puts a lot of pressure on them. They become your go to person and thus increase their own workload by virtue of being helpful. It also impacts that professional barrier that has to be kept up. If that barrier comes down and emotions get involved, it can complicate things. 

It’s hard working so closely with people for so long without starting to feel like they are extended family. It’s a really hard line to draw. It’s only natural that you become like colleagues or friends.

Amy has just been in the same class at school for two years. In September she moves onto another class. Today I find myself emotional as it means a team of at least 7 people will no longer feature in her everyday routine. It’s 7 people that understand her. It can take a lot of time to understand families like ours. Amy is non verbal, but if you spend enough time with her getting to know her, she has so much to offer. She has so many non verbal cues that you will only pick up on from knowing her for a long time. So to me, people who have been with her for a long time are really important to us. It’s an anxious time for any parent when their child starts a new class or a new school. I remember as a child those nerves in my belly on the first day back. “who will my teacher be? will they be kind? will they understand me?”. I feel butterflies in my stomach even thinking about it.

When we had to change pediatrician as ours was moving to another hospital – I thought my world was collapsing. I felt as if the rug had been pulled from under my feet. Our doctor had been there since day 1. I remember our earliest discussions. “What if she never cries? How will I know what’s wrong?” I remember her asking me what concerns I had about going home. This was at a time I thought we may never be going home. She helped us in more ways than she could ever know. She guided us and taught me so much. She listened as she really listened. If there was a different treatment I wanted to try she didn’t do what some doctors do and shrug it off, she would discuss with colleagues, read the studies I sent her, and we would plan it together. So you can imagine my shock when she left.

I had that sick feeling in my stomach. Who will our next doctor be? Will they know Amy?

Experienced as they may be, they weren’t there from day 1. It’s so draining having to explain yourself and your child over and over again. Anyone who has had as many hospital admissions as us will know that feeling when they ask “what medications are they on?” “can you give me a brief history of Amy” and so on. You know as well that during an admission you’ll have this exact conversation at least 3 times a day. You know they’re just doing their job but wow, talk about groundhog day. (Thankfully at our local hospital some of the team run through this stuff quickly as they know us well!)

All of this anxiety I feel stems from that feeling of “what will happen if I’m not here one day?”. I don’t want Amy to be here without us being confused as to why she has been “abandoned” and why suddenly there is no one around who can understand her. It’s the sort of thing that if I think about it too much I can send myself into a panic attack. I am working hard to accept that so many people will come and go and that nothing is permanent. I have to hope that those who do care and do stay, keep investing that time and patience into us and that they know just how important to us they are. I hope that Amy never ever feels lonely, and I hope that she feels more and more understood as she learns and grows. I hope she knows how valid, loved and important she is and that there are always people around who reinforce this to her. She has been through so much and plods on with a determined ferocity everyday, I could not be prouder if I tried.

There are still people from 6 years ago I think about daily and the impact they made on our lives.

I feel grief and sadness that they are gone, but also grateful for their time and experience. What may have been only a fleeting microcosm of their vast career might be something that to this day is giving someone somewhere else strength today still. 

I often joke about enjoying being a bit of a loner and a homebody. But the truth is we all need connections and friendships. When you’re a parent carer you are sort of forced into a more isolated way of being. I no longer walk into an office of hundreds of familiar faces each morning. I no longer chat and laugh around the coffee machine with colleagues. I no longer attend team meetings and cringe at ice breakers. I often stand alone at my coffee machine thinking of those simpler times, knowing that my next conversation will likely be with carers, physio, teachers, doctors, etc. I read about Amy’s day at school hanging onto every word knowing that she can’t tell me about her day. I keep refreshing the app desperate to know that she had a settled or happy day.

I wait eagerly for Phil to come home from work, a bit like a pet really. This of course will change as Amy breaks up from school today – So I’ll be plenty busy!

It’s often nice being surrounded by people whose normal life revolves around all the same stuff as us. You can talk without explanation about medical issues or equipment. You’re not speaking a foreign language, you’re not a novelty. Sometimes though I feel compelled to break away from that and prove to everyone out there how actually we are just like them and that the world needs to learn to understand my child. I shouldn’t be feverishly clinging onto people who understand her, more work needs to be done to include and understand people of all abilities. Sometimes I need to pull away the safety net and not assume that people are either unkind or don’t understand.

I half joke half don’t constantly with people “you can’t ever leave us!! I’ll lock you in!” if i even get a hint that they may be planning to change job. It’s just another facet of our life that we have no control over. It’s never personal when someone moves on, but it’s hard. People are allowed to retire, to move on, to have their own lives! But it doesn’t make it any easier. In the last year we have said goodbye to so many people who have known Amy since she was around 10 months old. Sure, we’ll see them around still, and I wish them all the best, but I do miss them and I’m sure Amy does too. So long did we spend teaching Amy those people’s names whilst they form tgheir own unique bond with her.

So to anyone who works with families like ours and cares – we see you and we are grateful. I know we aren’t always the easiest to work with. Our highs are high, but our lows are also very low. It can be so exhausting.

I know you feel our frustrations at so many things. I know that it impacts you too when things are bad. I know that you desperately seek change in the system to help families like ours. I know that sometimes you feel powerless to help one minute, and determined the next. We go through that daily too. I know that you must jump the same hurdles as us, be bound by the same red tape as us. I know that when you clock off for the day you don’t necessarily switch off. You probably ruminate just as much as us, going in circles over it all. Thank you for being with us, for however long that may be.

The 19th of July marks Changing Places Awareness Day.

My twitter feed was awash with posts much like the ones I see myself post. Posts praising these facilities, those that were angry and frustrated that they aren’t in more places. And those celebrating that the world is starting to change for the better with regards to accessibility.

With each year that passes, these facilities become even more important to us.

Amy is 7 now. The days have long since passed that we can place her on a baby changing table for a change. I remember cringing as you see the table struggle under the pressure of her movement, even though she was just under the weight limit.

I am at that point now where we go to a “disabled toilet” to find that I can’t even maneuver her chair into the room. How is that right!? Days out are now planned around changes. I don’t want to change her on the floor of the van. my back can’t take it, and it isn’t fair on her.

I can’t imagine, as a privileged able bodied person, going anywhere and being told that the toilet facilities aren’t for me. There would be outrage if this was the case. So why should it be any different for people with mobility impairments? 

To me changing places represent dignity, hygiene and comfort. 

It saddens me still that such a facility is a luxury and not standard. It shouldn’t feel like a huge treat when we are able to access something with ease. Instead we are forced to either resort to something less than ideal or even dangerous, or to simply return home and isolate ourselves.

I was astounded yesterday by some of the statistics that Changing Places posted. Did you know that only 55 museums/galleries and art centres in the UK have Changing Places? Only 18 pubs and restaurants across the country are registered with a Changing Places toilet. And this is the saddest one for me – only 1% of attractions have a changing places toilet.

We are fortunate enough to have been to a few zoos with the right facilities. It makes such a huge difference to the day. It’s reassuring, it allows us to spend more time (and money!) there; it enables Amy to know that she is just as important as everyone else in the world and that her needs matter. 

Have you ever sat down in the exact same position for 3+ hours?

I’m not sure I have.. Not without having a little stand or a stretch. The longer I sit the more I ache. It isn’t good for you to sit down all of the time. Changing places allow Amy an important stretch. Quite often on days out I’ll start to get what I call chair guilt. Obviously we love Amy;s chair and it’s how she gets around and accesses the world… equally, position changes are important. Otherwise why would we spend so much time doing physio, stretches, standing frame time etc. it’s important for her for so many reasons. 

Sometimes when we hoist her out of her chair and lay her down, she is stuck in a seated position. Her body’s weight has been putting all of that pressure on her hips and spine. Her tight muscles (also known as spasticity) are locked, and it can even hurt her coming out of this position. The relief on her face when she realises she has freedom to roll onto her side or stretch is monumental. So it isn’t just dignity and hygiene we gain from these facilities, it’s comfort and relief too.

I am under no illusion as to why there is such a distinct lack of these facilities. I’d say the main one is money. Money is the reason for so many things. On top of money it is space. And third, I suppose it’s either ignorance or not caring. Prior to having Amy it had never occurred to me how wheelchair users navigate the issue of toilets. I had naively assumed that people could self transfer and use grab rails. Or I had perhaps also assumed a lot of people would be incontinent and maybe have a urostomy or stoma bag or something.

A grab rail and a little extra space isn’t enough for everyone.

For us we need a level access/height adjustable changing table/bed, a hoist (preferably H tracking), and lots of room for a big wheelchair and medical equipment. For others they may need a height adjustable sink, substantial grab rails surrounding the toilet etc.

A lot of people probably don’t want to think about it… but we are all one accident or incident away from becoming wheelchair users ourselves. More babies are being saved and growing to develop complex needs. We have an ageing population which comes with reduced mobility for some. There are so many reasons why these facilities are needed. I still can’t believe the local hospital doesn’t have one, but then I am told that only 93 hospitals in the UK have changing places.

I remember watching a video about a girl who had become a wheelchair user and was going on nights out with her friends. She realised on her first attempt that actually most of the good bars in her city had steps into them and no other access. I remember that look on her face when she realised that she would either have to go home, or find somewhere else and make everyone change their plans. (thankfully she had good friends and they went elsewhere). But it made me realise how we all see the world through a different lens.

Through Amy, I view the world completely differently. I don’t expect every single building to have a Changing places.. Though obviously that would be fantastic. But I do expect things to change from where we are now.

I look back and wonder how families like ours coped before. I suppose the answer is that they stayed home? Or just had to crack on as best they could.

We recently bought a second hand massage table that folds up. So if worse comes to worse, we can lay Amy on this somewhere. We don’t have a portable hoist yet but I am guessing this will be added to the already vast amount of things we pack for a simple day out.

I have lost count of the times I have written to big companies about installing these facilities. I’ve had meetings with MPs. I don’t want to be someone who complains about something and does nothing about it. I have probably made something of a nuisance of myself to the local council and our local hospital. But if we don’t raise these issues how can we ever expect change?

Shoutout to all of the places out there that are showing everyone that they deserve the same level of comfort and hygiene as everyone else by installing Changing Places. I am very much looking forward to our local IKEA having them soon, as well as our science and industry museum. Amazing to see that list keep on growing.

I hope you like the picture I have chosen for this blog. I know it isn’t one of my usual “changing place photos” that I like to use. I was so happy when we found a ride locally with a wheelchair ramp on one of the carriages. Amy was a bit confused at first but after the first lap you could see her getting so excited to see us and wave again. Every child deserves to laugh on a train ride.

Tiredness. Sometimes I feel it’s all I ever harp on about.

Someone will ask “how are you?”, my answer? “I’m fine, just tired”. The person usually responds the same.

It’s a good answer to have in a way. It’s better than not being okay, or being outright demoralised and depressed.

Okay implies a sense of normality and routine that is not afforded to families like ours when in hospital for example.

“I’m okay” and actually meaning it is a luxury for me.

It’s better than “my anxiety is crippling me today”, “I’m so fatigued it has entirely debilitated me”, “my back is really hurting and I don’t want to move”, and other choice phrases.

The reality is, my child is 7 and doesn’t really sleep.

Some nights she will sleep fine and we are all surprised.

I find on those nights I’m still on edge, waiting for a medical emergency or for her to cry out.

It’s exhausting.

It reminds me of when you’re pregnant and everyone around you jokes “get used to having no sleep for a few years!” and “oh those night feeds!!

I don’t miss those.” Well fast forward 7 years, and feeding is a 24 hour thing here.

Feeding pumps don’t mind about waking you in the night.

Amy has no other way to communicate than to cry and shout.

So those nights of constant ups and downs are still very much a reality for us.

Most nights it appears to be a neurological reason she is awake.

Sometimes her brain just pings into on mode and gets stuck there.

We see her wrestle against her involuntary movements getting frustrated that her own body won’t let her sleep.

She is on a whole host of medications that I am convinced would knock out a whale.

Yet here we still are.

Other reasons can include seizures, retching and needing suction, stuck in an awkward position, tubes tangled round her, feeding pump occlusions, entire outfit and bedding change needed due to leaking pump or full nappy.

Every time you enter the room you’re not sure what you’re going to be faced with.

Some days I pray to whatever out there that she isn’t stuck upside down, sometimes my back just can’t take swizzing her back round.

Amy’s doctor recently said to me “find a medicine or cure for children not sleeping and you’ll be a very rich lady!”.

Medicines help her get to sleep, but even then we can endure hours of seizures, hair pulling, lashing out, kicking and hitting before she is able to arrive in the land of nod.

It’s frustrating for everyone involved.

She goes to bed really early.

We have tried so hard to keep her up, we’ve tried everything.

But come 6pm it’s like someone has flicked a switch.

It’s quite isolating at times as it means that in non pandemic times we aren’t able to go out as a family in the evening.

Any attempt at doing this would result in self injurious behaviour, meltdowns and seizures.

It does make me sad.

I love being home but I would also like the option to go to firework displays, or the cinema, or just anywhere everyone else gets to go in the evening.

It’s easy to become resentful and depressed about it.

I have to remind myself constantly that this isn’t what Amy wants either.

No one actively seeks to be unhappy. 

Recently more so than ever we have felt the effects of the lack of sleep.

This morning Amy’s eyelids were swollen and under her eyes black with exhaustion.

She sat in her chair rubbing her eyes and looking generally unwell.

We haven’t had overnight respite at the respite centre in over a year.

It makes me realise just what a difference those nights made for us.

People would ask “what are you doing with your overnight hours?” and I’d laugh and say sleep. 

I do hope that one day things somehow improve. Sleep is so important for everything.

You can do all the exercise, all the healthy eating, all the mindfulness and meditation – but without sleep life is so much harder.

I suffer already with anxiety and insomnia some nights and find myself angry that she is asleep and I’m not.

Last night, just as I had got to sleep, she woke up.

So today I am sporting one of those tension headaches that feels like a tight band around your head. 

There is little support really for lack of sleep.

There are medications for everything, though I am learning that it isn’t an exact science.

You can have epilepsy and still seize on meds.

You can have muscle spasms and still experience intense pain on muscle relaxants. You can have sleep meds and still be awake all night.

So much of our life is laced with this hypocrisy and desperation to achieve a more bearable normality.

Each issue we tackle, a new one will pop up and replace it.

No sooner have we resolved some complex gastro issues – and an epilepsy themed issue will emerge.

It’s a constant cycle of trying to manage these very complex health issues whilst also running on empty.

Amy presently can’t communicate what is bothering her and once upset it is very difficult to reason with or placate her.

I sometimes envisage myself in her position.

In bed, unable to sleep, and two people appearing at her bedside oblivious as to how to help but are her only option to get what she needs.

She must get so angry and frustrated with us as we bumble around querying pain meds, is the room dark enough, maybe there’s too much background noise, maybe she has an itch she can’t scratch.

Maybe she just wants to be alone? Or maybe she wants to be held?

Do we stay or leave? Whichever option we select usually involves failure and her continuing to cry if not gets even louder. 

It’s easy to beat yourself up over it and blame yourself for not being able to meet your childs’ needs; I just hope that Amy knows that everyday we are trying our absolute best.

I’d love to look back on this piece in years to come and have found better ways to help her communicate and to have got the bedtime routine to be a less traumatic experience.

I’d love to sit by her and read stories together, or for her to have a little kiss on the head and drift off into a sound sleep.

But for now that isn’t our life, we just have to keep trying.

Of all the milestones or developmental stages whatever you want to call them – the toileting aspect of this journey never really bothered me.

What bothers me however, is lack of accessible changing facilities, and also the low amount of prescribed nappies/pads people are given.

I accepted a long time ago that toileting in the “typical” sense was not going to be on the cards for us.

It really is no big deal.

My child is fed 24/7 by a feeding pump so expecting her to be able to control bowel and bladder movements never really came into it.

I would never entirely rule it out, never say never all of that.

I know it isn’t the most glamorous of topics for a blog, but it’s an important one. 

The result of this is that I am now “that” mum.

The one who will mention and write to companies/places querying their lack of facilities.

There is no popularity to be gained from making such demands… These facilities require space and money, two things that aren’t easily come by.

I don’t like how entitled and self righteous I can act, but if I don’t, how can we ever inspire change? 

Change doesn’t happen from idley wishing things could be easier.

Change happens through spreading awareness, writing to those in power, signing and sharing those petitions.

I have been impressed and humbled on social media by how many people recognise the importance of these facilities that aren’t in our situation – because they have listened and been made aware.

That’s all it takes and we can’t give up.

Big companies and councils – whoever is in charge…. They often cater to the majority.

Forgetting of course that they themselves, at any time in life, could also need those facilities.

It isn’t until you are in our situation (or know someone who is), that you realise the importance of hoists, level access, changing tables etc.

Just because we aren’t easy to cater for doesn’t mean we should be overlooked.

I was horrified when our town underwent a large regeneration and a Changing Places wasn’t included in the plans.

I have since met with MPs and found out that thankfully one has been planned for when the local bus station is rebuilt.

Why this couldn’t have been done long ago I’ll never understand.

I even visited the new cinema and witnessed a group of people that appeared to be carers with a group of wheelchair users.

I overheard them discussing the toilet situation and deciding not to get drinks so that they would not need the toilet.

A person shouldn’t have to suffer dehydration so that they can spend time with friends! 

It shouldn’t feel like a special treat being able to maintain hygiene, cleanliness and dignity, however this is still very much the case.

I’d like to think that as time goes on, attitudes and awareness is changing.

More money is being put into funding changing places, and the map of available facilities seems to be growing.

You can’t underestimate just how important this is for so many people, it enables people to access the community, enjoy holidays, stay out for longer without anxiety about getting home and so on. 

Where we are, you get given 4 pads a day.

There is no fighting this number and there is no point trying.

I know in some ways we should be grateful as other areas have less or none at all.

We are told that DLA money is to be used for additional pads – but you’d be surprised just how far this DLA money is expected to stretch for all of the extras needed (tube pads, bibs, hospital car parks to name a few examples… it all mounts up).

4 pads a day for a child that is doubly incontinent and prone to cdiff flare ups which can at times mean 10 changes a day!

(My back hurts thinking about it!). The environmental implications of pads is something that troubles me, and I have toyed with the idea of researching reusable pads; but I weigh this up with the fact we do 2-3 washes a day of bedding and clothing and I just put it off for another day.

We recently purchased a second hand massage table.

A wise friend had mentioned this could be a good way to change/dress Amy when out and about or on holiday.

The table was collected and we decided to visit the seaside as this was close to where we collected the table from.

We arrived at the beach with no expectations and no prior research.

Imagine my surprise when I open the door to the disabled toilets and there in all its glory stood a large changing table and hoist!!

It was amazing.

I then opened the Changing Places app to discover this was the only one in the area for some distance. How lucky was that!?

This now firmly puts this place (New Brighton) on the map for us for places to visit.

Imagine if everywhere had this?! How much easier life would be.

I could probably write a book of changing nappy themed stories (I’m not sure how popular it would be!!), the times we’ve changed Amy on the ramp of the van, the time we nearly broke a baby changing table from the wall because of the weight limit not being clear, the times I’ve binned whole outfits due to the severity of the situation.

The laughter and tears I have shared on days out with other friends whose children require pad changes at an older age. 

I definitely took for granted how small she used to be, as she has grown it is getting harder and harder to stay out for full days.

I often joke “what did I even talk about before we had Amy?!”, the same can be said for how much I can talk about wee and BMs.

Prior to having Amy, any nappy talk would have me retching and leaving the room, and now I feel I could deliver a lengthy Ted Talk on the topic!

I’m not sure whether I should be recoiling in horror at myself or giving myself a round of applause for overcoming squeamishness.

Amy is only 7. She is a very tall 7 and I can just about lift her still.

If we are lucky enough to have her as an adult, I wonder how on earth we are going to do it.

Even with hoisting, her movements are severe and dressing her is often a two people (or more!) job.

I do worry about the future. Quite a lot actually.

How we will keep her safe. How we will keep her clean and comfortable. How we will cope when we go somewhere with inadequate facilities – do we just not go? Do we stay home? How will our backs be 5 years from now?

The changing table is also important for a stretch.

We have done some lengthy car journeys where we have deliberately stopped at a service station that has a changing places.

The main goal is to make sure Amy’s legs don’t lock up and ensure she isn’t in too much discomfort.

Sometimes we get her out of her chair and she comes out stuck in a sat position and winces in pain when straightened out.

The long term effect of stiff muscles and bad positioning doesn’t bear thinking about.

So I am always thankful of the opportunity to let her have a good stretch.

I know myself how much it can ache when you stay in the same position for too long and for Amy it is so much worse.

She wants to explore places and see everything, but she also needs the right equipment.

I am often tempted to buy a mobile hoist too and then between that and the massage table, more options are available to us.

But where does it end?!

You could just keep buying more and more equipment to try and make life easier and it costs a lot and takes up space that we don’t have… so really the problem lies in the community not having enough facilities.

Have you had any similar experiences? How is it in your area? Do you get nappies on prescription without a fight? I’d love to hear other people’s stories.

I won’t be able to lift her forever.

I won’t be able to lift her much longer. That hurts.

Both physically, and emotionally.

I realise there will be those parents out there who are still able to carry their 16 year old up the stairs, and to you I take my hat off! 

But that isn’t us.

Amy’s movement disorder is characterised by constant unpredictable and very strong movements.

Every transfer brings both danger and discomfort to both involved.

There is of course the added risk factor of the two feeding tubes that can’t wait to wrap themselves around any piece of furniture they can and cause emergency button changes.

It’s hard to explain really.

But having a non mobile child makes me want to be able to lift her forever.

I don’t want to rely on hoists.

The world doesn’t have enough hoists, and if I agree to hoist her from now on – it isolates us further from the outside world.

It’s a tough pill to swallow that she isn’t my baby anymore, she is a growing child.

She is only going to get bigger.

Holding her is a nice physical thing we can do.

With all of her harnesses and straps it’s hard to cuddle her when she’s in her chair.

I love the feeling of holding her close and carrying her; but it isn’t sustainable.

People gasp when I carry her – they can’t believe how she is almost as tall as me.

Their gasp is usually followed up by “oh my goodness, watch your back!”

Leaning over her bed to dress her each morning has me grunting and groaning like an angry walrus.

I especially struggle now to lift her from her mats on the floor and into her chair. 

From about the age of 9 months I’d say it has been an almost constant onslaught of new equipment arriving, being measured for equipment, equipment being adjusted and so on.

Initially this was incredibly overwhelming.

Where would we keep all of this stuff? Will it ever calm down? Will we ever not need all of this stuff? 

It is a huge learning curve.

I remember confiding in one of our specialists and saying “I really wish she could sit up unaided” and I think they misinterpreted me as their response was “oh don’t you worry, we’ll have her sitting!”

Naively I took this to mean that one day she would sit up unassisted and was thrilled.

I imagined our house without all of the seating, I pictured holding her without having to work with/fight against her stronge extension reflex and dystonic movements.

7 years on and the equipment is bigger than ever and continues to grow. 

Gone are the days we could just lift her into a bucket swing, or leave a pram in the car and just carry her (along with various medical equi[ment!).

I can’t believe I used to complain she was heavy back then!

Holding her now can mean a black eye, a nose bleed or a fat lip.

Changing her nappy can mean kicks to the face.

She is getting so much stronger as she gets bigger; her limbs hold more weight than ever before.

It takes time to adjust to how things are likely to look in years to come.

It’s hard to imagine that her next growth spurt will render me unable to perform any transfer without hoisting.

My problem with hoisting is this.

Amy is like any other child in that she never likes to be in the same spot for long.

If she were mobile I am confident that she would be in every room, on every piece of furniture 100s of times a day.

She relies on us to perform those transfers and help her navigate her way around the world. Hoisting takes time!!

Every transfer will need to be warranted and carefully considered.

Some days she goes in her chair and within a couple of minutes is crying and shouting because she wants to lay on her mats on the floor to then want to be sat on your knee on the sofa.

Our day is often made up of many transfers.

She has an expectation that if she wants to be elsewhere, then she should be, imminently.

It must be so frustrating relying on someone else to anticipate what you’ll want next and I want to be able to be there all the time and keep up with the demands.

I was once told she isn’t safe to hoist alone.

When Phil is at work I will have no choice but to do these transfers by myself.

We have had several different sling assessments now to try and minimise the risk of her throwing herself out of the sling or causing one of us injury.

It surprises me that a small person can cause so much destruction!

Unfortunately, she doesn’t have any awareness of danger.

Dressing her involves rescuing her several times from the edge of the bed and manoeuvring her to safety.

She cannot be left alone on her mats on the floor, nor can she be left unattended in her chair as she does things like rip hair out or cut her face and neck.

So I anticipate that when I do eventually bite the bullet and begin to hoist, I should probably get round to working on my fitness levels and improve my reflexes!

I’ve received several warnings from other parents and also our team that I need to be careful.

To protect my back. To hoist every time, not just sometimes. They’re right.

They’re the ones who have had the slipped discs, the back problems, the inability to care for their child whilst they recover from injury. 

I go to sleep many nights promising myself that tomorrow I will start hoisting her.

I also promise to eat better, drink more water, complain less and so on.

But it’s easier said than done in the cold light of day!

We are lucky enough to now have hoist tracking in two rooms in our house.

We have carers here that use it regularly. It requires two people really to do it – to control the hoist, and another to ensure Amy’s safety and prepare where she is being hoisted to.

Phil recently bought an inflatable bath.

We have a small wet room and miss baths dearly.

Yesterday Amy went in it for the first time. It was the longest she’s been calm and without music/iPads for a very long time.

She kept doing beaming smiles at us as if to say “this feels amazing, thank you”.

It was such a beautiful moment.

It then made me sad to realise how hard it had been to get her in and out of the bath and that this isn’t something we can feasibly do in years to come.

There is no prospect for hoist tracking in that room, and it’s too small for a portable hoist to fit in.

It’s bittersweet making these memories.

I sometimes wish we could just win the lottery and build a huge purpose built house with tracking and level access facilities in every room.

Because she isn’t going to change, but the environment around her needs to.

I’ll do it one day, I know I will.

I’ve been told that often parents like us often don’t start hoisting and continue to lift when they shouldn’t.

I know I’ll need to start breaking this habit to cut corners, as long term it won’t be good for any of us.