Just one year that’s all it was to support my daughter as she made the transition from her special school into adult life and the world of work. I put on hold my career and future aspirations and ploughed into a world of learning disabilities, college and training courses. Of course I have been immersed, since Beth was born, in an unknown world of ‘what ifs and can’t dos’ so what could this year possibly throw at me, that I haven’t already experienced.

Well the first thing I learnt, yet again, was never to underestimate Beth and her ability to adapt to new experiences and surroundings. I recall the first morning she attended her new college course. I sat in the car park of the college and I watched as she excitedly waved goodbye, disappearing into the throng of students, who in my eyes were too old and worldly for her. I waited nervously for her to come flying back out. I counted, I prayed, I wrung my hands….nothing she was away.

It only then occurred to me, that for the first time in years here I was driving along listening to my music in my car, with an entire day stretching ahead of me and I had it all to myself (well until 3pm). I felt guilty, I felt unworthy of this time just for me. It wasn’t right I should be doing something constructive… truth? I was in heaven.

Our hope as a family was that Beth would make friends and begin to become more independent. For a while this seemed to be happening, Beth was telling us all the right things and I suppose what we all wanted to hear. About six months in to her college year Beth’s mood began to change, college had thrown up lots of challenges that for the rest of us is just daily life but unfortunately for Beth was quite difficult to process. These included tutors being off ill, substitute cover not turning up, multiple movement between classes and a peer group being much older than Beth. Combine all these factors into a melting pot with someone who has a profound learning disability and has been protected all her life….. the outcome is not a positive one.

Support was sought from college tutors and other personnel however because we did not buy into the ‘one size fits all’ mentality we were not viewed favourably for questioning, challenging or asking what alternatives existed for our daughter. Beth’s mood plummeted, she was always apologising, asking if she was a good girl, was it her fault that she hadn’t made friends, her confidence also spiralled downwards. Old behaviours returned, regressing to childlike phrases and speech and anxiety levels were at an all-time high for everyone.

I was in a pressure cooker, I was a rabbit caught in the headlights. What do I do? Who do I talk to? Who will not judge? Who will listen? Less than a year ago I had a challenging and fulfilling job that I loved, Beth was safe, happy and in a placement she loved. What had I done? I had taken the year to help her grow, now we were both sitting at home with what appeared to be no future and nowhere to turn. The final straw came when I was told in the car park of the college that my daughter was merely seeking attention and the problems were probably stemming from home, oh and to round it off, my daughter was apparently ‘determined to be sad’. Well the truth was, regardless of input from the so-called experts and professionals, Beth didn’t fit what was on offer to her. It wasn’t the right size, shape or colour but it was the only size, shape and colour available. She was clever enough to understand this and try as she might she just didn’t fit and boy did she try, she hated the reality of this.

When you do not conform to societal norms then your options sadly are limited. The stark truth is that when you live in the world of special needs you are often expected to take what is given to you and be ever so thankful and grateful regardless if it fits or not. Beth is in the fortunate position that she has family who will fiercely fight for her rights and be her voice when she needs it but what about those individuals who do not have that resource, do they have to just accept this one size fits all concept? And if so why should they? Parents, teachers, policy makers, government bodies all have a responsibility to widen the opportunities to those individuals like my daughter. The very place that should have offered Beth education and learning for the future let her down. They appear to have a template or model for what works for the masses and if there is a breakdown it must be to do with the individual but never their stringent model.

Now fast forward a year later, Beth is now with a provider that meets her needs, who design courses for the individual, they are dynamic and forward thinking best of all Beth fits’ without even having to try! Their mission is to EQUIP* people who have a learning disability or Autism with the skills to improve their confidence, independence and employability. They have bespoke academies that offer training in a range of subjects to suit individuals. Employment officers are assigned to build relationships with the trainee and offer placements that may long term lead to paid employment. The organisation and its board listen to the parents they value their opinions and ideas. Beth is thriving in this environment, her most recent review stated that she is a happy sociable young lady, willing to please and try any task expected of her she is not and never will be …. ‘determined to be sad.’

I have news for any parent who finds themselves in a similar situation one size does not fit all and be brave to challenge those who try to tell you otherwise. It is ok to speak up, to not accept what has always been the norm. Yes it takes guts to question and petition when it seems that everyone around you is judging you, or making you feel as if you have the biggest chip on your shoulder, but what is the alternative? Do we then just accept mediocrity? Absolutely not! Beth is not average neither are the individuals she represents. So I urge you, as parents, to keep being the voice for your son or daughter and for all those other very special individuals they embody. Be their advocate and take heart that you are most definitely not on your own.

It is suffice to say that my year has now lengthened to early retirement. How could I leave the most important job in the world after the most enjoyable and challenging year of my life?

So here’s to my daughter and to infinity and beyond together.

*Empowerment – Orchardville, Families, Employers and Funders work together to enable all users to achieve goals and aspirations.

Quality – Through creativity and innovation we are committed to providing excellent services to meet the changing needs of all users.

USER – We place the Service User at the centre of everything we do.

Integrity – We place high value on the reliable and honest way we conduct our business and will ensure everyone is treated equally and respectfully.

Passion – At the heart of our team we are passionate to energise, engage and inspire everyone.

Do you ever stand on the outside of situations and just watch what goes on? You detach yourself and observe, gathering your own thoughts, be they happy or sad.

Over the years as a mum to a child with special needs, I have had to develop the art of standing on the sidelines and observing individuals, their reactions to particular situations and how they interact with others. For example, I watch when arrangements are made for outings and events and silently break my heart because more often than not someone is invariable excluded. I am sad to admit that this is usually Beth. I witness the confusion and stinging hurt in Beth’s eyes when she realises, that she isn’t part of the planning and the organised activity. I then observe how the planners over compensate for not extending the invite to everyone. They cite bland reasons for why the outing is unsuitable. Sometimes no reason is given, which is worse, and the event happens. The fun is then captured in a Snapchat or Instagram post and sent globally, so not only is Beth excluded but she is then bombarded with fun filled images.

I silently brace myself then for the constant barrage of questions that I know will follow. The most common being why could I not go Mum? did they not want me mum? So I then try to explain to Beth and offer other alternatives to salve her disappointment and compensate for the stark fact and realisation, that the older she gets the more frequent the exclusion will become. My emotions range from sad to red hot rage, I think in part this is because I have no control over the situations.

Now I fully accept that Beth cannot be included in everything and she herself accepts that life can at times be a little disappointing, this is after all one of life’s lessons. I can say with admiration that Beth copes with exclusion so much better than anyone I know. She is building resilience and is continuing to develop this ever important life skill.

So why do we exclude? Is it out of embarrassment, ignorance or at times selfishness and lack of thought? I could quote legislation on inclusion and human rights but the simple question I have is – Why can’t we embrace differences and celebrate uniqueness?

Beth very rarely leaves anyone out of anything that she does, she always ensures everyone is included, regardless of who they are. Her main aim in life is to help everyone feel happy.
A lovely example of Beth putting this into practice was when she attended junior school. It was sports day and as was normal in our family her dad, sisters and I all planned to be at the edge of the sports field cheering Beth on, in whatever race she was taking part in. (It really was the Beth appreciation society even granny and papa brought their foldup beach chairs and cheered by the side lines.) Beth loved to see us all there, she would introduce us to all her friends and ask us to cheer for them too! The sack race was always a favourite, so Beth was standing along with her peers at the starting line all carefully placed in their sacks, by the teachers and classroom assistants. The horn was sounded and off they went, Beth to be honest was too busy smiling and looking at us, to think of hopping ahead to the finish line however she did look back. We watched as her smile disappeared, and her expression suddenly became filled full of concern, she hesitated and then stopped. We followed her line of gaze and we immediately saw a small boy struggling to move forward in his sack, he had fallen over and was sadly watching as all his class mates were heading towards the finish line. It was then we noticed Beth had dropped her sack, slowly stepped out of it, picked it up and walked back to the boy. Beth called to the other pupils who by this stage were about to celebrate their triumph of successfully finishing the race, they too stopped and ran back to help. Beth had, by this stage, put the boy back into his sack, taken hold of his hand and was beginning to move forward. The other pupils formed a line all holding hands and supporting each other (quite difficult when you have to master the art of keeping hold of the sack too!!) Together they all crossed the finish line, all laughing, smiling and punching the air in victory. Beth told her teachers and us later that she could not leave her friend out and ‘anyway it was better fun us all being together’

We can all learn something from this simple story and from individuals such as Beth who are, to date, the most marginalised and excluded in our society today. I hope it challenges you to search yourselves, your opinions and actions. I hope it encourages you to embrace and respect the differences in life. Let us continue to practice and develop our understanding, empathy and tolerance.
“To be one, to be united is a great thing. But to respect the right to be different is maybe even greater.” Bono

Today is a day to celebrate. It is a day to say thank you to God for walking us through the last 22 years. Many times in the past I have turned away from the well intended and common phrase of how my child is a blessing to us, kindly spoken by people we met; usually by those who had absolutely no comprehension of our situation. Of course we were and continue to be blessed; all new life is a blessing regardless of the circumstances. All three of my girls are a blessing in their own unique ways.

Beth however has taught us something a little different – in times of real fear, we have relied on our faith, we have known the depths of darkness and hopelessness and endless questioning. And then from the depths we have also soared to the heights of joy, in awe and with unbelievable thankfulness, love and happiness. Even now as I write this, I smile at the memories we have made on this journey so far. We have witnessed miracles in the everyday events that many may take for granted.

I believe that God made me a promise 22 years ago and my favourite Psalm 91 reminds me of those promises and builds me up, if at times I flounder (which seems to feel like all the time). I know I could easily wallow in the negatives, I accept life will not be plain sailing for Beth, nor for ourselves but there is no room for cynicism today – there is only an abundance of joy, pride and the most amazing feeling that we must have done something so right in our lives to be blessed with the most amazing beautiful young lady.

Let’s consider those we have around us and celebrate life in all its fullness.

Happy Birthday Beth.

I was asked not so long ago why had I suddenly started blogging – what was it’s purpose and to what end? Like in everything I do I began to think about the question and then think some more. As my intro page states; it is my hope that perhaps other families who are faced with what we were faced with, would be able to relate and find encouragement in my words and experiences. I remember twenty one years ago yearning, at times, for someone or something to come alongside and reassure me it was ok to feel the way I was feeling.

When we finally got Beth home I went into complete overdrive. I was her mum so my sole purpose was to ensure all her needs were met over and beyond anyone’s expectations; those not only of my family but also the entire medical profession. I have come to realise now many years later that the only person I was trying to prove a point to was – Myself.

It seemed our lives and that of Beth’s had become an endless stream of appointments, meetings, medical tests but never a diagnosis. I independently carried out the intensive physiotherapy programme at home with Beth, I monitored feeds 24 hours a day. I spent hours studying her to see if I could reveal some sort of sign, that would shed some light on what was wrong.

So I can remember one morning, Beth was back in hospital due to breathing difficulties. We had only just got her home for a few weeks and my husband and I were once again doing hospital shifts, whilst juggling work and family life. I was leaving Beth’s sisters to school and nursery and as I was standing at the school gate I observed how all the other yummy mummies were leaving their children into the Primary 1 class, the majority of which were avoiding making eye contact with me. No-one knew what to say but they gave me a smile that I interpreted as, oh I heard something was wrong – I don’t know what to say – I am so sorry, thank God it isn’t me in that situation. I know their smiles came from a place of love but I honestly could not bear their pitying expressions.

So what did I do? I came home and went to bed. I climbed in under the duvet and told myself: that’s it, I am opting out, I am not getting up. I didn’t feel anger or sadness, I just felt absolutely nothingness, I wasn’t even interested in praying. In my heading I was telling myself I wasn’t equipped for what life had handed us. My life was ordered?: I had two beautiful girls, a loving and hard working husband, a great Mum and dad, my life was sorted. Now everyone that knows me and knows me well will most likely say that I am a realistic, practical, “tell it as it is” individual. I face problems head on, I do not bury my head in the sand, I see a thing through to the end regardless of the outcome. So this behaviour was totally out of character but I didn’t care. As I lay in bed it suddenly came into my head: well you can lie here forever but life is still going to go on around you, whether you want it to or not. The sun will still rise and set. Beth will still be your Beth, so you have a choice – do what you do best by getting on with it, or, hide from it. So I got up!

Was I going mad? Probably. But then maybe there is a little bit of madness in all of us.

My family eventually managed to sit me down and suggest that it was time to share and let us help with the physio, the feeding and the worrying. You can’t do it all on your own, as a Mum you have nothing to prove to us. Open up and let other people help. So I did!

I look back now and realise with such clarity that to accept support and allow those, who love you, to help, is not an admission of failure, it is an acknowledgement of solidarity and hope. So for all the mums out there and not just mums of special needs; Don’t do it alone, let your barriers down and allow those who love you to help you.

It has taken me a while to start writing this blog but I thought I would know when it was the right time to put my thoughts into words.

So perhaps a bit of background information would be a good place to start. I am a fifty something married mother of three beautiful girls, who are all following their own pathways in life in their own unique ways.

My youngest daughter Beth is perhaps following the road less travelled when compared to her two older sisters. Twenty-one years ago after having a very normal and healthy pregnancy I gave birth to a very poorly baby daughter, who got into distress during delivery and ended up in the Special care baby unit due to breathing difficulties. I suppose that is where our journey began; a long and arduous road of not knowing what was wrong with Beth and being completely in the dark, as to what issues she was experiencing. When we were permitted by the hospital staff to see Beth, she was in an incubator asleep and that is how she remained for the next three weeks. She never woke for feeds and we never heard her cry. I have the clearest memory of talking to her softly and asking her to open her eyes and look at mummy, so I could say hello. Inside I was gripped with fear and such sadness.

What if she never opened her eyes?

We met with various consultants who rhymed off a series of health issues and potential problems. Beth was floppy, she was suffering from hypotonia, stridor, poor breathing.

We kept asking the question, why? We asked when she would awaken? In the absence of answers we were instead presented with a photo of Beth taken by the nurses at 3 days old, just in case she never woke up.

A tube fed her but I argued that she would never wake up if she was never allowed to feel hungry. They just kept opening the tube every four hours and pouring milk down her. My babies were breast-fed and never were bottle fed babies, so I pushed for the tube to be removed. I think this was the start of me following my gut instincts where Beth was concerned.

So we were given a weekend to feed Beth ourselves we had to reach a certain amount of millilitres of milk every day. My husband, my Mum and I did everything within our power to ensure that every millilitre of milk disappeared and it’s suffice to admit that Beth didn’t always finish the milk but the bottle was certainly always empty when returned to the sister of the ward!!

Slowly Beth began to open her eyes we heard the faintest of cries and we were finally able to introduce ourselves to our beautiful daughter who was ever so floppy and very very sleepy.

We named Our daughter Elizabeth (Beth) which means promise or oath of God and I knew back then, that God had promised to walk us through the journey that lay ahead of my family and I. How did I know? I felt it – it’s as simple as that.

We got Beth home about three weeks later. Her sisters were over the moon their baby sister, Beth, was coming home at last. We however still had no diagnosis as to why Beth presented with the problems that she did. We had appointments with more specialists and geneticists everything drew a blank.

We did, however, embark upon an intensive programme of physiotherapy. We had endless appointments with so called experts examining my beautiful baby and all asking the same questions. We had brain scans, muscle biopsies and blood tests over and over again.

I visited the maternity unit again asked for my notes, to see if they could shed any light on what was wrong.

I looked inward and asked myself what did I do wrong? Did I eat something or not eat healthily enough? Did I drink something? What was wrong with my lifestyle? I spent hours on the internet looking for some sort of solace or anything that would answer my endless questions. To my shame I told myself this sort of thing does not happen to me, this happened to other people but definitely not me. What did the future hold for us as a family, more importantly what did the future hold for Beth.