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….

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.

Parenting · Special Needs

And I would drive 500 miles…… starting school part 3

With all due apologies to the Proclaimers, this song has been the soundtrack to my life this last 6 weeks. I wrote before about our darling girl starting big school last month and we are delighted that she has settled in really well. She likes her new teacher very much and is very happy in her wee class of seven. Now, when the subject of school started to loom closer in our lives we realised very quickly that we had no choice in where our daughter would attend school. Her level of intellectual disability is such that she is not able to attend our local mainstream national school. I firmly believe that all children should be able to attend mainstream school as I feel it is the only way we will achieve full acceptance of people with disabilities in society. And before anyone asks, no I don’t feel we are there yet. But that is a long long way away, and so we had to accept that mainstream education is not an option for our little girl.

That was fine, we had heard very good reports of the school and on going to visit it we were very happy with what we saw, nice facilities, very pleasant and committed staff and generally a good feeling. Unfortunately the school is 26 miles away from our home – a long way for a wee 6 year old to have to travel. But it is the only school in Co. Meath that can meet her needs and so we filled in the relevant forms and in early June we were duly notified that she had secured a place.

So with some considerable excitement we started to prepare for her first day at big school, new uniform (and see here for more on THAT subject), we began the process of talking to her about starting big school and we filled in an application for school transport. I said above that the school is 26 miles from our home door-to-door and our daughter is a wheelchair user and ideally should travel to school in her chair. So I assumed it was just a formality, filled in the form and waited.

And waited. I won’t bore you with all the boring details but suffice it to say that by 2nd September our daughter still did not have a bus place. And she was starting school on 3rd September. Imagine then my panic and feelings of utter dread when I was informed that day that it might take “a couple of weeks” for her place to be sorted out. I did not relish the thought of driving 52 miles each day. I most certainly did NOT relish the thought of spending all day 5 days a week in Navan (sorry I’ve never taken to Navan!) as there was no way I could afford the petrol to travel home and back again between school times. But I told myself it was only for a couple of weeks, I’d just have to suck it up.

Well the couple of weeks dragged on. And on. And bloody on. And finally after 33 days and 1716 miles (way more than the 500 of the song and even than the 500 more), our daughter travelled to school on the bus for the first time today. And by goddess was I relieved!! But I’m bloody annoyed that it now transpires the reason she didn’t have a bus place on 3rd Sept was because some pen pusher somewhere neglected to tell the relevant people that she needed a wheelchair place on the bus. This was despite me writing in BIG BOLD LETTERS on the original application form that she was a wheelchair user and needed a wheelchair place.

So now she goes off quite merrily on the bus and back home again in the afternoon and I have to apply for partial reimbursement of my petrol costs. I wonder how long THAT will take to come through????

Parenting · Special Needs

Tugging at the heartstrings – starting school part 2

Following on from my post a few weeks ago when I was getting ready for my darling girl to start big school here, I fully intended to write a few posts on the whole starting school phenomenon. However because of a sizeable glitch in proceedings (of which more in another post) I have not had time to do them, so I’m belatedly returning to the topic.

And here we go….. so our amazing wee girlie is 6 now and has recently started big school. In her case its special school – more of that in a future post – and she seems to be settling in really well. Her educational/separation from Mum journey began with two mornings a week with a childminder which she took to really well aged 3. A few months later she started attending a nearby mainstream preschool where she had the help of a lovely preschool assistant (essentially an SNA). F adored her time here and I loved how happy she was and how completely accepted she was by all the children there. Although the first day she had her new wheelchair there (a couple of weeks before Christmas that year) a couple of the other girls asked their Mums could they have a chair just like F’s for Christmas – oops!!

She stayed at the preschool for 2 years and on her last day both her SNA and I were in floods of tears. My heartstrings took a pounding that day! Her majesty on the other hand was perfectly happy. She has always taken to change really well thankfully.

During the last year at preschool she started attending a special needs pre-school unit two days per week. Again, she settled in very well, it was more of a challenge for her this time as she was there for a longer day and was mixing with children who also have special needs. But true to form F just took it all in her stride.

September last year she started attending the unit 5 days a week and travelling there by bus so this was a big big change. You won’t be surprised to learn that she met it all head on and bounced merrily along. While I was quite used to her being away at this stage (and loved every minute of it!!) the first day on the bus was fairly emotionally challenging for me but I didn’t realise just how much until the driver rang me after leaving her at the unit. He told me she’d been singing on the bus all the way and was in great form. I thanked him for ringing (it was such a nice thing to do) hung up the phone and promptly bawled. A cuppa and biscuit later and I was grand.

So I figured the old heartstrings had toughened up pretty well. F had a great year, made some really good progress and all was set for her to start big school. There were some very special moments during the year – seeing her go horse riding was one, some of the artwork and photos that came from the unit were lovely, I will admit to a wobbly lip when she rang some bells (with help) when the Garda Band came to the unit to entertain us all for family fun day. But nothing too hearttugging.

But then on her final day at the unit they had a party and there were presents for the children moving on to big school. And she came home on the bus tired and grubby but very happy with a big bag of goodies. Amongst them was this picture

Grad photo Bailis

and the heartstrings gave the most almighty lurch. My baby girl is growing up and moving on to another era, another episode and lots more challenges. And guess what? She’s facing them all head on.

Parenting · Special Needs

Crests and costs – starting big school part 1

Next week our gutsy feisty little girl will be starting big school. A momentous occasion for any family. I have lots of emotions and thoughts going round in my head about this event in our lives, but for today’s post I’m just going to focus on one element of starting school – or indeed going back to school – that hadn’t really occurred to me. The cost of it all. Now anyone reading this who already has one or more children in the Irish education system will be well aware of the cost involved. But for anyone whose children aren’t at school yet or who doesn’t have children, hold on to your seats!

Ok, cards on the table. F will be starting in a special school next week, it is the only place suitable for her needs. (I am an advocate of mainstreaming but my daughter can’t wait 20 or 30 years until that is possible for her – will be coming back to this in another post.) She cannot read or write yet and is not learning at that stage so we don’t have books to buy. I know from other parents that the cost of books can be huge, not all schools operate book rental schemes and when they do it doesn’t cover all books. And then there is the workbook issue – other parents more qualified than me are writing about this as part of the Irish Parenting Bloggers blog march this week – but suffice it to say that parents often cannot hand books down the family because they use workbooks now which the child writes in and then can never be used again. This raises the question with me why are workbooks needed? What ever happened to a text book and an exercise book (as I called them growing up in England) or copy book (as they are called here in Ireland)?

Anyway I digress, back to our situation. So no book costs, ok one big outlay we don’t have – yet. We got a letter a while back stating that the cost of art and stationery supplies was €35 per child per term. At three terms a year that’s €105. Not a vast sum of money I grant you but enough when you have to find it. However, I have no problem with paying it – I would prefer that schools were given enough money in their budgets to meet all these costs but that’s not the case at the moment.

So we have a running total of €105. F’s school offers optional dance/movement sessions for the children at €40 per term. We have opted for this as F loves music so much and we want to expose her to as many activities as possible. So there’s €120 more. Total cost towards our daughter’s education for her first year in big school €225. Not bad at all when I hear other parents having figures of €1000!

But then came the details of the uniform. As a teenager I railed against the idea of a uniform – it suppresses individuality, its all about conformity etc etc etc. As a mum I love the idea of a uniform! F can be hard on clothes and my laundry load is always at least 60% her clothes. The school informed me which shop the uniform had to be bought in, so off I went last week to purchase my daughter’s first school uniform. Oh I was so disappointed in it! I will be coming back to the uniform again in another post, but in the context of school costs, my main annoyance is the cost and the crest. Her uniform consists of a sweatshirt which has the school crest embroidered on it, sweatpants and a polo shirt. Total cost €57 (I bought two polo shirts cos she’ll never get a week out of one.) €45 for a bloody jogging outfit and €6 each for 2 canary yellow polo shirts!!!! The quality isn’t great and certainly not worth that money in my opinion. But that’s the uniform and that’s what she has to have. I swallowed my annoyance and paid over the money. So when a friend told me that Penneys have navy sweatpants for €5 I nearly went ballistic. Y’see you can’t just buy the sweatshirt of F’s uniform, its all or nothing. And why? Because of the damn embroidered crest. This same friend has removable crests that she sews onto her son’s uniform – he attends a special school in a different county.

Why the need for an embroidered crest on a school sweatshirt? Why can’t the school get them made up and sell them to parents to sew on to the generic school clothes available in department stores everywhere? €45 for the sweatshirt and sweatpants. And remember too that families who have a child attending special school do not usually have another child attending the same school. So they can’t even pass the uniform down to the next one. They can’t be tumble dried and as I said F is hard on clothes (she crawls and bumshuffles a lot) so I’m going to be washing these two or three times a week and then frantically trying to dry them ready for the next day. More fuel costs. As a single-income household I cannot afford to fork out €90 for two sets of uniforms at the start of the year. (I’m trying not to think about the fact that F is growing fast and may well need another uniform before the year is out)

My parenting journey is different from most people’s because of F’s disability. And yes we aren’t looking at anything like the back-to-school costs that some parents are. But its still an added pressure. I would like to hear any school – special or otherwise – justify the need for the specific uniform, particularly when it is extremely unlikely it can be handed down a family. And families of children with special needs generally don’t have money to spare…..