Love & Understanding

I am often asked ‘Does he understand it is Christmas?’ or ‘Is he looking forward to his birthday?’ for example, as people try to get a measure of Joshua’s level of understanding. The truth is we do not really know just how much he understands, but he does understand more than he is able to express with words. When we were told in SCBU that Joshua had suffered a stroke, consequently had ‘devastating brain damage’ my engineer husband needed to have that quantified; so we were told one side of his brain is 50% damaged and the other half is nearer 70%! Those percentages did not really help us and for me, ‘devastating’ was sufficient. We were not told which parts of his brain were affected so we had no idea which skills he would go on to develop and which skills he would never achieve. We were warned at the time that he might never hear, see, walk or talk, so that was pretty ‘devastating’ but we were given the hope of ‘plasticity’; This is where as he had a very young brain, parts of it could adapt and take on new roles and could gain skills that strictly speaking his brain should not be capable of.

So the fact that Joshua does definitely hear and see is miraculous to me, with so much damage to his brain. Joshua does walk, although with a limp and not very far, but as a cashier commented in Aldi the other day as she watched him bolt for the door as I was loading the conveyor belt, ‘he moves fast doesn’t he?!’. They found that at school too, how quickly he could move if he really wanted to be somewhere else or even, not be somewhere. Joshua has limited language but he has more single words now than he has had since puberty and he seems to be adding to his repertoire all the time. So I would love him to meet the pediatric consultants now to show them all that he has achieved over the 21 years since they saw him last. He could give hope perhaps to new parents in our situation when faced with that news, although there would of course be no guarantees that their child would develop in the same way; cerebral palsy is a varied condition and it presents itself in very different ways amongst sufferers, from the mildest impairment to total dependence on carers 24/7 to move, breathe and feed.

So Joshua’s level of understanding : if he is told that he is going to have a bath, go out in the car or go to a café, Joshua understands all of these concepts but assumes that means that they are happening now . He does not appreciate the concept of time or of waiting. It is simple to him, you said that we were going to do these fun things, so let’s do them. These are all physical things that he has experienced and knows what they are and he knows that he enjoys them. But birthdays and Christmas are not physical things that you can see or that come around regularly enough for him to get to grips with I would say. Joshua enjoys both, as they are happening, as they usually involve special food and family and friends coming around but he would not look forward to them coming, we have never been able to do the advent countdown to Christmas Eve- although he enjoys the chocolate in the advent calendar, it has no significance for him. He has never shown any interest in presents, in fact worse than that he is disdainful of them. It is the gifts that most children enjoy about Christmas and birthdays and that is what they tend to look forward to too. But he finds unwrapping presents to be a chore, so much so that we have to spread it over several days and open them for him then try to interest him in the contents. If it is a musical instrument, like a new guitar or a keyboard for instance, then it will attract and keep his attention for a while, but he has no interest in clothes or most toys as gifts.

But I am happy that he is not obsessed by material things, by owning the latest phone or gadget. To enjoy the social side of these annual celebrations seems to me as though he has the right idea, and once again, Joshua could teach us all a great deal from his outlook on life.

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