As families of children and young people with SEND, we are on a journey without a known destination. The road travelled can be rougher than that experienced by other families, and we can feel as if we are alone in the wilderness without a map to guide us safely onwards.
Yet we are expected to keep marching on, indeed we have little choice but to keep going once more unto the breach.
Along the way, we pick up more information, gather evidence of which route to take, and learn – often by trial and error – how to avoid the pitfalls and slippery slopes back onto the path we started on.
We begin that shift from being those asking, to those telling. We start to see the ‘authorities’ who we believed would be our strongest supporters as gatekeepers who are not always so willing to unlock gates.
Our SEND children’s transitions are more involved and take more planning - from one member of staff to another, from one class to the next, and from placement to a new placement. All are more complex than for those without SEND and involve more parental and family involvement. The potential for conflict can be high, due to the complexities of needs and lived experience of poor support. In addition to this, ‘every transition begins with an ending’ It’s a time of increased emotional impact to all involved. Letting go of what we know – even if it is not working - and trusting in the next step can be hard.
With each transition, as our children become young people and adults, we have to let go a little and trust a little more. This can be extremely difficult; our children and young people can miss so many milestones and rites of passage as they get older. We can feel both happiness that we have accomplished so much, yet such sadness due to the many bridges they still have had to cross to get here.
Many parents have quietly mentioned that they have mixed emotions that they struggle to discuss with those who ‘just wouldn’t get it’. When they discover that this emotional response is valid and recognised, the relief from validation is huge.
The word choice could be better; however, the term is ‘Chronic Sorrow’. It is experienced cyclically as each next event causes us to relive the previous. Applications for EHCP, Annual Review, Appeal, Placement, Exams, Post 16, onwards. If any of these past events caused heightened emotions, sadness, or anxiety these often resurface at the next transition. They can surface when friends and family discuss their own children’s achievements and life goals that we know our children will struggle to achieve. We congratulate our friends, but inside we have a feeling akin to grief for the life we would have wished for our children.
This is a natural response to lived experiences where we have had to take steps we have not been trained to take, did not expect to have to face and have had to learn along the way. Many parents have expressed guilt because they experience these feelings and choose not to share this with anyone.
Sharing an emotional response is important, and we must all come together and show compassion, help to identify the triggers in ourselves for these emotions and to help others with acceptance that this is valid and natural, and not be judgemental. This is not a pathological sorrow, it’s a natural sorrow. This is not about us and our relationship with our children and young people. This is not us ‘wishing our children were different’, our beautiful, amazing children and young people are loved beyond measure, without question. This emotional response is from outside factors, the fights and anxieties we face each day to ensure our children and young people reach their own individual potential, and all the unknowns.
We are allowed to feel this, we do not have to be superhuman, just human. Talk to each other, no judgements, no top trumps of who copes better. We are all getting by the best we can, but finding your Tribe of those who understand is so important. This is what we do on our Facebook group, support each other with care and compassion. Together we are stronger.
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