total bloody drama - the only predictable thing is the unpredictability of Tom

Went to Bystock to pick Tom up Monday, we fly 11.30 this Tuesday morning. 

We got there and Tom was having lunch with the lorry drivers up in the tea shed, he had unpacked his bag (which he had packed last Thursday) and told everyone he had an upset stomach. Just the previous day he had been excitedly telling everyone he was going to meet Lars, and now he didn't want to anymore. He avoided us like the plague; Will and I knew not to get angry, but I kind of wish I had, because we aimlessly drifted around, Tom getting more and more removed and aloof and disengaged with us, while the time slipped away tick tock, only 18 hours til we fly and Tom has unpacked his bag and claimed there is too much work in the paper shed and he can't go away.

Will went and worked on him for a bit.

No joy. In fact Tom locked the door to his room and told us, politely, to go away.

The whole place was abuzz with his holiday and now it was even more abuzz with his refusal to go.

Tom had done a disappearing act. Thankfully, for he does not always, he stayed within Bystock Grounds and was reasonably findable. He kept popping up, he's be, say, drinking a cup of tea, I would gently go to join him and broach the subject of maybe getting in the car to go and see Dad, half way in Bristol.

Nope. Then he'd stand up and walk away.

Around 5pm, after I had rung Virgin to see if they could move our flights forward a day or two (not looking terribly likely currently), I went up and said through his door, 'Tom, Will n I we've busted our asses to make this happen, we've given up paid work and generally exhausted ourselves in the pursuit of your hearts desire. That's not very nice. I'm going to go away for a while and let you think about this. Goodbye.' 

An hour later after another vile cellophane wrapped 'meal' from a garage/supermarket I went upstairs and his room was no longer locked. I went in and we spoke nicely to each other. After about 20 minutes my stepmum turned up, Tom's a little bit scared of Janie. She is what I refer to as, 'the big guns', and this does not refer to her muscles. She simply knows how to make Tom do things. We chatted about the brothers and sisters and about Dad's poorly knee, about the new log burner at my Dad's house and their neighbours new bathroom.

Within 30 minutes he was in the car.

As I type Tom and Will are asleep at Dad's house in Bristol. I drove the car back to Will's wife, who had packed him and bag and bundled up his passport etc. We are meeting at the airport at 9am. 

What happens next, I don't know. But I know I need to sleep.

I will keep this regularly updated on the road.

Thanks for being interested xx

Steev Toth

The Mission to Lars started today next to a tea shack on the A39 to Minehead, we were on our way to see a guy called Steev Toth who has been a sound engineer and tour manager for bands including The Cure, Erasure, Alice Cooper, Fun Loving Criminals, Crade of Filth and Depeche Mode. We'd stopped for tea at PJ's Hotspot in a layby and Will went, "I guess our roadtrips started." Tom was laughing and happy; I knew, once the fundraising party was over, I'd be feeling the same way too.
Steev's recently divorced and lives with his quiz mad Mum, his son, Storm, and a couple of cats in a small village near the Quantocks. He'd just got back from a tour in Japan and he had tour manager written all over him. Full of mental rock n roll stories, drug tales to make your eyes pop out your head, and an absolute softie. You couldn't make a character like that up, he was perfect.
He was really sweet with Tom.
Tom loved the stories about how Steev has to herd naughty rock stars into bed and how they have rules on tour buses about no smelly feet and no farting.
He gave us some excellent ideas for tour bus living, our Winnebago in LA is kind of like our tour bus now. He gave us some excellent advice about how to get backstage at gigs, and how to not be a boring fan when you meet your heroes. His son Storm made an excellent cup of tea. Tom did the whole interview wearing a luminous yellow reflective jacket. Don't ask me why. That was the style he was dropping today.
Tom's excited about the film now, and about the trip. The challenges are there and real, but he's already packed and ready to go. Janet, the manager at Bystock has got his cash money and the one dollar the bloke at the pub that Tom goes to sometimes, took off the wall at the pub and gave Tom the other night when we went for pints and pork scratchings.
I've just got to get through the party tomorrow, which caused all manner of hullaballoo today as I tried to shoehorn party planning into a full days filming. I'm having this party with some of my favourite women ever; big personalities, and we've managed to get through the whole thing without one fight. But today, the day before lift off, there was simmering potential for lady punch ups over the seating plan which I've been obsessing over for the last three days.
We nearly had no wine because I forgot to give delivery advice to the wine sponsor, Journeys End, I was hurtling down the M5 talking to Journey's End's owner, Rollo Gabb (who throws the best parties ever at his family home, Stanley), who said, you've got exactly 8 minutes to sort this out.
I've got to go to bed. Or my head's gonna explode, it's been a long day, I had a hangover, and we drove hundreds of miles. If we hadn't drunk gallons of tea I don't think we'd have made it.

Enter Sandman Metallica, Moscow 1991

The genius illustrator Will Broome posted this tune up on my Facebook last night: 


You can't really fail to like it, the energy, the footage and the general hair dedication, the music's pretty faultless of its style. It's like Motorhead's Ace of Spades, everyone, but EVERYONE, even all the metal haters out there, LOVE IT. After 40 years of 'popular' Soviet rock - which barely qualified as a 10p tub of margarine compared to the English speaking West's French hand-churned by virgin's premium heavy metal butter. Moscow in 1991 must've needed Metallica like a starving man needs McDonalds.

Wow, laboured that metaphor to the max, didnI?

I am sleep deprived and a little overstressed, but watching that a tear came to my cynical eye. I know that Tom loves Metallica's music, his cds are all ragged and curled at the edges and when Will gave him a massive Metallica box set of cds he just used to sit 2 inches from the TV watching it and being really fucking happy. It's great that music can do that to you. I know art's great and all that, but can you get off on Van Gogh or Jeff Koons in quite the same way?

When we took Tom to see Metallica at O2 (Thanks Frank, for the box, there's no way he would have ever got in that crowd), once we had coaxed and tempted him with a trail of Stella's from the Thames to the door of the box, and fed him fish and chips, and sat quietly with him listening to him saying he was ill, that he didn't like Metallica anymore, that he was, "Sorry Kate", because he knew we'd all bent over backwards to make his dream of seeing Metallica come true, and now he was sitting there, outside the box, fucking terrified of the noise, the people, the place, the colours, the sounds, the onslaught of sensory stuff that his Fragile X mind was incapable of processing in the way we do.

Neil Mather, a tour manager for people like The Stone Roses, the Happy Mondays, and thankfully for him now, a slightly more manageable, Snow Patrol, walked past our little crew of Tom outside the box. Neil was just lovely with Tom, he just said a couple of things, but you could see Tom's confidence building a little. Frank was really cool. Neil and Frank are two guys who I wouldn't describe as girl's men. But seeing how easy and gentle and normal they were with Tom was great. (Tom needs men around him, not just women with their phenomenal capacity to care but their ability to patronise and mollycoddle a bit too).

Anyway, that's a long story, the one about getting Tom from Devon to the front of a box at the O2 covered in an entire body smile that only comes about when feel music you fucking love, live. I've got to stop on this now because the memory of it is actually making my eyes water and my throat contract and that's not very good at 9.28am. I need tea, fast.

That gig was amazing. There's some video footage (and note to self - do not try to headbang, you have not done it since you were 13, and you are rubbish at it) and you can see all the siblings rocking out together in their own style. Bonding.

Yes, even me, with synthesisers in my soul (bit worrying that, could they block an artery?) and obsession with Prefab Sprout and 70/80s MOR from Supertramp to Fleetwood Mac, and early days of tweeny rebellion spent in a Sheffield of early New Romantics (pre-Dare Human League) and guitars only really figuring large when I listened to the Smiths or Pink Floyd. Yes, even I loved that gig. Metallica deliver the proper goods.

Moments like this remind me what the Mission's All About. Fundamentally, as Tom would says, it's about getting Tom close to something we all love: "HEAVY NOISE"

All I have left to do is this, posted to Facebook by Rich Wearz:  \m/(>_<)\m/

email from New York...

...Lars has personally given our meet n greet with Tom the nod, now it's all down to Tom to break through his syndrome and his fears, and down to me and Will to hold his hand in the right way, and for us to Little Miss Sunshine (minus the corpse) muddle our way through California, Nevada and Idaho to meet his eternal request.
He has already started talking about wanting Lars to come to our house for shepherds pie. I'm sorry brother, that really is beyond your siblings human remit.
Now we just need to get him on that plane.
It is never plain sailing with Thomas Spicer

our fate lies in this man's hands

Cliff Bernstein, owner of Metallica's management, clearly has a soft cornered heart, fingers crossed

Intents news

The beautiful men at ETA have lent us their indoor yurts. Which means we'll be just a little bit like a Glastonbury that you can wear high heels to.  There will be a dance tent, a church of the jevil tent and a lost in beauty parlour tent, all inside the studios, and looking something roughly like this. just trying to set up all the interviews, gigs and STUFF in general in the US and am furrrrrr-eeeeek-in out x

24 hours, ignorance

that blog was a bit mean tired and defensive, i'm going to write it right now...

Bystock Bedding

I just love the logo for Bystock Bedding, of a horse lying back in cosy delight reading a newspaper. This is what Tom makes at his work. In a way, Tom and I are in the same business, I write the stuff, which he then later shreds to make a comfy bed for ponies. Like chip wrappers, but better.

this girl's been amazing - LADY VIP

when you are coming from nowhere with nothing and someone good is just there behind you the whole time, well that's give you cajones. Thanks Vicky. She's Djing 11 til 1 on Saturday. Thank you Lady x

can i embed tunes

http://www.youtube.com/watch?v=X2hvkiuxRAE

The Papershed boys and other tales

We spent two days down at Bystock last week, I've never hung round there longer than a few hours and it was great to get to know my brother's home better. It's a massive house, Victorian I think, and kind of like a very chilled, comfortable boarding school. They've got loads of chickens and three alpacas, the craft centre sometimes sell bits and pieces, and Bystock eggs have good yellow yolks. The second unit cameraman, Lee, bought his girlfriend a kitschy cat door stopper for £4.

Tom works in the paper shed - when he feels like it, he does like a loaf, as do I, it's why I work for myself -  where they make animal bedding, very popular with horses, out of old newspapers.

We arrived and went to find him pulling plastic and cds out of newspaper supplements, he was busy at work and pretty proud for us to see him with his work gang, "The papershed boys" he calls them. Tom loves a good gang. Instead of going back to the house for a proper lunch, just like Ma makes, Tom prefers to make himself sandwiches and eat with the lorry drivers and manual work bosses in a drafty room off the end of the wood work shop. Tom has always preferred the company of 'normal' people.

I went and joined him over lunch - he gave Will a sandwich, but not me, but I ate his crisps to teach him a lesson he'll never forget. He forces the blokes to have one of Tom's beloved 'meetings' during their lunch hour, raising issues such as the lorry being a mess and needing a new van. He writes the minutes in his binary code style alphabet, 10001100011000. My Granny wrote like this in the days before she died. Nothing evokes the simple workings of the machine of the mind like the binary form.

Watching this I felt this all-too-familiar surge of protectiveness which I haven't felt for a while, I guess because mostly I have seen Tom around family, in private spaces, where everyone is a known and trusted commodity. It's a weird form of protectiveness because it comes in a none too comfortable guise. It goes like this: I don't want Tom to impose on people and bore them, because, not really that I care about the people, but I care about how people think about Tom, I hate the thought of people not liking or wanting him there. When things like this happen my whole head becomes eyes scanning the reactions of people in the room, I am prickly sensitive to any crabby vibrations.

However, I doubt Tom notices, even if people do feel this sometimes, which I really hope they don't, because if you breathe, calm down and open your heart, every level of human intelligence has a place in the world, and a place in your world. I was round at someone's house the other night, and admittedly I was a bit drunk, but the owner of the house really, really, didn't want me there. I was the last to know, when my mates told me, as we left. So, ignorance is bliss...

Anyway, I divert. Everyone at Bystock is lovely and I doubt the lunch box crowd are actually thinking bad things. The managers of Bystock choose all their staff, from top to bottom, on the strength of their capacity for care, patience and kindness.

Won't bang on. More later.

Mission to Lars animation

Mission to Lars party - a lot of very amazing people doing very amazing shit for free

Thanks to my girlfriends, Kim Machray, Elaine Foran, Tiff Darke, Stacey Duiguid. To Amy Spicer at Sculptivate for dressing the place; to Arthur Baker, Dixon Brothers, Cicada and Lady VIP for DJing, and thanks to many many more, mostly listed below

PS I wanted this post to look fly, but it looks shit because my graphic design skills are almost as legendary as my DJing skills.

AND...

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Bystock Court

We went to spend some time with Tom for the last two days at his home, Bystock Court. I've just got back and it's been two really long days so I'm just going to throw up some pictures of Bystock and a few words from them on what they do. The visit was deeply cockle-warming, an education in many ways, and spending so much time here made me realise what a nice home this is for Tom. Even though we were working hard, we had a laugh. Tom seems to have managed to reinvent his job so that he can spend an awful lot of time making cups of tea for everyone. Clever work brother...

'Bystock Court is currently registered with CQC as a home for 41 men and women (18+ years) with learning disabilities.'

 'Our aim at Bystock Court is to provide a supportive, happy and secure home for all our residents where they will be encouraged and helped to develop their self-esteem, confidence, abilities and friendships at their own pace.'

 

'Bystock Court is a working community and each resident, or day care client, has a job to do. They work from 9 a.m. to 5 p.m. Monday to Friday, but have time off for shopping, swimming and other outings.'

'We offer a choice of work, which at present includes, farming, gardening, newspaper recycling, woodwork,cooking, laundry and housework, and a general craft workshop. A Work Unit Manager supervises each unit.'

'The purpose of all the work units is to provide an enjoyable occupation and real work experience for our residents. Each resident is encouraged to do as much as possible for themselves and are actively encouraged to learn new skills. They take great pride in their standard of work and the high quality of the finished product, all of which leads to increased self-esteem and personal dignity.'

Our really first proper day of filming, hopefully my last day of stoopid panic

I slept about 3 hours last night, woke at 4am with my mind racing and it didn't stop racing til Will turned up to start our first day of proper on the road filming. The frets that were coursing through my brain covered everything, from the fact I should stop drinking caffeine to the fear that my cough is in fact lung cancer. In between these opposite ends of the spectrum were largely worries about the film: will i go bankrupt? will it be shit? will it belittle tom and make me and will look like gigantic ARSES, are we underqualified and overconfident (in truth no problem there, many films are made be the under/over crew), worse are we underqualified and underconfident, can we make Tom work under these insane conditions, how am I going to get the money pledged turned into money in the bank; how can we possibly make the film on such a low budget, is the increasing move on line by newspapers going to mean that I am effectively out of a job by the end of the decade, will i ever get over how much of a massive spin out i had at the weekend (IN PUBLIC), what do we do if tom refuses to come at the airport, am i experiencing middle aged spread, what if i never sleep again, and how come William appears to have no respect for me. don't get me started on the bloody party: what if no one comes, what if the party costs more than our party budget, what if what if what if.
my eyes were like mashed strawberry jelly by the time i got off to sleep round 6.50am. At 7am William turned up with the camera rolling...
Basically I am really stressed out.
And then today happened, we drove down to Bystock to see Tom and to start the Mission to Lars in earnest, and as soon as I saw him, despite still in a state of sleep deprived wiggage, I knew we were doing a bloody brilliant thing. Yes, there are some complex challenges ahead, but if you just stop, breathe, think, care, be yourself, be kind, believe, all will be fine. It helped that Tom made us all, the whole crew (Will, Tom, James and Lee and me) a nice cup of tea and took us all into the ballroom at Bystock for, "A meeting."

Tom loves a meeting.

So much good stuff happened today after such a wibbly wobbly start... I don't really know where to start.

But being rather short of sleep, I'm going to keep this back for tomorrow when I'll be truly back in the happy room and out of this phase of hairy, but always essential, doubt.

Mission to Lars is launched, proper. Tom's in (although he could decide not to be at any time, but it's our job to keep him on course and feeling safe), we're all so deep in we would be beyond bereft to give up. And...more tomorrow. Got. To. Sleep.

We might not have found Lars Ulrich, but we've found Alan Hope

And as well as being one of Tom's ex-heroes, he's leader of the Monster Raving Loony Party too. Along with his Cat: Cat Mandu

Oh man, more issues. And a link to something funny about Lars Ulrich

I rang the woman from Sibs today, the Sibling charity. I have to say I wasn't feeling it a great deal, I've just got on with things really and she talked for England and the rest of Europe, but their were key things that I picked up in her conversation that rang very true for me when I was a kid:
Not getting any information from parents; only being told off for not treating your brother with extra special tolerance.
Not knowing it, but knowing it deep down, that your parents were quite stressed by everything
Feeling freaked out because you are teased at school, stared at in the street or worried about what people might do to your sibling
So that reduces it down to a few short lines
Personally, I'd forgotten about this, what I have never forgotten about is quite how absolutely vile and horrid I was to my brother, including, once, threatening him with a knife because I could not make him behave. Even writing this shit is giving me some really bad feelings. There is no way that a kid can cope with a kid that's fairly out of control and whose behaviour is not really understandable. If we'd known more about Tom's condition when he was young then we could have been careful around him and made sure not to do things that he seriously never would be able to cope with.

So, there's a big heap of shit here, I could write for hours but I won't because it's beginning to feel like group fuckin therapy here, and actually I am just trying to arrive at a good place to move on to the next stage of our road trip, which is essentially about doing something special for Tom.

It's good I've got this blog here to mull this shit over in my head, because without it I'd just rush in like i always did as a kid, pushing Tom into a behaving like me, the so-called 'normal' sibling

if i do that then I am just a ginormous and useless fucker.

sorry i haven't put any Tom pictures up, my scanner is anathema to my tech skills, as is getting a movie up on this blog, and making the comments boxes active. there's a gremlin in my machines.

on a lighter note, i listened to some comedian doing a whole thing on a radio station about his night out with Lars Ulrich. Listen here:http://www.youtube.com/watch?v=59xskijoM-g. Now I have partied with some mental assholes, and they've turned out to be fucking diamonds; I have partied with some other mental assholes, who turn out to be, well, just assholes. I really hope he is the former. Am sure he is...

Our home

Our home for the next few weeks is this excellent Meet the Fokkers and Borat style only in America fairly giant mobile home. William chose this one because, "It's the funniest". We're sure that having our own moving home is going to be the least unsettling thing for Tom, and also the most tender thing to our ickle budgets. The extremely kindly people at Aussie owned Apollo Motorhome Holidays has given us a generous discount. The thought of staying in hotels is horrific when you are making something as low budget as Mission to Lars. I have this pre-trip agitation now, as I try to imagine what the hell this trip is going to be like. I think it's mostly going to be heavy metal, diners and driving...

Spreading the Love

Every day or so someone says or sends something to me, which makes me realise our Mission to Lars has ramifications beyond just getting Tom, Will and me pursuing a crazy plan. There are things about having a disabled sibling that many people feel, but rarely get to express in public, as if it were herpes or something - which it isn't, obv. Anyway, I got this email from the writer Clover Stroud this morning, who I've never met, and it deserves a bit of blogoxygen, no question. Thanks Clover. x

Hi Kate

Tiff sent me an invite to your party on the 28^th which I will definitely come to and I clicked through to the link on your blog about mission to Lars. I just wanted to say that I think what you are doing is totally brilliant. I have an older sister who is disabled after she was deprived of oxygen at birth. She is totally vulnerable and manic depressive, but also quite close to normality, but then a million million miles away from it, all at the same time. She lives with three other disabled women and their carers. I read yr blog about the guilt, and worse,  the shocking, shit-feeling ease with which we can sort of ignore a disabled sibling, and it rung very true. And I read yr piece in Style a couple of weeks ago and thought it was brilliant that you and Tiff had the balls to be public and open about it and supportive of disability. Terrible to say it, but balls IS what it takes I think -  lets face it,  magazine style  journalism isn’t usually interested in anything so unglamorous, unstylish as brain damage.  God knows, disability is sad. I feel sad and guilty about my sister all the time, and the endless questions about what her life might have been like are always there, painful and impossible to answer because the truth is so fucking sad. Her tragedy is that she knows she is disabled too. Imagine what that must be like: KNOWING you are mentally handicapped and that you will never do all the stuff like jobs, driving licence, own home, kids, the endless parties and fun of life,  that its easy to take for granted. I feel I have had such a massive  go at life, which has often ended in fuck up, but which has been an amazing ride too (and continues to be of course, so very very much to do still....) and my sister has not, and never will do.

Maybe I’m beginning to sound clichéd, I just wanted to say good on you, respect for yr mission: Space Control sending much luck to Major Tom.

Cloverxx

should we go for the mother and father of all RVs

I took my time to search out the blingiest rv in our price range and I think I've found it; it's nicer than the one I spent far too much of Glastonbury in earlier this summer, and its got smoky windows, which probably isn't ideal for filming but its great for appearing to be a the A Team. I guess Tom gets the bedroom, and me and Will sleep in the sink. James and Lee are getting a poky little second unit Winnebago. This is a funny piece of vehicle, basically like a coach that you go on a school trip in.

grrrr, why can't i embed my little mission to lars movie clip

first day's filming

Well, as I remember all other experiences of filming, the first day is never too tasty, and this first day was no exception. We went to meet Lynn Zwink who is the head of the Fragile X Society, she filled me with information til my head swam, not really helped by a bit of a weekendover; and her F-X son, Andrew pottered round the house in a very familiar F-X sort of way. Will and I were talking on the way back and we realised we had never met another F-X person. Tom is the only one we know. Andrew was kind of funny in the way that Tom is, but he was much much more hyper. Since Tom found an appetite for pies, cheese and wagon wheels he's become a lot more sedate. Andrew was a major Queen fan, and he treated us to a Freddie Mercury style show. Tom used to love Freddie Mercury too. Though there is no way Tom would ever have given us a show quite like Andrew's, complete with microphone stand strut and singlet. Very good.

I've got to do some work now, I've got 36 hours to clear my desk before we go off to do our thing with Tom, we need to get our shit a little tighter, and we know it.

First day's filming is always awkward and weird and no one really finds their feet til they get deeper into the story.

Gotta work. Please come to the Mission to Lars launch. I'll be lonely if you don't x

28 November

http://www.youtube.com/watch?v=gj1aPCZiStA

For tickets contact Mencap, kate.tintner@mencap.org.uk or call 020 7696 5547


Thanks to (with more to come)


Arthur Baker, Dixon Brothers and Cicada
Lost in Beauty, Johnny BlueEyes, Adrian Forster of ETA, Julien and Mehdi at Westbourne Studios


Alex James' cheese, Godiva chocolates, Marks and Spencers fruit and crackers, Rubens apples


Appletons rum
42 Below vodka
Hendricks gin
Monkey Shoulder bourbon
Sol beers


Journeys End wines

Croft pink port

Taylors Late Bottled port

28th November 2009, 10.30 til 4

Disco with a purpose. Half of all money will go to Mencap, half to the film project. See you there. I'll be on outfit change number two possibly three and god knows what else. Email me or Mencap for details: kate@katespicer.com Kate.Tintner@mencap.org.uk

Guilt

I pulled this off a charity called Sib's website. It's a bit simplistic, and I think it absolves the guilt all too easily. But, it's the first time I have ever touched upon sharing feelings of guilt about Tom beyond brief, very brief, conversations with my brother Will. Our family just didn't talk about all this stuff, it was just about Tom is This, get on with it. Weirdly, I feel guilty just writing this, I feel guilty about feeling guilty about Tom. Christ the human mind is inefficient sometimes....

Dealing with guilt

Guilt is self-reproach for supposed inadequacy or wrongdoing; another definition is self directed anger or blame. For many adult siblings, guilt eats into their ability to enjoy themselves and get on with their lives. The type of quilt experienced by siblings is usually in relation to something they feel they ought to do or feel about their brother or sister. It is absolutely normal for siblings of disabled people to have feelings of guilt.

Some of the things siblings feel guilty about:

• Not having the disability or illness when their brother or sister has (survivor’s guilt)
• That they can do things in life that their brother or sister will never be able to do
• That they have had uncaring thoughts about their brother or sister
• That they haven’t visited, or spent time with their brother or sister as much as they feel they should
• That they wish they didn’t have a disabled brother or sister
• That they have felt jealous of the amount of time a parent has spent with a brother or sister
• That they have resented the impact of their brother or sisters disability on their lives

Acknowledge the feeling for what it is

Take action

The feeling of guilt may be telling you that there is something you need to take some action on. The type of action you take will depend on the circumstances. For example, you may feel better if you simply make a decision to visit your sister twice times a month, rather than feeling that you should go every week but don’t actually do it. Put the dates in your diary.

Is there something you have been putting off and just need to go and do it?

'I have been intending to find a befriender for my brother for the last year and I’ve done nothing about it except feel guilty that he has no friends. I will spend 30 minutes on the internet on Wednesday night getting contact numbers for local services.'

Reframe how you view things

How can you think about this experience in a positive way?

'I used to feel guilty about being able to go skiing. Now I go and enjoy it and know that when I come back I will feel refreshed and energized and that my good mood will be good for people who are around me, including my disabled sister.Taking time to do things I enjoy will be better for everyone.'

'My brother would hate this; he wouldn’t like all the people and the noise. It’s a very good thing that he’s not here.'

Forgive yourself for things that are in the past and accept those things that simply can’t be changed. Just let go of things that you really don’t have any ability to change.

'I used to pretend that I didn’t have a brother and never mentioned him at school. I felt bad about this for years. That’s what I needed to do as a child. I don’t need to do it anymore. I don’t need to feel guilty about this. It’s just a way for a child to cope.'

red tape

So, being upright media folk, instead of the sort of people who enter the US illegally and work as journalists on a tourist visa, we went to the embassy to get ivisas, the visa that means you can work on media related stuff out there. We were turned down, apparently, because Tom is disabled then we will be driving the story, and not him, therefore what we are doing is entertainment and not news. To get an entertainment visa we need to have a lawyer in the US, which would probably gobble up half our budget and/or the backing of an American production company or news organisation.

We now have turned down for visa against our names on American immigration system, and potentially our small, entirely altruistic, awareness raising documentary is consigned to the dustbin.

No wonder people enter all nations illegally. Unless you bothered to consult a lawyer specialising in visas, which I assume most small filmmakers and immigrants of many kinds don't and can't, the red tape will snatch you.

Perhaps we should smuggle in across the border from Canada in a car. This level of subterfuge is not really ideal given the already significant challenges of traveling with Tom.

What a fuck up. If only we had broken the law, like everyone else seems to.

major :-(

makes lack of cash quite cheery and unproblematic in comparison

We need more money. Bummer

We're still £10,000 short of a cool budget to shoot our film. Anyone with any ideas, email me on katespicer@btinternet.com. Another BUM thing is that I don't know how to activate the comments boxes on my blog.

Bummer, indeed.

Me, me, me, and the Mission to Lars

Here's a really vain photograph of me Djing (definitely really badly, more playing records in public really) at the kiddy festival, Camp Bestival, last year. I found this randomly and my first thought, given how much I am concentrating on Tom and his relation to my world, and the world in general, my first thought was, Jeez, I have had a big ol' go at the Buffet of Life, I definitely took The Big Plate. I have gone back, again and again, for more. I am a fat fucker with life.

My Dad gave me some amazing photos of Tom this weekend but I can't make my scanner work, so I've gone for my default setting: ME.

What hit me about Tom this weekend was how much he enjoyed being included in, and an important part of, normal life. I know I said this before, and it shames me every time I go there, but it's been too easy not to think about Tom while I've been slurping up all the good times. And when he was here at the weekend all I could think was I love you so much, I want to protect you so much, I feel guilty, and finally, I know he'll step up to the plate with his Metallica challenge.

I spoke to a woman from the Fragile X Society tonight and she said that she thought we'd have massive problems getting Tom to face his ultimate dream, to meet Lars.

But I honestly, perhaps stupidly, believe that Tom can break through his autism and his communication barriers and his fears, and just fucking fight through all the challenges that stand between him and meeting Lars.

We're going to take it baby steps, take Tom up through a ladder of his heroes, from Uncle Pete to Lars, and when he finally gets there he'll have a new confidence that has nothing to do with diagnoses and medically imposed restrictions, he will have been on a big heavy journey, in the strictest tradition of the roadtrip genre, and he will arrive at the destination a better, bigger lived, man. And we, me and Will, as his family, will have grown to know him better.

It will happen, and it will be good, and it will be important, in its own small way. All of us have big things to face here, not just Tom, but me and William too. When the TV channels rejected us one of the reasons was that we were not emotional enough.

How anyone can suppose this won't be emotional. Jeeez

Five gins in, so possibly this is a crap post.

But it's all real, for me.

Tom is nuts for taking photos.

He mostly wears blue jeans and black fleeces and something like walking boots, though I have seen him in cowboy boots, biker boots and in sandals.

When he was with me at the weekend I noticed how incredibly sensitive I am to people staring, laughing or rolling their eyeballs. I am many bad things but one thing I am not is argumentative (except with boyfriends and Natesh Pothalingam) and I am never violent, ever.

I feel such an uncontrollable protective anger rise up when I see people have bad reactions to Tom, it's like I am waiting and if it goes beyond a certain level I will rise up like a cobra and shock them so bad their eyeballs will shoot out of their assholes like marbles.

Motherfuckers.

I don't know how to express how much I loathe the sort of morons who cruelly laugh at or victimise my brother and others like him.

Tom can definitely be very funny, and I should probably be less protective in this way. Because you can laugh at people without it being too hurtful or mean. I am sure that when I am on telly people laugh at me in a totally unpleasant way and hey, who gives a shit.

But meaness and cruelty to someone weaker than yourself; always always bad. Practised only by bullies and buttmunching asswipe losers. Etc

And on that eloquent note. Goodnight.

Ben

The only Spicer sibling not on this blog yet is Ben. Ben is the youngest. He's so superstylish I have to ring him to ask what to wear sometimes. In his day job he keeps important people looking special. Not sure I am allowed to say much more about all that, it's probably Top Secret. (He'll get me to take this down, and I probably will because he is so scarily together, not like a little brother at all).

Ben's boyfriend is called Scott, he is one of the softest, sweetest, kindest people you'll ever meet, he doesn't have the viper sting of a Spicer. He's been amazing with Tom from day one, the true test of whether a Spicer's latest other half is worthy of joining our ridiculous oversized family.

I remember him and Tom DJing one Christmas. I wish beyond everything I had some video of Tom's mixing and scratching. Let's just call it avant garde - and definitely better than mine.

To piss him off I've put up a picture of him looking poop splattered at Bestival.

Murder me later dude...

x

Mum

This is a triple thumbs up from Mum, Tom and me at my sister Amy's wedding last year. (Note how feeble Mum's thumbs up is, ladies of her type are not big ones for the trucker's favourite emblem of Happy)
At Amy's wedding, Tom made two speeches, one official and one unofficial. Always rounded off with plentiful "Cheers" action. Don't know what it is about Tom but he always manages to get the big thumb out of me, think it's something to do with his love of the Monster Raving Loony party, his preferred political party, even though he isn't qualified to vote by law.
My Mum's had a struggle with Tom, in some ways we all have. But Mums give so much of their soul and their abundant capacity to love and worry to parenting, and when Tom was born there was still a great tradition of mothers feeling guilty if they had a not normal kid. There's a lot of heavy emotional politics in this issue, that I don't think I am necessarily fit to mull, suffice to say it hasn't always been easy for my Mum, or my Dad and stepmum for that matter. My Mum has always been incredibly patient with Tom in a way none of us have.
But to talk like this negates what Tom has been through in his life, which, in some ways, none of us will ever know. Despite having poor speech and a low learning age, I know he has some insight into his 'difference'. He once grumbled that he didn't like any of his fellows at school because they were all 'mental' and I know that as his five siblings have raced through life, especially his brothers, he has felt the fact that he hasn't followed them. This is almost to painful to think about for my brother Will, we discuss it occasionally, I know that.
I recently interviewed some learning disabled people for a story in Sunday Times Style, all three, who were of a much higher learning level than Tom, knew they were learning disabled, and some of them were quite political about fighting for their human rights. http://women.timesonline.co.uk/tol/life_and_style/women/fashion/article6892120.ece
In an age when the immigration debate, women's rights and the right wing shame of the BNP fill us with angry, liberal despair, the learning disabled are the forgotten many.
Perhaps we should all vote Monster Raving Loony. Their manifesto includes a parliament on wheels, which would sort out devolution alright...

Tom's visit :-)

So Tom arrived on Saturday afternoon and is just eating some breakfast before he goes back to Bystock Court, his home, today. It's the first time Tom's been up to stay with me in over a decade. I asked him a fair bit but he always said, "I'm busy that day" before I'd even suggested dates.

It was a very busy weekend, culminating in a dinner with a lady who has raised a fair chunk of our backing so far; she is a rather international and glamorous type and, Tom, Mum, she and I went for a curry in Battersea last night. Tom was an absolute charmer, in as much as he was so happy, enthusiastic and pleased to be having this grown up dinner about important things, and to be included in it.

As we talked, including Tom as often as possible, instead of doing what is sometimes very easy, and just babbling on at our own pace, I watched Tom contribute and engage in a way that only happens if you give him the time of day. He will never interject or monopolise the conversation like I can, will, constantly do.

Earlier in the day him and I had left my nephew's birthday party in order to look after our tiny little grizzly niece. Tom is so sweet and gentle with her, I'd plonk her down on his lap and come back to find him dangling keys or stroking her arm. Sometimes we leave Tom out of the 'grown up' things like childcare and decision making. This trip is about concertedly NOT doing that any more; it's about a trip among equals, an adventure that is inclusive of everyone's needs. I know that we will find that if we let go and let this happen great new opportunities and understanding and love will unfold.

Dad bought a bunch of fantastic photos to London with him, which I will scan in a post up later today.

Sheffield Documentary Festival - postscript

Ha, ha, ha, ha, ha. Will and I were absolute newbies at the whole festival thing, we fluffed one pitch quite badly, well, I did with my scattershot enthusiasm; and spent a lot of time feeling like the new kids at school surrounded by knowing sixth formers. We didn't get too bothered about it long term because God you learn from mistakes much faster than getting it right and as long as we come back with decent rushes we can talk to people about funding and backing then. Will and I talked non-stop (when we weren't discussing what a pair of clueless goons we were) about the project. What I love about these massively confidence crises is that we always come out the other side with a stronger vision and a stronger sense of commitment and resolve.

Ha, ha, ha, ha. I used my sense of inexperience as a means of communication with other delegates. And after the daylight hours of feeling like dorks we loosened up with some booze and met some totally incredible inspiring interesting people and fitted right in fine enough. We knew a few people there and some important people were nice to us; some important people ignored us like a poo-ey smell, but hey ho, that's the important person's prerogative. You just gotta be able to ha ha ha ha ha at yourself when you aren't that important, ha ha ha ha, and crack on with it.

It was a useful positive move in the right direction heading up there, and the time Will and I had to think and brainstorm was fabulous.

It's so great to have Tom here for the weekend, he hasn't stayed at my place for over a decade and it's just blissful to have his gentle presence here in my home.

may i recommend the following from the Sheffield programme: american: the bill hicks story, winnebago man, 21 below, i'm dangerous with love...

Sheffield Documentary Festival

http://sheffdocfest.com/
Heading up here today to talk to various potential film funds. Need to have all my science and creative faculties about me, but partly because of spending so much time on this project I have been fucking up on my journalism. Woke up this morning feeling like I might screw everything up: my existing journalism work, the film, the money, the everything.

I just have to hope the walk to the station to get up to Sheffield will lift my spirits because I'm feeling flat as a pancake today.

Old family photos

Tom's the one in old skool NHS spex. As you can see we were a very stylish family. We were so style free that the major 70s trends like flares and lurid colours in polyester never hit our radars. The little girl kissing Will in the top picture is our cousin Maya, who we are meeting in Vegas for our first stop off in the US. The lady on the scooter is my Granny's cleaning lady, Frances. He's known her all his life. When my Granny died two weeks ago, Frances was still doing some cleaning for her on and off. Frances is 92. Tom loves Frances. He liked her mate Brian even more, Brian was an early Tom idol. Brian worked on a dairy farm. Tom would walk down and help him clean the yard and so on. Tom was obsessed by bulls at this time and we'd often find him sitting in a field containing a large and extremely fierce one. Luckily no harm ever came to him. Brian used to pitch up at my Granny's house on a tractor pulling a trailer full of logs. Logs, there's another thing Tom likes, and chainsaws. Mind you, who doesn't like logs, chainsaws, axes? Ah, those were happy days in my memory. But at the time I suspect I was an absolute brute to my poor brother. I can hear me now, "Oh Tom" or "Tom, don't" or just a long drawn out exhasperated, "Tom." I feel a bit bad now.

Uncle Tom Tom