Interpreter required

Joshua had a longer day at his new adult respite provision yesterday, he was there from 8.45 until I collected him at 4 pm, so that was a  longer introduction even than a school day. I was delighted that, when he worked out where we were driving to, that he was happy and rather than holding back in the car when we arrived, he happily walked down the path, to wait at the door with a big grin on his face. Even though he is virtually non-verbal, Joshua would have been able to indicate if he was wary to go back there, so that was a great start to the day and a positive sign of his attitude towards the place and the staff.

I thought that I had told the manager everything about Joshua, we have had several meetings and she has been to school and his current respite place to speak to staff too, but there are still many things that I did not explain. I am impressed that the staff there have endless questions about him and his ways when I go to pick him up. they range from practical tips like:

  • How do I fold away his wheelchair to fit it in the car boot? She watched me fold the chair away, the order in which to do it and how best to man-handle it into the car
  • How best do I lift his legs into the car, without hurting him? I explained that he can lift his own feet into the car but if you are in a hurry, then it is sometimes easier to do it yourself! I could not tell her how I do that but she watched me and commented how easily I lift both legs together, behind his knees.
  • I am sorry about his pad, but I was not sure how to change it? I have been changing Joshua’s ‘nappies’ since he was a baby and so I have developed a quick and efficient technique, now that he stands while being changed. I briefly gave a demonstration, in the car park ,of where best to stand in relation to Joshua, in order to have access to his front and back, but I am aware that it requires practice.
  • You told me to remove his boots, but do I also take his splints off? Yes I was not clear, I meant for them to give his feet a rest and to remove both his boots and his splints and put some slipper socks on his feet instead.
  • Joshua has been sweeping up here, how do we tell him no, when we do not want the brush in the lounge? He understands stop and no, so tell him and remove the brush from him, ideally replacing it with something just as fun that he is allowed on the lounge carpet, like a hoover.
  • Joshua tried to go to sleep on the beanbag, is that OK? Yes absolutely, I have never known his siestas interfere with his sleeping at night. If he needs to doze, then please go ahead and allow it, just do not let his nap go on for over two hours! There is more risk of seizures if Joshua is over-tired, so be guided by him and allow him to catnap in the car too. if he needs to

They have also asked about Joshua’s communication :

  •  What does it mean when he taps his chest? Joshua is saying love when he pats his heart and so he had been telling them that he loved them, while in their care. After just three visits, he falls in love quickly
  • What does he mean when he taps his knee? I am not sure here, it could mean a variety of things. He could be telling you that it is sore, maybe asking you to copy him and he is playing a game by pointing out your own leg or he might be saying here/now, it all depends upon the context.
  • Joshua kept saying ‘thank you’ when we got to McDonalds or back from the walk? That means he is really grateful and he has enjoyed what you have done with him or he is relieved to get back to the house. This is the only phrase that they have heard him utter, but it is a good and clear one and his politeness makes me proud as he uses it so appropriately.

I am happy to answer any of their questions, as it shows that they are investing time in understanding Joshua and in wanting to get things right for him : you only learn in this life by asking questions. I am just amazed by how much I take for granted and how much that has become so instinctive, that I no longer recognise it as being unique to Joshua. So this was his final session in the Easter holidays, the next time he is going there is after school one day next week for his tea and I will collect him before bedtime. I like the pace that we are working to and it feels comfortable for Joshua too, it does not feel that we are rushing him or going too slowly either. He is taking it so much in his stride, he sat on his allocated bed in his bedroom yesterday, before we left and I do not think that we are too far away from his first overnight stay already. We have moved at a pace that both he and I can tolerate and that the staff at his provision can accommodate too, so that is perfect.

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!