No, she is not a child carer

Yesterday, I had to take my 6 year-old daughter to A&E because she had hit her head at school and cut it open. On the phone to the school receptionist I was told they’d called an ambulance because her behaviour had changed and she was very pale. I panicked, and left work as quick as I could, bursting into tears as I went down in the lift. What exactly did they mean when they said she had a cut to her head?

I got to the school ten minutes later, about 30 mins after she’d hurt herself.  She was very quiet and pale looking, and didn’t want to talk much. A teaching assistant was stood outside waiting for the paramedics to arrive, except nobody arrived, and instead the ambulance control centre rang my number an hour later, to triage her over the phone, wanting to speak to Amélie herself as well. She didn’t want to talk to the stranger on the phone, and he asked me more questions, then decided she didn’t need someone to come out to her and that we should take her to hospital instead. Quite why they couldn’t have let us know that an hour before, I don’t know. Anyway, we got to A&E and were seen by a triage nurse relatively quickly, and then by the doctor after another wait. But it was a nurse practitioner who saw my daughter after the intitial consultation by the doctor, who said something which frustrated me. I had been quite relaxed after getting Amélie to hospital and knowing she was in good hands and we knew what was going to happen. But the nurse practitioner asked Amélie a few questions just to check she could remember things ok and she was otherwise well after the head-bashing. One of her questions was about at home, and whether she  ‘helped look after Mummy’.

I see. So we went from ‘aww poor girl, she has cut her head open, let’s make her better’ – to ‘aww poor girl, she has cut her head open AND she MUST be a young carer as well, brave little thing’. She asked me if Amélie was a young carer to which I replied ‘no, she’s not’, and she said ‘no but I’m sure she has some caring resposibilities to help you, do the school know, are they aware she is a young carer?’, and so on. She told me it might be good, for Amélie, if the school were aware she might need to help me sometimes.

SHE IS NOT A YOUNG CARER! She is a 6-year-old little girl who happens to have a mum who’s in a wheelchair. The school know me well enough, and they also know I have a very caring and supportive partner who works full-time, and I have a PA who, surprisingly, fulfills the role of ‘helping Mummy’ when I’m not with my partner. My PA was sat right next to me at this point. My daughter doesn’t need to look after me.  I look after her.

Yes, she is able to fetch things for me and she can grab her baby brother out of the bathroom when he’s gone to explore the toilet, but as far as I’m concerned that does not constitute a young carer, who needs keeping an eye on to check she’s managing her complicated life okay.

If I wasn’t a wheelchair user, I’d still get my kids to fetch the baby wipes when I can’t grab them, or to run and close the stairgate when their brother is about to venture upstairs, and they are nearer than we are. I know able-bodied bodied parents that are lazier than us!

It makes sense to get kids to be helpful in their day-to-day life, and know that it’s just a nice thing to do. I hope they are helpful to their friends and teachers alike. My kids are pretty independent too, possibly because I can’t do everything for them that most mums can and  although daddy takes care of most of the physical side of childcare when he’s not working, I think they’ve learned useful tasks earlier than most kids would happen to. Amélie makes cereal for her and her sister, she can make drinks and loves that she can make her own sandwiches when she wants to. She has even taken to flying unaccompanied to Spain for a weekend get-away once a month in a rented villa she found, whilst backpacking in her gap year between nursery and primary school. She really needs the respite from taking care of her entire family.

Of course I’m joking, but on a serious note she does not need to be my carer. Young carers are amazing, and what they do for their mums, dads and siblings should never be taken for granted. And indeed, they might need someone to check-in with them every now and then to make sure things are working and that they have time for themselves. But I have my own PA, so that won’t need to be the case with our children. They’re just regular children and until I’m old and losing it, they can have their childhood.

I think the nurse practitioner may have realised that she’d gone a bit too far with her assumptions, as before Amélie had her head stitched up, she came and sat next to me and asked about my ‘medical history’  (like every parent in A&E with their child gets asked, right?!) and said that it was great that I just got on with life and that I wasn’t really disabled as I don’t let it affect me. She clearly hasn’t read this blog!

@shopgirlygm

facebook.com/haveyoutriedwalkinglately 

10 Signs You Love Parenting 

Disclaimer: please read 10 things you can’t stand about parenting’ if you’re not in a positive parenting place right now, like me most mornings. That fluffy focus-on-the-good parenting stuff needs balancing out a bit.

 

1. Spending ridiculous amounts of time just looking at your baby/child. You know their every detail to the extreme, and of course they are the most beautiful thing you’ve ever seen. You often feel smug when you look at people who aren’t your child’s parent (so pretty much everyone else except your partner) and gloat inwardly that they don’t get to look at your child every day. You regularly feel the urge to ferociously approach strangers crying “look at her face, she is beautiful!” because, they didn’t seem to be paying much attention.

2. Feeling that aching proud feeling in your chest when they’re so scared to swim in the swimming gala but they do it eventually. Even though they came last, they did it. All the other kids were probably doping anyway.

3. Watching your kids hug each other. It’s quite a skill to have made a little pack of humans whom you hope will confide in each other when they’re bigger and always have a friend who knows them so well. This morning I overheard my two eldest discussing how they liked ‘their baby [brother]’.

4. Wanting to bottle the smell of your baby’s head. I know it’s a cliché but if one of my kids is sat on my lap it’s quite likely that I’ll have my nose in their head (that sounds normal), which is fine until they notice and tell you to stop sniffing them.

5. Loving the power that the iPad or sweet foods has over other humans. I am God. You can make them tidy anything with the promise of an ice lolly.

6. When their favourite song goes from ‘Twinkle Twinkle Little Star’ to something over 20 seconds long and becomes ‘Paranoid Android’ by Radiohead, like my 6 year old daughter (which Daddy is very proud of).

7. Watching them learn to read, or write their own name. The months of choosing their name suddenly becomes a lot more serious. (May have set the bar quite high for our daughter Geneviève, poor kid.)

8. Sitting on the floor and having your baby crawl over to you and rest their head on your thigh. Loving that you’re what they want right now, not a brightly coloured, obnoxiously noisy toy in the corner.

9. Spending weekends watching them run around in the sun and play in trees, or even just giggle at cartoons. This is their childhood. Remembering what you remember from your childhood and realising that this is that, for them, right now. Wanting to make it brilliant.

10. Having made some freshly squeezed brand new people that are largely part of you, but are also separate beings and wanting them to be a bit like you, but also have a better life than you. You know they will probably make the world a tiny bit better.

 @shopgirlygm

10 Things You Can’t Stand About Parenting 

Disclaimer: read ’10 signs you love parenting’ for if you need to be reminded that you do love it really.
1. When someone misidentifies the gender of your baby. You may like to think you’re quite a liberal parent and want to buy your girl a red truck for her birthday, saying ‘fuck you’ to gender stereotypes, but it’s still a little infuriating when your dainty little girl dressed in a blue dress and flowery sunhat gets told she is a handsome young man.

2. Mornings when you feel your stomach acid start to bubble up due to the rage caused by the amount of times you have to tell your daughter to not just stand there in yesterday’s pants for a further 23 minutes, but actually make movements – any freaking movements at all – to get some additional kind of clothing on. And also, when you ask what on Earth they’ve been doing for the last half an hour they seem to have no recollection of their activities. Astonishing. Like it’s been erased from their memory. Which reminds me…

3. Sometimes, they remember everything. Apart from important stuff. But they do somehow remember that last week you promised them they could have packed lunch at the end of this week, and now it is Friday, 8:27am and you now have an obligation to rustle up a nutritious picnic for the clever little thing.

4. You want to be a fly-on-the-wall at school lunch time and have the power to poke other kids when they say something mean to yours. You hate the idea that your daughter is sad and you’re not there.

5. Dressing babies. Due to my disability I can’t do this myself but I’m usually the one trying to pin said baby down while others try to insert him into trousers. They should use this activity to torture prisoners – see how long they last with a baby (okay maybe just a doll) who, just when you’re getting leg #2 into place, they retract leg #1. Leg #2 then becomes leg #1 and the ordeal is repeated about ten times. It’s the same with sleeves and shoes. You all end up screaming and you put your son in a dress and be done with it.

6. They do not want you to sleep. Babies are arseholes during the night and that’s all I have to say on the situation.

7. When you’re supposed to cook something nutritious to fuel their growing bodies but you’ve just got home and it’s 6pm – fridge tapas will have to do. You boil up some pasta, add cheese and a bit of sandwich pickle, some sliced up cold sausage from the weekend BBQ, and throw in some frozen mixed veg to pretend it’s healthy. They don’t eat it, and instead have some questionable yoghurt from the back of the fridge for dinner. If they get the runs it’s their own fault.

8. Meltdowns which occur outside the home. Nothing screams “look how shit I am at parenting!” than when your child decides to lie down on the floor in the frozen section in Morrisons. You’re a mum in a wheelchair and the verbal attempts to get your child to stand up are not working. Then the Parent Samaritans rock up and offer help and you just want to scream “You can fuck off too. Leave me alone.” in their face. You’d quite like to just ignore your child and leave them to their tantrum as you might at home, but unfortunately it is frowned upon in the public arena.

9. Morning wake-up calls before 7am when you’re not getting up early to go on holiday. I love that my kids want to snuggle in bed next to me in the mornings but when they are 3 and 6 years old, it is 5.48am and within 3 minutes they are arguing about not having enough space or any covers, you regularly scream “it is MY bed, it’s not even 6 o’clock, bugger off”. You load YouTube on your phone and some sickly sweet video of some girls unwrapping Frozen-themed Kinder Eggs, and send them on their way. You’ll deal with the post-YouTube comedown later on.

10. After all the other trivial, albeit shitty stuff that happens day-to-day as a parent, you have the overwhelming sense of disappointment that you can’t give them everything you want to. You can’t promise the world will be nice to them always and you can’t promise nothing bad will happen, and that sucks.*

*Although you can help them to be strong, loving and open-minded people, and that might help with those things.

@shopgirlygm

The morning routine with three kids

I sit leaning over the sink with a mouthful of white foam shouting “HEEF HIME!!!” as loud as I can whilst trying not to spray toothpaste everywhere.  The children do not respond to such demands. It is playing time, not heef hime. Brushing their teeth is really not important right now, they have still got to dress Supergirl, even though she wears the same fucking outfit every day and she’s only just been undressed.

“HEEF HIME…HAN ANYONE HEAR NE?” That’ll be a no then. I spit out the remaining toothfoam and shout even louder, well as loud as I can with my croaky morning voice. “HELLOOO? WOULD ANYONE LIKE A BISCUIT?”

“ME!! I WANT A BISCUIT!” come the stereo replies as they elephant up the stairs still without shoes or socks on, despite having been downstairs to finish getting ready for a whole 9 minutes.

“So you can hear me! I am pleased! You’re not having a biscuit though, I was just checking your ears worked properly, which I have concluded they do, so here you are. Now brush.”

Two faces look at me like I’ve just cancelled Christmas, and I feel smug. I win. They do not. The older child then finishes brushing her teeth and goes for a lie down on my bed. That’s normal isn’t it. I finish brushing the younger one’s teeth and wheel into our bedroom to see the 6 year-old looking rather relaxed amongst the unmade bed, and I feel it is necessary to question her whereabouts.

“Why on Earth are you lying down in here? Are you finished getting ready? Have you found your shoes from the depths of the shoeboxfromhell? [They are actually on her bedroom floor in clear view of the doorway from where I saw them, but I want her to discover this for herself] You haven’t even got any socks on. Then you need to brush your hair.”

The younger child then feels the urge to perform her ritualistic hand-grabbing involving her baby brother who is crawling around in their bedroom, unaware although, really fully aware that doing so will mean he falls on his face.

“LEAVE him alone please. If he’s crawling you can’t just grab his hands, how many times do I need to tell you that nugget of information?”

“Ohhhwa. Don’t want to.”

“‘Don’t want to’ what? I haven’t offered you anything, I have told you to leave him alone or he’ll get hurt. You really need to go and find some shoes now.”

Younger child then seems to melt into the bedroom floor, flailing about like beached octopus, ensuring her feet go very close to her brother’s face, enough for him to try and eat her toes, at which point she shouts-

“NOOO, GET OFF MEEEYUH”

You’re on him! You get off, just stand up and he won’t be able to eat your feet and then you will be able to choose yourself some shoes, that’s handy isn’t it.”

I sit near the door frame incase I need to bang my head against it. Older child is standing next to her shoes and does not know where they are.

“Look down.”

Child looks down to discover the elusive shoes that have been there for over 12 hours, and then grins at me with an alluring coyness that I do not find cute.

We eventually make it downstairs, ten minutes later than would be helpful and the sloth-like children have yet to choose a coat. The younger chid has decided to drape herself over the shoe box, definitely sure that she cannot find her other purple shoe. I wheel past her and glance into the shoe box and sure enough, the shoe is literally under her hand. Well no wonder she couldn’t see it, her hand had blocked it out from all vision and discovery. Understandable.

“It is right there. I can see it. Under your hand. Lift your hand up. The other hand. *Oh for fuck’s sake* The OTHER hand, you only have two. See, now put it on.”

“Why do I have to?” she ponders, at least I think that is what she says. It’s hard to tell what a 3-year-old is saying when her face is squished against the shoe box and the moaning tone of voice would seem like I’ve asked her to complete a 1000 piece baked-bean jigsaw puzzle.

“No no you’re right, you can of course go to nursery with one shoe on.”

“Don’t want toooo”

Mummy gives up, and plans a mental timetable by which she will have consumed the children’s Easter egg chocolate before the day is out. They’ve brought it on themselves.

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Being Mum: Rehearsal In Progress

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It’s Mother’s Day in the UK today, and there’s lots I could talk about when it comes to being a mother.

I have three kids, ranging in age from 6 years to 7 months, with  3-year-old in the middle. When I was first pregnant with child #1, it was exillerating, exciting, scary, and new. Nothing had been experienced before except through observing other pregnant people around me, but nothing was to prepare me for what was really to come. Six and a bit years on, I’m still pretty much winging it at times, with the occasional moment of knowing what I’m doing.

With my eldest when she was a baby, I worried about everything – whether she had fed enough, whether she was putting on weight quickly as she was a tiny baby, whether I was doing the right thing by feeding her and putting her down, and letting her cry – because she’d fed and her nappy was fine so what else could she need at 2am apart from sleep? She surely had to understand as early as possible that cuddles and attention in the dark hours was not going to happen. Some people I spoke to agreed, and had similar sleep routines, and some had different opinions on how much attention a baby needs after feeding and changing had been sorted. I was pretty sure we were doing it right, although it was nightmarish at times and we were both shattered. But when we considered the alternative – co-sleeping or something similar and in the attachment aisle of the parenting shop. We got though the baby stage and came out the other end with a baby who slept quite reasonably by the middle of her second year of life and we had our nights back.

Then we had the sensible idea to bring another screaming human science project into our house. ‘We know what we’re doing….maybe’, we both thought at times, and we often heard people say something like ‘oh you must know what you’re doing if this is your second baby!’ Nor necessarily true but I could kind of see where they were coming from. With the second baby some things are very familiar, and some things come back quite easily like breastfeeding, which my second daughter took to like a baby to a boob, with no issues whatsoever as opposed to the first time around where I stressed more than anyone needs to, over getting her to latch on properly, being scared by hospital staff that she’d need ‘topping-up’ with formula in ber first few hours of life as she had not had many long feeds from me. Nowadays I know that that particular bit of advice was unnecessary and I needen’t have worried about her not feeding enough right from the word ‘go’. Of course babies need to feed, and to increase their blood sugar, but considering that their stomach at birth is literally the size of a small marble, there really was no need for me to cry over the fact that she hadn’t guzzled all 2oz of formula after a 5 minute feed from me, only for her to throw it all up everyhwere after. I probably would have too if I’d been made to drink about 5 x the volume of my stomach in one sitting. So with daughter 2.0 this part of parenting was a lot less stressful. Don’t get me wrong, the times they throw up an entire boob of milk before bed when they’re bigger, is definitely a pain in the neck, and there were many rimes when I’d worry that she had not eaten enough, and slept too much, but for the most part, a lot more successful.

With daughter #2, I was also a bit more easy going when it came to sleep. I’d still want her back in her own bed after most feeds because it is my bed and I am selfish – but in the very early days and for the odd night thereafter if she spent most of the night in our bed, co-sleeping as they call it, then that was that. She’s 3 now and has been in her own bed sleeping perfectly normally for at least 2 years, only stopping our bedtime feed at 2.5. I knew we had approached sleep better this time around, but I do have a lingering guilt that in fact with our eldest daughter, she was not sleeping at all badly – she was a baby and babies wake and need a cuddle. The problem really was that we had been conditioned to believe that from a few weeks old babies should be able to sleep solidly. Complete rubbish.

Now I’m on child 3, this time of the male variety and pretty much every situation is sprinkled with a generous layer of salt, rathet than a pinch. He spends the first 2-3 hours in his cot and then camps next ro me with my boob in his face for the remaining 6-7 hours. We both sleep better than if he was going back into his cot after every feed, there is minimal night hour crying and despite my bedsheets smelling more sicky than I’d like, it works for now and I know that he will sleep just as well as his sisters in the next year or so. So whilst the reality at the moment is that I share my bed with a sweaty 20lb boy most of the night, with his Daddy the other side of me, I know that reality changes very often and soon it won’t be like that.

Six years on from my parenting birthday, I have come to realise that children are extremely cute as babies, even when they grin at you with your nipple clamped between their gums. They are cute at times over the next few years, interspersed with moments when they might behave like a complete A-hole, but also have the capability to make you feel more proud than you thought was biologically possible, like when you leave them at their school on the first day of term.

How on Earth did we make it this far? I cannot for the life of me keep a house-plant alive, and I even managed to mess up growing my daughter’s pumpkin seeds that she won in school – but somehow, between me and my partner, we have managed to grow three complete children. They’re exceptionally good looking, fantastically irritating at times, but they’re ours, and we grew them.

We are not by any stretch of the imagination experts in raising babies despite having three insisting that they live in our house. Each and every day I have moments where I shout at them to get their shoes on instead of routing through the bag of never-played-with tat destined for the charity shop and I think to myself ‘shit, that was harsh, I’m really crap at this today’, or times when all I want to do is watch a BBC drama containing strong language througout, and these two girls just sit there on the sofa looking at me like ‘wtf are we going to enjoy about this?’ and I have to consider what is more important – my anticipation of finding out who killed Kay in ‘The Replacement’ or my darling children’s quality time with Mummy? Of course, it was spending precious moments drawing stickmen with the girls and laughing at their farts – that is until I got bored and tasked them with sorting out the shoe box so I could finally watch the last 3 minutes of this crime-drama really quietly and sat ridiculously close to the TV so the children didn’t start repeating obsceneties.

I’m not sure if I’m done having babies, if we might like to add another in a few years. Either way, the baby stage take:3 is rapidly reaching the end of the first year and whilst a relief, it is also tragic and sad that there will be a time when he has his last feed from me, and one day he too will no longer need to ride on Mummy’s wheelchair because he’s tired of walking. I’m enjoying being a mum, even if I don’t always feel like a mum when I can’t do something for them, and even if I have a habit of spending the first few months after habing a baby being a miserable slug. I know now that that is ok, and every othe mum should know that too.

You are allowed to be a miserable slug, shout at your kids ‘KEEP YOUR TEETH TOGETHER FOR CRYING OUT LOUD’ when brushing their teeth, and feed them hot cross buns and popcorn and claim it as a reasonable dinner. You are shattered, look like crap and lose the will to live every hour pretty much. But you are their mum and they won’t remember all this rubbish stuff. They’ll remember you reading them ‘What The Ladybird Heard’ without even needing to see the book because you are a seasoned pro, and they’ll remember getting into bed with you in the morning because you are the perfect bookend to their wake and sleep routine.

They probably won’t remember the times you measured their height and weight, and wiped away their snot for a photo so they’d sell quicker on eBay.

HAPPY MOTHER’S DAY.

@shopgirlygm

facebook.com/haveyoutriedwalkinglately

Pimp my ride (my shopping trolley).

Last week was one of the busiest I’ve had in a long while in terms of things regarding disability, and complaining which I enjoy doing.

On Tuesday I met with Marc Radforth from the German international trolley manufacturers Wanzl. He came down from the Midlands to meet with me in a local branch of British supermarket Sainsburys, who of course use their shopping trolleys. We talked about the current options when it comes to choosing and using a trolley to carry out your shopping fun, which is normally something one undertakes in a mindless fashion – person approaches trolley park, person selects trolley at the front of the queue of trolleys waiting in line hoping to be picked and taken for a spin, person turns trolley around and walks around supermarket putting items in said trolley. This is fascinating right? Please keep reading.

Sounds very simple and straightforward, and normally  the only problems arising from trolley selection and use, are things like getting a trolley with a wonky wheel, and trying to insert a 3 year old into a tiny folding flap of plastic seating when they insist on not walking, and you’re not allowed to leave them tied up outside anymore. Then they moan about the seat being cold or wet or too hard. You try saying to them “What do you want, a bloody goose-down recliner and a pina colada?” You tell them children in third-world countries don’t even have such luxuries, but even that doesn’t make them feel guilty enough to stop whining. The problems don’t stop there though. Well for most people they do, but I’m not most people. My difficulties and needs don’t follow any textbook guidelines, even ones about wonky people. Usually wonky people are taken to a supermarket, pushed around and helped in their shopping needs, but if they happen to be a parent (really!) and wish to be a parent whilst going shopping, their child would have to be transported in a trolley/pushchair pushed by someone else. There are no options for baby/child-friendly trolleys for parents who also cannot walk themselves. Currently, my option is this: put baby+carseat in the raised-up ‘BabySafe’ trolley (I mean, someone else will do this for me as I cannot reach) and then other person pushes trolley around with my baby in it whilst I travel behind/in front/next to the trolley rather than being in control of it myself. Onlookers don’t know I am this baby’s mum and inside I’m screaming,’I know he’s cute, I made him!’

Wanzl’s ‘BabySafe’ trolley with generic European baby.

Wanzl read my Tweet about the trolley issues I have and got in touch with me. They said it would be useful if someone could meet with me to discuss my needs and possible future options. The good thing about a company like Wanzl is that from the meeting I had with them, it was very clear that they will go above and beyond the effort made by most companies to try and provide for all needs. But they can’t provide for this without someone telling them exactly what is needed and what is currently not available. We talked about the new lower-level Babysafe trolley that I found at Asda  and Marc said that this style of trolley was re-designed with the help of people on Mumsnet where it was mentioned that the tray for the carseat was too high both to reach and plonk a heavy baby and carseat on, and also to see over. I have been witness to my PA who is 5’8″ crashing into a wet floor sign that she couldn’t see whilst pushing the trolley. Luckily it wasn’t a toddler. The base of the new trolley was also brought up so it isn’t so deep to reach into. These trolleys are currently in Asda stores, with Sainsburys and other stores to follow suit shortly.

The problem I’m having is that even with improvements to the existing carseat trolley, and also the provision of other trolleys for parents to slot children into (just any child wondering aimlessly will do but parents tend to provide their own) like these:

Trolley with Trend baby seat.

Or these with a typical toddler seat:

Shopping trolley with folding toddler seat.

…I still could not have my child in the trolley that I’m pushing and be able to fit shopping in too. I often use baby slings but they’re not always practical when shopping. I get very hot whilst babywearing indoors and if you need to bribe your child to stop crying by paying them in biscuit currency once they come of age at around 7 months, then they need a place to sit. You might be thinking ‘isn’t there a trolley that attaches to wheelchairs?’, and you’d be right as these do exist at most large stores, and Wanzl have also improved these recently by making the attachment arms easier to operate for people who have problems with dexterity, like I do. Here I am trying out how these work and how I can indeed put a baby carseat in one of these trolleys. But it is unsafe as there are no straps, and although I have since tried this and know that the possibility of my baby falling out of both his carseat and the trolley is very low, that’s not what the trolley was made for and if we have an Earthquake in the foreseeable and he falls out of it, I’d very much regret using an unsuitable trolley. There isn’t a folding toddler seat either. And also, with a carseat/child in the trolley, there’s no room for my coffee grinder, my sledgehammer and my horse-riding jodhpurs to go when I’m shopping at Aldi.

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Here I am having the common knee-to-trolley-handle measurement taken.

During our meeting, Marc from Wanzl told me about a young man in Northamptonshire whose disabilities and requirements were so specific to him that they designed and manufactured a trolley just for him to use at his local supermarket (not sure what happens when a different supermarket has an offer on beer or something but that’s besides the point). So some companies are willing to help even if it doesn’t bring them mass orders and profit in return.

We came up with quite a few notes on what I would need from a trolley. A good sense of humour, likes long walks on the beach, that sort of thing. But mainly just a trolley that I can affix to my wheelchair and have my child sat facing me. Wanzl use ‘eye-contact with parent’ as one of the advantages to their parent and child trolleys, so it’s appreciated that the child needs to be facing whoever is pushing them rather than being strapped to the front of the trolley facing forward, like an unwanted teddy bear on the front of a dustbin lorry.

After the meeting, I went over to the local Morrisons store (and survived) to look at their kids’ clothes, and on the way into the shop I came across these beauties monstrosities.  They looked like some kind of torture chamber from the days when disabled people were brought up in orphanages because they didn’t meet the perfect-baby expectations when they were born. I couldn’t see any Wanzl branding on them, so they’re off the hook for now:

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Really helpfully placed over the metal bumper rail too.

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‘Pick me, pick me!’ it screamed. ‘No, you’re hideously awful’, I replied.

I’m looking forward to hearing from Wanzl following our meeting, and seeing what ideas they come up with. It probably won’t be the easiest trolley to design, but in my head it looks something like a trolley+baby sidecar hybrid. I know they are willing to help though, and that is very encouraging. Hopefully it will be something that can be mass produced and used in supermarkets all over. There aren’t many wheelchair-using parents shopping at a supermarket at any one time (if we all go together people freak out a bit), so each supermarket might only need one or two of these trolleys available, which isn’t too much to ask of Tesco et al, is it?

Moving on from trolleys (I won’t be saying the word trolley too much more I promise), the day after meeting with Wanzl, I met with Andrew Sherwood from Marks and Spencer (M&S) after my ranting blog, this one, where I discovered that the breastfeeding room at the Torquay store where one can comfortably sit and feed their baby, was not accessible to me. Or anyone wider than this gap >______< it seems. So I whipped one out in the kids’ clothing aisle and fed Rafe there. When I met with Andrew, we went and looked at this room and even he couldn’t understand why it was so narrow, but he guessed it might be because the architects were trying to fit multiple facilities in this room for all sorts of parenting needs. Just no wheeled people. But I have since discovered, in Sainsburys near where I live, a similar ‘change and feed’ room with a breastfeeding area that again, I was too much of a wide load for:

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It wasn’t the most pleasant of nursing rooms anyway

So it’s not just an issue specific to M&S buildings. To the person who was holding the tape-measure on these ‘refurbishments’ – YOU HAD ONE JOB.

Some good news from Andrew Sherwood, whose role is Property Development and Facilities Management (improving access and facilities in M&S stores) he has said that they are always trying to improve things for disabled people whilst shopping. They have, where possible, tried to keep baby changing and accessible toilets separate, rather than people who need to use an accessible toilet having to endure the smell of 30 festering toddler poos, and numerous door-knockings when a parent desperately needs to change their kid’s nappy and you just want to have a wee in peace. They have also made it so that, if they have the space for it, they will have two separate accessible toilets with one being a left-hand transfer and one being a right-hand transfer. This may sound trivial to the average toilet-goer, but when most of your limbs don’t work properly, and you find transferring from chair to toilet on the right easier than on the left, it is such a luxury to be able to choose which toilet is easier, rather than struggling in the one toilet provided by  most places.

Andrew told me of the legislation and guidelines used when designing and providing facilities in buildings which should be adhered to by ALL architects so that people can expect the same level of ease wherever they go. As you can imagine, this is definitely not the case. I explained in our meeting that a common problem I have is that to be able to make use of grabrails and bars in accessible toilets, they need to be at a certain height for me to lift myself up on. And there are many places where I know I find it difficult to use the toilet either because the room is too small to turn my chair around in, especially if I’m with the kids, or the toilet is lower than it should be, or the grabrails are too high or they’re too far away. Just yesterday I was at a local hospital and went to use the toilet before my appointment and I couldn’t reach to lift myself up as the grabrail on the right of me was so far away:

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It might look like nothing, but this makes it really bloody difficult.

I fully understand that this issue probably wouldn’t be an issue for the majority of wheelchair users, as many people have normal use of their hands and upper body. But I don’t. If everywhere was the same so it was equally as easy or difficult wherever you go, there wouldn’t be that unknown when you go to open the toilet door and get that feeling of “oh great, I really need a wee but I’m not sure if I’ll be able to use this toilet, I might have to wait ’til I’m home”.

I think the problem is that most companies think that as long as they have a toilet with a bit of space around it, shove a changing table in there and twenty thousand nappy bins and a grabrail randomly attached somewhere on the wall, and an emergency alarm cord tied up so it can’t be pulled by an inquisitive child, but is actually out of reach to those who might need it and is now rendered useless, then they have done their job by catering for all needs and nobody should feel the need to complain.

Well it’s rubbish, facilities are mostly crap and badly maintained and hardly ever cleaned so you can see last month’s pee dried on the toilet seat because fuck it, it’s not used that often to worry about. At least there’s a toilet with a wheelchair symbol on the door eh?

Knowing you’ll be able to go to the toilet or choosing a trolley that you can fit your kid in and go about your shopping trip should be the least of my worries, I shouldn’t even need to think about it beforehand like most parents. But I do, and it means I often can’t relax or be fully comfortable in most places. Hopefully someday soon that’ll all change.

For now, Andrew Sherwood has asked for the doorway of the breastfeeding room in Torquay to be widened so that I can use it. He is going to make their architects aware of this flaw in their planning.

You didn’t expect someone to be able to write over 2000 words about trolleys and toilets now, did you? Next time I might provide a photograph of one of my favourite accessible toilets with no wee on the seat. Something to look forward to!

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Photos of trolleys are taken from Wanzl’s website. Other photos are all my own.

 

Have you used a wheelchair lately?

My guess is that, no, you probably haven’t. It’s really quite a fun and exhilarating experience so I thought I’d give you a factual account of what you’re missing. Any profanities are strictly necessary.

Having a sweaty bum and back for the entire time between April and November. For me this was especially awful this year as I was heavily pregnant. And being hot, pregnant and in a wheelchair brings a special kind of under-belly sweat that I bet you’re all jealous of. But being seated in a black chair constructed from man-made fabrics, nylon and sponge and not being to stand up and cool your butt down is just hideous.

People leaning on your wheelchair. There are only certain people to whom I have given special permission to lean on my chair if they feel they need to for any unforeseen circumstantial laziness. The rest of you, use your glutes. Seriously, you have plentiful bum, leg and core muscles which I’m quite sure have many uses, one of these being holding you in an appropriate standing position. Magical!. Use ’em or lose ’em. And while you’re at it, stop moaning about having to walk somewhere or go for a run to keep fit, you don’t know how good you have it.

I have eyes, ears and a brain. If I am unknowingly in your way, ask me politely to shift. It is never necessary or helpful to move a wheelchair-user who is a complete stranger, out of the way for your own convenience. This actually happened to me in a supermarket – an elderly man saw it as his job to move me slightly to the left so he could get to something on the shelf that he couldn’t reach. Probably denture glue. But I was actually quite stunned, as was my partner who then looked at this gentleman with utter amazement. Would he go up and lift someone’s leg to get them to step out of the way? I doubt it.

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The numb bum. Always a numb bum. (There’s a theme to this post isn’t there?!) You’d think after years of using a wheelchair I’d be used to it. However, each and every day I get an achey numb bum and have the urge to stand up and stretch my legs. But I’d have to quickly get back into my chair incase people thought I had been faking it all this time. Maybe it’s because I used to be able to walk albeit in an quirky fashion, so I know what I’m missing, but it never goes away. I can’t wait to get on the sofa at the end of the day to lay back and be in a position that isn’t a right-angle. Being sat down all the time also brings great joy when it’s raining outside (or inside). Your thighs face up to the sky and get drenched very quickly. A raincoat serves little purpose here..

No, we’re not all paralysed. Not everyone who cannot walk and uses a wheelchair is paralysed. Use your imagination for f*ck’s sake. Maybe my legs have been taken for use by aliens who move around their own universe using stolen human limbs and replacing them with useless, but very life-like, dummy legs. The aliens have immobilised me for their own benefit. Consider this a cry for help.

We weren’t all in a tragic accident causing us to lose the use of our legs. See above. Some people have experienced this kind of heartbreaking occurrence though, and I’m pretty sure some of the following applies to these people too. The question asked most often with the accompanying tilty-head of doom is “Oh, how did it happen? You poor thing! You cope so well though!” Oh crap. Do they want a biological breakdown of the faults in my Mitofusin 2 gene and how it has affected me my whole life, gradually taking my movement and independence, or will the simple answer “I have a muscle wasting disease” suffice?

Disease!? Hark! This girl is DISEASED! Step away immediately, we might catch it!

The jokes about women drivers and being in charge of an electric or even my manual wheelchair, never get old. In fact I’ve not heard enough of them. Please say more things like this so I can legitimately punch you in the face.

Last time I checked (which was never) wheelchair users did not feature on the list of banned or dangerous dogs. If you see one of ‘our type’ coming down the same side of the street as you and your little darlings, there is no need to yank your child out of the way, almost dislocating their shoulder in the process. I don’t bite children. They taste like snot and poo, and I live with three of them so really I’m ok with just rolling past you in a completely nonthreatening manner. But you’ve just made your kid scared of wheelchairs and people in them. Round of applause to you.

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Shopping and general wheelchair access woes. We’re in the 21st century with 3d printing and robots and cars that drive and park themselves. But we can’t work out how to make pretty much everywhere accessible to wheelchairs and have facilities for people who need them because of a disability. It won’t be cheap, but most things that are vital for disabled people aren’t cheap. But surely it can be done properly and not take decades in the process. Hopefully it’ll happen in my lifetime but I am doubtful. I mean, we must be quite a healthy, capable nation, or why would they not give more funding to local NHS care trusts and councils. Maybe disabled people are just moaning about nothing.

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The shitty wrists. You read correctly. And by shit I don’t mean my own or even humans in general. Dog shit specifically. People are idiots and lazy and perpetually leave their dog’s crap wherever it was delivered. Because who wants to pick up poo? Well not me and my wheels. And seeing as I don’t own your dog, or any dog for that matter, I do not want to find chunks of dog poo in the tread of my wheels and then the creases of my wrist/hand before realising what has happened. Some dog poos are highly stealthy and not obvious, hence why we sometimes wheel through them. No amount of Dettol spray and hand-washing gets rid of the horror. And here’s a picture because my teachers taught me to support my arguments with evidence:

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Any enquiries about trying out a wheelchair and experiencing all of this for yourself should be submitted via my facebook page or Twitter @shopgirlygm.

Check out another blog I love, and which inspires me to write about the crappy stuff more and try and illustrate the unillustrateable. Hurrah for Gin is hilarious.