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?

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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

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.

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?

Parenting · Special Needs

Caring for a medically fragile child in Ireland: An open letter to the Irish Government

Since the budget on Tuesday I’ve been trying to gather my thoughts on the €5 increase in Carer’s Allowance, but this post from Transitioning Angels says it way better than I could

Transitioning Angels

Ignored. Forgotten. Conveniently overlooked. Set aside. Dismissed. Considered unimportant. Call it what you will, families with children who are disabled and/or have life-limiting conditions were, for the most part, ignored in the 2017 Budget announced here in Ireland on 11 October 2016.

There was a crumb given after parents had to fight tooth and nail – that of medical cards to children who currently receive DCA (Domiciliary Care Allowance) payments – and for those families it does indeed come as a welcomed relief. Having said that, it was something that should have been done from the very start, so for it to finally be done now is a bit anti-climatic. It is still only a nugget given to try and satisfy a famine-like situation.

Families with severely disabled, medically fragile children are struggling financially.

We have many expenses beyond that of the typical family, yet in most cases one of the parents (that is…

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General Election 2016 · Parenting · Special Needs

#GE2016 part three: Why we have to Disable Inequality

The Disability Federation of Ireland has been running a campaign called Disable Inequality prior to and during the general election campaign, asking voters to vote to end discrimination for people living with disability. You might wonder in what ways are people living with disabilities facing discrimination. Take a quick look at the stories that the Disable Inequality campaign are sharing and you’ll see.

I do not have a disability but am the very proud mother of a feisty and fabulous daughter who has physical and intellectual disabilities. If you have children, ask yourself will your child/ren be helped and enabled to achieve their full potential? Children with disabilities are frequently told no they can’t take a certain subject for Junior or Leaving cert because the extra supports they need are not in place. Does that sound fair to you? Children with disabilities (who are still growing) are all too often left months, even years, with too small or inadequate equipment, or face long waits to have physiotherapy or occupational therapy. Does that sound fair to you?

Some children with special needs have to attend special school (like our daughter does) as their local school cannot provide the assistance and supports they need to achieve their full potential. That means they don’t get to go to school with their siblings and neighbours. Does that sound fair to you? In our case, our daughter’s school is 26 miles away. That is a round trip of 52 miles each day. 5 days a week. That is 260 miles she travels each week just to attend school. She has been doing this since she was five years old. Does that sound fair to you?

If children were facing these issues around equipment, therapies, appointments, schools because of their ethnicity or religion there would (hopefully) be an uproar. Yet when it comes to our children with disabilities we are told its all due to budgetary cutbacks and to staff shortages and to ‘the system’. If you get the opportunity to talk to a candidate in the next two weeks, ask them what they and their party if they have one are going to do to end this discrimination. Or contact them and ask. During the marriage referendum campaign last year I recall seeing a poster that said ‘Let’s treat everyone equally’. I hope I live to see the day when that really happens.

Feminism · General Election 2016 · History · Parenting · Politics · Special Needs

#GE2016 part one: what kind of voter am I?

Here in the Republic of Ireland we have a general election looming. It was finally declared this morning and will take place on Friday February 26th. Consequently I will be glued to the TV on Sat 27th, Sun 28th and quite possibly Mon 29th depending on how long it takes for all the counts to be concluded and the results finally known. (For readers unfamiliar with our system, we have multi seat constituencies and vote by proportional representation so it can take awhile. For political nerds like me that’s part of the fun.)

Along with the various candidates clamouring for our attention and promising us the sun, the moon and the stars, or least promising that they aren’t as bad as the other lot, a number of organisations have campaigns running either asking candidates to make various pledges or asking voters to highlight the issues that matter to them. Reading through some of these made me think about the issues that will decide how I use my vote this month. I WILL use my vote – I have voted in every election I have been eligible to vote in – but as yet, I am uncertain which way it will go.

In an attempt to tease out some of my thinking, I’m going to look at some of the issues/ideas/ways in which my vote might be influenced. A lot of psephologists and political analysts talk about there being certain ‘types’ of vote – so what kind of voter am I?

I’m a woman. I’ve often wondered if there really IS such a thing as ‘the woman’s vote’. It implies that women will vote the same way or at least be influenced by the same issues when deciding how to vote. I don’t know if that has ever been true. The National Women’s Council of Ireland have asked candidates to sign up to their Breakthrough Manifesto for Women, all of which I agree with. At time of writing none of the candidates declared for my constituency of Meath West have signed up for this. I know women who will not agree with all of the points in this manifesto, but we are all women voters – so is there really a ‘women’s vote’? Should a woman vote for a candidate simply because she is a woman? No – there are some women candidates who, if they were running in my constituency, I would not give any vote to, because their policies and beliefs are so far removed from mine that they would not be representing me.

I have a child with special needs, and am her carer. This will be one of the biggest deciding factors for me when using my vote. I wholeheartedly support the Disable Inequality campaign to end discrimination for people living with a disability. In case you think such discrimination does not exist, ask yourself do people with disabilities have the same access to education, training and employment as everyone else? (The answer is no by the way). Ask yourself, do people with disabilities struggle financially? (That’s a yes – the burden of paying for extra heating, housing aids and transport means many families with a member with a disability are struggling) This week when the country has been shocked by the terrible story of alleged abuse of children and adults with intellectual disabilities, Inclusion Ireland has released its manifesto for the election. It makes sobering reading.

I’m middle aged (and proud of it! Think of the alternative!) – is there a particular voting trend or voting appeal that should apply to me? I can’t think of one. Does being 44 (nearly 45) mean I think and hence vote a particular way?

I live in rural Ireland, on the edge of a small town with a rural hinterland. I am not originally from rural Ireland but have chosen to settle and raise our daughter here. That surely implies a commitment to rural Ireland, I could have just as easily chosen to live in a large town or city. I have no connection to farming, I don’t follow GAA (ok I like to see Meath win), I’m tired of hearing about ‘blow-ins’ who don’t understand the community they live in. Surely a community is not something set in aspic, surely it changes and adapts to those who live in it whether or not their families have lived there for generations. Those who wish to represent rural communities would do well to remember that these communities are not homogenous. Yes, many of the so-called rural issues are important to me – better public transport, the effects of the economic downturn and how long it is taking to see the promised upturn in some areas, employment, migration etc. But these are not the only things that will determine how my vote is used.

I want full equality in education, and support the campaign by Education Equality for the ending of all religious discrimination in State-funded schools. I would be delighted if the Education Equality campaign would also look at the issue of special schools and religious ethos.

To sum up then, I’m a middle aged woman living in rural Ireland with a child with special needs. I want to see full equality in our education system, an end to the inhumane system of direct provision and the repeal of the 8th Amendment. I care about where our food comes from and what we are doing to our planet. I’m not motivated by the acquisition of wealth and am passionate about making our history and heritage something that can be appreciated and cherished by all. What kind of voter am I then? I suppose what I’m trying to say here is that voters don’t fit into easy little boxes for canvassers and pollsters to tick off. We are more complex and have a range of issues that will affect our votes.

So, candidates of Meath West, what can you do to win my vote? You have 24 days including today and polling day. It’s over to you!

Parenting · Special Needs

It’s oh so quiet

It’s oh so still.  I’m all alone and so peaceful until…… (Apologies to Bjork!)

Yes it’s the first day of the school year and many parents all over Ireland are heaving huge sighs of relief, we did it, we survived the summer and now normal service can be resumed.  A lot of parents I know really miss their children in term time and find days like today a bit hard.  I freely admit that while I adore and cherish my beautiful daughter I find the summer holidays in particular hard at times and I love to see her going back to school.  This year the weather really wasn’t great and there’s no pleasure in taking a wheelchair out in the rain.  We didn’t have a break away as we are (or more correctly my husband is) doing a lot of work on the house, so it felt like a looooong time.  Or at least it did to me.  What I found the hardest was the lack of headspace.  My daughter is not a particularly demanding child, or even hard to amuse and deal with, its just that her level of disability means she needs me a lot.  That’s fine and I am well used to it but its still a bit of a shock to the system to not have any free time really.  As she is my only child, once she is at school my time is largely my own.  (housework, gardening, cooking, community work, historical research to keep my brain going, crafting….)  So even though I knew that wouldn’t be the case over the summer it still hit me quite hard and I am afraid to say I was a bit short-tempered at times as a result.

Then it occurred to me as I was driving home from taking her to school (I like to take her in on the first day) that she probably (hopefully) hadn’t noticed any of my stressy frustratedness at all.  So maybe I need to plan better for the summer break?  Clear the decks of various projects over the months leading up to it and say to myself, ok this is downtime and even though I might not get much headspace – to blog for example! – it might not matter so much.  Hmmmm.  Something to ponder while I enjoy my third cuppa in peace – bliss!

Parenting · Special Needs

If your child goes to special school……

When it became apparent that our little girl would not be able to attend mainstream school owing to the level of her disabilities, we adjusted our ideas and hopes for her and began to explore what options were open to us.  In our county, there are two special schools, one of which caters for her level of disability.  It is an excellent school and she is very happy and settled there.  There are some things that I hadn’t really thought about prior to her starting school that you miss out on when your child attends special school.  Some are small, but not insignificant, others are quite big.

1. School gate chats and getting to know other parents.  Our daughter’s school is 26 miles from home.  She, like most of the other children who attend the school, is driven in by bus.  That obviously takes a great strain off parents but it also means you miss out on the informal chats and networks that often develop amongst parents. Our school has a good Parents’ Association, but again the distance can make it hard for people to attend meetings.

2. Usually you have no choice about which school your child attends.  Now I know that many parents around the country whose children attend mainstream school have very few  – if any – options.  But when your child has to attend special school, it feels like the idea of even HAVING options goes completely out of the window.  Parents of children in mainstream schools may wish their child to attend a certain school for religious reasons, or they want education through the medium of Irish, or they want a school in a particular geographical area, or one with smaller classes.  Whichever of these reasons is paramount to them (and of course many parents are perfectly happy with their local national school, which is great), at least they have options they can investigate.  That option is not open to parents whose children have to attend special school.  As I said our county has two special schools, but only one caters for children with our girlie’s level of disability.  So that was our only ‘option’.

3. Your child may well have a lot of travelling to get to and from school.  In our case, as I said above, the school is 26 miles from home.  That means she leaves home at 8am and is back around 3.30pm.  That is quite a long day for a small child, and she was only just over 6 when she started there.

4. The thing of not getting to mix regularly with other parents means that you don’t get to know the parents of your child’s classmates.  So organising to meet up outside of school – which can be a great social thing for both parents and children – is often non existent.  And inviting your child’s classmates to a birthday party?  How, when you don’t even know their parents?

5. It takes your child away from their home community.  That means that other children of her age in our town don’t know her and she doesn’t know them.  That means no playdates (much harder with a child with special needs, I know), no involvement in our local school which is a big part of any community.

Please don’t misunderstand me, we are very happy with our school, our daughter is very settled there and has made fantastic progress since she started.  I hope this post doesn’t come across as a ‘poor me’ post, its not meant to.  Its just that there is so much that we all expect to experience as part of parenthood, that for those of us whose children attend special school, we can never have.