My little rant yesterday seems to have hit a few chords – and I have to say I do love to get comments here, so don’t be shy!
I have been busy in the last few days trying to rationalise Little Man’s various special needs. We have been hobbling along managing his care for the last ten years, and I have hit something of a wall. As lovely as his professionals are, they are failing him because they are being lazy. They each look to their speciality, and try to find the simplest answer to a rather complicated little person. And the thought of getting together doesn’t seem to have entered any of their heads.
Enough is enough. I don’t know how or when, but I’m getting them around a table, even if it’s a virtual one aided by skype or some such technology. And I’m leading it. Oooh, that’s going to get some heads buzzing!!!! They are not going to like that one little bit. But you see, this is the extent of the situation:
Even if you can’t read the tiny writing (I just can’t spend hours figuring out how to turn a powerpoint diagram into a picture file wordpress likes I’m afraid!), know that the centre circle is my darling boy. Each and every other circle represents a professional. The few that have dashed lines are ones that have not seen him for a while or have discharged him… and as I write this I’ve realised that I’ve missed one out. There are 20 – 25 of these circles.
So I somehow need to sit all of these people down at the same time so that they all hear what I have to say simultaneously, and so that they are given the opportunity to brainstorm why my little boy is not well and how best to look after him!
For each of these circles I’ve created a diagram with existing diagnoses and treatment, name of professionals and frequency of visits, together with the questions I’d like answered in order to make him better. It’s been a labour of love, and has required a certain will of iron. I’m going to give each of them the full document in the next few weeks and months with a covering letter so that they can prepare themselves. And I am not wearing rose tinted glasses. If we are able to make this meeting happen in the next year it will be a miracle!
As an aside, this document is also going into Tom’s new EHCP… the government’s new system for special needs. I’m hoping that the weight of the really lovely people driving this new system in our area will make a difference.
And to finish, this is what Tom would like his life to look like:
Hope you can read it… As ever, I’ll publish, then make lots of little changes as to how it looks!