I have debated putting this in writing as I would never want my son to feel responsible in any way but caring has triggered health problems for me which are probably never going to end.
Years of lifting my son’s wheelchair into the car. Years of lifting Adam into the car, onto the toilet, into bed, onto the floor, onto the swing, lifting the equipment used to do his therapies and supporting his body as he works at getting stronger have all taken a toll.
Carrying him through soft play centres, up all those endless steps to the big wavy slides, enabling him to paddle his feet and do whatever his friends were doing didn’t help either, but they were all essential activities for a small boy.
Bending awkwardly to enable him use the toilet when out and the “Tetris-style” actions required to transfer a person from a wheelchair to a fold-out bench, to a toilet chair and back again all in the back of a VW transporter that you can’t stand up fully in certainly took their own toll.
A year ago I was left struggling to walk due to a prolapsed disc. I had lived with back problems for a long while. I had seen doctors, had physiotherapy and taken a range of prescribed painkillers which either didn’t touch the pain or would leave me zonked out and unable to do anything.
Then, one afternoon, it just went completely.
The only way I could walk even a couple of steps was to use Adam’s wheeled toilet chair as a walking frame. I was not an elegant sight!
I tried a chiropractor. Within three sessions the pain was manageable and I was walking without the toilet chair!
I wasn’t “better” but it was definitely less bad! Seeing a chiropractor up to three times each week is not cheap but it kept the pain in check and it has enabled me to make progress. I am still seeing them and I credit my ability to walk now to my chiropractic team and the wonderful team of family and friends who helped keep us going.
For 10 weeks I could not drive the car at all. For several weeks I could not look after Adam at all and it was several months before I could take over his care again. For almost a year I could not push his manual wheelchair at all. Even now, one year on, I cannot push him far and only on level ground.
One year on, most days end with pain. Sometimes “just” low levels of pain, sometimes intense levels of pain which stop me sleeping. Some days I dread hoisting my son because I know it will hurt but his needs have to be met.
Hoisting equipment doesn’t make it easy, it just makes it possible.
Some days I am so pleased to see my husband return from work, because it means I can have a small physical break from hoisting, bending, supporting wonky joints and generally battling with an octopus. It feels that way sometimes! He doesn’t just have physical disabilities, he also has some learning disabilities and is on the autistic spectrum. He struggles to understand my needs, my emotions or to have any idea that battling against the person who is trying to dress you is not a good idea. It is truly amazing how strong a person who cannot stand or walk can be!
Today I had one almighty spasm down my leg. It passed and I thought it was a warning sign and that I needed to rest. Unfortunately, it wasn’t a warning, it was the start of intense pain from my right hip to my calf.
Sitting hurts.
Standing hurts.
Walking hurts.
I have a feeling that lying down is going to hurt too.
It seems unfair to write it down. I would never want my boy to ever feel that he was in any way responsible for my health problems.
The truth is, I would do every single thing all over again just to ensure that he had those years of happy smiles and being able to join in.
Now, though, we do need a bit of help.
Some of these things we are never going to do again. I am never going to hold him up to paddle his feet in the sea again. I am never going to take him through a big soft play centre again. I am never going to lift him to a slide.
Yet we could be able to look around the zoo.
We could be able to watch a film at the cinema.
We could be able to eat lunch out.
We could be able to go to see the animals at local attractions.
We could even manage a few rides at a theme park, we have many willing volunteers!
What we don’t have is fully accessible toilets. The addition of a ceiling hoist and a full sized changing bench would make everything possible.
Changing Places toilets and Space to Change toilets change lives.
Every local attraction, supermarket, restaurant, cinema, theatre, National Trust property, (just to name a few) has the ability to change lives.
Willingness.
That is what is needed.
For a long time businesses simply didn’t know what was really needed. Out-dated guidance has been used for too long.
Disabled people need accessible toilets, not disabling ones.
I am so pleased that most places automatically consider having wide doorways and level pathways but that investment is going to waste if people with disabilities still can’t visit because the toilets are not accessible.
So, please, when you are out and about this summer, think about all those who cannot enjoy the attraction you are at. Ask the management to look into installing hoists and changing benches for disabled people.
If you are a business owner or manager, please understand how it would feel to be Adam. Please understand that he is representative of hundreds of thousands of people.
Please care.
Ordinary Hopes 
This hits home hard! My little girl (5.5 yrs) is still liftable, but I’ve always had lower back pain and I know my lifting time is limited. As you say, if they facilities aren’t there, if you can lift (even if you shouldn’t) you do, but when you can’t 😦
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It is heart-breaking. The back pain I can cope with. Adam’s hurt is a whole other thing and I can’t accept that.
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At nearly 6 my son is already becoming so hard to lift. The changing tables for babies, we were once able to use, are no longer usable. We often have to go home or to the boot of the car, where anyone passing can see him being changed! It’s just ridiculous that more places don’t have these facilities.
I’m so sorry to hear about your pain. I too suffer from back and hip pain with all the lifting and I don’t do this anywhere near as much as you, so I can only imagine how it affects you. You do such a great job and manage to stay strong as well. It’s an inspiration to see what you do and achieve x
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I know fully where you are coming from as myself and my husband have spent 14 years doing the same thing to make sure our son Declan doesn’t miss out on one single thing and are really glad we did because no child should have to miss out on any experience due to their disabilities.. I began with really bad back pain approx 4 years ago and it started with a really bad episode where I could barely walk or sit down and the pain was unbearable and had a CT scan and was told I had a condition called spinal stenosis which is basically bulging spinal discs and can get really serious.. I have pain most days now in my back, sitting, standing or walking, some days are worse than others and I hate the pain killers because they just make you feel awful.. Swimming with our son has become really difficult and don’t go as often as we’d like to because of all the lifting and no proper areas to get him dressed and undressed ready for the pool and half of the time we have to get him dressed in public where the lockers are.. I hate him having to miss out on things and still do the lifting in and out even though I know I’ll suffer for it myself, luckily on some days out my husband does all the heavy lifting in and out of his wheelchair.. It would make life so much easier if it was compulsory for everywhere to have accessible facilties for everyone and all disabilities and just take some of the pressure off to make life that bit easier. You don’t have anything to feel guilty about writing about how you feel as unless you spell it out in black and white about the reality of caring for a child with disabilities otherwise no one really knows the daily battle.
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I can totally relate to everything said here. My advise to s y younger mother knowing thru have any type of handicap child. ” To get in shape NOW”. I’ve been at this for 27 years and I do have to admit, I wish I would have gotten in better shape years ago because I’m definitely feeling the pain now.
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I have worked as a carer in the education sector with children physical handicaps for many years 31 in all until the 90’s hoists were unheard of and I feel your pain,I have ongoing back problems which are affecting my daily life I advise all parents to follow good manual handling practise and ask for advice if you need to ,you need to be fit and healthy to care for your loved one so admitting it’s getting tough and taking steps before you yourself have back issues is vital. It’s not a weakness it’s a strength to say I need help now.Good luck it’s too late for older carers like myself but newer younger carers must look after their back health.
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I can’t even begin to imagine how difficult it is to lift your boy. My mum was my Dad’s carer for 10 years and you could see the affect it had on her health.
You’re an amazing mama! And I’ll make sure I talk to management at places we visit! It seems so silly that toilets are not accessible!
#bigpinklink
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Thank you. If every person tells someone else the message will spread.
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Thank you for sharing your story and helping to raise awareness. Your post have definitley opened my eyes and make me understand just a little of what you must go through on a daily basis. I have never thought that there were so many levels of accessibility and that it is not just the instalment of sliding doors. And if by Installing hoists and change benches, we are improving accessibility, then we should. #bigpinklink
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Thank you. The need to use the toilet is surely a pretty basic one which we all expect to have met?
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I think at the least every mall should have one at least
. Every small town should have one paid for by the town (open to the public 24 hours a day, because when you are travelling what do you do?) I get that it is a big commitment for space and money for small businesses to have one.
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It is so very frustrating to me how many people will look at a parent of a disabled child talking about how hard it is (physically/mentally/emotionally) to provide care, and will claim that means they think the child is “a burden”. We figured out how hard caring for someone 24/7 is on the body and mind when talking about elder care, and built an entire industry around supporting those families, up to and including no-guilt-trip residential care… *WHY* can’t we get it into our heads that the same applies to families with disabled children?
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Reading posts like this just makes me realise how badly carers are treated, both back “home” in the UK and in my home for the last 10 years Ireland.
You save the health service thousands every year, yet nothing is done to help you.
Adam is fortunate to have you and I’m sure would never hold it against you were he to read this post.
Thanks for sharing, and hopefully you will find some relief to your pain.
#bigpinklink
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It should be a basic human right. The fact that disabled toilets do not adequately cater for their users is atrocious! My mother was a career for my father for years. She stopped going out in the end because it was too hard…such a shame #bigpinklink
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So many people just stop going out. My son is only 10 but some days he will choose not to go out rather than face the worry of not being able to “go” when out.
He chose not to attend a workshop with friends at the National Maritime Museum, Falmouth, because he knew he would have to leave early to use the toilet. He asked if they had a toilet he could use and was upset that they didn’t. So he chose to stay at home.
After many e-mails, the Director of the museum has been in touch to say that they are looking into it. Hoping he means it!
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How awful for you. The more this is publicised the more pressure we can apply. Thank you on behalf of those who can’t thank you for highlighting this!
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I understand completely where you are coming from – that feeling of frustration when you can no longer do everything for your child, when you can no longer help them to experience everything you want them too. And how important everything that helps you to continue is.
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I wish I knew several years ago just how hard it would get. I was so sure that I would still be able to do everything necessary.
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It’s another level of acceptance isn’t it? I try to look at it as my kids are becoming the independent people they need to be to survive in the big, bad world. Even if they didn’t have their particular needs they would still have to learn how to do that.
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And a year on here I am nursing a painful tennis elbow which is causing me excruciating pain because I have to lift William – he’s *only* 22kg but we only have a hoist to/from bath/bed at home so everywhere else still requires lifting which is a nightmare. Maybe now I’m injured I can get more hoists – although I need to get used to using them too!
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Hoisting equipment needs to be in place so much earlier. It should not be something which only happens after injury.x
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You shouldn’t feel bad about penning your thoughts, you’re not blaming your son for these things at all x
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I don’t think you should ever feel guilty for being upset about the physical and mental toll caring for someone requires. It is hard work!
I completely agree that more places need to invest in better toilets for those that have additional problems using a bathroom. I don’t think we have anywhere in my local town open to the public that has fully accessible toilets which is really upsetting.
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The state of disabled toilets is really shocking. Many a time I’ve had to change my Autistic stepson on my coat in the toilets.
It’s terrible that you are suffering the physical and mentail effects of caring for your son. Much more should be done to help carers look after themselves.
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Poor you! I wish facilities around the UK were better, indeed the world. Good luck with making a change. I hope your pain becomes more manageable swiftly. Best of luck. Kate x
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It is disgraceful that the facilities are not upto standard. Everybody should have the basics of accessible toilets available to them x
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This is so heartbreaking. I only can image how difficult and frustrating sometimes it can be.
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I think it’s important you share this side of being a carer, the extra support you need businesses to consider will only be made aware of if you shout your corner.
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