Parents and carers of children and young people with Special Educational Needs and Disabilities ("SEND") embrace the joys and accept the challenges of raising their families, but sometimes, the weight of caring can become overwhelming. Managing daily demands such as juggling appointments, therapies, and daily care routines can be exhausting. Add to this the emotional toll of witnessing your child or young person's struggles and setbacks and the worry, guilt and anxiety that so frequently accompanies this. All of which is then often exacerbated by the isolation that parents and carers experience due to a lack of understanding and acceptance from wider society.
As if this wasn't enough, SEND parents and carers face the added stress of having to understand and navigate often complex and challenging educational health and social care systems; frequently in tandem. Specialised equipment, therapies not available on the NHS, and adaptations in the home all involve extra costs, a situation often exacerbated by an inability of many parents and carers to work full-time or indeed at all. Many children and young people with SEND also have disrupted sleep patterns, meaning parents and carers experience ongoing sleep deprivation, long beyond the time when they might have expected this to end. And whilst all siblings struggle to get along at times, the dynamics where one or more child has SEND can be particularly fraught, with siblings feeling neglected or struggling to understand their brother or sister’s needs.
As a result parent carers may experience trauma, both in the widely understood sense of a significant traumatic event, and in the less recognised sense of an accumulation of smaller ongoing stressors. Many people, parents and carers included, do not always understand that they are suffering from the effects of trauma; but they are. The seemingly never-ending fight to access services, the need to negotiate different systems of support and redress across multiple systems and organisations, the triggering of traumatic memories by being required to recount personal histories repeatedly, and living all the time with a base-level of stress and uncertainty about your child or young person's future, can and do all trigger trauma.
Given the well documented link between exposure to trauma and poor mental health, it is little wonder that research has found parent carers to be at increased risk of stress, anxiety, distress and depression and that they struggle with difficult emotions such as guilt, helplessness and hopelessness, a sense of loss, envy of other families and exhaustion.
If you recognise yourself in this blog post, know that you are not alone. Often it can be difficult to share how we really feel with those closest to us, but there are other sources of support available such as from Affinity Hub. Give yourself permission to experience the full gamut of emtions, incluidng sadness, fear and exhaustion, and accept that it's okay to not be okay.
SEND Advocacy can also provide advice and assitance to help you navigate the SEND system successfully and secure the educational support your child or young person requires. If you need someone in your corner to help you secure the education your child or young person deserves, contact us today.
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