food · Ritual food

Christmas puddings and memories

Today is the last Sunday in November, which is the day I traditionally (after 15 years I think I can call it a tradition) make my Christmas puddings. The number I make varies year on year but its never less than three. The recipe never varies. Its one that my mother wrote down for me fifteen years ago after I asked her for her Christmas pudding recipe to which she replied, “I don’t really have one, I just made mine based on what I remember Mam making”. But I nagged and cajoled and eventually she wrote it down. She always maintained it wasn’t as good as her Mam’s.

Fourteen years ago my husband and I were celebrating our first Christmas in our forever home and Mum spent it with us. I’d made a pudding but we didn’t eat it on Christmas Day, as I wanted to wait until the 27th Dec when my Granny – her Mam – and the originator of the recipe I had used – would be visiting our home. After dinner that day I proudly and also rather nervously served up the pudding. Our family always eats it cold with a cuppa and some have brandy butter on it too. I insisted no one was to taste it until my 91 year old Granny had. This amused her immensely as she took a bite and gave it her imprimatur. Albeit with the observation that if I’d grated fresh nutmeg rather than using already ground it would have been even nicer. (No I don’t know how she knew either)

Less than four years later my Granny died while I was pregnant with my daughter. One of my enduring sadnesses is that she never got to meet our precious little girl who I’m certain would have wrapped her Great Granny round her little finger. I have made puddings every year since and – like all cooks I think – have slightly tweaked the recipe that was handed down to me. I still don’t use fresh nutmeg though.

Two weeks ago my Mum died suddenly. I know it hasn’t really hit me yet and won’t for some time. Maybe once her funeral is over I will start to absorb the impact of it all. Mum didn’t have the easiest or happiest of lives at times but I firmly believe she is at peace now and reunited with my Dad who she missed so desperately for nearly seventeen years.

Today is pudding making day. I wasn’t sure if I would make any this year and I only decided for certain this afternoon that I will. Mum loved the pudding I made and so did my Granny. Both my parents and all my grandparents are dead now and while I have aunts and uncles still very much alive and kicking, I’m now the oldest generation in my direct line of ancestry. It feels very strange. I’ve long believed all we can do for the dead is remember them. By making my puddings this evening I’m remembering Granny, Mum and all the others who have gone before.

Rest in peace Mum, and thanks for giving me the recipe x

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Parenting · Politics · Special Needs

Is this early enough for you Taoiseach?

Good morning Taoiseach, its a few minutes after 9 am and its an average week day in our house which means that I’ve been up since 6.30 am.  I’m not sure if I’m the kind of person you had in mind when you said during your campaign to become leader of Fine Gael that you wanted to lead a party for people who get up early in the morning but here’s what I did this morning after I got up early.  (Well, 6.30 am is early as far as I’m concerned)

So the alarm went off and up I got, gathered my clothes and crept downstairs clutching the video monitor that sits by our bed.  We have a video monitor because our 10 year daughter has epilepsy and sometimes – thankfully not often – has seizures during the night.  You’re a medical doctor, so you should have some idea of how scary epilepsy can be.

You see Dr Varadkar, that little person is why I get up at 6.30 am on weekdays.  She has significant physical and intellectual disabilities and she attends special school.  We live in the north of the constituency of Meath West and our daughter has to travel to Navan in the middle of that constituency to go to school.  I’m talking in terms of constituency rather than counties or towns because I get the feeling that like most politicians you are more interested in votes than voters.  Her school bus collects her here at home at 7.45 am and then travels around collecting other pupils for the two special schools in Navan before she gets to school a little after 9 am – about the same time I started writing this post to you.  The journey door to door is 26 miles which should only take around 35 minutes but because we choose to send her on the bus it takes 1 hour and 15 minutes.  She’s only 10 and she’s been doing this since she was 5.  You might wonder why don’t I drive her in?  Yes, I could.  But Navan is already choked with traffic in the mornings and if I and the approximately 70 other parents whose children attend her school and travel in by bus all drove our children to school, can you imagine the chaos?  Never mind the extra traffic pollution.

But I digress, sorry for that Mr Varadkar but like every other carer my mind is constantly running trying to keep on top of everything.  Appointments, therapy sessions, equipment, etc etc etc.  Where was I?  Oh yes, what I did after I got up at 6.30 am.  Well I came downstairs, took a load of washing out of the machine and put another one on so it would be finished before the cheaper night rate electricity finished.  Every cent counts.  Stuck the first one in the dryer because it was raining here.  Then prepared some food for my daughter to take to school because she was quite ill earlier this year and her appetite is still not great so sometimes she won’t eat the dinner she gets at school.    Got her breakfast ready and swallowed down a quick bowl of cereal myself before heading back upstairs to waken her at 7 am.  She’s only 10 and she needs her sleep so that’s why I don’t get her up earlier.

I was tired last night so I had forgotten to leave her school uniform ready on the chair in her bedroom.  It only takes a minute to get it out of the chest of drawers but every second counts here in the mornings.  So grab the clean (at least I managed that bit!) uniform and wake her up.  She’s very wobbly first thing in the morning because her neurological condition (apart from the epilepsy) affects her balance and its especially bad when she wakes.  So while she’s waking up and starting to chat to me I leave her lying on the bed, take off her pyjamas, change her nappy and put on her trousers, socks, DAFO’s (splints for her feet) and shoes.  Then I help her sit up and change her vest then put her polo shirt and sweatshirt on.  Yay, she’s dressed and its only 7.15 am.  Then lift her from the bed and carry her downstairs.  She can get downstairs on her bum with help but she’s too wobbly first thing to do this, so I carry her.  By the way I’m only 5ft 2.

Into the kitchen and put her into the special chair we bought for her so she can sit comfortably at the table and eat with us.  Her breakfast is ready but first she has to have the two epilepsy medications she has in the morning.  She doesn’t really like taking them but she is a good kid and she swallows them without complaint.  She tucks into her breakfast.  While she’s eating I write a note to her teacher in her communication book because she only has about 70 words and a few phrases, none of which are expressive language, so this is how the teacher and I let each other know anything that’s going on with her and what she did at school each day.  She can’t tell me herself you see.

Its now about 7.30 and while she’s still eating – she’s a slow eater – I gather hair band, brush, hairslides, toothpaste, toothbrush, flannel and get ready to spruce her up.  She’s not able to do anything of this for herself but it all has to be done.  Like most 10 year olds she’s not keen on face and hand washing but we get through it with minimal grumbling.  All the while I’m chatting to her using repetitive phrases and words about school and the people she will see there as this is a big part of how she learns.  So there’s a bit of speech and language therapy thrown in early for good measure.

7.43 and the bus isn’t here yet – phew I’m ahead – help her walk to her wheelchair and climb into it.  Put her coat on, make sure she has everything in her schoolbag for the day and then the bus pulls up.  Grab a marker pen and a piece of paper that she likes to hold in her little hands while travelling for 1 hour 15 minutes to school.  Wheel her out to the  bus, have a quick word with the bus escort so they know what kind of form she’s in today.  Kiss my most precious girl goodbye and wave her off.  Its 7.48 and I’ve been up for over an hour.

Back in the house grab my phone, headphones, rain jacket, hi-vis vest and key and head out the door for a 5km walk.  I don’t especially enjoy it so I listen to podcasts on my way round to alleviate the monotony.  I need to take regular exercise because I’m overweight (many carers tend to be, we comfort eat you see) and my back isn’t great from lifting my daughter over the years.  I can’t afford to join a gym and walking is free.  Maybe one day I’ll get fit enough to join you for a 5km jog in the Park?

While I’m pounding the paths around Oldcastle I’m thinking about a tweet you posted a couple of days ago.  You see, that comment about people who get up early annoyed me. Actually more than that, it felt insulting to people like me who have to get up early to do the unpaid, unappreciated, unvalued work of being a carer.  I’ve tweeted about it a few times but when you put something like this up it really feels like you are just taking the piss not to put too fine a point on it.

People who get up early

 

 

Special thanks to @kloczbyjos in Glanmire for this thoughtful gift. New small craft business supported by Local Enterprise Office pic.twitter.com/JcDE2eALXj

I’m not sure if you were being facetious or if the people in Glanmire were but its clear to me and other carers like me that this State, of which you are Taoiseach, that our WORK (and it is work) is not taken seriously.

I’m up since 6.30 am Leo.  I’m tired already and its only 10.15.  Its a mental tiredness that comes from being a carer, from the never ending round of appointments, therapies, from wondering if she’s ok at school today, if she’s had any absence seizures.  It comes from fighting for equipment, for school transport, for better services generally, from trying to help other parents who aren’t as far into this life as we are.  It comes from knowing that this will not stop.  It comes from knowing that the Irish State of which I am a proud citizen does not care about carers. And that’s a very hard place to be.

What time did you get up today Taoiseach?

Bits and Bobs · Living the Good Life

Too much stuff!!

I find myself exclaiming this rather a lot lately.  It feels like we are drowning in a sea of stuff.  Junk, crap,  stuff we bought or were given and have either never or rarely used, never liked or which has now been superseded by yet more STUFF.    On those (rare) occasions when I’m in housework mode, I sometimes end up with piles of stuff in my arms trying to find a place to put it.  (What I really should do is sort it all out but y’know, time and always something more interesting to do!)

In all seriousness though, it does seem to me like we as a community, a society, certainly some of the planet, are in real danger of having so much unneeded stuff (there must a better word!) that it will bury us one day.  Why do we keep buying this crap?  I’m not a fan of shopping as a pastime and my husband and I really do try to minimise the amount of new items we buy, not always successfully.  I LOATHE Black Friday and the consumerist binge that seems to get worse every year from, oh about this time onwards, as people get all worked up over what to buy other people for Christmas.  A lot of which ends up being unwanted clutter and junk and either ends up in a charity shop, or worse, in landfill.

On that note, I was recently browsing in a second-hand shop (part of my #dontbuynew aspiration).  The amount of duplicated items was unreal – ten or fifteen copies of the same book, countless plastic toys, and ornaments.  Oh the ornaments.  Mementoes from long-forgotten holidays, commemorative plates from various royal (yes, even here in Ireland) and national events, and quite a few ornaments/plates/plaques to mark various wedding anniversaries.  I’m not talking about personalised ones with names, dates etc, just the generic ones like this –

25th wedding stuff
Dustcatcher!

Why?? Why do we buy this stuff?  All that will happen is it will sit on a dresser or shelf somewhere and some poor sod will have to take it down and dust it.  Life’s too short!

Anyway, later that same day I found myself in a branch of TK Maxx, not a shop I’d ever spent much time in as I thought they only sold clothes but I had 20 minutes to kill and discovered they sell housewares, kitchen stuff, nice stationery and best of all a small selection of books.  (If I have to spend time browsing in a shop those things suit me far better.)  Then I came across this –

stuff boxes clutter
Houston, we have a problem

Yes, a box marked Stuff in which to put stuff. Seriously, if we are now using up valuable natural resources and energy to make empty boxes just to hold more stuff, then we really have lost the run of ourselves completely.   I’m not opposed to storage boxes completely, more to the mindset whereby we’d sooner buy boxes to put ‘stuff’ in, rather than reducing the amount of stuff we have.  I’m not going all KonMari here, the day anyone catches me thanking my possessions for helping me through another day, they can have me committed.   For me, its a sign that its time to declutter more thoroughly.  I thought I was fairly good at decluttering until I found six operating manuals yesterday, three of which were for items we don’t even own anymore….

Its the volume of unnecessary, unneeded and frequently unwanted STUFF we seem determined to inflict on each other that baffles me the most.  Its like people feel obliged just to buy you something – anything – because its Christmas.  And Christmas does seem to bring out the worst elements of this.  Who really wants the gadgets that you’ll use maybe twice, the gift sets of toiletries with all that useless (and often non recyclable) packaging, and innumerable other items of tacky, poorly made TAT and CRAP  (now called novelty gifts) that will be appearing in a shop near you in the next few months weeks.  And that’s without mentioning the Christmas themed cushions, bed linen, aprons, teatowels etc that people rush out to buy, never mind the fact they have perfectly good equivalents already at home and the Christmas ones will be stored away for 11 months of the year (adding to the clutter!)

How about we all stopped mindlessly buying stuff and spent a little more time thinking about what we need and what we might really like to give as a gift?  If there is someone you feel you should buy a gift for, then what about a bottle of wine?  Or some delicious nibbles and treats?  A plant for the garden (if they are gardeners), or a gift voucher for a pampering session?  Ask yourself before you pay for that useless ornament, novelty gift or gift sets of toiletries – would I want to be given this?

Before you ask, no I’m not the Grinch, I happen to love Christmas.  But I like a simple Christmas, a simple life in fact where we are not surrounded by so much stuff we feel like we can hardly breathe.  Just stop and think before you buy more stuff.  The planet and your sanity might well thank you for it.  Not to mention your wallet.

#dontbuynew

 

 

Feminism · Parenting · Politics · Special Needs

Anomaly scans are vital

A report in today’s Irish Times claims that in 2016, 23,000 pregnant women did not have an anomaly scan. While it is possible that some of these women would have chosen not to have one, the more likely scenario is that they were never offered one.  Anomaly scans,  for those who don’t know,  are generally carried out at around 20 weeks or halfway through the pregnancy.  The purpose of them is to see if there are any possible problems (or anomalies) with either the foetus or the pregnant woman.

Of my two pregnancies, only one made it to the 20 week stage, and I did not have a scheduled anomaly scan.  In my case, this was because I had opted for midwifery-led care provided at Cavan General hospital, and that scheme (at least in 2007) did not give the option of anomaly scans.  I felt a little uneasy about that at the time, but I had been fully aware of that when I opted for midwifery-led care, so I didn’t let it bother me too much.

My pregnancy had been largely uneventful up until week 20 when I had a small amount of bleeding.  It was very little, but as a precautionary measure I was transferred from midwifery-led care to consultant-led care.  I had a scan carried out that day which did not show anything untoward and I was told I would be scanned again at 28 weeks.  If that scan showed everything to be ok I was told I would be allowed to transfer back to midwifery-led care.  I was very upset at having to leave midwifery-led care but remained hopeful that everything would progress ok and that at 28 weeks, I’d be allowed back.

The next eight weeks of my pregnancy were very uneventful and I was sure all was grand.  Week 28 rolled around and off we went for the scan, deciding that we would ask the gender that day.  The scan went well , the obstetrician (who we hadn’t met before owing me to being under midwifery -led care) chatted away to us about what he could see, informing us that baby was breech (which we didn’t know) and that it was very active (like who was he telling??).  Then just as we were about to ask if we could find out the gender, he moved the probe over the baby’s head and went very quiet.  Frighteningly so.  I’ve written about that awful time in our lives before and won’t go over it all again in detail here.

Essentially, our baby had a very rare neurological condition which necessitated me being referred to a foetal anomaly specialist in the Rotunda and having a far more detailed and lengthy scan a week later.  I was scanned frequently for the rest of my pregnancy as the baby’s head was enlarged and we had been told that she (we found out the gender at the Rotunda appointment) might need to be delivered at very short notice.  I had been planning a very intervention free birth and ended up having to have a C section.  It would have been potentially very dangerous – possibly fatal – for the baby if I had tried to deliver her vaginally and the implications for me of such a delivery were also deemed too risky.

Now, our case is rare.  But bear in mind that I had been accepted onto a program for midwifery-led care (I’m not knocking that btw) and that I had not been scheduled for an anomaly scan.  Until the bleeding at 20 weeks, I’d had a textbook pregnancy, with no cause for concern.  Just think for a minute if I HADN’T had that episode of bleeding and hence had not had a scan at 28 weeks when her condition was picked up.  Supposing my pregnancy had continued uneventfully and I’d gone into labour,  what might have happened then?  There was a chance – maybe not huge, but a chance nonetheless – that neither of us would have survived.

The Irish Times article quotes Louise O’Reilly TD, Sinn Féin health spokesperson, as saying that women outside the main cities in the State are not routinely receiving these scans.  That contravenes international advice on the best care for both the woman and the foetus.   Our daughter was born safely in Cavan at 39 weeks and is now 10.  She has both physical and intellectual disabilities and our lives are not at all as we had envisaged.  (That’s not the focus of this post, that’s just for anyone who wondered how things turned out)  I was so relieved just to have her that I pretty quickly put the whole scanning issue out of my mind, until a couple of years later when as a member of a consumer group looking at maternity care in Cavan Monaghan hospital group, I was angered almost beyond words to hear a senior midwife say she didn’t think anomaly scans were a good idea because parents get alarmed if something is discovered.   Take it from me, yes you get alarmed, but we would have been in a far worse position if our daughter’s condition had not been discovered prenatally and she had died during delivery.

Finding out that your unborn baby has health issues is frightening, terrifying, there’s no superlative that even comes close.  But – and I am only speaking for my husband and myself here – we found it gave us time (10 weeks) to get over the initial shock, to try and learn something about the condition, to inform those closest to us.  It also, and this was even more important, meant that the team at Cavan were prepared to deal with a possibly very sick baby at delivery.  (As it turned out she roared her head off when lifted out and was very stable, but we were lucky in that sense.)

I saw on Twitter today women recounting how they had been told they couldn’t have an anomaly scan (unless they were willing to go private) for various reasons.  The reasons given are not the main issue, although some are awful.  It has been argued that it is the existence of the Eighth Amendment to our Constitution  (Article 40.3.3) that has led to this situation.   This amendment states “The state acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and as far as practicable, by its laws to defend and vindicate that right.”  It has been argued repeatedly that this amendment is the reason why anomaly scans are not being routinely offered to pregnant women, as women would not be able to avail of a termination if they felt they wanted one.  I’m not going to get into the whole debate around the Eighth Amendment here.  I’m openly pro-choice and always have been.  Our Minister for Health, Simon Harris, has been reported as saying the roll-out of anomaly scans across the State is a priority for his department.  That is good to hear, but if as it seems, the Eighth Amendment is one of the reasons why that hasn’t yet happened,  then that’s another reason for it to be repealed.  Women have the right to make informed choices about their care in pregnancy, labour and childbirth.  Anomaly scans are part of that information gathering process.

#repealthe8th

food · Living the Good Life

Milk is milk is milk – or is it?

Over my first cuppa of the day while daughter was still fast asleep and before life kicked in, I was browsing through one of my (many) cookbooks. Another one that I’ve never actually made anything from. Yet. This particular one was ‘Favourite Cornish Recipes’ and I’ve no idea when or where I picked it up. (That’s true of many of my books actually. Sometimes I think they are breeding.) It included a recipe for Cornish clotted cream, something I can’t abide but my husband would love on a freshly baked scone or two. That’s if I get round to baking any.

The method in the recipe says “Pour the milk into a wide-topped basin and leave to stand for a while preferably up to 8 hours in the refrigerator, to allow the cream to rise to the top.” And that sentence stopped me, mug of tea half way to mouth. Let the cream rise to the top. Do kids today (oh that sounds so middle aged) even know what that means? I vividly remember the cream rising to the top of the bottles (real glass bottles not the awful plastic containers that a lot of people refer to as a can of milk) and when it froze in the winter (real winter!) it used to push the foil lid up off the bottle. Top of the milk in our house was poured over apple pie and was a treat to get. I haven’t seen that in years, and I always buy what is labelled as full fat or whole milk.

milk cream
Whole milk – but where’s the cream?

So I took to Facebook and Twitter asking did anyone know could this still be bought.

Still musing about how food has changed over the years, I went on to ask if anyone knew could lard still be bought. I haven’t seen lard in a shop for years. I much prefer lard to solid vegetable oils for making pastry. A friend of mine replied that it can be easily bought up the North, which I didn’t know. So unless I track it down elsewhere it looks like I’ll be doing some cross-border shopping soon. Anyway, back to milk. I took a look at Asda’s online shopping site (I don’t shop online but its great for info) and yes, they sell blocks of lard. I searched for non homogenised milk but got zero results. I’ll be back to that word homogenised later.

I prefer to buy organic when I can (not always easy) so was interested to see that Asda sell organic milk. Its on the right in this pic taken from their website earlier today.

milk
What’s in our milk?

I was quite forcefully struck by the info that the non-organic milk has 9 days typical life whereas the organic milk has 4 days typical life. So what’s in the non-organic milk that gives it a longer shelf life?? I don’t have the answers (although I have emailed Asda) and maybe this is nothing new to some, but it jolted me. What are we really consuming and what is it doing to us? I saw a great thing on Twitter this week posted by the blogger Foodborn whose approach to food and eating I love.   It said “The food you eat can either be the safest and most powerful form of medicine, or the slowest form of poison.”  Food for thought for sure.

Back to homogenised. The milk I usually buy is always homogenised. The dictionary definition of homogenised in relation to milk is “a process in which the fat droplets are emulsified and the cream does not separate.”

Homogenised – or adulterated?

My question is why? Why is this done to milk? Are many of the health problems that we’ve almost come to accept as a society down to the way our food is altered from its more natural state? I’m very aware that many people have been thinking and writing about this far longer than me and are far better informed than me but at least I’m starting to really look at what’s in our food and question what’s best for me and my family to consume.

I think my cookbooks are going to get much more use.

Bits and Bobs

Why I think Channel 4 are wrong to show the Diana tapes

I’m not a royalist, but have long found the institution of the royal family fascinating. I remember vividly – as do most people alive at the time – where I was when I heard that Diana, Princess of Wales, had died in Paris. I watched the TV coverage and a week later I watched her funeral. I didn’t understand then and I still don’t understand the outpouring of what to me seemed like hysterical grief from people who had never met the woman. However, more than enough has been written on that subject without me adding to it.

Last week I started watching the programme about Diana as remembered by her sons. I’m not really sure why I wanted to watch it, but while it was quite a moving tribute to a clearly much loved and much missed mother, it wasn’t really that interesting. (I nodded off towards the end) So when I heard about the programme to be broadcast tonight which – as far as I can tell – largely consists of videos made of Diana when she was having training in public speaking, it didn’t strike me as something I’d be bothering to watch. Over the next couple of days press stories emerged about the subject matter of at least some of the tapes. Two that stuck in my mind were that Diana apparently discussed her sex life with Charles and also an affair she had. Channel 4 have described the programme as “Brand new documentary of Diana at her most candid, natural and charismatic which provides valuable insight into one of the most iconic women of the late 20th century”

I haven’t followed all the debate around this, but it feels wrong to me that this material be placed in the public domain. I do not care about anyone’s sex life other than my own and I cannot see how conversations Diana was having which (I assume) she did not intend to be made public, can now be considered in the public interest. If she had not died, would these tapes be broadcast now? No, of course not, because she’d have every lawyer at her disposal making damn sure they were not shown. If they were to be shown fifty years after her death would I watch them? No, because I just can’t see how this can be considered a serious insight into Diana’s life and personality. Its just prurient gossip and I’m disappointed in Channel 4 for showing it.

Parenting · Politics · Special Needs

Minimum wage to go up but not if you’re a carer

Today (July 18th) our Cabinet welcomed a proposal based on a recommendation from the Low Pay Commission to increase the national minimum wage by 30c per hour from January 2018. It is believed that around 120,000 workers will benefit from this increase. This is very welcome news. But what of those in our society like me who work yet are not employed, who are deemed unavailable for employment yet have to work to receive any benefits, who work long hours with no training and immense stress yet have no rights with regard to our work? I am talking about carers.

Yes, carers. Those ‘selfless heroes’, those people who give up their careers (or at the very least put them on hold) to care for a loved one, those people who save the State an untold sum every year, those people who administer medication daily, who sometimes have to literally save a life. Those people receive in Carer’s Allowance at the most €209 per week (if they are aged under 66 and caring for one person). Yes you read that correctly, €209 PER WEEK. For a 39 hour week (the average full-time working week) that is €5.35 per hour. The minimum wage before the proposed increase is €9.25 per hour.

However, no carers work just 39 hours per week. On the Census form this year I stated that I provide care to my daughter for 168 hours per week. (That’s 24/7) You might quibble about this – what about when she is asleep? Yes, but I’m still keeping an eye on the video monitor in case of a seizure. What about when she’s in school or in respite? Yes I do indeed get a break then, but I’m still on call. At any time while she’s away I can get a call telling me she’s had a seizure, or is unwell in some way. Even if no such call comes (and thankfully they are fairly rare), I spend a sizeable portion of that time sourcing equipment for her, reading up on her condition (the carer’s version of Continuing Professional Development?), dealing with what seems like a never-ending stream of paperwork…….. you get the picture.

So if a carer gets the full amount of Carer’s Allowance (€209) for a 168 hour week, that’s €1.24 per hour. Yet not all carers get the full amount because its means-tested. In my case, I get €66.40 per week. Based on my self-defined hours of 168, that means I get 39c per hour. I personally know a number of carers whose means are such that they do not receive any Carer’s Allowance. That means they either have independent means deemed sufficient to support themselves, the person they care and any others who might live with them, OR the State has decided that their partner or spouse has sufficient income to support them. This renders the carer financially dependent on their spouse. I resent that the State forces me into a financially subordinate position.

I don’t know how many people are in receipt of Carer’s Allowance, so therefore I don’t know exactly how much it would cost the State to increase Carer’s Allowance by 30c per hour, the same amount as the minimum wage is to be increased by. I do know that being continually forgotten by the State (apart from during Carer’s Week when they can’t tell us enough times how great we are) adds to the very high stress levels that carers experience. None of us asked for this job. None of us want this job. But we do it, every day, week in week out and we will continue to do so. We do it because we have no choice. We do it out of love. But that does not give the State the right to ignore us and pay us a pittance.

Living the Good Life

Second-hand or preloved? It’s all better than buying new!

I was going through some things I’d bookmarked on Twitter earlier and found this post from a blog I’ve recently discovered and love called Treading My Own Path. Its fascinating and taps into an area of my life that is somewhat neglected. Anyway, that’s not what this is about! We have a lot of second-hand furniture in our house, kitchen table & chairs, kitchen dresser, a sofa, a nest of tables, my big old desk which will be going into my new office/study soon, various shelves and storage units. Some of them have a story attached, others we just liked.

Lindsey Miles who writes Treading My Own Path used to live in the UK, as did I. I’m not sure if she’s originally from there, but like myself, she’s comfortable with the term ‘second-hand’. Her piece mentioned above got me thinking about words. When I moved to Ireland nearly fifteen years ago, it was during the boom. Property prices were insane and what seemed to me to be houses that were really nothing special were changing hands for what I considered to be frankly obscene amounts of money. We were looking for a house at the time so spent hours online, trawling estate agents auctioneers’ websites and offices looking for our forever home. (There’s an example of word difference straight away, they call them auctioneers over here, but to me they’re estate agents) We probably weren’t an auctioneer’s dream clients, we wanted an old house, with a big garden, near to but not in a town, and ideally a renovation project. We eventually found one but that’s another story again.

What amazed me though was the use of the term ‘second-hand’ to describe a house, and it was often used in a negative way. “Oh surely you’d sooner buy a new house?” “What about building your own? Much better than second-hand”. Now maybe I’m naive (ok, I’m naive) but that didn’t make any sense to me at all. If there were (and indeed still are) a number of existing houses that were perfectly habitable and which you could make your own with decorating and remodelling if necessary, why would we go to the hassle of building? I understand that people should have the choice to build if they want and I’m not advocating denying that to them, but it saddened me (and still does) to see so many houses that had once been family homes lying empty because of the obsession we seemed to have with new builds. Why does everything have to be new??

Back to the term second-hand. I shop in charity shops, I get many of my books from them, some toys for my daughter and clothes for all of us. I buy new items of clothing if I need them (and I’m learning to sew so am making some myself) and I’m very open about the fact that I shop in them. Yet I find that for some people there’s a stigma about doing so. When did we develop this attitude that second-hand somehow equals bad or undesirable? How long do people think we can keep producing goods at the rate we currently are? And don’t get me started on Black Friday and all of the bloated consumerist madness that happens each December. It increasingly disgusts me. (I know that sounds judgmental and it probably is, but you know what, this is my blog, my opinions.)

I see terms like ‘preloved’ or ‘formerly owned’ being used a lot now. Like that sanitises it in some way. I just don’t get it. Seventy or eighty years ago, most of us in the UK and Ireland did not buy everything new. Clothes were swapped, handed down, made over, furniture was repaired not just dumped when it had served its purpose. Tools and utensils were repaired as much as possible. I’m not for one minute suggesting that life seventy or eighty years ago was all rosy and perfect, but I really do feel we’ve gone way too far down the consumerist/built-in obsolescence road. I recently had a sales call from my mobile phone provider, telling me I was entitled to an upgrade and could get a new iPhone (I think a 7?) The poor wee salesperson (who sounded very young) couldn’t grasp that I am perfectly happy with the phone I have, it does everything I need and works just fine. “But do you not WANT a new phone?” she squeaked. I ended the call rather quickly as I could almost feel the steam coming out of her ears.

Charity and second-hand shops are in some cases nearly full to bursting, full of all the stuff we thought we wanted/needed/deserved. And yet we keep buying more and so the manufacturers keep producing more. Drawing on already fragile natural resources and using unfathomable amounts of energy and fuel to produce this stuff. And that’s all it is really, stuff. Stuff that sits around in our cars and houses and workplaces and clogs up our minds and lives. Whether you prefer to call it preloved or second-hand, go take a look in some of those shops. Learn to mend and repair what you have. You might find you save some money. You might even find you enjoy it.

Before anyone accuses me of being preachy, my house is quite cluttered but I’m working on it 🙂

Parenting · Politics · Special Needs

As a carer I hate

A month ago I was having an especially bad day and in a need to vent but with a thousand other things all demanding my attention and/or headspace at the time, I couldn’t sit down at my laptop to let it all out. So I tweeted a list of things that were in my mind at the time, one after the other, it took me maybe 20 minutes. The lovely Candi over at oftencalledcathy put them together in a meme for me and encouraged me to elaborate so here goes.

Being told by well-meaning people to ask for better services (like just asking will make them appear)
An example of this, from my experience, is “why don’t you just ask for more respite?” Gee, that has never occurred to me before! Never mind the fact that so many services are stretched to breaking point. Never mind the fact that our respite service caters for over 70 families and is not open 365 days a year and tries to group the children attending together in terms of age and ability. Add to that the fact that they cannot have too many wheelchair users at the same time (fire regulations etc.) and our daughter is a wheelchair user. Also, I know many of the other families who use the service and I know how desperately they need a break too. But hey, yeah sure I’ll ask. This kind of comment doesn’t help.

Being asked why I get Carer’s Allowance when “you’d be at home minding the child anyway”
Oh where to even begin with this one which I’ve had aimed at me online many times. Caring for a child with disabilities is so much more than just ‘minding the child’. Its doing physio, speech & language therapy, occupational therapy, attending numerous appointments, administering medications, dressing, feeding , toileting a child who cannot do this for herself yet but is way older and bigger than most children who need that kind of help. Actually, I’m not going to dignify this one with a response any more. Jog on.

That it makes me financially dependent on my spouse
I’m struggling to find the words to describe how this makes me feel. Its not a bone of contention between us, but its not a position I ever wanted or intended to find myself in.

Being referred to as brave or selfless or a hero. Meaningless platitudes or to put it another way, bullshit
I know that one’s going to annoy some of you. Well, just stop and think why you might say that to a person like me. Is it going to help them in their caring role? No. Will it make them feel better? For some, maybe. It doesn’t for me. Does it make YOU feel better when faced with a scenario/life that you could never envisage or imagine having to live? Ah now maybe we are getting somewhere. You see, and again this is just my opinion, none of us family carers chose this role. That doesn’t make me a hero. I have no choice but to do this. But by telling yourself and me that I or others like me are brave, does it make you feel a little bit better that you’ve said something nice and encouraging to the carer? If you really want to make me feel better or cope better do something practical. Or something political. Keep reading.

Not being taken seriously by the State
If we and the work we do as family carers were taken seriously by the State we’d be better paid (see next point) and we wouldn’t be expected to work in the conditions we work in. We’d get full pension rights (another thing that causes me stress about my financial dependency), and automatic medical cards. No, carers don’t automatically get them, so anytime I need to see my GP its €40. There have been times when I’ve not gone to the GP although I probably should have.

If all the family carers in the State went on strike the country would collapse. If we all stopped doing what we do, the caring, the feeding, the lifting, the administering of medication, the physio, the therapies, the researching of new equipment and ideas to help your child achieve their fullest potential, the lobbying of politicians and State bodies, the toileting and all the other things we do and left our loved ones at A&E’s, respite centres and schools around the State, then our over-stretched services would disintegrate completely. But we won’t of course because we love our children and those we care for. And I really mean that, we do love them with every fibre of our beings. The State knows that and it knows we will never down tools and this allows it to abdicate their duty of care to its citizens.

That the Carer’s Allowance is means tested. I get €66 per week or just over 39c per hour
Being a family carer is not a 9-5 job. Its 365 24/7, because even when she is at school or in respite or asleep, I’m on call. I’m trying to make our house more suitable for her to live in as she gets bigger (and we get older). I’m reading up on different medications and therapies, and wondering if they will work better for her. I’m attending workshops and information sessions on various disability issues. And for all of this I get 39c per hour. Its means tested which means that my husband’s income is assessed as are our outgoings. You sometimes hear politicians defending the rate of Carer’s Allowance and pointing out that its €209 per week. Yes it is, IF you get the top rate but many of us don’t yet we do the same work. Is this an equal pay issue I wonder? There are also a large number of family carers who – because of the means test – do not receive ANY Carer’s Allowance. How is this ok? (If you’ve spotted a difference between the amount I get and the amount on the meme above, we got a €5 per week pay raise last month after the meme was made.)

Feeling that I have to justify myself and the work I do. And it IS work, done out of love yes, but still work
And I’ve just realised that this blog post is doing just that……

That we carers have to share our private family lives on national media to get help
I’ve done this a bit myself, not in any great detail. But how is it ok that the mum of a profoundly disabled child had to go on TV last month and talk in quite intimate detail about the realities of caring for her son in order that she can raise the issue of home support services? I watched it out of solidarity and was interested to see the amount of people on Twitter saying how terrible it was (yes, it is) and how sorry they felt for her. But I didn’t see anyone questioning was it ok that she had to go on national TV and say this stuff. What does this say about our society that we don’t have a problem with people being almost forced to forgo all sense of privacy and dignity in order to fight for services? I don’t have the answers, but it makes me really uncomfortable.

That I have to worry NOW about services for my daughter when she becomes an adult which is not for over 8 years
She will be 10 this summer and I’ve attended a few workshops and information sessions on adult services over the last year or so. I didn’t really think anything of it until a friend asked me what was this next meeting about and I explained it was about adult day services for people with intellectual disabilities in Meath (where we live). She looked at me with a mixture of shock and disbelief and said “why are you going to that when she’s only 9?” And you know what, that really hit home. Over the last ten years I’d gotten so used to having to research and investigate what services are out there that I no longer gave it a second thought. But I should not have to be thinking about this now, I should be enjoying her childhood, secure in the knowledge that there will be appropriate day services and respite services available for her when she leaves school. In 2025. But I’m not and that’s why I have to go to these meetings now so I can prepare myself.

That its very difficult for us to get out & march yet very few march with us
Its great to see people marching in huge numbers for issues that matter. Its heartening and reassures me that in this new post-Brexit, Trumperica dystopia we seem to be falling into that so many people still get riled up. But please, if you are reading this post or seeing things on TV or in papers about disability rights and carers’ rights, please join us next time. And ask your elected representatives why there aren’t enough respite homes or adult day services, or why carers get such an insulting amount of money …….. the list is endless. Because disability is not necessarily something a person is born with. People acquire disabilities every day. The 2011 census showed that 13% of the population of the State were living with a disability. That’s over half a million people. There are about 4.5 million people in this State, so the chances are you know someone with a disability or at least one of their close family members. Just think about that the next time you see something about disability online or on TV and you cluck your tongue and say “ah that’s terrible”. Next time, do something about it.

Advice lists of the things I should do to look after myself yet no one considers lack of time or money to do them
I’ve been tagged in loads of these. Generally the advice is to exercise more, eat better, make time to meditate or similar, develop interests and hobbies outside your caring role, make sure to spend quality time with your partner and have time with your friends. These all require time, in some cases money, and a support network. Not all carers have those.

Watching other carers in crisis and feeling so completely powerless to help
Its heartbreaking. And its frightening because I can never shake off the feeling that one day it could be me.

That I get no training in manual handling yet am allowed/expected to do untold irreparable damage to myself every day
That seems to surprise an awful lot of people, well in my acquaintance anyway. “What, you mean you’ve never had any training?” Training? Training on how to lift my daughter who has disabilities? No. Training on how to lift and manage her physical needs so I don’t hurt my back? Nope. So, no, as far as I can make out, family carers like me don’t get any training in how to care for our loved ones. Just think about that for a minute. My daughter will be ten years old in a few months. She is very slight for her age but has long legs (inherited from her Daddy). I’m 5ft 2in and carrying a few extra stone yet I am allowed, expected even, to lift and manoeuvre her in such a way that means I am doing untold and irreparable damage to my back and joints. In her school and respite service she attends, both of which she adores, there is absolutely no way this would ever happen. No way would one member of staff be allowed or expected to lift her in this manner, both for health and safety and child protection reasons. Yet I’m expected to.

The mental strain of it all. I don’t like the person I am at times
I’ve always been hot-tempered, fond of an argument and unafraid to voice my opinions. But I’m increasingly becoming less tolerant of bullshit and timewasters and I’m snappy at those I love. I’m mentally tired most of the time and that takes a physical toll too.

That I’m expected by some people to accept this is all part of some deity’s plan. Really?

If you want to believe that some deity made a decision to damage my beautiful little girl’s brain in order to meet some part of a bigger plan that’s up to you. I don’t believe that and I find the concept of a deity that would do that frankly quite terrifying. And for anyone reading this who doesn’t accept that some people think that, just ask yourself what other interpretation we can put on the words “ah sure he knows what he’s doing.” Or “everything happens for a reason.” I can’t see a reason why any supreme being would damage the brain of the most wonderful precious little girl ever. And if you think you know a reason why, keep it to yourself please. Your belief system is not mine and just because my daughter has disabilities, that does not entitle you to push them onto us.

That when we get respite some people tell us to go away for a few days when sometimes we just need to rest
“You should go away for a few days, put your feet up.” We’d LOVE to, sometimes. But that costs money and energy. (Booking, packing, travelling) Respite is more usually on weeknights and my husband has to go to work the next day so its not really an option. And sometimes we just want to chill in our own home, or catch up with some DIY or gardening or other stuff. So please, lose the slightly disapproving look and the “but you should be doing xyz” its our time, let us spend it how we choose.

That my child’s school is 26 miles away so even in an emergency its 45 mins to get there adding to stress
Just imagine you’ve had a call from the school, your child is ill/had an accident and they need you there ASAP. Your stress levels soar, its part of being a parent. Then imagine you have to drive three-quarters of an hour (because with the traffic that’s what it takes) until you see for yourself. Most parents thankfully don’t have to face this, but if your child attends a special school there’s a good chance your child (who can have really quite high care needs and in some cases can be medically fragile) will be that far away from you for a few hours each day. Just think about that would make you feel.

That I rely too heavily on food to cope even though I know it just exacerbates things
Caitlin Moran called overeating ‘the addiction choice of carers’, I think she’s on to something. When life is this stressful, anything that gives momentary pleasure or relief is irresistible. Food is so easy to use as it enables us to carry on with everyday life, in a way that severe addiction to drugs or alcohol can’t. And knowing that its making me feel worse doesn’t mean I can easily stop.

The knowledge that this will only stop when I die or if my child predeceases me. Knowing there’s no end to this
I can’t add anything to this. Its overwhelming so I try not to think about this.

That I can so easily type this out without having to think too hard
Its probably only the tip of the iceberg….

Parenting · Politics · Special Needs

Waiting for 10 years – ratify the UNCRPD now!

Ten years ago, I was pregnant with our daughter. Having suffered a missed miscarriage the previous summer, we were naturally anxious about this pregnancy, but by March of 2007 I was safely in the second trimester, feeling good and looking forward to our baby’s arrival in July. The incessant nausea and exhaustion that had dominated the first trimester were – thankfully – a memory and I was enjoying having a bit of time just to myself.

Anyone who knows me well knows that I’m a bit of a news junkie (which I may have mentioned here before), but a story which happened on March 30, 2007, either wasn’t much reported (I genuinely don’t know) or it didn’t come onto my radar. Or maybe I read it at the time and then forgot about it. What was this news story? Well, on that day, March 30, 2007, the Convention on the Rights of Persons with Disabilities was opened for signature by the member states of the United Nations. The Republic of Ireland was one of the first countries to sign on that day, along with 81 others. This, you might feel, is something I, as an Irish citizen, should be proud of. Well, yes I am. Or I would have been had I been aware of it. Like I said earlier, maybe I read a news report about this and having read it, promptly forgot all about it. Remember that, its important.

The Convention on the Rights of Persons with Disabilities is described by Inclusion Ireland as “an International Agreement directed at changing attitudes and approaches to persons with disabilities”. Sounds right, don’t you think? Only as it should be. So if Ireland has signed it, what’s the point of this blog post? Well, signing it isn’t the full story you see. In order for it to mean anything in Irish law – for anything to really happen or change – Ireland has to ratify the UNCRPD. And ten years after it was one of the first member states of the UN to sign the Convention, Ireland has still not ratified it. We are the only EU state not to have done so.

To quote Inclusion Ireland again: “​The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.” So its a list of RIGHTS for persons with disabilities and Ireland has not ratified this.

If you are wondering what any of this has to do with my being pregnant when Ireland signed the Convention, let me explain. Less than a month after Ireland signed the UNCRPD, we received the devastating news that our unborn daughter had a rare neurological condition and that it was highly likely she would have a significant level of disability. (I’ve written about this time in our lives here) To say we were distraught doesn’t come close. I still don’t have the words to describe my feelings at that time. But, July came and along with it came our amazing daughter Fionnuala. Yes, she does have severe intellectual and significant physical disabilities, but she is first and foremost our wonderful girl.

And over the last ten years we have learnt so much (and still are) and we’ve pushed and argued for services we wanted her to have. And we’ve met some incredible people. And we have seen just how little this State – our State – really seems to care about the rights of persons with disabilities. In fact, it feels like they care about it so little that they haven’t ratified the Convention they were so quick to sign up to. And we’ve learnt that to some people who live in this State, persons with disabilities are not seen as equal citizens, as equal people. (The pitying looks and comments, the parking in disabled spaces when they don’t have a permit, the unquestioning acceptance of the way things are without asking is that actually right… I could go on) And increasingly I find myself thinking that if the UNCRPD HAD been ratified before now, would we have spent so much of the last ten years fighting for services for our daughter? Signing petitions for a variety of disability issues? Going on demos and marches against cuts to services and grants, demanding rights not charity for our daughter and all persons with disabilities in this State? Or would we have been able to use that time and energy and headspace to just enjoy our daughter, to just live as a family?

If you believe that Ireland must ratify the UNCRPD, rather than just reading this and then forgetting it (like I mentioned above), join Fionnuala and me and many many others as we protest at Dáil Éireann, demanding that Ireland ratify the UNCRPD. You may not have a disability, you may not know anyone who has a disability, but please, if you can at all, join us. This is a human rights issue.

Fionnuala will be ten years old in July 2017. She was born with disabilities into a State that had just signed the UNCRPD. Is it not disgraceful that her State has still not ratified it?