by Zoe Black age 42, Manchester in England
I am Mum of 3- Ewan (13), Hope (11) and Joseph (6). The latter is a conundrum child. A family member recently described him as a kitten who turns into a tiger- this is a great description of how quickly his mood can change. He is under assessment for double incontinence, Autism and ADHD. This sadly affects his attendance at school as they cannot cope with his toiletting needs and he is anxious about appearing different.
I have had health challenges the whole of my life from asthma as a child but my struggles were often missed as my energy levels and the extend of my breathing struggles didn’t align.
I’ve had fractures and ligament tears that were overlooked because my pain and my mobility didn’t match up. I’ve had sepsis that doctors tried to dismiss as “women’s problems”. I have nearly collapsed on the way to A&E as the intensive care nurses I was working with did not realise I was having an asthma attack so let me walk from the unit to A&E alone. I have a list of diagnosis longer than my arm which includes asthma, eczema, allergies, acid reflux, ADHD and hypermobile Ehlers-Danlos Syndrome. Because of my hypermobility- aka, my sore and bendy body, I have had problems with my feet all through my adult life.
Despite working “in the system” as a children's nurse, I’ve been on quite the journey battling to get the needs of our Tiger understood and supported. Like me, he’s fallen between huge cracks in service provision and we’ve found ourselves completely wedged. Despite being empowered parents in professional roles, we‘ve struggled to speak in a way that is heard.
I’ve learnt about NHS service gatekeepers and the gap between medical and mental health services; I’ve learnt how the NHS operates in silos which neglect the holistic nature of body and mind health; I’ve experienced the good, bad and ugly in all public services; I’ve seen how the systems just aren’t designed for family’s like ours; I’ve learnt about inefficiencies, delay tactics and ignorance; I’ve learnt about parent-blame and system generated trauma; I’ve learnt about how lonely it is to have a child whose needs are too great for mainstream but [supposedly] not great enough for the SEND community; I’ve learnt about how to live with my own challenges whilst battling for my children.
As a family we don’t fit neatly into boxes. Our bodies and our brains are different. That’s what led me to connect with SEDSConnective. There’s not always strength in my body but there is strength in journeying with others who face similar challenges. If my personal or professional experiences can help others in any way- be that information, empathy or humour- then I am glad to share!
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