Pack a bag

04/10/20

The last time I had to have a bag packed and prepared in case of a hospital stay was when I was pregnant with Elijah. After Miss Meg being in such a hurry to appear we wanted to be prepared in case the same happened again.

This Pack a bag doesn’t feel quite the same, theres no hope or excitement to accompany the fear. Instead of a bag that might have come with me to meet my new baby 10 years ago is a bag that might be the only item I see again from home.

This season is scary for us all. Every one of us are walking a whole new journey. We’re all trying to navigate this new normal. So many folks are facing risking their lives every single day, and we can say NHS staff signed up for this job but they didn’t, they signed up to care for people, no one ever imagined they’d have to risk their lives on the scale they’re having to and they certainly shouldn’t be facing added risk that could be avoided if the right PPE was supplied.

This is a season where we feel so grateful to those who are keyworkers and essential workers. To those who risk their lives, who save ours and who keep the world ticking over. We are all playing a part and those working from home although they don’t play a keyworker role now, they’re keeping our economy ticking over which is going to be key when we come out the other side of this. Those furloughed or simply staying home are playing a huge role in saving lives, so we truly are all in this together, all important and all valued.

My experience is of one of the ‘shielding’ group. I suspected I would be in this group with being immunosuppressed and having lung disease. When the letter arrived this week I had actually ended up in such a state of not really knowing where I fitted in this whole scenario that my first reaction was relief. Prior to my letter I had a brief conversation with rheumatology in which they told me that my infusions would be stopped indefinitely. There where some notes on my file that said ‘due to risk’. That was all I was told and understandably so as everyone is under so much pressure in the hospital. I then proceeded to watch some rheumatology Q&A’s and was getting conflicting information. Everywhere I looked the information was to not stop your medication. I wondered had it been an error, how would I cope indefinitely, was I staying completely house bound when I didn’t need to? So when the letter came at least I had some amount of clarity.

You see it seems like a really easy option to be the people who have to shield. All you have to do is stay home. Let other people get your shopping and medicine, sure you need to keep a distance from your own family and you cant leave your house. When everything is closed and there aren’t any trips apart from essential ones permitted then thats not really a big ask, is it? and its not in many ways.

I will have been shielding for 4 weeks this weekend, I am very willing to do my bit and protect myself, the NHS and others. However in 4 weeks I have a lot of time to wonder what next. This past three years has been terrible for waiting lists and accessing services. Lists for orthopaedic surgery where already exceeding 3 and 4 years. These where the surgery’s that where first to be cancelled, and no doubt will be the last to be reinstated. How many doctors and nurses from specialist teams will be completely burned out after this pandemic, how many will need and deserve substantial time off. I cant imagine that there will simply be an off switch for all of this and that normal will be something we will easily find our way back to. Where does that leave treatment for those with ongoing conditions? This is in no way our wonderful Doctors and nurses fault but if our NHS hadn’t been all but destroyed before this would I and others like me have been forced to take this trade off?

In the early days of the Pandemic, when coronavirus was a distant problem that surely wouldn’t come close to home. There was a lot of talk of how it would only affect the old and vulnerable. For a while the focus was firmly on the old, but we the vulnerable and the elderly where instantly and ‘only’. To be honest people seemed to begin to get on board with social distancing once ‘healthy’ people started to become ill. Although thats a natural reaction for society, these things very rapidly begin to deplete our value as human beings. To be feeling significantly like you don’t matter and then be asked, in Boris’ words to ‘remove ourselves from society for 12 weeks’, psychologically thats a really hard place to be in.

One of the last things I did just before all of this started was fill in my form to prove that I am disabled enough to receive money to live on. The government sent me this form as they need me to prove myself. Nothing makes me feel more worthless than those forms, like I’m begging for the government to support me when I don’t contribute to society. I have to prove that my life limiting incurable illness hasn’t gone away, and yet within 4 weeks they can send me a letter because they know I am so vulnerable that I need to not leave my house. How many of us will make our first trip out of our homes to a routine face to face meeting to prove we are suitably disabled and how many will still be refused?

I don’t want this to feel like a rant about ‘poor me’ because thats not how I feel at all. what I do feel is side lined by society. I feel and I felt before this that disabilities are very misunderstood. There are very few people with whom I can ever truly reveal how I feel day to day. I regularly feel ashamed of how little I contribute to society and my family. Even though my husband has a good job and pays his taxes and we have a small growing business which also pays tax, I still feel that ultimately I am a drain on this world. This current situation has only emphases that.

Ive seen a lot of people say recently that now the general public know how it feels to be restricted to your own home, to be afraid of getting seriously ill that they will now begin to look at disabled people differently. I am not so hopeful. I live in fear of the after this. I am worried about an NHS that is once again discarded when those in power no longer need it. I wonder will the people classed as ‘unskilled’ just a few months ago will get the recognition for keeping the country afloat or will they be taxed so hard they cant survive? What will be the cost of the after? This all feels very negative and its not my intention however I feel its relevant to keep our eyes to the future. When we are all so able to push so hard as a society for what we feel is needed now, can we keep that up for our marginalised after this is over? Can we refuse to let the most vulnerable be left sitting with their bags packed and nowhere left to go.

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It is fear that cannot be trusted.

02/01/20

Anyone who knows me, knows I am Disney obsessed. Its no real surprise that as soon as I saw Frozen 2 I became a bit obsessed. The idea of stepping out of your comfort zone into the unknown with the potential of an adventure or maybe simply finding yourself, was one that really caught me. There is one line in the film that has been spinning in my mind since I heard it. ‘It is fear that can not be trusted’.

We all know what fear is, we’ve all experienced it in different ways. It can stop us from taking big leaps and from finding our full potential. What I hadn’t considered was how much it effects our every day life. In a world were we as society are choosing to pull away from one another, how much of that is down to hidden fears? How often are we just afraid of the unknown or differences but we’re not realising its our own fears and insecurities creating an impact?

I started 2020 gripped by fear. The second day in I had an appointment for my infusion which couldn’t go ahead as my blood count was too low. This really isn’t a big deal it does happen with the medication I am on and especially at this time of year when there are a lot of bugs and infections around. Instantly my mind spiralled. My bloods hadn’t dropped since I was very ill almost 4 years ago. Straight away I panicked that this was the direction I was headed and I wouldn’t be able to fight it off. Its easy to forget the reality of living with an aggressive autoimmune disease when things are controlled. Moments like this however remind me that I am living on a knife edge. Immediately the fear I felt created a spiralling effect. I cut myself off, I put up defences and I pushed people I loved back. This was resolved within a week, so the consequences where not long lasting. My family and close friends understood and I was able to move forward.

This opened my eyes a little. It made me consider how often fear has stolen from me. How often have I just closed off before I have given anyone a chance to understand. How often have I blamed a difference of opinion, different beliefs or lifestyle to rob a friendship or experience when it has been my own fear? Fear telling me that people, experiences, choices, cant be trusted? When the thing that can not be trusted, is fear.

How often have I not taken the time to understand when people pull away from me, that it might be their fear motivating that? When someone cancels plans, is it fear thats controlling that rather than something personal? By taking offence we allow fear to win. Should we take time to look deeper, to understand what others are going through? To learn and grow with them rather than allowing the fear to break things down?

When I am parenting my kids, I watch them navigate fear on so many levels. We always teach our kids to push through so that they don’t miss out on life. When do we stop doing that for ourselves? Sometimes I think becoming a parent is when fear grips us the most. There is nothing more scary than being a parent. Being responsible for the safety and wellbeing of a whole little person. Sometimes that fear does take hold and needs some help to overcome. But being a parent is one of the most wonderful experiences there ever could be, and if we let that fear control us we would miss out on so many more wonderful experiences and this is why we push through. I need to transfer this to other areas of my life.

My marriage for the past three years has been plagued with fear. My husband has a very real battle with mental health. I live in the fear that he wont be able to keep up that battle. My fear of that can then leads to tension and pressure. The need to try and make it better belittles the journey he has to navigate. The fear of the worst case scenario can steel the reality of the situation and can even steal the joy of the good times.

In a society where we are facing a world of change, we must not let fear divide us. Fear of the unknown, in a season broken unions and change we must not forget that the things that make us different are often things that make us stronger together. Some are afraid for their businesses and changes in life style. Those who want change are not against those who don’t, its simply a different set of fears and priorities that are equally as valid. We all need to remember that often people are afraid and instead of pulling one another down, we need to look at each others fear with compassion and understanding

My life isn’t the same as yours, but our lives aren’t in competition. There are things people will do better than me, that doesn’t mean that I am less valuable in this world. I need to learn that a fear of being left behind. Of being different or feeling less can not be the thing that motivates me. I need to celebrate being myself, exactly as I am. I need to look for the fear in others rather the hurt in myself. I need to overcome the need to be in control and understand that sometimes I will be afraid but that fear does not control me.

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I choose love

09/08/19

Its been a while since I’ve blogged. Ive felt my voice as been a bit lost recently. However sometimes things need to be said.

To be clear, before we begin, this blog post is not addressing the issue of abortion laws changing in northern Ireland. It is a massively controversial topic. One that my own opinions on have changed massively over the years and one that is highly personal to each individual based on personal circumstance.

What I want to address is a topic that I feel is being over looked in the midst of campaigning for or against law changes.

The topic I want to write about, is loving the living.

A few years ago there was a highly published case of the death of a baby boy. This baby had been abused and then killed in a horrific way by those who where supposed to be protecting him. Understandably there was public outcry. Demands for the death penalty to be brought back for those who could commit such horrific crimes.

This child was not the first and is far from the last to go through such circumstances. There is always an outcry and blame assigned to parents, family, social works, schools, police etc every time these cases come to our attention. However there are thousands of children who face this treatment every day, but they don’t die, they live with it, day in, day out, unnoticed.

These children have public sympathy and support when they hit our news papers but often in society they are the kids not invited to parties. They might be the kid thats always late for school. The kid whose hygiene isn’t quite up to scratch. The kid whose homework isn’t in on time or the kid who is messing in class, (because they’ve missed so much they cant keep up and want to distract from not understanding). How often do we criticize that child? That family? Do we call by and ask if they can cope? Or do we exclude those kids from parties, activities and ask for them to be moved away from our kids?

This child thats been forced to live on the outskirts of society already within primary school life, will then look to places they fit in or feel safe. Its been proven that children as young as 6 become involved in gangs, passing drugs from one person to another, initially unaware of their involvement. They then begin to feel part of something. Unfortunately people involved in dealing drugs then often become users. Now if you where going home every day to abuse and neglect, possibly always going hungry and someone offered you a substance that made that all easier to deal with, its going to be very hard to say no.

Addiction takes hold very quickly in these situations and with addiction brings crime. To afford these drugs, or this lifestyle this kid (probably now mid teens) is forced to steal. After a while this kid gets caught, goes to youth offenders, gets a bit of support but when they are released they are straight back into the same cycle. As with all issues in society today there is not enough funding or support to meet the real needs. It is worth noting that with good rehabilitation programmes, appropriate housing and job opportunities reoffending drops dramatically.

At this point the public who would cry out for the child as a baby, begin to write this child off. We hear the words how can someone so young be so ‘bad’.

When we are so quick to call for tougher prison sentences, to push kids out of our schools and judge parents who are struggling and doing the best they can. Remember this is who you marched to support not just the cute cuddly upper class children who are seen and not heard and when you argue that life beings at conception remember that a baby grows into an adult and your support needs to last to adulthood!

Of course this isn’t the same path for everyone and I am not defending committing crime in any way. I believe in the justice system and even more the rehabilitation. I am also not saying that these are the children who are aborted or ever should be. This is simply an example of what so many turn a blind eye to and society’s hypocrisy. The point I’m coming to is that this is a path very easily avoided.

You see I feel, and its only my opinion. That if we stopped spending our energy walking the streets with banners stating our opinions, (any opinion)and we went into our communities and found the families with no choice and what sometimes, in the pressure and struggle can feel like no life and we helped tackle their real issues we would have a far greater impact.

How can we honestly stand in SILENCE demanding children be born in any circumstance when we should be screaming from the top of government buildings that thousands of children on our doorsteps are starving, struggling, abused and neglected.

How can we force a woman to give birth knowing that her abusive partner will beat her and her child to death within a year? Is that life? would you judge her or would you help her?

We need to be less concerned with what is right or wrong in such small circumstances and we need to look at the bigger picture. We need to tackle poverty, abuse, rape, homelessness, mental heath, prison rates, rehabilitation. If we worked together to tackle these issues then we might see less women forced to make the most difficult decisions and we might also be more compassionate in the circumstances when they do.

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Move Mountains

07/23/19

Age 4, entering a strange new world of education I didn’t know what life would bring my way. The smallest in the class I realised quickly that I preferred to talk to the teachers rather than the pupils. In later life I found out that the teachers had realised quite quickly that academically I wasn’t the strongest. What stood out from day one was that I was slower at completing my work than the other kids my age. I went through my school days with varying degrees of support from different teachers. Some teachers simply believed I was lazy, some thought there might be a need but in a class of 30 kids there simply wasn’t the time to address an extra level of teaching. I was finally diagnosed as dyslexic when I was 9 in primary 5. I cant say I noticed a lot of difference in my teaching from that point but I did get understanding of the need to work harder in order to achieve what the other kids where achieving. In primary 6 I had one really horrible experience with a teacher screaming at me to hurry up and give the answer in front of the whole class. This caused me to have a continual fear of getting something wrong.

However everything changed when in Primary 7 I met a teacher who quite simply believed in me, she knew I had potential and that everything I needed was within myself. She could guide and encourage me but ultimately where I would go from this point was purely down to me and how much I wanted to achieve. I ultimately surprised everyone by getting a place in Grammar school.

Grammar school and a kid with dyslexia, 20 years ago probably wasn’t the greatest decision. I repeatedly found myself at the bottom of the class which doesn’t do much for your self esteem. Eventually you stop believing you are capable of achieving anything. Again what changed everything was a teacher who believed in me. My English teacher took me under her wing. Took time out of her own lunch breaks and gave me extra lessons helped me grasp the basics and then helped me fall in love with English literature. Thanks to that teacher I achieved two B’s in English at GCSE and a B at A level, when others said I wouldn’t even be able to manage a C at GCSE, she taught me to believe I could achieve anything through the love of learning.

Fast forward and dreams of becoming a teacher faded for ideas of romance and having some money from working full time and I decided that university wasn’t for me. I got married, had two children and got diagnosed with Rheumatoid arthritis all by the time I was 23. Hopes of achieving anything beyond that had faded. But when Megan went to nursery I decided I needed to find something that was just for me. Something that made me more than a mum or a wife. Something to remind me of who I am. I started out on a social sciences course and loved it, I moved this to Psychology degree and then as I started volunteering with Prison fellowship I moved to Psychology and criminology. The path was not smooth. Ive gone through 6 different forms of autoimmune treatment in that time. I developed pneumonia which I had for a full year and which turned into sepsis and a hospital stay and ultimately a diagnosis of lung disease. Elijah went through 5 rounds of surgery and Meg, Eli and Ben where all diagnosed with ASD which comes with its own round of courses and education to get my head around. We suffered grief and redundancy all within the past 8 years while trying to juggle regular parenting SEN parenting, long term illness and just every day life.

Today however, I am very happy to say, that with several supportive people behind me. People who believed in me when I couldn’t believe in myself. The voices of those two teachers in my head and sheer stubbornness and some serious hard work (and a fair amount of prayer) I have achieved a 2.1 in my Criminology and Psychological studies degree. So now I am officially Nikita Clarke BSc, who knows what the future holds. I do know that if I choose to, I can still move mountains!!!

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I’ll Rise up in spite of the ache….

03/27/19

Some days, just some days, I think Enough.

There are only so many times, when you can smile, and walk away. There are only so many times I can hear the words, ‘we can’t treat it’.

I know I could have much worse news. I know in the big picture I have been very lucky. The reality however is that some days I hate arthritis. Last year I sat in a radiographers room while they told me I have a problem with my leg but the most realistic solution on how to deal with the pain is to learn to live with it. 6 months prior to this I sat with a surgeon who told me my arthritis was damaging my neck but it wasn’t bad enough to be preventing me from moving, so they currently wont treat it, so I had to just live with it, until it gets worse.

This probably doesn’t sound like a big deal but when your in real. life limiting pain, its hard to hear. Every new joint effected I just ‘suck it up’ and learn to cope. My first memory of Arthritic pain was when I was 11. I  was diagnosed ten years later, just after having Megan.

This condition steals from me every day, my job, career, mobility, freedom, activities. It places limitations and I have to work so hard just to do stuff that an average person can do easily. It destroys friendships, relationships, the shape of what a social life can look like.

Its hard to be the one always complaining. When I was first diagnosed, I would tell anyone within earshot about my diagnosis. I would tell Facebook daily how I was feeling, every ache, every appointment, every new experience. I watched the friends decline, you realise pretty fast that everyone has their own stuff going on, very few want to listen to RA battles.

Rheumatoid arthritis is so misunderstood, people don’t understand that it is life altering and life limiting. This is not a journey that should be walked alone. If a friend tells you they are struggling, do not dismiss them because you cant see the problem, their life has been irreversibly altered and they need you more than ever. This struggling, tearful, tired, even complaining version of the person you once knew to be full of life wont last forever. That friend needs you in this stage if they stand any chance of holding on to the person they are underneath the ache.

Some days, like today I feel so drained by it. When someone tells me to learn to live with it, my very first thought is that I don’t want to live with it. I don’t want to keep adding pain, and conditions and obstacles to my life. I don’t want to be the complaining friend, I do everything in my control not to be that person any more. Days like today, choosing to rise just feels overwhelming. Sure I remind myself of the people battling far worse but sometimes in the midst of your own stuff that just doesn’t help. Everyones pain, be it physical, mental, emotional, is valid. Days that are hard to me would be a breeze to others and vice versa.

In the days I do choose to rise, I hope to be the friend who others can come to. I try to see the real pain under smiling eyes. Often I will come across as the bossy friend. In my desire to fight for those coming behind me, sometimes I can be overwhelming.

RA isn’t the only invisible illness. I love people with all sorts of battles going on. I hope that my own battle has made me more companionate, to genuine battles anyway. My poor husband never gets any sympathy for man flu.

What I know is that this has made me better, stronger and a more well rounded person. I wouldn’t be me without RA. Its quite literally a pain in the neck but its shaped me and moulded me and made me a far better person than I would have been without this journey. I wouldn’t have appreciated life, love and friendships in the way I do now without it. I wouldn’t have appreciated pain free days or days where I can move freely or being carefree or all the little things I still can do, without understanding what can be taken away.

The way to keep moving forward is definitely acceptance. To believe that we have within us the strength we need to survive all that is thrown at us. To continue to rise no matter hard things seem. To believe that rising is always the best option but to never beat ourselves up when sometimes its just too hard. Never allow the days that pull us down to outweigh the days we rise and when they do to never be too proud to ask for help. This life is hard for everyone. We live on this planet with millions of other people for a reason. There is always someone who can and will help. There is always someone with the extra strength to help when our own strength is low.

I have to teach myself that I don’t have to walk this alone. This hasn’t and will not ever beat me. I am a warrior just like all the other RA warriors who are out there, battling onwards.

 

 

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Keep on climbing.

02/27/19

These are the moments:

I love the song The Climb, I’ve written about it before. I love to turn it up loud when it comes on in the car and belt it out while driving and feel like I’m leaving my cares behind.

Recently, while listening to it on the radio and singing it out at the top of my lungs, accompanied by Megs in a duet, I got to the line “I may not know it, but these are the moments I’m gonna remember most, I gotta keep going.”

In that moment in my head I screamed “Oh please, I hope not.”

That might seem harsh. Don’t get me wrong, I love singing in the car with Meg. It’s one of my favourite things to do and actually those are the moments I do want to remember most. The tough moments I want to disappear are those moments leading up to that sing-a-long consisting of meltdowns from both children, a last moment mad search for a watch that Eli refused to leave the house without but only started looking for 5 minutes before we left. Crying because watch couldn’t be found and then more delays trying to put on watch when it had been found. Lunches forgotten, P.E. kits misplaced, pantomime scripts vanishing into thin air. Then the arguing over radio stations, trying to out noise each other, kicking my chair, telling me the world’s unfair.

All this while my hand are swollen, my eyes burn, my knee is tight from where the arthritis is rumbling. My stomach is growling because having time to make myself breakfast after Elijah’s three rounds of breakfast and Megan’s two was never going to happen. Yet another crisis already breaks out as we forgot to pack the new trainers instead of the old ones, or one child has a confidence crisis or meg has a pda panic.

Yes I get through it and yes my morning looks like every other mother’s morning but, these are not my moments. I do not enjoy this bit of parenting. It doesn’t make me stronger or better or wiser. It makes me stressed and sore and guilty that I’m not doing it better, why can’t I do it better?

My kids and life in general give me so many moments and the hard ones do shape and strengthen our character but they don’t define who we are.

Since June I’ve been living with the reality of having a house hold where I am the one who is ’different’.

Obviously a diagnosis hasn’t changed who my husband or kids are. They have always been who they are and we simply can now access services and resources that make their world a little easier, until the world itself learns to fully accept diversity.

Their diagnosis do change me. I’m constantly learning, researching and studying how can I make their worlds better. I deal with the judgement and looks when out in public. I accept the loss of friends when my kids or husband appear rude. I silence the urge to scream when they refuse to engage with people I spend time with.

You see I adore my family, I would fight to the death for them but that doesn’t mean that there aren’t hard moments. These are not the moments I want to remember most.

There are so many moments when I am the outsider. So I have to live my life misunderstood and often screaming in the inside (sometimes on the outside – at Ben). Where other households think logically and work within the confines of social norms taught to us our whole lives, my household doesn’t play by those rules. And while I fully believe the world needs to constantly be learning, changing and diversifying, I also accept how hard it is to change your way of thinking.

Maybe I find it so compelling to learn and fight for my kids because I live, in my home, the life they live outside of it.

The reality of living around ASD, depression, anxiety, PDA and ADHD is that it’s painfully lonely.

People pick at our lives, they don’t understand us so they exclude or laugh at us. They justify that behaviour by thinking that they’re doing the world some great justice by keeping people who are different just on the edges of society, never quite included.

It’s easier to push people who are difficult away. People who take time to get to know, who don’t play the normal social games and who can be different from one day to the next aren’t easy people to be friends with.

I never know how an outing will pan out for us. It’s unusual to have an easy day out where none of the three struggle. Often one meltdown sets off a meltdown in the other. Soon I can have three miserable people in a car, crying, shouting or complaining and too often I find myself wondering why I bothered to attempt an outing at all.

When life throws up challenges, as it so often does, rallying together doesn’t look the same for us. Often if someone is unwell or routine is out the window for hospital appointments or visits or even simply for birthdays or mother’s day etc, instead of rallying round, ASD raises its’ head and the pressure of knowing that conforming to social rules becomes too much. When an event is coming close, it’s regular for all three in our house to back away, to retreat to whatever is their safe space (at the min it’s computer games for all three) and I’m left standing on my own dealing with meltdowns on mother’s day. Or the birthday we’ve worked so hard to make perfect becomes one massive meltdown because of the overwhelming surge of emotion that’s just too hard to process. Or when I’ve had just a horrible day and the pressure of feeling that it might be down to them to fix things becomes too much so instead of holding me close, I’m pushed away. I understand these things, I know the whys and the hows, but it doesn’t make the reality any easier.

Now I know this sounds depressing, where am I really going with this?

The moments that I do want to remember…
The moments that make me want to fight for our little unit of 4. The reason I am always in their corner and how I know they’re in mine. It’s when we laugh and we joke and there are things that only we can understand. When we have a connection with another family who get us. When we make those friends who see past the struggles and love all of us the same.

Everyone has their battles; normal is totally just a setting on the washing machine. My moments, good and bad, have made me realise that. They’ve also made me aware of other people’s moments: to try and be tuned into what moment and what season they are in. To reach out to others, regardless of my own crazy life, and make sure that others aren’t drowning. There are people who I love dearly who have turned a drowning moment for me into a memorable moment with a text or a card or a simple hello.

Help give those you love the moments they’ll remember most.

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A million dreams.

01/31/19

I remember, almost 11 years ago, as I woke up to find a perfect baby girl placed beside me on the hospital bed, the instant need to make this world a happy place for her. As soon as I found out that I was pregnant I had a million dreams for the little person growing inside me. I wanted her world to be filled with laughter, fun and adventure.

I never wanted to imagine that my baby girl would know sadness or fear or be consumed with anxiety. Yet this last year has been exactly that for my precious girl. Two years ago I had a completely happy little 8 year old. She was happily sat in the top groups in her class, she loved reading, loved to learn and was surrounded by a lovely group of friends. We knew that transfer tests lay ahead and assumed that she would happily take this on and enjoy the challenge. She had always been a wee worrier but this was always fairly easily managed.

Then everything fell apart, she began to become more anxious, social interaction became overwhelming. Thankfully we have a wonderful Senco and an excellent educational psychologist who together, along with a PDA diagnosis made it possible for us to access all we needed in order to put these additional issues right.

Having got on top of these extra issues we began, one year ago, to tackle the horrendous system that is our current transfer procedure. Northern Ireland scrapped the 11+ in 2008, this was two tests over three weeks sat within your own school on a Friday during the school day, with no cost involved, all grammar schools accepted the one test. Once this was scrapped there was nothing put in place for academic selection. Northern Ireland do not have private schools or even the economy to support them. Grammar schools didn’t want to rebrand to secondary and there where questions over how schools would differentiate. The grammar schools decided to bring in there own exams but where unable to agree on one set format, so two exam boards where introduced. One exam would be sat over three weeks and had to be taken at your local grammar school, and costs £50. The other test is longer but sat on one Saturday, between the other three and is multiple choice and free. Initially the protestant schools sat the AQE (three tests) and catholic schools and integrated took the GL. The idea was that generally children would only sit one depending on the schools they where interested in but this has changed over the years with several schools accepting either score and more children choosing to sit both exams, (around 2000 children sat both tests in 2018).

Having already decided to sit the AQE we thought that the GL was worth a try to give one extra chance at having options for several schools.

The work load for these exams is intense, our school where incredibly supportive and ran an after schools club from Easter in P6 right up until the tests where over in November P7. Children also did one test per week in school and had to complete corrections at home as extra homework. From the beginning of P7 children do two tests per week plus afterschool’s club. We also chose to use Transfer Tutor app which you purchase a years membership and children can do a selection of tests each day with sample questions from the papers. This was what worked best for us during the summer months when sitting down in front a test paper seemed like too much. From September we tried to do a practice test at the weekends and in October half term we did a practice test every morning.

Having always been adamant that we would never go down the tutor route, we did in the end have a friend do some tutoring once a week, initially to build confidence and then towards the end to focus on the key tricky topics. This really helped with confidence and saw a good increase in scores. This was also something that has now been maintained without tutoring as now we have instilled confidence in her knowledge she is much more confident in her learning.

The tests themselves where very well organised, I have to say Antrim Grammar where fantastic from day one, they where friendly when we where registering, the staff and pupils really put all of our minds at ease on the familiarisation day and on the actual test days all children seemed at ease even though they where in an unfamiliar environment. We where all extremely relieved when the tests came to an end on the 1st of December and we had a wonderful holiday in Disneyland Paris to celebrate (we will honestly use any excuse to go to Disney).

Last week we faced the agonising wait for results. Having very much put the tests to the back of minds (apart from several weeks of obsessing over school admission criteria), we where now ready to see what would come of the months of hard work, tears, tantrums and tests.

We actually spent the day out just celebrating the awesomeness that is Megan as we didn’t need any results to tell us she was pretty wonderful! Megan was as cool as a cucumber in the run up and right until we got home. I think we all felt a little bit ill as we went to open the envelopes. I found this much worse than receiving my own results as all I wanted to do was protect my child and yet I had no control over what this piece of paper would say.

Thankfully Megan did really well, we all, Meg included found it hard to predict how she would do as her practice scores where not consistent. Megs in the past has performed extremely well in tests and this was to be no different. Both of Megan’s scores where good but it was her GL which scored the highest and is the score we have now submitted to her first choice of school. It shows it really was worth taking a shot at that extra test. We weren’t 100% certain on her school choices but we discussed we planned and we considered many aspects, ultimately we’ve now placed the decision into the hands of the Education authority (and we’re trusting God to guide her path).

So after all that, was it worth it?

Yes I think it was, Meg really just wanted to prove she could over come her fear and anxiety, and she did that with bells on! It has also taught her that nothing is out of reach, that hard work gives options, no you don’t always get the score you dream of or the answer you want but you always have options.

Megan is such a wonderful kid, she drives me insane at times and PDA has been a challenge for us all but she fills my world with colour. This kid will never be defined by a number she will never allow herself to be defined by statistics and she would rather decorate a box than fit in one. I have no doubt at all that she will do something spectacular with her life and it will have no relevance to this test or this process but I hope that what she’s mostly gained from this is resilience, strength and confidence.

For this kid, I still dream a million dreams xx

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Love that conquers fear.

08/17/18

Sometimes I feel like the whole world is just filled with pain. I turn on the TV and instantly there is an advertisement for a charity for children starving, elderly suffering, adults struggling.

Ive watched friends walk through the most difficult times. Ive seen so many unfair circumstances and saw families fall apart, sickness overwhelm loved ones and pain steal hopes and dreams from far too many young people.

Sometimes the world just feels like the darkest place.

This week while in Dublin, myself and some friends went to visit Kilmainham Gaol. This is the prison best known for the role it played in holding the prisoners from the Easter Rising. I have a real interest in prisons and the history of them, and the current prison and justice system. I have actually always avoided visiting prisons that are opened to tourist as I couldn’t bare the thought of listening to people mock or belittle the deaths of people, regardless of their crimes. (I know my opinion on people in prisons is an unusual one, but everyone has to care for different things don’t we?). I needn’t have worried in this circumstance however as the tour is done with the utmost respect and each story is told with respect that these where people, not simply hardened criminals. Given the political situation that goes a long with Ireland/Northern Ireland, it is worth noting that this is a well rounded unbiased tour.

What stands out within this tour, far more than any political agenda these men and women had (and of course that a hugely important part of their stories), is the love stories. The things that are most remembered and evoke most emotions are the stories of a marriage just hours before death and last requests to see mothers and families. This Prison emphasises the humanity in the mists of chaos and pain. As I walked through that prison and pictured all the men and women who lived in those tiny cells in that cold stone building I could almost feel the love. I could picture the women imprisoned in the civil war, rallied round together planning how to move forward, sharing how much they had already overcome, sharing finding strength in their heart break and pain. I could picture the men, peaceful and contented going to their death, knowing that their love for their country was cemented forever.

Now lets be clear, none of this is opinion on what was the rights or wrongs in these situations and I know that loyalty and patriotism has brought countries to unneeded wars. I think in the most part, the logical folk of the world know for sure that violence and war is not how we should achieve our goals. This was a different time, when war raged through Europe, the world was a dark and scary place for every one.

My point in this is that even in the most darkest of times there is always a glimmer of hope. I cant really imagine anything more terrifying that facing your execution, or the death of your, son/brother/husband. To have love overcome a fear like that, is there really any darkness that it can not over come?

This doesn’t mean that if you are in a dark place you need to be still and wait for love to find you, you don’t need to love the darkness either. Remember light can shine through in the unexpected places. If the door is boarded and there are bars on the windows, look for the small, still light breaking through the cracks in the wall. Run to that light and do not keep focused on that barred door.

Hold onto the love and light, don’t focus on the pain and challenges but focus on what drives you through to happiness.

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She is simply incredible.

07/19/18

Ten years ago our beautiful little princess Megan burst into our lives. She arrived quickly, (after a few false starts) and surrounded by drama. She has been our little princess ever since!

Megan had the ability from day one to be able to keep us on our toes. Initially she struggled with reflux but after 8weeks settled into a lovely routine and was very content. We instantly knew how blessed we where to have her. Then we got the extra blessing, the whirlwind that is Elijah.

My children couldn’t be more different. Megan was diligent and calm and sociable, Elijah was excitable and anxious and accident prone. With Elijah’s medical needs and subsequent ASD diagnosis along with multiple A&E trips we often counted our blessings to have such an easy going daughter who took everything in her stride.

We noticed from a very early age that Megan struggled with co-ordination, her nursery and early primary school teachers picked up on it but referrals to professionals where subsequently knocked back and her difficulties simply put down to her being a little ‘clumsy’. When it’s your first child and you have very little experience of these things you don’t know that ‘clumsy’ isn’t an acceptable response from a qualified paediatrician.

Megan continued on at school, her coordination causing her very few problems that we could see. She worked extremely hard and had excellent reports, she was popular with all the other children.

Then this year Megan transformed. She was struggling in school, she couldn’t find a way to mix with her friends and she was angry all the time. The every day struggles that come with hurtling towards adolescence became unbearable for her and she began to say she didn’t want to have any friends. She shut herself off from everyone and very quickly became unrecognisable as the carefree little girl we knew so well. Along with these social issues, Megan began to prepare for her AQE exam. Megan has always had extremely positive school reports and meeting with teachers have always resulted in us leaving school, beaming with pride. However at the start of this year Megan started to wobble with some of her work and once she started doing practice papers for her exam, a mask that had been put up rapidly fell away. It was apparent Megan had big gaps in her knowledge. This was in no way schools fault, they had been supportive to her right the way through. But Megan has a large class with lot of children who have needs of their own and therefore it had possibly been even easier for her to create an illusion of what was going on within herself.

School very quickly realised all was not well with Megan, more quickly than we did in fact. They quickly got support in place and kept us updated on how Megan was doing. In ourselves, we already knew there was more to this than meets the eye.

Its worth stating that Ben, has been mentioning Megan having an educational psychologist assessment for the past four years. Pretty much as soon as Elijah was diagnosed Ben said he could see traits of either ADHD or ASD. I put these traits down to learned behaviour from Elijah and Ben.

Here’s were I need to be honest. I didn’t want Megan to have any of these conditions. I didn’t want it for her,Ii didn’t want the difficulties she would face, the social issues or the battles thatIi know that come with these diagnosis. As much as I know that  diagnosis opens doors and that these conditions are as positive as negative I honestly just wanted an easy life for her, and to be honest maybe I wanted an easy life for me too.

So this is where we are at, Two weeks ago after two months of multidisciplinary private assessments (yes they are accepted by the EA and the NHS). We were handed a report detailing our little girls ASD, PDA, ADHD and Dyspraxia.

Megan is the prime example of how girls mask autism. The majority of girls are diagnosed at secondary school as this is when the social issues become too much to mask. Girls are often misdiagnosed with anxiety or eating disorders – Megan has had both of these issues flagged by different bodies this year. Girls can be viewed as moody or hormonal and left to their own devices.

I am filled with guilt that I have missed so many of Megan’s needs, I know girls mask but I am her mother and i know her. I live with a husband and a son who have ASD and I have almost finished a psychology degree. Yet I buried my head in the sand over this. I wanted my princess to have the perfect school life, to be top of the class, to have all the friends and to be musical and arty and academic (i never pushed her these where simply ideas in my own mind). Megan saw what was expected of her, or expected of everyone, in a round about way, and she moulded herself to that as far as she could. She put that mask on and she pretended to be whoever she needed to be for whichever situation she was in. When she couldn’t hold that any more she had no idea who she was underneath it all and its been painful to watch her try to navigate that.

The positives, however far outweigh the negatives. Our major positive in this is that we have the most wonderful SENCO in school. This woman took the time to know my daughter as her teacher, she saw signs of issues before we did and she has been Megan’s greatest champion. We where given a diagnosis for Megan the week before she finished school (but the report was only two weeks ago). Initially Megan didn’t want people to know, however she was adamant that she would be telling the SENCO. I’ll be honest I was really nervous. Private diagnosis have to be accepted but they’re not always welcomed. Lets face it a child with additional needs means more cost for a school, more paperwork and more red tape. I needed have worried Megan was offered the kindest words, some amazing support and practical help straight away.

(Megan has now told several people and asked me to write this blog)

Since receiving the full report Megan has already been like a new girl, its as if she’s been given permission to be who she really is. She understands more about herself and her feelings. She knows that help is on its way in the form of OT and hopefully some courses and therapy. We’ve reminded ourselves as a family that this is diagnosis not labelling. Megan is the same girl she’s always been, just now with access to any help she might need.

Elijah’s response to his sisters Diagnosis was ‘you stole my super power’ all three then proceeded to go about arguing over ‘who had it first’. A fairly surreal moment I must admit.

So the Clarke’s are now a family of which three have ASD. We are still the same, we are happy. We are ready for this adventure, and the battles and the laughter and the tears. These three will always have each other to understand what they’re going through and they will always have me in their corner ready to fight for understanding and acceptance.

My family are simply Incredible.

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A summer full of Super Heroes.

07/11/18

This summer I decided to tick off another item on my bucket list. I decided along with a friend to do a one night trip to Disneyland Paris. Obviously I have been to Disneyland Paris 12 times before. The bucket list part of this trip would be to see how much we could fit in, in just under 48hours. We also travelled by Eurostar via Paris which was also a new experience for me.

8 years ago today I booked the first trip for my children to visit Disneyland Paris. Ben and I had been twice before and we have been 11 times since. Its safe to say its definitely our happy place. Our first four trips where with Eurostar direct to Disney. We then travelled by plane directly from Belfast and once from Dublin. Our go to favourite way to book now is to book our hotel directly with Disneyland Paris, either online or using Annual pass discount over the phone. We always book our first one or two nights offsite as Belfast flights are always in the evening and we don’t like to miss a whole day of our holiday. We have also done one trip completely off site (in the b&b hotel) and this was great too.

For this trip, as I was visiting England anyway. We booked the Eurostar to Paris and then would get the RER into Disney. This worked out a fraction of the price of the direct Eurostar and you also get to Disney around 3hours earlier than going directly. I stayed with my friend in Croydon the night before we travelled. We got up at 3am to get the 4am night bus into London St Pancras station. The night bus was an experience but easy enough to use, reliable and cheap. Once we got to St Pancras, the staff could not have been more helpful. There was a small queue but also a disabled access queue. Here the staff member checked us in, amended our tickets as the type of train had been changed, and then asked how could she assist me. She helped me carry my bag through security.

We travelled premier class on the way out which meant that we got breakfast while on the train. This only cost £10 more and was well worth that cost. The chairs are slightly bigger with more leg room and you get, tea or coffee, a croissant and bread roll, a yogurt and an apple as well as orange juice. The staff again where very friendly and helpful. We where on the train for around 3hours. When we arrived in Paris, we headed for the ticket machines to get out tickets that would take us on the RER to Disneyland Paris. The ticket machines have an option to do everything in English so its fairly straight forward. The tickets cost around £7. It took us around 15minuets to get our tickets and get onto our first train, we where on this for just one stop and then we swapped to another train which we where on for around 40mins which took us directly to Disney.

We arrived in Disneyland Paris around 11am, the queues for the main park where long and it was also already over 30degrees. My friend queued up to drop our bags off (we get free bag storage with our annual passes) and I headed over to studios where we hoped the queues would be shorter. Thankfully there was no queue to enter the park and I headed straight to guest services as i needed a new access pass as I have recently renewed my annual pass. It took around 20 minuets in the queue and I had no problems at all obtaining my access pass by simply showing my blue badge. I was given a two day pass as if I wanted a year long pass I would need to go to the annual pass office.

Walt Disney Studios have recently introduced an new app called lineberty, this app allows you to book a slot to meet a character of your choice and updates you with how long it is until your turn. This means that you can carry on with your day rather than standing in a queue for several hours. This app has had some negative press and my friend and I were very nervous about being able to meet any of the new characters as they are so popular. We were watching the app while we where on the Eurostar, and while we could see it go live (at 9.45 for mickey, buzz and woody) it told us we where too far away to be able to book a slot. We where really hoping to meet Captain America and the Incredibles. Theses don’t open until 10.45 so we where hoping there would still be slots available when we arrived. My friend managed to get an incredibles slot while we where still on the RER as we where under the park. I managed to get a captain America slot while waiting to get into the main park around 11am. Overall our initial impressions of the app were good. The following day we did have more trouble booking a captain America slot but the cast member was able to help us and give us a time slot on a piece of paper, we also managed to get a meet with buzz later in the day as more spaces became available. I do think the app is a good idea, its a fair way to queue (there are no access slots as there is no queuing required for anyone). We met each character within ten minuets of our time slot and we where not rushed for any and had excellent interaction. Its definitely fine if your there for a few days and if you’ve been there before or not on a tight schedule. I can see the frustrations if you only have one day and a child desperate to meet their favourite character and I can also see it being slightly more problematic in peak season. However i think once people adapt to it, it will work well. One downside was that lots of people didn’t know about it, they would go and join a queue only for cast member’s to have to explain the new system. It is explained on the park programme but its not massively clear. I’m not sure that had i not been part of the Disney community and on pages such as Disneyland Paris for Brits, I might not have been as aware and might have missed out. I also think its giving cast members a bit more grief until the kinks are worked out so pleased be mindful that is not the cast members you see who make these decisions or who have the ability to decide on if you get to meet a character or not so please be kind and respectful to them.

When we first booked this trip I have to admit I was hoping to catch the end of pirate and princess season. My main priority was a Disney trip so when I realised it was summer of super heroes I didn’t mind at all. Now as a kid and teenager I loved super heroes, although I must confess I was more of a DC fan! When I realised I would be here for this season and also with all the hype around the latest avengers film I realised I really need to jump onboard the marvel band wagon. This pleased my son massively as he has been desperate to watch all of the Marvel films. I have to confess despite my best intentions I only managed, the two guardians of the galaxy’s and the first captain America, oh and Spider-Man homecoming before we headed off to Disney. Thankfully I do have a limited amount of superhero knowledge and what I didn’t know was easy enough to pick up and follow enough to enjoy the season.

I have to say Disneyland Paris have done really well with this season. There are three marvel shows and a meet with captain America along with marvel themed meals and snacks. You also have the option of booking a marvel package as part of your holiday where you can also meet Spider-Man and go along to a marvel meal where you meet two of three characters, Thor, Captain America or Black widow. Disney have also now opened up this meal to people not on the package and if there is availability it can be booked three days in advance of your trip via the normal reservations number. We didn’t do the meal as we had already booked inventions but it has been getting great reviews. I was originally disappointed in reports that you could only meet two of the three characters and it was just a simple photo op instead of the characters roaming around but actually it seems to have worked well. I would have booked this meal if I had the kids with me.

We only managed two out of the three marvel shows as two of them are outside and the temperatures in Disneyland Paris that weekend where unbearably hot. The indoor Marvel show, which had queues of up to 4hrs long the first weekend, is incredible. There is disabled queueing and seating for this show (i had heard their wasn’t). While we where there the queues where around 40mins long and it did fill for every viewing but only around 10mins before it was due to start. Ill not include any spoilers for this but its a high action show which has something for everyone. Its certainly proving that DLP are upping their game when it comes to new shows and theming. We also managed to catch the Guardian’s of the Galaxy dance off. It was extremely hot while we watched this but everyone still entered into the spirit of things. Its fantastic because it includes music that everyone knows so the whole crowd sings along and you cant help but dance along. It lasts around 15mins and includes people from the crowd being chosen to join in. They characters even come into the crowd and dance with people too. I really enjoyed this and it was probably one of my favourite experiences over the whole weekend.

I do feel Disney could have included a few more meet and greets for Marvel season, even if Spider-Man had kept his meet for everyone and they had added on captain America that would have been a better compromise. I am all about the characters, I’ve met Spider-Man lots of times and I’m not a marvel fanatic but I feel like if id brought my child for the first time and they where a huge marvel fan (marvel packages weren’t available from the start) you might be a little disappointed with who you could actually meet. Its still a very well themed season and a huge improvement on season of the force.

As well as enjoying all the newness of summer of super heroes, we wanted to enjoy all our usual favourites. With arriving on a weekend in June, in sunny weather, we expected it to be very busy and went with minimal expectations of what we would be able to get done. The crowds however where not too bad at all but the heat definitely slowed us down. We had to stop and drink a lot but we enjoyed people watching and of course Disney snacks!!

We did managed way more than expected, we did some sale shopping, rode big thunder mountain, hyper space mountain, crushes coaster, star tours, the flying carpets and my friend went on TOT. We met captain America twice, the incredibles, Buzz, Minnie mouse and Darth Vader. We watched two of the three marvel shows and went to stitch live and watched the starlight waltz on the castle stage. We also went to Brunch in Inventions in the Disneyland Hotel which had an Hawaii theme which meant we got to meet Lilo and Stitch, along with Donald, Daisy, Mickey, Minnie and Chip and Dale in their Hawaii shirts. We spent two hours enjoying our meal and meeting characters. We had excellent interaction with the characters and outstanding service from the staff. I know inventions is expensive but it is worth it every time for the interaction alone.

Of course the very best bit of our trip was getting to watch the parade twice. I’m a little bit obsessed with the Parade. I know when people go they like to watch it once or twice. I’ve been known to have a hissy fit if i cant watch it every single day. I love to sing and dance along and I never care if i look silly because I’m never as happy as i am when I’m watching a Disney parade.

This was the first time I’ve ever watched the parade from the disabled area and both days we had the pleasure of meeting some really lovely people while waiting. Unfortunately this was also the first time since visiting Disneyland Paris that i have had someone question my Disability. While waiting for the parade on Saturday a lady felt the need to come and shout at me and two others who where sitting on a seat that how could we possibly be ‘invalids’ as we didn’t look like we where and her friend was far more deserving of a seat. To access the disabled area you need to show a cast member your green access card. To get that green card you need to show evidence that you have a disability. No one will be in that area that shouldn’t be there. I try very hard to hide my disability, I hate that i am disabled and quite often I am embarrassed by it. My condition isn’t obvious and requires explaining, this is not something I’m willing to go into with a stranger. The fact I have never sat in that area before and I was on that day (with my walking stick resting on my knee), was because I was struggling, the heat, the travel and the early start had taken its tole on my dodgy joints. I was also on this trip to tick an item off my bucket list. I have a bucket list because this condition and my medication cut short my life expectancy. This woman knew none of this, she made a snap judgement that was entirely based on my age. I wish I hadn’t needed that seat and I wish I wasn’t entitled to be in that area but life isn’t a fairy tale and it made me sad that someone could remind me of that in the place i go to forget reality. It did not however ruin our trip.

We made some lovely new friends while on this trip, this is what I love in Disney 99% of the folk who go there are amazing. Disney breaks every language barrier and forms bonds and friendships through the smallest of things.

We decided not to Disney bound this trip but we matched Disney style outfits, we did Coco for the first day in honour of the bucket list and on the second day we did retro Minnie/captain America as we wanted to mark season of super heroes but i also wanted to wear my California ears again and also my awesome new retro Minnie skirt which my friend made for me, (note to self do not twirl on main street in this, you will show your bright pink underwear to the whole world).

All in all it was a fantastic trip. I highly recommend summer of super heroes especially if you have a little (or big) marvel fan. Captain America is an awesome meet as are The Incredibles. Inventions is always worth every penny. The parade is the highlight of any Disney trip (well the parade AND the food) and although traveling on the Eurostar via Paris is very straight forward, I’m gonna stick to flying in future.

Thanks To Nicky for sharing this trip with me and helping me tick off an item on the bucket list xx

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