Well we've gone to the year 5 Transition Annual Statement Review and it's all looking fairly good for my daughter, she is progressing well, though her expressive language doesn't reflect her excellent knowledge. As usual the policies give me a headache and I'm a bit at a loss as to what I should be doing right now.
It took so long to even get noticed, by now we have cosily entered the world of supported learning through a language base and the statement reviews have been a reiteration of progression and how she is doing well etc. etc. but as the leglislation has changed so has the cosy safety net of the statemented legal requirement for her SLT.
Now come the problems again. We are switching to an EHC Plan, which has a whole load of question marks over it, not least of all is - will her languege needs now be overlooked, F's chronic condition of Specific Language Impairment, becomes 'manageable' now she is in mainstream. Yet again instead of wanting to look on the positive side, I'm going to have to delve into the 'what's wrong with her' psychological circle of hell. Yes, she is academically catching up, yes, she copes in a mainstream class with support now, but no, you wouldn't mistake her for a child without a problem if you met her. Because she still talks with a babyish cadence, with slow sentences as she tries to find the right word, gaps in her grammar that come out weirdly. She can't follow the class at the speed they go. She doesn't have a 'normal' conversation with children of her own age and in the two mainstream activities she does (Brownies and Youth Theatre) she has no buddies and is often conversing with adults rather than children. And if you take away her help, she still has an anxiety reaction that ranges from constipation, through to panic attacks and night terrors. Even the change in her routine last weekend (we had a long journey and I had picked her up early from her Dad's) started her 'needing the toilet when I don't need the toilet' anxious reaction.
And my fear is that as I approach having to justify all this to get her the SLT she needs in secondary school, I'm having to focus on the negative again. Just like when you do the DLA form and it makes you cry, because I am yet to do a DLA or help anyone with one without it becoming an emotional trauma.
I find it hard to cope with the jargon and policy, too much information seems to shut down my understanding. I feel helpless in the sight of all the timelines and pushing for support. I may be looking into getting a personal budget for the SLT needed in secondary school and first step I am told is to call Parent Partnerships who are now Information, Advice and Support. Except I invariably have to talk to the same woman who is far from supportive.
'Can I get a personal budget for SLT' I ask
'Not if it interferes with SEN support that the Local Authority has,' she says.
Now I know the school I want F to go to has no dedicated SLT and that is why I need to buy it in, so it would make sense to go down the personal budgets route. I wouldn't be asking if they did.
So I say 'Well what if they don't have it, can I get it then?'
'Not if the local authority does this and not if that and blah blah blah' she goes. She's lost me now, talking about all the 'not if the LA' things, none of which is going in. The information is irrelevant and unhelpful and I still have no idea if it is possible, how to go about it, what to do next, I ask but am just told about the timeline of the EHC Plan and how I might not get it anyway.
Finally she says, 'if all the criteria are there then yes, it would be possible.' But no practical help in actually what to do next. I will persevere, I will speak to the right people and find out, and I expect it will all be fine but I really really don't need the stress. Sometimes it feels as if the people trying to help are merely putting blocks in the way so you don't ask for more money or defy the authority of the Local Authority.
What saddens me is the professional teachers and SALT I deal with are wonderfully supportive, I'm an advocate for my daughter and would never ask for help if I didn't think it necessary, I'm not a sponger of benefits or a squeezer of budgets, I just want what she needs in order to operate in the world and become a fully functioning adult. If she had a broken leg and I was asking for crutches I wouldn't be getting 'Not if it interferes with the wheelchair provision' off some 'helpful' nurse. I would get the bloomin' crutches! (Mind you the way it's going with the NHS.....)
I think the worst thing of all of this isn't the condition in itself, it's the hoops and the politics you have to fight your way through in order to get the provision your child needs. I keep reminding myself, I'm lucky, I haven't had to go to tribunal, I got a statement, she is improving, she is finding her way in the world.
All I want to do is make it possible for my daughter to go to her local, very well thought of in SEN, school. That shouldn't really be that much of a headache should it? So I'm going to look into the personal budgets rigmarole and report what happens.
I have already looked at the Local Offer online for our area and yes it says on it that you can get personal budgets, it doesn't say how, it doesn't give you any info on what to do practically. I'll have another look and see.
We will be having a talk at her school about EHC Plans, so hopefully that will shed more light as well, but for now it's back to searching for the information, objectively, and practicing my Zen meditation to not get too wound up in the process. And I'm not ringing up that unhelpful disinformation service again!
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