My life as a Butterfly

Emerging butterflies

As I take time to reflect upon completing my first year in my new (employed) role of teaching children with Profound and Multiple Learning Disabilities (#PMLD) I realise what a hugely significant and personal journey it has been for me. In addition to being the Founder of @JollyJosh and volunteering my time to manage the #charity, I also work part time at the local special school, @SpringsideSchool #Rochdale.

I took this career path after 13 years of working in mainstream education as I wanted to gain an insight into what Joshua’s education would have looked like, had he have survived to be school age.

Firstly, it has been a steep but enjoyable learning curve. All of our learners differ, they are after all individuals and have unique personalities in addition to their differing complex and medical needs. Working alongside outside agencies has allowed me to learn new skills which promote the #holistic wellbeing of our children with Special Educational Needs #SEND. For example, we consider the vital importance of #Physiotherapy, #SpeechandLanguageTherapy, #OccupationalTherapy, #Audiology, #Ophthalmology, #PaediatricConsultants, #CommunityNurses, #Dietetics, etc., and aim to apply the advice and information which we are given to ensure that the needs of our #ChildrenwithSEND are met to our best ability.

As a parent of a child with #ComplexNeeds and having experienced the ‘journey’ of nursing my own child on the #PalliativePathway, I value #ParentVoice #CarersVoice – in my view they are the experts when it comes to their child.

Luckily, I have had the pleasure of working alongside the most incredible team this year –their high standards, knowledge; experience and passion have filled me with warmth and hope. I teach in ‘Butterflies’ class; we are a large class, our learners all have PMLD and Joshua would have been in this class had he have attended school. Our team have been active Butterflies, each member, whether Management, Teacher, Teaching Assistant or Personal Care Assistant have taken me #undertheirwing, they have taught me so much! Witnessing the care and love that has been shown to our learners does make me emotional; there is no hesitation when stating that I would have been extremely thrilled for Joshua to have been a Butterfly! The eagerness to upskill, develop and continually learn is obviously a personal passion of mine as I want our learners to experience the world around them to the highest of standards as it is what I would have expected for my son Josh, though these very traits are displayed by every member of our team. They all seek to #RaisetheBar for our #SensoryBeings (this term was originated by @JoannaGrace, the learners in Butterfly’s class are #SensoryBeings rather than #LinguisticBeings), promoting the rights of our learners.

Saying ‘Thank You’ to the Butterfly team does not seem enough, they will never really know just how important this year has been for me in my personal journey, to know that Joshua would have been loved and cared for at school provides such comfort. We will never achieve perfection because there is always room for improvement but we can certainly aim for it! We aim to achieve this via #communication, striving to build close relationships with family and outside agencies to be a #TeamAroundTheChild. I thank the Butterfly team for ‘teaching me how to fly,’ you have supported me every step of the way this year, both professionally and personally and I am extremely grateful!

I recently began to consider the butterfly, the more thought I gave to it, the more it symbolised for me. The butterfly represents the learners in our class, it represents Joshua too. Those with PMLD are #EmergingFromTheDarkness, they are #SensoryBeings and with the right support and opportunities they are able to ‘fly’ and ‘soar’ as butterflies do to experience the world around them.

The Butterfly also represents me, it is proof that you can experience a great deal of darkness and use it to make positive change. For me, this #PositiveChange was via #JollyJosh, the #Rochdale #Charity in memory of my son. I had to #EmergeFromTheDarkness. The ‘darkness’ for me consists of various factors, #ChildwithSEND, #ChildDisability, #ChildrensHospital, #ChildrensHospice, #isolation, #carer, #anxiety, #childLoss, #childBereavement, #counselling – the list is endless.

The butterfly emerges from the darkness of its cocoon; it has changed. I am in the darkness of #ChildBereavement; I am changed. Yet, there are moments, moments when I can #EmergeFromTheDarkness to make #PositiveChange. I am not saying that we should not visit our ‘dark places’, of course our minds need us to connect with our anxieties, to face our fears and haunts, but what I am suggesting is that it is possible for us to use such emotions to promote change, as I have and intend to continue to do.

The Butterfly takes time to emerge. I’m afraid I will never believe in the phrase ‘time is a healer’, time won’t heal the bereaved parent; I feel it actually enhances the pain as we miss the memories that we never created as time passes. Though, we should consider that time may help us to create change as in the life cycle of the butterfly.

Almost two years on from Joshua’s passing, I have started to face some of the causes of my Post Traumatic Stress Disorder #PTSD. In doing so, I have a long journey ahead, which may or may not be revealed publicly (for reasons which I wish to keep personal at present). As time passes I intend to create more positive change, just like the butterfly. Of course, this cannot be achieved without those who support me, the Butterfly class and team, @Springside and our @JollyJosh supporters.

Thank you all for a very special year @Springside

With extra special thanks to my friend, co-teacher, mentor and now manager Becky Drury and of course Melody Fierro, our extremely supportive headteacher.

x

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