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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….

Causey Christmas Experience

Why am I writing about our visit to Causey Farm LAST Christmas you might wonder? Two reasons: one, I needed to free up storage space on my phone and there were still pictures from there on it and two you won’t find it until that time is upon us again.

This was the first time we had visited any of the Christmas experiences, and our daughter was 8 when we visited last year. Not that we are grinches or anything (actually I LOVE Christmas but don’t want to see stuff in the shops until after Hallowe’en) but as our daughter has a significant level of disability and does not understand anything much about Christmas, I was reluctant to go in case seeing lots of other (smaller) children really getting into the whole spirit would be too hard. Minding myself is an important part of being a carer after all 🙂

However, Causey Farm do a day at their Christmas Experience for children with special needs from the local area – as far as I can make out they contact local organisations and families get invited that way. We were invited by the respite home our daughter attends. As Causey Farm is only a few miles from us we decided to give it a go. I want to point out here that it was not a free event, all families attending paid.

It was a cold Saturday when we headed over and we were all wrapped up very warmly – and I’d definitely advise wrapping up well, there is a bit of walking between the various sheds and you are on a farm in Meath in the winter. Wellies or at the very least old shoes are also a good idea. Our wee woman is a wheelchair user so she was grand and snug with her lovely wheelchair blanket bag.

Well, it really was a great afternoon. The tour takes you through a number of sheds and buildings starting where the story of Mary and Joseph is told and if my memory serves me well we all sang ‘Away in a Manger’. There are lots of opportunities to see and pet the various animals – and there was even a camel!!! A real live camel in north Meath was not something I ever expected to see.

The passage of time has dimmed my memory for the exact order of events, but you move on to a traditional Irish kitchen at Christmas where the bean an ti talks about Christmas traditions and we all got to stir the pudding.

Stirring the Christmas pudding at Causey Farm

Stirring the Christmas pudding at Causey Farm

One of the next rooms is the post room where the elves (who are just brilliant, I don’t know where or how Causey find their staff but these guys were excellent) go through the letters to Santa and ask if the people are naughty or nice. This largely went over our lassie’s head but she certainly picked up on all the giggling and excitement. As for me I was too busy laughing to take any pics.

We visited Mrs Claus and helped her pack Santa’s bag for his trip around the world and then we went to the elves’ workroom. Now this really was superb, its a big old room decorated and laid out with all kinds of Christmas gifts and goodies but the clincher for me were the lists of names festooned all around the room so that every child could find their name (on the nice list of course!) The children are all taken upstairs and slide down into the elves’ workroom but obviously this wasn’t an option for our girlie as the stairs were too difficult for her to manage. It meant that she got extra time to find her name on the list though 🙂

On the nice list  - where else?

On the nice list – where else?

Then we all go through the elves’ door into Santa’s parlour. There are benches for all the children to sit on and listen while the elf (I think ours was called Bubbles) explains to us that this is a big treat to be in here and we have to be REALLY quiet or Santa will hear us. Well you can imagine the kids’ reaction to that! The excited chatter and laughter built up and built up and then! A rope ladder appeared in the fireplace and sure enough the man himself literally came down the chimney. I know I wasn’t the only adult there that day with tears in their eyes at the awe and excitement this produced in the children. Even our little girl, although she didn’t fully understand, knew that something special was happening.

Next we all followed Santa into another room where in turn each family was called up and all the children got a present. Herself can be a little shy at times and doesn’t have many words but Causey’s Santa was superb with her.

Hello Santa

Hello Santa

The smile on her wee face as she met Santa was lovely beyond words and remains one of my favourite memories. As you can hopefully see Santa came over to her rather than us all getting onto his sofa, which was much easier for her.

causey-2015 The day finished off with complimentary hot drinks and scones back in the main building and for herself a little snooze! tired-after-a-lovely-day

I would recommend the Causey Christmas Experience to anyone. My only reservation would be the price. For families of four children and two adults you are looking at over €100 which is a pricey enough afternoon. But it really is so lovely. I wouldn’t go back every year, I think the magic might get a bit diluted if you did that, but if the time ever comes when our darling girl understands all about Christmas then I don’t care if she is 20, I’m bringing her back to Causey Farm to see Santa coming down that chimney.

Click here for information about Causey Farm’s Christmas Experience

#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!

Why I won’t stop crying

I don’t know where to begin or even what I want to say. Like so many others I feel utterly useless today. Here in the privileged bloated West we have seen a picture of a little boy, a beautiful little boy lying face down. He looks utterly relaxed, his hands turned palm up, his wee feet stretched out. I’ve seen my own beautiful child lying in a similar position so many times. The difference is she was in her cot and then later in her bed, or on our sofa. Safe and warm in her own home. But that wee boy is lying on a beach in Turkey and he is dead. He drowned as a refugee trying to escape to safety. His brother and his mum died along with him.

But what can I do? That’s a question many people ask themselves about all the pain and suffering we see in our world. Can I stop the refugee crisis? No, of course not. Can I go to help? Apart from the fact that a well meaning but untrained volunteer is the last thing that refugees need in their faces, my own family circumstances mean I can’t travel to Syria or to Lebanon or to Calais or to any of the many many other places around the world where my neighbours need help. I can donate money to various charitable organisations, I knit hats and jumpers for a little charity in Turkey that helps Syrian refugees in camps there. I can help organise collections of much needed items in my local community and get them to people who can get them to Calais. I can organise grocery shopping for the women’s refuge in my county. I can go to coffee mornings to help children with illnesses and disabilities. I can do all of these things and I try to.

I wonder is the most important thing the one that in many ways is the easiest to do.  I can and will bear witness.  I will not turn away when I see these pictures.  I do and will continue to get angry, to question, to ask, to read, to listen, to think and to learn about why such things are happening and what we as a world can do to help our sisters and brothers.  I encourage, no I implore everyone reading this to do the same.  Don’t turn away and bury yourself in a superficial world of entertainment, so called reality TV, celebrity happenings and other amusing stuff.  Yes that all has a place but don’t ignore what is happening in the world.  Don’t think you can’t do anything.  You can.  You can bear witness.  You can get angry and demand answers.  You can let those in power know that you are watching.  For those of you in Ireland, you can sign this petition and demand that our Government allow more than a few hundred refugees in to our country.

I cry every time I see that picture of little Aylan Kurdi. And then I get annoyed with myself and vow not to cry any more, my tears are useless, they don’t achieve anything. Then I realise that the day I stop crying for the wrongs and injustices in this world is a bad bad day.

read feel act
POSTSCRIPT:

Members of the Irish Parenting Bloggers have come together in a blog-hop to share their thoughts on the current crisis and to let people know what they can do to help. Click on the link below to read our posts and please feel free to spread the word by sharing on social media platforms using the hashtag #ReadFeelAct.



If you want to do something to help, here are a few suggestions:

  1. Sign the petition to ask the Irish Government to do more to help. Just click here.  For anyone in the UK you can sign a similar petition here
  2. There are numerous charities helping the refugees crossing the Mediterranean sea. Please, please donate even a few euro to Medecins Sans Frontieres, Amnesty International, or Trocaire.
  3. Alternatively, if you’d like to be part of a very worthy organised event the Irish Parenting Bloggers have organised a virtual coffee (or tea!) morning – check out and ‘like’ the Facebook Event page here  –  to help raise much needed funds for the Ireland Calais Refugee Solidarity Campaign. On Friday, September 11 just pour yourself a cuppa; go to http://www.irelandcalaisfund.ml/ and make a donation to the fund (we suggest €5 per person but please give what you can) and upload a screenshot of your donation plus a pic of yourself enjoying your cuppa to your Facebook page or other social media channels and tell your followers all about it.  Then just link to this event to encourage your friends and family to take part too.

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!

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.

 

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

 

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.

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!!!

A big day today and I’m a quivering wreck

Parenting brings with it lots of ‘big days’ – first day at preschool, then at big school etc, and these are bring up a huge swell of emotions for parents. I bawled on my daughter’s first day at preschool – but not until I got back in my car. She didn’t turn a hair when I left. Big school was very emotional but not teary. But today brings another big day for our little family and I freely admit I’m a wreck over it.

Our feisty little big girl is going to overnight respite for the first time. This will be the first time she has stayed anywhere without Mum and Dad. This will be the first time anyone else will have ever put her to bed or gotten her up in the morning. She has been to the respite home a good few times now and loves it, so she is familiar with the place and with the team there. They are well used to her little ways and how she communicates etc. She left on the school bus as normal this morning and won’t be home until tomorrow afternoon.

I know in my heart of hearts she will be fine. Our pixie has always adapted to change well, and while she likes her routine, she can cope with changes. She will be at school today and tomorrow which she adores. But I’m very nervous, I know I am probably projecting, but I keep hoping she settles ok, that she sleeps ok, that she doesn’t get upset and start looking for us.

This is a huge step for us all, for me in learning to let go that little bit more, for our daughter in developing her independence that little bit more and for us as a couple to get used to having free time. We have never had a night away from her together since she was born. I have spent the last couple of days thinking of things to do to keep myself busy. We have been looking for respite care for the last year or so and I know it is a hugely important and good thing. But now that it is really happening……. eeeeek.

I’ll let you know how we all got on.

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