Fact One : Hari is a foodie!
I sometimes wonder what part of that fact the doctors are incapable of understanding.
When Hari was born she had some problems with feeding - it wasn't that she didn't want the food and it wasn't that I wasn't feeding her - she just found the process of feeding difficult and needed some patience. She would be exhausted after being fed and needed smaller feeds at shorter intervals. Added to this she was a bit small at birth and so her stomach would probably not hold as much food as that of an average sized baby.
As time went on and she wasn't growing the accusations that I wasn't feeding her properly began, these accusations have never gone away - they have proved a useful tool for doctors to divert attention away from their own inadequacies and discriminatory tactics by blaming as much as possible, in relation to Hari's health, on poor nutrition and me failing to feed her properly.
Whenever Hari was admitted to hospital the whole feeding myth would raise its head almost immediately. Nurses would harangue me on the subject - which is odd as we have never encountered a nurse who could get Hari to feed as well as I could. Dieticians would be summoned and there was even an attempt to get the kitchens to create food specially for her - I told them what Hari liked and they cooked it. In theory this should have worked but we are talking about hospital food and it was never the same as I would cook it at home! Of course when Hari wouldn't eat sufficient of the hospital creations it was obviously my fault!
I dreaded Hari being in hospital because I knew that this whole myth would be central to any admission and that this would result in her real needs being ignored. After all, why bother wasting precious budgets on real medical practices when you can manipulate the situation by blaming everything on inadequate nutrition and dietary intake?
Fact Two : There is a written record of Alan Emond referring to Hari as having 'Non Organic Failure To Thrive'.
Now then - 'Non Organic Failure To Thrive' is still recorded in the online General Practitioners' Notebook as being: 'one of the earliest indications of serious parent/child interaction dysfunction. It is a form of neglect ...' - the reference goes on to say: '...It is caused by both caloric deprivation accompanied by emotional deprivation.'
There are now various papers suggesting that there are other causes, some of which make the distinction between 'failure to thrive' as a symptom of illness or disease and 'non organic failure to thrive' as a form of neglect.
At the time that Alan Emond recorded his diagnosis of Hari as 'Non Organic Failure To Thrive' I was unable to find a single paper that didn't base this diagnosis on parental neglect.
Fact Three : Alan Emond was wrong!
I have never neglected to feed Hari. I have fed her as much as she is physically able to eat. I have found crafty ways of supplementing her dietary intake and we have had great fun over the years with some of her favourite foods - but maybe now is not the moment to talk about chocolate cheesecake! Hari's cerebral palsy causes some problems with feeding - for instance her skills in relation to chewing are variable and so her diet can be a little restricted - no deep pan pizza or bacon butties - but that is beyond human control and there are plenty of things she can manage to eat - best not to mention the chocolate cheesecake right now!
On one occasion a friend who is a surgeon presented me with a short piece that he had torn from a medical journal - it related two different approaches to two different children with disabilities who had feeding difficulties - it concluded that in taking a forceful approach (in a very sneaky and underhand manner), that brought the skills of the parents into question, irreversible harm was done to the relationship between the hospital and the patient/family; the piece called for a better attitude to dealing with feeding problems of children with disabilities. The same friend who gave me this article was also amazed at the amount Hari could eat - but I can not lie to you - she was eating cheesecake at the time!
So clearly there was nothing 'non organic' about Hari's failure to thrive - but some people refused to accept that there had to be a medical reason for her lack of growth - for them 'non organic failure to thrive' was a convenient label that excused their lack of concern about her real medical needs.
But I'm still saving that story for later!
Fact Four: Boozy Cake is good for the soul!
Hari has always been a fan of Boozy Cake!
Now you will probably know Boozy Cake as Tiramisu - but since Hari was so keen on it at a young age it became Boozy Cake in our house.
Hari can eat three quarters of a family size Tiramisu in one sitting - and I can get a large number of people (including a retired police officer, teachers, clergy etc.) to testify to that fact. Indeed these witnesses have always been a trifle miffed that Hari would not save any for them - well apart from the retired police officer - he was always allowed a spoonful!
There is more to say about the myths surrounding Hari and eating but we'll save that for another post - we promise not to make you wait too long.