Sunday, 24 July 2011

which came first?

Things are moving along.

Nenna has had a Speech and Language assessment; yep, there is 'delay'. No surprises there. We need to focus on small, useful words like 'more' and 'gone' so that she has a vocabulary that is useful to her. Fabulous Nursery* are very much on side - they do signing anyway and we are running to catch up with both them and her. She told her first sign joke last week; suggesting that there was a pig's tail in the Oxtail Soup.

I cried as well as laughed.

We have letters from Paediatrics, Physiotherapy and Speech & Language with their conclusions - I have sent copies of them off with the forty page application for Disability Living Allowance. Nursery are drawing down emergency funding for an 'additional adult' to be with her when she goes in to her peer group. At the moment, she is still in the 'Baby Room' with the under twos, because of her mobility issues. However, she is gradually integrating with the Big Girls, half an hour at a time, with adult supervision to prevent any ponking**. The aim is that by October half term, she will be fully integrated. I guess the 'additional adult' thing will be re-assessed as we go along, based on how she gets on. The referral for the MAISIE project is also in progress.

I feel that we are in the system; and now we are here, it is, actually, pretty good. We will have to see how it goes. I feel that despite all the crap, we have a very good professional support network, nursery is brilliant and our family are rallying round. It is just a case of waiting now, and seeing what transpires at the next Paediatric appointment, when they will do further blood tests to see if we can diagnose what is wrong or whether we just need to get our heads round it being 'just one of those things'.

In the meantime, Nenna is busy and happy. And the rest of us aren't too bad, either.

I am still not entirely happy with Leo's Posh Pre-School; they are, in my considered personal and professional opinion, a bit up themselves. I don't think it's appropriate to talk to parents in the same tone of voice as you talk to naughty toddlers. I don't like their complete inability to focus on anything that isn't written down. I don't like the fact that they have assessed a quarter of Leo's development milestones recently as six months behind his development milestones at Fabulous Nursery before Easter; and have therefore shot down any hope we had of getting him to start school this September rather than waiting another year. I don't like the fact that this was presented to us as a fait accompli and effectively bypassed any discussions we had had with the Headmistress of the school without telling us that we are entitled to an independent assessment by and Educational Psychologist as a right. I don't like the fact that they sent us a letter asking us to take him to hospital and get him tested to confirm or deny whether he was allergic to kiwi fruit; and phoned our health visitor to try to get her to involved; and threatened to make him sit at a separate table to eat his lunch if we didn't.

Actually, writing it all out like that, it's okay to be pissed off, isn't it?

Anyway. I have comforted myself with the thought that, actually, that is their lookout - if by November he is bored enough to start dismantling their setting, then they will have to deal with it and I will laugh at them. On a personal level, he is settling in very well and is starting to make friends. I am torn whether to move him back to Fabulous Nursery. I'm trying not to let my (very well concealed) irritation at them get in the way of doing what is best for Leo.

B and I have taken deep breaths and are taking the time to look after each other.

I have been asked to sell eggs fortnightly at Minehead Farmer's Market. I did the first one on Friday and I made a small profit. No-one was expecting an egg stall to be there, as their current egg seller dropped from weekly to fortnightly a while back. Also, it was absolutely torrenting down. So I am hoping that over the summer I can work it up to a decent amount. I enjoyed myself.

I think for now that is all.

* You know who you are!
** Bonking your nose on a tree

4 comments:

  1. Re the lovely Nenna and support for her - the help *is* out there. The problem is you have to be a pain in the ass of the bureaucracy to get it.

    Once you're in the system, the hardest work is done.

    I've been crap at keeping up so this may be something that already done but my best advice would be to get hold of a Social Worker. If I remember right it'll be the Children With Disabilities team. That's a hard thing to stomach, I know.

    The great things about them are:

    1. If they're in the Children With Disabilities team they actually care
    2. They'll know exactly what resources/support you're entitled to and will help you get it
    3. They can cut through some of the red Tape
    4. They're a sympathetic ear - which is a huge help. Sometimes it's easier to speak with someone who is one step removed.

    Hugs to all x

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  2. Thank you, Greg, I will follow that up if things seem to stall. The one thing I haven't heard about is the grommets, which were supposed to be happening at the end of August.

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  3. Sounds like things are good. Nenna and Leo are lucky to have so many people who care for them.

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