Not What You Expect

The mood in the trenches is subdued.  We have been given our orders to collect Julie tomorrow after her week in hospital, and we all have our own private anxieties about the battle that lies ahead.

The omens are not good - her mood is low, she is not sleeping well, she repeatedly attempted to self-harm on the ward this week, the staff have repeatedly resorted to "PRN" (basically, sedation).  The hospital have changed her medication yet again: her olanzapine has been increased, and they have added a thyroid hormone into the cocktail, presumably to add some extra zing.  School has finished and with it the vague semblance of structure on the ward and at home.  To cap it all, we have suddenly been told that we are starting the transition to a new agency (the psychosis early intervention team) next month, which means a new set of personnel, and disappearance of some familiar faces.  This is part of the inevitable process of moving away from child and adolescent services, towards eventual adult services (and all this implies).  Experience suggests we are not in for an easy ride this weekend.  Meanwhile I have gone down with a chest infection, and there is no sign of the rain letting up.

But Julie never ceases to surprise, so who knows how it will look at the end of a week back at home.  Hospital stays are always disorienting, and a poor guide to overall progress and, once complete, the transition to the psychosis early intervention team should be a good thing. (Once we get to know them, the new team should ensure some stability over the next few years.)  Julie has confounded our expectations time and again.  In the meantime, I have been amusing myself compiling a list of the many other ways in which Julie confounds the expectations of people working with her (including her parents).  Here are my round dozen:

1. Julie is technically a "school refuser" but doesn't fit into the normal category of school refusers.  She is not difficult in class, does not struggle with the work, and has no family problems.
2. She is on the gifted and talented register, even though she is not attending school, and will be lucky to get a handful of GCSEs (school certificate exams).
3. She is labelled long term sick (and sometimes disabled) but there is no drip or wheelchair in sight. (These are, of course, just the usual misunderstandings surrounding mental illness.)
4. She is keen to have an education, and is ambitious to have a professional career, but won't go to school.  She is not interested in the low-stress activities into which some of her workers have been steering her.  A common misconception seems to be that if she won't go to school she isn't interested in (or is incapable of) completing her education.
5. Her home tutors, especially in English, enthuse about her abilities, and predict high grades.  Julie, however, does not read books for pleasure and finds English dull.  She has an insatiable appetite for junk TV.   She is not a bookish person who will get an education if left to herself.
6. She needs constant support and supervision but she does not have "special needs" (the main focus of extra provision). There are no resources available for her in school. She does not fit into the category of pupils who are usually identified as having special educational need (e.g. because of autism) and who might attract extra money.
7. She has spent so much time talking to adults (and endured endless meetings) that she is very good at holding her own in adult company, coming across as rather serious but mature. Most people who have met her once or twice are astonished to find that she needs constant support and supervision, and that she takes regular overdoses.
8. She takes regular overdoses and injures herself seriously but is then extremely sensible, alerting us at once and complying with all treatment.
9. She is sixteen years old but does not have the energy (or interest) to get involved in high-octane teenage activities (like the National Citizenship Scheme which she was encouraged to sign up for this summer). It may never be appropriate to involve her in some of these activities while she is on such heavily sedating medication.
10. She is sixteen but is not interested in sex, romance, horror or thrilling experiences. In fact she is often repelled. This is partly because she has enough on her plate for now, but also because of the side-effects of the medication.  This sometimes makes it difficult for her to enjoy the same films, books or topics of conversation as her peers.
11. She is a text-book example of someone who would have been helped by the psychosis early intervention team, but she began her career so early that she has had to wait a full two years to reach the minimum age covered by their service.
12. Her parents are quick to point out short-falls in the service provided to Julie, but her mother inconsiderately persists in working full-time, failing to fill in the gaps in provision adequately.