The Cupboard Of My Soul

Photos Catch Up - 20th - 31st January

2012-01-31T10:08:00.000+11:00

I've been busy and sick so my daily photos are delayed, trying to fight off a kidney and ear infection at the moment so not feeling really great. Hope you enjoy the photos, still been taking photos, missed two days though.

21st January 2012 - Foot

22nd January 2012 - Cactus

23rd January 2012
Trees at the Park

Sunrise at the Car Park

Birds at the Car Park - I don't remember what they are.

Dreamer in the Car

24th January 2012 - No Photo

25th January 2012 -Lamby - a Gift from Nate a few years ago, she is all ready for the weather with her raincoat, was raining.

26th January 2012 - No Photo

27th January 2012 -Twilight Barbie - Victoria

28th January 2012 -Mini Mannequin

29th January 2012 - Dreamer in the Laundry

30th January 2012 - Howls Moving Castle Keyring Figurines

31st January 2012 - Go Go's Crazy Bones

Photos 20th January 2012

2012-01-21T16:22:00.000+11:00

Dreamer with Nate

Trees and the Moon

Dreamer in the car

clouds

Dreamer in the car

Birds in the car park

Clouds again

Photos - 18th and 19th January 2012

2012-01-20T13:17:00.000+11:00

18th January 2012
Styrofoam, the one sound I cannot cope with, the sound of it just makes my whole body chill and makes me grind my teeth from the sound, I have to get Nate to remove anything that is packed with styrofoam in another room at the other end of the house with all the doors closed, that is how bad the sound is for me.

Dreamer in the Bedroom giving his "look"

19th January 2012
Sweet Potato Fries - Yummy but not good on my tummy!

Dreamer in his Crate

Photos Catch Up -10th -17th January 2012

2012-01-18T13:50:00.000+11:00

10th January 2012 - Friendship Amulet - To bring Love & Friendship

11th January 2012
Before the Sunrise

At the Park

Dreamer in the Car

Crow in a Tree

Turps, Gloss Spray and Tealight Holder

Dreamer trying to understand the New Printer we got for my Scrapbooking

12th January 2012
At the Petrol Station

Dog in the back of a Ute

13th January 2012
Bird in the Backyard

Cadbury Creme Eggs

14th January 2012
Grapes

Melon

15th January 2012 Cabury Creme Egg

16th January 2012 Doll

17th January 2012 Morning Medications (half of it)

Photos Catch Up - 10th January 2012

2012-01-14T12:57:00.000+11:00

Dreamer at the Park

Trees at the Park

Sunrise

Eucalyptus tree at the front of our house

Tuesday 10th January - This post is a day late.

2012-01-11T19:45:00.000+11:00

Took Dreamer for a walk this morning, still can't get him to focus on a loose leash but we haven't worked on that either, he thinks every dog is his friend and doesn't understand that he can't go play with every dog he sees, something really have to train him for. He is looking at me whenever he sees a person which is good, he knows that a person means treats because I want his focus on me as much as possible but I don't train him the whole walk, I want him to be able to sniff and relax a bit and get his energy out.
Started back with the levels training again, only did one session today, have to do more and get into the leading the dance with him, Nate is going to help me get a schedule up to do that so I can check off what has been done each day, need to get him seeing me as his leader. Had trouble with dinner, just couldn't get him to do a back up which means he doesn't understand the behavior completely so have to get to the stage where I can train him as to what it means properly, seems like so much but I want more from him and he loves getting things right, he needs to be stimulated and have his mind working.
Put my back out today so that's why this will be a day late, can't control health problems unfortunately.
Don't know when I'll be able to upload my photos still in a lot of pain, hopefully tomorrow.

Posting - 9th January 2012

2012-01-09T19:14:00.000+11:00

I had this idea that I couldn't post everyday if I didn't have anything to say and I only realised today that I can just post my daily picture if that is all I have to post, so that is what I am going to do. I didn't have much to say over the weekend and last few days, and almost didn't post again today till I realised I can just post my pics, so here are the last few days of photos:

7th January 2012 Soap in a soap Dish - Soap from Outback Pampering They are awesome so go buy yourself some!

Dreamer

Battlestar Galactica

8th January 2012
Headphones, not the greatest but they work

Dreamer not wanting to get up for anything, told you he was lazy!

9th January 2012 Runts

Nate and Xmas Cards

2012-01-06T16:53:00.001+11:00

Today we didn't go for a walk, it was raining and Nate was in a lot of pain. I understand it is a lot for Nate to take us out, he has to get a really heavy wheelchair in and out of the car for me to go anywhere and this causes him pain, he already has his own medical and back problems to deal with and then he has to take care of me. I see the pain he is in everyday and I wish I could do something, but I know most of it would be so much better with the proper equipment for me and him to use, electric hoist, wheelchair van and so on, it is a long list and it always feels so far away and it leaves us unable to afford much else, Nate never buys himself things, he wears shoes until the soles are falling off, he never buys himself clothes, or anything else, I try sometimes to buy him stuff but usually he tells me he rather I spend the money on something for myself and that is part of what makes him the best carer in the world.

We got two christmas cards in the mail today, along with one from a sweet friend, but I am going to talk about the two cards we got, one was adressed to me and Dreamer and I cannot tell if it was addressed Ms or Mr, I can only hope and assume it is Mr, because Ms would totally make me question the friendship altogether. Then there was one addressed to Nate, now here is the problem. These cards are from friends of ours, they are having relationship problems and have almost seperated but have not actually seperated for reasons Nate has explained but I will never understand. Now it is fine to recieve seperate cards from them if that is how they are now, the problem, me and Nate are not breaking up, having relationship problems and no matter what the only way we would seperate is if one of us died, yes even if we no longer were having a sexual relationship we will always, always be together, because we are first and foremost best friends then lovers. Now why the hell was there not the cards addressed to me and Nate both together? This really really bothers me. We are together, have been for a long time and will be forever, what made them think that it was ok to send cards to us seperately? I am thankful for the cards, sure, but this just puts it onto one more thing on a long list of what is wrong with the friendship.

Photo: Another of my Barbie Dolls, Twilight Jane, This photo doesn't really show how nice she is in real life.

Memories of RB

2012-01-05T15:06:00.000+11:00

Do you remember when you got that pacman toy and I wanted it? And you said you would share it and you would make it go as much as I wanted, I could have watched that toy for hours and you didn't care, you were so happy to see me interested in something with you.

Do you remember that night he beat me so bad that you couldnt take it anymore, so you stepped in front of me to protect me, only to get beaten yourself, do you remember?

Do you remember when I wanted that ballerina and I didn't have any money, because I never got anything and you wanted so bad to get it for me, you tried so hard to win the game but you just couldn't do it. You thought I was upset, but I wasn't upset with you, I was upset that I never got anything and that wasn't your fault, it was hers, always hers.

I felt wanted then, but then everything changed, everything always changes.

Do you remember when you changed, when you no longer wanted your friends to know who I was, you were embarrased by me and you showed it in every way you could, you grew up and I lost you to your friends. You were always so popular, and you always got everything, you were the favourite, until RT came along, even then you and RT were always more than I could have ever been to them, you were the normal one.

Do you remember when you had come for a visit after you had moved out of home, and you told me to get away, get away and stay away as quickly as I could? I listened to you, and I tried so hard, but it never mattered, I was always taken back, and you knew, you knew it all then. Why didn't you tell me? Why didn't you tell them, they could have saved me, taken me somewhere safe, but you were afraid, you never told anything, not even to me.

Do you remember when I talked to you after I had met Nate, and he had helped me communicate, and I told you what happened, and you said you knew, you knew, she always put sleeping pills in our bottles for bedtime, you knew, but you never said anything, all those years of pain and abuse, and you knew. You only told me because I told you, because I brought it up, how could you know and not do a thing? You could have helped me, you could have done something, you knew, but you didn't do a thing, you just left, left me behind to take it all, left me behind to learn it all on my own. I was in pain, I had memories coming back that I couldn't understand and all this time, you knew.

Do you remember what you told me? Do you remember that you knew, everything you knew, and yet still you went back, you went back and I could no longer talk to you?

I lost you, forever I lost you.

5th January 2012
the sky this morning at home

The sky this morning at the park

Dreamer in the Car

My Captain Jack Sparrow Barbie Doll

4th January 2012

2012-01-04T17:58:00.000+11:00

Today took Dreamer for a walk a bit earlier and I think that was a lot better, less people there and the people that were walking their dogs had them on a harness or leash and actually kept walking or moved their dog away from me working with Taite which was nice, one dog was really pulling the owner around on the leash, and tried to pull towards Taite, the owner wasn't doing a good job of holding it back either, really needs proper training, but as we left saw a lady walking her German Shepherd and she had it completely trained on a loose leash which was lovely to see, I don't see any other dog there being on a loose leash, was nice to know someone else trains their dog.

Went to the shops again, got some craft stuff so I can almost finish the stuff I have been doing, was waiting in the car at the petrol station, it was really hot and I had my window down and I was looking at the sky and trees thinking and daydreaming waiting for Nate to come back from paying for the pertol and this lady just suddenly screamed at me "What are you looking at" from her car and then burst out laughing, I did not find that funny at all, it scared me so much, I quickly wound the window up, but I was in tears over it, it was just a complete shock to my system. Thankfully Nate had bought icecream which was great to calm me down. Couldn't really find what I wanted at the shops though which was kind of dissapointing today.

Went to spotlight to get decoupage glue, the lady at the counter the price come up wrong, the glues are on special and it didnt come up as the special price so Nate had to push her to check that it is the special, she asked the other worker next to her if they were on special and the lady she asked just said nup, so she wasnt going to put in the special price, nate pushed her to ring and check but she walked over and checked, there was another lady there that had also been overcharged on something she bought too. Seemed like none of the workers knew what they were doing today.

Came home to play with a mini rotary tool kit Nate bought me, only to find that I cant work it and we can't get the bits to lock into the tool, Nate is going to take it back and get a refund, there is another one that I think would be good from reviews but have to wait to afford it as it costs more. It is upsetting when something you look forward to doesn't work.

Well, that is my day today. Here are some pics for today:
Dreamer at the park

Birds on the electricity line on the way home

Dreamer in the car when we got home

At the Park then Shopping

2012-01-03T18:18:00.001+11:00

This morning we got up early and went to the park, hopefully a daily thing now for Dreamer, he needs the exercise and to loose some weight, At least he isn’t completely fat but I like him to be in top condition before I do anything intense with him.

Some Photos from the Park:

3rd January 2012 Sunrise behind Trees

Sunrise

Sunrise 2 just liked this one too.

Video showing some of Dreamer’s commands at the park, but not everything he knows and not all perfected either, still need to get into training and work with him, but considering I haven't trained him in a while, he did pretty good..

http://youtu.be/pYxtX2WpeDc

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Dear Dumb Lady at the park today.

We had a good walk and a good training session, until we got to the car and your dogs were off lead. When confronted about it and told it is the LAW that your dogs be on lead in this park, and in all of the area we live in unless it is an actual off leash area, just a hint, the off leash area has a sign and your dog MUST at ALL TIMES be under control, yes even on lead too. This park is not a designated off leash park, you denied your dog was off leash, probably a technicality because,

1- Your dog was on a lead, but that lead was a retractable lead and not in any way attached to your hand until you were confronted and not reined in at all the time we saw you approaching us.

2- You had absolutely no control over your dogs and it almost bit Nate, if it did, do you know where your dog would be now? Dead, that is right; your dog would be DEAD because it bit someone with no provocation whatsoever.

3- I have a DINOS, (dog in need in space), that means no matter what you DO NOT go near the car, this only makes my dog react and get stressed, get the hint, Barking means GO AWAY and STAY AWAY, yes I am shouting at you because if I could I would have given you a good slap upside your head for your stupidity but of course I can’t because that is assault and I am not a violent person.

4- Your dogs almost pissed on our car, that is not acceptable, never ever let a dog piss on someone else’s property, it might not be a great car, but it is our car, it gets us where we need to and we love it. So keep your dogs urine where it belongs, on the grass or a tree not on our car, of course if you could actually control your dogs then this wouldn’t be an issue, at least my dog urinates on command and is only allowed to go where I tell him to go.

5- If you weren’t completely stupid my dog wouldn’t have been barking at you at all, keep your leash short and your dogs away from other dogs or people, an altercation if my dog hadn’t already been harnessed into the car could have ended up much worse, for all our dogs.

6- And finally thanks for almost ruining a good morning, I say almost because I won’t let your stupidity bring me down from what was a good walk. I am sure I probably could have said a lot more, be thankful I didn’t have my communication device with me and Nate had to speak for me, because you would have gotten a lot worse than what was said today. Look it up, learn the law, it is right there, I learnt it and it isn’t so easy for me to learn, if you own any animal so should you.

To All Dog Owners, Please keep your dogs under control, and pay attention to others, if they don’t want to be approached it is likely for a good reason so back off, and keep walking keep going and leave us to train our dog in peace. Not everyone wants to meet you or your dog and often times it just distracts completely from our training and we have to go back to step one, yes all that work ruined because you couldn’t take a hint and keep going. To those good an respectful dog owners I know, thanks for being a good dog owner and respecting others.

Some Links about DINOS:

My Dog is Friendly DINOS post

http://notesfromadogwalker.com/2011/12/01/my-dog-is-friendly/

Post on Retractable Leashes

http://notesfromadogwalker.com/2011/12/16/retractable-leashes/

Resources if you have a DINOS

http://notesfromadogwalker.com/2011/12/14/dinos-resource-guide/

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After that incident, we went home, fed Dreamer and relaxed till the shops opened to get me some candles for a spell, we got a lot of other stuff cheap too and it was good, really happy with what we got.

Three pictures of what we got:

3rd January 2012 Earrings Nate bought me to replace the stud that I lost, which I am upset about and hope I find it but am not keeping up hope for it.

Magic things we got today and saved heaps on

Petticoat Nate bought me

Dalmatians

2012-01-02T17:03:00.000+11:00

When I was waiting for Dreamer I got given a lot of advice about Dalmatians and it was very annoying. Most of this advice was not true at all and just myths or stereotypes about Dalmatians. I had to educate some people but some people just would not listen, so here are some of the myths and some things I love about Dreamer.

*Dalmatians are aggressive.

No they are not, any breed of any dog can be called aggressive but usually they are fear aggressive and it is the owner's fault in not training them properly. If a dog is fearful it can be fear aggressive, this does not make any particular breed aggressive and it is not true of Dalmatians. Dreamer is not aggressive and wouldn't be with us, especially me if he was aggressive in any way. If you learn about a dogs body language and see what they are saying a lot of this can be avoided.

*Dalmatians are stupid.

Dalmatians are incredibly smart, Dreamer is always thinking, figuring out things, and learns things faster than other dogs I have owned.

* Dalmatian's can't be trained, are difficult to train.

Dalmatians are rather easy to train, if you use positive methods and show them you are the leader. Dreamer is easy to train, picks things up quickly and remembers them easily even if it has been a while since asked to do that task or trick. They are very smart and energetic dogs and that energy is really useful when training. Of course I have only ever trained any dog of mine positively and with clicker training, teach the dog what I want you to do instead of what I don't want you to do and that works really well. Dreamer is always excited when I train him because I have taught him that nothing bad will happen and he can think and figure out what it is that I want. There are even some Dalmatian Service/Assistance Dogs, and a Guide Dog that I know of and Dreamer is my Assistance Dog at home currently and hopefully will get approved for public access this year.

*Dalmatians are hyperactive -

This may be true for some dogs, but this can happen in any breed. I choose a specific puppy from the litter and Dreamer is not hyperactive at all, he has energy to burn sure, Dalmatians need long walks or runs like any dog but hyperactive isn't a problem with Dreamer, in fact he is rather laid back and sometimes very lazy and has much of the personality traits I have which works well for us.

*If you are disabled you shouldn't get a Dalmatian because they are energetic and wouldn't be good around a wheelchair.

This was something that came from breeders mostly and something that goes more into stereotyping disabilities. If you are an active person in a wheelchair I don't see the problem, if you are frail, or don't have the energy for it then sure it may be a problem, however I have always been an active person and like being active and there was nothing about me being in a wheelchair or being disabled that has made anything difficult for me having Dreamer as a puppy or even now.

That's all I can think of at the moment but if you google Dalmatian Myths you will find a lot of them.

Things that are true about Dreamer and possibly Dalmatians in general -

*He can be sensitive. This is why positive training methods are better to train with. This is also not just in personality but he has sensitive skin and allergies.

*Dalmatians need a low purine diet because they can form urate stones, this is more common in males than females. Dreamer had emergency surgery for a blockage from these type of stones last year, it was scary and we almost lost him and were really lucky we had a great vet and pet insurance, we saved a lot of money and he made it through. We have to monitor his urine everyday to make sure it isn't too high or too low in PH levels. More about that on this website: http://www.marvistavet.com/html/body_uric_acid_stones_in_dalmatians.html

*He is good at Dog Sports - I think most Dalmatians trained right can be good at anything, I know Dreamer will be great at any dog sport because he is an eager learner, loves to please and has the energy to go as long as needed. That is not to say that all Dalmatian's will enjoy it, not every dog enjoys everything and every Dalmatian will have their own personality on what they enjoy. Dreamer gets bored if we do obedience for too long and it becomes really noticeable the point that he is bored of it. With something active like agility, tricks, dancing etc, Dreamer can't get enough of it and I have to quit before he does, he loves to do active things.
*He does funny things everyday. He can be a clown, he is always making us laugh.
And finally, he is the best thing to happen to me apart from meeting Nate.

Photos: 2nd January 2012 - In Both these photos Dreamer is using calming signals, can you see them?
Dreamer today wanting cuddles:

Dreamer in drop position because he thinks this will get him treats.

Welcome the New Year - Hope it is a Good One!

2012-01-01T19:31:00.001+11:00

It's a New Year, I hope it's a better one for me as last year wasn't so great. Towards the end of the year I had to make a really hard decision but I think in the end I am ok with what I decided. I had my last testosterone injention on the 19th December 2011 and it is the last injection I will have. The testosterone will remain in my body for 12 weeks from that date and then slowly my body will go back to producing it's female hormones. It took me a long time to be approved for testosterone therapy and I don't think I would change a thing, it was a journey I had to take, a road that taught me important lessons. I am more comfortable with my body now, I am prepared for how it will change when I am no longer on Testosterone and I am ok with that. I am intersexed, I identify as Gender Fluid, it can be hard for people to understand my gender identity of being neither male of female but both or none depending on the day or my mood. I will always have female anatomy with some differences, I will always be hairy, I may always be called or mistaken as female even though I prefer male pronouns, but I am ok with it all I think. It was a long journey and a spiritual path for me, but I became myself and I am happy this way. I look forward to the testosterone leaving my body and seeing the changes that will bring me and adjusting to the way things will be.
I am getting back into my spirituality, my paganism, witchcraft, spells and magic, another thing that a lot of people don't understand either but for me the time is right for it. I lost it for a while but I feel stronger now and confident enough to get back into it.
I really want to get back into crafts, there are some things I am interested in doing but I can't because we don't have the money or the supplies but I hope that we can get some throughout the year while we are saving for a van, this year will be hard moneywise because we need as much money to go into getting a van so I can get proper wheelchairs but I think it will be good once we get there, it is something to look forward to.
I hope I write more this year, I hated that I wasn't writing much last year but I was so sick most the time and had so much going on it was just really hard to do.
I have something to exercise with now, and the times I have used it it has felt really good to do something physical, I miss being really fit and physical like I used to be, but I hope I can get fit enough to do an endurance trial with Dreamer on my own, I will have to afford a good handcycle or all terrain wheelchair to do it but it is something I have wanted to do with Dreamer for a while and I hope I get myself fit this year.
That's all for today. Hope everyone is having a good New Year and coping with the holidays okay.
Titan

Photo: 1st January 2012 Box of Assorted Pens, Pencils, Markers etc

December Photos Catch Up

2012-01-01T10:43:00.000+11:00

2/12/2011
Gilmore Girls on the Computer

Dreamer

3/12/2011
Elephant mobile

Dreamer

4/11/2011
Me

Giving Dreamer a treat

pink meringue

5/12/2011 mango

Dreamer

transformers on computer

7/12/2011
Medicine and Food

Blue Meringue

Triple Choc Fudge Cookie

8/12/2011 Dreamer

9/12/2011 Dreamer

10/12/2011 Dreamer

12/12/2011
Sewing

Unicorn Lights

13/12/2011 Notebooks

14/12/2011 Rocky Road Squares

16/12/2011
My computer screen

Dreamer

19/12/2011
McDonald's McFlurry - Fudge and Bubblegum together

Sky

Tree, Flowers and Plants at the Hospital

table and Chairs

Tree, Flowers and Plants at the Hospital

Hospital Room

tree on the way home

Road flooding

driving through flood part of the road

Road flooding

Backyard wet

Nail things

Nail Polish Remover

Cuticle Sticks

3 in 1 Nail Polish

Dental Floss Harps

Katy Perry - Teenage Dream CD

Tonight Alive - What are you so scared of CD

Giraffe Earrings

Necklace

Jojo and Coco bag

Kiki's Delivery Service DVD

20/12/2011
Popcorn

Magarita Pizza

Cheese Pizza

Pizza Slices

Margharita Pizza Slice

Cheese Pizza Slice

21/12/2011
Snacks

Exercise Peddler - Xmas Present

Spider in Nate's room

Dreamer in his crate not wanting to get up

22/12/2011 Cooling Do Rag

25/12/2011 Sparkling Apple drink

29/12/2011
Fidget ball

Nate's Coke drink

Ravioli

30/12/2011
Way too expensive Banana Thickshake

Nate's can of coke

Dreamer

Cherry Drops

November Photos Catch Up Part 5 of 5

2011-12-28T12:50:00.000+11:00

22/11/2011
Cd's and iPod and speaker

23/11/2011
mountain dew

7up

KFC chips

KFC bacon and cheese burger

KFC spoon, straw and serviette

McDonald's

Dreamer

armband iPod classic case on special

Passion Book

Magazines from JB hi fi

25/11/2011
Envelope for my Dynavox Vmax screen protector

Dynavox Vmax screen protector

Evie with the Screen protector on

Dreamer

Dreamer's sweet potato treats

26/11/2011
key ring string man

27/11/2011
Dreamer in his crate

28/11/2011
Dreamer in the car

stockings

Dreamer's Nylabone

29/11/2011
Dreamer letting me pat him

November Photos Catch Up Part 4 of 5

2011-12-28T12:47:00.000+11:00

21/11/2011
sunrise

burst tap at park

dreamer at the park

new towel

new flannels (I use these for drooling)

new singlets

iPod Classic - my Xmas present given early so I can use it

iPod Accessory Kit - my Xmas present given early so I can use it

new flannel

Dreamer checking out what is going on outside the front door

Dreamer

iPod Classic - my Xmas present given early so I can use it

Dreamer

iPod Classic - my Xmas present given early so I can use it

Dreamer

November Photos Catch Up Part 3 of 5

2011-12-28T12:43:00.000+11:00

15/11/2011
Dreamer's cool coat

Dreamer not happy about modelling the cool coat

16/11/2011
sippy cups

17/11/2011
mouses glowing

Dreamer

NCIS disks

19/11/2011
Bubble Gum Icecream tub

Dreamer

20/11/2011
Chocolate

Lost on the computer screen

unicorn lights

jelly beans

calm down book

chips

ooze tube

Dreamer

November Photos Catch Up Part 2 of 5

2011-12-28T11:57:00.002+11:00

7/11/2011
Training Levels Books

Mouse

Tinkerbell DVD

NCIS DVD - new one because first one was faulty

Gilmore Girls DVD

9/11/2011
Dreamer trying to get food

Dreamer

10/11/2011
lemonade Jelly

toothbrush head from my toothbrush

11/11/2011
wall to the right of my bed

lemonade ice block

12/11/2011
Dreamer

Dreamer's peanut butter cookie treats

Dreamer

14/11/2011
Dreamer

ooze tube

Dreamer

November Photos Catch Up Part 1 of 5

2011-12-28T11:04:00.000+11:00

1/11/2011 Dreamer

1/11/2011 Fidget

2/11/2011
Dreamer Eating

3/11/2011
SM33 Gel

Scratchies

USB storage sticks for MightyMo

Dogs NSW magazine

NCIS DVD - was faulty

Gilmore Girls DVD

Dreamer

4/11/2011
mini cupcakes

the wall to the right of my bed

Dreamer

Scary Spider in the hallway

Deodorant

Christmas and Friends

2011-12-18T12:44:00.000+11:00

I don't really celebrate Christmas. It may seem like a strange thing to say from past posts etc but I don't do it for me. I was brought up with Christmas, the only time of year I ever got anything apart from my birthday, and most the time it wasn't anything I wanted except for once when I was 10 and some other family member gave me a radio and the same year when my step-dad gave me a trampoline, apart from that I never really got things I wanted and not really being able to communicate what I wanted it didn't help. I learnt over the years what it was about and I was into religion for a while but it didn't fit me, later discovered that the only way to identify what I was as pagan, I'm not into wicca or any of that I just have my own beliefs and do things with spells and tarot cards and things that I believe in. I guess spiritual is the best way to describe it. I never felt right with these holidays that are celebrated, but I understand what they mean to others and that others enjoy them for certain reasons. I know Nate celebrates some holidays, I am not sure why, I don't entirely know what his beliefs are and what drives him to celebrate these things, but I love him so I celebrate them with him, for him. For me I don't believe in them, Christmas is a time of giving, but I believe giving is all year round, not just one day of the year. I don't believe in the bible or the meaning of Christmas in the religous ways. If you look up the shocking truth about Christmas or the truth about christmas on google, there is a lot of information there about the origins of it and what is bad about it, I got one of these links on my Facebook not to long ago, but I cannot find it right now to put it here, what I read made me really sad, and truth is I didn't feel any different because Xmas isn't really my thing. I have my own rituals and things I do to celebrate life, and nature and other things personal to me.
I don't have family, and friends don't really give me stuff either so it really makes no difference to me, Nate gives me stuff all year round when he can afford it after saving up for a long time, or finds it on special really cheap or can get it second hand somewhere. We are really poor so we don't have or get a lot of stuff and I am grateful for what we do get when we get it. I'm glad we have a roof over our head, but the rest of it, I don't think we really get much out of it, Nate can barely afford to eat on his own, I am on formula meals which isn't really cheap to get, but even without that, we don't really get much left over from our pays after bills and things.
I found it interesting that last year we got a lot of Xmas cards, people sent gifts and things, and this year we got one Xmas card, not sure what that really says about us. I guess that doesn't bother me though because I think real friends would think of us all year round and interact with us etc, but it seems some people only think of other people once a year and that bothers me. I don't have people that interact with me very much, I try making friends and I am recently trying to interact with people on some websites hoping that it will lead to good friends but at the moment, I don't have someone I can really call a good friend yet, what I mean by that is someone that interacts with me, talks to me, understands me and wants to know me and accepts me as I am with my flaws and all, and I do have flaws, a lot of them but they are a part of me and no matter how bad they are I love myself as I am all the same. I think I have come a long way from where I used to be and I am proud of where I am now, I wish there were others to be able to celebrate that with me.
So I guess what I have been trying to say, Xmas doesn't ultimately matter to me, I do it for the love of the people in my life who believe it and love it, and that is the best that I can give.

I'm Sorry

2011-12-15T11:03:00.000+11:00

I'm sorry I am so sensitive
I'm sorry I get upset at the little things
I'm sorry I can't understand the social rules of things
I'm sorry I cannot stand the use of the R word in any form
I'm sorry that I think fucktard is a derivation of retard, the re is just replaced with fuck re-tard fuck-tard, same thing to me
I'm sorry that you are so low in your self esteem you think you are a bad person
I'm sorry that when I bring this up you think I am attacking you
I'm sorry that you can't see I give everyone a chance because I know people aren't always aware of hurtful words
I'm sorry that when I was commenting on the title of a page you thought I was saying something against your character
I'm sorry that I am disabled and cannot always deal with things well
I'm sorry that I need Nate to help me with things that I don't understand
I'm sorry that I can't always see what I have done wrong
I'm sorry that whenever anyone uses the words, retard, retarded, fucktard, tard, to mean something bad or stupid I cry
I'm sorry that whenever I speak up about words and things that discriminate against people with disabilities I am not just speaking for myself but for everyone intellectually disabled, autistic, and others with many other disabilities
I'm sorry I think the word retarded etc should only be used to mean the definition of the word and not bad or stupid
I'm sorry that I think words used to describe disabilities used as bad words leads to hate of disabled people
I'm sorry I have suffered with bullying, hate and abuse my whole life because I am disabled and noone has seen me as a valid part of society
I'm sorry I feel like I don't belong in this world because I almost always get excluded from everything
I'm sorry I am not responsible for how you feel about yourself nor are you responsible for how I feel about myself
I'm sorry there are groups that actively try to get the use of these words removed from facebook, the internet and everyday life because they are hateful words towards people with disabilities
I'm sorry that I think my voice should be heard and my feelings are valid because I have been taught such after a lifetime of being made to feel neither of these things are acceptable
I'm sorry that you thought you were being respectful of disabilities but still thought the word fucktard was ok which to me was still disrespectful of disabilities
I'm sorry I even had to use these disgusting to words to describe my experience
I'm sorry to everyone disabled in whatever form that gets bullied, teased, abused, and hurt by others who just can't understand, it is never ok
I'm sorry that you assumed you weren't worth talking to because I had an opinion about hurtful words towards the disabled society
I'm sorry that I should even have to say sorry because really, should I have to be sorry about these things?
I'm sorry.

Photos Catch Up - October

2011-12-03T19:10:00.000+11:00

3rd October 2011 Nate's stitches from a mole cut out

5th October 2011 Dreamer in the car

10th October 2011
Nate's stitches from another two moles cut out

MightyMo Nate got from Ebay for me really cheap

Bag given with the MightyMo

11th October 2011
Dreamer in the car

Things bought for Dreamer

Dreamer playing with his rope toy

12th October 2011
Infin8 halter, treat pouch and treat pouch liner from Black Dog Wear

Plug thing

Dreamer in the Car

Dreamer after being brushed

Dreamer's hair after being brushed

14th October 2011 Dreamer in the car

15th October 2011
Dreamer on his Trampoline

Dreamer trying to get into the kitchen

19th October 2011
Eve Plushy

Dreamer next to my bed

21st October 2011
My pentagram necklace charm

My switch adapted call button

Dreamer in his Crate

Voltaren Gel

22nd October 2011
Earring Nate gave me one Xmas that seem to have lost.

24th October 2011
Hand Weights

Dreamer in his Crate

25th October 2011
Chinese Food

Cheese and Bacon Roll

Compact Flash Card for the MightyMo

Blue Fairy Dust

26th October 2011
Sausage, Eggs and Rice Dinner

MghtyMo

Dynavox Vmax aka Evie

27th October 2011 Mini Cupcakes

28th October 2011
Natural Ear Plugs

30th October 2011
Dreamer next to my bed

31st October 2011
Dreamer in the Car

Dreamer at the Park

Dreamer in the Car after the park

Hokey Pokey Ice Cream container

Medium on the computer

Migraine

2011-11-29T23:53:00.000+11:00

Today I woke up with a really bad migraine, I had to tell Nate that we can't walk Dreamer today because my migraine is so bad, I feel really awful about it. Dreamer kept trying to make me better and checking up on me, at one point he started licking my head and I had to stop him because it hurt. He always knows when we at sick and where we are hurt and tries to fix it, I love that about him. I stayed in bed all day trying not to move because when I did move it made the pain worse. I can't sleep right now because the pain in my head is so bad. I couldn't do anything today just played games trying to get my mind off the pain, I feel so sick, I want to vomit but I know there is nothing there to vomit, it would only make the migraine worse anyway. I get migraines a lot especially after a bad seizure, well all the seizures are bad but sometimes there are ones that are worse than the usual ones, we don't know if I had a bad seizure because we don't have that seizure bed monitor yet so I probably had one last night. I hate being sick like this, most days I can find a way to cope, today being unable to do anything, even try to move it really makes me feel down. At least Dreamer and Nate did all they could to help me, I don't know where I'd be without them. Titan.

What my Day is Like

2011-11-28T17:00:00.000+11:00

Last night I went to bed at 9:30pm, I couldn't sleep because I had bad pain and nausea; I had eaten too much during the day. I played on my iPad and listened to music on my iPod to hopefully calm me down. I went to sleep at 11:30. At 12pm I woke up with the hiccups, they come hard shaking my whole body and hurting my chest and ribs, I feel like I can’t breathe. I eat three jelly beans to try and settle them, it doesn't work, I go and get chocolate out of the fridge and that settles them, sugar usually helps, I always have jelly beans or a spoonful of sugar but recently found chocolate helps and is one of the few things left I can eat without feeling sick. I went back to bed I was tired. I woke up several times during the night. I have nightmares, night terrors, I stop breathing during the night, and I have trouble getting back to sleep after waking up.

At 8 am Nate wakes me for my medicine, I feel like I haven’t slept at all. Nate gives me my medicine that he has prepared because I can’t do it. I start with a tablet in between ice-cream because of my swallowing difficulties so it is easier to go down, it can’t be crushed so has to be given this way. Then two tablets on two spoons crushed and mixed through ice-cream, they taste awful, I can feel and taste the powder in my mouth. I have a migraine and I feel sick, I have a vitamin D capsule, because I am really low on it, I wonder if it is even worth bothering, will my body even absorb it? Then an antibiotic because I had a tooth infection which comes from me being so sick, it tastes horrible, then an acidophilus so that my gut can get some healthy stuff in there if that is even possible. Then comes Duphalac in some juice, it feels funny in my mouth and down my throat to drink and tastes bad but is better with the juice, I have to force myself to get this down without gagging. Then a Vitamin C chewable, it is raspberry flavour because I can’t have anything with orange or citrus in it, the tablet tastes strong, too strong for me, I chew it and swallow it as fast as I can, have a sip of drink then eat two lollies to get the taste out of my mouth.

I get up to get ready to walk Dreamer, I don’t really want to, it is early and I want to stay in bed and sleep, but I know Dreamer needs a walk, after a week of rain and being stuck inside. My head hurts and I am tired. I try and go to the toilet, I feel like I need to pee but I can’t get anything out, this is the usual thing, I always have trouble urinating or I can’t hold it at all, it is frustrating. Nate gives me my clothes to get dressed. I was barely able to get dressed, by now I feel exhausted just from getting dressed. Dreamer notices this and starts his whining which he does every time I get dressed or look like I am going out, I haven’t had the energy to train him out of this yet, I know I have to and soon. The noise is so loud I can’t think, it vibrates through my head making my headache worse, I can’t cope. I keep correcting him but it only makes him whine louder. I have to remember to put him in his crate next time but I never remember to do so because I can’t think and my memory isn’t all that good lately.

I get his cool coat ready as I know it is hot outside, he whines louder anytime he can’t see what I am doing, I do my best not to snap at him, I have to remember to be positive training him. I need to get up earlier but 8am is all I could manage today, maybe in a few days I can get it down to 5:30am like we need to for the heat as none of us cope in the heat. I get Dreamer ready in his harness and head halter to go to the car, it is a struggle to do this even though Dreamer helps with most of it, my body is aching. I go to open my sliding bedroom door and it is stuck, I call Nathan and he tries to fix it but he can’t, we decide to leave it till we get home.

Nate takes everything to the car, then comes and gets me and dreamer. I have to keep stopping Dreamer from pulling and getting in front of the wheelchair, it’s been a week and he has forgotten most of his training, a week is too long. I get Dreamer into the car, it hurts to put the seatbelt on for his harness. I get into my seat in the car, I have to transfer from the wheelchair to the seat, this is difficult to do, and extremely painful, but I have to do it. I take a minute to brace myself for the transfer. I slide over, my leg feels funny, I sort of fall into the car chair. I have no balance and no real sense of space. I don’t have proper things to transfer from chair to car, chair to bed etc. Dreamer is whining because the car isn’t moving. Nate is still getting my wheelchair in the car and closing up the house. I sit waiting wincing at the pain of Dreamer’s high pitched whines.

Nate gets in the car and turns it on, the windows are down, they are normally up and we use the air conditioning because I can’t handle the sounds and smells of outside, but when Dreamer is in the care I try and have the windows down so he can smell things outside. Today the drive wasn’t too noisy or smelly, that was good.

We got to the park and I was glad there weren’t any people there it means the walk would be easier, only it wasn’t. Dreamer mustn’t have been feeling well either because he just couldn’t pay attention to me today. Nate got out of the car, and got my wheelchair, I got in to the wheelchair, getting from the car to the wheelchair is harder than getting from the wheelchair to the car, the wheelchair is higher, which means I have to lift or stand in some way to get into the chair, I sort of stood up, my left leg collapsed and I had to grab onto the chair with my left arm, my good but not so good arm. I hurt my shoulder, again. I go around to Dreamer in the car, I have to have the leg rests off to get Dreamer in and out of the car, this hurts, I have to either support my legs by crossing them over, my right leg, the good leg holding them up, or let them drag on the ground, which isn’t much fun.

So I go to get Dreamer out of the car, in case you are wondering why I do everything with Dreamer instead of Nate helping, it is because Dreamer is my dog, in training to be my Assistance Dog and needs to see me as his leader first, so I do most of what is needed to be done with Dreamer while we are out. Nate helps as much as he can. As soon as Nate opened the door Dreamer tried to get out of the car, this isn’t good and something he has done as a puppy, I had given him the stay hand signal before opening the door, but he wasn’t listening today. Last time he jumped out of the car before I was ready he got stuck, he is harnessed to the seatbelt, he hurt himself and needed his back fixed. Lucky he only went a little bit forward today and not right out of the car, I told him to back up so I could put his lead on and detach the harness. I tell him to stay in the drop position (lying down) so that I can get his harness off; if he stands I cannot do this successfully. I unclip him from the seatbelt and he stands, that pushes me up because I am over him and causes me pain, I have to readjust myself into my chair and tell him to drop and stay again. When I say that I tell him, I mean I use hand signals to tell him his commands, well known commands that I have taught and reinforced since I got him as a puppy. I know something is up as he isn’t as attentive to me as he usually is. I finally get him all sorted have my chair moved back and tell him to come out of the car, he tries to bolt straight to the car, not behaviour I want happening, I correct him and bring him back next to my chair so that Nate can finish putting my leg rests on and close up the car.

It is hot out. Nate pushes me in the chair while I treat Dreamer for paying attention to me or staying next to the chair, Dreamer keeps trying to cross in front of the chair, something we don’t want because he could get hurt doing that or I could get hurt with him doing that. I keep having to correct his position. We walk around the park a little bit in the shady places but Dreamer just isn’t paying attention to keeping the leash loose or not going in front of the chair, it is hot and I am grumpy. After a short walk I decide it is better if we go home with the way Dreamer is behaving which is unusual for him.

We go back to the car and the process of getting Dreamer back in the car and harnessed in, I have to put his car harness back on while he is in the car seat, which is easier for me but hard at the same time, this causes me more pain and makes me more exhausted. I get dreamer to lie down so I can put the seatbelt on, I feel his paw and get a bindii stuck in my finger that was in his paw, I wonder if this is why he wasn’t himself today. He seems a lot calmer after that. Then I have to get back in the car myself. It is really hot by now. Nate gets everything in the car and turns the air conditioning on; it is too hot for the windows down now. I feel really sick, hot and tired. Nate gives me some water to drink, I can only drink water when it is ice cold or I feel sick, but even drinking the water today I didn’t feel too good and could only drink a little bit of it.

We get home and I have once again go through the painful process of getting into the wheelchair from the car. I get out and get Dreamer out of the car, now he is paying attention and doing what I want him to do. While Waiting for Nate to push me up the ramp I get dreamer to go up and down the front steps, I think he found it fun to do. Nate pushes me up the ramp while I treat Dreamer for heeling next to the chair. Nate opens the front door and I tell dreamer to go inside in front of me, Dreamer doesn’t like this, it is different, normally he goes behind the wheelchair so I have to get up some energy to be exciting and happy to get him to go in in front of the chair. He finally does and I treat him. I get inside and get the leash off Dreamer and get myself undressed. I hate being in clothes, I find them restricting and irritating.

I take Dreamer out back to be toileted while the back neighbour’s dog barks at Dreamer being in his own yard going to the toilet, they are high pitched and I hate high pitched sounds. I try and contain myself and not scream. I have had enough.

I bring Dreamer inside, and he lays down, I get in bed, I want to go back to sleep but I know I can’t and if I did I wouldn’t sleep tonight. My body is aching, my legs are cramping, my back is spasming, I feel sick and Dreamer smells funny. I go on my computer and play Facebook games –I only play two mainly, Ravenwood fair and Ravenskye city, because I feel to sick and exhausted to do anything else. Nate brings me a Sustagen shake so I have a meal. That is my meal. I drink it even though I don’t feel hungry at all. After I drink it I feel nauseous. I keep trying to distract myself with fb and I start writing this. While I am writing, Nate brings me another antibiotic to take, he bathes Dreamer, weeds the lawn and does other things around the house and I feel useless because all I can do is lay in bed and try not to feel sick. I finally go to the toilet and wee at 3pm, I hadn’t gone since the middle of the night, which is 15 hours without urinating. I get the hiccups again, this time they go away on their own after a little bit but I still have the pain from them in my ribs.

Later on we will watch TV series we got on DVD’s or movies to calm down, I will try and have some small treats and likely I will still feel sick, my tummy will go hard and be bloated because I couldn’t go to the toilet today #2’s today and it won’t cope with the food I have. I will feel sick, we will go to bed early and likely the whole process will start again, and today was a good day. During which I likely had multiple seizures that I don’t remember, especially during the night, which I was probably told things that I won’t remember for days, maybe weeks and I didn’t get to train Dreamer like I want to every day, I will have gas that I cannot pass, I will have stomach cramps and pain. I am frustrated, depressed and angry at how things are but I push on and try and get through each day, each hour, each minute. I didn’t vomit, I wasn’t diarrhoea, I was lucky, it was a good Day, it could have been so much worse, this is my life. A good day.

Titan.

Photos Catch Up - September - Mostly Dreamer

2011-11-11T14:50:00.000+11:00

1/09/2011 Dreamer looking at me in bed

2/09/2011 Dreamer Snuggling under his blanket

Dreamer Snuggling under his blanket looking at me

Dreamer Impersonating a cat

3/09/2011 Dreamer sleeping on the chair like a cat again

4/09/2011 Dreamer sleeping on the chair

5/09/2011
Dreamer at the off leash park

Dreamer running back to me

Dreamer Thirsty

Weed Flowers

Dreamer in the car

Dreamer looking at me in the car

Dreamer waiting to get out of the car

6/09/2011 Dreamer On a walk with me, always proud

8/09/2011 Power inverter so I can charge Evie (Dynavox Vmax) in the car
Power inverter Box

Power inverter Box Side

Power inverter plug side

Power inverter back

12/09/2011 Cloud in the sky

13/09/2011
Rice Cooker

Remote

craft cords

Dreamer trying to sneak into the kitchen

15/09/2011 Dreamer on his trampoline

17/09/2011 Dreamer licking out a fruche container

20/09/2011 How bad my back looks

22/09/2011 Dreamer's Dinner

23/09/2011
Dreamer playing outside

Dreamer chewing a bottle

24/09/2011 Nates wound dressings from mole cut out

25/09/2011 Dreamer snuggled on his trampoline

27/09/2011
Outback Pampering Soaps

Dreamer getting my attention at the computer

28/09/2011 Above my bed

29/09/2011
Cool it bandanna which despite measuring correctly doesn't fit Dreamer when it is wet and expanded.

Clik Stick and clickers

Dreamer with the bandanna on dry barely fitting him wanting it taken off

Dreamer with the bandanna on dry barely fitting him

Dreamer in his winter coat

30/09/2011 Dreamer looking at me while watching movies

Photos Catch Up - August

2011-11-07T16:11:00.000+11:00

Monday 8/08/2011
Moshi Monsters Mash Up Trading Cards

Tuesday 9/08/2011 New Room after moving

Wednesday 10/08/2011 Dreamer

Friday 19/08/2011
snacks and sweets

Red Riding Hood

Runts in Bag

Jelly Beans in Bag

The Mechanic

Dreamer

Saturday 20/08/2011
Unknown

Little Miss Sunshine

27 Dresses

House Season 6

Sunday 21/08/2011
Mini Lalaloopsy Treehouse

Moshi Monsters Talking Katsuna

Barbie Pink Label Twilight Saga Eclipse Victoria

Moshi Monsters Moshlings Limited Edition Gold Collection

Moshi Monsters Trading Card Game Tin

Barbie Pink Label Pirates of The Caribbean On Stranger Tides Jack Sparrow

Mini Lalaloopsy Spinning Ferris Wheel

Moxie Teenz Melrose

Barbie Pink Label Twilight Saga Eclipse Jane

Mini Lalaloopsy Dot Starlight

Mini Lalaloopsy Spot Splatter Splash

Moxie Teenz Tristen

Moxie Teenz Arizona

back of doll head, hate how they do this with the heads

Sunday 28/08/2011
Hello Kitty bandaid on cut finger

Tuesday 30/08/2011
Dreamer

Wednesday 31/08/2011 Dreamer

Photos Catch Up - June, July and and a Video

2011-10-31T15:35:00.000+11:00

1st June 2011 Nylabone

Dreamer Chewing his Nylabone

22/07/2011

Veronica Mars

Disability Parking Sign

Light

knitting

Moshlings

Laloopsy Owl

Bea Spells a Lot Lalaloopsy

Pillow Featherbed Mini Lalaloopsy

25/07/2011 Tawny Frogmouth on Clothesline

Photos Catch Up - May

2011-10-27T11:06:00.000+11:00

10/05/2011 Lava Lamp

12/05/2011
Fallen and Torment Books

Ty Punky Plushie

Photo Albums

16/05/2011 Lava Lamp

20/05/2011 Tango on Trial

21/05/2011 The 39 Clues, Vespers Rising Book

23/05/2011 McDonald's
Cookies

Drink

Chocolate Sundae

Cookies Box Back

Me in my protective Epilepsy/Self Harm Helmet given from a friend

Dreamer in Coat

Dreamer with Bone - Nate's Hand

29/05/2011 Sausages, Tomatoes and Onion before being cooked

Photos Catch Up - April and some Videos too

2011-10-25T15:13:00.001+11:00

Vets Front Door 1/04/2011

1/04/2011 Dreamer At the vets a few days after having had 3 surgeries for a urinary blockage due to Urate bladder stones, common problem in Dalmatians.

Dreamer at Home from the Vets 2/04/2011

2/04/2011 Dreamer At the home a week after having had 3 surgeries for a urinary blockage due to Urate bladder stones, common problem in Dalmatians.

Dreamer's stuff at Home from the Vets 2/04/2011

Dreamer at Home from the Vets 2/04/2011

Parking Lot 11/04/2011

House S4 11/04/2011

iTunes gift card 11/04/2011

Toy Story Shopping Bag 11/04/201

Sunset in the backyard 21/04/2011

My Thoughts on the 60 minutes show, Apps for Autism

2011-10-24T18:32:00.000+11:00

On 60 Minutes: Apps for Autism: Communicating on the iPad

http://www.cbsnews.com/8301-18560_162-20124225/apps-for-autism-communicating-on-the-ipad/?tag=contentMain%3BcbsCarousel

I have problems in watching this show, it really bothered me and I don't know that I can express fully or properly why. My thoughts are all muddled up, maybe you will understand what I am saying, maybe you wont, these are just how I feel and think about it and nobody else.
The iPad is great for a lot of things, and has helped many communicate, I acknowledge that, people that may never have been given a device have a more equal means of possibly getting one with the iPad, but the problem is, the iPad is not the solution for everyone and these articles and shows seem to project that this is the solution for everyone with Autism and there is the problem.
I have an iPad myself and it helps me with a lot of things, and it has been a great tool for me for a lot of things that would never have happened without it, but I don't use it to communicate, it is not suitable as a communication tool for me.
What bothers me though is with these people, why had they not tried any other communication devices with them before the iPad? Why did the boy only have a laminated alphabet thing when he could clearly communicate and a communication device would have helped him? Why did none of these kids have any attempts at teaching communication with speech devices?

I personally know the frustration in not being able to communicate, only through Nate and him getting me a computer and advocating to get me a communication device did I get communication and have people listen to me. I use a Dynavox Vmax, it is better for me for communication but it is not the solution to everything or everyone just like the iPad won't be the solution for everything or everyone. The iPad isn't suitable for everyone, everyone is an individual and will have different needs, some need certain pictures, symbols, switch access or joystick or other adaptions to make a device work for them, the iPad isn't universally accessible for everyone. There are other options out there that are more suitable for some people and can be used, but why doesn't it happen? Usually because of money, but I have over time found out that most people don't even know AAC devices even exist, been told that people who work with special needs only ever seen them use PECS or communication boards and often those people are and will be frustrated, I am sure that most of these people would have benefited greatly from having a communication device like I have benefited from having mine. I think people expect that you get an iPad and awesome the person will speak, what isn't shown in a lot of these things is that people don't just suddenly communicate with a device, if they have some experience with communicating then maybe but almost all devices have to be taught in how to use them and where vocabulary is, I am still trying to learn where things are on my device.
I use my iPad to learn, to draw, to have sensory feedback in situations where I may meltdown, to help calm me, to give me tools to cope in a world of overload. But communication, I cannot understand the stick figure symbols, it doesn't have suitable switch access to a suitable communication app that I would use with the standards I have in a communication device. Sure there are now switches that can be used with the iPad and there are some communication apps that incorporate switches but none of them meet my specific individuals needs as an AAC user and that is the problem, we have to view each individual as a seperate individual with their own specific needs as a user and fully assess what is the most suitable device for them and not lump the iPad as the solution for everyone on the Autism spectrum and that is where I have a problem.
I have no idea if any of this made sense, this is just my feelings and expression as best as I could. Thanks for listening.

Photos Catch Up - March Part 3

2011-10-24T11:50:00.000+11:00

Scenery 23/03/2011

Sun 23/03/2011

Bird 23/03/2011

Notebooks 23/03/2011

Schedule on Proloquo2Go on iPad 23/03/2011

Clock 24/03/2011

Blood Test 25/03/2011

Dreamer in Car going to Vets 28/03/2011

Vets Sign 28/03/2011

Moth or Butterfly? 28/03/2011

Goodies from Outback Pampering 28/03/2011

Ghost Whisperer 29/03/2011

Sky 30/03/2011

Rain on Car window 30/03/2011

Things from Officeworks 30/03/2011

Photos Catch Up - March Part 2

2011-10-23T17:30:00.000+11:00

Toy Story Book on iPad 16/03/2011

Pocket Pond HD on iPad 17/03/2011

Fluidity HD on iPad 17/03/2011

Books 18/03/2011

Notebooks 18/03/2011

Touchy Books- Moon Secrets? Can't remember on iPad 20/03/2011

Motorway Early Morning 22/03/2011

Motorway 22/03/2011

Motorway Bridge 22/03/2011

Rose 22/03/2011

Bookmark 22/03/2011

Hearing

2011-10-22T13:27:00.000+11:00

I have trouble hearing things, every time I have had a hearing test it shows that I can't hear certain tones which is some of the tones used in speech, so I only get part of words that are spoken. I also have severe tinnitus, the buzzing, ringing in my head can be louder than someone speaking that sometimes I might as not hear at all, though sometimes it's other things I am hearing sounds I have heard in the past, music, talking different things, so much misunderstood about Tinnitus and how badly it can't affect people. Add to that constant ear infections all my life and auditory processing issues and it's a mix that makes it almost impossible for me to focus on anyone talking even in a quiet room, but life isn't quiet, there is always some background noise going on,too much noise for me, some noises are too loud for me and I cannot stand them, they hurt my ears, it may sound strange but that is how it is, I am deaf to certain tones, and other tones I am overturned into making things unbearable most of the time.
I don't understand a lot of speech as it is, I need things told to me in simple terms or I get lost in what the message is supposed to be and don't understand at all. I have to be facing someone to hear them, when I see someone's lips move I am more likely to get what the message is, but this isn't perfect either, a lot of words look the same when lip reading so the message can seem strange to me. I rely on visual cues, routines and picture cards to really understand, unfortunately the whole world doesn't communicate in this way and it makes things really difficult for me.
I always tell Nate if I can't see his face I can't hear him, I need to see to hear, he forgets often. I often know he is saying something but I don't know what, so it's a constant series of Nate saying something and me responding with "What did you say" it gets repetitive and I struggle because I don't understand why he doesn't remember to face me to speak, it sounds like a mumble, sometimes it's so repetitive that he says it doesn't matter, or don't worry about it or it wasn't important, or it's not important and I don't understand.
If it didn't matter or wasn't important why would he be saying anything at all? And I can't not worry about it, I always worry about it because it's a constant daily struggle to understand what is going on around me and I can't understand or hear what is happening and I worry that what was said was actually important but I have said " What did you say" so many times that things are not repeated for me because people don't like to repeat themselves many times over and I need repetition all the time. I wish I could hear and understand the first time.
Another thing I am constantly saying is that I don't understand, because things are said too complex or too long and not short and simple that I miss the message altogether and this clashes with Nate a lot and I get upset, Nate can't speak short and simple, his answers always have to be long and detailed, that is who he is and I would never want anyone to change who they are it just leaves me unable to understand him, I wonder how frustrating it must be for him having to have to try and simplify what he is saying or say it another way when his brain doesn't work that way.
I wish I could hear properly but I can't and I have found that people don't understand this, they think because I can hear something I am fine. I Was on a bus once a long time ago with Nate and there where teenagers on the bus making these high-pitched sounds and I was rocking and close to a meltdown because I cannot stand high pitched sounds, they make me want to rip my ears out, and they were saying why should we stop she's not deaf? They just didn't understand, you don't have to be deaf to have issues with what is happening. I might as well be deaf because I don't hear what is important anyway, just a lot of noise that doesn't make any real sense to me anyway.
I hate not being able to understand, I hate having to say what did you say so many times in a day that I am a broken record, I hate not being able to understand and having to constantly ask what everything means and that is only a minute part of what I struggle with daily, it's frustrating and makes me sad.

Photos Catch Up - March

2011-10-21T16:04:00.000+11:00

Stopped Taking photos everyday but take a lot some days to make up for it, could have took a lot more but a lot has been going on, think I will start with my daily pics and posts again now.

15/3/2011

Taking Photo With Evie

Hospital

House DVD

iPad Case

Bridge

McDonald's

iPad

Gastroparesis

2011-10-09T21:22:00.000+11:00

Today is Sunday

The date is 9/10/2011

The weather is raining

Today I am feeling nauseous

My behaviour was boring

Today we stayed home

I hate being sick

I love Dreamer being funny

I am thankful for Nate and Dreamer.

I want to talk about having gastroparesis (GP) and Chronic Intestinal Pseudo-Obstruction (CIP).

http://www.g-pact.org/index.html

Having GP and CIP means that I can't eat food like other persons. When I eat I get very sick, nauseous and in pain.

My stomach gets very big (bloated).

I am in pain for a long time.

Because I can't eat I have to have medication and my food is a drink called sustagen.

I have this twice a day, I should have more but I can't drink more than that.

It makes me very full and I still feel sick when
I have it.

It don't taste too good but it's not too terrible to have.

My medicine I have is Motilium is supposed to help me to go to the toilet easier, I don't think it works very good.

I also have to have Duphalac everyday, it doesn't always work well either, but sometimes I get bad diarrhoea too which can sometimes be all day.

If I eat I get very nauseous and bad cramping and the food gets stuck inside my throat or makes my tummy really hard, it either makes me very constipated or I get diarrhea so my body can get rid of it.

Having GP and CIP I don't normally feel hungry and the thought of eating makes me feel sick but also sometimes I get very hungry and full at the same time, it is hard to describe.

I get very frustrated having this because I miss eating.

I used to love food and now I can't have it.

I also miss being able to eat with Nate and go out and do things we used to like have a barbecue or go to a nice restaurant together.

I feel like a lot of what connected us together is taken away because of GP and CIP and that is sad and frustrating.

Sometimes I get very mad at having this and sometimes I cry in bed alone because of it.

Sometimes I eat things anyway because I don't want to miss out but it becomes dangerous because I can choke, get food stuck in my oesophagus or I will vomit or be badly constipated or diarrhoea.

Even having drinks can make me choke, I have to have my drink thick like thickshakes or I choke on the drink, this is dangerous because it can go into my lungs.

I get scared sometimes that I won't be able to drink anymore.

My GP and CIP isn't as severe as some peoples but it is still very scary for me and I hate having it.

I hope that one day there is more understanding and a cure, most doctors I have seen don't understand what it is or how it affects me which is very frustrating.

I hope more people learn and become aware about this and know sometimes when a person says they can't eat it means they can't eat.

One of the biggest problems I have had is people offering me food and being told I can't eat and being treated like we are being rude when I literally cannot eat what is being offered.

Thanks for reading.

Written by Titan with some help from Nate using Evie (Dynavox Vmax)

Jealous

2011-09-29T18:22:00.001+10:00

No offense intended to anyone in this post, these are just my feelings.

I am jealous, one of my faults, one of the things that makes me human. I hold no grudge against anyone and despite my jealously I wouldn't treat anyone differently, I try to give everyone the respect they deserve as I would hope would be given to me, but at the end of the day I am jealous.
I am jealous of those who have a family, those who have a loving mother, a loving father, siblings, family they can love and turn to to help them even if it's just for them to say I'm here I hear you, because I have never had any of that, I dream of having a family, I dream of having a mother but I know no matter how much I wish it it may never be true.
I am jealous of those with friends, people they can talk to and trust and tell their secrets too, people they can visit or who will visit them, no matter the distance or cost, people who want to be there for their friend and not have any ulterior motive behind it other than being friends.
I'm jealous of friends so close that even though they aren't blood relatives they call each other brothers or sisters or whatever family name that suits them for I fear that will never be something I will have.
I am jealous because I feel so alone, so isolated, because I never really know anyone cares, I'm jealous because I want real friendship, close friendship, real life friendship, people I can see and touch and interact with in real life, not to be so isolated and alone, I am jealous of those that have all the equipment they need to live a functional life, to be able to do all the activities and sports and recreational pursuits they desire, I am jealous of those who can hold a job because I never will, i will never earn money or afford the things i need or want. I am jealous of those who don't have to starve or go without things for months, years on end just to be able to afford one piece of furniture, medical equipment or other need. I am jealous of so much and I hate that I feel this way about people I care. About, people I love and only wish the best for I hate this part of me but it is a part of me and I have to live with it, the feelings, the hurt, the depression that all comes with it. I'm jealous.

I don't know why I get this feeling people don't like my photos or my art, I think it's because I'm not social. I don't add people to my Facebook account and am very selective with my friends on there. I don't like to advertise myself and I think my art and things doesn't really get any attention. I posted an artwork on my Facebook and i felt like hardly anyone cared about it or liked it but when it's on Nate's Facebook heaps of people like and comment on it, because he has a lot of Facebook friends and there are more people, it just feels so depressing that just because of the way I am because of my disabilities disadvantages me from things, sometimes I wonder if I should even post anything on Facebook or anything at all because I don't feel like anyone really cares what I do.

I don't only get this way when I post on my Facebook, I don't feel like I have real friends, just people on my Facebook, no one that really wants to talk to me or know me outside Facebook, that's not saying the people on Facebook aren't my friends they are but I need a connection that is in real life and more tangible than an Internet interaction, I don't even have friends that email me or interact with me outside of Facebook, twitter or my blog, it feels sometimes too superficial. Seeing how other people are how they have friendships and their own little groups and things and all I have is Nate and Dreamer and people say that is enough but if it was them how would it be enough? I feel like I'm just watching the world, not really in it, a part of it, included, just watching and waiting for friends, for people to care for things about me, I try and distract myself doing things but it doesn't help I'm still at the end of the day alone without any real live friendship and I'm jealous really jealous of everybody, like K and C and how they are friends and visit each other etc and I don't have that with anyone, and J who has all his friends and sure he visits once a year or so but I need a friend or friends who want to be in my life more than that not just once every now and then or only through the distance of Facebook and it's games and no one seems to understand that, I feel so isolated and alone. I think this is why I want a wheelchair and other equipment so badly, so I can go out and do things, and hopefully make real friends but money is in the way of everything. It's so frustrating and depressing. I hate being this way.

Wednesday 28/9/2011

2011-09-28T20:32:00.000+10:00

Today is Wednesday
The date is 28/9/2011
The weather is raining.
Today I am feeling depressed.
For dinner I had slow cooker meal.
I stayed home.
Nate visit friends.
I hate being alone.
I love having Dreamer.
I am thankful for having Nate look after me.

Written by Titan using Evie (Dynavox Vmax)

Friday September 23rd 2011

2011-09-23T21:55:00.002+10:00

Ordered some stuff to train Dreamer with, not sure how long be till they arrive, maybe Tuesday. Joined a dog trick training website, think it will help me with training Dreamer to do tasks for me and give me some motivation to train and have fun with him. Have been looking at wheelchairs and hand cycles and tricycles, found a hand cycle that I would like to go biking with Dreamer and do the Endurance Trial with him. Some wheelchairs that I think I could do stuff with Dreamer it's just getting the money. At the moment we are working towards a van so I can have a proper wheelchair. Been a bit sick lately, not doing much. Think I might start a training Blog for Dreamer, somewhere to put my thoughts and progress with how we are going in training, not sure yet.
Allergies seem to be flaring up because of spring, don't like the heat much, always dread summer coming.

Childhood Toys

2011-09-20T23:08:00.001+10:00

When I was a child I wasn't allowed to play with toys. I had a few toys but because I didnt play as my mother expected me to play they would be taken away from me. What they couldnt understand is that just because I didn't play like other children didn't mean I wasn't playing in my own way.
There was this Barbie doll, I don't know why this toy bothered me more than the others, there where other toys I wanted to play with too but this barbie doll I never got over. I don't remember how or who gave it to me, it may have been a Christmas present but I never was allowed to play with her, I never even got to touch her. She sat on a shelf on display up high out of my reach. I could see her every day but I couldn't touch or play with her. It was some kind of torture I could never understand. I don't know what happened to her, I think we moved and a bag of toys fell out of the car but my mother refused to go back for them, I think she was probably lost in that bag. It is something I will never forget. She was the first thing I'd see when I woke up, I wanted so badly to have her, play with her it always left a deep ache in my heart. Even today I have trouble with Toys. I love having toys but I still have that fear to play with them, I'm afraid that they'll be taken, afraid that my way of playing and having my toys won't be understood and that it will be thought that because I play differently that my toys will be taken. I know that would never happen with Nate, but the fear is ingrained so deeply from not being able to play with any toys as a child.

The things people say

2011-09-19T11:16:00.000+10:00

I know I shouldn't let it bother me but I often can't help my reaction to what people do or say. I've heard some things said online that have bothered me lately, and then there are things from the past that people just can't seem to understand. It is frustrating and hard for me to deal with. Repetition gets tiring.
There are the people that say I am high functioning, or that I'm not like their child so I must be high functioning etc. There was a comment read that said their child is on one end of the spectrum and anyone who blogs is on the other, I can't agree with that because autism is a "spectrum" and some who blog may be anywhere along that line. People assume I blog and write and I interact online all on my own, I don't. In fact if I wasn't cared for full time I wouldn't be online at all, I wouldn't be able to do any of the things I do, I don't do all this on my own, and I find interaction stressful. If this means that it's going to be assumed I am high functioning then that's your issue. Consider this though, I am on a disability pension, I am on it because of my autism and that alone. I cannot care for myself at all, I am not supposed to be left alone for any period of time. I wear a helmet full time, partially because of my seizures, but mostly because of self harm, I will bang my head, hit myself, bite, scratch and more. I'm not safe on my own. I may be considered violent by some, but I wouldn't knowingly or intentionally hurt anyone. I only lash out if I feel directly threatened, someone in my personal space, being touched without given reason or told that I will. I will break and throw things, I have trouble seeing beyond the moment I am in. I have to be prepared for any outing with a schedule and picture cards, social stories that tell me what is happening, when things don't go as I've been shown I get very upset. I cannot cope without a daily visual schedule. I cannot take medication, clean myself, dress myself, shower, do anything without support and help, I have to wear nappies (diapers) and this has nothing to do with my physical disabilities, I was like this before the neurological issues took effect on my body. I cannot understand people and what they say, words are foreign to me, without pictures or being shown visually what is being said I wont understand. I often pretend to understand, this gets me mistaken for being at a higher functioning level than I really am because I don't want to get teased or bullied. I cannot control my emotions at all and this is often mistaken for aggression, I cope in my own ways, I rock to calm myself, I flap when happy or excited, I like to watch things repeatedly, I will organise things, line them up, put order into a world I cannot understand.
I cannot speak, I use a device to speak write and read. I cannot cope with too much at once, more than one sound at a time, the world tome is too loud, too bright, too distracting. I get lost easily, if I am really upset I will wander off and will get lost, my care is very demanding, if I'm not watched all the time I can be in danger, I am not aware of the world around me most the time, I can't differentiate myself from others, I often cannot understand that others don't think or feel what I am feeling. But I can communicate with a device and I do it well, and this makes me high functioning, one thing that I do well. I can be creative, I can understand animals better than anything else, I have a lot of good qualities within me, but I will never hold a job, be able to live alone, care for myself, survive without full time care and support, if this makes me high functioning then so be it. I'm tired of being judged, I am as I am and that is it, I am on a spectrum, I have my own abilities there is much I cannot or will never do, there is few things I can do or am good at, and for me that is enough. Often I wish I wasn't given a way to interact with the world, often I wish I wasn't able to understand what I do, because so much of it is confusing or doesn't make sense and I was happier when I didn't know, but I do know now, and this is my voice, and I use it as I can. I don't like to be judged, but everyday I am judged in one way or another, I just want to be me, just me, not any of those labels that society seems to require, Autism is part of my identity but I am me in my own right too. Often my communication seems as is said eloquent or smart, yet I cannot understand my own words once I write them, they don't make sense to me, I could read this in my way with my device and I will not understand it at all, that to me isn't being functioning, I don't see myself as functioning, on a basic level I function but high functioning, I fail to see it. I am sure eve this post will be misunderstood, that is what I have learnt humans do, judge, misunderstand, make assumptions and then label into their own categories of what should and shouldn't be and I get placed into a world where I don't fit. It frustrates me. Im tired. Everyday I fight, just to get through each day, and every day my struggle is seen as lesser than something, it's tiring, I just want to live without being judged or assumed as to what I can and can't do, it's hard enough to live already without the extra pressure and expectations of me to do things I am not capable of, I will just shutdown again, is my voice not also worthy of being heard?

Finished Unpacking

2011-08-19T21:55:00.000+10:00

We finished unpacking on Thursday and have been trying to relax since. Nate is in a lot of pain from the move, I'm worried he damaged his hand or wrist, hopefully rest heals it in time. I finally got back onto my computer yesterday but still trying to get a routine down. Everything is different and it is hard to get used to. Dreamer is learning a lot of things that I couldn't teach him at the old house. There isn't really a lot to write at the moment. Am just glad to finally be unpacked, now I am trying to get used to all the changes, but that will take some time, change for me is hard and stressful and I think many don't understand how hard a transition like this is for me, I don't think I have the words to explain it either. Sometimes things just can't be understood.

Tired

2011-08-15T20:52:00.000+10:00

I was too tired to write a post the last few days. We have almost finished unpacking, its exhausting and I am very fussy with my things and where they go. The plumber came and fixed the shower drain today, all sorts of stuff he had to get out. He couldn't fix the washing machine tap that was concreted over for no apparent reason at all, he has to order a whole new tap, he couldn't fix the kitchen sink either, needed to order a special part for that too so may be another day or two before it all gets fixed. The oven is working it just needs a major clean it is filthy. Nate. Finished moving all our stuff in yesterday and slept here for the first time last night, Dreamer kept getting up every ten minutes during the night to check he was still here. Nate went back to the old house today to pull the curtains down and see that everything is disconnected there but only the phone was so he may have to go back again. He spent half the day changing our addresses everywhere, having trouble with some places though. Today he got sent the new rental payment card, I have been asking DOH for years to put things into Nate's name and we were both shocked when the rental card came in his name, maybe they finally payed attention to my requests and his legal guardianship and Power of Attorney. I just can't deal with those financial things, Nate has always dealt with it anyway, maybe now they will stop calling and asking to speak to me when I don't even use the phone. I have had a horrible migraine for two days now, tried meds but they didn't help at all, I'm very irritated by it.
Yesterday someone came knocking for the people that lived here before to buy drugs, asked Nate for some smokes, but none of us smoke or do drugs, and wouldn't ever be selling any either. Today some people came around again, I could hear them on our verandah and was really scared, Nate was on his way home at the time, they talked to the neighbours and left before Nate got home. Nate is upset about it but not sure we can do much. It's pretty obvious with the signs on the door that the other people don't live here anymore. I hope we finish unpacking everything tomorrow so I can get back into a routine and on my computer and things. It's started to feel more like a home slowly. Not many boxes left now.

Thursday, 11th August. 9pm

2011-08-12T21:45:00.001+10:00

Today was a long day. I woke up early after not being able to sleep till 2am in the morning so I didn't get much sleep. Dreamer just kept whining and it woke me up. I wanted to sleep more but couldn't. We set up the table I will be using to sew on for now. We also set up my bedroom drawers/shelves unit, one cube bookcase, my computer table and the TV cabinet. It's staring to look like our home. Nate packed a lot of kitchen stuff away. the removalists rang to say they coming tomorrow after 12pm to move our fridge, washing machine and wardrobe. We had to go back and remove all the fridge stuff, we weren't expecting the movers so soon. We put all the fridge stuff in a bin with ice, Nate said it felt like we were at a party getting beer out of a bin, I thought that was funny. I tried toileting Dreamer with Nate's help. He doesn't understand the wheelchair and that he can't pull or just chase the cats. He is very reactive to everything, I hope I can train him out of it now I can do more with him. We are both in a lot of Pain from setting things up. We almost have all the big things here, then it will just be unpacking everything. Hope it doesn't take us much longer to move everything. The electricity at the old house will be cut on Monday, so hopefully we are done by then. Nate said the kitchen sink is leaking so he can't use it and the tap handle is really loose, I think if I used it it would come off because of how I have to hit the handle to turn it on and off and change it from hot to cold, more things to add to the list of things to be fixed, I also noticed one of the doors wont shut. We tried to put my lamp shades in my room but they have painted over the light fixture so it's stuck and we can't unscrew it, Nate said he will fix it when we finished moving. We brought all my dolls over but I don't want to get them out of their boxes until everything is done, I'd be too scared they'll be knocked over and break.
We need to get an OT report so they will put in sliding doors for me or if they can't lever handles on the doors, also to get the paths fixed so I can get to the backyard because it's really hard to do that at the moment and I think Nate hurt himself pushing me and to modify the light switches so I can use them, some of them I can't even reach. My wheelchair isn't doing too well, I think I need an electric one anyway but don't know when we will afford it, we are going to be saving for a van first.
We watched a bit of Up together but Nate had to drive back to the old house as it was getting really late. He has to stay there till all our stuff is here. I can't wait to have Nate sleeping here.
Most the neighbours seem nice here except for two, one is a house sort of behind us, They have kids and the kids are always screaming and crying, the man keeps shouting all the time and Nate says they are being teased and made to cry all the time, I think it might be some sort of abuse but I don't know, I hate seeing kids being hurt but I never know i can do anything, I think it's because of how I was hurt so much before I met Nate. At least they are quiet during the night, It's just at 7am all the noise starts, earlier than I usually wake with my seizures and things.
And the other is a house across the road from us, they have a lot of cats and they keep spraying on our stuff, it really stinks. I hate it when people aren't responsible with their pets and don't keep their pets properly. I think I will complain to the council about the cats but I don't think they will do much, they hardly did anything at the old house with the dogs. When I went out with Dreamer they where trying to get his attention and being very annoying with the Ooh look at the dog, look it's a Dalmatian, they even thought they could just come and pat him without asking when it was obvious he was being trained, and even if he wasn't it's rude to pat a dog without asking first. Good to train him for distractions but annoying all the same.
It's really stressful and tiring moving, think it will take us a week to recover once we are done. It's hard because we have to do it all ourselves as there aren't any close friends and we don't have any family.

Wednesday 10th August. 9pm

2011-08-11T21:00:00.000+10:00

Moving Day Two

Man came to set up Internet and phone, it took a really long time. We finally changed our Internet provider, we had a really bad one before. Our Internet is really fast now!
We set up my drawers, and TV in my bedroom. There is still a lot to do though. We have to wait to have the removalist to bring the fridge and washing machine over. My room is almost all set up. The oven isn't working, we will have to get housing to fix it. Have to be eating food we normally wouldn't eat and it has been making us both sick. Dreamer seems to be settling in, getting used to the noises, last night he barked at every little sound, he seems to have settled a bit today. He tries to help with everything, he makes me laugh.

Tuesday, 9th August. 9pm

2011-08-10T21:16:00.000+10:00

Moving Day
Today we got to start moving house. Nate signed the lease and we started moving. We moved my bed in first and set it up. It took a long time, then the bed wouldn't work properly. We kept having trouble with the raising of the bed, only the bottom end would raise not the top. Nate is going to ring the company about it so it can be fixed, we finally got it to work but had to fiddle with the cords a lot. Then we went and got Dreamer and his crate. The crate was really hard to set up, we all don't like it much and think it's too small for Dreamer. We want to get him a better one but don't know when we have the money. I am sleeping at the new house while Nate sleeps at the old house. I am a bit scared about it but I know I will be safe with Dreamer here. Tomorrow they come to set up the phone and Internet. We are both (me and Nate) in a lot of pain. It's so much work and stress moving, I can't wait till it is over! I had a shower in the new house, I can finally use the toilet and shower on my own! But the shower drain didn't work properly, the water was up to my ankles and I was sitting in my shower chair, so it would have been to my calves if I was standing! Nate says they will have to fix it. The tap handles in the bathroom are great, I can use them all by myself, it is such a small thing but makes such a huge difference for me. I can't wait to use the kitchen, its really roomy for me.

Catch Up

2011-07-23T14:46:00.000+10:00

Today is Saturday
The date is 23/7/2011
The weather is rainy
The temperature is 15degrees celcius
Today I am feeling nervous
it's been a long time I have wrote on here.
So much has been happening. I couldn't use my laptop and we didn't have internet. So I wasn't able to write or post anything online and then I was sick.
I have a new touch screen computer Nate bought for me. I really like it. We get the internet fixed, so can Blog now.
We get wheelchair house offered but don't know when we will be moving because they have to fix some things before we can move in. I won't be able to post much when we are moving and Nate gets everything set up. I am very stressed about moving and not knowing what is happening.
I have been playing Moshi Monsters and collecting Moshi cards. I also been obsessed with Lalaloopsy dolls. They my two obsessions right now, I really like them. Not been doing much else, because everything in boxes for moving. We hoping house is ready on Friday but we don't know. Department of Housing very hard to deal with.
That is all I can think now. Will try start uploading pics when I can, have lots months to catch up with photos.
By Titan Using Evie (Dynavox Vmax)

Communicating

2011-06-20T14:04:00.000+10:00

Sometimes I feel like I am arguing with Nate, he says we aren't arguing but I feel we are, maybe we have different ideas about what arguing means. I know that he is telling the truth that he isn't arguing I am sure for him it isn't but for me it feels like it. We tend to often misunderstand each other, I misunderstand a lot and sometimes we clash with things, I need simple answers I can understand, Nate can only give long detailed answers and I am having to sift through all the information to try to understand what the message is, and I almost always get it wrong. It makes things difficult for both of us. I also often try to communicate something to Nate and he has trouble processing it and I have to try and communicate it several different ways for him to understand my message. Sometimes its days before we understand each other, and often we are communicating the same thing to each other, but because we are saying it differently we don't understand we are saying the same thing. It makes things frustrating for me, I am not sure with Nate but I imagine he gets frustrated at trying to communicate with me. We both have communication difficulties and we both communicate in completely different ways. I am not sure if this is common for people with ASDs trying to communicate with each other, or if its an Aspergers versus Autism thing. I don't know if it would be the same problem with people who don't have an ASD as I haven't really had that much interaction with them. I just know that communication between us is one of the most difficult things, we work hard at it and eventually we work it out, but often there is a lot of emotions in between and sometimes I really hate that it is this way.

Haven't been on here for a while...

2011-06-16T10:58:00.000+10:00

A lot happening in my life emotionally, a lot of things that I would never put here.
I realised that part of my problems with friends is that I can't be myself around them and that makes me awkward and shy in social situations. I'm not talking about the Autism, that is a factor but I don't hold that back anymore even though I think that makes people scared of me sometimes. There are some things about me that I wouldn't trust revealing to anyone, things that very few could really understand, that people think it makes you crazy and you need psychiatric help, but if they aren't affecting you in a way that you can't live why would you need that kind of help? It's never worked for me anyway, I find psychiatry the least understanding thing of anything. There are a few people I want to reveal this part of me to, I have blogs and other accounts I started about them but I am really afraid that they may not want to know me anymore, that it might make them think I am crazy, trust isn't easy for me, but I think I trust these very few people, I'm just so so scared to open this up to them, but I will try, I think I'm ready to accept whatever happens from it. I hope they are open enough to see this part of me and accept it as it is, I also know that it may not be able to be accepted and that's ok, everyone has their limits.

Sent from my iPad

Communication

2011-06-04T13:28:00.000+10:00

I forgot about blogging, I got caught up in getting the most out of the Tango before it goes back.
At he moment I think it's not suitable as a back up device, but I think it could do well as an additional device to Evie. I don't think one device is always suitable for every situation and I think the Tango would be good for me at home in bed and places where having Evie isn't possible at the moment, but I don't think I can make a final decision until I have trialled the other devices I'm on the list for. Im looking forward to seeing the difference and comparing the devices, Evie will always be my main device but I need a backup system as well. I don't think many people understand this about AAC.
It feels to me like people think just giving one device to a person is the answer and wahlah they can communicate, but there is so much more involved than that. You need to find the most suitable device with the right features for the person, everyone is different. And then they need to be taught how to use it, they won't just know instantly, and then all the vocabulary needs to be learnt.
I am still learning Evie even now, I still have a lot to learn about how she works and how to get her to do what I want, it is a long process and not always easy, it is often frustrating.
But there always needs to be a backup in communication in case something happens to the device or it breaks down, there has to be back ups, and there are always more than one method of communication.
I don't just communicate with Evie, I have certain signs and sounds that mean certain things and there is also manual boards and books that I use. I also just can't use Evie everywhere, it is difficult to use Evie in bed, at the hospital, in the bathroom, in the car, I need something different for those situations.
I think there needs to be multiple methods of communication that all complement each other and back up systems too and I know that Nate understands this but it's so difficult to explain to other people.

Sent from my iPad

Dreams, Memories

2011-06-03T14:01:00.000+10:00

I dream about them and I don't want to remember, I don't want to relive those moments, to be out of control. I don't want to go through it again, I don't want to feel afraid, I don't want to feel I have to keep fighting. I want to be free of the past, to look forward to the future but no matter what I do, or how I try, there is always something that makes me remember, makes me dream of them, and I wonder, why can't I move past all this, why do these scenes repeat themselves to me. Every time I remember more and the more I remember the more it hurts when all I want is all this pain inside to go away, and I fear I am bringing him down with this darkness inside that I cannot control. This is not me, this is not who I want to be, the real me crying and screaming feeling trapped within the caged Walls of my mind. My memories are filled with pain, anger and torture and I don't want to hold onto that, not now, not anymore. I want to be free of all this. I wish I knew how.

Sent from my iPad

Out of Touch

2011-05-28T18:28:00.000+10:00

I'm feeling a bit out of touch with the world. It's nothing to do with anyone else it's just me, I stepped way from the Internet for a while and that meant that I stopped reading and commenting on blogs, twitter, FB statuses and so on Now I feel a bit behind and I'm not sure I can get back to where I was and I feel a bit lost. Online is the way I stay connected. So when I leave the Internet I feel alone again, like I'm not part of the world anymore. Sometimes that's ok, sometimes I want to go away and find myself sometimes it isn't, but always when I come back I feel like I've missed a big part of something and I don't know where or how to start again, how to get back that feeling that I'm a part of something.
Things are changing for me. My relationship with Nate is changing, we are going through a change and beginning a new journey together. I feel free that I'm not going to doctors anymore. Have decided to go off the testosterone for a while to see how I go. We don't know how it's affecting me medically but we also don't know how I will feel psychologically and I may want to go back on it but we will see how I go, it's more how other people treat me and see me than me being on treatment or surgery. If I'm treated like a boy it's fine, if I'm treated like I'm female it becomes upsetting for me because inside I'm a boy. I'm also getting back to my spirituality, I left that for a long time because of issues I had with my past and my mother. But I know I won't be like that and I have to get back to it, I miss it and it made me happy, it's a part of my soul I shouldn't ignore.
Hopefully I get back to things and feel connected again, but I'm going to take it slow, if I rush I'll feel too overwhelmed and that will make me want to disappear again, that's not good for me, I have to find my balance, and that is where I am at the moment.

Sent from my iPad

Things I look forward to Everyday.

2011-05-27T19:44:00.000+10:00

Everyday I look forward to a few things, they aren't much but they mean the world to me.
1. Seeing Dreamer's smile as I greet him
2. Movie time with Nate
3. Seeing Nate's photo on fb and the comments he gets
4. Seeing what shape the lava lamp has changed to being different everyday
5. Using my iPad
6. Having my communication device with me
7. The goodnights from being put to bed by Nate

Small simple things, but they keep me going most the time. It's the really small things I appreciate in life.

Sent from my iPad

Accepting That Which Cannot Be Changed

2011-05-25T18:23:00.000+10:00

Sometimes I have to accept that which I don't want to accept.
Sometimes I hate that I have to move on with things that I don't want to let go of.
Sometimes I wish things were the way they were before.
Yet even If I had one wish, my health wouldn't be in that actual wish., confusing but true.
I hate that:
-I will never dance ballet again, and I was really good at it and loved it.
-I will never ice skate again, which I was also good at.
-I may never have a day seizure free
-I may not be able to sew again
-I may no longer be able to do art with my hands again
-I have to relearn how to do things that were so easy before
-There will never be a day were my hands and body don't shake
-I will be in pain for the rest of my life because medicine can only do so much
-I will never breathe properly again
-one day my COPD will progress to emphysema and I think it is starting to
-I might not live longer than my dog
-I don't know what will happen to me physically or mentally
-I am already losing cognitive functions I relied on to make sense of things before
-I can't remember what I wrote, ever in my life, and I can't understand any of it when I read it.
-I may never see my children, I may never be able to cope with it.
-Doing the smallest of tasks is a big accomplishment and I think I'm the only one who celebrates when it happens
-I may never have a family
-I may never have someone to call a best friend
-I may be stared at for the rest of my life
-I have seizures in public and only remember the feeling before and the haze afterwards
-I will never get a diagnosis or medical help for my disabilities
We have to buy everything that I need ourselves
-I can't get an assistance dog because of my disabilities when I always believed they were supposed to help your disabilities
-My disabilities make me a lesser thing to most people, someone not worth fighting for or dealing with
-I will never have a job or be able to earn money for myself
-I cannot enter 99% of shops because they aren't accessible to my needs
-I can't access 99% of medical professionals because they are not accessible to my needs
-99% of people don't really seems to understand what something being disability accessible really means, only those that are disabled or care for them seem to actually get it.
-Everyday of my life I have to fight to live, fight to breathe, fight to be seen as a worthy person.
-I will always be bullied and abused in one way or another just because of my disabilities.
-I will always be looking over my shoulder, always being aware and in fear that my family may find me
-if my family were to find me I may have to disappear again and I don't want to
-I will never know what it means to not be afraid
-Medical equipment and communication devices are so overpriced and are unreachable for most with disabilities
-Most without a voice have no alternative communication or are not heard when they do
-Someone sometime will always laugh, stare or treat me like a child because of my disabilities or how I use an alternative method to speak
-coughing could break my ribs
-I get severe bronchitis once or twice a year
-the smallest thing can make me really sick
-I will always be tired
-I will always be on medication
-there's no way of knowing what damage medication is doing to me because I react to medication differently than others
-there is hardly anything I can do independently
-I could keep going with this list for a long time but am so tired I know I should stop now.

Sometimes I hate my disabilities, yet I still don't wish them away because they make me me and my wishes are much simpler and smaller than that. Because simple things in life matter to me more than being cured or getting better, but if it was possible I wouldn't say no to it either except for one thing because that I believe is an inherent part of me despite the difficulties I face.
Sometimes I hate letting go, but the only way for me to heal is to let go and move forward.

Rant

2011-05-24T13:31:00.000+10:00

1. I am NOT fat because I eat too much, that is rude to say and a stereotyped assumption. It really hurt my feelings. I don't eat chicken nuggets or junk food all the time, the rare occasion I might get McDonald's is a treat. I have disabilities and a Thyroid problem and in fact, I have lost weight not put it on. It is rude and insulting to insinuate I ate too much and put on weight. I have one sustagen shake a day and I'm lucky if I keep that down, anything else is rare and hard for me to eat, or keep down, I barely eat at all.

2. We don't "humanise" Dreamer, he NEEDS a jumper in winter because it is cold, our house is cold, it is a Fibro house which is freezing and doesn't protect us much from what the weather is outside, we even need to rug ourselves up like we are at the snow because the house is that cold during autumn and winter and most Dalmatians are cold in winter and need coats to keep, warm, just like if we had a greyhound, a horse, a Devon Rex, it would be the same. He was shivering without a coat NOT having us on, he was physically cold, we could feel how cold he was touching him.
We don't treat him like a human, he is treated like a dog. I like calling him My son and me his Daddy that doesn't mean I am humanising him, it is just what I like and how i see it. It doesn't matter what you call yourself or your dog, my relationship with my dog is going to be a different situation and bond to yours. Its my choice just as it is yours what to call my dog and myself in relationship to my dog. He is my dog and I'll call him what I like. He is trained well, he doesn't use the furniture or eat his dinner at the table with a knife and fork. He knows we are his leaders and he listens to us and knows if he has done something he shouldn't have.

2. Nate IS himself online, if you don't know us that well, we are both ourselves online, if you don't like how we are online, you are telling us you don't like a part of us, that is hurtful. It is who we are, neither of us are ourselves in public because it is difficult and stressful for us.

3. Nate does NOT like to use the phone, forcing him to because you like it better that way dismisses his disabilities, just like it would mine if I was asked to use a phone. If you really need to talk on the phone with Nate, you will HAVE to use the NRS service to speak with Nate.

4. I DO NOT want to keep seeing specialists, I have had enough of it, all I want now is to get the equipment I need and live my life as I want to. I can't have just any walker or any wheelchair, I need specific equipment to make me independent. I don't want a social worker or anything else medical or government wise, I just want to move on with my life whatever is left of it after years and years of going through the system and getting nowhere, Ive been through it all, both with and without money and gotten nowhere. I'm tired and want to be happy and seeking a diagnosis was not making me happy.

5. It is hard for Nate to go out, he has to be feeling well to go out, I don't reveal what his disability is but I know that it affects him more than he shows anyone, it is even harder for me to go out in the car and usually only for a planned or scheduled trip. We don't like not having things unplanned or just bumping into people unplanned, it isn't enjoyable for us like it may be for you.

6. I have only worn the helmet once yesterday, and again today, I don't know how I feel about it yet, its comfortable, I don't know what else I feel or think about it, I haven't got that far in to the process, it took me over a week to get used to it and put it on, new things are difficult for me and I need time to adjust to them. Sometimes a lot of time. Nate won't get back to anyone on things until he knows how I feel about them, and yes the helmet is supposed to fit over the eyebrows to protect the head.

7. It is Nate's choice to see a specialist or not, it is his choice to make if he thinks it is worth it or not, just as it is my choice to not receive any more medical care except for my pain management, my body, my life, my choice, my right.

9. Dog dancing is a sport that brings the bond between the dog and owner together, it isn't humanising the dog either.

10. I have put this publicly on my blog because I know it is not just one person who may think this way about us, and I know there is several people who think these kind of things about us. It is nothing personal against you or anyone else, it is just how I express myself. If you want to be in my life you will have to accept these things about me.

11. I have no intention of upsetting anyone, I just have my space and this is my space. This is how I deal with things and sort them out. I would never intentionally attack or harm anyone. These are just my feelings.

12. It takes just five minutes in the car for my pain to go from bearable to unbearable, being in the car for a long time puts the pain up to a level I don't want to be in, being in my wheelchair for any amount of time puts my pain into can no longer cope or think because all there is, is my pain, beyond a ten, it is not a suitable wheelchair and I cannot just get any wheelchair or walker, this is one thing I am tired of repeating to everyone over and over again.

Catching Up

2011-05-21T15:22:00.000+10:00

2 days ago was my Dreamers 2nd birthday. I still can't believe how fast it has gone, how much we have been through together, how beautiful he is.
I haven't been posting because a lot has been going on in my life and I was rather depressed but hopefully I can get back into it, not sure anyone missed my posts that much though. I am probably going to be all over the place with this post.

When I last updated Dreamer had come home from having an emergency with urine stones and was still healing. He has healed up nicely, and is doing well on his special diet he is on now. Test results showed he had ammonium urate stones which are the type some Dalmatians are prone to if they have too much purines (a type of protein) in their diet. We had been keeping Dreamer on a certain diet before to avoid that but it obviously didn't work. He is doing very well now, back to his happy old self full of life and energy.

With me, decided I don't want to keep seeing these specialists and doctors anymore, they werent helping, or listening to me or doing what was best for me. Am being weaned off the Keppra slowly because the side effects were worse than the seizures I was having and Im not sure I want to try another medication after all the ones I had throughout my childhood and not getting any relief. I told Nate I just want my pain managed and to deal with whatever else we can ourselves in our own way and me be happy instead of me having to be a zombie or constantly depressed because of the medications side effects. Since I have been coming off the Keppra we can see how it has affected me and how I am becoming more myself again. So I got diagnosed with Epilepsy but didn't get any official diagnosis for my neurological issues even though we think we know what I have and my GP agrees I am just going to have to deal with what I have as it is without a diagnosis, it kind of sucks because a proper diagnosis can change a lot but I don't think they are willing to spend the time diagnosing me, not sure it would change much for me medically though. Someone said that if we had money that I would get more help with diagnosing and my epilepsy etc, thing is, when I first met Nate, we had money, and we spent it all trying to get me help, and still were treated the same as now. As though I am not worth it because I have such severe and complex disabilities, as though they'd rather spend their time fixing people who can contribute to society when I can't because of my disabilities, as though I am somehow lesser, not worthy because of the severe disabilities I have, and it sucks, but that is how I see it, I feel it. How they treat me, how they look at me, how they dismiss me as a case too complex to deal with and pass me over to someone else because they don't want to deal with it, so no, having money wouldn't make any difference at all, it wouldn't get me a diagnosis, because we tried for years and years, and all I got was rejection and pain. Going through that, trying to get us somewhere, we spent thousands and thousands and it got us nowhere and we ended up poor. Sometimes I wish we hadn't done that and could have used it to get the medical equipment I need now, but we didn't know then, we just knew something was really wrong with me and I was getting worse and noone wanted to help, and so I ended up as I am now and believe I am going to keep progressing with my disabilities. It used to really bother me, but I know, with the right adaptions I can continue to do those things that I like doing, my art, crafts, being with my Dreamer and Nate, just being me. So in the end a diagnosis would have been great, but it doesnt really matter, we can't predict what will happen with me physically, what will be damaged, or how to help it, but we will deal with it as it comes.

Haven't really been doing much else, watching TV series with Nate, Medium, Charmed, Ghost Whisperer, Smallville. We get the DVDs when we can afford them and they are cheap or on special, sometimes we have to wait a while for that. Have also been doing art on the iPad, its been great help for me with a lot of things helping me cope with things, I wouldn't be able to do any art without it at the moment so it has been good for that and reading books.

I got the Tango to trial yesterday, I really like it so far, it is different, but I can see how it could be helpful addition to my Evie as a backup or in certain situations where Evie is just too difficult to use. Have other things coming in on trial in the next few months so I can compare. I haven't like many communication devices, the Vmax was the first one I liked after years and years of trialling, so I wasn't expecting to like the tango when it arrived but playing around with it I like it, I really like the voice of it. It is bigger and heavier than I thought it would be but that doesn't matter so much for me as I would need anything mounted anyway.

Nate is doing ok, he is not better though, he still gets bad migraines etc and the doctors just couldnt help him with it, don't think they know what they are doing most the time. He also has his own disabilities to deal with whilst looking after me, something I think not many people are aware of or realise, it makes things more difficult in being a carer when you are sick as well. We are both managing as best we can though.

I don't think I will be able to catch up reading all the blogs I was following, its hard because it makes me feel like I missed a lot, but I can start reading again now and just leave it, no point in me putting myself in pain or stressing trying to catch up on things.

Loneliness

2011-05-20T15:52:00.000+10:00

I sometimes get very depressed. Sometimes I feel so alone in the world. I sometimes express this and often get replies to this expression. Your never alone, you have Nate and Dreamer.
I have trouble with these replies, it makes me feel like they don't understand. For a long time Nate didn't understand either. For me having Nate and Dreamer just isn't enough to stop the feelings I get, it doesn't always help. I love them dearly and they make my life so much better but there are times when I wish for more. there are times I wish I wasn't alone in bed, I wasn't stuck at home unable to go anywhere, that I had friends in real life, that I had some sort of a family, that I had more in my life than what it is now. Times when I wish that Nate wasn't the only person I could talk to, wasn't the only person I could be myself around, wasn't the only person I could tell all my secrets too. The feeling of loneliness and depression, it just isn't fixable just by having Nate and Dreamer in my life. I need more than that. I have more love than that to give, but sometimes I wonder if my disabilities are the reason I can't seem to make friends, if my disabilities make me seem aggressive and difficult to talk to, if my disabilities make other people scared of me. Sometimes I wonder if I am cursed to never have a friend that is interested in me and wants to spend time with me more often than once a year or two, that wants to be a major part of my life. Sometimes I wonder if my disabilities are why I get bullied, taken advantage of and used so often. I am so open and honest and trusting and maybe my honesty scares people away from me, yet I can't lie either, I have to say things as I see them and feel them, it doesn't mean I am right it's just how I view things. I wonder if my open nature makes me seem like an easy target to be used for others gain. Sometimes I hate who I am, what I am, how I am. Sometimes I get angry at having all these disabilities, get angry that I can't do things, can't understand people, can't seem to manage on my own in the world, and sometimes these dark thoughts turn to depression and sometimes it can get so bad that I become suicidal and then I feel like no one will possibly ever understand. and I feel alone in the world.

If you were so disabled you couldn't get out of bed, couldn't go outside, couldn't make friends, couldn't do anything but be in bed, would it not get you depressed? if the most interaction you could get from the world was online and online was the source of you being bullied and the only real life interaction you had was with your partner and your dog, would it not make you lonely sometimes? Maybe I am just different, I want more to my life than this.
Most the time I am a positive person, most the time I am happy and enjoying the little things in life, but sometimes, every now and then, the darkness inside me just takes over, and I just cant hold back those feelings that I am alone, that there is no one like me out there. And I hate being that way.

The Darkness Inside - Digital Art created on iPad by Titan

Love thy enemy

2011-05-14T23:24:00.000+10:00

I thought you were my friend

I stood by you till the end

but my innocence you see

is what blinded me

to the reality in front of me

its not what I thought

so I have to let you go

with a pain you'll never know

a pain you only grow

you stripped me of all I had

and still you wanted more

I'm still standing at the door

telling you I want no more

still you do all you can

to rid me of any friend I have

but what you don't know

is that I don't care

your just evil in the air

as I say goodbye

I know I will never die

my memory will be strong

to all who come along

they'll see who I'm meant to be

not the monster that you see

it wasn't meant to be

I know the truth

I have nothing to hide

I didn't say thank you

for a gift I didn't want

I couldn't be your friend

because you wouldn't see

the reality in front of me

for a moment my guilt was strong

till I realised all the wrong

that you had done to me

and how you continue on

trying to make my life a misery

so you all continue on

as I leave this note

know no matter what you do

I will not be broken

by the damage you have done

my scars will heal

you will never feel

the strength that I do

for what is in my heart

is pure and is true

I am not mad

I am not sad

I couldn't give a ounce of a damn

about the circle of hate you have created

things will happen as they are meant to be

I have complete confidence in me

that I have done no wrong

my life will carry on

I will find all the happiness

that I am meant to see

you will be consumed

in your darkness and your anger

I no longer care,

just for a moment you where there

a hard lesson I learned

you still have your turn

you cant consume me with hate

because all I have is love

forgiveness for those long gone

yes I shall go on

my life will be rich and strong

when you start to really care

nothing will be there

waiting for you

all the lies that you told,

the excuses that were bold

the pain you tried to bring

that left me with a just a sting

still I am here

still I can sing

you have nothing to show

no way to grow

you are still young

one day you'll see the damage you've done

I'll have moved on

your closure will be gone

so tell me my old friends

who is better in the end?

I know it is me

I am the one who is free

you can bully on

I will still sing my song

from the bottom of my heart

I hope that you heal

all that darkness you hold strong

goodbye old friend

Memories

2011-05-07T12:34:00.000+10:00

I have few memories of my early childhood years, the ones I do have are as clear in my memory as though they happened yesterday. Sometimes I replay them over and over in my head trying to understand why, what did I do, why did it happen, why. But I know deep down I will never understand why, I cannot understand the why's of today I will never understand the why's of yesterday and yet I still replay those scenes trying to piece everything together the puzzle of my life.
I can tell you the things I have been told for now, with the bits I remember as I have the courage to resurface those memories, memories I never want to recall, memories that come up at times I wish they wouldn't, memories that keep the darkness alive within me, that keeps my fear holding on, memories that keep me looking back, hoping I do not see them again. I see them though at times, that person in the supermarket that looks like him, that lady on the bus that looks like her, that voice I hear that sounds like her. That child being told off like I was, they are in everyone, they are everywhere around me and I have no escape, I am trapped and all I can do but hope that in some way, in some how that telling the pieces of my story give me some sort of freedom, some sort of peace that I may go on and really live instead of hide in these shadows, these dark corners of my mind, deep in fear, sorrow, depression and filled with dread. To get rid of these thoughts of death and ways to leave this pain behind and go to where I believe home may be. I want to be freed of this pain, and I have no idea if this will help, no idea but the hope I hold tightly that somehow things will change, always some flicker of light within me calling and that feeling of hope that one day things will be better, that one day I will be free of this pain and truly know what it means to live.

Sent from my iPad

Tired.

2011-04-25T20:44:00.000+10:00

Im tired. I seem to always want that which I will never get and it makes me wonder if it's worth going on at all, perhaps it's better for me to lock myself away and not deal with all these people, medical appointments I never want to go to, people who bully me online and in the dog world, people who like to tell me I'm not autistic despite being officially diagnosed several times. Sometimes I just think I might as well let it go and live my life alone locked up in my house, with my dog and love of my life and just not interact with the world like I used to be. What is the point when all I feel is pain and heartache, I wanted friends and family but now I'm not sure I want anything anymore. I don't get listened to when I have communication, I don't get listened to when I don't have communication. Without communication my autism is the cause of all my medical problems, with it I'm apparently not autistic and crazy and should see a psychiatrist. I cant apparently have an assistance dog because I don't speak or am unable to work, I'm happy for us to train our own dog but apparently i cant do that either so i train my dog to help me at home, i might as well not go out, whats the point anyway. I feel like people aren't really interested in wanting to know me for me and not for my illness or for their own personal gains. Im a person too, I have feelings and dreams and hopes but it seems no matter how far I reach, no matter how high I climb, I never reach any of my desires and I just want to lock myself back inside myself and live back into my world where it all made sense and i didn't have to deal with anyone, lonely but safe. I just keep getting stuffed around and I'm tired. I tried so hard but there is a time when it is too much for me, where I can no longer go on getting the same pain over and over again. My life is worth more than that. At least I matter to somebody. There is only so much I can take.

First Memories

2011-04-19T13:21:00.000+10:00

My first memory is when I was about 3 or 4 i think. I am feeling crowded in a room. Everything is blurry and I feel like I'm trying to make my way through a maze of dancing legs that look so huge and scary. I'm trying to find my father but I am so overwhelmed with fear at these huge legs. It is like I am in a forest thick with trees only that the trees are unpredictable, they are loud and they move and I am scared one of them is going to crush me. I don't know how I got to my father in the end, there is a blank between that and him picking me up into his arms, safe, comforting. I had a bottle in my mouth, it was filled with coke half way, I'd already drunk half the bottle. I would carry it between my teeth, holding it by the teat with my teeth biting it, all day, every day, always half full, the weight of it helping me feel safe, secure. It was my version of a dummy or thumbsucking and I would never be without it, I don't know when it was taken from me, likely to make me look more normal I don't know. It is one of the only safe memories, good memories I have of my childhood, they are rare and hard to find in my head. I always thought my father, being with him, would be safe, that if I could stay with him I would be safe but it was never possible.

Fundraising, of which we are NOT.

2011-04-18T16:25:00.000+10:00

Once again we have to clarify, We are NOT asking for fundraising or donations or money, and never will be in any posting.
My last post I am just venting about a certain part of my life that affects me, which is what this blog is about, my life I am going to vent and write about things that upset me.
We are NOT fundraising and NEVER will be, we get what we can on our own when we can with our own money, sometimes friends buy us gifts to help but it is not asked for, that is what friends do.
The wishlist on this blog has it clear at the top we are not fundraising either, it is a point of reference for us and friends and that is all.
Please stop with the bullying, We are NOT fundraising.

wheelchair

2011-04-10T15:43:00.001+10:00

I hate my wheelchair, I can last about five minutes if that, before trying to get out of it again, waiting time for dr appts is beyond that, sometimes hours. Just getting out of the house and to the car is already too long, getting out of the car and too the waiting room, I've been in my chair too long, then the appointment, and getting back to the car. It's unbearable to go through. It's falling apart but I can't just be put into any random wheelchair either. The one I have barely holds me in it, I have bad scoliosis so I am falling out the right side of it.
It's so bad that when I'm out in it, the headrest keeps moving off and knocking me in the head, the headrest isn't even at my head, I'm short, the top of my head just touches the bottom of the headrest. The leg rests keep moving and the left one can't hold my leg on it. I get severe pain in my tailbone from the pressure of it, my legs cramp and I get unbearable pain in my back from it. I cant push myself because if I do I get cuts and scratches on my hands, and its hard to use my arms and hands for normal things let alone using my wheelchair, this takes my independence away. And I move a lot because of my spasticity, which has it's own set of problems. But this wheelchair, it's all I have and it's frustrating. If you had to buy your legs would you consider this acceptable? People mean well but a basic off the shelf chair isn't meant for long term severe problems like mine. I need the proper pressure supports, laterals, head rest at the right height, a harness and so on to be comfortable in a chair and the cost of a prescription and then the chair is not cheap, not for anyone, not even for someone who works unless they're a millionaire or something, which isn't many people.
So basically any time I am out of my bed, in my chair, I'm in unbearable pain and the sucky thing is if I don't get into that chair to go to an appointment no one is going to come out to see me and I'll be stuck in my bed with no medical care.
People look at my chair and think it's a great chair, sure maybe for someone else, it has a high back and head rest and calf rests but those things barely help me or maybe all they see is the great sheepskin that was given by a friend to help with my pressure sores ( thank you), or the awesome communication device with the great mount that good friends helped me to get ( thank you too), but you take that away and you have one big heavy piece of metal that is painful for most people.
A wheelchair is more than just a chair a proper wheelchair should be comfortable enough to live in, sleep in, eat in, work in, play in, do everything in, because reality is, it's that wheelchair that gives one mobility or the alternative is being bed bound and right now, even with this crappy wheelchair I consider myself bed bound.

Update

2011-04-08T16:27:00.000+10:00

For those of you who pay attention, I have a big blog post (below) and lots of pics to upload. I don't know when though, more important things to deal with at the moment.

--------------------------

Haven't written in a while so this update will be long. A lot has happened these past few weeks and I wasn't up to posting Everyday. I'm not sure what is going to happen but will update while I can. I still have a lot of pics to upload that I'll separate over a few posts when I feel up to it, I hope to get back to daily posting sometime soon, but depends on how things go here.

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Sunday 20th March 2011
Woke up sick, didn't do much. Watched Smallville and House with Nate.
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Monday 21st March
Woke up sick again. Read blogs and did some communication boards editing. Had some stew with ravioli for dinner. Yummy chocolate cake and ice-cream for dessert.

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Tuesday 22nd
Had to get up really early for Nates MRI appointment that was at 6:30am was grumpy with early morning wake up. Nate really sick through the MRI. We had some McDonalds breakfast. Got a phone call about a unit offer, didn't sound suitable. Went with Nate to look, couldn't tell much from outside but I don't think we should have been offered a unit.
Watched Smallville with Nate. Went to bed early, had seizure and fell out of bed, wasn't fun.

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Wednesday 23rd March
Got up early for ultrasound. Was feeling sick and Nauseous. Ultrasound running late. Was painful getting onto the table and my legs cramped up. Mostly normal ultrasound, have an adhesion on my right ovary, is stuck to my uterus causing me constant pain.
After we went to petbarn to get Dreamer something for his bronzing and got him a new collar.
Went to hospital for my 10 weekly blood test and injection.
Went home.
Sorted some picture cards.
Watched some House and Smallville with Nate.

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Thursday 25 th
Got up early. Went to view apartment man running late. Apartment looked accessible but lift was too small and I couldn't access the courtyard for Dreamer. Went home and had a nap. Got an unbearable pain cramp on my side. Watched some Smallville and House with Nate. (You are probably bored of reading this by now.)

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Friday 25 march
Nate see neurologist, told me he won't be going back to see him doesnt have his best interests. Glad nothing major on his MRI has to have antibiotics and some vitamins. Don't have money so had to choose what of my and his meds to get.
Went to Dr for my injection and blood test. Told him that I don't think the injections are working, I believe they are making me worse not better like intended. Had slow cooker meal Nate made for dinner. Had an argument with Nate.

watched House with Nate.

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Saturday 26 March

didn't do much, was dizzy, had a migraine and really depressed.

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Sunday 27 March

didn't record anything in my diary, feeling too sick. heard some mice in the roof.

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Monday 28 March

8:30am Nate woke me to tell me Dreamer isn't urinating, I told him to give him some Lectade and went back to sleep.

Nate came back and woke me at 9am and told me he still isn't urinating after having lectade. I got up and got dressed as fast as I could, took Dreamer to the vets. I was worried, Dalmatians are known to get urine stones and knew this was what was wrong.

10:30 we got to the vets, vet got a urine sample, some small drips. Tried to put a catheter in but it wouldnt go in, he definately has a stone stuck blocking his passage. Vet drew me a picture of what he was going to do. I said goodbye to dreamer hoping he wouldn't be at the vet for long.

We got some McDonald's on the way home, mainly to calm me down. Went by the post office to check our PO box there was a parcel there with some stuff from Outback Pampering, was just the right time to get that.

Went home and we rearranged our room to have Dreamer in it when he was able to come home so we could better look after him.

4pm Nate rings the vet, there is 5 bladder stones in Dreamer one big one but not as big as the one blocking his urine. Told he was given some pain relief and was trying to play with the other dogs. He did a bit of a pee, thought the lectade helped. Told Dreamer would be staying overnight.

Watched some house with Nate.

7pm Nate rang the vet, surgery went well and Dreamer seemed to be doing ok.

8pm we stopped watching House, Nate doesn't like watching too much of the same show all at once, but I find it calming and helps keep my mind off things.

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Tuesday 29th March

9am Nate woke me up to tell me Dreamer isn't doing well, wont stop bleeding and needs a transfusion, asked me if I was ok to have him desexed. I told him to do whatever neccessary to save him. He told me he will be at the vets a few days now because of the complications. I not sure what to do feel worried.

Friend came over and visited. showed her Evie and some puppy pics of Dreamer on Evie, didnt really know how to be or communicate as usual. Always feel lost when visitors are over.

Went out to the Dr, got my blood test results, something wrong with my thyroid and something else too high (personal) which means the injections are doing the opposite of what they are supposed to.

Went to get our prescriptions and had some McDonald's. Had a look in some shops, saw an iPad 2, looked good, I liked how light it was.

Bought Ghost Whisperer DVD to watch.

Went home and had an argument with Nate about my communication, Nate tried to calm me down. Had a big discussion about things going on with me.

We went back out to get some snacks and things to watch movies with. Come home and Nate ring the vet to see how Dreamer is, he did a full stream of urine, sounded like he was ok, not interested in eating much, think he probably isn't used to the food, but he never was food motivated either. Keeping him overnight for observation.

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Wednesday 30 March

Told that Dreamer has another obstruction and going to need another surgery. Don't know when he will be coming home and I can't visit him because he gets too excited seeing me and could hurt himself more. Feel really depressed with all that is going on.

Had to go out with Nate to get printer ink. Saw some things I wanted. Nate got me a bookmark I liked.

Came home and had a meltdown with Nate.

Scared to lose Dreamer. feeling really depressed and considered going to hospital but didn't because of what is happening with Dreamer and feel like Nate and Dreamer are the only things I am holding on to to get me through each day.

Nate ring the vet to see how Dreamer is going. Have to get some things for when he comes home and put Dreamer on a special diet.

Watched some Ghost Whisperer with Nate.

Was sick during the night.

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Thursday 31st March

Im feeling really sick. Having more meltdowns and arguing with Nate a lot. Feeling really depressed and agitated, not sure what is going on, having trouble understanding everything that is happening with Dreamer. Feel like people think I understand more than I actually do. Don't want to go to the appointment I have tomorrow, feel like everyone treats me like I am crazy because of my past when something is wrong with me physically and I am not get help for it.

Told I can't see Dreamer today. He passed all his stones, just waiting for all the "sand" to pass through and his wound to close, (place left open for him to urinate through and pass stones). Might be able to see him tommorrow after my appointment.

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Friday 1st April

got a really bad letter from the neurologist. cancelled my appointment, don't want to see anyone connected with that hospital anymore, ever since I went there I have been treated badly and I don't think it is worth it. Neurologist couldn't respect my privacy and how important my past abuse was.

Went to visit Dreamer. He seemed ok, out of it from the meds and a bit distant but was happy to see me, gave me a half smile. Asked about Taite with assistance work and his hip, told should be ok so long as we keep his weight down which would have done anyway. Just waiting for him to be ok enough to come home. Was really hard to leave him there.

Got a phone call from Housing about another house offer but just don't trust it anymore. Couldn't tell Nate anything about it and we can't know anything about it until the 12th of April, wasn't sure what the reason for the call was then if there is nothing we can really know.

Watched Ghost Whisperer with Nate.

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Saturday 2nd April

Go to Vets, Nate hit his head getting into the car, I was worried about him.

Dreamer bled getting into the car, I told Nate he shouldn't have been jumping and the vet shouldnt have said it was ok, he should have been lifted into the car. I sat holding him all the way home, was so glad to have him come home with us, was told was a trial run to see how he went, hopefully he is ok and doesn't bleed bad again.

Dreamer kept knocking himself with his cone thing on.

Had a big panic attack at night because a cocroach was crawling on me, I have a great fear of them.

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Sunday 3rd april

Helped Nate with bandage on Dreamer. Feel tired and grumpy at getting up early but think I will have to to help with Dreamer. Had trouble sleeping because I could hear dreamer licking all night, all he can lick is his cone, don't think he realises that. I wonder when he will be healed up properly. Worried he won't come home today from the vet visit.

Vet visit ok, Dreamer doing better at home and looking better from being home than being at the vets, was relieved he could stay with us now. Dreamer seemed happier to be home again with us too. Told there is a 90% chance he will get another blockage, pray that he wont.

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Didn't keep a diary after that, just been helping to look after Dreamer, he is still bleeding out when toileting and he shakes himself a lot making himself bleed. The surgery done on him left a second hole in his penis, so he would be peeing out of two holes so that he could pass the stones, and the second hole will heal naturally so that the tube he pees through isn't smaller from stitches in case he gets more stones. He was desexed to save him from bleeding too much or from getting an erection when he pees because that can affect the stones going through or him bleeding again. I'm not fussed that he was desexed just that he gets better, there is plenty I can do with him even if he is desexed, just means his show career is over but it doesnt matter.

Have been watching Ghost Whisperer with Nate all week, helping with Dreamer and resting, not doing much, I am not really well myself. Decided not to keep having the injections and see how I go as they were making me worse. Nate looking for a new neurologist for me to see. I go back to the Gyno next week and see what they will do for my issues for that. I'm not up to doing much at the moment. Just hoping Dreamer heals up, he thinks he can run around and do what he likes but he isn't healed and he doesn't like having to be resting all the time, he is an active boy. I am just really glad to have him still with me, we don't have his test results yet, they were sent to Minnesotta and are waiting to hear back what type of stones he had and what diet to put him on from there. I have still been taking photos every now and then just not everyday because I am not up to it, will upload them when I can slowly.

Hopefully I get a bit better soon and can get back to my normal routines of posting and things again.

Titan

My Week - 19/03/2011

2011-03-19T19:22:00.000+11:00

Saturday
Had computer problems after posting my blog post. Am a bit tired of my laptop freezing up all the time, can't wait to get a new computer.
Had ravioli for dinner. Got a spammer on my blog. Checked the danmar website with Nate to clarify the helmet options I need for a friend. Watched some House and Smallville with Nate.

Sunday
Weighed myself, have lost 31kgs since I started to lose weight, I have to lose another 7kgs to get out of the obese category and into overweight category, which is good since I used to be morbidly obese. I am a bit worried about the weight loss though as I'm losing because I am constantly sick and not because I am making any actual effort to lose weight, makes me wonder how low it would be if I had been trying to lose this weight all this time, it scares me.
We finished updating and laminating my medical communication passports.
Had lasagna for dinner.
Had a lot of trouble uploading the photos to the blog because my laptop kept freezing up.
Played some games then watched some House with Nate.

Monday

Woke Up in Pain. Nate sleep most the day. Didn't do much.

Watched some Smallville and House with Nate.

Tuesday
Had to get up early for an appointment. Forgot my stylus to communicate on Evie which made things a bit hard for me. Waiting for parking was awful. Had to wait two hours in the hospital to see the doctor. Was taken to one room and talked to by the doctor then had to change rooms, I didn't like this, I don't like a sudden change like that and it made it even harder for me to concentrate and communicate what I wanted to say. I was very nauseous and kept bringing up vomit, I was scared I was going to vomit on the doctor or worse on Evie.
The doctor kept asking me several questions at a time and I got really confused, I could only answer one question at a time and I start answering the first question and I'm being asked several questions more questions at once, it was too much for me and making me anxious. Was told I had other options than having surgery for my problems, I was happy to hear that but really mad the other doctor hadn't given me those options. I hope that they help and I don't have to have the surgery. Was booked in for an ultrasound and then will find out after the results what they will offer. Not looking forward to it.
Went to the shopping centre, got a surprise, was able to get my iPad!
Saw some Thomas toys I wanted.
Went and had some McDonald's, I spilt my sundae on my new camera.
Went to Kmart, had some PlayStation 2 games I wanted and some littlest pet shop Blythe dolls I want.
There were kids running up and down the store and it was really bothering me.
There were some books on special I wanted but I had already spent my money getting my camera the week before.
My mobile doesn't seem to be working to get messages from Nate in the shopping centre, it is a bit of a problem for us because we rely on the mobiles for communicating with each other, and for emergencies. I have been looking at mobiles I might like and have one picked out, just waiting to get the money together in a few months, few more more important things we have to do first.
Went home, I opened my new iPad and we set it up with the computer. Then watched some house with Nate. I got sick and couldn't sleep. Was feeling really depressed.

Wednesday
Woke up and was vomiting. Had to take some nausea medication. Had a bad migraine, neck pain and felt like I was getting electric shocks down my spine, symptoms I've had for a long time.
Had some Chinese for lunch with Nate.
Hand was shaking bad and had really hard time using my spoon. Worried about how bad my left hand is getting now.
Watched some House and Smallville with Nate.
Played some Drawn game. Had really bad kidney pain.

Thursday
Woke up vomiting again. Had anti nausea medication, seemed to help. Still have my migraine and neck pain.
Construction work outside was too loud wasn't coping much. Spilt my drink over my iPad, luckily didn't affect it, most of it going on the floor instead.
Shaking so bad couldn't hold my cup.
Watched some Smallville with Nate.

Friday
Woke up in severe pain on my right side. Nate came home with new script for my reflux and results of the CT scan from my emergency trip to the hospital. CT scan did show something but they didn't investigate it, was a bit annoyed they sent me home like that. Think the kidney pain I have been getting isn't my kidneys.
Nate bought me some books on sale.
Got a letter about my son that I didn't understand how it came to this address or why I got it when I'm not his guardian. Bit scared family is going to find me now.
Having problems with the dynavox editing software, we making new boards and when we go back the page name is there but the page won't open so have to start again, is taking a lot of our time.
Had another meltdown with Nate, talked about a lot of stuff but I haven't told Nate everything going on with me because I feel like he is too sick, everything is different and I am not coping. Am very depressed and suicidal, am worried it's my medication because I don't usually feel this way but a lot is going on right now too so I don't know.
Nate dropped my box of things by accident but I got annoyed about it. Even though things look like a mess with my stuff most the time I still know where it is and put things in certain ways to help me access them easier.
Had some dinner with Nate and my throat started cramping again. I don't think my injections are working, I'm getting worse not better and it scares me.
Watched some Smallville and House with Nate.

Today
Woke up really depressed and suicidal, considered going to hospital but didn't see the point, not much they ever done for me in the past. Got a bit angry at how people have treated me with my disabilities. So many people don't want to know me once they correspond with me and find out how severe my disabilities are and I end up getting hurt all the time because I hope too much and keep getting let down. Feel like rarely anyone understands how I feel or what I try to express when I post things online. I try to understand everyone else but I feel like I'm always the one doing all the work for friendships and it just really hurts.
Am still worried about Nate and how sick he is, not sure how much longer we can both go on like this with things this way.
Have unbearable stomach pain. Got sick again, feel like I am holding out for this gastro appointment in April.
Tried to do more editing for my Evie boards but the pages were gone again, couldn't find anything on dynavox website about it, is getting a bit annoying.

And that is where I am now. Just trying to hold on and keep going. My meltdowns have increased a lot since Nate got sick and I don't communicate as much anymore, just don't see the point at the moment. Am feeling really alone and depressed. Have spoken a bit to Nate about it but not everything. I'm really sick but don't want to bother Nate about it while he is sick. Trying to just get through one day at a time, just barely coping with everything.

Titan

Father - My Past Series - Post 2

2011-03-18T15:36:00.000+11:00

My father was also born in Uruguay. He had a mathematics degree, when he came to Australia he became a mechanic. I don't know much about him. He was there for the first three years of my life, then my mother divorced him claiming he was abusive. I don't believe that to be true. We had visits with him every weekend and I never wanted to go home after these visits. I would scream and cry and have a full meltdown at having to go home, I wanted to stay with my dad, but I had no choice as my mother had custody through her lies and deceit, and the mother back then always got custody. I always knew my father to be a quiet man and he never spoke much. After I was 5 I was cut off from him, I don't know why, my mother never told me why. When I was ten I got a birthday card from him and I was able to get reconnected. His new wife told me that he had searched for me for years but my mother kept me away and hidden from him. I don't know why, perhaps to hurt me I can think of no other reason. I always felt safe with my father, but the distance that the 5 years made I didn't really know him, and he had a new life, a new wife, a new daughter and I never felt I could fit into that. And I didn't like his wife much, she was loud and tall and never understood anything about me, she only saw what she wanted to see. I had to cut myself off from my father for reasons I can explain later.

Nothing

2011-03-17T16:51:00.000+11:00

Tried to think what I wanted to post today and couldnt come up with anything. I am too sick, Nate is too sick, we are both doing the best we can but I couldn't think of anything to post, I couldn't focus to choose even one of my poems, or anything, this will have to do for today, I have nothing. Am praying, hoping with everything I have that Nate will get better, that they will find what is wrong and that it is not to serious and it can be treated. I am thankful to all of those thinking of us and the help that you all have given us.

I miss my daddy

2011-03-16T16:29:00.000+11:00

I have a certain different relationship with Nate where if you don't know or understand what BDSM means then this might not make sense to you but that is my life and how we are and this is about me and Nate not my biological family.

I miss my daddy
He is here but he isn't really here
His mind taken by infection
His patience gone
I miss my daddy, the one who looks after me
The one who gives me my medicine on time
The one who doesn't scream at me when I'm having a meltdown
The one who holds me tight and knows how to do everything just right
I miss my daddy, where where can he be
Who is that stranger looking at me
I miss my daddy, i want him back again but we don't know when
I miss my daddy
I'm scared and hurt
Where is my daddy?
Who is this stranger sleeping and screaming and not knowing it hurts?
I miss my daddy, it is all different and I want it the same
Safe and comforting
I miss my daddy the one who doesn't fall asleep watching a movie with me
I miss my daddy
I feel so alone
I want my daddy, he let's me know I have a real home
Come make to me daddy, I can't do this alone
I miss my daddy
Don't leave me alone

Poetry - Silent Heartache

2011-03-15T23:45:00.000+11:00

Silent Heartache

Pain in my heart is too much
I want to lock myself away
I try and ignore it and it just goes to my head
Everything spins around
I try and take it all back and hope that you’ll come back around
It doesn’t ever work
And why does my heart hurt
Because you were the best love I’d ever found

They look at my breasts and try to imagine the rest
Even though its forbidden ground
They can’t get enough and they start to get rough
And when you say no
They don’t even try to back down

I lay there awake and try not to break
Until they’ve had there fun on the ground
I look in their eyes, don’t apologise
You’ll get the pain worse next time around
Dust off my dress
Leave my feelings with the rest
And get on with the day
My childhood gone
It wasn’t there to begin with.

Happiness lost ,confused and torn
No idea which way to go
Sadness held in silence to keep
No one to tell what I’d been through

They come back, take advantage of that
And I have more to get through
My heart weeps, My mind bleeds, My emotions rip,
My thoughts tear , I want to scream
Let it all out
But my fear keeps me in silence

What if she knew, what if he heard, what would they do
Ill suffer in silence, keep everyone safe
Stop them from doing it to you

Don’t see my pain, when you listen to the rain
Let me make love to you
Leave me to bleed, I do it for you
Maybe I’ll weep too
Can you see my anger
Do you care?
I’ll take your pain, released in the rain
It isn’t always there

So when its too much
Would you care not to touch, comfort or just sit there
No matter what hurt is done
When you look in my eyes
Who do you see
Because no one but me lives there

And when I want to die
For who would you cry
Me or the heartache out there
I just need to know
Before I roll in the snow
Is it me or for him
You really care?

Autism Comments

2011-03-14T17:39:00.000+11:00

"We all have a bit of Autism in us" "You don't look Autistic" "I thought you were just shy" "Really? You must be really high functioning"

They are simple comments, they mean well, I think they mean well. They I think, are trying to make me feel better, feel less different, but they all to me, disvalidate my diagnosis. Make it seem like Autism isn't the thing that it is for me. Make it seem like I am just like everyone else, but I am not. We don't all have a bit of Autism in us, there wouldn't be the diagnosis of Autism at all if that were true, I would be just a bit strange or different but not Autistic.
There is a difference, for me it is big, and these comments make the chasm between me and them seem like a huge deep hole that I cannot jump across or reach. I find it really uncomfortable when I hear these comments, it takes me a while to understand what they are saying, and then I feel anger, hurt, I feel like I don't belong, like Autism is just another name for different, but it is more than different, the difficulties make me different. I am different. Different but not wrong.
We don't all have a bit of Autism in us, we don't all have the same difficulties Autism presents us with. Sure I have some similiarities with things to neurotypical people but I struggle to cope in a world that is difficult to understand, where things don't come naturally to me, where being social is a mammoth task that sometimes I want to say just f it all I'd rather be alone, but I wouldnt rather be alone really, Id rather be included, accepted, understood. And these comments, they lack the understanding that is needed of what Autism is. Awareness isn't enough, I have been seeing this around a bit lately, but I didn't know what it meant. Awareness just means you know there is this thing called Autism that makes things hard for some people, I need to have understanding too, need to have people not only aware but understanding of what Autism means, what it is, what difficulties it causes and why, and then I need to be included, I need help to adapt, help to have real friendships.
Autism doesn't look like anything, I can appear completely normal, many Autistic's can completely pass for being normal through therapy and all sorts of adaptions, but underneath, it still doesn't make me neurotypical, it is still Autism in there and that will never change. Shy, really? my negative reactions, rocking, stimming, meltdowns, running away, that all means I am just shy? I am sure in some it would appear that we are shy, Social things are difficult, that shy person may just be someone wanting to be included, some people are just shy, but I am not, and if you get told I am Autistic, don't say you thought I was just shy, it completely dismisses what you were just told as if it doesn't matter, you wouldn't be told I have Autism if it didn't matter, it matters, it matters a great deal. High functioning, what are you comparing me to? What is high functioning mean to you? Because I don't really know and I am not diagnosed as high functioning. I wouldn't be with Nate 24/7 if I was high functioning, I wouldn't be doing the things I do to cope if I could be high functioning? Are you trying to say I am smart? Are you confusing Autism with intellectual disability? What are you really trying to tell me. All these statements they bother me, they make me feel less, they point out how different I really am, they devalue my communication and expression of a major part of my life. I am Autistic, Autistic is me, we all have Autism differently, but it is still Autism. When someone tells you I have Autism, don't tell them/me these things, acknowledge and accept what is being communicated. We are not all the same. Accept, and understand my difference, and include me, I will appreciate it more than these comments.

The Weeks Photo's - 13/03/2011

2011-03-13T20:25:00.000+11:00

Monday - 7/3/2011- Hallway Taken with Evie

Tuesday - 8/3/2011
Dreamer Half Smile

Dreamer

House Season Two

Photo Albums

Wednesday - 9/3/2011
Taite Picture

Officeworks Specials

GorillaPod

Smallville, electric toothbrush, hair elastics

New Camera

Thursday - 10/3/2011
First pics with new camera

CarPark

Sky

Cat claiming the yard (one of the strays)

Movie -Dreamer Greeting us when we come home

Friday Day 70- 11/3/2011
Talking Thomas

Pen

Ecobutton

Remnants book

Talking Thomas

Saturday - 12/3/2011 Bedtime

My Week - 12/03/2011

2011-03-12T15:44:00.000+11:00

Monday- Already posted about.

Tuesday- Already posted.
What I didn't post about was an incident at Big W. They had iPad's on special, and we were going to buy one. Nate went and asked for one of these 16GB iPad's and the sales lady just replied to him "Nup" of course how is anyone supposed to understand what that means? It took him a moment to process what was going on, so he said to her, "Am I supposed to guess that means there aren't any left?" and the lady replied "Yep" the iPad's were out of stock and you couldn't layby any or anything, was kind of a good thing for us anyway that there werent any left it just wasn't meant to be at the time. But if there werent any, shouldn't they have put on the sign advertising it they were out of stock and also, this lady should have been a bit more clear instead of when someone asks to buy something just saying "Nup" I think is rude and confusing for the customer. Good customer service seems to be lacking lately.

Wednesday- Nate Ct scan, showed something but we don't know what it means yet.
Then we went to Penrith. Nate had to get medication and I went to look in the Kodak store. I got stuck and couldn't turn around because a ladder was in the way where it shouldn't have been. One of the workers in the store was asking me if I was ok but I couldnt answer her because I was trying to get around with my chair. Then once I finally got out she started joking and saying it's a tight squeeze but I just got annoyed it wouldn't be an issue if the ladder that wasn't being used wasn't in the way. I went back to Nathan to try and tell him but he wasn't listening to me, he just kept telling me to calm down I hate it when I'm upset and I get told to calm down like I have no right to be upset I feel like it dismisses my feelings altogether. I needed something and he had my bag but he was distracted with something else, and I needed my sheepskin on my chair fixed but I felt like he was just telling me to shut up and be quiet and not wanting to hear what I say, so I got a bit annoyed. We then went back to the Kodak store beause I wanted an enlargement printed. but it was coming up funny on the machine. The same lady from before came and started talking really loud about it trying to tell us why it was happening, thing was I was already knowing why and was trying to talk to Nate about it, but the lady wouldnt leave us alone even though Nate told her several times to leave us. And I was starting to have a meltdown, there was this annoying music playing, and the lady screaming at us and I was trying to tell Nate something it was all becoming too much. Even as she was walking away and I was trying to communicate to Nate on my Evie, she screamed out what she wanted to say in the first place, it really bothered me, I had a meltdown. I tried to calm myself and tried to tell Nate what I was feeling and why I was upset, and what was going on with the photo. He said he would talk with the guy that did my last photo because he understood the problem with the file and could print up the photo properly, but this lady kept trying to get in the way and Nate kept telling her he wasn't wanting to deal with her, she just wasn't understanding. Her customer service skills seemed lacking. Nate waited for the guy and he fixed up the photo for me and I bought a pink Gorrillapod there.
There were these pendants there and I am thinking about getting a photo of Dreamer printed onto one to have when I get some pocket money saved later on.
We then went and got a Bacon and Cheese Pretzel for lunch. It was really yummy, I like them, but I think they make me sick so I don't think I can have them anymore. I feel like I am getting so limited in what I can actually eat anymore and it is frustrating, I used to love food, really love it, and now Im becoming to hate it. I don't like things been that way.
We went to Target and they also had the iPads on special, Nate asked if we can layby them and we could so we put one on layby. Should be able to get it out in 6 weeks or so. I had a look at the mobiles but I couldn't decide. We then went to Big W but wasn't anything interesting there.
We went out to Dick Smith and I looked at the phones and cameras and other stuff. Saw one of the Canon cameras on Special but I told Nate I had to think about it. Looked at the computers because I am wanting to get one this year but a lot of them don't have the information on them and I don't like having to talk to the store people.
We then went to Toys R Us, and there were two Barbies there I really wanted, they are Twilight Barbies but I didn't have the money for them. Also was these other toys I liked and I showed Nathan but toys are so expensive and I don't have the money for any of them. I went to see if they had anymore of the bottles I use to drink out of but there were none left. They are just really hard to find. Went to see the Thomas toys but all the ones that were on special were already gone so we didn't get anything.
We then went to office works and I asked Nate if he wanted to use my headphones because of his headache and they always have everything up too loud in there and he said he didnt, I said ok and then he screamed at me. I had another meltdown. I don't like being screamed at. Nate came back to the car and I tried to talk to him about what was going on and why I was getting upset, but then he just screamed at me again so I got out of the car because I couldn't handle it anymore. When things get too overwhelming for me I run away or wander off, one of the things in my health record noted as "challenging behaviours" It can be dangerous sometimes though because I don't notice things around me as much as other people would and makes me vulnerable.
Inside officeworks a guy kept following me around the store, it was really weird and uncomfortable. Nate came and got me and I tried to talk to him again and told him that I felt that he just wasnt listening to me and that he kept making me feel like he didn't value my feelings and telling me to be quiet and shutup, and saying ok the way he had been to me meant to me he didn't want me to communicate to him at all. I said to him what is the point of me trying to communicate if he doesnt want to listen to me anyway. He tried to calm me down and explain things. I just felt like since he has been sick he had been screaming at me. He said that all I had been doing is screaming at him, I told him it is because he has been screaming at me first and I am just reacting to the screaming. I don't like being shouted at. He told me if I had even considered that he was shouting because he can't hear. I feel like sometimes he completely forgets my autism and how things work for me. How am I supposed to know why he is shouting or that he can't hear if he doesn't even tell me? I don't know why most people do what they do unless they tell me, Im not going to know why he is doing something and Im going to take something directly at me because he is the one I am closest to. I was just really frustrated and told him everything I was going through and feeling because of how he was shouting and how everything changed since he was sick and all. He told me he would never shout at me or tell me to shut up, I still have issues with this. I find it hard sometimes to believe things when it happens to me so often and he couldn't even remember telling me to shut up, I tried to tell him when it was and where and he was telling me it wasn't at me it was at someone else. I think its possible but I didn't see anyone else there, but then there could have been because I have no peripheral vision on my left side and am deaf in my left ear so someone could have been there. I didn't want to keep going on about it, I just accepted what he said and we kept looking through the store. There were some things on special and I got a bag and a book and some pouches and things. The guy I had told Nate about him, he kept following me even though Nate was with me now, Nate said he only backed off a bit when he realized I was with him. It was really weird and creeped me out a bit.
I looked at the computers there and there was a touchscreen one there really cheap but I knew I wouldnt be able to get it because I have to save and by the time I have the money it will likely be gone. I also looked at the cameras with Nate and saw the same canon one there but not on Special. I told Nate I wanted to get the one on special back at Dick Smith, because the camera I have now isn't working properly anymore and he drove me back there to get the camera. He asked if there was any in stock and I got to choose between grey and blue, I chose blue. Then we went home. It will get me by till I get the camera I really want next year.
I thought I had an SD card, because Nate bought me a 4GB one not too long ago but I searched the house and couldn't find the card, only the packet it came in. We tried some batteries in the camera but they werent strong enough for the camera, so Nate said he would take me to get the batteries and card the next day.

Thursday- Nate took me to officeworks, I got my batteries and SD card and some more of those things on special. There were signs for things on Special and we picked them up but when we got them they werent on special so Nate had to get refunds for them. It would be good if they organized things properly and put them in the right place. I put the card and batteries into my new camera and played around with it taking photos. I really like it.
We went to Target after and I saw a Tinkerbell pencil case i liked and a I love you sign language rubber but the pencil case was way too expensive just because it was Tinkerbell. We were going to buy the rubber but the line was so long that we left it, didn't want to wait that long just for one rubber.

Friday- I woke up late. Got an email giving some good news. Went to officeworks and bought a pencil case and some tape and got two Eco buttons on Special. Nate got himself a GPS case on special but we don't have a GPS yet though Nate needs one. I tried to use the tape for something in the car but couldn't figure out how to get it to work. Told Nate I'd figure it out at home later.
Went to Big W and I showed Nate a book I want called "Hello Thomas" but it was broken so we will try find it somewhere else.
Bought a Take-n-Play Talking Thomas I collect the Take-nPlay Thomas vehicles
Went to the doctors for my injection. Was really loud lady in the surgery that was bothering me and Nate, could see Nate's head was hurting. Got my injection, but I was annoyed because the doctor didn't count or tell me the injection was coming, it is one thing that is on all my communication things, I have to know when it is coming. I also hate the small talk the Doctor tries to do with me, I don't get it and find it annoying.
Then Nate took me to target to look around while he talk to the doctor about his medical things. There was a person swearing at everything in the shop. Made me uncomfortable because it scares me when people shout. Then I could feel someone staring at me and I looked up and there was this kid staring at me, and I noticed he was disabled and wondered why he was staring at me, He looked really uncomfortable struggling to walk. Sometimes I wonder why people don't have the equipment they need, they look like they are in so much pain and so uncomfortable but I can't know their situation, I could be completely wrong about it all.
Went to the post office and we had lots of mail because we hadn't been there in a long time. I got my DOGS NSW magazine.
Figured out the tape at home, it said right on it remove this protective covering, it worked after that.
Dreamer had a bath, he was nice and quiet and calm during the bath but afterwards he was yelping like we had tried to hurt him but he was just trying to get attention. Dalmatians are very vocal, dreamer is a big talker.
Nate told me there was a really big electricity bill which means that it would change when I get my computer and iPad and things, would just take longer. I hate when things change but I know that some things can't be helped and the rent, electricity, gas and phone all have to be paid first before we get things.
We updated my Permanent Health Record, took 3 hours to do. All this communication stuff is a lot of work. We still didn't finish updating everything.

Saturday- woke up late again to Dreamer whining like we were going out but we weren't going out. I had a bad migraine. I haven't been getting my epilepsy meds on time and I have been having seizures again. I still have a few seizures a week whereas before was daily, but I know medications will only reduce my seizures, I don't think I will ever be seizure free.
Then Nate told me he had been sick and realized that is why Dreamer was whining he always thinks he needs to be helping. I went online to read my emails and blogs and things and wrote this post. I always get Nate to read and help edit my posts so they dont sound wrong or I dont give away too much personal information, because sometimes I don't know what is too personal or not. And then I post them to my blog.
I'm not sure why I am having so many meltdowns lately, I think it is likely all the changes with Nate being sick and some changes in my medications, plus my seizures and not always knowing what is going on.
I noticed the days we put exactly what we were doing and where we were going on my schedule in my Evie and we didn't change from that I was a lot calmer and had an easier time because I knew what was going on. I hate not knowing what is happening.