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. 

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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WE will keep your head above water...

I came across this quote today and it instantly rang a chord. I've mentioned before that I'm part of a fab little group for parents of children with additional needs/disabilities. We have become a tight knit group of warriors in this dog eat dog world of SEND. For all of us this is a new experience and one that is taking us varying times to come to terms with. They are my comrades on this journey and I thank my lucky stars to call them friends. 

One of our members though is struggling...in fact that word doesn't do it justice. She's sad, hurting and unable at this point to remedy it. We all feel the depth of her anguish and, in truth, we are all in pain for her. She has just received a diagnosis and instead of it opening doors, as she had hoped, they seem to be slamming in her face at every turn. Support doesn't seem readily available & now she is left in fear. I'm not using that word to be melodramatic - imagine not knowing how best to support your child, being bombarded by daily anxieties about what the future holds, knowing that your life has changed irrevocably and there is nothing you can do to change course. 

Witnessing this has been like turning the clock back two years ago...I feel like I'm watching myself, desperately trying to tread water while gasping for breath. Although I can't know how she is feeling, I empathise. I recognise that sudden loss of control, the loss of carefree, the loss of who you used to be. You are reborn into a new way of thinking and existing. You're expected to learn quickly - every abbreviation, term, strategy sounds like a foreign language and you can often feel overwhelmed or on the back foot. The pain that she is in right now is palpable - it is almost radiating out of her every pore. We all remember those first brutal months after diagnosis & although we can encourage, reassure and advise that things will improve...we can't promise anything. 

As I read that quote today, from a poet I adore for her painful yet beautiful lines, it made me realise that all these wonderful ladies that I've met consistently put an arm round one another - physically or virtually. We can help our friend try to keep her head above water by listening, caring & giving her our time. One day, she will be doing the same for others & these darker days will be locked away in her memories. I'm sure that she cannot imagine that brighter days are ahead for her but they are...the challenges, the despondent moments will still happen but her resolve will be greater. 

Offering kindness to another is one of the most beautiful things you can do. Having a group of ladies who deliver it so unconditionally, when their own lives are complex, is a truly humbling thing. Knowing these women has altered the path my life has taken &, although we have all lost a part of who we used to be, we can carry one another through our sadder moments & cheer each other on through our better days. Right now we all want to keep our lovely friend afloat and offer her hope that all is not lost...she may not recognise who she is today but as the tide ebbs & flows, she will discover that she can not only keep her head above water but she can do so with a smile on her face. 

Bibi xx

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Today is Not the Day...why I'm not ready to tell my daughters.

I'm starting this post with a little dose of trepidation...I'm usually not one to worry about people's opinions but this subject makes me feel somewhat uneasy and I'll explain why. One of the questions I frequently struggle with is when and how I will discuss my daughter's diagnosis with her and her sibling. Yes, two years in and I still haven't talked about it with my eldest. She understands that her little sister was unwell during her first year but since then she has thrived in lots of ways, so it has never felt necessary. When we discovered that our daughter had a genetic deletion, I remember thinking how much better life would have been if we didn't know. How we would have allowed her to develop at her pace, without the constant scrutiny, notes and discussions. Whenever I start to go down this route, I remind myself how immensely beneficial the diagnosis has actually been to her and us...it's given us a head start - we've been able to work on targets, focus our minds on what we need and have to do to open up all those neural-pathways. This intervention has worked and I'm grateful for it...but it doesn't stop me from querying the what ifs and if onlys. 

Without doubt, the knowledge has had two major effects - positive in the sense that I'm aware of how to support her and negative in the sense that it's easy to 'blame' the condition. I have a tendency to fixate on the characteristic traits e.g. being over friendly or a 'cocktail personality', as it's so eloquently described. Over recent months I have obsessed about this and worried intensely about its potential. I've allowed myself look too far ahead, that hazy future none of us have control over but we desperately want to organise and manage. It's taken me to a whole host of scenarios that leave me in a cold sweat. A few of my lovely friends of late have recognised that I'm worrying and have reassured me...they've reminded me that plenty of 2 year olds wave and say hi to people...that my incessant stopping of this is almost squashing her vivacious personality, something she inherits from my husband's side of the family, not necessarily just from her deletion. She certainly doesn't say hello to everyone and can become very shy if someone talks to her - all totally appropriate for her age; but I've allowed her label dominate my reaction to this. Obviously, my intention is to keep her safe and to teach her about boundaries; but my knowledge has affected how I've responded to her behaviour. 

My fear is that by telling Bean, by telling Beebs (her sister), they might respond in the same way that I have. I might limit their expectations of what my gorgeous girl is capable of. Will they read this long list of traits and allow it colour every decision they make? Will it propel them to live in fear? Will it make my daughter see herself as a label, rather than an individual? Of course, these are all unanswerable but they can become tormenting if I allow.  

The truth is, at some point we will have to have that conversation. We will have to tell her about her condition, as there can be health risks attached to it and consequences if she goes on to marry or want a family. I suppose what I'm trying to say is, I want her to have a life unburdened by a diagnosis. I want her to live without the worry that 'different' can bring...but that's just not possible. I don't want her sister to be sad, to suffer guilt (something I know many siblings can feel), to feel responsible for anyone but herself. These, though, are the cards that we have been dealt and we have to face them as a family - us against the world. I would love to keep it a secret to allow her to just live life like everyone else but I suspect that this is unrealistic and would be unfair to both my girls. In fact, they might not react like me - they might embrace this knowledge and champion it, something I want to do too. I'm sure, they would probably teach me the right way to digest the emotions and concerns.

Diagnosis doesn't stop when the doctor utters the words to a parent...it can be a torrid journey that shows no mercy to its traveller. Every step forces us to make a new decision, to manage a situation/emotion, to find the best way to cope. We won't always get it right, in fact we often get it wrong. Ultimately, my main reason for not telling either of my girls yet is that I want them to live a life beyond limitations. I want them to uncover their strengths and weaknesses first, rather than be presented with a list of who you are or, rather, who you might become. Life's joy is discovery, freedom and evolving into an individual...both of my daughter's deserve that. So, for now, I'm going to allow them the peace and quiet to do just that...when we need to we can talk, explain and work through it all together... but I don't believe that day is today. For the time being, I want them just to enjoy the here and now...something I'm learning to do too. 

Bibi xx

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Undiagnosed Children’s Day - 29 April 2016

Today is the 4th #undiagnosedchildrensday. Often the word SWAN (Syndromes Without A Name) is used - it is essentially an umbrella term for a child or young adult who is believed to have a genetic condition or rather an undiagnosed genetic condition. This can impact on a child and their family in enormous ways. There is no designated medical path to follow - no exact treatment plan. Sometimes it can involve guess work and fighting fires, instead of a preemptive strategy. 

For anyone who has read a few of my posts, you will know by now that diagnosis came relatively quickly for my daughter. She had a very precise symptom, which lead her consultant to carry out a FISH test (I’ve attached a link as I wouldn't dare to attempt to give an exact translation of this!). They were able to administer this test to look at a specific chromosome - number 7. Within 8 weeks we had a diagnosis and a plan. I have frequently said that it is easy to become blasé about having a label, a name for why your child is developing in a particular manner. As time has passed I have started to fully appreciate what it means to ‘know’, to be able to map out and consider the future. To know the organs of the body that need to be monitored or observed. The methods that might unlock or support your child to achieve. 

When my lovely girl was diagnosed we had genetic counselling (one of the most fascinating meetings of my life). This incredible man enlightened us on what we had in store, what we would need to be aware of but more than that he offered us hope and support for the journey we were beginning. At the end of this session he handed me a booklet, which contained around 50 pages. This outlined every stage of my daughter’s life and what medical checks would need to be done. I can remember casually putting this in my bag and walking out. I had no real appreciation at that point how valuable & fortunate we were to be carrying this paperwork. I feel completely ashamed writing that today but I do it to make people realise how grateful they should feel to have a diagnosis, even when it hurts to your core. 

I know a number of children & young adults who have yet to find a diagnosis. I have witnessed first hand the struggles, worries and apprehension this can cause. The not knowing must be deeply painful but yet they continue to put one foot in front of the other - determined to give their all to their child. Studies like the 100,000 Genomes Project are working towards finding diagnosis and treatments plans for those who need them. I have met one of the Drs involved in this and he is simply the most dynamic man I have ever met - he is passionate about discovery and changing the lives of families. The support he offered my family post diagnosis will never be forgotten. 

So, this is my plea to you. Please support #undiagnosedchildrensday - retweet, Facebook, tell your loved ones, tell everyone about the importance of it. For the friends I know who live this every day, life without diagnosis is complicated and unforgiving at times, but their child is just as loved, valued and significant as your own. 

Bibi xx

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You can make a difference - if you would like to support SWAN then please find the details below:

“If you would like to make a one off donation you can also do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070.” from https://undiagnosed.org.uk/get-involved/

I am Alison...The A Word (from my perspective)

So, full disclosure...my child doesn't have an autism diagnosis. She has a genetic deletion, which presents a range of distinct traits with strengths & weaknesses. Hence why I've added the ‘my perspective’ to the title of this post. I cannot and do not claim to understand the experience of raising a child with autism. Despite this, ‘The A Word’ resonated with my own life. Alison often felt like gazing at my own reflection. Seeing her attempting to silence the use of the 'label', being overly assertive (pushy!) with professionals, fearing the stigma, grasping onto breakthrough moments only to be crushed by reality once again, scrambling for support to 'unlock' your child to enable them to access life, like everyone else. When I say these words I am not speaking on behalf of anyone else - I'm not suggesting that everyone feels this way, but I'll admit that I did, or, maybe more accurately, that I do.

Many of the episodes rang true for me - I kept catching glimpses of myself on screen and this made me shudder. I recognised Alison's plight - yearning both intervention but the need for privacy. The final episode felt like a culmination of these emotions. Witnessing Alison being dragged to honesty was acutely painful to watch...particularly as I feel I'm edging ever closer to that epiphany or fate. Alison was pressed to describe her son - to expand on his personality (essentially to reveal his autism)...this brought me to tears. Observing Alison stumbling over synonyms & euphemisms spoke volumes to me. Right there I was watching myself...nearly two years post diagnosis and yet saying the words, the label...hurts. Each solitary letter causes me pain, physical pain. Diagnosis, labels, your child being different ("but not less") is an enormous thing to digest. It's a strange paradox that I find myself in - I envy people's openness. Those who fight, campaign and champion their child's condition. I want to be those people but I’m not, yet. 

The truth is I have told my parents, my sister and a tiny number of very close trusted friends. When people have questioned why my daughter was in hospital, if she is 'better now', I'm ashamed to say that I've twisted the truth. I dress this up as my way of protecting her - I frequently hear myself saying "it's her diagnosis", that I want to maintain her privacy and dignity. Part of me believes this, the other part thinks I'm just not ready to face the enormity of my daughter's future and her sister's too. Acceptance is a marathon, not a sprint. It is a path laden with broken glass, each step can cut and scar. Eventually the road clears and you begin to find beauty in it, but that doesn't necessarily mean you have crossed the finish line. The irony is, I embrace my daughter’s diagnosis - I have no desire to take it away, she is who she is because of those words I struggle to utter. I do though have days where I wish I had a magic wand to ensure she has a happy and fulfilling life.

Alison wasn't always likeable - she could be defensive, defiant & often desperate…desperately in pain, desperate to awaken the child she thought she had and desperate for a professional to empower her and her son. She, at times, neglected to notice her eldest child. The truth is that this can and does happen - it makes you feel terribly guilty but when you have enormous complications, you don't always get it right.

'The A Word' was, just like my own situation, perfectly imperfect and that for me was its beauty. It touched upon painful and poignant issues, revealing the pathos felt by parents coming to terms with a diagnosis - from denial to the first steps in acceptance. The word ‘grief’ was used…”It feels like grief to me” said Dad, Paul. It can, for some, feel like a bereavement. They shone a light on the stigma sometimes felt by individuals with additional needs - the scenes where Ralph, a young man with DS, was suspected of doing something untoward. These moments made me sob - the injustice, victimisation and down right ignorant attitude of some of the characters made me want to scream, but I am so glad that Bowker showed this, because it can and does happen. 

For me, personally, I thought it was a triumph - it opened the door for people to see that parenthood isn't always simple, it can be a lifelong challenge that doesn't always repay you in love and kisses; remember too, for many of us, it won't always end with children flying the nest and our freedom being regained. It conveyed the intense pain, joy and fight felt by Mums and Dads. Bowker revealed a world that still needs fine tuning to fully welcome and accept our differences. If it engaged people in conversation, if it makes someone think twice before they sneer at a parent in the supermarket who is dealing with a meltdown, if it encourages someone to offer a kind word or take the time to be a little more understanding, then it has done a truly beautiful thing. I hope it has achieved this. 

Finally…I want to end with an Edgar Allan Poe quote from ‘To My Mother’. Alison's actions were not always easy to rationalise but were those of a Mum learning to navigate this new ship, gripping on for dear life. I share her heartache, anxiety, determination and imperfections because I am Alison and I wonder how many other Mums felt the same:

“Because I feel that, in the Heavens above, 

The angels, whispering to one another,

Can find, among their burning terms of love,

None so devotional as that of a ‘Mother’”

Bibi xx

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NOTE: I have written this from my perspective of a mother, hence the quote. However, I know that there are a wealth of Dads who are fighting for their children day in day out. I know that because my husband is one of them. I truly believe a father is equally as devoted to championing and advocating for his child xx

Be Brave

In February last year my youngest and I were invited to join a Child Development Group…it was sold to me as a ‘Family Support Group’ and, if I'm honest, the prospect made me feel uneasy. I couldn't visualise what this group would look like - would we be expected to bare our souls? to share the finer details of our children’s woes? I attended nervously…I almost backed out at the last minute but decided to brave it and welcome the opportunity.

What I didn't realise when I opened the door is how much it would transform my life, let alone the progress my girl would make. I walked into a preschool setting but one that was totally unique. Instead of the hustle and bustle, noise and chaos of most groups, this was an educational play session that catered for a select group of children and families. We were all, despite our varying diagnosis, in the same boat. There were no judgements, no insensitive questions, no boasting about possessing a genius child…rather, it was etched on the face of every parent that we were here to support our children, to give them a safer and more secure environment to work within. What a relief! 

Each Mum was at different stages of the diagnosis process: some were seasoned pros, a few were in the initial stages of assessment and one or two were consumed with a sadness that was palpable. As each week passed we got to know one another more intimately. We shared our stories, gave advice where we could, we laughed, complained...but, above all, we supported one another. I have learnt so much from each and every one of these women…I've realised that, more often than not, Mums are at the coalface of these groups. My husband works. A lot. I'm fortunate that he does but the end result is that I attend all these sessions or appointments alone, just like most of the women in this group. You have to staple on your brave face, breathe in the fear you feel when you attend a meeting, swallow the emotion as it wells up each time you have to express information about your child’s condition, strengths or weaknesses. It's all consuming and takes courage - sheer grit and determination. Every woman I have met at this group is endowed with an inner strength that they probably didn't know existed, until they were faced with these challenges. 

I'm a big believer that the right support is essential - it cannot simply come from your family and close friends. Whether it is portage, local services provided by your council/borough, charities…wherever it is, you have to tap into it. The group that we attend has given our children the skills, resources, time and care to find successes. They have given us the tools to support, engage and manage our children. Most of all though, it has allowed us to create a network of women who can lift one another up, strive for each other and cheer each other on. We can sob openly if we are having a bad day and we can laugh heartily when the better days are upon us. 

Many of us have overcome the grief now, whereas others are in the midst of it…some days you can almost see the ‘black dog’ walking beside them, nuzzling their legs and demanding their attention. This has made for painful viewing - anyone who can empathise with this experience knows that this sorrow, although ever present, minimises and the gloomy fog clears so you can begin to see the horizon again. When I see some of my now dear friends so consumed by this sadness, I want to do anything I can to reassure them that the diagnosis is a start pointing, not a shackle. It ‘should’ open doors and it ‘should’ promote the start of a new journey (I use should because I know we have been lucky - not everyone is). It won't always be a smooth track but your eyes have been opened to what you need to do and hopefully, with guidance, who can help. 

The advice I would give to any newly diagnosed parent is be brave - channel that heartache into proactivity. Push every ounce of your sadness and anger into seeking out support. When I opened the door to the Child Development Centre I anticipated all the negatives, I was so wrong. What a mistake if would've been if I had allowed fear take over and stayed home. Being brave leads you to face things head on - we fight for our children to make their life better, we fight to keep ourselves afloat, we fight because we have no other option. I made a decision when my daughter was diagnosed that I could either lay down and die or I could champion her. She is my life’s work now, just like so many of the Mums I have met. 

The group that we have formed now transcends our CDC - we are now a team, a united force working together to support our children, to sustain one another. Starting a simple Facebook group for these ladies is one of the proudest and best things I have ever done. I was nervous suggesting it but I am so grateful I took the plunge and did it. No-one should walk this journey alone. It troubles me to think how many parents might be at home or at work each day feeling abandoned, isolated and trapped. I would urge anyone in this position to reach out. Send a friend a message, explain how you feel. Search your local authority's website for local services. Contact Mencap, Scope, the charity that supports your child's diagnosis. Do whatever it takes to challenge the status quo. There is no shame in feeling sad, there's no shame in asking for help. You can't control the diagnosis but you can absolutely control how you personally deal with it. Above all, be brave and believe that you can do this, because you can. 

Bibi xx

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In a bubble...

One of the overwhelming sensations I've had since my youngest was diagnosed is this sense of being in a bubble, one that's segregated from everyone else and their own perception of the world. I feel totally separate and apart from everyone else. It's not that anyone has done anything wrong or that I think I know better but I simply feel my world is divided from the masses. One of the feelings that often creeps into my mind is 'I wonder what the future holds' - this has so many connotations that it would be impossible for me to articulate where that question can take me. 

Then today, I was confronted with what my future might be. It was like opening a window into possibility...no certainties exist but I'm always intrigued when I see someone else who I would consider 'part of the club'. I stopped into a coffee shop to grab a quick drink to go. As I waited in the queue I noticed a mother and daughter in front of me. I instantly sensed something was different - simply by the body language and how her mother was talking to her. As the girl turned to me it was clear she had DS. I felt an overwhelming sense of connection to this mother and daughter. I wanted to talk to them but that probably would have made me look crazy but I almost wanted to say 'Help! How do I navigate this path to where you are now? How do I make sure my daughter is happy? Safe? Living life?' Obviously I wasn't brave enough to voice all those thoughts but I'm sure if I had the mother probably would've taken pity on me and shared some of her wisdom, or at least I hope she would have done.

As I waited for my coffee I watched them find a table, sit opposite one another and have a conversation. The girl kept her head bowed most of the time - perhaps she was shy, maybe embarrassed or maybe that was simply how she preferred to sit. Her mother got up from the table to use the bathroom and I noticed that this young lady virtually tried to disappear in her seat so people wouldn't look at her. I could've cried. I wanted to tell her to hold her head up with pride - she was a beautiful girl. Lovely long hair, a gorgeous face, definitely not one to vanish from the world. I wondered instantly whether that would be my daughter in the years to come. Whether she too would feel the need to shy away or feel out of place in this very, at times, hostile world. It opened up worries and anxieties that are ever present but rarely shared. 

Coffee in hand & thoughts stowed away, I left that little window behind me. I closed it for the time being but I didn't lock it. The future is the unknown and although I was able to paint words from this simple little scene, there's every chance this young lady was having a quiet day - maybe she didn't want to go for coffee with her mum (she was a teenager after all!), maybe she'd been out with her friends the night before and was feeling delicate or maybe she was having an off day. You see, every moment that you capture and fill in the gaps, can either be accurate or inaccurate. You can chose whether to see the negatives or find the positives. Although this little moment tugged at my own insecurities about the road ahead, I might not have been seeing it clearly. The fog clouds your own thoughts that sometimes you project your own concerns on to others. I might never be able to fully lock away those troubles but I can try to always balance them against what could be. What could be is a mystery but it might be wonderful...wherever our bubble takes us, we will (like the mother and daughter I observed) be there together. 

Bibi xx

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Welcome

Hi...

Last year I completed a challenge called '100 Happy Days'. It was, quite honestly, life changing for me. I needed something to cling to and I found this experience acted like a life raft for me during (& after) some exceptionally difficult times. By writing about one good thing a day, I recognised that despite all the traumas I had endured, my life was still a rich blanket of wonderful things. It almost re-wired my brain and my mindset. It made me focus on the positive, rather than dwell on the negatives. Don't get me wrong...I still love a good moan and complain about insignificant things but I try not to allow it fester for too long. 

As a result of this I decided to start two things. One - a group for myself and parents whose children have additional needs/disabilities, which I did at the end of 2015; and Two - create this blog. I'm not sure exactly what direction this blog will take...my intention is just to write about the things that I see, experience & feel. 

So let me introduce myself...I'm an ex teacher, who is now a full time mum to two gorgeous girls. Being a SAHM was never really my intention but my second daughter put paid to any thought of a return. Since her arrival my life has changed paths...I've had to adapt to a new life, one that absolutely terrified me initially but now I fully embrace & actually feel grateful for it. I'm passionate about supporting children and families with additional needs/disabilities, I actively try to support parents who are going through diagnosis and try to use my knowledge of eduction to help in any way I can. I love books, fashion (even though mine has become seriously lazy), family, friends, music, prosecco, Italy, France, laughing & lots of coffee...in truth I love life, with all its pitfalls and worries. I hope anyone who takes the time to read this will enjoy it. So, welcome to Chromosomes and Coffee...xxx 

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