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

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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?

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

An apology to my daughter

Darling girl, I am sorry that Mummy hasn’t been in good form today. I am sorry that I said no to reading Little Miss Sunshine for the tenth time in a row because I felt like my brain would explode if I did. I am sorry that I just could not face singing Baa Baa Black Sheep again even though you asked me to in your own sweet way. I am sorry that I had to take you into the community office today so I could catch up with what has been happening, I know you were bored.  I am sorry that I had to spend nearly an hour on the phone earlier trying to sort out an urgent problem with a piece of equipment and that I couldn’t play with you while I was doing it because there is only one room in the house I can get a clear mobile signal today.  I am sorry that I was short-tempered with you when you decided to wake up just 10 minutes after snuggling down with your blankie for a nap and my much needed cuppa was less than half drunk.   I am sorry that I scared you earlier when I burst into tears of pure frustration because I can’t get anyone to tell me when the missing piece of your new equipment will be here and what I am supposed to do now that the old one broke today.

Daddy will be home soon and Mummy will go out for a walk to try and get rid of her bad mood.  And then tomorrow we will go into battle with the system again.  Tomorrow will be a better day sweetheart, I promise xxx

 

Bits and Bobs · Uncategorized

The A-Z of me

A couple of weeks ago some of the very talented writers in the Irish Parenting Bloggers group started writing A-Z’s about themselves.  As ever, I’m a bit late to the party, but was tagged by Clare who writes at The Clevs to add mine, so here goes!

A  One of the things that infuriates me is apathy.  I really can’t get my head around the mindset of people who have no interest in what’s happening in the world, or who just sit around and whine things are bad but do nothing about it.  Drives me demented.

B All I want in life isBooks. Well there was never going to be anything else for B really was there?  I have everything in this list except not enough of 5 and 11 and will always need more 12’s.

Chocolate, crisps and cake, three of my biggest weaknesses when it comes to snacking.  I’ve never tried to make crisps or chocolate, but love to make cake……. These were my first attempt at hot cross buns (before baking)DSCF3332

D  Dandy Walker Syndrome, the rare neurological condition our beautiful daughter was born with nearly eight years ago.  Becoming a parent for the first time changes your life in ways you could never have imagined, but this diagnosis (which came prenatally) took our lives in a direction we never knew existed.

E  I love elephants, no idea where this came from or why but I just love them.

F    I can’t remember when I first heard the word feminism or discovered what it meant (and then went on to discover how it has many different interpretations) but I vividly remember the first time it was used in a derogatory sense towards me. Yes it was the classic “You must be a bra-burning feminist then” when I expressed an opinion aged 15 in the school library that I didn’t think it necessary for women to change their surname upon marriage.  F is also for Fionnuala, my amazing and adored daughter.

G  On a good day (and today is dry at least!) I can easily spend an hour just sitting in the garden listening to birds and daydreaming.  A great way to switch off.

H  my truly wonderful husband. Falling in love with him changed my life in ways I could never have imagined, and has enriched it immeasurably. And following on from F above, I didn’t take his name when we married. As he put it so well when talking to another person “She has a perfectly good name of her own.”

I  Imagination  – mine is always on the go.  Sometimes it would be nice to turn it off for a little while.

J  Growing our own fruit and veg has made me come up with ways to preserve our bounty.  Jam is something I made rather a lot of last year – gooseberry, gooseberry & elderflower, blueberry, marrow & orange, marrow & ginger, blackberry & apple (ok that was jelly).  I haven’t entirely got the hang of it yet but there’s a nice feeling in seeing the jars all full and neatly labelled.

K  One of my forms of therapy is knitting.  I don’t claim to be very good at it and I’m not terribly fast, but I enjoy it and it helps me to relax and unwind.  Apart from when a pattern goes wrong and I curse it to the pit of hell.

L   Liverpool, a city very dear to me and the football team I’ve supported since I was 6 years old. The latter fact played a small part in my choices for university applications and I’ve never regretted going there as a very nervous fresher 23 years ago.  Great city, great people.  I ended up staying for 10 years.

Money.  Like many people I spend a certain amount of time having to think about money and usually how to make it go further.  I’m not however motivated by it and have zero desire to accumulate a lot of it.  Once I have enough to meet my living expenses I’m not bothered about having more.  Here’s another mindset I can’t understand: people who have made more money than they could spend in 20 lifetimes yet they carry on making more.  WHY???? A certain wealthy businessman who lives in Malta comes to mind here.

N Current affairs, politics, news, I’m a news junkie.  Two daily newspapers, the news/current affairs radio programmes, never miss at least one evening news show on TV.

O   I hold very strong opinions on a lot of topics and am not afraid to express them.  Sometimes this annoys people. See F above.  However, I maintain – well I would wouldn’t I ? – that my opinions are as valid as anyone else’s.  And hopefully better thought out than some.  I am working hard on listening better to other people’s opinions too.

P  powerPower. I had some fascinating discussions and arguments about power and its meaning, use and abuse while studying community development last year.  Still pondering this one through but I think its something we hand over way too easily.  And see A above.  

Q  As a child I asked questions constantly.  Why this? Why that?  Why does…. ? why doesn’t…….?  I keep questioning, always will.

R  A rose by any other name would smell as sweet apparently.  They are my favourite flower, apart from yellow ones.  They don’t feel or look right to me.

  Being by the sea is one of my favourite places.  It doesn’t matter which sea or where I’m near it.  But I wouldn’t want to live on the coast  – I like to keep it as somewhere to go for a treat and to relax.

T  I was never that keen on or interested in gardening as a child and teenager (probably not that unusual) but developed an interest in growing food around the time I really learnt to cook.  This would be 20 odd years ago now.  Over the years this has deepened and now we grow some fruit, some veg and herbs.  So why is this not under G for garden or F for food?  Cos deep down I really want to be Barbara from The Good Life!! Love the idea of self-sufficiency and hope to make more moves in this direction.  The Good Life

U University.  Sometimes I feel I didn’t make enough of my time at university.  Don’t be too surprised if I end up at one again in the not too distant future!

V  Vino. Red for preference.  There is something incredibly relaxing for me about sipping a glass of good red on a Friday evening.  A good way to start the weekend!

W  Walking.   I have started to walk between 4 and 5kms every day, don’t hugely enjoy it (I could be at home reading a book!!!) but I can feel the benefits so will persevere!

X  Xenophobia – the fear or hatred of foreigners or strangers or their politics or culture.  That is the definition from the online Collins English Dictionary.  I cannot, and never could, understand prejudice.  Its the most frightening mindset out there and I do my best to challenge it when I hear it.

Y  I’ve only done Yoga a few times, but every time I have loved it and found it a great stress reliever.  I would love to incorporate it into my weekly routine somehow.

Zzzzzzzzzzzzzzzzzz  I love my sleep and I love my bed!  Curling up in there with a good book is a great pleasure.

Books · Parenting · Special Needs

Be careful what you wish for! My book loving daughter

Anyone who knows me even a bit knows how much I love books and reading. Friends have been known to post things like this on my Facebook page: books

Anyone who has been to our house has seen the evidence of that for themselves as shown by the bookshelves in our room, our daughter’s room and our living room. Exhibit A m’lud:

books, reading, bookshelves
You can never have too many books
In my defence, not ALL of these are mine. Just most of them.

My husband suggested buying me a Kindle or similar for my birthday a few years ago but I wasn’t keen. He was surprised, having thought (quite logically) that I would love to be able to have loads of books literally at my fingertips anytime I wanted. But I like the physicality of a book. I love to turn the pages (and I will admit I am terrible for dog-earing books) and curl up with a book on my lap. Somehow an electronic device just doesn’t feel the same. Yes I have definite Luddite tendencies too. I’ve always loved books and was able to read independently from a young age. It does occasionally cross my mind that maybe I use books as a way of blocking out the rest of the world – but then again maybe that’s just so I can have more time for reading!!

I’ve never had much interest in clothes/fashion/make up etc and the idea of spending a day shopping as a pastime fills me with dread. Unless of course its bookshops. I genuinely find it hard to pass a bookshop, especially one I’ve never been in before. I have library cards for Meath, Westmeath, Cavan, Fingal and Dublin City libraries. And at present I have books from most of these on my desk….

books, library, libraries
The current stash of library books

So as both of us are book lovers and read voraciously as children, we fully intended that any child of ours would be encouraged to love books and reading too. As regular visitors here will know, our gorgeous little daughter has intellectual disabilities and cannot read yet. But she adores books and being read to and will ‘read’ to herself in her own little way. Naturally we are delighted by this, apart from the sheer enjoyment she gets from it, this also helps with her speech and language development as well as her fine and gross motor skills. Oh yes, any activity can be counted as part of the home therapy programme 😉

When we moved into this house, I quickly identified two favourite spots for reading. I will read anywhere, but there are two favourite spots I have. One is on the landing at the top of the stairs right under the window. This gives me lots of natural light and also easy access to the books upstairs. The other is on the sofa under our living room window. After our daughter was born my reading time inevitably dropped dramatically for a good while but thankfully as she settled into a regular nap routine, I was able to get back into it. As she got bigger and eventually began to sit up on her own and then progress to moving around a little bit, my reading again became more confined to a few snatched minutes here and there. It was at this stage my husband became accustomed to finding four or five books left open at various places around the house, this was so I could carry on reading wherever she wanted to explore. And no I was not being a bad mum by reading while she was exploring, its just that there are only so many times you can feign fascination with opening and closing the same drawer and besides she seemed to get more fun out of doing it herself.

About 18 months ago, our wee girl decided for herself that if she wanted to ‘read’ one of her books or have one read to her, then there was only one place that should happen. On the sofa under the window, i.e. one of my favourite reading spots. This has now progressed to the point where the first words she says every day when she gets home from school are ‘book’ followed by ‘sofa’. I fear I may have created a monster. So now I cannot sit and read on that sofa while she is in the room unless she is engrossed in something else. As she is now able to get to her books unaided, select one and then climb onto said sofa, I have increasingly found I am being asked to vacate sofa so she can have it. This either comes in the form of a gentle shove (which is a great game) or occasionally the ‘request’ “Get off”. Charming. At least when I go searching for a book, I put the others back on the shelf, not like a certain little person! children's books, books, reading

And then the other day I caught her. Sitting cross legged (v cute) on the landing under the window ‘reading’ the book that was on my bedside locker. I may have to accept this is a battle I will lose.

Parenting · Special Needs

So the sleepover went great ….

You might remember last week that I posted about my little girl going for her first overnight respite and that I was a bag of nerves over it, well you’ll be pleased I hope to hear that it all went just fine, although I will admit I had zero concentration that evening for anything very much!

I wasn’t surprised to hear that she had good fun in the respite home and went off to bed just fine and slept well, I know her well enough by now to know that she is generally a happy, easygoing little person who takes change in her stride. I will admit to a little pang when I got the text to say she was fast asleep – not that I wasn’t delighted and relieved – I was – but there was an element of ‘did she not even miss me??’

So that’s another hurdle crossed, Fionnuala flew over it and Mum struggled and stumbled but got there in the end. Phew!!!