What does a ‘health emergency’ look like compared to normal everyday health management of intense needs for individuals with disabilities who have extensive chronic medical issues that need to be managed with regular hospital trips or doctors appointments?
A high school student who doesn’t sleep through the night, eats such small variety of foods and is still on formula in bottles, smears faeces and eats it. This student eats non food items but only when outside and mostly plant / tree material. Normal day to day management includes measurements of what is being eaten and drunk in terms of millilitres from the bottle and how many bottles. Medications and supplements are numerous. Hospitalisation trips include: not drinking for a week; eating a twig and needing to have it removed.
A 20+ year old presents with regular seizures that used to require an ambulance to be called. Medications have been used to support his seizures and anxiety at the same time. History of absconding and climbing in and out of the house. Yet now doesn’t move much and refuses to go lots of places. During a period of heightened physical distress which often leads into symptoms of his epilepsy, he walked himself up the aisle of the bus driving him home, opened the door and fell out onto the road. He suffered multiple injuries and required surgery to insert supports for them. A second surgery was required to remove the pins. His arm became inflamed and was swollen to 3x the size from the elbow to his wrist, the wound also weeped.
Both of these loved ones are non-verbal. Both have significant non-verbal communication skills when interacting with others that they are comfortable with and are able to express subtle details that assist constantly with their health care management. Both of these loved ones have physical flow of movement issues and high levels of physical ‘stiffness’ in their bodies. Both allow the therapist to engage in activities with them that they will not let others do, repeatedly allow.
The level of interaction with medical staff can vary in the details that are understood on the day of their appointments. Some staff do incredibly well with understanding the impact and break down the issues and continue to work through this, others struggle to understand that a quiet non interactive individual does not necessarily mean that that individual does not understand ‘their injury’ or ‘their health care issue’.
Once issues are often worked through EFFECTIVELY with the individual they are often then able to ‘trust’ more for the next ones and then may be calmer and more compliant to work through the back and forth interactions of pointing and touching and head nods etc to acknowledge and work out levels of what is happening. For the individual with the swollen arm, he was able to ‘push’ with his hand so gently against the skin of his arm in different areas to ‘feel out’ the damaged area, so that he knew ‘himself’ where the areas of most pain were compared to others. Because these types of issues can come up frequently he has developed an understanding of the process that we have the conversation in OT / with his parents and then we work out what ‘we’ can do about it and then what he / they / we have to wait for the doctor to do. He understands the ‘roles’ of different people. He physically spends a lot of the day ‘protecting’ himself from the touch or interaction of others. Given he is non-verbal how do we measure those interactions and the significance of them as compared to the medical issues that are hidden? Easy. Is he like that with everyone? NO. He isn’t..
No social stories are required, no visuals are required when interacting with the therapist and his parents during these sessions unless he needs to talk about sequencing of something that has happened elsewhere rather than the conversation that we are having in the here and now. Visuals slow us down but they were the base of what we needed to use for a long time. Hand drawn ones. Others work with other people, so a communication folder is still used for other places and with people that don’t know him well or who struggle to understand his non-verbal and verbal communication. He uses a multiple range of strategies based on the environment. We often have a period where we cant move on because we need more vocabulary, but the issue has been that there are CATEGORIES of concepts that he wants to take control of where he knows that he doesn’t get to do that or that it is a special event / occasion. He likes Disneyland and driving the cars. Just a little. So when his family members go away on holidays he has been repetitive about certain topics but he also knows that he cant ask for certain things because they don’t happen so frequently and they cost a lot. So he’s a little angry at the moment because Covid stopped his Disneyland holiday, where he would have seen old friends who live in California as well. He’s a little angry at the moment too because his visit to the doctors about his arm didn’t result in big improvements. He’s a little angry at the moment because of the numbers of staff changeover that happen. He likes it when people leave him alone and don’t ask anything of him. Pain management is part of Occupational Therapy goals for his programming, his physical coordination is part of his non-verbal and verbal communication skills to be able to let others know what is happening but also to be able to take care of his own needs.