Private Investigator

When you have a non-verbal child, you are forced to pick up cues to indicate if he is hurting somewhere or if he is unwell. You have to be alert and to read the signs and effectively, to be a Private Investigator, especially if your child has a high pain threshold and does not cry ever. Joshua has had deep cuts to his head, after a tonic clonic seizure has thrown him forwards into a brick hearth or a porcelain toilet, but he has not cried. The most that he has reacted is to bite hard on the knuckle of his finger and once I have heard him wimper like an injured animal. But when there has been an accident, there is no need for intuition but illness is more difficult to diagnose.

We missed the fact recently that Joshua had a chest infection, until it reached fever pitch, and it impacted on his seizures and we ended up in A&E last weekend. He had an annoying cough for weeks when he went to bed, but nothing that seemed to need cough medicine we explained to the consultants at hospital. From now on,  I have learnt that I will not ignore a persistent cough and I have asked school not to take him to the Forest School on cold days, as that may well have brought things to a head this past weekend. Joshua is not as mobile as his peers so that may impact on his ability to shake off a cough.

Joshua has been holding his right foot up in the air in a comedy pose and he always asks to take his boots and splints off as soon as he gets home too.  Due to the distortion of his foot position, he walks on the side of his right foot rather than the sole, so he has developed a callous, which we are getting treated by podiatry – though I postponed yesterday’s appointment as he is still too unwell to  go outside in the cold air.

The Christmas before last, we had to investigate why Joshua stopped eating. We went to the GP to give him a check up of his tonsils and his stomach and found nothing. Then we made an appointment with the dentist to have his teeth checked too. There she found the culprit – cavities , oral thrush and gum disease – but it was another 7 months before he was treated under sedation. So the investigation, got a result and then we had the frustration of waiting for the outcome that Joshua desperately needed.

With a non-verbal child, you need to follow up changes in behaviour and also read body language, so it helps that as a parent you know your child better than anyone else. Sometimes you just have a feeling that something is simply not right, in that case, go with your instincts. I am often intuitive about changes in Joshua, but I am also frequently slow to take the next step to involve the GP or dentist, as I am usually optimistic that things will resolve themselves. I am going to try, based on last weekend’s events, to refer to health professionals more often and faster and  I will continue to be alert to non-verbal signals from Joshua.

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Help yourself

All of his life Joshua has relied upon others to realise when he might be hungry or thirsty and to provide him with food and drink, like a baby bird I say. It was as though he did not have the instinct to recognise hunger or thirst , let alone show the initiative to go to the fridge or cupboard to help himself.

But this is changing now, with our new more alert, engaged son : last night, as I was in the kitchen making his tea, Joshua came in to check on my progress. He looked around the room and was clearly dismayed that the mashed potato was still a way off, so he went to the fruit bowl and surveyed the available choices, then handed me a carefully selected satsuma. That doesn’t sound like much of an achievement  I am sure, but believe me, that is huge: it demonstrates to me that Joshua recognised his own hunger, worked out that his evening meal was not yet ready, found the fruit bowl and made a healthy choice then gave it to me, recognising that a satsuma needed to be peeled, rather than simply eaten whole. Each of those steps show cognitive ability that he has not shown previously, in the past I would pre-empt his hunger or thirst and supply the missing item, so that he did not need to think about it.

Joshua has never been a good drinker, apart from when he was pre-school age when he would drink copious amounts of apple juice and say ” put some more in” when he wanted a top-up. But since he started at school and since his epilepsy took hold, Joshua had to be encouraged gently to drink – you could not be too heavy-handed as then he would ignore the drink being pushed on him. Even now it is better to leave a drink lying around for him to find or allow him to think that he is stealing someone else’s, if you want him to drink. But these days Joshua will indicate that he is thirsty by grabbing a bottle – it might be a bottle of beer or tomato ketchup even – and holding it up to his lips. That too is a clever ,and effective, way to ask for a drink and we always take the hint now.

These are both examples of how Joshua is changing, learning and developing all of the time, even now that he is 17. As he gets older, I guess that he is more aware of what he  needs and now he is finding the communication tools to ensure that he gets what he wants. Keep it up Joshua!

Do as I do, not as I say

Joshua has made us laugh a lot this holiday by showing his spirit, determination and expressing what he wants very clearly. He did so again yesterday and on both occasions, he got his own way :

We had wandered around exploring a seaside town , with Joshua in his wheelchair, yesterday afternoon. After a while, as it had got warmer, we stopped at the beach and all had a snooze in the sun on our picnic rug. Joshua had obliged – unusually – and he had used my tummy as a pillow and I am not sure how long we lay that way. Siestas are one of the joys of holidays for me, as there is no reason why you cannot have a sleep whenever you want – that is more problematic at work!

We all woke up around the same time and Joshua sat up, looked around and decided that he had had enough beach-time. He struggled but managed to stand up and then he marched purposefully, quickly and expertly – as walking on stony beaches is not easy for any of us – to his wheelchair, which was waiting on the prom and he climbed in. There could be no less subtle message to tell us that he was ready to leave. We laughed at him and obediently packed up the rug and followed him.

I then needed a cup of tea before we headed home, as I had not had one for hours, so we found stall selling hot drinks and sat at a table, listening to live music. Soon after we arrived, we saw Joshua casually reach behind him with his long left arm, to stretch out and try to steal a chip from a young girl who had sat down with her takeaway. I shouted no to him and pulled his arm back while my husband rushed off to buy some chips for him, as it was 7pm by then and well past his teatime. He grinned as his box of chips arrived and proceeded to devour them, while we finished our cups of tea.

Joshua has a long list of key useful words nowadays, but he is not up to sentences like ‘could I have some chips please mum?’ so this stealing was a really effective, non-verbal way of asking for what he wanted. Given the rate at which he consumed them, he was really hungry too. While I do not condone stealing of course, I admire Joshua’s ingenuity in showing us that he was hungry and I adore his cheeky smile when he knows that he is doing something naughty.