Hi Mel,
Of course your not 'going on'! Anyone in your position would be as worried as you and Sophie.
Is there one particular person who is dealing with all this? If so, could you ask what things you could change/put in place in order for them to drop the 'care proceedings'? I completely understand how awful you must both feel, but I also sort of see why they think they need to do this. NOT because you are a bad mother - I suspect its more to do with the hba1c etc. If what your son has told you is true (which i suspect it is) then i think you need to see the person in charge and get to the bottom of what would make them happy and see if the requests are something that both you and Sophie could implement.
I cant imagine how desperate you must feel, I just hope that there can be some middle ground and perhaps if Sophie could try some new methods of injecting or using the cream etc so it doesnt hurt her - perhaps this will be enough to placate them.🙂Bev
Hi Bev, it's quite complicated in that the consultant sided with the head teacher when it was discovered that Sophie had taken part in a Children In Need fund raising concert before Christmas. Bearing in mind Sophie is a virtual prisoner to her ME, when she was asked to participate, and she wanted to, I couldn't bring myself to say no. How many parents could have done, knowing their son/daughter has so little fun in their lives? It was ONE night. And yes, obviously it drained her, we both knew it would, but it was the 'trade off' that was necessary at the time. At the last meeting at school, (where the head is already hostile to Sophie and I - she tried to stop stop Sophie being taken on roll), it was made 'public' about the concert. The head teacher quite literally pounced on it, and said that I was irresponsible for not putting Sophie's education first. The doctor came down on her side. I pointed out that it wasn't that one night that was continuing to prevent Sophie taking part in her tutor sessions, rather the 'brain fog' that is so typical of the ME. When I said that given the awful time Sophie has on a day to day basis, and it was a 'one off' bit of fun, a chance for Sophie to feel like a 'normal' teenager for once, and that she is entitled to have 'a life', the head rounded on me and said "not at the expense of her education". Like I said the doctor agreed with her.
I'm still scratching my head; on the one hand he wants Sophie to go to CAMHS, as he says he's concerned about her mental health, and yet the very therapeutic benefits of taking part in something with her friends was described as irresponsible! The doctor went on to divulge more or less the whole of Sophie's previous hospital consult, in front of everyone in the room, making it known that Sophie had refused CAMHS and a hospital admission for her diabetes, even though both Sophie and I had made it clear to him at the hospital appt., that we didn't want him to bring that up at school, as we knew the head teacher would use it as a stick to beat us with. The result of allof that was the 'level of concern' was raised, between the doc and the h.teacher, to involve social services.
The doctor then wrote a grossly exaggerated letter of concern to our GP, and sent one to me saying, basically, 'do as I say: or else'.
Sophie's HBA1Cs have been unsatisfactory for several months, the doctor wasn't talking about involving social workers, pushing for child protection procedures to be implemented, it was the mention of her taking part in that concert. I have been in touch with the ME Association, and had some excellent advice from them, including being put in touch with their paediatric medical adviser, who, incidentally, felt it necessary to apologise for 'fellow members' of his profession. It was that expert who advised me against making a formal complaint against the paediatrician responsible, until Sophie is "safely out of his clutches", as he warned me that "these guys have very big cannons...... and lone mothers are seen as fair game". Disgraceful.
Anyway, getting back to your question re who is over all 'in charge' I wouldn't know now - there is NO relationship with the school, and the consultant has been 'sacked' from his responsibilities to Sophie, so I don't rreally know where that leaves us. Like I said, we are waiting for an alternative referral elsewhere, through the GP, who had originally been reluctant to remove Sophie from the existing 'care' until a new one was found, but then accepted our argument that Sophie was ALREADY without 'care', because she catagorically refuses to go back.
To my mind, the meeting in two weeks' time should be cancelled until she has a new team, but I just don't know. What I also don't know, is whether the bully of a paed. has already contacted social services, and they just intend to turn up at the meeting...............
Oh Gawd, I've written a book lol! Maybe that's what I should do! We'll emigrate, to a desert island, and I'll sit under a palm tree and write a book about it all!!!
I'm so grateful for all the support, thank you.
