Now that the eating plan had been dumped, my son's weight was heading south again; he'd lost exactly 3kg in four weeks (I have the weight charts to prove it). He was also getting more and more violent, volatile and manic - and he was taller and stronger than me, so I couldn't restrain him. My husband was working away from home so most of the time it was just Ben and me in the house. Or, rather, Ben, the eating disorder and me.
I felt as if the whole world was against me: CAMHS, my husband and my son. Yet, because of my iron-strong gut instinct, I simply couldn't accept their advice to 'back off' and to stop talking about food and eating.
My gut instinct said this was WRONG and that an adolescent who had lost around one quarter of his bodyweight (and 3 kg in the past four weeks) and who had changed beyond all recognition - mentally and physically - needed re-feeding with a proper balanced diet in an attempt to get his body and mind back to where they used to be before the eating disorder struck. Or at least to get his body back there so that we could then work on the mind - the kind of treatment an adolescent might get if offered Family Based Treatment (FBT) otherwise known as the Maudsley Method.
But no-one was listening to me. Instead they were telling me to 'back off'. In other words, to shut up and stop going on about eating and food while my instinct yelled out NOOOOOO!!!!!
On 23rd June 2010 my son's eating disorder was raging and here's what I posted on the Around The Dinner Table Forum:
Some of you will know what I mean when I say we had another night like the one we had a couple of weeks ago [when my son attempted to climb onto the house roof, not caring if he fell off]. Only this time my husband is working away so it's just me...
No roof, but an email to a friend, distressing enough to have the friend's mum calling me to warn me something was afoot. [Ben had emailed a friend asking for reasons why he should continue living. Not surprisingly the friend was traumatised by this and it resulted in the friend's mother calling to tell me what had happened...]
All this resulted THE MOST TERRIBLE NIGHT with the eating disorder at its most "magnificent" and "satanic". Me, on the phone to the emergency doctor asking for advice, but my son refusing to go to A&E (ER) to see the mental health team. [And I wasn't physically strong enough to carry him there...]
My husband called me half-way through all of this and tried to talk to my son to bring him out of his mood, then I took the phone and my husband started to blame me for these eating disorder moods because apparently everything would be easy-going and running smoothly if it wasn't for me "going on about food", implying that my son only has these outbursts because of me. And my husband has banned me from talking to my "cronies on that forum" [the Around The Dinner Table forum] because "what do they know? Everything they say [usually about the need for re-feeding and seeing if he can be treated using the FBT / Maudsley treatment model] goes against all the professional advice" (i.e. CAMHS' advice).
So I'm banned from mentioning food ("How do we treat an eating disorder without talking about food?" I asked!!!)
My husband just wants to let Ben carry on as he is. If he gets bad enough to be admitted as an in-patient then so be it, let the professionals deal with it because "they know what they are doing and you obviously don't!"
I ended up hanging up on him as it was blame, blame, blame... Ben heard the whole conversation and now every time we have one of these eating disorder fits, he is going to blame me. And no way will my husband look at any of the info you sent through... he hates you all!
In the end my son went to bed in a fake relaxed mood (undercurrent still there...). The eating disorder no doubt jubilant at the fact I was surrounded, General Custer Style, enemies around me, all fighting on the side of the eating disorder.
Thankfully once my husband was back home for a few days and I was able to talk to him in depth and he had time to read through the various books and talk to some of the parents on the forum, he began to come around to my way of thinking so I didn't feel so alone.
But on the 23rd June 2010 I felt gagged. No-one was allowing me to talk about eating or food - yet, from what I was reading and learning, not to mention my gut instinct as a mother, that was the NUMBER ONE issue that I needed to be talking about and working on.