Iris Dances Around the Room

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Nystagmus – a mouthful of a word.  A condition I am still trying to understand.  But a condition which has effected me along with albinism since birth.  Medical and health professionals describe Nystagmus as “an involuntary, often rapid, movement of the eyes”.  This description will ring true for so many sufferers of nystagmus around the globe.

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There are a number of nicknames given to it; ‘dancing eyes’, ‘wobbly eyes’, ‘shivering eyes’, the list goes on and on.  For me, I personally used to call them “my shivery eyes”.  And I was really lucky because all throughout my schooling, my friends were used to it.  Once or twice we even used it to scare a stranger – my shakey eyes were my party piece if you like!  We used to have great fun with it.

It was in later life that I began to have a few issues with it.  Teachers would often remark that I ‘had a dreamy look’ while they taught me.  This seems to be a common complaint of educators of children and young adults with nystagmus – the lack of eye control and increased movement leads teachers to think you aren’t paying attention.  This is further compounded by additional sight issues if they ask you to go through what they have just written on the board – nine times out of ten you obviously cannot read it.

On a personal level, there are definitely things I find will exacerbate my nystagmus.  In general, most people tell me it isn’t very noticeable unless I am straining to focus on something.  But if I have been stressed out – exam time for example – the shaking gets far worse and becomes very noticeable to myself and others.  Similarly, if I have had a run of 2 or more nights where I haven’t had enough sleep, its a similar situation – more pronounced shaking.  The video below was recorded during a week where I was heavily reliant on my laptop – spending almost 5 to 8 hours finishing assignments.  All eyeball and eyelid movements you will see in this video are entirely involuntary.

This was definitely one of those times where it was at its worst.  But as I said, most of the time, those instances are few and far between.

So, have I described nystagmus correctly? And how do my readers find it affects them or their child/children?  I’m sure its not the same for us all.  For further information, check out the Nystagmus Network!

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10 Things to Remember During Leaving Cert Season

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1.  For the love of God, STAY CALM!

Everyone will tell you this; your parents, the local priest, all your teachers, and especially your friends.  In fact, you may have friends that will brag about how calm they are.  Remember, this is a front they’re putting on.  Its near impossible to stay perfectly calm before you sit the Leaving – it is kind of a big deal.  But don’t let it take over your life.  At the end of the day, it’s a long exam over a few weeks in June.  Think of it that way, and don’t put the ‘college pressure’ on while your sitting it.

2.  Do not, under any circumstances, organise a ‘study group’ with friends. 

Harsh but true.  Study groups during school hours are okay, and some schools encourage students to study in groups during free periods.  But a group with anymore than three people will end in a gossip session about who wore what, or how last weekends rugby game went.  It’s even less productive when its a group of close friends.  If you do set up a study group, pick two different topics to cover over 90 minutes and take short breaks.

3.  Limit your procrastination.

Procrastinating over study will be a problem in your academic life forevermore.  And if you can find a way to avoid it, please let the rest of the world know!  It’s pointless advising you not to procrastinate, so why not procrastinate in a productive manner?  If you want to go shopping for something, make a list of household or personal items you need, and time yourself to see how fast you can get around the shop or department store.  Maybe a good use of procrastination time would be to clean out your room or wash the family pet?  Again, limit your time.  Even organising subject notes is a good use of procrastination!

4.  Eat well.

Study fuel is key during Leaving Cert season.  Fresh fruits, cereal, flavoured milk and smoothies are all study favourites, and for the most part they can be healthy too.  The key to study fuel is twofold; it must be tasty and it should be healthy and energising.  Avoid heavy meals and foods that encourage bloating like bread or a greasy bag of chips until after an exam.  You don’t want to be sitting in the hall trying to write about Shakespeare and growing a food baby at the same time!

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5.  Schedule some nap time.

There’s only so much study fuel you can consume during the weeks long study regime before you’ll start to burn out, so don’t forget to set aside some nap time during study time too.  The most productive naps are the ones that last between 10 and 20 minutes, so you can stay fresh and alert without getting too sleepy.

6.  Make up rhymes to remember tricky formulas or theorems. 

This is a great way to remember phrases or formulas for your Science, Maths or English papers.  The best thing to do is try and make a rhyme out of a short phrase, or better yet even sing information along to your favourite songs.  For example, if you want to remember the stages of mitosis, the phrase ‘I Party Monday And Tuesday’ is handy – Interphase, Prophase, Metaphase, Anaphase, Telophase.  You’ll be rhyming and learning in no time!

7.  Buy two of everything. 

Stocking up on study supplies is crucial for surviving the Leaving Cert.  Past Leaving Certee’s will tell you numerous stories about how they ran out of ink or how their calculator battery died half-way through an exam.  So make sure to have a well stocked pencil case, the Noah’s Arc of pencil cases if you will.  Two biro’s of each colour, two pencils, two erasers, two rulers, two compasses, and two calculators.

8.  Make plenty of flash cards.

Well-written flashcards are the saviour of any crammer in the run up to an exam.  Most people will use them to remember key points in all subjects, but a hidden trick is to devote some cards to themes you know will come up, and themes you can’t always remember correctly.  They will come in handy for younger siblings studying after you too, which earn you major brownie points with the parents.

9.  Pack your bag the night before.

This advice from the mouth of Irish Mammy’s all across the country, but to give them their due, its true.  There’s nothing worse than the mad rush the morning of a maths exam when you’re trying to find your pencil case or a calculator.  They were both on the table the night before and have now vanished – are there Borrower’s living in the house?!

10.  Be kind to yourself

Goes without saying really, doesn’t it?  You’re doing your best, be proud of it!

And remember…..

All this advice applies to studying when you’re in third level too!!

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The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here.  We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his.  While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from.  During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”.  And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to.  So here goes…

The Do’s:

  • Ask me about albinism, and my sight.  Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is.  And I’m happy to share this information with people any time they ask.  I’ll always be happy to do that.  The only way to raise awareness of any impairments and conditions are to be open and talk about them.  And in my experience, people always love to learn.
  • “Who does your hair? I want to go that colour”.  I absolutely love this question, and the follow-up of “how do you mean its your natural colour”?  I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots.  You have to take the good with the bad, right?
  • Offer some help.  This isn’t a patronising thing to do, from my point of view anyway.  If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help.  It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand.  Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost.  If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

  • Stare.  How many times do I have to say this?  I feel like a broken record.  I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare.  Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day.  It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now.  Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand!  But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point.  Like the guy who is staring at me in the library right now as I write this blog post.  Irony eh?
  • “How many fingers am I holding up?” Irritation level 100.  In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me.  I’m open about my condition, as I’ve said above.  But this is a line I feel people shouldn’t cross.  And I’ll normally respond in a way befitting that.
  • Patronise.   This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious.  And it isn’t something that annoys me as much as the previous two points.  What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”.  People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train.  These are the people who mean well by expressing their happiness that “someone like you” can be independent.  As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences?  What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues?  I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different.  Looking forward to some replies!

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Well That’s School Covered

For me, there was always a massive difference between education and school.  I’ve always loved being educated and learning new things, but I never, ever liked school.  I think it was mix of things; part of it was the simple fact that school for a child like me wasn’t school for a typical 4 or 5 year old.  And another side of it was that I was probably one of those kids who just didn’t enjoy school anyway, regardless of my needs.

 

School for a kid like me was awkward and full of questions related to that awkward ness.

“Mammy, why can’t I write things down from the blackboard? Everyone else can”

“Mammy, why do I always have to sit at the front all the time?”

“How come no one will pick me for their team in PE? Why am I always left until last?”

 

I started school in the mid-nineties, and I pull no punches when I say that there was next to no supports for a child with special needs.  There was nothing.  Most of what I remember in the way of supports was a few hours of resource a week and having to use vision aides during class time.   And they were really awful aides to use! One was a hand held magnifier that was quite thick and round, really it would’ve been better used as a paperweight!  Another was a handheld telescope type thing for seeing the blackboard or whiteboard.  I mean, imagine being 5, 6, 7 years of age and having to use stuff that makes you stick out so obviously?!  Because kids can be harsh, it’s just their nature to say what they think.  So a lot of the time I’d do my best to avoid using them, I wanted to be just like my friends and my way of doing that as a child was to pretend nothing was wrong and that I didn’t need these things.  That culminated in me falling behind, in terms of spelling and maths – things that are primarily done on a blackboard.

 

That being said, things definitely improved towards the end of primary school, when Special Needs Assistants (SNA’s) were introduced to primary and second level.  The help that comes from someone sitting down and taking notes for you when you’re dealing with a severe vision problem can make a huge difference to learning.  And I can say without doubt that if it wasn’t for the help of my SNA’s (most of which I’m still in contact with because you do become that friendly), I probably still would be that little girl who struggled to spell properly and couldn’t do maths very well.

 

College.  Well now, that’s a whole different ballgame altogether.  I can truly say that it was in college that I really came out of my shell.  It’s a total cliché but entirely true!  It’s where I really began to enjoy being “in school” as opposed to being educated, I can now enjoy the two hand in hand – and that’s how it should be!  Now, I’d be lying if I said it was a breeze, it’s not.  The nature of my vision problem dictates that my eyes “get tired” as the day goes on and that’s an obvious problem when you have days in the week where its 9-5 lectures.  The college system of applying for help is different and I think that has a big impact.  If you enter as a DARE (Disability Access Route to Education) student, or when you enter normally you can register with your colleges’ disability support service.  They’re the ones responsible for ensuring your needs are assessed and catered for.  In my case, most supports I’ve needed or asked for I’ve been granted, which is mostly a note taker, exam supports and sometimes learning supports.  Learning supports might seem like an odd one because I have a note taker but it’s not always easy to gel together what’s on lecture slides to the notes, especially when you’re mostly relying on sound and speech to learn like I do.  I found the social side of college much easier than the clique type thing that goes on in secondary school.  In secondary school, everyone’s fighting to become top dog and cliques form according to music taste, fashion sense etc.  Whereas in college, you have your class, societies and clubs to get involved in, and it’s much easier to integrate that way.  You (generally) lose that self-consciousness you had as a teenager and become more comfortable in your own skin, disability or no disability.

 

To be honest, I do think some of my dislike to school could have been avoided had my parents known what supports I’d need.  Special needs education was only really in its infancy (pardon the pun!) when I started school, and there was a definite “them and us” mentality when it came to approaching the Department of Education for supports.  Because most parents with their first child in school with special needs won’t know what supports their child needs.  Of course they don’t, they’ve never dealt with this before!  The parents are trying to navigate what supports their child needs and how to get them, and they generally did that with the help of a department official who was constantly worried about their bottom line.  Simply put, when I was in school, the parents and kids never had an advocate, there was no third party there to say “I think this would help your child – let’s apply for it”.

 

When I saw the NCSE (National Council for Special Education) had printed a booklet to help parents out with this in recent weeks, I was delighted.  I really was!  It’s great that parents will finally have impartial information from the body that is there to support them and their children during their school years.  Having read the booklet myself, which is available here, it’s extremely comprehensive.   The moderators have fully explained exactly what services children can avail of, and what they may need to do to get these, in terms of evidence.  They are very honest about what services a child should or should not get, and they deal with real practicalities for children starting school with any kind of special need.  I think this type of publication will go a really long way to helping give parents a direction when their kids are starting school, which is a massive help to the child.  However, one thing that the NCSE has failed to address within this publication is the vast amount of cuts across the board to children with all manner of special needs.  With the number of cuts to special needs children’s’ supports in recent education budgets, its vital parents begin now to acquaint themselves with the supports their children will need along the way.  Above all, parents are the ones who will do the most amount of fighting for their children (whether the kids ever realise this or not!), and they have a better chances of winning battles with the Department of Education when they’ve fully equipped themselves with the information.

 

I’d like to finish this blog post by asking for some feedback.  What are your experiences of dealing with the support networks for your child, or perhaps for yourself?  Were there some major roadblocks you came up against when fighting for your right to education?  I’m really interested to hear the stories of some others and I’d love to get a bit of conversation going, especially for something as vital as this topic.

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Me & My Albinism

If you took a look at me here’s what you’d see; an average looking 21 year old student who looks a bit younger than what she is, and is a little too short for her age, who sometimes looks grumpy but has an infectious smile and laugh when you bring it out in her. You’d see a girl with golden blonde hair, blue eyes and pale skin that is, more often than not, covered up by makeup that’s a few shades darker. One thing that would not be obvious at a glance is my hidden disability.

So what is my disability? A mouthful of a thing called “occulocutanious albinism”. A condition that primarly affects my sight but also gives me pale skin and stops me from tanning. Its pretty severe; I can only read the top letter of the eye chart in a doctors office – and that’s on a good day! Strong sunlight, my workload and the length of my day all have an affect on how “good or bad” my eyes will be during the day. It sounds pretty awful, and when a doctor or nurse who doesn’t know me reads this on a chart, I get look of pity which is unbelievably uncomfortable! It’s genuinely not that bad though – I absolutely love my life. I love my family, my friends, the course I study in college, the politics I’m involved in and everything in between! Don’t get me wrong – it’s not all sunshine and lollipops because I do have some awful days. But don’t we all?

What I’m trying to achieve by keeping a blog is to reach out to others like me, and others who are just interested. I want to let people know what college and life in general is like for someone looking out at the world with imperfect eyes. Hopefully I’ll achieve this without rambling too much and you’ll all find it interesting too!

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