Summer 2017

Hi Everyone,

I am so excited because we are going on holidays to the beach. I have been having swimming lessons.

My teacher says, “Good job, Edna.”

I can float on my back and put my head under the water.             I blow bubbles under the water and then I go Phrrrrt with the water and my teacher says, “Edna, please do not spit the water.” It makes me laugh and laugh and laugh. I love swimming lessons.

At the beach I will put my back pack floaties on and be very careful. My swimming teacher told me that a wave might push me over so I have to be extra careful. I always have to have an adult with me at the beach.

I love playing in the sand and making sandcastles. When I finish I jump on them and sometimes mum and dad let me bury them in the sand. I leave their heads sticking out so they can breathe.

I hope you have fun in summer.

Love from Edna

Edna’s Diary update Spring 2017

It's Edna here. Spring has sprung.

This year I am really going to try and get out on my bike and learn to ride it.

It's very hard trying to balance on a bike and it might take me a little bit longer but

I know I can do it so I'm just going to keep trying.

There's a bike path along the beach and I want to ride on that so I can ride to the ice cream van and get myself an ice cream.

I have to wear my hat so my nose doesn't get sunburnt. It's already pink  I don't want it to be red or I might look like Rudolph the red nose reindeer.

Love from Edna xox

Autumn 2018

Hello to all my friends,

The big question on everyone’s lips is, “Edna, how’s school going?” That’s what everybody asks me when they see me. They tell me how much I have grown. I hope they know I am also very clever and have moved up into a new class.

Anyway, how is school going for you? I was happy to go back and get all my new pencils and books. This year I am going to try really hard not to eat the glue stick but I do like to chew on things. Mum bought me some toy things, ‘specially’ to chew on. They have been great so far and I am trying not to chew other things, like my shirt.

And guess what? I also got a new lunch box and drink bottle. I like to put my drink bottle in the freezer before I go to bed so it is ice in the morning. It stays cold for a long time. Sometimes I rush out the door and forget to take it to school. Whoops!

After school I have been doing some dancing lessons because when I grow up I want to be a ballet dancer. I have drawn a picture of what I will look like when I am famous.

Bye for now

Edna's Diary Winter 2018

Well guess what? I went out to the letter box and there was a parcel. Yep a parcel for Edna. For me. I was so excited and I ripped the plastic bag open.

Inside was another parcel wrapped in red paper.

I wondered if we were playing ‘Pass the Parcel!’ I ripped off the red paper and found a beautiful white T shirt with a

picture of me on the front.

Artwork by Jocelyn Palacios

There was also a little tattoo

with all our ACC groups in the world and a black cap. My friend Bruce took a photo of me in my new things. I look awesome. Can you see me looking awesome?

July 2 is International Corpus Callosum Awareness Day. Do you know why? I’ll tell you. July 2 is the middle day of the year and the corpus callosum is in the middle of the brain.

Cool, hey? I am going to send this photo to info@ausdocc.org.au so I am in the slide show for 2018. I hope you do too.

Adios Amigos.

Edna’s Diary Update Spring 2018

Did you know that I went to America? I went with my mum to the NODCC conference so I could hang out with other kids who had ACC. It was so fun. I made lots of new friends.

We also went to Disneyland. I had a ride on the train but when I got into the very dark and very long tunnel there were dinosaurs and I really freaked out. Mum had to say, “Just take some deep breaths Edna. Just breathe. It’s ok. They’re not real.” They looked pretty real to me and breathing wasn’t my biggest problem. Getting off that train was. Quickly. We got off at the next station anyway. Just in case. I DON’T like dinosaurs.

I saw Mickey Mouse and Scooby Doo. They were so big, so I might have been a little bit scared of them too and I might have hidden behind my mum. Never mind…

My great huge ice-cream was the best and I did get some awesome Minnie Mouse ears and a Bart Simpson T shirt. Did I mention I don’t like dinosaurs?

Cowabunga dude!

Autumn 2019

Hello.

It is I, Edna the brave and fearless.

Um, really, I think I might be just a little bit scared and a little bit excited all at the same time. Does that happen to you?

Why?

I am going to my first ever AusDoCC conference where I will meet other kids with ACC. It will be awesome. We are going to do lots of fun things and there is a high rope swingy thingy that I might have a turn on if I get really brave. I hope I can toast marshmallows on the end of a stick. I love doing that.

Mum is happy too because she is going to hang out with all the other mums and talk about ACC stuff. She doesn’t get to do that very much.

I will tell you all about my Kids Club conference adventures in the next newsletter. I hope I see you there.

Love from your friend Edna (the fearless)

Edna’s Diary update Winter 2019

Me and the big big awesome camp. Camp was just the bestest time. This is what we did.

We went fast as the wind on the flying fox.

We went high as the sky on the climbing frame.

We made noise like thunder on the African drums.

We took funny pictures in the Photo Booth. We made lots of new best friends forever.

And…

I slept on the TOP bunk for the first time ever. That was awesome.

I can’t wait until next time.

Luv Edna xx

Edna’s Diary Update

Guess what? Guess what?

I got a big surprise for Christmas. I got a pet worm. I found it in the compost.

Well, that wasn’t really my proper Christmas present. I got a game of Bingo, a bike and a beach towel but Mr Wormy McWormtail was my very, very favourite. He went everywhere

with me and I loved him so much that he even slept with me.

Sometimes I put him on my dinner plate. Mum put her grumpy face on and her ‘I mean business voice,’ and said, “Edna, take THAT THING outside.” I tried to cover Wormy’s ears so didn’t hear but I couldn’t find them.

Then we played a trick on Mum. I put him in the lettuce in  her salad and when she found him she screamed. I got sent to my room.

I haven’t seen Wormy McWormatail for a few days.

Words of wisdom from Edna Autumn 2020

Hello, It is I, Edna the champion shoelace tie-er upperer.

I am very happy. Today I learnt how to tie my shoelaces. I have been trying to do this for years and years but it was so hard for me. Lots of people tried to show me but they kept talking about the shoelaces being bunnies’ ears and going down a rabbit hole. I couldn’t see any bunnies.

My big cousin Rufus showed me 100 trillion times and I practised and practised and now I can do it. Mummy was so proud of me. I was so proud of myself.

Then there were bunnies. Chocolate bunnies. Mum gave me one as a reward. Yummo.

Can you tie your shoelaces? Keep practising and never give up!

Toodles. Xx from Edna

EDNA’S UPDATE Winter 2020

July 2 was very special day for me.

It was all about me and my corpus callosum that isn’t there.

I am very excited because I am a legend in my own lunchbox. AusDoCC has made a really, really, big Edna. I had to go and have a photo shoot and do lots of modelling. I got very tired.

I am showing you some photos of how they make a big Edna and a photo of the little Edna that is in the AusDoCC shop. I feel like a movie star because I have my own merch.

Mum says, “Don’t get a big head about this Edna or you won’t fit through the door.“ I looked very hard at the photos of Big Edna and I said, “Mum, I think it’s a little bit late.“

I am so excited for you to meet Big Edna, the super cool gal with no corpus callosum (and maybe a big head!)

Edna & the Mystery Visitor

Well… I'm getting very, very excited because Mum and Dad told me we have a special mystery visitor coming to stay.

Right now she can't be coming to stay because we are being very careful not to catch the coronavirus. I can wash my hands for 20 seconds and I sing, “Happy birthday to me,” even though it is not my birthday. I can sing it two times in 20 seconds.

Sometimes I go and make my hands dirty again so that I can sing it and wash them. I don't want anyone to forget my birthday so that is my little reminder to everyone. Cool huh? You should try it.

My birthday is on July 2. I hope they don’t forget. I wonder who the mystery visitor will be?

Edna Does ISO Home Schooling.

Well everybody, how about this ISO home schooling deal?

I am so looking forward to going back to school to see my real teacher. My mum is trying hard but she’s no teacher. Trust me on that one. She doesn’t even remember how to do joined up writing and she’s forgotten her times tables. Really Mum? I am very fast now. My favourite is the 8 times tables. Six eights? Who got it?

And what about Zoom? I call it Zoom Zoom Zoom. Everybody is Zooming all over the whole world. We have been watching people singing together and we tried that with our class. We all sang really loud. Like really, really loud. Somehow it didn’t quite sound the same. My dad came in and said, “Edna, are you jumping on the dog’s tail?” Daaaaad!

We hope this corona virus gets knocked out soon or I will be jumping on its tail. I will be jumping on its head. Go away corona virus.

Be safe kids,

Edna

Autumn 2021

Hi AusDoCCers,
Well, summer holidays have finished and we have all gone back to school. I hope the Covid doesn’t close our schools again. It was pretty fun to be back at school and we have some new kids and new teachers. So many peoples. So many words. So many new things.
Sometimes I go to speech therapy because I have lots of things in my head but they won’t come out my mouth. Sometimes people say things to me and it gets all jumbled. If they say too many things all at the same time it’s like a big bowl of spaghetti in my head.
I like to just listen to one thing at a time and work out what it means. Then I work out my answer. I have to use my hands a lot because sometimes the words can’t come out my mouth.

I am learning to use an iPad with lots of pictures to tell people what I want.
I love my iPad. Do you have an iPad? iPads are cool and so is my speech therapist. She says, “Good job, Edna,” and gives me a high five.
Love from Edna xx