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

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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

Has anxiety become fashionable?

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I appreciate this might be a risky article to write. Many millions of people suffer with varying degrees of anxiety, either for a short specific episode or a prolonged ongoing time. These people cannot help feeling anxious about certain things, it gets into the very grain of their being, day-in, day-out, and often therapy or medication is needed to learn to cope and manage the feelings and symptoms they exprience.

But lately, I seem to be hearing more and more people saying that they suffer or have suffered with some form or anxiety, for at least one stage in their lives. Maybe it is that these days, it is easier to ‘come-out’ as having anxiety, where it wasn’t before. It is widely known that people suffer from anxiety, depression and other brain-health disorders in silence, perhaps not even telling a doctor or family member through fear of not being believed, or being told to just “pull yourself together”. I say ‘brain-health’ as I truely believe and want others to recognise that mental health diagnoses are as much of a health issue as asthma or coeliac disease for instance. It’s just that although you can’t necessarily ‘see’ the problem, it is physically just as present as many other diagnoses. The problem is that if someone hasn’t suffered themselves, or there isn’t a blood test to cofirm the issue, then people struggle to believe it is most definitely happening, without the choice of the person it is affecting.

I might be one of the many who chose not to let-on about the anxiety I was experiencing after having a baby. I have three children and each time, I have treated the anxiety in different ways. With baby #1, it came as quite a shock. It was, I guess, part of post-natal depression to have anxiety like this. After having my daughter I’d feel so incredibly tense and frustrated by my lack of physical ablities due to my CMT neuropathy, that even though I knew exactly what my hands/arms could and could not do, I became severely affected by the thoughts of other peoples’ perceptions of my parenting and also about having to ask other people to do so much for my own baby. After all, nobody would do things exactly like I would if I could. I focused and obsessed over tiny things that were ‘wrong’ and everything seemed to make me want to lock myself in the bathroom and not have to ‘parent’ in front of others, especially those who knew me. With baby #2, I suffered simillarly for a few months before finally going to the doctor 4 months postbirth. With baby #3 I had the foresight to think ‘well this is probably gong to happen again isn’t it’, and even though I was absolutely rubbish at just sayong “hey, this is how crap and anxious I’m feeling”, people were aware a lot earlier and I was slightly better at normalising it, for myself and for others.

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So has it become less taboo to talk of your own serious anxieties, and by that I don’t mean being afraid of cliff-edges or big spiders – I mean things that are completely irrational, unexpected perhaps, and most of all uncontrollable to an extent? Or has claiming to have a severe case of anxiety become a get-out clause, an excuse maybe, to get out of things you’d rather not have to do? After all, people aren’t supposed to deny your anxiety, are they?

Are some teenage girls who would rather not play netball in school and have an excusing note from their mum, undermining the true experiences of the 15 year-old with crippling body dysmorphia who would rather jump off a bridge than have to show their legs off to fellow students and teachers? Is she going to be told “sorry, everyone has to join in”? Shouldn’t we be more lenient about what they can wear, or is it one-rule-fits-all?

I have always hated having to speak in front of groups of people. I remember even as a 7-year-old in Brownies, the moment when you’ve not long joined the club and you have to say the ‘Brownie-Guide Law’, I stood there and started crying and my mum had to say the words for me. Suddenly the idea of all-eyes-on-me was horrific. Since then I’ve detested it, it makes me feel physicallt sick and I will go out of my way not to do it even if it means being the only one who doesn’t play a part in a presentation. I get red-faced, my eyes start watering and I lose the ability to make the right amount of eye contact. However I also know that other people have it way worse than me, and cannot even speak to a cashier in the supermarket for example. So should college lecturers and workplace managers stop asking people to speak up in a group, because many people might be ‘too shy’, when really it might be only one or two who are suffering some form of actual anxiety?

It is difficult really, because whilst more needs to be done to help support those of us who are genuinely anxious and distressed about things that we really would prefer to experience, should we really label more and more kids as having anxiety because they haven’t got many friends or don’t want to say lines in tbe school play, and should we make physical education less integral to the curriculum incase school-aged adolescents feel embarrassed wearing a sports’ kit?

There is certainly a fine line between knowing whether to help somebody through anxiety by allowing them not to do something which might mentally distress them, and just saying “you’ll be okay, come on, let’s do this”. I worry that it’s becoming ‘cool’ to say you have anxiety, similar to when people say “oh I’m so OCD”, when they admit to not wanting people to get crumbs on their sofa.

What do you think? Have you had true anxiety? How have you treated it, and who did you tell?

Yours anxiously,

@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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The new addition to Trolley-hood

From one tweet after this shopping trip:
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To this:
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The wheelchair-parenting trolley is now established at Sainsbury’s Paignton! Make sure you share and tag any parents in wheelchairs (temporary or permanent users) who might need to make use of this. Hopefully other supermarkets will follow suit and these will be avaiable nationwide, and not just when people ask for one to be made. Keep the progress going by spreading the word far and wide!
Thanks to Wanzl and Sainsbury’s (Yalberton Road, Paignton) for making this happen.
#disability #parenting #accessforall #facilitiesforall #inclusion #shopping #disabledmum
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Access to life

Yesterday I wrote an article about Accessibility for DisabledGo, you can read the article below or click here to view it on their website.

Access to life….

For as long as I can remember, the word ‘accessible’ has been such a frequent word in my vocabulary. It’s not the most exciting or tantalising word, but it is a word that I can imagine most people only associate with a primary-school spelling test; ‘is it one S or two?’ Or noticing a sign on a shop door allowing ‘guide dogs only’, regardless of the shop staff’s own awareness of impairments.

The definition of accessible is that something can be reached or attained. How accessible is our society for the majority of people? I’d say pretty accessible – I’m not for a moment suggesting life is easy, but you finish school and go to the same college as your friends, you skip lectures to go to Burger King for lunch instead, and then you catch a bus home and watch MTV all afternoon while your parents think you’re at lectures. Then if you’re lucky, you’ll get good enough grades to go to uni pretty much anywhere in the country, and that means you could pick any course that you qualify for, knowing that the only test of your limitations will be whether you’re too hungover to sit an exam on a Monday morning.
But for someone with a severe physical disability, this isn’t how the stereotype goes. If you’re able to study what you want to in school (see my post about how this might not happen) you might go to college and study what you’re interested in, albeit with tedious roadblocks along the way, like whether the carer that college has provided for you will let you use the iron in textiles class, even though you’re 17 and know that you’re quite capable of not scalding yourself whilst ironing a piece of material. The attitudes aren’t always accessible, and stereotypes mixed with ignorance compliment this. Whilst the other students in your English Language class sit in groups of quickly-made friends, you sit at the edge because it’s the most ‘accessible’ table, as far as positioning a wheelchair goes. As far as feeling equal to your peers and always having someone to chat to about the coursework, sitting nearest the door in every classroom was not the most accessible place. Kids like to huddle in the corner together and laugh about what they’ve drawn on their maths book, they don’t like to be in the place where everyone can see what you’re up to. Uni isn’t always accessible either. Before I started uni, we had to argue with several of the accommodation team that the room wasn’t big enough for me to move my wheelchair around in, and as they had extended a room for another student in a wheelchair, we argued that they could do the same for me. Then at the end of my first year of uni, the porters tried to fine all 6 of us in the apartment for damage to the kitchen involving the fire extinguisher being taken off the wall, and one of the flat-mates climbing in and out of the window for convenience. Didn’t he realise there was a handy door at the front of the building? I of course denied any wrong-doing as far as kitchen windows and extinguishers were concerned, but I secretly quite liked that the uni had the audacity to try and charge me for it. Ironically that was quite inclusive of them. Either that or they just didn’t think and automatically charged us all. I’d like to think it was the former.

Like all teenagers, when uni finishes you have to think about growing up, which involves finding a job. Finding an accessible job is almost impossible for someone like me however, and despite having A-Levels, a degree and a post-grad qualification meaning I can teach early-years, I will always need a lot of help in any job I do. This can include someone to help me go to the toilet – even a so-called accessible toilet isn’t accessible when you can’t do your own jeans button up, and I don’t want to live in tracksuit bottoms when I have no intention of running a half-marathon in the same day. I recognise that this is a specific need that can’t easily be met without someone helping me, but to be asked to schedule your own toilet-trips when the local care-trust are working out how much personal-care you need for *toileting* (one of the most impersonal and ugly words in the world – at what stage of adolescence and disability does going for a wee become ‘toileting’?) is particularly inhumane and soul-destroying. I can’t describe the feeling of being thirsty and wondering if you should have a glass of water or cup of tea or if it’ll make you need to go again too soon, before your PA is scheduled to come back to you again. This is not an accessible way to live.

Neither is wanting desperately to go somewhere with other people who are able-bodied, and knowing that you cannot because the physical structure of the location won’t allow for it. I’ve been to newly built places and wondered how on Earth their accessibility-surveyors signed-off their facilities as meeting criteria. For instance late last year I was shopping with my friend and my newborn baby, and we went to the baby change/feeding room to change his nappy. They had a lovely comfortable and quiet area for breastfeeding mums, and out of curiosity I wheeled myself towards the door to look inside, only to find I could not get into the room. The doorway was unnecessarily narrow and there was no way it was regulation for either the modern or old-school requirement of doorway width. I then got in contact with the store, which is an internationally known brand, and then later met with somebody who tries to ensure their stores are inclusive of people with disabilities – even he couldn’t understand why the doorway was so narrow. This just proved that although the intention might be there from some areas of our world, the promises of being accessible don’t always stretch to something as simple as a breastfeeding room or a changing table that you can reach from a wheelchair. I expect the numbers of breastfeeding mums who also happen to be essential wheelchair users and who shop in that store, are so low it didn’t even enter the consciousness of the people who built the facilities to make them accessible from a wheelchair. However, the store has excelled in their idea of accessibility in other areas. Their accessible toilets are not only more spacious than I’ve usually found, but where possible there’s a choice of two rooms – one with a toilet on the left and one with a toilet on the right. Because guess what, people’s physical capabilities and needs are never the same as the next person with a colostomy bag or a wheelchair. Even something as simple as offering two layouts of toilet facility can make access to normal life, so much more attainable.

I could go on for days and days about accessibility, because it is not just about ramps or extended tap handles or braille on café menus (imagine that) it goes so much deeper, it is so vast and it affects just about everything. I’m lucky that the man I choose to share my life with is pretty strong and when we are faced with somewhere than I can’t easily access in my wheelchair, he will lift me out of my chair and into the restaurant for example, or he’ll lift my chair up so a few steps won’t stop us enjoying being somewhere. But it can’t always work that way and of course he’s not there for everyone else needing his muscular help!

So in order to make our beautiful world open to everyone who needs and wants to experience it, we need to look at what ‘accessible’ really means and who it affects. And then start the small task of making it right.

@shopgirlygm

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