Joshua Go!

I have been reading this morning about the positive impact that the game ‘Pokemon Go’ has been having on some autistic young people. That these autistic teenagers have been encouraged to go outdoors and take some exercise for the first time in their lives, in order to find the Pokemon characters. Indeed I saw several young men out on the cliff path yesterday, while I was walking the dogs, all gazing at their mobile phones and running around in random directions. If the game has had a positive effect on introverted sufferers of autism, then it cannot entirely be the damaging phenomenon that the media have warned us about. Parents are reporting that they are having family days out for the first time and that their autistic children are getting more exercise too, while dashing around in search of the elusive characters.

As a small boy, Joshua loved the outdoors, he seemed to prefer it and he could spend hours on the beach, standing on the shore, watching the waves coming in and going out again. Yesterday he was awake at 5am, contrary to his usual holiday sleep pattern and a sign sadly of things to come, and he was full of beans. We took him down to the beach and I walked him out of his wheelchair down to the shore, as the tide was in, it was not far. He glanced at the sea then turned around and dragged me back to his waiting wheelchair, so I guess he was not in the mood for sea-gazing. So instead he ate a chocolate brownie in a cafe right on the beach, where in the past he would have been itching to get onto the sand, this time he sat people watching and enjoyed his sticky treat.

It can be difficult to entertain Joshua sometimes, when his favourite activity is to stay at home and watch his favourite DVDs over and over. Even when he has enjoyed a fun time out, he is usually most excited to return home to the familiar, which can be disheartening when we have tried hard to amuse him with something that he used to enjoy. So that is why we need to be more imaginative and continually expose him to new activities and interests, as he grows older.

So long as Pokemon Go is supervised, where players may not be able to keep themselves safe, then it sounds like a fun game and I am glad to read that it is benefitting some members of the autistic community, as the media only had horror stories to share when it first appeared on the scene. Technologoy can be used positively to bring light into many lives.

Joshua’s Fitbit

I am not a very technical person, gadgets are more my husband’s domain than mine, but I have bought Joshua a Fitbit for his wrist. It send information about his number of steps, quality of sleep and his heart rate to my phone! We have often seen his heart rate dip to 30s-40s after anaesthetic and seizures in hospital and we have been asked, what his heart rate is like normally and of course, we never knew. Now based on yesterday at least I can see that at rest, it hovers around 70-80 at rest.

I keep an Excel spreadsheet of Joshua’s seizure activity and have done since his brain surgery, as I was finding that Doctors would ask about the number of seizures he had been having or the volume of rescue medication that I had administered, and I tended to recall the previous two weeks only. So now I am using electronics and computers to be more scientific. It will be fascinating to see what happens, for the first time at home, to Joshua’s heart rate before, during and after a seizure.

On that same Excel chart, I record, rather spasmodically, the approximate hours of sleep Joshua has and we can see him range form zero to 15 hours regualrly. But if I am asleep myself and all is quiet and he stays in bed, I am assuming that he is sleeping right through. This Fitbit device will record for me the quality as well as his hours of sleep, which will be interesting too.

It is still early days of us both getting used to it but I have found a problem in its monitoring as he was getting more credit for moving around than I know he really did. But when Joshua is happy, which he has been very happy this weekend, he ‘flaps’ his hand in excitement. The gadget is on his left wrist and so it has been shaken up and so I guess it is interpreting that movement as Joshua running about and even climbing stairs! I will change it to his immobile right wrist and see if that seems to be more accurate, but even so it was the seep and heart rate monitor that I really want.

Fortunately Joshua is not concerned that this gadget has appeared on his wrist, so I am certain he will tolerate it there and we will see how it improves our understanding of our boy!