Tuesday, 27 June 2017

Angels, Aleppo and Appreciation

**I wrote this last year but discovered it again this morning. I wanted to share it, even if it's somewhat out of date & a slight departure from what I normally focus on **

Today has been a game of two halves - two polar opposites of emotion. I went to bed last night consuming the news coming out of Aleppo and as my head hit the pillow, tears rolled down my cheeks. With each new tweet the horrors unfolded...medics being murdered, those loyal servants to their people who have worked tirelessly to protect & mend their fellow human beings, women and children reportedly being executed on sight and hundreds of men missing. I watched videos of Syrians begging, yes begging, for international support, for salvation, for our aid. This is not new - they have been calling more intensely on us for several months now but government after government around the world have put their hands over their ears and eyes. Members of the public who have become so used to these images, Tim Farron described it as 'compassion fatigue', have become beguiled by fanatics telling us these children, these families needing our help are terrorists wanting to harm us.

I can openly admit that I have become somewhat obsessed with Syria, with Aleppo. I feel no shame in that - my obsession comes from a place of disbelief that we have not helped, that genocide is taking place yet we, humanity, has become so isolationist, so self absorbed that we have idly sat back and allowed this massacre come to pass.

This morning as I brushed my eldest daughter's hair, I tried to imagine what my fellow parents were enduring in Aleppo. With each brushstroke I pictured the devastation of not being able to protect your child, knowing that your life was likely to be lost and I wondered the fury that must be racing through their veins knowing the whole world knows what is happening and is simply ignoring it. As we walked to school I felt a sense of both sadness and appreciation. Sadness at being so utterly redundant to help, so pathetically incapable of making a difference. Appreciation that we were free and safe to live life - to criticise our government without fear of reprisal, to question decisions, to walk in our town without threat of violence. I felt an overwhelming sense of guilt at that feeling - why should some of us be lucky and some not.

I then attended my youngest daughter's first Nativity...it was a beautiful cohesion of shambolic loveliness. Little people singing, dancing, forgetting their lines, pulling their skirts up over their heads and yet it was entirely peaceful. As I watched Bean, again I felt total appreciation for seeing her fulfilling the role of angel. Three years ago, I wondered if my little baby who was skin and bone, floppy and desperately unwell, would make it to her first birthday, let alone the joy of her first show. As that sense of gratitude washed through me and I listened to the Priest's words about reminding ourselves to be kind, to care for others and protect one another, I felt both hope and despair. Hope that Bean had achieved so much and despair of the world she was growing into.

The juxtaposition of those emotions reminded me to never stop thinking of those people in Aleppo, to not remain silent & pretend it isn't happening. To shout from the rooftops that we must do more to be kind, to care for, to protect. I've lost my faith in God, in fact I'm very angry with him, but I do hope that the messages I heard today disseminate. For every awful atrocity that we hear of, it is a scar on humanity. It should hurt every single one of us because the day it doesn't, we are truly lost. With every cruel act we are consistently seeing both the negligence & then the beauty of mankind. Men and women running to help, people donating time, money, possessions to those in need. If that behaviour, that spirit, could be channeled up to government what a difference we could actually make.

Bibi xx

Friday, 16 December 2016

EDUCATORS, choose your words wisely...

As an ex teacher (of many many years), I write these words from both the perspective of a parent and a teacher...

This week has been wonderful, well until today. On Tuesday I watched on as my youngest, Bean, took part in her first Nativity. She was an angel, both figuratively and literally. With each new song, she sang the words, did all the actions and remained on stage despite a lot of her little comrades needing to be comforted by their parents. I left on a complete high - she had finished her first term of preschool, developmentally had come on leaps and held her own on stage. Her targets from October had been met and she had made it into the 30-50 month development bands (she was 3 in September).

Then today, I came to collect her from the Friday session to be greeted by a rather stressed looking Preschool Manager. She, LOUDLY, asked if I could stay behind and give her tips on how to "manage" my daughter. Rather unfortunately I had my eldest with me too, so the impending conversation had to be done while trying to keep both girls calm and sensible. She proceeded to tell me that they were "at the end of their tether" with her as she was emptying boxes repeatedly, had scribbled in books, had broken a few items belonging to the preschool - today she took the keys off their laptop keyboard, which was presented to me in front of onlookers of both staff and parents for maximum levels of embarrassment.. "We're short-staffed", "we can't accept this if it's costing us money". So, I questioned what the sanctions were for a child who is repeatedly disobeying their rules. This question seemed foreign - the reply left me rather dumbfounded  "no, we've never put her in time out, we just tell her not to do it again". We leapt from never instilling sanctions to "we think she should have a 1:1".

As any good educator knows, management of behaviour is a series of steps. Setting out expectations, finding a hook that can get buy in from a child to want to follow the rules and creating a pathway that works for both the child and school. Bean's keyworker has been away for approximately a month now - she has targets from her portage teacher and the preschool follow them. She has really missed her keyworker, frequently asking me where she is. Yet, none of this was taken into account. Instead I left feeling humiliated, that they didn't want her there and that a lack of staff planning had resulted in a rather difficult day.

Now, before anyone says I'm simply shifting blame or responsibility...I'm not. I believe if she misbehaves there should be a consequence - there always is at home. I even made this point in our initial meeting, reiterating a number of times that they would need to be firm. Instead I feel they've made no attempt to put in place basic, yes basic, measures to ensure she knows what is allowed and what is not. I respect that we often have to hear (or say, when we're on the other side!)  unpleasant things but it is the manner in which we deliver that information that leaves a parent feeling safe, secure and reassured that the child needs help, rather then they are a burden. It is also essential to keep a parent informed. Until today, I was under the impression that Bean was doing fabulously. She was attentive, making excellent progress and was kind. So today came as a shock. 

Being an educator gives you enormous power, with profound responsibility. Every word you utter provokes a reaction and a parent doesn't simply hear and forget; rather, they swallow it, digest it and frequently feel the need to regurgitate it over and over again. You are responsible for how difficult and sensitive information is delivered - you find a way to communicate that in an honest yet supportive manner. By conducting this in an open environment you are leaving a parent to feel exposed - you are laying bare all the inner concerns or worries that keep them awake at night. Privacy and compassion are essential - ask a member of staff to tend to the children so that you can speak with the parent, to allow them to cry (if they feel compelled to do so) without fear of upsetting their offspring; or simply schedule a meeting at an appropriate time where an open debate can take place and you move forward united in the best interests of the child. 

Anyone who has worked in the classroom knows that the end of term often brings out the worst in children who are tired, facing chaotic changes to their routines and are excited for the imminent arrival of the big guy in the red suit. Today, has left me feeling despondent and disappointed. After a term which has radiated such success, I move towards next week feeling like I want to pick Bean up and never go back.

So finally...Educators, teachers, keyworkers, please choose your words carefully. They have an impact and when a parent already has what feels like the weight of the world on their shoulders, you can make or break them. 

Saturday, 26 November 2016

Hope Is A Waking Dream

Yesterday evening I had one of those awful moments where something happy led to a wave of sorrow. We'd had a great day - fab news from Bean's observations from her keyworker at preschool; things like that always lift my spirits and make me feel confident in the approach we're taking. We'd come home, played some games, sang a few songs and laughed a lot. As I held her in my arms and looked into her smiling eyes, I felt a tsunami of emotions hit me. 

In an instant I'd leapt forward 10 years imagining having to discuss the difficulties she might face...the major one being sustaining relationships or having a family. I pictured this beautiful person suddenly having a whole wealth of problems and anxieties firmly being sewn to her shoulders...and my heart broke. Knowing that it would be me, my voice, sharing that news with her and being aware that I'd be watching her innocence evaporate as each word would be uttered.

You see, the every day doesn't frighten me. We live and breathe genetics and the impact it has on our lives - for the most part we've been incredibly lucky and she has been quite the enigma, rarely possessing the vast traits of WS. But the future? That has the power to send me into a quivering wreck. I get moments where I wish I could place her in a little bubble and prevent her from facing any of the potential hurt and sadness that's round the corner. I would happily share my home with her for the rest of our lives but I know that wouldn't be enough for her. She has a zest and power for life, for new experiences. It's those awful glimpses into the future when I abandon my normal positivity and begin only seeing negatives. 

It's in moments like this that you have to take a breath...catch yourself and say that the only thing that counts is right now, this minute, this second. Guarantees and certainties simply don't exist for any family but perhaps those of us with children with SEND know this or feel this more than most. Today is the focus and tomorrow should be viewed with hope. As Aristotle said 'Hope is a waking dream'. Hope is the vessel that will guide us to tomorrow and great things can & will be achieved. As long as hope fires our core, the conversations of the future, the moments of sadness can be vanquished by the joy, love and dream of all that she is and will be capable of. 

Bibi xx

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Friday, 21 October 2016

Thank you and Goodnight...

This week a very lovely lady that I know died. She was 42, a mother, a wife, a daughter and a professional. Her worklife was devoted to supporting and helping adults with learning disabilities- ensuring they had a safe home, access to work and an environment that met their needs. Her home life was one of happiness - she had longed for a child and had 3 years ago been been blessed with a beautiful little baby. She was a vivacious, enthusiastic, hilarious, dynamic, intelligent woman - her company made you feel confident, heard, understood and, as one friend described it, lighter.

When my daughter was diagnosed I sought out those who I had faith in, those whose experience or understanding meant I could talk to and who I believed would give me solace in our time of need. I will never forget the advice she gave me. She told me to just carry on as normal - to treat her like anyone else, not to suddenly see her as 'different'. Instead to embrace any of her nuances and expect nothing less than I would have done when bringing up my eldest. If my eldest got to have swimming lessons, do that with her. If my eldest sat on the step when she misbehaved, so should my youngest. She told me never to be embarrassed, never to worry what others thought/think, to focus on our road ahead and keep walking towards our goals.

I listened, digested & followed her advice and I truly believe my family is healthier for it. What she taught me was acceptance, not tolerance. She showed me that diagnosis is positive and it's not the label that counts but how you approach it. I wish I had let her know more vigorously what an impact she made on my life, her words entirely changed my approach and my reaction to our news. For the short time I knew her, she altered the future path my family would take and there simply aren't enough adjectives to describe the gratitude I feel for her wisdom and advice. It seems painfully unjust that her entire family is now bereft of such a lady. It made me realise how fortunate we often are as women to have these encounters, these friendships and how, in such a short time, we can share so much.

So thank you, thank you, thank you. Every conversation we had changed my perspective and opened my eyes to the very real possibility of hope and happiness. I wish that your time on this earth had been longer - you gave so much to so many and I know that you will always be remembered. 

Goodnight my friend xx

Thursday, 6 October 2016

Dear Kindness...where did you go?

Dear Kindness 

"No act of kindness, no matter how small, is ever wasted." Those words were written by Aesop, an Ancient Greek writer who lived in the 6th century BC in Athens, Greece. It's true isn't it? An act of kindness, whatever that looks or feels like, is profound. It can be life changing in fact. So I'm wondering where you've gone? What happened for you to abandon us? or perhaps, what have we done to sacrifice you?

Over the last two years, specifically since 20 August 2014 (the day my daughter was diagnosed with a genetic deletion), you have become one of the most significant words in my life. I've clung to your importance, I've sought you out through professionals, friends and family. I've been disappointed when it feels you're absent, when I've heard people use painful words to describe individuals like my child. When I read a letter from a mother who lost her child to suicide, begging for you, for kindness from others. When I watched a documentary (A World Without Down Syndrome) that suggests the medical world wants to eradicate a type of person based on their genetic profile. I wonder when we lost all sense of direction and became so cruel - surely it's not who we want to be or should be. 

Kindness, to me, you are about suspending judgement - thinking before we speak, choosing our words, our language carefully. No-one wants to live in a hyper-sensitive world, where we cannot talk openly but we must also recognise the power of our words. They can damage us, they can limit us and, sadly, on occasions they can destroy us. Kindness, you are generous, warm, patient, forgiving...so often these days we choose aggressive, blunt, curt and pernicious language to assert ourselves. Why? Why have we cultivated this behaviour? From the snappy 'I don't care' slogans on our t-shirts, to our keyboard warrior antics on social media. 

Kindness, you invite us to take a breath, to pause, to consider others. To take the time to be thoughtful and just. I've been acutely aware of that need to be gentle, to be respectful, since my daughter was diagnosed. Ive seen people become uncomfortable by her (she's 3), yet still I have witnessed people feeling unsure or uneasy by some of her mannerisms. It would take nothing just to be kind, a few minutes of your time to smile, to say hello 50 times if necessary. Remember Aesop's words, no act of kindness is wasted. Truly, it is not.

Every action has a reaction, every word has an effect, every wound leaves a scar, every smile lifts the spirits and every act of kindness has an impact. In a world, which at the moment seems bereft of positive stories, we need you Kindness...we need you to shine a light on us all. We need to bask in the glorious truth that kindness has power, it breaks barriers and it unites us. So, Kindness, if you can hear me, please come back. 

Yours sincerely,

Bibi xx

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Friday, 23 September 2016

Chromosomes, Coffee and CANADA ❤️🇨🇦

This summer we were fortunate enough to visit family in Canada. We hopped a plane to Toronto from London...I'm not going to lie, the prospect of a 7 hour flight with a 6 & 2 year old was not exactly thrilling but they were angels. Seriously - total angels! We had lots of food, a couple of glasses of wine (not the kids obviously), some strong coffee, a ton of Disney and suddenly we were touching down in this vibrant city. As soon as we disembarked I had a wish that I'd visited before children - we would've had so much fun!! 

A yummy dinner, a good sleep & before you knew it we were greeted with a new day. We took a quick wander round the city...a little spy of the CN Tower, the Rogers Centre (Go Jays!), Ripley's Aquarium, the cool orange signs, the immaculately clean streets...I could go on. As we stepped I looked at my girls and thought how lucky we were to be sharing this moment together. Such a cool trip & it had barely begun. 

Later that day we jumped in our hire car and headed towards Lake Huron. 3 hours zoomed past and finally we arrived at a little piece of heaven. Have you ever found somewhere and immediately felt at home? As if all those times of questioning where you fit in, why you've always felt the odd one out, suddenly seemed to dissipate. It was incredibly freeing, in fact it made me quite emotional. Now, before anyone says it, I'll do it for you...we were witnessing Canada (Lake Huron to be exact) in all its blissful summer glory. I know that come winter this place transforms into a sub zero winter wonderland...but perhaps with less of the wonder if you've endured Canadian winters for a lifetime! But, despite those nagging thoughts in the back of my mind, I loved it. I adored how polite people were, the extraordinary level of kindness extended to us, how welcome we felt (despite our British accents - trust me, that isn't always the case when you travel) and the relaxed nature we continually encountered. 

During our stay we went to a Celtic Music Festival...one of the beautiful things about Canada is the diverse community. So many families travelled far & wide to North America, to settle, to make it their home. It's what my family did - Irish born but London based, my relatives left for a better life and they found it. For 40 years they have carved out careers, relationships, homes...a new way of living that they have fully & unquestionably embraced, but their Irish roots remain apart of who they are. I saw that history of birth running through the veins of the towns I visited. The Celtic traditions: the music, song, poetry, was evident to see and hear. It was, without sounding crass, magical. All these many nationalities embedded together under one flag, it made me feel proud to be there...& made me feel a million miles away from all the negativity, hate filled problems Brexit has caused in the place I call home. It made me want to stay there forever. 

My aunt described it as a 'kinder community'...as a parent of a child who faces the potential of a lifetime of challenges and obstacles, this was deeply appealing. I'm sure if there are any Canadians reading this they will think I'm being too idealistic or viewing their country with rose tinted glasses, and maybe I am but something about it clicked. It felt right. And surely that's what it's all about, finding somewhere that you feel passionately about. 

So what now? Do we take the plunge and try a new life? I'm certainly nervous at the prospect, the million and one things I would need to do to make it happen but if there is even the slightest hint that we could give my girls, Bean especially, a kinder and more understanding future then I want to grab hold of that & not let go. It's hard for others to understand that...unless you have a loved one who has an uncertain future then all this might seem silly but I know that we have to do everything & anything in our power to improve and enhance our lives but more importantly the future for our girls. 

So...although nothing is certain yet, I hope we have the opportunity to try something new & give us all reasons to be positive for the future.

Bibi xx

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Friday, 9 September 2016

On the eve of your 3rd Birthday...

Dear Bean...today marks the eve of your 3rd Birthday, a day I feel delighted to reach. This time three years ago I headed in for an induction - they began the process and warned me that I would be in hospital for at least 48 hours to allow the meds to take effect. Your Daddy decided he would nip off for some lunch and assured me he would be back quickly. He was true to his word & within 10 mins he was back in the room and rather surprised to see that I was in full blown labour, being told to walk down to delivery. In a further 50 mins you arrived. There was no time for epidural (despite me assuring the numerous doctors & nurses that I could definitely stop you coming out - clearly I was not thinking straight!). 

I was so proud to have given birth to you - you were a dinky bundle of love and joy to our family. It was without doubt one of the most momentous days of my life. I returned home a few hours after your birth, climbed into my own bed and the next morning your big sister, Bibi, came into meet you for the first time. It was truly magical. 

The next year brought so many heartaches and strains that this beautiful day soon faded - it became too painful to even think about and by the time we reached your 1st birthday I was almost defeated. I was so sad that I'm ashamed to say I spent most of the day in tears - I desperately tried not to be this way... being negative is really not in my nature but it was overwhelming & overpowering. I couldn't even face making you a cake. I know that must sound appalling and I feel terrible guilt about this but sadness makes you do silly things. I remember watching Bibi being so excited for you - I was so proud of her for how patient and kind she was when you were so unwell.

Within weeks of your 1st birthday you were amazing me...you caught up on so much, you were getting stronger, gaining weight and your character was blossoming. Over the course of the last two years you have become the most wonderful little person - nothing scares you, you meet every new day with relish and constantly want to learn. The bond you and Bibi share brings a smile to my face every day. 

This year I can look back on your birth with a smile & feel pride in how far you have come in three years. I truly believe you are destined for wonderful things - we, your family, will help you to achieve everything you wish for and all those loved ones who are no longer with us will forever watch over you. How I have missed their advice, support and company over these years.

Today also marks a year since I concluded my 'Happy Days' - it worked wonders for me. It made me focus on the positive people and things in my life. I realised that more good than bad happens on a daily basis, and those who court negativity have no place in my life. When I scroll back through my posts the thing I've learnt is that it's the simple things that make me happy - my family, my friends, my home. 

Without sounding melodramatic the last three years have changed the way I approach each day. Through all the challenges, pain and tears, I feel now I am truly awake, truly able to see what I need to do to make a difference. The last three years have been the hardest but best years of my life. You inspire me every day and I'm excited for the year ahead. 

So as the sun sets on your last day as a 2 year old, I wish that your 3rd birthday be as beautiful as you are.

Bibi xx