Around this time last year the news was breaking of a new virus spreading across China. Although it sounded a little strange I don’t think anyone had any idea of what lay ahead.
Fast forward to one year and the world as we knew it has completely changed. Over night we went from traveling, hugging, socialising to living behind closed doors in bubbles.
There hasnt been anyone untouched by this past year. Even those who have made millions, who have thrived in the pandemic will have still felt the impact of the lack of human connection the past 12 months.
The thing that has personally stood our for me, however, is the position of the ‘vulnerable’ in society. I have had an autoimmune disease for the past 13 years. I know what it is to take weeks or months to fight off a basic common cold. It took me a year, countless antibiotics and a hospital stay to fight off pneumonia five years ago and I am still living with the long term damage. I am very much Vulnerable.
In February when it started to become apparent that this new virus was spreading, one of the first things we heard was how the vulnerable where the people who would need to be cautious. I remember sitting in my March Infusion and talking with the nurses about how we would need to be cautious around people, just like we have to be every single winter with the flu as we are all aware how dangerous something that is seemingly straight forward for a healthy person can be for immune compromised people. We are not a group of people who use the term ‘only the flu’ as the flu is life threatening, but we were certainly using ‘the same as the flu’. There was already a buzz around how it was only certain people would be effected, that kind of talk is something i’m used to, I have the discussions every year with my own family about how I need them to get the flu jab to protect me and I know only too well how it falls on deaf ears. None of this was new.
March is when the tone changed. When things began to get serious and the tides began to turn. As soon as restrictions began to get put in place the ‘only the vulnerable’ narrative grew stronger. I watched, hurt and horrified as social media filled with anger of how the people who are scared should just stay inside. How the healthy should be allowed to get on with their lives. As the death tole rose I watched as each human being, mother, son, grandparent, parent, was reduced to a ‘person with under lying health issues’. You see its true, the majority of deaths are people with under lying health issues. That does not make that life of less value.
My condition means that I have had my life altered and my life limited. It is most lightly that I will die because of an issue connected to my Rheumatoid Arthritis or the medication I have to take to control it. It is unlikely I will live to 100 and I am ok with that. It is however very unlikely that I would die now, at age 34 without getting to see my children get through school. It is also likely that if I caught coronavirus I would, as the shielding letter put it ‘not have a positive outcome’. However if that did happen I would simply be someone with underlying conditions because ‘only the vulberable’ are really at risk.
You see since I was 21 I have been adapting my life. I am never going to run a marathon, I cant have a career in the Army or the police or be a paramedic, (id have never done any of these things anyways). I had to give up a job I loved, I cant run with me kids or play football, or even bounce on a trampoline. My life was derailed the moment I became ‘vulnerable’. Every winter I already drilled into my kids about washing their hands in school and home, (yes they washed their hands all the time too). I was always anxious about colds and flu and chicken pox being carried home but again we adapted. I picked myself up, looked at what I could do instead of what I couldn’t. I found a way to study, to get qualified, to volunteer. I found hobbies and things I loved and made firm friends. I even run my own business with my husband. My life is full, its fun, its relevant. Yet there are these people who still maintain ‘only the vulnerable’ as if they are the least of society, the irrelevant.
The hardest thing I read during the pandemic was when an a person died, they were elderly but doing well. Someone pciked up on the fact that years prior this person had had a stroke, people were out in force with the ‘they were ill’, ‘underlying health issues’ and ‘vulberable’. The thing that stood out about that incident to me was that this person had battled a stroke and won, was recovered and living their life, then they caught this virus and to many their life became irrelevant because to recognise that their life mattered and was equal to everyone else’s would mean a recognition of the need for a community effort to tackle this virus. A sacrifice from everyone to keep all people safe.
In creating the ‘only the vulnerable’ narrative, the government almost created a common enemy, a scape goat. A group of people to be angry at. You cant see a virus and all the wishing in the world doesn’t make it go away. I mean you can even deny it all you like and insist its fictional but while the hospitals continue to be beyond capacity and people continue to die, restrictions aren’t going to change for those opinions. This lead to the just keep the vulnerable at home attitude. Now what amused me about this was that I saw so many people who have their own illnesses but where outside of the shielding group shouting for people just to stay inside and let the world get on with what they where doing. Now I get the logic, I really do. Shielding brought numbers down, restrictions could ease, deaths lessened. However staying in for 1 to 2 years is going to damage anyone’s mental health but aside from that, those of us who are vulnerable aren’t all elderly immobile people with no responsibilities. 4 million people had to shield, lots of those people are parents who have children who need to go to school, employees who had to go to work, patients who need to go to hospital. I know the most mobile active 80 year olds who still have to do their shopping and banking and live their lives. Its not as simple as locking us all away because you miss going to the pub or the cinema or going to Spain with your mates. Guess what we miss that too but we’d miss being alive even more.
This might feel like a massive rant instead of a blog but really we – the clinically extremely vulnerable, need you to see the people and not the statistics. We play a part in this society, we are parents and grandparents, we are sons and daughters, we are educators and health workers and friends and family. We matter as much as you do. We play our part we protect ourselves as much as we possibly can but we need you to play your part too. This sucks, for everyone, for some this has taken more than it has for others. Life must always be our priority. I in no way diminish the loss of a business, peoples declining mental health or the devastation of broken dreams, vulnerable people are experiencing those horrible situations too and they all need addressing. Please just don’t dismiss the vulnerable, remember we are more than a label, one day you might suddenly find yourself in this category and you will realise an illness didn’t steal your identity but society did.
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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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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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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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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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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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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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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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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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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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