I’m standing at a cliff edge crying out for help for my child.
My voice echoes back to me in the chill and darkness of the valley ahead.
Has anyone been here before?
Can anyone help?
A tap on my shoulder from a speech therapist.
A slither of hope in an otherwise wilderness.
‘Tell me about your child.’ So I do; readily, enthusiastically because, after all, it’s my specialist subject.
She hums and haws.
Will she leave me back at that cliff edge again or bring me into safety.
She offers me little really. Some visuals posted out to me to help me with my nonverbal child.
No working with the child.
No courses available at present.
Like a knife wound to an already injured animal.
Powerless to fight, alone, frightened.
The word echoes on in the valley. Left alone again.
A pull on my clothing. Dare I turn around? Is it possible someone else may be there? Could this be the help I need so urgently, so desperately for my child? ‘Tell me about your child’. With tears running down my face, my heart beating fast, the fear evident with every word I utter I tell 5rm everything like my life depends on it. The paediatrician listens, refers on, moves on, or retires and we never seem to see her again. It’s a fight for another appointment. Months past, years past until I realise what has happened:
Like they are washing their hands of my child. Nothing more they can do, apparently. Hope disappeared. Back at the cliff point once again.
A whisper of my name. Hospital clinics this time. Neurology, medical paediatricians, ENT, eye clinics...in the end we’re just a number. In, out, maybe back again another time, maybe not. They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’ It’s another name for do nothing and hope for the best. Some doctors we see more than once but not many. So much repeating of our story, so many different faces. One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:
Like taking the trash out for the binmen because you have no more use for it. Like taking your old clothes to charity hoping someone else will one day see them and think they are of value. Either way you are no longer wanted. Off you go please, but don’t hurry back.
My own voice echoes back like it’s haunting me. My child has aged, yet I am still pushing them in a wheelchair, progress is slow, my disabled child morphing slowly through the system to an almost disabled adult. Every time I passed go my child collected another diagnosis.
Did anyone really help? Oh, people referred on, people send out forms and ticked boxes but it never took long to be alone again.
Services started, services ended. Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.
Reasons given ranged from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources. Rarely was it actually due to no longer needing the service.
I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness. Oh, there once were a few tugs, a dull whisper, a few taps on my shoulders...but they are all long gone now.
I scream out: ‘why, where is everyone? Please help me! Why did you all discharge?’
The echo comes back to me in the valley. Discharge.
Has anyone been here too?
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