Busyknitter

One of these days the Department of Work and Pensions will cotton onto the fact that Ted’s autism actually isn’t going to go away and let me off filling in those ghastly forms every two or three years.

T and I had another fun trip to Greenbelt this year.

I did manage to get to a talk or two (thanks to brother stepping in with a spot of childcare when desperately needed ) but my best bits were all musical ones with the littl’un in tow, particularly anything involving singing; We did the Big Sing, the Wee Sing, the tail end of Beer&Hymns and the Tim Hughes worship (which the little fella really, really enjoyed).

I didn’t mind that we couldn’t get into the actual beer tent for the singing. It was just as much fun outside, being conducted by one of the crusader guys.

I’m sorry to say that the Sunday service was dull, too specifically political, hardly mentioned God let alone Jesus and the songs turned into a farce.

Most of the rest of the time was spent mooching around the site, chatting to folk, drinking tea and bobbing into gigs for 10 minute chunks.

My big find of the weekend was the Welcome Wagon, who as another friend has put it are my new favorite band. Would have liked to have seen Shlomo, but didn’t manage to get there.

Would also have liked to have gone to a Rob Bell talk, but I bought the book instead. In fact I am very pleased with my haul of books this year; currently reading “Heresies and How to Avoid Them” by Ben Quash and Michael Ward.

The bit that wasn’t so good for us was the disabled camping. We must have struck lucky last year, because then we were pitched on the narrow strip of grass direcly facing the grandstand. Though it’s quite close to the main festival areas, it was actually pretty quiet there and that worked for us brilliantly.

However, this year, all those pitches had been bagged by the time we arrived, so we found ourselves in the main disabled camping zone, which I am sure would have been really convenient for wheelchair users and people with mobility issues, but was a complete nightmare for us. It was cramped and noisy more or less round the clock and to make matters worse we found ourselves camped two feet away from a main thoroughfare to all the other camping areas, with hundreds of people tramping past more or less continually. and chatting. loudly.

This meant that my son spent a good hour or so very distressed late at night, finally dropped off to sleep around 12.30am and woke up again at about 7. That’s not enough kip for a 7 year old. And certainly not enough kip for me!

We stuck it out for two nights, but on the Sunday almost sick with exhaustion, I bailed and checked us into a hotel in Gloucester. I wouldn’t have been able to drive home safely on Monday otherwise.

Of course camping at a festival is always going to be a bit rough and ready, but it would have been nice to have been able to reserve a place in the same area that we had last year. There was a special zone for deaf greenbelters after all. Will need to think hard about arrangements for next year.

Ted’s end of year report came home yesterday and with it his “End of Key Stage 1 Teacher Assessment” results:

Speaking and Listening W
Reading W
Writing W
Mathematics W
Science W

(ps, “W” means working below Level 1)

It’s good to see that having a profound learning disability does not bar one from the opportunity to participate in this keystone of the government’s educational policy.

Able to whistle two notes at once
Can eat 2lb grapes at a sitting
Resistant to all known forms of hair cutting
Strong enough to pull a radiator off a wall

Nearly a year ago I posted this about how T managed to destroy all the furniture in his room and we’d started to ask about some specialist furniture being fitted. Well, the wheels of health/social care bureaucracy do grind exceeding slow, but we got there in the end and here is T’s beautiful new bed;

And our lockable bathroom cabinet.

DoublePlusGood

What can I say, we had a completely awesome time. Huge thanks to my good friend who came to help out with T; couldn’t have done it without you. It was also great to spend some time with my brother, who is a Greenbelt old lag (compared to me that is)

As for the little fella, he loved it! Quite the little autistic party animal he was. He especially enjoyed any event with music.

As Greenbelt newbie, it took me a day or so to work out what was going on and when. But we still did loads. Beer’n Hymns was a particular highlight (two nights in a row!) As was a talk by John Swinton on the theology of disability. Also one by a bloke who walked the entire route of the M62 and wrote a book and a blog about it. And then there was the Taize worship. And the dinner I had from the Pie Minister stall (almost a religious experience in itself). Oh, and the Iona Big Sing. I could go on.

Camping with T was not too bad at all. The first night’s sleep was a bit rubbish; we went to bed at 1am and T woke us up before 4 and that was that. But Saturday and Sunday were a lot better.

And I spent a small fortune on books

Here’s a few pictures. There will be more on facebook.

Here are some piccies from our week away.

The House

The Pool

Inside

A very jolly time was had by all

Took T to the church holiday club for a little while in the morning. I couldn’t leave him there as they aren’t set up with enough workers to give him the attention (but I think I will start asking for them to lay something on next year).

He really enjoyed it. When we arrived, there was just one chair placed in the middle of the school hall with all the activity going on around it. T plonked himself in the chair as if he were waiting for church or school assembly to start and just sat there happily waiting. It was very sweet.

Then some girly shopping; face cream, mascara and a new nail varnish. I also got collared in the street by someone flogging a promotion for a local hair salon and Oh My Goodness I signed up for it (which is quite out of character). essentially I’ve prepaid for six months worth of hair treatments – cuts colour, head massages, styling etc. If I use everything, i’ll have paid £55 for £350 of treatment. Now I know I won’t do that, but even if i get two cuts and a colour out of the deal, I’ll be quids in. They’d better be good.

And here is some free advertising for them Spencer Hair Company

T’s respite carer thinks he is starting to echo back simple phrases that people say to him.

Watched the Ingmar Bergman movie in the afternoon.

Carried on working in the evening. It’s very dull but I am making good progress with what i need to do.

Ooh, and I made a huge batch of cauliflower cheese for tea and the freezer. Though i say so myself, I make the best cauli cheese on this planet.

Not much reading going on this week, though I have finished Buddenbrooks at last (Poor Hanno!). Must look out a good stock of books to take away next week.

I have a sore throat.

Husband and older son plus my Mum have toodled off to Paris for a short autism-free break, leaving me and and the little fella at home. We have no grand plans because we are off to the Isle of Wight on Saturday.

I thought I’d keep a daily diary of our very quiet week at home. Here’s what we did yesterday:

Good Bits
-T enjoyed his first visit to his respite carer in a while (she’s been on holiday herself). She’s recently moved house but is still very close to us.
-While T was out, I spent the whole afternoon messing around learning to cook a new curry – chicken dhansak, mmm-mmnn.
-We cycled to the pool and had a very relaxing swim.
-Overnight I taped a ridiculously long Ingmar Bergman movie off Channel 4 to watch over the week – Scenes from a Marriage

Bad bits
- Have you any idea of the horrible mess that can be made by an autistic boy in search of sensory fun armed with only two slightly overrripe bananas?
-I spent the whole evening working, grrrr.
-correction, I spent the first part of the evening struggling to work with my underpowered laptop then gave up and moved onto husband’s smart games oriented PC (I’m going to have to do something about this in the autumn).

T is up to his old tricks. It’s 11pm, he’s been officially “in bed” for four hours now but he’s nowhere near asleep.

And he’s back in furniture removal mode. Well, there isn’t actually any furniture in his room except for a mattress, but I’ve just been up there to check on him and found it on the other side of the (fairly large) room.

Never mind; hopefully we will soon have his new bed installed and fixed to the floor (made by these folks). That’ll settle his hash.

Wish he’d go to sleep a bit earlier though, he’ll be impossible to wake in the morning.