Making a statement

After complaining in last week’s blog about getting no support recently, things have suddenly started moving forward. B’s SEYS worker visited us with a draft of the application for Statutory Assessment she is submitting. So finally we are moving towards getting the support we feel he needs.

This good news also brings with it a certain amount of anxiety though. If there’s one thing I’ve learnt so far it is that there are no certainties in getting support. SEYS have warned us that not only is getting support a challenge, but also that the level of support might not be what we hope for. I know a parent whose autistic daughter does not have a statement due to her academic ability. But to hear of the girl’s emotional and social difficulties, it seems absurd that she is not supported more. The Senco at the school I work in has, in the past, sat on statementing ‘panels’ and paints a fairly grim picture of the realities of how these things are dealt with. I also wonder to what extent we are at the mercy of budgets and quotas for our local authority. It’s absurd, isn’t it? To think that my child’s need for support might be dictated by how much funding is available.

The biggest fear weighing on my mind is that a panel will judge B’s needs not sufficient enough to warrent support. Or to put it another way, he is ‘not autistic enough’. I fear this because, apart from the obvious fact that he won’t get help, it says something about our ability to cope. Because, if I’m honest, coping is really bloody difficult sometimes. I know there are plenty of people with children with much greater needs. I know that many parent’s have much greater difficulties to face. But a refusal would suggest that we somehow are not as good at being parent’s to B as we should be. In my heart, I think it is harder than it should be, that for all it’s difficulties, parenting isn’t ‘normally’ this difficult. If the authorities deem B able to cope, does that mean we are somehow overreacting? Making more of this than it is? If B can go to school unsupported, why do we struggle so much to help him at home?

We have a similar situation with our application for DLA (disability living allowance). I have no idea if B qualifies for this, although the 48 page form my wife filled out seemed pretty convincing to me. If it is decided his needs do not qualify him for this support, it is like saying, “he’s fine, get over yourselves, it’s not as bad as you think it is.” Most of the time I feel strong in my convictions and confident that, as his parent, I know B better than anyone and that I’M RIGHT. But it’s not up to me.

So the process is as follows: SEYS will submit their application which will go before a panel next week). They will discuss the application and decide whether to proceed. The application has attached to it lots of evidence from SEYS, SALT, nursery etc. We have also written a supporting letter; once again we find ourselves focussing on all the things B can’t do, all the problems he has, all the difficulties he causes. And none of the reasons why he is a beautiful, wonderful child. The process forces you to look at the bad stuff and that can be difficult.

I’d rather spend my evenings thinking about all the positive qualities he has, all the progress he’s making. These are not the things that get a child a statement though. So for the sake of educational support and disablility living allowance, we find ourselves once again having to remind ourselves of everything he can’t do, the ways in which he struggles and even beginning to think ahead to future problems (something we’ve tried to avoid doing).

To end on a positive note, we heard today that SEYS have ‘found’ the funding to be able to offer B three and a half hours per week one to one support in nursery, which he attends three days a week. This is to help him work towards his IEP targets. Now this is not a huge amount of time, and will only last for his remaining nine weeks at nursery, but I think it sends a clear message about his needs. It shows that the very thing we are applying for via a statement is already regarded as a requirement. I think that is quite powerful as a an argument in favour of applying for a statement. Fingers crossed.

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5 Responses to Making a statement

  1. alexcparsons says:

    Tough times! I fear that your suspicion that the level of support offered will be influenced by current funding decisions is correct. Call me a cynic, but there ain’t many votes in disability, so they are an easy target for councils. Given your impressively thorough approach, it seems to me incredibly unlikely that you won’t get a statement and be offered some support, though.

    But I know exactly how you feel in worrying about coping. Michael (ASD/PDA) is our first child and, to some extent, we still have no frame of reference for what is normal; for years we seriously thought we were rubbish parents. Just as in your case, this is nonsense and you are not making up the very serious issues you and B face, day in, day out.

    So steel yourselves to be offered less and don’t give up pushing for what he needs. In a climate where they are looking to save on provision they will, like running water, take the path of least resistance. Your presentation of evidence etc. will (even subconsciously) give them pause for thought. Good luck!

  2. 2emummyuk says:

    Hi B’sdad I have just come across your blog after you posted about it on Mumsnet. I have also recently started a blog about my experiences as the mum of a daughter recently diagnosed as high gifted with Dyspraxia. It is refreshing to find another blog so open and honest about the challenges of parenting such a special child! Well done!

    • B's dad says:

      Thanks 2emummyuk for your kind words. I couldn’t access your blog. I’d like to take a look if that’s ok with you. Do you have a link?

  3. PoopyFingers says:

    What is your name on Mumsnet? We are having similar experiences with our son (nearly 4). Just thought I’d look up your posts – I am a frequent Mumsnet reader with the above name 🙂

    Your blog is great

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