Isaac has NEVER made a sound. As in we’ve never heard a cry, a noise, anything. We’ve never heard his attempts at words like his twin brother does (apparently Ethan’s friend at nursery had an ‘inflection’ in his ear).
Isaac was very ill when he was born and was on a ventilator, CPAP or BIPAP for 9 weeks until he had a tracheostomy due to vocal cord palsy and tracheomalacia.
So, Isaac has always been silent. More than anyone apart from my family, I want to hear Isaac speak.
My wish to hear Isaac speak is understandable, but what concerns me is what not having a voice can mean to him in the future. Not only is Isaac faced with not being able to verbalise, but the extent of his cerebral palsy is such that he can’t sign either. He is starting to use a switch activated ‘Big Mac’ but it offers one pre-recorded phrase or word. It can’t verbalise his feelings. In effect my little guy is trapped inside his body, whilst fully understanding of all things around him (he has no significant learning disability).
We are living in times where person centred care is central. The passion to achieve true patient efficacy is a swelling tide. I’m apparently an ‘activated patient’ and or a ‘patient leader’ (I prefer ‘gobby dad’) and it’s amazing what people like me can contribute to and invest in systems that mean so much to us because we have a real life emotional connection to seeing the care in action. On twitter every day I see leadership for principles of consultation, the capturing of views, achieving joint leadership. It genuinely does make me excited to know that as I sit here motivated by ensuring that the lifetime of care that Isaac faces is as good as it can be, there are thousands of HCP’s motivated to meet that challenge.
But, and it’s a bit of a big but, how can Isaac contribute apart than through his gobby dad? He’s only 4 but he’s now of an age where his eyes will tell you exactly what he thinks. Isaac has had over 200 days as an in-patient in 3 hospitals, treated by what will literally be hundreds of nurses and doctors, and has had at least 11 trips to theatre for GA’s and surgeries. For a 4 yr old he’s got a wealth of experience about the NHS, what’s brilliant, what’s a bit ropey and what matters. I talk about the things that I know have made differences to him, but there could be dozens more in that little boy that I can’t yet tap into.
So, the next challenge I think is how do we hear that little voice. There’s ongoing efforts by SLT’s around basis eye pointing and recently he’s had a test of an eye-gaze smart box that could revolutionise his life but this will all unfold in time. For the moment I just hope that my little boy without a voice, and the thousands like him, are heard in conversations about care despite their audible silence. Part of hearing them is using the people who communicate the most with the child to help the processes, but the far, FAR more important part, for me, is the desire of the person wanting to hear the ‘voice’. It’s easy to ignore someone who doesn’t speak, it doesn’t mean they have nothing to say though.