Back to Good Old Mum

This week should see Julie discharged from hospital, almost exactly a year to the day since she was admitted.  She is moving from one team of professionals (the inpatient team) to another (the outpatient team).  Of course, since there was a chaotic period of time when she was very ill before she had to go into the hospital, we last met the outpatient team over a year ago "on the way down", so to speak.  Now we are meeting the outpatients again "on the way back up" and we can probably be forgiven for hoping that we don't meet the inpatient team again.

The change of staff, approach and level of cover between the two teams, is very marked.  There is some continuity but not as much as you might expect.  This is not altogether bad: one person's break in continuity can be another person's fresh start.  Especially when you are 15 years old, and ready to reinvent yourself at every opportunity.

It means some big changes for the family as we readjust to having her with us full-time, and taking back the responsibility for her safety that had once passed to the hospital.  We are also having to say goodbye to people who we have worked with for a year, some of whom have seen us when we have been overwhelmed with emotion, or in states of utter exhaustion and despair.  In their place, we are saying hello again to people, some of whom we associate with an earlier very unhappy time when we were all bewildered and frightened by the progression of Julie's illness.

So what makes for a good or bad relationship between a family and these teams of professionals who people our lives?  It seems clear to me that the single biggest factor is empathy, and the single thing that determines empathy for a parent in our situation, is just being a parent yourself.  Those with children of their own tend to identify with you, and it shows when you interact with them. This is a pity because it means there is no easy shortcut for the non-parents.  I have been surprised by how few of the professionals we have worked with have children of their own - although given the punishing hours that many of them work, this is probably understandable.  It is the source of endless misunderstandings, some of which can be hilarious, some not so funny.

As an example of the sort of "culture clash" I mean, consider a conversation I had with Julie's consultant.  We were talking about what the family was like when my children were small.  We had moved house, but the children adapted very quickly, and I happened to mention that I had taken the trouble to keep them in the same room at night for a while, even though we had enough space now to give them separate bedrooms.  My (childless) consultant was fascinated by this, and seized on it as evidence that my children had been brought up in an unusual environment where change was highly controlled. She cheerfully repeated it to other people in the team, using it to illustrate the kind of atypical family my children came from, and how this affected my daughter's response to change in later life.  I tried vainly to point out that this practice was not at all unique to me - I had been given this advice by a friend - and I know lots of parents who had their children sleep in the same room (and sometimes the same bed) for years.  It was only remarkable to a non-parent.  To most parents it just seemed a no-brainer, typical of the sort of workaday tip or trick that parents pass on to each other all the time.

This example made me laugh, but some examples of empathy failure make me swear with exasperation and worse. There are still staff who persistently try to impose appointment times and places on me that suit them, despite my repeated explanations that I cannot leave my younger child home alone for hours at a time after school.  At one time, there was a member of staff who regularly phoned me at work and read out my daughter's desperate suicide notes without warning down the phone while I sat in stunned silence in the middle of my (open plan) office.  And I have been given plenty of unsolicited advice and warnings from non-parents: I should stop working, I should under no circumstances stop working, I have been putting pressure on my daughter to study (I haven't), I should buy a dog, I should stop cooking family meals, I should join a church (yes, really), I should "be less anxious" (never worked this last one out).  I could write a book with the parenting advice I have received, though none of it, I am sure, would impress most of the parents I know.  It has all been rather disorienting but, at the end of the day, I am lucky that it finally all resolved down to this very simple truth: that I do know best how to parent my children, just as the professionals know best how to treat my daughter's illness.