Keeping Faith

I wrote about Joshua’s vision the other day and how it was compromised.  Another one of his abilities that has come and gone over the years, is his speech. We were warned when he was 4 days old that he may never speak and so, when he was a toddler and he began to communicate, we were delighted as we hoped that it was just another false alarm and a skill that was slow to develop but that would come good. Joshua had a limited vocabulary but he had some useful phrases like ‘put some more in’ when he wanted more apple juice or ‘it needs batteries..daddy do it’, when one of his toys broke. So he was able to communicate about the things that were important to him and he made slow progress.

Then when he was 7 years old, he lost that ability and he virtually became mute. We had reduced one anti epileptic drug, in readiness to try another and while he was on minimal medication, he suffered severe seizure activity. We hoped that it was the new drug that was taking away his voice, but when his speech failed to re-emerge, the consultant confirmed that he thought that it was the seizures that had caused further damage to the speech part of his brain and that the loss was permanent. That news was a devastating blow as he had worked so hard to overcome the brain damage from birth and to be able to communicate, that this seemed to be particularly cruel.

Since then, his verbal ability has never returned to the level that it was when he was young, but it has come and gone over the years. Certain drugs seemed to impact on his language more than others and also, when he is exhausted from seizure activity, somehow he does not have the energy to speak. We had an exciting stage a few years ago when he was repeating everything he heard and so seemed to have a wide vocabulary, which was delightful : he was naming everyone in his class at school and using all sorts of words for the first time. But it seems that communicating takes up a large amount of brain power and so he cannot sustain talking  when he is mastering other skills. At the moment, his focus is on physical movement : he is walking so far, is throwing balls well and is kicking hard , so that seems to be pre-occupying his mind at the expense of too much language.

Most  children achieve a skill and then build upon it ; once they have mastered talking for instance, few, without an injury, lose that skill. But we have had to cope with the cycle of loss of language repeatedly over the years and we have to keep faith that it will return again, with encouragement. Joshua can show his cheeky , sociable personality through his twinkling eyes and through his actions, but his voice is a key way to portray his personality and I love to hear him speak.

 

 

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