I have described how Joshua has defied the odds with his vision and his hearing, but his ability to talk has been more challenging and variable throughout his life. When he was about one year old, his favourite greeting was ” Hiya” and he used it plenty to anyone who would listen. When he started mainstream nursery and then school, he had some language. He used key phrases appropriately : “Put some more in” when he demanded more apple juice, ” It needs batteries” when his toys stopped working, ” press that button” meant get a move on and ” daddy do it” when he wanted his father to fix something or if he wanted help. I can clearly remember the first time that he spontaneously spoke when, he was in the back seat of the car and I was driving, and out of the blue, he said ” I like dolphins!”. My eyes filled with tears, I parked the car and turned around to tell him how much I liked dolphins too – that was our first conversation. We really thought that we were home and dry in terms of his ability to speak, he could count, name colours and identify animals and he was making progress, his speech was delayed but it was there.
But when he was 7, all that language stopped abruptly and he became mute. We hoped that it was a side-effect of his anti-epileptic drugs but once weaned off that drug and onto another, there was no improvement. His consultant eventually admitted that it was likely that seizure activity had robbed him of his language. If seizures are left uncontrolled, they can damage the brain further and the part of Joshua’s brain that controls his speech, had been under prolonged attack, while we weaned him off one drug and increased its replacement. So it was heart-breaking, his epilepsy was not just agonising to watch and deal with, but it left a permanent scar on Joshua too.
We were heart-broken, as our cheeky, happy boy remained silent and his little phrases and even his funny pronunciation of the number 16 – he used to call it sickaleen – were all just dim and distant memories. With no language, his ability to fit in at mainstream school was in jeopardy. We worried endlessly about how he would cope and how he could get what he wanted and needed, without his own voice or if we were not there to be his interpreter. But without talking, he learnt how to communicate with pointing , gestures and using objects of reference and we resigned ourselves to the likelihood that he would be silent for the rest of his life. I resisted sign language, as I knew that he had been able to converse and I hoped that he would again one day.
But Joshua is a determined battler and over the last few years, he began to imitate at first, copying lots of words that he heard and repeating them endlessly and he would finish lines of favourite stories and songs. It was such a thrill to hear his voice after so long and so it would not matter that he would get stuck on the same phrase which was not always sensible or relevant, such as ” no glasses”, ” no pants” or ” I not poorly”. At present, Joshua’s vocabulary is pretty limited, with ” I like you” and ” thank you” being his mainstay, but relying much more on gestures to get what he wants and needs; But as I say, if you only have two key phrases, what lovely positive ones to have in your repertoire and he uses them to great effect.
More than anything, I would love to have a conversation with Joshua. To find out what he is thinking and how he feels . I am a good talker and listener but our interactions are one-sided. and I would love to share more with him. I know him well enough to intuitively know, in the main, what he wants or is trying to communicate. so perhaps we do not need words. But his life would be easier if he had words to use with the outside world. I still have faith that his vocabulary is locked inside his brain somewhere and at some point in the future, those words may well come back to the surface.When that day comes, we will rejoice and welcome Joshua’s language back with open arms. But in the meantime “thank you”, perhaps it is better to have had something and lost it, rather than never having had it at all.