Joshua has always been behind with his language and the epilepsy nurse has explained that his mind will be so clouded with electricity, that t would distract him from speaking. As a baby, Joshua would shout ‘hiya’ while going round the supermarket and it always made fellow shoppers smile. At nursery school, Joshua was able to speak enough to make himself understood but at 4 years old, he began to suffer enough with seizures that we decided to medicate, so that is ten years ago now.
Joshua was speaking in short sentences : ‘Put some more in’ when he wanted more apple juice in his cup , ‘Daddy do it..it needs batteries’ when his toys were broken and ‘go outside, in the garden’ were phrases that I can recall now. But gradually the seizures got worse and they took away his language.There was a crisis point when he was 7/8, when we were withdrawing one drug ready to introduce a new one and his seizures got much worse and virtually overnight, he became mute. We had hoped beyond all hope that Joshua’s silence was drug-related and that once the medication was resolved, that his langauge would return.
But after several months of disappointment, the doctor told us that it was probably not down to medication, rather Joshua’s constant fitting meant that he had suffered further permanent brain damage, perhaps to the language part of his brain. We were warned not to expect any recovery but to adapt to his silence. This was devastating news as Joshua was clearly such a sociable boy and it seemed that this was a further erosion of his personality. At the special school now, they began to try t teach his sign language and I ,reluctantly, went on a beginners sign language course, which in fact I loved and treated like learning another new language.
But I am not aware of Joshua ever using any sign language, rather he has found his own ways of making himself understood and gradually odd words have returned, making me hope that more is in there if we can just settle the epileptic activity in his brain, so that he can get the words out. One of the potential benefits of last year’s hemispherectomy was that if we could reduce hs seizures, then hopefully he wold have a clearer head, enabling him to speak. I was optimistic when he first came home after surgery, as he seemed to be much more alert to our conversations and even attempting to join in : I can recall me asking a visiting friend if she was really going to move house and Joshua began to ‘moooo!’ as his attempt at joining in.
His language has improved slightly but we are still only repeating single words, no sentences have returned, but he can at least ask for a ‘bath’ or ‘juice’. He can name his parents ‘mummy’ and ‘your daddy’ and will occasionally treat staff at school to rare repetition of their names., but often the more they ask him to say a name, the less likely he is to use it, in his contrary way. Whereas yesterday, when there were no expectations on him to speak, he quietly repeated ‘Joe’ for the first time about a friend’s son that we had been naming. Joshua is full of surprises and I still have real faith that, if only we could somehow rid his brain of electricity, that his personality would come bursting out!