At our last panel meeting a few weeks ago, the decision was made that an external agency (that has had nothing to do with Jude his entire life) needs to write a behaviour report on him. Yes, you read that correctly. Someone who has never met Jude, is to write a report on him. To say I was furious is an understatement. Why wait all this time before involving a supporting organisation when they could have mentioned this RIGHT AT THE BEGINNING when it may have been incredibly helpful?
Today, I had my first meeting with my designated person (Sorry, I can’t remember their title but I doubt it’ll be better than the Gatekeeper or whatever it was within the council all that time ago) within PALMS, the agency mentioned above.
Now, I know i’m cynical. I think it has come from years of being patronised by some professionals, random people we encounter on the street, Paediatricians, that horrid Physio I fell out with when Jude was only five who sent me a rude letter stating that Jude was able to walk so not welcome to physio.
I meet people who are sent to help me and immediately my barrier goes up and I assume they are there to attack in some way. In fairness to everyone in our current team of support, I no longer get this. It was all in the past but you know when something has bothered you and your confidence has been dented so many times, it takes a lot to resume that trusting demeanour. I don’t trust people at the best of times but especially when a) they are from the council and b) they are lining up to tell me how to cope with Jude at home. Such as during the meeting today.
So there I sat, cynical hat firmly on my head…a thirty six year old mother of three, been through quite a lot of crap in my life and feel I’ve survived pretty well. Opposite me are two ladies who can’t be more than twenty five each. One referred to her younger sibling when I mentioned Jude and immediately I could feel the shutters closing in and my defence mechanism kicking in.
Firstly, they asked for a few details about Jude. Sleeping habits, eating patterns, what school is he at, etc. Then we went over the three targets I had made during my initial assessment a month ago. My targets were made in a rather hurried, “I want out of this situation” kind of way. I decided that the only targets I could think of that were vaguely viable for our family life were the following:
1) For Jude to cope better with transitions
2) For Jude to not have a melt down every time Emmeline cries.
3) For Jude to sleep better at night.
We discussed each one and to say I was frustrated is an understatement. You know when you’re in that really awkward situation where you know the entire thing is completely pointless but you don’t want to appear rude? Well, that was me today. I was asked if I felt Jude was coping better with transitions since my last meeting. I explained that Jude isn’t coping better in any way whatsoever. I tried to elaborate on Jude’s level of cognition; that he doesn’t even know what day of the week it is let alone have the ability to understand concepts of time and routines. One of the ladies asked how Jude displays his unhappiness and I said that he paces around, starts throwing things as his anxiety builds and the only way I can describe his behaviour is that of a ticking time bomb; he gets more and more manic before exploding into a screaming, kicking mess on the floor.
I was asked if I talk to Jude after these meltdowns for which I said, of course I did. The lady enquired as to how Jude verbalised how he felt following one of these episodes and AGAIN I referred back to Jude’s comprehension and his inability to elaborate on his emotions through words. I even said that Jude wouldn’t even understand the question of how he felt or why he did something. I doubt he’d even remember what he did.
It was so frustrating. I went back and forth repeating the same things. In the end, I tried to be blunter with my answers and I even stated that I have no idea how we can go about creating targets for a child like Jude as he wouldn’t be able to understand them, let alone simple instructions as he forgets everything within minutes.
I know from reading the above, I sound like I came across rude but I really didn’t. I’ve just been to so many meetings about Jude that I find it incredibly annoying when i’m sent somewhere that is a total waste of my (and their) time.
I’m really angry that the panel have made me go backwards like this. Perhaps a few years ago, PALMS would have been a great route to take as they may have been able to help us cope a lot better on this road we have been bumping along for such a long time. Even earlier perhaps – I needed coping mechanisms when Jude was five, why didn’t anyone offer me PALMS intervention then!?
I’m also really angry that this stalling technique of the panel has caused me to have to drag over old information which I actually find really upsetting. When you first visit a professional in a new department you obviously have to give a level of information that they can build on. I don’t mind this at all, naturally they want to hear it from you as well as read the reports. BUT I haven’t had to do this for a long time now as our little network, our little Jude team, have been so wonderful recently and I’ve felt we have moved forwards in leaps and bounds. To have to rehash Jude’s habits and history, just because the panel want to delay the inevitable is not pleasant and I resent the panel a great deal for not even taking this into account when they made their decision last time.
We are back with the panel on Monday 14th August. All the reports are going back to them, the acceptance letter from the residential school I love so much (yayyy, they want him!) plus the recommendations from my Social Worker and SEN Officers. Basically everyone thinks the school I love is the best place for Jude. No day place schools have said they can meet his needs and it has been written in black and white that the routine of a day school doesn’t cater for Jude’s requirements.
I feel like it’s our last chance of getting him into that school and whilst I can’t see how they can say no this time, I don’t trust the council at all. I don’t want to jinx it by telling you about the school in detail but if they say yes on Monday then I’ll let you know why I love it so much.
Fingers crossed next Monday please xx