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

My baby just cares for me

I’ve often thought about the idea of being cared-for as I get older. I already use a personal assistant to help me out with all sorts of things both at home and out, and also to allow me to be able to parent my own children. As bleak as it may sound, assuming no cure for CMT is found within my lifetime (fairly unlikely I would say), then I can’t see a time when I won’t need a PA. But what about the thought of my own children caring for me as they get older? This idea gives me a particularly angry and frustrated feeling right in my gut. Worse than this, for me, is the idea that people will ASSUME at some point that my children will be young carers for a part of their adolescence and possibly adult life.

Now, I need to say here, that my views on child carers are purely my own, born out of my own experience of being a disabled person and then of course a disabled mum. Many people may have their own views on whether they think being a young carer is a fair and desirable way to live, but I’d hazard a guess at the majority of the population not really having any personal experience of this. Other people’s lifestyles and choices are not my concern here.

My concern is my own children, currently aged four, and 16 months respectively. Are they going to be pressured to thinking that they have to care for me when they’re of a capable age? Will they think they’ll have to help me get dressed or put my hair up for me before they can go out and ride their bikes? At what point does me asking Amélie to pass me something that I can’t reach from the floor, become her being ‘mummy’s carer’. It fills me with dread, confusion, nerves, anxiety, a whole load of other emotions and I wish it didn’t. What is worse is that I’m beginning to feel like I’m already asking my daughter to do things for me that other kids wouldn’t need to do for their mums. For instance, the four of us went swimming recently and whilst we were crammed into a pitiful excuse for an accessible changing room (think ‘disabled toilet’, and then…just stop thinking, because that’s all it was), I asked Amélie to pull my socks off for me. She was changed already and had been swinging off the grab-rails so I thought, a bit like a delinquent terrier, she needs a job to occupy her for the next few minutes. So did that constitute the start of her career as a young carer? Does she need to go on manual-handling training?

I forget where or when exactly it happened, but I remember once dropping my phone in a supermarket or somewhere, when Amélie was about two years old. I gestured to the floor and said “can you get mummy’s phone for me please?”, and at that moment a lady walked past as the cute little toddler passed the unidentified companion in a wheelchair her mobile phone, and said “oh that’s lovely, she can be your carer when she grows up”. My first reaction was to politely smile and return the jovial laughter but inside I felt my body tense up and I wanted to scream “no f*cking way, absolutely not”. I didn’t have children to provide myself with reliable live-in carers.

Children are annoyingly selfish anyway. Not a good trait in a personal assistant.

I guess the thought of your kids having to care for you in your old age when they themselves are past middle-age, is an entirely different thing. I think it’s kind of a given that as your parents reach their final years you make the decision to help them out yourselves in order that they wouldn’t then need to reside in a care-home. People kind of expect that to happen, and it is okay. But when a person, like me, has disabilities which start much, much earlier in life, it just seems unfair and unjust for people to assume your kids won’t even reach adulthood without having been a carer for a portion of their childhood. I already get unnecessarily worried that when Adult Social Care (shudder) conducts their annual review of my care package (yuck) they’ll see my children as young and capable teenagers as an easy way out of providing a monetary solution for me to pay for my own care. My partner is my carer part of the time. My PA provides care at other times. I don’t want anyone to ever tell me that “wouldn’t it just be easier for the girls to help you?”. No it wouldn’t be easier. It wouldn’t be easier on anyone.

I want my daughters to just be my daughters. Not mummy’s carer. Not a young-carer who might feature in a charity campaign watched by thousands of people feeling sorry for their lack of freedom and childhood, not forgetting the overwhelming sense of responsibility. I don’t want those roles to be reversed. I am their Mummy and their carer. They are my babies

Until I am old and senile, in which case I will call them Deirdre and John.

@shopgirlygm

I’m not going to steal anything. Promise.

I used to love shopping. I could never get bored of it. My stepsister Charlotte and I had a commitment to shopping like no other. As young teenagers we would get on the bus in the morning from Helston to Truro (the metropolis that is the capital of Cornwall) and spend all day traipsing around the cobbled streets and routing through the sale-rails in all of our favourite high-street stores, not a care in the world. We’d stop for lunch in Burger King, and get the bus back home in the early hours of the evening, ready to showcase our shopping loot to our respective mums, who were by then best friends (weird, yes, but totally normal to us). That is, of course, providing the Truronian bus company had stuck to their published promise to provide an Easy-Access bus when we arrived at either stop. I think they were under the impression that disabled people in need of ramped buses were just asking for the jolly fun of it. In reality we can all get out of our chairs, fold them into a tiny pocket like you get on a cagoul (kagoul?) and saunter up the steps of the bus exclaiming ‘I was just feeling lazy, I don’t really need the wheelchair! One return ticket please’. Anyway, bus rants are meat for a whole other blog post, (I do indeed have some tantalising and gripping stories involving bus journeys. Contain yourself please).

Those were the good old days. I loved shopping.

These days, I’m close to divorcing myself permanently with the activity of going shopping. Our relationship has hit a rocky patch, we just don’t have the chemistry we used to have. It’s not shopping, it’s me.

When I’m shopping with someone else, I don’t feel quite so uneasy but when I’m alone I get this overwhelming sense that everyone is looking at me, wondering what I’m going to buy, wondering why I’m looking for fashionable clothes, wondering if I’m a fake and am going to steal something.

It is paranoia, I’m sure of it. I’m pretty sure people don’t think I’m about to steal something. But I carry my handbag on my lap with my hand on it so it doesn’t fall off, and because I have to look down at the floor to ensure I’m not going to flatten a small child, I can’t help but think I just have a suspicious look about me.

I am however, fairly convinced that people might be scrutinising my shopping in children’s clothing or toy departments. I know, I must be buying a present for my niece or nephew, or a friend’s child. Everyone buys nappies and toddler-sized knickers for their friends’ kids, right? Er, no, I’m pretty sure they don’t. Those duties are usually solely a parent’s role. Which makes for more wondering in the nosey minds of other shoppers and store staff. I couldn’t possibly have my own children. Surely! I probably don’t even have a uterus!

Ridiculous aren’t I. ‘Get a grip, Lizzy’ I hear you say in your head, or out loud, whatever. Yes I probably am coming across as a paranoid idiot right now, but what has changed as I’ve grown up that has selfishly caused me to loath my favourite pastime? I have just been into Mothercare on an unsuccessful hunt for nappy-liners, I couldn’t find them so I had to ask a lady-staff-person to see if they had been put somewhere else. I then went to look at kids shoes, all the while wondering to myself who and how many people are wondering why I’m in Mothercare at all, and if the shop assistant might be under the impression that the nappy liners might be for my personal use, seeing as I had no children accompanying me!

The other reason I am beginning to hate shopping is because of the other shoppers. People should know better than to choose to be out shopping at the same time as me. They get in my way and then realise they are in my way and leave me a three-inch gap to squeeze my wheelchair through. Or they are walking in front of me down the street and decide to just stop walking. What is the deal with that? You wouldn’t do that on a motorway and just not expect to get driven into. Or even worse, they are not at all in my way and start apologising profusely for being in the way and ruining my entire life, and ‘oh sorry sorry sorry, I’ll move out of your way dear’. Fine, move however you like. Do the Macarena. You weren’t anywhere near me.

This year, the majority of my Christmas shopping will take place in the bustling aisles of the Amazon warehouse. Carried out by someone else.

Regretfully, Bah-shopping-humbug.

“Taking steps is easy, standing still is hard”

Or should that be “sitting still is hard”?

My youngest daughter Geneviève is now crawling and pulling herself up on anything and everything to be standing and moving, more mobile, more independent. I’ve been crawling for years, I don’t know why it’s taken her entire life so far to learn what she sees me do every day. Okay, she was only 9 and a half months old when she mastered it, I’ll let her off.

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I always wondered what my children would think of their mum and how I do things differently to other people, other mums. As I’ve said before, I know that Amélie knows that I don’t walk, and that I use a chair. But does she know why? Does she query in her little head why I hold my fork with both hands, or a pen with both hands, why I crawl when I’m not in my chair. I wonder if she knows that I could walk, but can’t now. Would that scare her? (this is going to be full of rhetorical questions, apologies in advance).

And now my second baby has started her own little journey to becoming more able than I am. Not that I would wish for anything different, but it does sting a little to think they’ll never know me as ever having stood up. I have one short home-video clip of me, rather precariously, walking out of our house and down two steps aged about 11. I’d like to show that clip to my girls one day so they know that I have once and for the majority of my life (for now) been non-seated, and to enlighten them a little to the assortment of abilities they will observe in people as they grow up.

Every time I do something that one of my children needs me to, and I mean something mundane like opening a packet, or helping my three year old take off her clothes, I do wonder whether at some point Amélie (and Geneviève at a later stage) will start consciously comparing me to other parents, other people, and their lives with other children’s lives.

Amélie has, before now, gotten frustrated at my lack of ability in helping her do things, I am sure. It hurts, but slowly she has started accepting that I can be of use to her in some of the same physical ways that her daddy is. She has recently started offering me the sleeve of her top when she can’t pull her arm out, knowing that I will grab the edge of the fabric with my teeth and let her pull her own arm out. Like that’s totally normal. Oh crap, I’m an assistance dog, aren’t I?

It’s little things like this that make our family so vastly different from everyone else’s, despite our best efforts to remain blended in with the rest. It’s when we’re with others in the public domain, and when my girls are of the age where they know that people do unfortunately make assumptions and come to irrational conclusions about others, that I really fear for what they might go through. This is something that I’ve already been preparing them for, I hope, by just doing what I need to for them. Regardless of who’s watching.

Will they have to ‘defend’ my capabilities, my ability to talk and make decisions, to look after them, to be just as much a parent as daddy, when their new friends, or ferociously curious peers start interrogating them in school? There’s too much to think about and wonder. An endless black hole of questions with no answers until the time comes.

Until then, then.

Only a bit useful

My partner has been away abroad with his dad (man holiday) for the last 10 or so days and during this time I’ve had an assortment of family (2 whole different people) coming to stay to help me. It always seems to involve a lot of preparation and planning when this happens, although aside from Tom’s occasional work trips, his father-son trip away is only alternate-yearly, so in reality it’s not a big thing.

All the same, I love having people come to visit. I just never feel totally comfortable having to rely on other people to come and stay with me just because I can’t look after myself so to speak, even if they have previously fulfilled that role in years gone by, such as my mum. Mum has known me for…erm, *most* of my life I believe, and so is pretty comfortable with knowing what kind of things I need assistance with. Only it’s not the same as it used to be.

I am majorly less independent than when I lived at home pre-uni, I can’t do many of the things I used to be able to do and nothing makes that more of a reality than being in these couple of weeks where I become the daughter of the household once again, being looked after by my mum. I start to question and analyse my every move, wondering whether I’ve always crawled from the bedroom to the bathroom on my hands and knees, and then remembering -no, this is new in the last few years. Before that I could walk upright on my knees holding on to available furniture and walls, and before that I could still walk in bare feet, carefully. Just picturing the backwards transition of my movement-abilities in my head… Oh god, am I reversing evolution? Am I going to turn into an ape and start carrying my babies on my back?

I then start to wonder if I’d tried harder, could I have held on to some of my old abilities? I hope not, is the answer. As my muscle wastage has progressed since childhood, things have got a lot more difficult and/or dangerous and so quickly learning new techniques is the only practical way of getting on with things without just laying on the floor like an upturned turtle yelling ‘hellllp, I can’t hold A hair brush the same way I used to!’ I used to be right-handed for writing and using cutlery, that got too difficult so now I use both hands at the same time. I’m not ambidextrous as such, multidextrous maybe? I quite like that, a little more comic-book heroin. Bidextrous? Hmm. I’m not sure.

There was a time where getting in and out of the bath was nothing too taxing. Now it has become something else. I don’t possess a new-age sci-fi hoist type contraption (we are intending to move house sooner rather than later) so first time I showered after Tom went away last week was when my mum and our family friend were here to stay. Getting me out of the bath was quite the spectacle. It wasn’t exactly far removed from a Search and Rescue winching operation and I was half expecting to see a helicopter hovering above the house full of confused looking air-medic type folk. The operation was carried out in stages, successfully, each one with me being the only naked person amongst 3 grown women hanging out in my bathroom. I have come to the conclusion that being dressed doesn’t make it any easier being the person in need, so I think I might move to a commune and chill with some other wobbly naked people.

I’m 27 now and I still consider myself a novice to the whole ‘wheelchair-user’ thing. I’ve only really used a wheelchair most of the time since aged about 17, which is maybe why I’m still so acutely aware of people’s reactions to seeing someone in a wheelchair when I’m out in public. I’d like to think most of my family still see me as just ‘Lizzy’, not ‘Lizzy, the one in a wheelchair’. Unfortunately, and I suppose I am probably just as guilty of this presumption at times, I can immediately see that people see me as a wheelchair before my actual person. Amongst our family and close friends, we are allowed to make jokes about my bind to the chair on wheels and what purpose it serves in my life. I think making jokes makes it more acceptable that this is what my life is now, and when people know me I am also happy for them to take a stab at risky disability satire. What I find a bit unnerving and a little surprising is moments when strangers attempt this, not knowing at all how it might be received by said person-on-wheels. Luckily for the gentleman at the beach at the weekend, he came out unscathed. Mostly. When my stepdad was loading bags of towels and picnic food onto the back of my electric wheelchair he made a joke about finding a place to stow his other shoes and some beer. The man, who’d been sat there for all of three minutes with his dog, said “good idea, what else would she be useful for otherwise?” 

My mental jaw dropped a little. I quickly retorted with “and providing grandchildren”, in a distinctly defensive tone with the agreement of my Mum and stepdad, but I don’t think he even heard anyway. Bugger. Oh well, stereotypes aren’t that bad, are they? 

  

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On the beach, not being very useful.