I alternated between shouting and pleading. My son alternated his yelling between loud and louder. I was too frustrated to worry about the scene we were making. I’m sure we weren’t the first people to have such a showdown.
I had taken Deane to see the therapy dogs that are brought into the hospital every week. Deane likes dogs. We have spent hours sitting on the floor holding Deane so that he could pet dogs.
But I don’t think this fight was about dogs. This power struggle is over Deane’s very teenage desire to spend all of his time in front of a screen. Deane doesn’t play video games or surf the net. His screen is the TV and, occasionally, his videos on his iPad.
Deane is slowly making progress on the medical challenges in front of him. Much to our relief he is sleeping better, he has begun eating most meals and is showing signs of regaining the strength to drink through a straw. His physiotherapy is progressing although his right leg – the reconstructed one – is still highly sensitive.
All of this means he is beginning to regain his energy. Before Deane had been falling asleep every time he got into bed to rest which meant we were operating at a completely different schedule than the rest of the hospital. We weren’t eating meals at the same time. We kept missing recreation activities because we were eating and school just seemed end too early for us to fit it into our day.
Now that he has more energy, I thought that we should try and participate in some of these group activities. This would allow both of us to get to know the other patients and their parents. It would also get us away from the four walls of this hospital room. Herein lies the problem.
This is not a result of Deane’s surgery or hospitalization. It has perhaps been enhanced by the fatigue and vulnerability he has been feeling, but this issue is one that has been increasing for a couple of years.
Deane has always liked TV and, like many developmentally delayed children, he likes to watch the same things over and over again. We have accepted that, although we continue to try to introduce new material – for our sanity if nothing else. What has increased more recently is the force behind his refusal to do anything that will take him away from his beloved screen.
After a month in front of TV with all his favourite videos to choose from, he is now even more adamant that that is where he belongs. Pre-surgery, when he was going to school every day. I could handle him in front of the TV when he came home. If he were going to school here, I could even handle most of his rest time being in front of the TV. But at the moment, except for daily physio, he has no activity outside the room. Hence the dogs.
I may be being naïve but I’m hoping that as he gets stronger, we can use this time to convince Deane that there are fun things to do away from his TV. And maybe, just maybe, it will carry over to outside the hospital.
We have been longing for Deane to become more like himself. We wanted the sleeping, the eating, the drinking and the interaction. I had conveniently forgotten about the more challenging traits that come with him being more himself.