Just keep swimming

We had our mediation session with the LA scheduled for yesterday afternoon following their refusal to issue Katie with an EHCP. It wasn’t ideal that it was the first day of the Christmas holidays in our area so Katie’s head teacher wasn’t available and neither was anyone from SENDIAS (As a side note, apart from taking longer than the 5 days they aim for to get back to me SENDIAS was really helpful in terms of reading the notes I’d prepared and giving feedback. It’s another area struggling with lack of funding. In our region there is one person dealing with all the primary school issues and one person dealing with all the secondary school issues and that’s it). But my friend / manager was free for moral support and to take notes and I was half dreading it and half looking forward to actually being able to make our argument face to face with the LA instead of through all their passive aggressive emails and refusals.

The LA emailed a few days ago to say that the panel had reconsidered our case and decided that they would issue an EHCP after all, so the mediation was cancelled. Or in the words of Global Mediation “Case Resolved – LA Conceded”, which sounds good to me!

At the risk of being cynical I’m assuming this is just the start of another fight. The LA says they will write a draft “as soon as reasonably possible” so who knows what that means and presumably I’ll be chasing them up on that. So far the LA haven’t shown themselves to be very good at reading reports or acknowledging relevant information so I’m guessing the draft will be woolly and missing a load of accommodations and we’ll be going backwards and forwards to get a decent EHCP in place. I’ve heard lots of stories of LAs finalising the EHCP even when the parents have refused to sign off on the draft because it’s not right, or of having to go back to tribunal.

BUT at least after a year of wrangling we’ve finally got confirmation that Katie will get an EHCP. One battle done.

She also had her CAMHS assessment on Monday after nearly 2 years of waiting. She wouldn’t look at the psychologist and didn’t say a word the whole time we were there. But at least I’ll finally have a CAMHS report and some paperwork to give to the LA and that’s all they seem to care about. CAMHS said they can offer Katie some CBT and she is a priority but it’s still another 9 month wait for that to start. Our local MP has been fairly vocal about trying to get CAMHS waiting times down and I keep being told it’s the parents who shout the loudest and make a nuisance of themselves that get anywhere, so I contacted her about our experience so far. She’s actually been quite helpful and raised it with the Trust as well as asking if we felt the wait for CAMHS had affected any other areas such as education. So I said yes I think it’s caused delays in getting accommodations in place and hasn’t helped us with trying to get the EHCP and she said if we want her to raise concerns with the council’s Head of Education Services then let her know.

So that’s a fair bit of positive progress over the last week or so, and I hate to be negative but I don’t really feel better about things. At the root of everything we still have a 10 year old who is big time struggling, help that’s been promised but with no clear time line, and a family unit that isn’t functioning very well. Katie is completely burnt out and can’t cope with any demands at all, even picking a coat up off the floor or getting dressed or going to get the other two from school, without either just refusing to do it or a load of negotiation needed. She has all of the attention all of the time and Alice and Matthew just get left to their own devices. I don’t feel that kids should necessarily have equal amounts of everything because it depends on their personalities and needs, but while Katie needs the attention she’s getting it’s not fair on Alice and Matthew either. It’s impossible to balance their needs because Katie just wants quiet and to be left alone (but not actually alone, she wants to be with me or John all the time), and Alice and Matthew want to be running around and playing and doing Christmassy things but Katie can’t manage that. I try and keep them all happy and all that ends up happening is that no one is happy.

When I was pregnant with Katie my mum said to me that her and my step dad thought being a mum would be the making of me. It was a really positive and reassuring thing to hear, and I was quietly confident and agreed with them. I always wanted to have kids and I had a good example to follow in my mum. I love my three so much and it’s really hard that I’m not the mum to them that my mum was to me. I really only have good things to say about my childhood and I don’t think Katie, Alice and Matthew would say the same. I wonder if something happened to me how they would remember me. Grumpy, tired, boring, snappy? Or how they will look back on these days. Katie is desperately unhappy, misunderstood and angry. Alice is scared of her big sister, lacking in self esteem and constantly overlooked. Matthew just seems fairly bemused at the constant drama. I’m slogging my guts out every day and doing my best and it’s not even close to good enough. Reading, researching, asking, demanding, arguing, trying, emailing, phoning, waiting…everything is painfully slow and Katie’s emotional health just gets worse and home life gets harder. I wonder how, when and if things will get better.

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