I had to go to the hospital for a meeting with R. (Chris’ Speech and Language Therapist). I found Chris asleep on his wheelchair in the hall; head down with his torso twist and bent to the right. Not a pretty picture. The staff had not been able to wake him up for lunch so his food was waiting… Coincidentally Chris woke up for me and I fed him… Although he ate a good amount, Chris was just swallowing the food without chewing - which is not safe at all.

Similar to the weekend, Chris was spaced out, unfocused and in his own world. It is hard to describe him precisely but obviously and clearly something is not right with Chris. Before, Chris was so attentive and alert and aware of his surroundings that if he was sitting among a group of people, no one could tell much about his disability because he would make eye contact appropriately with whoever was talking, turn his head to voices coming from different directions, etc. Since the weekend, he is just not making much eyes contact and his gaze wanders around and into the space.

His PT also noticed Chris is very “drowsy”, he is sleeping a lot and slept through his physio this morning. Chris fell asleep again after his lunch. Chris has not slept this much in ages. I raised this with the nurse – who will speak with the doctor – and I have asked everyone to please keep an eye. Is he having seizures? Is this hydrocephalus? Clinically Chris is very stable and there are no indications of anything wrong with him. But I know something is wrong with him for sure – I just do not know what is causing this. There has been no change in his medication. Chris has a very weird indescribable episode during lunch: he looked like he was making tons of “effort” not shaking but trembling a bit (like Hulk would do before becoming Hulk). Is this seizure? I would not know how to recognize one and no one was around when it happened.

Chris has been having PT in the sensory room so they can isolate other stimuli. He goes on the water bed – which is warm – and the idea is to soothe and relax him. Usually he does not enjoy the stretching etc as it hurts him a lot.

Regarding my conversation with his SALT, her primary goal is to work with Chris’ hyper-sensitivity. I told her Chris has improved a lot already on the hyper-sensitivity front, but still she feels this needs to be addressed before further work with communication. By hypersensitivity I mean Chris jumps when touched, especially on his arms. He used to not tolerate any touch on his face but this has improved in the last months. So her short term goal is de-sensitization by working with various sensory stimuli, and then will work with his ability to interact.

She has confirmed what I feel… that Chris does not have cognition to understand language, but he clearly responds emotionally to the tone of people’s voice (jokes or loving tone). She explained that babies/ young children do not understand language but know when someone is speaking softly and respond by smiling and laughing. This is what I always thought about his smiling etc.

The SALT does not want to use guards for Chris teeth grinding because she finds it too invasive and Chris will continue to tighten and grind his teeth. She prefers to work with his jaw and face to relax the muscles around his mouth. I totally agree this is a better approach as it resolves the problem for good, as opposed to minimizing the damage from the teeth grinding.

My parents due to visit tomorrow so will see how they find Chris.