Beyond The Blonde

Albinism in Your Skin

This one is especially for my friends in the Albinism community. I think we can all agree that – while the blonde hair is a blessing – the translucent skin is a curse! Especially when you have redness on top of that.

Covering up the redness with tan – do love this gúna though! It’s from Vanilla Boutique in Fermoy

I’m not sure about the rest of you, but I purposely keep my arms (in particular) covered. The problem with translucent skin is that redness shows constantly – I know for me, it means my arms end up looking like someone has slapped me, and the rest of my skin is deathly white! I’m so conscious of it, and the only way I’ve covered it before is with a spray tan. But constant spray tanning isn’t pracitical – or financially healthy!

So a few weeks ago, a friend gave me some bottles of a new skincare range that she’s been using recently – a range called Ocean Bloom. Usually, I won’t try a new range even when I do get a recommendation – my skin is so sensitive and the smallest thing can set me off with a rash or reaction. But I must admit, when I checked out the ingredients on their website, I was impressed. Their moisturiser has an SPF – super important for someone with albinism because of our lack of pigment. No parabens, no nasty sulphates or silicones – and all organic ingredients. They don’t test on animals either.

It’s great that the Ocean Bloom range isn’t tested on animals – I also just think this pic is super cute!

So I thought “I’ll give this a go!”.

I started out with the moisturiser and eye serum. Of course, I patch tested both first, and no reaction so I was ready to go. Woohoo!

Within a week, there was a clear difference in the redness of my face, something I’ve always had trouble with and something I put down to my albinism. The red pigment and hue in my face started to fade – not entirely – but noticeably enough. I’ve been doing a bit of Google’ing, and seaweed (the main ingredient) reduces skin redness, inflammation, and is a natural way to hydrate skin. So maybe this explains it? All I know is the redness is going slowly, and I’m super happy about that!

Some pics I took of the moisturiser, just for an idea of the consistency

Similarly with the eye serum, the dark circles around my eyes are gone way down too! Again, these circles are something I used to put down the strain on my eyes by everyday tasks – I’m sure you all know how difficult it can be to work around nystagmus. I felt it was my nystagmus made these circles worse – there’s a lot of pressure on my eyes day to day. So obviously I’m super happy with this too. It’s nice and soft around my eyes too – again, I’m so careful with what goes near them because it’s important to keep them as healthy as possible.

When these results were so good after just a week, I started using some of their other products – the main ingredient in the range is seaweed from West Cork. So it MUST be good for the rest of my skin, right?

Remember what I said about the redness in my face being reduced with the moisturiser? Well, the body butter had the EXACT same effect! I can only presume its because of the way seaweed reduces redness? Or maybe its because something soothing is on my skin. Whatever the reason, it basically means I don’t have to keep my arms constantly hidden if I have no tan on! R-E-S-U-L-T!!

I’m always the first one to share any good products I find – especially when it comes to something that helps with the lesser effects of my albinism. Trust me when I say this really helped the redness on my face, that I think is mostly down to my albinism. The same with the redness on my arms and parts of my legs. It hasn’t disappeared, but there’s a huuuuuge reduction in it. Hopefully as I keep using it, it’ll continue to reduce it. I’ve noticed that my skin is a lot healthier in general since I started using the moisturiser and body butter.

My favourite delivery of ALL time!!!! How cute is the packaging?

I’ve included links in this post if any of you want to have a look at Ocean Bloom’s online store, you can. If you guys end up trying these products too, please message me and let me know! I think it’ll be really beneficial for people like me with albinism who suffer from the same type of redness.

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Smear 4 Smear – My First Smear Test

My letter from CervicalCheck arrived around mid-December, reminding me that I was due my first smear test soon. These reminders are posted out to each woman in Ireland shortly after her 25th birthday – and I must admit I was surprised at how timely my “smear invite” arrived! From what I’d heard from other friends, aunts, and my mum, I knew it would take something like 3 weeks to get the results. So I decided to book in for mine in January, so as to avoid any unnecessary worrying over Christmas time.

So that was it – my first smear test booked. All I had to do was wait until the start of January. I’d booked in with a female doctor at my GP’s practice, and I’d seen her a few times before for the inevitable “women’s problem’s” so I was comfortable with her. I mean, your first smear test is kind of a thing, so you need to know whose doing it I think.

So anyway…. 2.20pm, just checked in for my Smear at my GPs surgery. I’m nervous, this is my first Smear Test. I hope it doesn’t hurt but I know it’ll probably be uncomfortable. I’ve now lost the letter for my smear test with the tracking number on it. The panic looking for it today hasn’t helped my humour at all. Hopefully the doctor can still do the test with my PPS number and ID number for my Smear, which I was able to look up on the Cervical Check website – here’s the link, just incase you lose yours too.

Oh my nerves, I can hear the clock ticking behind me and everything. Now I’m starting to think silly things: should I take my socks off or leave them on? Does she know I’m blogging about this? I hope she won’t mind. What if I do it wrong? Ugh it’s a smear how could I do it wrong?!! The doctor is the one doing it, all I have to do is lie back, relax and… think about something else. Like what though? The gym, I’m going to the gym later so I’ll think about that. What if I’m sore after the test and I can’t go to the gym? Ok I’m not gonna think about the gym, I’ll just go in there and empty my mind.

It’s 2.29 and no sign of the doctor, but my appointment is at half past. I can’t handle the suspense of this I just want it over with….

I was called at 2.31, and out the door and all by 2.40…. What was I so worried about? The female doctor called me into her room, and asked if I’d ever had a smear before. I hadn’t. So she explained to me how the test was done; that it would feel like a bit of pressure, and that I’d be waiting six weeks for results. She asked if I was still happy to do the test and if I felt comfortable. I did, but I was still nervous.

I lay back, and allowed her to do the test. Its basically very similar to a pelvic exam, except that they use a little brush type instrument to take a few cells from the cervix. I’m squeamish, and it didn’t bother me in the least. It didn’t hurt either – like I said, it felt like pressure from a pelvic exam. And that was it. It was finished.

The reasoning behind writing about something like this was to try and normalise it for other ladies, and to take away the fear around it. As you’ve read, I was so nervous – and it turned out I had nothing to worry about!

I’ll give an update on the Beyond the Blonde Facebook page when I get my results in a few weeks – but I’m not in the least worried. Something to note though – a smear test only tests for cervical cancer or changes in the cervix. It doesn’t screen for other gynae problems, like fibroids, or gynae cancers like ovarian cancer or endometrial cancer.

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2017 MUST Be Better

2016 was a really hard year, I think we can all agree on that. I know from me personally it was probably the hardest year I have had to deal with. But this is a new year so I don’t want to focus on the bad –I want to focus on the good that is to come.

If 2016 taught one thing, it’s that your perception of any situation is everything. The way you perceive a situation will dictate the way that you handle it. So I knew it was important to go into 2017 with the positivity that I would carry with me for the rest of the year. Start as you mean to go on – isn’t that what they say?

On Monday January 2 I did something I don’t normally do. I organised myself for the next morning; clothes selected, make up at the ready, handbag packed – I even picked out matching socks! For 2017, I wanted to make more of an effort with my appearance. I spent most of 2016 with my hair in a messy bun, makeup-less, and wearing clothes that didn’t even match at times. In 2016 sometimes I just didn’t care. But this is a New Year so I’m going to care more. I’m happy to say that this is one resolution I have kept up so far. And considering we’re only a week in, that’s longer than most of my resolutions have lasted previously.

The next day saw one of the more dramatic changes – a good 12 inches was cut off my hair by my stylist at Colours. New Year, new me. I cant really describe what a big change this was, so I’ll leave you with the before and after photos instead.

The final change to bring into the New Year with me was to make my lifestyle healthier. I one to see a change in my body. People think that I exude confidence. But those of you who know me will know that I suffer with depression and self-confidence problems. At times in 2016, this depression crippled me and at one point I allowed it to takeover my life. It affected my confidence; it affected my ability to work; it affected my relationships. The talk therapy and the meds definitely help, but I felt I needed an overall lifestyle change.

So I have started a new health and fitness regime. I signed up for a year with Dan Sweeney Health and Fitness. As well as tailoring a workout plan to help me tone up, I have also gotten a lot of guidance around nutrition and my food choices. From what I’ve read from others who struggle with their mental health, diet can have an effect on recovery too. Just like it does with the physical health. So today is the day that I do my first big food shop for the new diet. I can’t wait to see the results – physical and mental.

*COMPETITION TIME ON BEYOND THE BLONDE*

Just click the link here to see the this weeks Facebook competition – valid until 13.1.2017

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An open letter on the Importance of Early Intervention, to Minister for Education and Skills, Richard Bruton TD

15 August 2016

Richard Bruton TD, Minister for Education snd Skills Dáil Éireann,
Kildare Street,
Dublin 2.

An open letter on the Importance of Early Intervention, to Minister for Education and Skills, Richard Bruton TD

Dear Minister Bruton,

I hope this letter finds you well. As I said in my previous letter to you on July 4th, it is my intention to write to you each month outlining some issues I have identified in the special education system in Ireland. A copy of this letter will also be sent to the NCSE. As you are the Minister for Education and Skills, I feel it is of the utmost importance that both you and the NCSE continue to receive these letters, as you have the power with a circular to effect a change in the system. Please allow me to take this opportunity to thank you for welcoming my first contribution so warmly in July.

It can sometimes be difficult to measure in quantifiable terms the importance of early intervention in a child’s education, but I can say from my personal viewpoint as a service user for over 20 years, it lays a foundation both educationally and socially for a child’s development and growth in society. Educational benefits aside for the moment, the early years of children’s school experience designs the slate they will base many of their social interactions on – a good social experience in school helps a child to develop their confidence in social situations.

As a child with a disability that was sometimes misunderstood, I wasn’t always afforded this positive growing experience. As I mentioned in my previous letter to you, my disability has resulted in severe sight loss, and some coordination issues. To put it to you quite simply Minister, I was a little girl in a big classroom who couldn’t read the blackboard or see clearly any demonstration by our teacher whenteachingushowtodrawlettersandnumbers. Thisoftenledtomeaskingquestionsofthe teacher that were already answered on the board or during her demonstration. As you can imagine, this would often lead to teasing by other kids about me not being as smart as them – but also to teachers forming the opinion that I wasn’t a good listener or that I was a child with a short attention span. Withbothofthoseopinionstocontendwith,Igrewintoayoungchildwithaverylow opinion of myself and my ability to learn.

While I still tried my best to learn at the same rate as my peers, I often missed out on parts of a lesson because I was afraid I may ask a question that was already answered on the board, but that I hadn’t seen because of my severely short sight. Although I sat at the very top of the classroom, I still could rarely read the board without the use of a small handheld scope. I also needed to use a handheldmagnifiertoreadmybooks. AndbecauseIwassuchanobviouslydifferentchildtomy

classmates, I ended up being treated differently by many of them and their parents; I was never picked for PE teams even when I was the only child left; I was unable to identify my friends at lunchtime break and often would play alone unless another child came to me; I was excluded from birthday parties of my fellow pupils.

In the early years of a child’s primary education, playtime and PE play a very big role in the school day,andsoagainit’swhereachildisexpectedtolearnandgrowtheirsocialskills. Manyofmy teachers tried their best to encourage the class to include me, but children will always follow the lead of their parents. And because their parents saw me as a child with special needs that they did not understand, they felt the best option was to exclude me. Not all children in my class did, but unfortunately the majority did, and so it coloured my social and emotional view of myself as I grew up. Our social experiences are just as important as our educational experiences in our early years, and as such, I feel there must come a change in Ireland’s approach to early intervention towards a more inclusive one.

Having dealt with the social aspects of early intervention, I would like to now focus briefly on the educational aspects of it – I say briefly here because I have seen during the research for my Masters thesis that there is already a wealth of information on the importance of early educational intervention for children with all manner of special educational needs. From personal experience, I know the value of early intervention in my own education – I know the value of it because I did not have it and because of this I struggled.

As I mentioned above, I could not always follow the blackboard demonstrations of my teachers, and although they did their best to assist me, they also had twenty-eight plus other children to teach. Due to the lack of a special needs assistant to help me with understanding what I was unable to see, I could not follow many of my earliest lessons on reading and writing, and I fell behind significantly. For many years I could not read as well as my classmates because I had failed to learn the spelling of many every-day words. I did notice an improvement when my school was eventually allocated resource hours which allowed me to have one-on-one tuition – but in reality my resource teacher and I were only ever playing catchup to everything I had already missed.

To this day, my mathematics ability is limited at best, and I attribute this deficiency to my failure to learn basic maths skills as a child, which in itself was a failure of the educational system to support me. I also have limited writing abilities – I consciously avoid many situations that require me to writeorfilloutformsasmyconfidencewasconsistentlyshatteredasachildlearningtowrite. I generally write lists in block capitals as my fine-motor skills and co-ordination is restricted by my sight. Again, this was another issue I faced in school while learning to write which was often misunderstood by teachers as laziness, and misunderstood by classmates as stupidity.

Having considered the differences I have seen between my own situation as a child in the nineties, and the supports offered to children now, I am heartened to see there has been such a vast and consistent improvement to the supports offered to children, and also to the training given to teachers in terms of understanding the special needs of children with education needs. I would like to

applaud you Minister for continuing to reinforce the provision of these services. Having completed my Masters thesis in special education service provision, I am fully aware that money as a resource itself is always in demand across the education sector as a whole.

However, I would like to take this second letter in my series to you to note some of the suggestions I feel could make improvements in the education sector from the point of view of a service user. As I detailed above, social interactions form a very big part of the early years of any child’s education, and I feel that by using more inclusive teaching methods, teachers and schools can often avoid many of the rather harsh situations I found myself in as a child. These methods might include giving oral instructions to a child with a reading or vision impairment, so that the child won’t end up in the situation of missing out on a direction or demonstration they are unable to read from a blackboard. Other examples of successful teaching methods in other European countries have included concept based teaching for children on the Autism spectrum; demonstrations with oral descriptions for children with vision or reading impairments; team-teaching strategies for children with learning disabilities etc.

Simple differences here can be identified by a teacher or special needs assistant, but often need the approval or support of department officials or visiting teachers which in itself would require more flexibility from the education system. There is also a cultural change which will need to happen in conjunction with this – a change in the way children with disabilities are viewed not only by their teachers but also by parents and other children. During my time in school, the needs of a child like me were often misunderstood and left me in situation where I was ostracised by others which has had a long-lasting effect on my self-esteem and confidence to this day. I would very much welcome an age-appropriate lesson-time for children to help them understand that those with disabilities aren’t to be feared, or “broken’’ – they are children who are the same as them, but may need extra help in some situations. This can assist us in developing a more inclusive and accepting society, but it can also prevent later issues surrounding a fear of school, low self-esteem, and the development of social anxiety and related mental health disorders in Ireland’s children and young teens.

Again, I appreciate you taking the time to read this correspondence Minister. I feel Ireland is working well in terms of its objectives with early intervention in schools, but that there must be a social-focus to this as well as the educationally-based approach, as both can have far-reaching and long-lasting effects on Ireland’s next generation of school-goers with special education needs.

I look forward to hearing from you, Is mise le meas,
Jessica Ní Mhaoláin, BSc., MBS.

An open letter to Minister for Education and Skills, Richard Bruton TD

4 July 2016

Richard Bruton TD, Minister for Education snd Skills

Dáil Éireann,

Kildare Street,

Dublin 2.

An open letter to Minister for Education and Skills, Richard Bruton TD

Dear Minister Bruton,

My name is Jessica Ní Mhaoláin, I’m a 24 year-old student from Cork City. I’m writing to you to give you an insight into my world as a student with a severe vision impairment, and I would also like to offer some recommendations to you as a service user of special education services for more than 20 years. I completed primary and secondary school, and am currently applying for a PhD in UCC, where I have already completed a BSc in Health Promotion and a Masters in Government. My masters research was around the area of special education, and my PhD topic (if approved) will follow on from it. I’m hoping that by reading this letter, you will take some time to think about the plight of many other children, teens, and adults like me who are currently working their way through the education system – some with more success than others, as is the case in my situation. Hopefully, an insight like the one I will write you can assist you in deciding how best to apply funding in sections of your department ahead of the next Budget, and may also open a dialogue between a service user, like me, and you as Minister.

Firstly, I would like to give you an overview of my disability. From birth, I have suffered from a condition known as oculocutaneous albinism accompanied by nystagmus. Oculocutaneous albinism is a rare disorder due to a genetic abnormality that effects the skin, hair and eyes; my body cannot produce melanin because of it, and therefore my optic nerves failed to develop properly. Because of this malformation, I can see about 3-4 feet in front of my face, and after that my world starts to blur. I also suffer from an involuntary movement of the eyes, known as nystagmus; my eyes ‘shiver’ (for want of a better word) and this prevents me from focusing my eyes on anything, including when I’m reading or writing. As you can probably imagine Minister, this disorder has a considerable effect on my day-to-day life; I use a cane to navigate my way around, I cannot drive, I cannot read menu boards or small print in newspapers, and it also effects my fine motor skills which restricts my ability to write neatly or draw diagrams.

My journey in the Education system began in the mid-nineties when I started at my local Montessori in Ballyphehane, Cork. At first, the differences between other children and I went largely unnoticed – we were all learning skills at the same rate as 3 and 4 year-olds do. It was when I started primary school that my disability really began to hinder my ability to learn at the rate my schoolmates were. We learned, as every child does, to read and write through exercises on a blackboard demonstrated by our teacher. Similarly, we learned about history, geography and maths the same way. But I couldn’t see the blackboard from my seat at the front of the class, and there were no vision aids available to me at the time. I didn’t fail to learn, however I learned far slower than my friends and fell behind quite early in my schooling – despite the help I did receive from my school who, at the time, had no legislative requirement to assist a child like me but did so because it was what I needed. Being honest and very candid about it all, I was almost nine years-old before I really grasped how to read and write properly, and this only occurred because services began to step in and help me – the Education Act of 1998 came into force but did not really ‘filter down’ until around 2001 for me – I was almost 10.

Services I availed of in school were largely in the area of teaching support and resourced learning hours. These were put in place to help me catch up to where my class was – I missed the basics of reading, writing and maths, and unfortunately I still feel I never regained what I have missed in those starting years. The help came a little too late for me, because of many reasons; financial decisions within the Dept; lack of understanding of my disorder; lack of training for teachers in different learning modes; and lack of classroom assistance like an Special Needs Assistant.

Luckily, the availability of these services improved within the Primary teaching setting after I moved onto secondary school, something I was so happy about. Until I heard they have begun to disappear again. Before the last election in February I spoke out about my worry at the effect recent special education cuts in Cork would have on the future of the children at the centre of these cuts. I know better than most, Minister, that a child with any kind of disability is at risk of failing to learn the basics if the help of a scribe or SNA isn’t in place for them – my case isn’t just a once off. My heart broke for the families of these children when I learned that their SNA’s had been cut – for me, that would mean a ‘working pair of eyes’ were taken from my classroom experience. An SNA is more than a classroom assistant to children with a disability – for some of us they can replace a sense we have lost such as sight or hearing, for others they are a physical support if their impairment has left them unable to write. And especially for children on the Autism Spectrum, these assistants are a major support for them as they integrate into mainstream aspects of school life. I sometimes wonder if the role of an SNA is underestimated or misunderstood by some in the education sector, and perhaps this is why their position is sometimes treated as a luxury by Department officials. Of course, I’m fully aware that financial resources are an issue in every government department and also the idea of special education is to hopefully allow the child independence from the assistant at some point – but depending on the disability the child is dealing with, it isn’t always practical to have the aim of eventually removing such an important support.

Although I have been lucky in how I got through my school years and made it to a fantastic university which has been constantly supportive of my needs, it is just that – luck. I have been lucky with the teachers and SNA’s I have met along the way. And I’m sure you would agree with me when I say that no child’s education should be left to chance with only luck on their side. Education is a basic human right for us all, education the tool that helps people escape from the poverty trap, education is our way to integrate into different aspects of society and enhance our lives with both knowledge and the enjoyment of reading our favourite book, or discussing a recent play – or just being able to balance a chequebook.

Minister, I intend to write to you monthly with these education updates and with ideas I have researched into improvements that can be found in the Special Education sector. There are so many things that can be done – big and small changes – that they are too numerous to detail in one letter alone. I don’t believe that your government, or any other government before you, has ever intended to wilfully neglect the Special Education sector. However, I do believe you and your officials can benefit from the input of a service user like me to assist in targeting areas which need improvement. As I have said above, I have been lucky to find my way successfully, but many coming through the system before and after me have not been as lucky. My hope is that you or your staff would be open to establishing a rapport with me. Although I have the research experience having completed a Masters Thesis in the area (which I will happily forward to your office should you wish to read it), I also have the practical experience of dealing with the Dept of Education as a service user for more than 20 years.

I believe you and I both want the same thing for children with special educational needs – we both want them to have an equal playing field when it comes to learning and reaching their full potential.

Is mise le meas,

Jessica Ní Mhaoláin, BSc., MBS.

Summer Sun

As some of you know, I was on a long overdue sun holiday last week – rakes of emails, tweets and Instagram posts have been totally ignored. While I was posting pictures here and there, I did my best to just sit back, relax, and enjoy a little disconnection from the madness for a week.

Chilling by the pool while on holidays in Puerto Del Carmen, Lanzarote

Right away, I know a lot of you are probably thinking “sun holiday, wouldn’t that be a nightmare for someone with albinism?”. And in the past I would definitely have agreed. If you ask my parents, there wasn’t one family holiday I went on in the past where I didn’t get some form of sunburn. It always seemed that no matter how many times I got into the pool with a t-shirt on or lathered myself in Factor 50 suncream I would always end up roasted and as red as a lobster! Nearly every holiday – even the Staycations we had here in Ireland – I always got a burn, and bad one at that.

Obviously, I had learned how sore the burns could be and as a (somewhat) mature 24 year-old, I decided I would do everything in my power not to get roasted this time – but I was determined to do it in style. From my experience, people can often overlook the psychological effect something like this can have. For me, anytime I’m out in the sun and there are all these tanned people soaking up the sun, it just serves as a reminder that “I’m different – I can’t do this”. And so, being careful in the sun in style is a diversion tactic of mine.

Myself, my dad Sean, and my brother Evan on the beach on one of the cloudier days

First things first – a spray tan was my first port of call before heading off. The thinking behind this was twofold; I’ll look tanned when I get there so I’ll fit in, and also there is an SPF in the spray tan my local salon uses so it’ll protect my skin too. Of course, I’m not silly enough to think that this SPF will keep me completely protected…. And so I bought a bottle of Sally Hansen fake tan and a brand new tanning mitt to pack into my suitcase. After a little research, I figured that because I would be applying ‘Sally’ a few times a day, the SPF 20 in it would act in a similar way suncream does when you reapply it. So there, I was sorted – I could wear my bikinis, sun hat and sun dresses without looking pasty and – lets face it – standing out.

I forgot to pack the tan and mitt!!!!!

So I’m sitting by the pool wearing a dressing gown on the first day because my plan fell apart – and I had refused to pack any ‘just in case’ sunscreen so I was in double trouble!! Luckily, I kept entirely covered by either shade or light clothes while at the pool that day, and also had the wherewithal to take a few (completely staged!!) bikini photos. Later that night, I was on the search for fake tan – which is hilarious considering I was on holidays in Lanzarote. It even got to the stage where I was Googling ‘where can I buy Sally Hansen in Puerto Del Carmen?’.

As it was getting to the stage where I was resigning myself to having to lather pasty white sunscreen on myself I found what is probably the best sunscreen I’ve used. AND it has fake tan in it!! I HIT THE JACKPOT!!

This is the sunscreen I found - a good SPF and a bronzer! — This is the sunscreen I found – a good SPF and a bronzer!

The sunscreen I bought and used for the rest of the holiday is the Australian Gold sunscreen with a built in bronzer. Happy days – I was protected from the sun AND i was a little tanned looking too. I used this religiously for the rest of my holiday, and I didn’t have one burn. Not one – which is a first for me! As soon as I got home – sun burn free – I knew I had to let everyone else know about this little discovery I made. For me, its about convenience and ease of use – this sunscreen helped me to ‘fit in’ with a little bronzing and it wasn’t sticky or pasty on my skin. Everyone was a winner!

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Close To Me

This post is about as real as blog posts come, so look away now if you don’t want to be set on a bit of a downer today…

Have you ever sat quietly, almost frozen in a moment, maybe on the side of your bed, or during a trip to a park, and realized you lost something important? Something important enough that you definitely need it, but subtle enough that you didn’t realise it was missing until you got some time to yourself to look for it? I lost something like that. It was me. I lost me. Somewhere along the journey of life that I’m traveling through, I put myself to the side – just for a minute I swear – but I left me behind. I forgot myself somewhere along the way.
I didn’t notice it at first, or maybe I did but I just told myself otherwise. But I’ve now come to realise I lost me a long time ago, and if I want to keep moving forward I need to find myself and my contented mindset again. But what was I like before I lost ‘me’?

How do I know when I’ve found me if I can’t remember what it was like to be me in the first place?

It’s probably a bit like driving to a place you think you’ve been before – but in reality you’ve never been there, and now you’re driving aimlessly wondering where this destination is.
People call this feeling a lot of things: loss, mourning, depression, numbness etc. But does the label really influence what the feeling is? Yes, and no. As my good friend Rob says, “better the devil you know than the devil you don’t”. So in that regard, a label is great. You know what you’re up against and that can help you come up with a game plan. But the label can be a hindrance too. It might make you judge a situation differently and excuse other people’s actions because of their labels, ultimately doing yourself a disservice.

How do you find yourself? Now isn’t that the million dollar question! If anyone had a true and worthwhile answer to this, we probably wouldn’t have a whole market based completely on self-help books and gurus like Dr Phil and Oprah. Don’t I wish I had the answer! I don’t, but I know what can help me at times – taking some time out to reassess. I’m a very social creature and I would spend all my time around other people if I could, but when I start to feel lost I like to take some time out to deal with the feeling. If I don’t do that, anxiety will always get the better of me. And anxiety will always make a situation like this feel 100 times worse.

I’m trying to find me, but I honestly feel like I’m failing miserably at this. For a while, things pick up and I’m busy with some project or other and I honestly feel like I’m getting somewhere; I’m driving the car in the right direction and I’m finding me. But then something in my environment will change and it’ll have an almost crushing affect – the car stops and I’ll fall apart. I’ve lost my way again. It’s tiring and it tries my patience to the very end.
I wanted to write this to let others out there know that you are not alone in this journey. There are a lot of people feeling this lost. It can also make it hard to connect with others, and it sometimes tricks me into being paranoid of what others think of me. So if you’re going through this feeling, watch out for that – you can very easily end up isolating yourself. I’m doing my best to move forward with this journey, and I’ll happily let you guys know how it goes but I know it’s gonna take a lot of time… The plan is to stay busy, I hope that works out for me, and for you too.
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THAT Blog Post….

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Peace and pout on graduation day - I graduated with an MBS in Government — Peace and pout on graduation day – I graduated with an MBS in Government

So last week was an absolute world-wind for me for two reasons; I went viral and I graduated – in that order. The whole story has two starting points really, one is in my childhood, and the other is in a news story that broke early last week about some SNA’s (special needs assistants) being cut from a school on the northside of Cork.

As a child, growing up in 90’s Ireland, special education supports weren’t as well developed as they are now – any supports available to children and teenagers were provided on an ad-hoc basis by schools, so these supports varied greatly between every school. It was sheer luck and nothing else that the primary school I went to provided a limited support to kids like me, and provided me with learning supports around english and maths mostly. Classroom supports like SNA’s came into force after the 1998 Education Act was introduced because the Act gave a legislative right to all children to have their special educational needs met in schools. But it wasn’t until I was in Fourth Class – I was about 10 years old – before I actually had the help of a needs assistant to do the things that I couldn’t: take notes, describe any demonstrations in class, and generally make sure I’m keeping up visually with what is going on in the classroom.

Speaking to The Opinion Line on 96fm shortly before my conferring ceremony

Up until then, I relied purely on sound because of my vision impairment. I relied on sound to learn how to spell, form words, write and do maths. I relied on short, inadvertent, descriptions of diagrams or photos from teachers to understand a flow chart or table. Until I got an SNA, I spent a lot of my time in classrooms hoping a teacher would just happen to describe what was happening on the blackboard so that I might have some hope of learning at the same speed as other kids in my class. All I ever wanted to do was learn at the same speed as my friends, but I didn’t have that chance and ultimately ended up falling behind educationally at times.

I was nearly eight years old before I really started to grasp how to write sentences properly and spell words with silent letters in them. My handwriting structure never improved beyond that of a 10 year-olds because of my finer motor skills not being developed at the same rate as others. To this day, I still struggle massively with basic maths and arithmetic – and I put that down to the fact that I never learned the basics of dividing and multiplying until I was much older than my friends because someone wasn’t there to help me take notes and learn from the blackboard like other the kids. There’s a reason we teach children these tools from a very young age – because it’s far easier to pick these tools up as a young child than an older child who learned how to do things ‘the wrong way’ first. Having said that, I definitely do think that having the support of an SNA to help me ‘keep up’ with my peers did improve my educational situation. It helped me to learn at the same pace as others, and I needed less and less learning support because I was finally getting the chance to learn at the same pace as everyone else. It stopped the slippery slope I was heading on – up until the point that I got this support, the frustration of not being able to keep up started to negatively affect my self-confidence and made me almost fearful of going to school.

My masters thesis was based on research into the allocation of Special Education resources in Ireland - please contact me for a copy if you would like one — My masters thesis was based on research into the allocation of Special Education resources in Ireland – please contact me for a copy if you would like one

I hadn’t thought about this much since I had left primary school and completed my second and third level education – I suppose I just ‘got on with it’. It became second nature for me to have an SNA by my side during my second level education – with the exception of my final year when my SNA hours were dramatically cut. But on the eve of my graduation last week, I heard a news story about how 3 SNA’s had been cut from a school in Cork. At a very minimum, three children were on the cusp of losing this invaluable resource that I had. I say ‘at the very minimum’ because in Ireland, it is a rarity for one SNA to be assigned to one child – often times these assistants are split between at least two children, if not more.

It made me sit back and think for a minute – where would I be now without my SNA? What would have happened to my education had I missed out on the chance to have a level playing field to others when it came to learning? I can tell you exactly where I would be without that:

I would not have finished my primary school education
I would still struggle to read and write
I would have been unable to take part in mainstream education in second level
I definitely would not have made it to college
I most certainly would not have graduated with my masters last week

The piece from The Irish Sun about my Facebook post

All these feelings are ultimately what lead me to writing the Facebook post below – which subsequently went viral. I wrote the post because I wanted to stand up for the kids and parents who were in a situation where my parents and I once were. I wrote the post because I wanted someone with some power over the situation – a legislator, a Dept of Education official, etc. – to think about this huge difference that having an SNA made to my life. It completely changed my life course and direction. Unless you have first hand experience of this, it can be terribly hard to grasp just what a difference a resource like this can make to a child. These department officials, ministers and legislators are literally holding a childs’ education in their hands – I want to make sure that they realise this.

Tomorrow morning at 10am I will be conferred with a Masters in Government in UCC. This is my second conferring in two…

Posted by Jessica Ní Mhaoláin on Tuesday, February 23, 2016

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Tomorrow morning at 10am I will be conferred with a Masters in Government in UCC. This is my second conferring in two…

Posted by Jessica Ní Mhaoláin on Tuesday, February 23, 2016

Instead of rabbiting on any more than I already have, I’ll leave you with the links below to a few different interviews I did on the back of the viral post – just click on them to open.

The Opinion Line

Lunchtime on Newstalk

Irish Examiner font page

Nuacht TG4

The Irish Sun

If I can be of any help to anyone on this topic, please get in touch through Facebook or Twitter – I’m more than happy to help!

And yes, I did really enjoy my graduation!

Imagine making the front of the Irish Examiner on your graduation!!

How To Ball In Style This Spring

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verso pic — My favourite buy from Verso – photo courtesy of Emmet Curtin Photography

So it’s that time of year again in college – ball season! When you buy your ticket, you’ll swear your outfit will be on point and your assignments will be done, but in reality it’ll be a last-minute buy or rent for the ball in question. To help out with this search for an outfit worthy of an Instagram post, here are some ideas we’ve put together on how to look good, and to be unique while doing so! All pieces below are available from Verso, located in Douglas Court SC. The award-winning store is a fusion of a local boutique offering clothes from the casual to dressy, and a gown rental service.

Remember that a dress code is what you make of it – it’s your style and no one else’s. Don’t be afraid to stand out from the crowd and express yourself with an outfit a little different than the rest.There are some great ideas for setting you own style for the next college or society ball. And that assignment you have to finish? … Well, I’ll just leave that to you!

Let’s start with this beautiful rental from Verso, which would be perfect for the more verso4formal balls such as Strauss or a black-tie ball. The best feature about this particular gúna is the lack of jewellery which would be needed with it too – all that beading in the top is more than enough! Also a very flattering fit on you taller ladies who don’t want to wear a dress with one design flowing throughout

The ‘Lily Black’ is a perfect piece for the less formal events, or the afters of a Ball. While the dress itself is a simple LBD, it’s jazzed-up studded arms give it that added WOW! While it is a body con style dress, the detail on the upper part of the dress can be very forgiving. Well worth a look!

Another LBD here a beautiful sequin and bead effect – again, perfect for the less-formal Balls or the afters. For those of you with a keen eye, you’ll spot straight off the mark that this is a trademark Virgos Lounge piece – known as the Veronika. Minimal accessories with this would be best, and its a great fit for those of us who are conscious of our shape in certain dress styles.

Yes – you can wear a jumpsuit to a ball! After all, its YOUR style! The Darcy has a cullote finish to the pants, and is a great alternative to a ballgown. It’s an amazingly comfortable piece to wear all night long, and is perfect for all types of college balls, including the more formal ones. Best paired with some statement jewellery and stilettos that’ll give you a bit of toe cleavage.

*Please note, this is an edited repost of a piece I wrote for the UCC Express as Fashion Editor in December 2015 – see the original here.

The Rest Is Still Unwritten…

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Yes, I realise I have probably titled this piece with the most over-used song lyric at this time of year, but it’s the lesson I’ll be taking into 2016 with me so it seems apt! It has been such a long long time since my last blog post – because life can really get in the way sometimes. And it really got in the way for me recently.

The thesis. Those dreaded words that every postgrad treats as a bittersweet symphony of work and research. As some of you may know, my research was focused on special education legislation in Ireland. And from May until November I spent each and every day pouring over books, interviews and fact sheets on my thesis subject.

Unfortunately for me, my health got in the way of the writing too – namely a broken wrist bone in July, followed by a complex appendectomy just a short few weeks ago. Yikes!

The view from my hospital bed during recovery - the chocolate had to wait until I was allowed return home — The view from my hospital bed during recovery – the chocolate had to wait until I was allowed return home

I will detail just exactly how tough 2015 was in another blog post… But this one is just to let people know I’m back on the up. And also, a chance to remind myself that 2016 is a new year. With 365 new pages for me to decorate with stories, photos, smilies, quotes… There are going to be times when the pages will be blotted with ink, and other times when these pages will be tear-soaked. The most important thing I learned in 2015 is that you can only ever live in the here and now; the past is behind you, the future in front.

You are the author, you are the story teller. Your story must continue, so use a semicolon if you have to.