The Incredible Hulk

Joshua was in an unusually bad mood yesterday but he was livelier than he had been all week. He started off happily enough, coming downstairs around 8 am with a smile on his face and his usual hug for me and he ate his Weetabix happily enough. As soon as he was dressed, he began kicking at the gate to go out, so I decided to take him to the office with me, as I needed to send myself an email that I would need later. As we drove passed Tesco, he began to kick the car, cross that I was not turning in for our normal Saturday morning jaunt. So after we had done my quick job at work, I decided to treat him to pick up a few bits and pieces at Tesco, and that made him happier, though we ran round and were in and out in 5 minutes.

While we were out my husband had packed up the car as we were heading away overnight, so I transferred Joshua into the front seat of our truck, which we use when we are transporting 5 dogs, and I went indoors to find coats and do a final check that we had everything. When I came back outside, he was kicking the car, inpatient to get going. So I transferred him from the front seat into the back, where he could do less damage, and we set off. During the journey, there was still some kicking and banging on my head rest, but he dozed off eventually too. Not that he deserved it, we stopped at Donalds for an early lunch and while he was happy to go in, he did not eat everything and he decided that he had had enough and tried to stand up and leave while we were still finishing our lunch.

We arrived at our cottage and he explored, then had a lie down on the settee – it is exhausting protesting all of the time. Unfortunately, it was not long before we were due out again, so he was not impressed when I tried to put his splints and boots back on. We met friends at a cafe and sat outside as the sun had come out, but we were sitting on picnic benches which had no back support so he was not very comfortable. We bought him a slice of cake to cheer him up but he refused to eat it at first and would only drink his orange juice. He kept smacking both me and his Dad during that cafe experience, hard enough to sting, and his eyes were blazing, I joked that he looked like The Incredible Hulk. He threw a china cup onto the ground, where it shattered, in protest. We wanted to look around the 1940’s weekend display , but he was less keen – stamping on his wheelchair footplate or pulling away and kicking when he was walking. Clearly Joshua was not impressed by our choice of weekend entertainment!

We took him back to the cottage, where he lay on his bed for a while – having timeout with the Live8 show – and that seemed to do the trick, his eyes were less angry when we were ready to go out again, for a pub tea this time for a friend’s birthday. I was expecting more of the same behaviour, and went armed with his ipad, but he behaved really well sitting between his parents and he ate , and enjoyed, all of his meal. He was back to normal, smiling and waving at everyone in the pub and enjoying Shrek as a distraction from the boring conversation. Afterwards we took the dogs a walk and he walked much, much further than I expected him to be able to manage, and with a big smile on his face. We got home at 10 ish and he slid willingingly into bed. I am just hoping that my smiling son wakes up today and not his alter-ego, The Incredible Hulk!

Impatient Outpatient

My friend tells me that Joshua is not naughty but he is communicating, well if that is the case, he was communicating a lot yesterday morning at the Health Centre. We had been sent there for a podiatry appointment as his splints and walking gait have rubbed his skin, so he has callouses on the side of his right foot. So orthotics had asked me to ask our GP for a chiropody referral, which I duly did and this appointment was the result.

It was at 9.20 and as I was unsure about parking facilities and how the rush hour traffic might impact on me, so we were ten minutes early, as I found a Disabled parking space right outside the entrance. We went inside and told reception that we had arrived and were told to sit in the waiting room until we were called. Chance would be a fine thing, Joshua was not in the mood to sit and wait and chaos ensued as he tried every tactic he had in his repertoire to communicate :

  • He kept standing in front of the automatic doors, so that the endlessly opened and shut, letting an artic gale inside each time he did so
  • He walked up to the reception desk, a pillar and a door marked ‘staff only’ and kicked them hard
  • He ran into the adjacent GP surgery reception, leaned over the desk and grabbed their telephone, pretending to make a call
  • He ran down the corridor, trying to access a door marked ‘private’
  • When I found him books to look at, they were tossed onto the floor, as was my mobile phone
  • When I got him to sit down, he tried to knock the chair next to him over
  • He leaned over to stare at a young girl close to her face, the pre-school girl was afraid of him but I was just relieved that he did not grab at her bright, bobble hat as he does not usually allow anyone to wear a hat
  • He stroked a mother’s hair then tugged her ponytail

Finally, exhausted, he sat next to me and leaned on my shoulder, to have a rest and it is of course at that calm moment, that we were called through to see Podiatry. Unfortunately, the lady asked us both to sit down while she filled in an introductory form. As Joshua was being ignored, he began to play up again :  pulling notices off the walls, trying to escape, kicking the radiator, switching a fan on and trying to gain access to her computer keyboard! Having seen how ‘busy’ he was, the podiatrist said that there was no way that she was going to take a sharp blade to his feet as it would be just too dangerous. She seemed reluctant to even ask him to remove his shoes, socks and splints to  look at his foot. But I insisted that she saw the extent of the problem after we had waited so long to be seen.

Remarkably, he sat back on the long couch and happily allowed me to remove his footwear and then he sat very still while she simply filed the callous and even cut his toenails while he was there. She made us another appointment for 3 May and I agreed to bring his iPad next time, to encourage him to sit still both in the waiting room and in the appointment itself. Exhausted by the busy and frustrating 40 minutes in the Health Centre, we got back to the car and I drove him into school, via Donald’s for breakfast.

The Rough with the Smooth

I have written this week about how much more alert and cheeky Joshua has become, well sometimes that cheekiness spills over into naughty, so it is not all good. Yesterday our lively son was very hard work as we waited for our lunch to arrive at a cafe : he simply could not wait or sit still and unfortunately their service was very slow. He kept grabbing my sunglasses off my face – a trick which he finds hilarious, but when they are my only pair of prescription glasses and his fingernails have grown sharp, I do not share his sense of humour. Then he moved onto grabbing condiments off the table and throwing them and then he would not sit down; while waiting for our lunch to arrive I walked him around the adjacent park/crazy golf course four times, once with him pushing his own wheelchair and once more with me pushing him in his chair, until finally I saw the food arrive. Joshua was like a changed person once his fish and chips arrived, he sat quietly and fed himself, happily as he finally had what he wanted.

Whenever I am exasperated by Joshua’s more challenging behaviour and I describe him as being ‘naughty’, I have a friend who explains that he is just ‘communicating’ rather than being bad. I know that in this case it was true – but she is not always right!  He was clearly commincating that he could not wait for his meal to arrive and as we were sitting outside, overlooking a park, he was confused as to why we were sitting around looking at the park rather than playing in it. I often take my ipad with me for when only a Shrek distraction will do. He watched me take my ipad from my handbag, only to find that the battery was flat, so he wanted Shrek but was thwarted, making him crosser.

Although these behaviours are mild in comparison with those that some that Joshua’s peers at school exhibit, they did mean that our lunch out was not as relaxing or enjoyable as it might have been. But I do understand why he was behaving in this way – I was frustrated by the wait for my simple sandwich too – and I appreciate that we need to take the rough with the smooth, as there cannot just be positive outcomes from Joshua’s increased awareness and liveliness and we maybe need to learn to avoid busy restaurants in future, so as not to put ourselves in these situations whereever possible.