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

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?

History · Politics

How I’m spending Easter 2016 – you never know where life will take you!

To explain firstly for those of you who don’t know, I live in Ireland and Easter 2016 is a huge event here as it marks the centenary of the Easter Rising in 1916. I won’t go into all the debates, discussions and arguments here as to whether or not the Rising was a good thing, if you want to read that there are millions of words written on that very subject. Irrespective of anyone’s opinion on the Easter Rising it is irrefutable that it set in train the long, painful and bloody list of events that led, eventually, to the creation of the Irish Free State. Again, opinions on the rights or wrongs of that are not what I am considering here today.

What I’m remembering today is a conversation I had over 20 years ago in Liverpool when I was an undergraduate. It was in the student common room of the Institute of Irish Studies at Liverpool University and somehow we found ourselves taking about the Easter Rising. I vividly remember saying that whatever else might be going on, I fully intended to spend Easter 2016 in Dublin, nowhere else.

Well today is Easter Sunday and I’m not in Dublin. Instead I’m ensconced on the sofa in our living room in Oldcastle, Co. Meath with the television on – telly NEVER goes on here this early in the mornings (9.45am) unless there is a major event happening. RTE (our state broadcaster) is giving full coverage of today’s State Commemoration. So am I disappointed not to be in Dublin this weekend? No, not really. Oh, I imagine the atmosphere in Dublin today and tomorrow will be great and it would be great to be there but with a wheelchair using child, hordes and hordes of people and a LUAS strike, its not the most appealing combination!

But I’m marking Easter 2016 in my own way. Yesterday I gave a paper on ‘Women of the Rebellion and the War of Independence’ at a seminar in Trim. Today is a day to follow it on the telly (I’ll see more anyway!!) and tomorrow, Easter Monday (the day the Rising actually started) I feel very honoured to have been formally invited by the government to attend the official State Commemoration at Ashbourne in Co. Meath, site of the Battle of Ashbourne. Over twenty years ago I never imagined I’d be living in Ireland and not only watching the commemorations but contributing to them in a small way.

You never know where life will take you!

General Election 2016 · Politics

#GE2016 part four: Election Day – shaping the new Government?

Over the course of the election campaign, I’ve been watching politicians from various parties and some from no party on the media. Some of what they have to say I’ve liked, some not so much, and some made me plain angry. No surprises there really. But this time round (and I’ve voted in every election I have been eligible to vote in since I turned 18) I have struggled to decide who to vote for. I have now decided and I will be voting later on today but one thing has really struck me as I’ve deliberated over who to vote for. I will be using my vote today but I will not be playing any positive part in shaping our next Government. And that makes me wonder if our electoral system needs some tweaking.

I live and vote in the Dáil constituency of Meath West. There are 9 candidates seeking election here. Some constituencies have 20 candidates, our neighbours in Meath East have 12 to choose from. I could, if I wished, vote for all 9 in order of preference. On this occasion I choose not to do that. Of our 9 candidates 2 are from Fine Gael, the majority party in the outgoing coalition. I will not be voting for either of them, I don’t agree with them on many issues and one of them I have found to be an utterly ineffectual TD so no vote from me there. We have one candidate from Fianna Fáil and I cannot forget what that party has done in the past. Again, I also disagree with many of their policies. So no vote going there. For those of you unfamiliar with Irish politics, Fianna Fáil and Fine Gael are (currently) the two major parties, so you might see where I’m going. We have one candidate from Sinn Féin. I have voted Sinn Féin in the past and while I do not agree with all of their policies, there is some common ground there. Depending on how things go today (and there are MANY uncertainties in this election) Sinn Féin could well end up as the leaders of the opposition in the next Dáil. But I cannot vote for their candidate here as he and I differ on the repeal of the 8th Amendment which is a red line issue for me.

So 4 down and no vote cast yet. There’s an independent candidate who has not even produced any election literature that I can see (and I’ve looked) so that’s a no. 5 down, 4 to go. The Labour party candidate – and indeed the only woman standing here – hmm, she had a chance of a lower preference from me until I spoke to her at a hustings event and again we differ on the repeal of the 8th. Nope, move along please. 6 down, 3 to go. I’m now left with the Green Party candidate, the Direct Democracy candidate and a candidate from the Christian Jobs and Action Party. I do not believe any political party should espouse any religious belief so that’s a no. (Unsurprisingly, we differ on the 8th too) So I’m left with 2 out of 9. One of these will get my first preference, the other my second. Neither party has – in my opinion – any hope of forming part of the next government. But at least I will have voted.

So, back to my earlier point about maybe our system needing tweaking. There are some parties who DO interest me (actually the Greens come into that category too), such as the recently formed Social Democrats, the People Before Profit movement and the Anti-Austerity Alliance. None of them are contesting this constituency so I can’t vote for them, yet they are the parties with whom I would have the most common ground (in different ways). Should we have some kind of national list system alongside the constituency votes? That way more people might feel like they are actually getting a positive say in who shapes our next government? I don’t have any ideas as to what form that might take or how it might work, but this election has really gotten me thinking.

There are some independent candidates in other constituencies who I really hope get elected (and in some cases re-elected), Katherine Zappone, Carol Hunt, Averil Power, Joan Collins…. to name just a few. Let’s wait and see – I will be glued to the results for the next few days.

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.

History · Politics

RTE’s Rebellion – initial thoughts

I’ve just watched the first episode of RTE’s Rebellion series and overall I enjoyed it. My main thoughts:

Great to see women characters to the fore, I wonder if the Elizabeth character is a composite of Helena Molony and Countess Markievicz?? I’m not sure about the storyline with May – the idea that she took the document from Dublin Castle because she had been thrown over by her married lover. I’m not really buying that. The Frances character – I was delighted to see her wearing a Cumann na mBan brooch 🙂 – I started off liking her portrayal, but not sure how they will develop her. The moment when she said to Pearse (incidentally I thought the actor resembled Willie rather than PH) that she was happy to play her part and he then dismissed her was good to see. Not good that it happened but good to have that shown early on. Let’s see how that develops.

Very good that the different groups involved are being flagged up – Irish Citizen Army, Volunteers, hints of the IRB (although I don’t think they were named – I might have missed it) – I know for those of us who have read and studied this period, such highlighting isn’t needed, but for people who didn’t know the rebels’ backgrounds, it was probably useful. Making the main real-life protagonists into background characters works well I think, I see some people commenting on social media that they wanted to see more of the Countess or more of Connolly, well I like the idea of focusing on those who are lesser known. Good to see some slight nods to social history as well, mentions of separation money etc.

It is a dramatisation not a documentary and so can take licence with some things that an account claiming to be strictly factual cannot. I will continue to watch it because even though I know how the story ends, I want to see how they show it. Verdict on episode 1 – good, generally well acted, mostly looks good (Dublin could do with being so clean today!), not perfect, but main thing is its not one dimensional.

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.