Something really suprising happened. Well, sort of. Not Friday night suprising but equally unlikley in it's own right.
My dad came round. He just showed up. I didn't send the e mail or anything he just came round. His golf got cancelled or something.
It's so weird, that is probably the first time I've been happy to see him in ages. Actually it might be the first time. As long as I can remember I haven't wanted to go to his house for one reason or another.
He came round.
We talked. Not about anything that I was going to e mail him about but still. He talked to John. John was watching cars so he didn't say much back but that doesn't matter.
John seems so much better today. It comes and goes though and his tounge is still hurting him a lot but he's chirpier. He keeps doing John things too.
It's kinda sad though. He was doing John messing around on Friday and then suddenly had a seizure.
So you heard about what happened with John. It was so scary. I can actually see where it happened from my bedroom window, which isn't exactly helpful with the whole forget and move on process. Not that you ever can forget seeing that. I don't think any of us had yet recovered from the one previous to this and that was 3 years ago now. You're lucky you weren't there. I say that, but actually I'm glad I was there. I want to be there for John and mum and I'm going to the hospital appointments that are incoming.
Basically I'm writing to say that I think you should come over and see John. I understand you are really busy and stressed out at the moment with work and helping with granny but the fact is so are we. John has just lost pretty much all of his independance and that is a lot for all of us to come to terms with. Any hopes he had of learning to drive? Gone, really. Imagine how that feels for him. Just because he has Asperger's doesn't make him immune to emotion. In fact I would say that he feels it more than most.
So, yeah, I think that you should make time to come over and see him. But when you do come, please actually spend time with him, not mum. Okay, so it might not involve you talking all that much but just sitting and watching television with him and agreeing when he says someone looks/reminds him of someone despite over whelming evidence to the contrary is enough. Your opinion on things matters to him so much and I don't think that you quite appreciate that. I also think that you need to acknowledge more of his accomplishments. He's done so many amazing things in spite of and because of his difficulties in the past few years and I think you should be more proud of him.
Please don't get pissed off with this and think that I am telling you off because I'm not. I'm just thinking about so many things at the moment and through it all I don't understand why me, mum and John feel on our own. Mum doesn't like to ask things of you and has told me not to because you have a lot to deal with at the moment but think about it, how much does she? She has to work and support us on her own, deal with everything that comes with having a special needs son and make time to spend with me. Until recently on top of this she also had to handle having a boyfriend who was and is the biggest arsehole of a man walking on this planet and after all of that she didn't have someone at home waiting to make dinner for her, like you have with Mandy.
I wasn't going to tell my mum I was just going to send it but then I did and read it to her. I regret it now. She told me not to send it. She told me to just leave it alone.
I don't know how I feel now. I feel so bad about everything else that there isn't room.
Oh wait. Yes there is. I feel guilty because now I've made her feel bad.
I would kind of appreciate it if how hard it was to write would have been acknowledged, I think. I've never been anything close to vulnerable with my father and the idea of him actually reading that scared me a lot.
I just wanted to help. It would be good for John if dad spent some more time with him, I know it would. It would be good if dad did the stupidly simply of thing of showing him that he cared.
Last night my life took an incredibly suprising and horrifying turn.
John had a seizure. A really bad one. John had a really bad seizure just around the corner from my house. I can see where it happened when I look out of my window.
We just got back from the hospital about ten minutes ago. John is still really unwell but it's nothing we can't deal with. He bit his tounge pretty badly when he was fitting so we've got him some ice cream and soup for dinner. It's really scary because when he feels sick he makes these certain faces and his tounge being all messed up makes him make the same faces and then me and my mum think something is going to happen again.
It was just so sudden. Like, usually when he has a seizure we can track back what set him off but this time we can't come up with anything. We went over everything that has happened in the last few days hundreds of times in the hospital room but we came up with nothing. My mum thinks he's been leading up to it. The anxiety stuff and once he wet himself but he couldn't remember when or how.
I just can't get over how sudden it was. We were watching Big Brother, then, at 10 we decided to take Barney out for a walk. I was going to stay at home but I went in the end because my mum has a bad back and I thought that if Barney went for a cat he would really hurt her.
Everything was fine. John was talking and messing around, and then he started running forwards. He stopped really suddenly and put his hands on his head and said that he felt dizzy. I thought he was messing around. Why do I always think he's messing around? After that I knew something was wrong when he veered off into the middle of the road. You could tell he didn't know where he was going anymore. My mum ran up to him and told him to look her in the eyes but he had already gone. His eyes were going into the inside of his head and he was trying to turn them to look at her but he couldn't. At that point but mum shouted at me to go home and call an ambulance and I saw John collapse onto her as I ran around the corner, dragging Barney behind me.
When I got in I just freaked. I called 999 which I have never done before so I didn't know what was going to happen. They put me through really quickly and then I was talking to this lady with a nice voice. She asked me where they were and who was I to him and then I kept telling her that I had to go because I had to get back to my mum because she was by herself but the nice voice lady wouldn't let me put the phone down. Then she said was I at my address and I thought that was weird because I'd forgotten they track your phone calls. Then she asked me to find a mobile phone and give her that number and I couldn't find the phone and panicked because of that.
When I had the phone a nieghbor turned up at my house because my mum had screamed or something and loads of people were outside around John. He's stopped fitting when I came back but he was being really, really sick. He always vomits an incredible amount, that's why his seizures are so dangerous.
Then I sort of lost track but there were lots of people around who I didn't know but seemed to know me asking me about my GCSE results which I thought was stupid considering what was happening on the floor in front of us and I couldn't talk to anyone properly. I had to go back to the house quickly when the ambulance came to turn everything off and sort out Barney and the guinea pig. Then me and my mum went in the ambulance. I've never been in an ambulance before. The men that drove it were nice. Ambulances have lots of buttons and stuff.
It felt like forever getting to the hospital. I wondered what people were thinking when they saw the ambulance go by, because whenever I see one go by I wonder what's happened and feel bad for the people having the scary night.
When we got to the hospital they put John on this stretcher thing and he was still all scary and jerky. It was horrible because he was still being sick and it was getting everywhere because he couldn't seem to keep himself still even though the actual seizure part was over. The nurse came and had to put this drip in the back of his hand but it kept going wrong and then John kept saying that it hurt and trying to pull it out and then it went wrong and he was bleeding loads. When they put the drip back in two nurses and my mum had to hold him down to do it. I just stood there.
I was really scared they weren't going to let us stay the night. When he's like that the hospital is the only place that's safe and if they abandon you you have no one so I was really relieved when they let us stay. The jerking stopped after a while and he went into the deep sleep that he always does. When John was asleep it was just me and my mum and I tried to talk about anything except what was happening and then my mum said she had thought he was going to die and it was horrible.
Then it was the middle of the night. We were waiting for the doctor to come and she didn't come until about 3.30am. I said I wondered what everyone else we knew were doing because I forgot it was so late and my mum said they were probably sleeping. Then for some reason we started making each other laugh. It was weird.
After the doctor had seen John and said he had a slight ear infection which may have triggered the seizure and told us to go and see the nuerologist again and that they weren't going to up his medication my mum had to get a taxi home to sort out Barney.
It's really strange being in a hospital on your own. I didn't want to go to sleep because whenever I stopped thinking about random things like Life On Mars my mind replayed what had happened.
I hummed for ages for some reason and then I pretend that I was a tight rop walker. I fell to my death about five times and even when I didn't I was still really crap. I am not graceful. I paced a lot. When you don't want to fall asleep walking around is useful.
Then it was this morning and I didn't eat and I left the hospital which turned out to be a mistake because it made everything real. The whole night up until then I had been waiting to wake up. John's seizures are something I had nightmares about and something that I worry about but in the morning outside of the hospital it was all real and that scared me.
I went to sleep for a while in a really uncomfortable chair and when I woke up I thought I was going to be sick. We talked to some nice staff who were much nicer than the night staff (except one night staff lady who was lovely and gave us coffee and stuff) and this funny man who made us laugh.
It got sunny once it actually got to be day though and since mum had brought Barney back with her in the car he might have been getting too hot so I went to sit in the car and have to doors open to cool him down. When I left the hospital I felt really weird and I didn't know whether I was going to laugh or cry or scream. We hadn't parked in the hospital car park because it's expensive so we were in this cul-de-sac thing that I had to cross a busy road to get to. I saw a narrow bit of road at the bottom of a steep grassy hill (why would you put a hospital at the top of a huge hill? It seems kind of mean, if you ask me.) and started going down the grassy hill and then fell over and somehow that was the last straw and I went mad crying.
I don't know why I cried. I don't know what I was crying for. I still don't know. I sat in the car that actually wasn't too hot for Barney at all and cried for ages and watched lots of people drive past and imagined the funny looks they were most likely giving me. I thought about how if this was one of the books I read then someone would come and give me a hug and sort it all out but it wasn't a book and the mess was unsortable and actually, when I really think about it, I was happier left alone.
When the crying finally stopped I walked around the houses and then started running really, really fast. I felt like I had lots of left over adrenalin from last night and running was fun and after that I felt better. The people that lived on the street probably thought I was a complete looney.
I went back to the hospital after that, and we waited for another few hours for some meds for John.
He should probably be feeling better on Monday as long as nothing else happens.
I know it's a little cheesy but this is such a cute video. I love Taylor Swift. I know I shouldn't, but oh well.
I go back to school on Tuesday. I don't think I want to. I'm worried that I've made all the wrong choices. I'm slightly concerned about the rest of my life as well but I'm trying not to think about that too much.
Yesterday was a bit weird. I mean, aside from the whole GCSE result thing. I spent a lot of the day being sad (I know, only I could do that, right?) because my dad phoned and he never bothered when John got his results. I don't understand any of that stuff. It makes me feel so, horribly, gut wrenchingly guilty though so I am not going to talk about it.
In the evening I went to see Harry Potter with mum John, mum's friend and his 2 kids.
I wasn't freaked out by that at all. I was also totally not freaked by how they all look related with their brown hair and skinny-ness while I looked wrong with my relative plump-ness and ginger-ness.
Because I was totally fine I obviously didn't behave like a complete prat.
I couldn't control it. It was weird.
Also, I really want to see Dorian Gray. I saw the trailer yesterday, how amazingly good does that film look?
Oh, and I definately hate Emma Watson. I tried again yesterday, I really did but whenever she speaks it's like fingernails down a chalk board to me.
I know this is a stupid thing to say but... I have GCSEs. That is really, really weird to me. I can't believe I did it. I've like.. accomplished something. This is so weird.
The results:
Religious Studies: A
Child Development: A*
Media Studies: A*
English: A
English Literature: A*
Additional Science: B
Science: C
Maths: C
Spanish: C
srtpqoutpiutha pv9utry
I did okay.
I didn't fail anything.
I am so shocked about science. I got a B. A B. I don't get that kind of thing in science because I'm terrible at it. I can't do Chemistry. At least, I thought I couldn't. I just wrote what I thought I knew in every single answer box even though I didn't exactly understand the strangely worded questions.
And I thought I had ruined my English so much because of the weird foot man story when everyone else had gone down the beatiful language route.
rgaousrgpiuewtrgpiUSBFVIB.
I did okay.
I'm in shock.
After I got my results and my mum had stopped crying (lol) we went and had coffee and met this really nice waitress. She had just moved down here with her boyfriend and made me think that actually, now life is getting kind of exciting. I mean, I'm still terrified but I think now maybe... things might be kind of interesting.
I got clever person grades. Well. Not exactly. There was one guy whose lowest grade was an A but I don't even care because I did well. I can actually say I did well at something. 'Cause I kinda did. I'm so happy that I did well in English.
I'm so average though. Like, in end of module tests I always do really badly.
But I didn't get all Cs and Ds, which, frankly, were what I was expecting. It's like... I tried so hard and something actually came out of it. It was actually worth it.
I'm going to shut up now because I sound all stupid.
But.
Before I go..
Yay.
Oooh, and my bank just wrote to me and told me because I have an under 19s account I can get money off driving lessons
I haven't blogged in a couple of days because I've been reading a really, really good book. It's called Generation Dead and is by Daniel Waters. It is a really good book. I don't know how to explain further than that without giving anything away.
Basically it was amazing and I cannot wait to get my hands on the sequel. And it meant that I didn't go online for 2 days because I was busy reading. So take from that what you will.
Inbetween reading, playing guitar and being on the Sims (I don't know why I like that game so much) I went to this place called Greenway with my mum and John. I love it there so much. It's a National Trust place and was Agatha Christie's summer home. I've been a few times before because I really love the gardens but I'd never been in the house before. It's big, and really nice. You can stay in certain parts of it if you have 10 people that will go with you and a lot of money.
The main reason I like it there though is the gardens. There's lots of weird sculptures and water features throughout that you can find using this little map. If you walk for a while you also find this little boat house. Downstairs it's this bat lair (or whatever you call a place where a bat lives. I thought lair kind of suited them.) but upstairs there is this lovely balcony that looks out over the river something (I'm not so good with Geography.) and even though the sun wasn't shining it was still really pretty.
My mum seems a little better than she was. Well, she isn't exactly. I mean, she's still really stressed because she has a deadline she's terrified she's going to miss but she doesn't seem as... disastified as she was. I think having a weekend off might have helped her a bit.
I really don't get why Hugh going to Switzerland suddenly made her life so crap though...
I get my GCSE results on Thursday.
Thursday.
Did anyone else watch Jam And Jerusalem? I love that program. I went to where they filmed it once. Hugh was being horrible on the day we went. I don't know why. Lol, I never know why. It was okay though, I remember, 'cause I'd just got Get Awkward (BYOP cd) and I just walked around listening to that all day.
Everyone else had to listen to mean-ness while I had LIFE IS LAME SO LET ME EAT YOUR BRRRRAAAAAAAAAIIIIIIIIIN
Plus the song fits 'cause Generation Dead is kind of about zombies. Non-traditional zombies.
Muse tickets go on sale today. I can't believe I'm not going. The really sad thing about it is that I can actually afford to
So, you find yourself asking, why am I not going?
Because, my friends, I have nobody to go with.
Yep. I am indeed that sad person. And no, I don't have enough confidence to go by myself.
None of my friends like the same things as me. This depresses me a lot. I can't really get excited over things with my friends because they're just so... take it or leave it.. about the things that I like.
It has occured to me that I am probably exactly the same way.
When I first realised that I had pretty much nothing in common with the majority of the people that I know I did try to do something about it.
I first had it in primary school, when my then best friend starting really enjoying all her horse stuff. When this happened, I found myself immediately being left out when she and this other girl (who I really hated anyway) spoke about horses for what seemed like hours. When this happened I begged my mum to let me have horse riding lessons, but, we couldn't afford it. Plus, to be honest, I didn't really want to learn anyway. So that friendship didn't last. Although I think it may have had something to do with the fact that her mother kinda really hated me. To this day I have not figured out why. I wasn't even annoying in front of her. Seriously, usually mums like me.
So then there was secondary school. I knew I had made a mistake the second I spoke to the girl who would go on make the next two years of my life hellish because she made this really crap joke. I know it know sounds like I'm being totally judgemental but that isn't how it is. She didn't just make a crap joke, she made it about a hundred times. After telling me said joke, she told Rose (who I'd also just met. Although, I can't actually remember meeting Rose. All I can remember is Crap Joke Girl) and the other girls in the circle of people I had had the bad judgement to talk to (excluding Rose. She's like my best friend now despite the nothing in common thing) until everyone had heard it.
Within a week Crap Joke Girl has turned into Devil Bitch From Hell and continued on like this until she (thank god) moved away at the end of year 8. She was really possessive of Rose so when I made friends with her I had immediately done something wrong. She started off making all the people who had allowed me to hang out with them run away. I know this sounds really stupid but I was 11, had come from a tiny primary school to what seemed then the most massive place in the entire UNIVERSE only to have the 5 people I did know run away and leave me to get lost. Rose stopped running away eventually though, and I will never forget that.
Then, post running away from me all the time Devil Bitch From Hell found many creative ways to punish me for making friends with Rose. She had this interesting way of falling out with me without actually letting me know what I had done to offend her. Lol, I just remembered something else. For the entirety of the first year I knew her she rolled her eyes and everything single thing I said. I'm serious, I'm suprised she didn't give herself vertigo. I remember mentioning it to Rose once and she just said "Oh, she did that me to."
Anyway, pretty much every day she would stop speaking to me, I would apologise (for having done nothing. As far as I could see anyway.) and she would say that I couldn't possibliy be sorry when I wasn't even aware of what I had done. Once when she said that I turned to Rose and said "What did I do?" DBFH insantly snapped "Don't tell her. She has to figure it out for herself."
Ah those were the days. It actually got worse when she developed crushes on guys. She would instruct me to make friends with them so talking to them was easier for her and then accuse me of flirting with them whenever I spoke to them. Flirting? Jeez, I was 11. What kind of 11 year old knows how to flirt? Definitely not one who had 15 kids in her year 5 of which were boys of the chubby, slightly smelly variety. I tried explaining this to her but she would never listen.
I think it was around this time that I just developed my own tastes. It's kinda stayed that way. Rose got sick of the constant awkwardness so got closer with her cousin, Judy and now they're both really into fashion and weird Bristolian music. I tried to be into both of these things but I would rather spend money on books than clothes and I just think that the music is crap. Plus shopping bores me to death, I swear.
Not entirely sure what the point of this was. I sort of forgot half way through.
I think there might be some posts about DBFH waaayy back in this blog. I got rid of her eventually when I realised that despite her having moved away she wasn't going to stop messing with my life.
HA. I just read that and heard how it sounds.
I didn't kill her. I just send a bitchy, kinda passive aggressive e mail. Apparently she cried. I think that's pretty impressive for someone (me) who can't handle confrontation.
Last I heard of her she was all upset because she couldn't get her boyfriend to have sex with her.
I wonder what I would be like now if she hadn't of moved away...
I went to see my gran last night. I think it went okay. She seemed a lot better after we'd been there for a while.
Just...
Well, something's gone on at the hospital, but we don't exactly understand what. If what has happend happened in the way that she has told us it did then I swear something should be happening. I phoned various people this morning - one of whom was very rude - only to find out (eventually) that the guy I need to speak with, her GP, is on holiday. So I have to wait until Monday. It's driving me a little mad, to be honest.
I want to talk about it but I don't. So there we go.
It's just hard to tell. She was generally kinda... confused. And she never quite finished the stories that she was telling. And she was upset anyway because she found out that one of the preists at her church died on Tuesday night.
So I don't know.
The hospital was so depressing. It was only small but we couldn't find my gran for ages. I didn't help by accidentally saying the wrong surname when I was asking. My excuse is (as it is for everything, I'm realising) that I was freaking out.
The whole time we were there there was this man, I don't know where he was but he was just yelling "help" every five seconds.
I know that it isn't but I'm sort of wondering if he didn't have reason.
Yeah, I know. This makes so much sense.
My dad doesn't even know why she's in hospital. And she said she's never telling him about the incident that may or may not have happened. She was telling us about his stressful life.
It was hard not to laugh. He must be the most wrapped in cotton wool man in existance, I swear.
I'm beginning to seriously consider walking around my village WITHOUT listening to my ipod.
People keep speaking to me. I don't know why, because they didn't use to. Thing is, I can't talk to people. This is something that I have said a lot of times, but that is only because it is true. I even panic when people I don't know very well say hi. What are you meant to say? Just "hi" back or "how are you?". But then, the thing is you have to follow on from a "how are you?" with actual conversation and I am quite possibly the worlds worst small talker. I think I sound really fake as well.
Anyway, the ipod thing. The other day, when I was walking back from the shop I saw the postman. I like our postman. He's nice. It's kind of embarassing seeing him though because he has seen me crying (he knocked on the door with a package just after my rabbit died.) and looks at me as if he thinks I might be a little bit crazy whenever he sees me.
I said hi (I couldn't actually hear myself say it though. Do you ever get the thing where you have your music on too loudly and say something, but because you couldn't hear yourself say it wonder if you actually said it or if you just thought it? Because like, there's the whole I-will-not-shout thing going on at the same time. Or is that just me? I also wonder if I said hi in a weird voice. I mean, I didn't hear it. I could have said it in this really deep voice without knowing.) And I think that he responded with a "hi, how are you?". Thing is though, I had my music on so couldn't hear him. So, instead of taking out my head phones like a normal person and saying "pardon?" I just smiled like an idiot while he gave me a funny look and walked off. God, I sound so rude. I swear it isn't exactly my fault though, I had a lot of stupid things going around my head.
First I was thinking "Crap, did I say hi or just think it?", then there was the whole "I wonder what he just said. Take your ear phones out! TAKE THEM OUT!" argument along with "Oh god someone talking to me what do I do I don't know what to talk about!! How am I? I don't know! How am I supposed to know? Why are you putting all this PRESSURE on me?!" rant going on. Plus there was the bit of me that wondered if he maybe just say hi, in which case taking out of my ear phones and saying pardon would make me look like a dick.
"Hi"
"Sorry, what did you say?"
"Er... hi."
"Oh. Um. Hi"
The freaking out that would going on during that conversation... well, I won't even write it out.
Basically I'm writing this because the exact same time just happend again. Except this time it wasn't the postman.
Something similarly stupid happened in the shop the other day when one of the ladies who worked there asked me what I was doing for my GCSEs and what was happening after the summer. I completely forgot, obviously. I have actually struggled the get my own name out when I've been panicking before.
Lol, and yesterday this lady stopped to talk to me (the one time I took my head phones out, actually. I think felt she obligated because I did that which, of course added to the awkwardness of the situation.) and she has recently been made redundant, and she's pretty openly pissed off about it. So, of course when she asked me how my mum was I had to say "Um. She's okay. She just has too much work on I guess."
Sigh.
I'm seeing my gran this evening.
My mum is still miserable and I really don't know what to do. I can't even pretend like I relate because no part of me feels sorry for Hugh. She's freaking out because he's going off to Switzerland. Again, I don't know why. I hope he stays there. The Swiss are welcome to him. I think that might be what she's worried about.
Hmm..
My gran has fractured her spine. My gran my dad's mum.
She wasn't very well anyway because she fell and damaged something. Everytime I hear something she sounds worse. I feel really guilty because since things got weirder with my dad I haven't seen her because I haven't been around to my dad's house. That's like months. 3 if not 4.
Dad texted and said she was in hospital because she got dehydrated. They transferred her today so she was in her town and I just phooned expecting that she would be out in a couple of days but she said she won't be for a while yet.
But her spine. Spines are important. I mean, it's a spine.
She's 90 but she's always been so active. Being active was how she hurt herself last time. She decided to move some furniture around. I can sort of imagine she did it because she asked dad and he didn't do it.
Try saying denim lemon five times fast. It's really hard.
OMG PARAMORE NEW SINLGE AWESOME NEW ALBUM ALSO AWESOME. I will be getting that when it comes out. I'm so excited. Riot! is the only album I've ever brought without ever having heard any tracks beforehand. Riot! is also probably the album I listen to most. I had it on so much when I was revising for my exams.
My guitar teacher says I should do grades. This will eventually mean I have to read music. I told him about the piano thing and he agreed with my mum and said he thought it was because of the way that I was taught. I said that I would think about doing the grades, but would have to see what my work load was like at college first. The more I think about it the more I would like to do them though.
Don't get me wrong, I'm glad they're doing it. I'm glad they're finally doing it but reading the report has shown me how truly abysmal support currently is. You'd think, this being 2009 not 1940 there would be something more than what there currently is but no. I'm glad I read the summary of the report, I was aware something was going on but I didn't understand exactly what. I hope it goes through. I hope it goes through sometime soon.
I think this is probably one of the main things that wound me up:
What things are like now
• General awareness: Understanding among the general public of the characteristics of ASD and how this can affect behaviour is low, leading to intolerance, discrimination and isolation. In a survey by The National Autistic Society, 83% of individuals with Asperger syndrome felt strongly or very strongly that many of the problems they faced were a direct result of others not understanding them.
• Awareness among professionals: Training in ASD and awareness of the condition among professionals that provide support to people with ASD, or who come into contact with them for other reasons, is poor. For example, 71% of local authorities do not think that care managers receive sufficient training in ASD in their initial professional training.
Although, I've got to say this
What things are like now
• Diagnosis and post-diagnostic support: A lack of diagnostic services means that the vast majority of adults with ASD (who did not get a diagnosis as a child) remain undiagnosed, and are unlikely to be able to access the services they need. Where diagnosis is available, it is often done in isolation, meaning that post-diagnostic support is not always available and that a needs- and skills-based assessment that feeds into the development of a person-centred package of care is not carried out.
• Health care service inequalities: A lack of understanding of ASD among healthcare professionals means that additional health problems are not always recognised. There are also often misunderstandings about co-existing conditions (e.g. dyspraxia). Moreover, if adjustments are not made for a person with ASD, the experience of visiting a health setting can be distressing.
• Mental Health: In general, adult mental health professionals do not have the necessary training, expertise and experience in either ASD diagnosis and assessment or in the support needed by people with ASD who have additional mental health needs.
doesn't exactly make me jump for joy either.
My brother has Asperger's syndrome (supposedly. My mum thinks he was diagnosed wrong) and dyspraxia and as soon as he was diagnosed the doctor pretty much told my mum to be on her way.
When we went to the doctor to ask what we could do about John's constant hitting and biting himself (we went about this like 3 years ago and it's still just as bad now) the doctor simply shrugged at us.
I have about a million examples like this.
To be positive though, the bill they are trying to put through really goes look amazing. I'll link you the summary of the report but I kind of doubt you'll want to read it. It does make me hopeful though. Ooh, and it definitely covers all ASD so yay.
I just think the obvious ignorance among the health care professionals of ASD is so ridiculously terrible it's almost funny.
The documentary The Autistic Me was on BBC3 earlier in the week. I've only just watched it on iplayer 'cause I was out that night but I would strongly recommend watching it.
It's honest and it comes from the point of view of the boys. Certain things happened in it that I disagreed with, but I suppose they worked out for the best in the end. It's interesting for me because I can pick out the characteristics that I see in my brother. I saw a bit of him in all 3 of the boys the program was about.
The one thing I did have a slight problem with was how the mothers seemed to be coming across as way too clingy and controlling. I think that this could easily be misunderstood and thought of negatively. It's really hard to take care of someone who matures slowly, since you can't treat them the age they are because they wouldn't understand and you can't treat them like a child either. There's also the fact that it's terrifying to think of your kid or sibling or whatever going off into a world they don't understand full of people who would take advantage.
There is a lot I think a person should consider before judging those women.
It's about an hour long but if you have any free time it's really worth watching. It is suprising, considering how common it is the amount of people who do not understand anything about Austism.
Hugh keeps going on to my mum about stuff. He's making her feel really guilty. He keeps saying how he knows lots of couples that broke up and stayed friends. I'm not saying they shouldn't stay friends (actually, I am but no one listens) I've just said that I think meeting up at the moment would be a bad idea. If they met up now, they would end up having a conversation that my mum can't handle yet and would definitely end up back together. Hugh knows exactly what to say to get to my mum.
I just know that if they got back together we would be in exactly the same position we were in before we went to the Dales in a years time. We'd all go up there together again, barely speaking to each other and constantly walking on egg shells and then they'd have another "talk" and we'd be back at the Lets Just Break Up place AGAIN. The fact is, he didn't treat her well. He didn't treat me and John well either. He has been awful to John, said many really nasty, serious things to me some not so serious. Still, someone calling you fat constantly does tend to get to you after a while although I much preferred the calling me sat to the vaguely pervy stuff he started saying towards the end. He's insulted my mum's parenting, insulted her very existance, actually. My mum has been through so much and he never even acknowledged it. All that ever mattered was what he wanted and if there was any deviation from that my mum was a bad person who in his mind, deserved to feel bad. She has got over so much and become such a strong person but he doesn't see it. She is an amazing mum to me and John really, she's always been there even when it was hard and simply getting out of bed in the morning was this huge thing for her. And the ridiculous thing was, through all the depression where was Hugh? He wasn't there. He was the one causing it all, actually. He promised her the world and then took it all away once he made her need him.
He's scum, and I refuse to feel sorry for him.
Still, this whole meeting up thing does put me in a slightly awkward position. If they do meet up soon, it'll be in the summer and it'll be when I am around. I know where they would go and I know that my mum will probably take John with her. I have sworn that I am not going to have anything to do with Hugh ever again but what if I don't go and something happens? What if I don't go and he says something to upset her and then she gets back together with him? It'll be all my fault.
But, on the other hand he phones and says stuff anyway and I have no control over that. It makes me paranoid whenever he phones because he's saying stuff and I don't know what.
I just sort of said to my mum right now would she be okay if I wasn't there. She said she knew I wasn't going to be and wouldn't ask me to be there. She says she's worried about me at the moment 'cause I'm sad all the time. I'm trying not to be sad, I just can't seem to be happy right now. I don't see happiness on the horizon, if I'm honest. I see dragging myself through 2 more years of school getting gradually more miserable as my friends gradually get cleverer (yes, cleverer) and more popular than me.
Whatever though, this isn't about me. What do I do? I know you're supposed to get closure on things, and if I never tell Hugh all the things I frequently scream in my head and hit walls about etc then I'm never going to feel... okay. But I can't yell at people. I just can't. But then, thinking about it if I did yell at him then it would upset my mum and then my mum might get mad and take Hugh's side and then I wouldn't have anybody.
I want to talk to Rose. I think she's in Ireland/Cornwall though and I don't have my phone anymore so I can't call her. Not that I have ever called a friend to talk about my problems. I just sort of want to talk to her 'cause she talks about stuff and takes my mind of stuff. I haven't seen her for weeks. She sent me a really nice text that I couldn't reply to 'cause I had no credit and then my phone broke.
Kailee just asked me "What's happening with you?"
Ha ha. I don't think I want to tell her. I don't know why.
Track: On the Planet Earth - Danielle Ate The Sandwich
My mum is worrying about me because she thinks that I don't have any motivation. She thinks that I'm bored and that it's her fault. She also thinks that I am incredibly unheatlhy because I don't do any exercise.
I have many arguments against this.
I have read like 13 books in the last few weeks. If that isn't motivated what is? I have also practised guitar every day since my first lesson. Not only do I practise it, I learn it and then have to teach John. I would call that motivation.
I'm not bored. I am perfectly happy sitting around the house reading, playing guitar and watching films all day. I have started talking to people again and already feel bad about Kailee. I like Kailee. I love Kailee, she's such a sweet person but if you talk to someone all the time then they go away that sucks and I don't want that and I don't know what's going to happen over the next couple of years so I don't think I wanna be as close as we were getting before the summer. Being sort of not social is my own choice, I think that for now I'd just rather deal with stuff on my own (besides this blog, I mean).
And finally, I was doing loads of exercise. I was sort of hoping it would last me throughout the summer. I did so much running before I did Race For Life. Seriously. I got up at like 7 every day just to go running. Oh, and even if I wanted to exercise I couldn't have in the last couple of days. In the last couple of days I haven't left the house particularly because of my face. Don't panic, this isn't some new ridiculous level of self conciousness, I do have reason. I was given this stupid stuff by the doctor for me skin (spots) that didn't work because it was really weak because the doctor thought I was stupid for going out it. Okay, I don't have mad acne or anything (yay me) but it was annoying me. Anyway, he gave me this stuff to use once the first stuff ran out and the second stuff messed my skin up. Really, it's made my face all eczema patchy and my nose has gone very strange. It's better now than it was, but it doesn't look good.
And being the mad self concious type anyway this means I can't go outside.
Or not outside my garden, anyway.
My mum is really sad still. I don't know what to do. We have to (probably) see all the Spring Harvest people in a couple of weeks. I like them and everything, but they really mess with my head. I think to an extent, they do with my mum to. Plus the whole prospect of driving up there is making her freak out. I think it would be better if we just didn't go, but I think she feels she has to.
Hugh keeps saying stuff on the phone. He hasn't asked her outright to get backtogether - he's waiting for her - but he just keeps trying to make her feel bad. She says that isn't what he's doing, and that he's just really sad but... it's not. It's not because he's sad. He's being manipulative. And he keeps phoning up at really stupid times. Like 7am. It was so stupid, but yesterday after it woke me up I got so mad I cried. Lol. I a little bit crazey. See? This comes back to my previous point. It is better that I don't see anyone.
You know what really annoys me? No one I know has the same music taste as me.
God, I'm even boring myself.
Track: Anyone Else But You - The Mouldy Peaches (I feel like watching Juno...)
I finally contacted Kailee yesterday and now she's all happy. She was really worried about me. I wasn't even gone for that long. three weeks is nothing, my dad managed three months. Anyway, why wouldn't I be okay? Maybe I just wanted to be on my own for a bit. Maybe I don't need someone to make me feel bad about that.
Yes, I am aware that I'm being mean. Ah, seems there was an alterior motive.
To be honest though, I did have perfectly good reason for not speaking to her. I've been thinking about how sometimes, when my mum is talking about something I just want her to shut up. Like, it gets to a stage when I just can't be bothered to listen anymore. And then, thinking on that I realised I must be exactly the same. The whole time that my friends have known me I have always had something negative to say about Hugh. So... how does that make me any different from my mum? Basically I was being a hypocrite. Plus, there was the fact that no one actually wanted to listen to me anyway and when I realised that I felt even worse than I did to start off with.
Anyway. The next part of this is where I tell you all I am in love. Yep. It's true. With Jake from All The Small Things. I don't think that the 15 year age gap, that we've never met or the fact that he is essentially a fictional character will get in our way.
John isn't helping. He had to go and buy the DVD because he liked it because there's an autistic guy in it. Now it's on whenever I go downstairs and all I see is Jake Jake Jake.
Okay, so the program itself is really, really cheesy. But in the end, that doesn't even matter. Jake makes up for it with his sexy-ness. It's the singing guy that John likes. And he says that he fancies the drumming girl but he said he was gay a couple of months ago so who knows really. The guy up in the thingy is the one I am going to marry.
It's allowed. I feel crap. This crush makes me feel better.
This is so cheesy. It was such a weird program. It really went for it with the stereotypes. Haha. This video really makes it look awful. It's good damnit. It has Jake.
Omg the end is so funny. Look at his face. I do love him but I can appreciate that. The old guy is such a dick. Really. The first time we watched it me and my mum were yelling at him.
I have to answer the questions below as part of my year 12 induction work for my psychology course. I think I know what I'm going to write for most of them, but I would be interested to know what other people think. You know, if you have time.
I really can't believe I'm starting my A-levels. I'm terrified.
I feel kinda better about stuff today though. I spoke to a friend yesterday. She's an online friend from my AOL days. She never seems to want to hear about my problems, and I think that was good for me this time. Talking to someone made talking to people less scary.
1) Why do people often act differently when they are part of a group compared to when they are just on their own?
2) Why do we remember some things (such as your own birthday) but forget other things (such as when your mum/dad asks you to pick up something from the shops)
3) Why do some teenagers have a difficult time (arguing with parents, dropping out of school getting in trouble with the law etc) whilst others seem to have a settled straight-forward time of it?
4) If someone became depressed what would be the best way to help them . . .give them medication (such as Prozac), talk to them (get them to off-load their worries) or take them out for a treat?
5) Why might females be much better at dealing with stressful lifestyles than males? (A lot of research suggests that on the whole this is the case).
Okay I just came up to my room because I cannot go downstairs and make eye contact with my mum without an explosion of some kind.
Just now, my mum's friend drove us up to collect John from his work experience and he said that it would be okay if we took Barney (my dog) because Barney really hates to be alone.
Barney is kind of old. As he's got older he's gone deaf and his going to the toilet can be a bit... unpredictable. Half the time, we don't think he even knows when it's going to happen.
To sum up, he has crapped in my mum's friend's car.
I sort of quietly pointed it out to my mum before we went in, and expected her to say to her friend "Oh my gosh I'm so sorry" etc etc but she didn't say anything!
The fact of the matter is, there is a poo in Sean's car and we can't just leave it there and wait for him to notice.
I actually can't stop laughing. Everytime I make eye contact with my mum I can see her wondering what she's going to do.
It's so weird that John didn't notice, it was right next to him.
Oh no. My mum is making me be distraction while she goes and sorts it.
John had another bad night. It was really bad, he must have got up about 6 times. Despite the night light thing that we got for him he still wanted the bathroom light on, which is really disturbing since it pretty much shines right into my room. It didn’t matter so much last night though, I wasn’t sleeping anyway. I was having one of those nights where I just feel like I’m going to throw up.
Anyway, it’s not like it matters if I get woken up. I’m not doing anything today, my mum is. She has had pretty much no sleep all week with it and she’s got too much work and the bottom line is that she needs to sleep. She feels like crap all the time and she never has enough breath ‘cause she’s stressed and it’s just…
I don’t know what to do.
John didn’t used to be anxious like this. Being anxious about stuff has always been the thing that I did and it’s easier to deal with it with me because I can just say what’s wrong. John can’t really express it. He just keeps getting up, and every time he does he opens my mum’s door and wakes her up.
He’s 19 now, so he’s passed the age when the help is available. Not that there ever was any help anyway. I don’t know what to do on this one. I honestly don’t. I was lying there half the night trying to figure out exactly what might be causing it and what we could do but I couldn’t come up with anything.
It’s going to get to the stage where my mum can’t cope, I know it is.
And there’s this other problem. She’s working on this project for anti-bullying week where she and her friend go round schools doing the presentation thing. She’s going to be away for a week. I said that we’d be fine on our own, but she wasn’t happy with that anyway because of the epilepsy and stuff and she thought it wasn’t fair to ask me to look after him on my own for a week. Plus I have no idea how the hell to figure it out with going to college myself and picking him up at the station at the right times every day. I thought though, despite this I had persuaded her to leave us. But now…
He doesn’t talk to me when he gets upset like this. When he gets upset like this he gets angry if I try to do anything.
I don’t know what to do there either. My gran probably won’t come down for a whole week because it would mean that my aunt and uncle would have to find someone else to look after Cate for a couple of days (they totally could.) and we don’t have anyone else. My mum was considering asking my dad but he’d say no. Mandy wouldn’t let him and besides it would be so awkward.
Then there is the whole thing with my dad. I haven’t been to his house for nearly 3 months. I never want to go again but I feel guilty because I see my gran when I go to my dad’s so I haven’t seen her for ages. She’s been ill as well and I haven’t seen her. Which is, you know, the definition of selfish. My mum said that she’d take us round there but she hasn’t had time. I know I should phone her. I have once but it’s not enough. I sent her a postcard from the Dales too.
I feel bad about my dad as well. He seems to be making more of an effort. Well, he texts my mum and says he’s coming around on really short notice but I suppose it’s better than not hearing anything for months. We’re going out with him this evening. My mum’s coming too. I’m so glad, I wouldn’t be going if she wasn’t going to be there. I hate going out with my dad because he perves on waitresses then looks pleased with himself, I’ve spent so much time not saying so much to him that I now have nothing to say at all and I don’t like the way he behaves with John. When I think about how he is with John I get really sad and that along with a couple of things my mum has told me he’s said…
I just have nothing to say to him anymore.
Something kind of kewl did happen this morning though. As far as the whole Hugh front goes my mum still feels bad and isn’t sure that she did the right thing. I keep saying all the stuff I know is right but I don’t think she believes me yet. Hugh keeps saying stupid things to her on the phone which she thinks are him being sad but anyone that isn’t her can see are immature and manipulative.
ANYWAY this morning she said that when she told him she didn’t think she could cope and there was no one to help he said “I’ll look after you.” And when he said that, she thought “But you didn’t, did you?” which hopefully means she is beginning to realise that everything he says is utter bullshit.
One final rant, then I’ll bugger off, I promise.
So, there’s this lady down the road from me who is incredibly lazy. She treats her partner like crap despite the fact he is actually one of the extremely rare genuinely nice guys. She has a job where she has to clean for like 2 hours a week but she can never be arsed so he does it for her. He (her partner) was made redundant a couple of months ago and has been trying unsuccessfully to find work ever since. All she does is go on about how crap he is because he doesn’t have a job. They don’t even have to worry about anything financially because her mum always bails them out.
So.. yeah. She also has 2 dogs that despite the fact she has nothing else to do will never walk. She feeds them on chocolate all the time and hits them when they misbehave, which they do a lot because they are hyper from the excessive sugar and never being walked. One of them died a few weeks ago from heart problems and we found out this morning that the stupid woman has gone and bought herself a puppy.
Her other dog is a collie and he is overweight. Collies don’t get over weight when they get older so it's all her fault. The poor dog is ridiculously anxious, when you put your hand towards him to stroke him he thinks he's going to be hit and winces and he's so hyper all the time. Earlier in the year he was having seizures and she never took him to the vet.
She can’t look after a puppy. I don’t even want to think about what she’ll do to the poor thing.
My mum is going over there at some point in the next couple of days because it was the woman’s birthday. I might go over and offer to walk to dogs. I don’t think she’ll accept, I’ve offered in the past and never heard anything back.
She moans about so much stuff, but she has no actual responsibilty.
So many people in this village never walk there dogs or leave them on their own all the time. There’s this other dog called Bracken and her owner works all the night. She leaves Bracken outside most of the time so Bracken always leans over the wall so people going by will fuss her. The poor dog is so lonely she tried to follow me and John home the other day
This morning I sat down for about 3 hours and read Holes by Louis Sachar. It’s an amazing book. The writing style in it is quite unusual and simplistic, which took some getting used to but once I was I couldn’t put it down. Which, you know, explains the not moving for 3 hours until I’d finished. I sat there in my pyjamas and let the world go by around me while I read. I love it when I have that. When I find a book so good it makes me forget about all the stupid crap I think about and gives me enough peace that I can just sit there and read. I haven’t had that since I read the first of the Noughts and Crosses series and that was months ago.
I don’t know exactly what it was about the book that was so captivating. When you’re reading it for the first time, it is supposed to be a complete mystery but I knew how everything fitted together because I watched the film a couple of days ago. Somehow though, this didn’t matter. I guess it’s because the way everything adds up in the end is so clever. You have to really concentrate on everything that you read because it is all somehow vital to the bigger picture. Even the smallest thing is important.
Throughout the book three stories are told. The story of the Yelnats family (the main character, Stanley’s family), the story of Stanley and the story of a woman called Katherine Barlow. I’m not going to say anymore than that.
I would also strongly recommend watching the film; although I think reading the book first would probably be better. I’ve watched the film twice because there were distractions (mad two year old and grandmother) on my first viewing. I don’t know if watching twice is required for everyone, but I certainly found I got more out of it second time around. The acting in it is brilliant (Jon Voight, Shia LaBeouf, etc) and most people fit the descriptions in the book pretty well.
And that would be it. I have got so much to read at the moment since my aunt lent me a Neil Gaiman book, I can’t go to town without looking in the library and I had a Oxfam/Waterstones splurge yesterday.
So far on my list of Haven’t Read Yets are:
Stardust by Neil Gaiman (Aunt lent me it)
The Game Of Triumphs – Laura Powell (Got this from the library. It looks kind of
good but I don’t know if I can be bothered)
The Gargoyle – Andrew Davidson (Oxfam yesterday.)
The Princess Diaries – Meg Cabot. (I’ve read this already but I saw it in Oxfam for
99p and I didn’t have a copy so…)
Generation Dead – Daniel Waters (I was talking about this yesterday. I saw first a few
months ago and thought it looked it. I got it from Waterstones yesterday but now I’m
not sure if it isn’t a bit Twilight-ey.)
Black – Ted Dekker (I was given this by a book shop my mum did a reading at.
Again, I don’t think I can be bothered just now. It looks a bit heavy.)
Frederika – Georgette Heyer (In the end I really enjoyed The Devil’s Cub and this
was another 99p purchase…)
Forever – Judy Blume (I was reading about censorship the other day which made me
want to read something by her. Plus this book just looks really, really good. I’ve
ordered it from the library. Someone else had a reservation on it first though, so it’ll
be a while.)
Sorry, I know that this won’t interest anyone other than me. I just get excited about books.
I just watched Elizabethtown. What a pile of crap. What a waste of 2 hours and 40 minutes of my life.
I was getting so frustrated as I was sitting there. It was like they were trying to do something Garden State-esque and it wasn't working. Then, I get the even more frustrating thought that maybe it did work and I didn't get it. That idea is very depressing, because if it is the case then I just missed out on something that would make me feel better. I am angry with it for leaving me still feeling like crap. I did not do the job that He's Just Not That Into You did yesterday. That film was a distraction. Elizabethtown? Nope. Also, what was wrong with Kirsten Dunst's accent? One minute she was really southern then she was normal voice then she was southern again. In the end she was just southern on certain words.
The whole plot just lost me. I did miss bits of it through John yelling though. Maybe I missed the moment when it all started to make sense. Maybe when John was yelling the point was.. defined. Or something. The road trip bit at the end goes on forever. I thought it was never going to end. It was so boring. Usually, the end of films make you feel good. Unless it's sad or something. But, actually, crying at films is fun.
Something interesting happened today. Hugh rang like 5 times between 8 and 9am and my mum did not pick up once. I think it's partly because she was in a bad mood. We both were. John had one of his getting up every 2 seconds nights so neither of us got much sleep. But still. Her poor misunderstood friend phoned and she didn't pick up.
I wonder if it's anything to do with what we talked about yesterday. I kind of hope it is.
I also don't want to be a lonely un-sociable person for the rest of my life. I would like more than one person to care when I fall out of touch for 2 weeks. The fact that one person cares is enough really. But then I get mad at her because I don't want to talk to anyone, and her texting me and my ignoring those texts makes me feel guilty.
Went book shopping today. I got something that I hope is good but on second look appears slightly Twilight-ey. Please no. I have had enough of that whole franchise.
I don't even know why I'm miserable. What is wrong with me now? Really?
I've had a pretty good day so far. I was annoyed when I woke up because Hugh rang at like half past seven and although he's always done things like that I thought that since now he is her ex he might have learnt some manners. Obviously not. I don't know why I even expected him to.
This morning because her friend is working and John is watching cars all day my mum didn't have anyone to go to church with her so I said I'd go because going seems to make her feel better about everything. We were really late though, so we didn't go in the end but went and had coffee instead. I think that was a good thing because it gave her the chance to relax a bit. Lately, 'cause she has had so much work and Hugh and everything she says it's like she doesn't have time to have a life anymore so I think this morning was kind of over due. And aside from the whole break up thing someone drove into our car again yesterday so... yeah. She needed to relax, basically.
We went shopping too. Well, not shopping shopping but we got some candles and stuff to make the house smell nicer. I got one made of honey comb for my room. When you sniff the candle itself it smells really good but so far I don't think burning it is making much difference. Just to make it clear now, lol, but room doesn't smell bad. My room smells pretty good most of the time. A combination of hair products and jasmine. John's room on the other hand...
Oooh, also, I saw a really good film called Holes last night. It's based on a book that I haven't read yet and it has a younger Shia LaBeouf in it. Like, just after Even Stevens kind of time. I got it more the second time I watched it because I wasn't half focusing on a mad two year old but seriously, it is really, really good. My aunt told me that it sticks to the story of the book really well and the guy who wrote Holes the book wrote Holes the screen play. I would really recommend it .
I am now going to spend the rest of the afternoon watching my rented DVD, He's Just Not That Into You. Yeah, yeah chick flick I know but I couldn't be bothered with anything particularly heavy although I did notice today that they have The Reader which I want to see a lot.
I have no life. Right now, this is personal choice. Well, sort of anyway.
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