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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