I let myself be teased (and I tease myself!)

It's been a long time since I have written anything, but I suppose the mantra of "if you don't have anything interesting to say - then don't say anything" applies. 

But sometimes in my life I do have something that I consider interesting to say, but I still can't get the words out. I can make a lot of noise or jump around in frustration, but the words still won't happen. 

This is living with aphasia. 

I am still young, 21 years old and nobody looks at me expecting me to have a diagnosed disability. I hide my hemiparesis quite well, to those who are not trained to see it but the aphasia can be impossible to hide. As a result, I live with people teasing me. 

People might read this and feel sorry for me. Thats not my intention. I live in Australia - a culture of friendly jabs and pokes. People cannot be teasing with malicious intent when they are unaware of what they are doing, so I prefer to take wisdom from Elsa and "let it go". There was a key example of this at Charmaine's twentieth birthday. 

I had a really nice time at Charmaine's birthday. It was so nice to spend time with her, her family and friends. I was especially excited to see her sister Sam, who I don't see NEARLY enough and of course, the latest excitement, Sam's boyfriend who I had not yet met!

As soon as I met him, I liked him. Instantly. He was different from other boys she has been with in the past, but for the best reasons. I was very excited. I turned to Sam and in my excitement I tried to tell her what I though. 

"I - I - I - I" I said, struggling to get my next word out - a mix of excitement and aphasia. 

Sam was wonderful, as she knows almost better than anyone about my struggle and waited until I could find the word "approve" and tell her how much I approved of her boyfriend. 

But in the same night, there was good-natured teasing that came from her boyfriend. Having taken a liking to Sam's boyfriend, I was chatting animatedly to him when I lost my words. 

"Um, um" I said

"Yes, use your words!" He laughed playfully

There was no malice intended. How can someone be malicious without knowing what their words mean? How could he have possibly known? In the middle of the party, I wasn't about to educate him on aphasia and make him feel uncomfortable or awkward. You have to laugh at yourself sometimes. Otherwise, it'd be a never-ending pit of frustration. There is a time and a place for education and advocacy. That was not it. 

I make no excuses for myself. I do not allow aphasia to control anything for me. Often, I will lose my words and be silent for a bit and end up yelling out "UGH ENGLISH!" And then move on. I like to laugh at myself. We all should. My disability is a part of me, so yes I laugh at that too. I am not bitter or broken. 

In fact, I am achieving great things....

A Possibly Life Changing App for Many: Talkitt

I am often busy and therefore blogging is one of those things that get put on the to-do list, much like vacuuming and mopping, and keep getting bumped down for other things - like coffee with friends or getting my hair cut. Yes, side note - for those who don't know, I finally cut off my long locks!

So. that has happened.

But today, as I sit at uni, snacking on nacho cheese flavoured popcorn and scrolling through Facebook I have come across a very interesting and exciting looking app called the Talkitt.

Essentially, the Talkitt takes speech that is seemingly not understandable - from ANY language - and translates it so that it is comprehensible.

Source

This. Blows. My. MIND.

I am SO keen to see if it works - the video is fairly convincing. I have no idea how it works, but I want to learn. I am the ultimate AAC nerd, yes. But, I am just thinking of my friends who it could help! I have friends who are brighter than their bodies, but I cannot understand what they're saying. Who knows.... maybe this app could revolutionize their lives? Caleigh, over at Caleigh's Corner is quite vocal and her parents can hear verbal language from her at times. Max, over at Love That Max is understood readily at home but imagine how this could be in the community for him? Sophie, at The Butterfly Effect? I don't know how vocal she is, but who knows? Who knows what this app could do? I am keen to see what this app can do. Here is a sneak peek of what it does.

If you are so inclined, there is a campaign going for funding for the app here. I supported it, and if any of my friends are looking to give me a charity gift for my 21st birthday - here is where you should donate!

To the makers of Talkitt, if you are looking for someone to fan-girl all over you - drop me a line. I would be more than happy to fill that position.

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Source

Dear Internet: I am an Idiot...yet again

Some days suck. There is no need to put it any other way. Of course, I always try and find the good in all of the days but you are still allowed to say: overall, that day sucked.

Today is one of those days. 

Even as I try type this, my beautiful boxer dog is behaving as an inquisitive toddler and won't let her snout be out of anything except for of course those things she is allowed to have. 

Some of you may have read my recent post about my aunt being in palliative care. Thank you all so much for your support. She is keeping on, her spirits seem bright and my mother has made sure she has about 14 different sets of pyjamas complete with matching bed socks. 

I think that is getting me down a bit today, but it's not the only thing. There is a bit of this stuff still lingering, and superficial though it may seem it is having an effect on me still. The daily stresses of uni and work seem to be piling on and today I was feeling like this:

Except my figure isn't early that good.
Picture Source

But I am not an idiot for feeling like that and I do not need to apologize, I know that much. 

My reasons for being an idiot are similar to the first time, except this time I have been taking my meds like an angel child. 

This doesn't really help if you're not taking the right meds. 

Last time I saw my neurologist, I got a script for a higher level dose of medication. Unwilling to up my medication yet, I was taking one of the higher dose once a day instead of my usual lower dose twice a day. 

It really sort of sucks when you mix up the bottles and start taking the low dose once a day...

Dear Internet: I told you I am an idiot. 

The effects of the lower meds are starting to show. I couldn't make it through uni today. The lack of function of my left side combined with my general feelings of crap, really meant today was not sunshine filled. 

Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture. I even have had moments of aphasia when I couldn't think of the English word for wash cloth but I could get the Afrikaans one out (shame nobody in the house spoke Afrikaans).

So, now it's time to reset. It's not an easy task. It's exhausting. I am already exhausted and I feel like the world doesn't understand there is only 24 hours in a day and 7 days in a week (does anyone else feel that way?) but we will get there.

It's okay to need to push reset. We do it with our electronics enough, and it is okay and necessary to do it with ourselves.

I am so grateful for everyone's support - near, far and cyber.

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AAC: Pogo Boards, A Review

Lately I have made the jump to a new AAC (Augmentative and Alternative Communication speech device). Although I do not have to use my AAC to get through most days, when I do need it I definitely need one that works effectively.

It is easy to get frustrated with an AAC. When it is too complicated to use or if it does not have that things you wish to say. 

I have used several AACs. For my own personal use, I have always used AAC apps for the iPad or iPhone. One that I have used for a long period now is "Pogo Boards".

Pogo Boards was a great AAC for me. I was very fond of it, or "her". I affectionately refer to the robotic voice as "LucyPogo". There are many great parts about LucyPogo...

Some of the positives include...

It is fully customizable. You can adjust everything on the Pogo Boards app. All the grids, multiple different voices, different languages and all that. You can adjust the size, the speaking rate, the amount of buttons on the grid...

You can share the boards with friends and the world very easily by saving the folders to global folders. This can be a very useful feature.

You can use the app on multiple devices. With my subscription, I could log into 4 devices at one time. I only ever logged into my iPhone and iPad.

I love any device which uses Text-to-Speech features.Anything where speech doesn't have to be recorded is a good app in my book.

Unlike Proloquo2Go, you have the ability to display a different message from that which is being spoken This was useful particularly with pronunciation.

PogoBoards use SymbolStix and have thousands of icons available.

There are many boards that you can either start with as a basis or use as fully functional boards. Or you can go again by yourself from scratch...

The important messages best friends need to say to each other... the app would never capitalize the L in Luke for some reason...

Pogo Boards can be used for other devices not just for iPad and iPhone. You can also print out the boards you make and use it as a low-tech devices.

The staff are really friendly and quite prompt with their replies. They are also very helpful with providing you with other resources.

It's not a perfect system. If it was, I would probably still be using it. I really do like it. But I also have some problems with it...

You can only edit Pogo boards from your computer. You cannot edit it from your speech device.

It is subscription based. This was a big issue for me. The subscription is not much really, and you can pay monthly, yearly, every two years or every three years. I don't have much money. I seriously don't, I couldn't afford a yearly subscription so I had to go with a monthly subscription. Although it wasn't a lot, it just kept adding up for me and I had to say no.

It is a bit faulty. Sometimes, the system would not let me log into my iPad or iPhone. It would say I had "exceeded my amount of maximum log ins", which wasn't true. It was an easy issue to fix, with a quick email to the the staff. But it was a pain nonetheless.

My home page (an old copy from last year) as it appeared on my iPhone

My Core Page for my iPad

A copy of my "People" page from my iPad

My final thoughts on Pogo Boards? If you are an educator, this is a really good system. The more people you have using the system, the cheaper it gets. It is so customizable and I really set mine up for me. Like all AACs, it took a while to set up and I never perfected it. Unfortunately, the drawbacks of this system for me meant it was time to try something new. More on that soon...

Note: Even as I looked through my photos, I didn't have photos of my latest most customized version. For example my iPad page of people normally has the three chihuahuas from Charmaine's house on it. Because, you know... priorities...

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Charmaine Wants Tea, Please

The other night, I was over at Charmaine’s house. For those who don’t know who Charmaine is, I highly recommend you read this post before you continue. Don’t worry, I’ll wait for you until you get back...

Excellent, now that you’re all caught up we can continue.

The other night, I was over at Charmaine’s house. Her mum and her dad were there too, oh and for anyone who is wondering the chihuahua puppies have been born! 

That is one of the puppies in my hand. For a frame of reference, I can pick up the mama dog easily with one hand.

Sam, Charmaine’s oldest sister and Maria, one of the “acquired German daughters” (Charmaine’s live-in carer and OT for the year) had gone out for the night. It was quite pleasant a night. The four of us were relaxing with the television on. Dad was very tired after a long day at work, Mama was working on the computer, and my mind was elsewhere thinking about my German exam at university the next day while mindlessly stroking one of the dogs.

Then something very important happened.

I don’t even know how this happened. Charmaine and I weren't actively practicing any sign language or doing speech therapy. She wanted something, I could tell that much. She was asking her dad for a mobile phone and I knew that's what she meant, but given what she was signing, she could've been asking to phone someone.  So I turned to her and asked, using speech and sign: “Do you want one?”

She picked up on my signs and started to respond with signing for “I want”

But… suddenly we heard from her, clearly speaking: “I want”.

What was that?

Charmaine has a limited verbal vocabulary. She understands the world around her very well, and also knows what she would like to say very well but is afflicted with aphasia and apraxia of speech. Some of her words, with therapy and practice include: Charmaine, Mama, Papa, Sam, Maria, Lala (what she called her previous carer: to be fair, Claudia is a lot of phonemes), Tea, Fish, Shower, Thank You, Sorry, Oops! and a few others including my name. She also can say “How are you?” or if asked how she is she can respond with, “Fine, how are you?”. She also can say “I love you”. Her two most recent words are: why and awesome.

But suddenly, while signing, the speaking just tumbled out “I want”.

We were all silent and then Dad said: “Say it again, Charmaine”. There was almost a sense of disbelief. You could feel the anticipation hanging in the atmosphere.

“I want”

Well there was no disbelief then.
The cheers were immense; the celebration was huge.

“Charmaine say, “I want tea please” her Dad prompted

Without hesitation and clearly, Charmaine said it.
We filmed it. There was squealing. It feels like a piece of the puzzle has been put in and it has fit smoothly.
I messaged my own mother with the good news, my teacher from special school and my four closest friends. All of them appreciated this immense achievement and sent back messages ranging from "that's fantastic, Charmaine!" to "f***ing PHENOMENAL!!!!!"

Later that night, Charmaine actually wanted tea and she simply said as she always does “tea”, but after a quick reminder to say a sentence it happened again:

“I want tea, please”

It is a thrill to hear her speak.

And then she looked at me and said my name, and with a little bit of help said "want tea please", and I am never going to say no to tea!

That night, she could’ve had twenty cups of tea and nobody would’ve objected.

We talk about inchstones and we talk about milestones. This was a milestone.

Please, grab some tea and celebrate with Charmaine and me! Celebrate your own, your friend's or your children's milestones and inchstones with us! 

Charmaine and She Types Things: Charmaine, very proud of herself and Me, very, very proud of her.

"It's a miracle I look this good after everything I have been through..."

I have been trying to write this post for a while. I know it won't be the only post on this topic, but I still never knew what to write. Now, as I sit in my university common room - having left my books at home like a fool and considering that 9:30am is too early for lunch - I think I have the words figured out.

Like most people in this world, I love going to my best friends house. There are many great things at my best friends house. I have my "second family", "other mother", my favourite kind of tea, multiple best friends, all the animals I could ever want (including, any day now, chihuahua puppies) and there is always Pepsi Max. 

And whenever I go into the bathroom of this wonderful house, I see a sign that says: "It's a miracle I look this good after everything I have been through".

And do you know what? This is completely true. Dad, Mum, oldest daughter, extra German daughters and their youngest daughter, Charmaine, are all hot to trot.

....it's a miracle they all look this good after everything they have been through. 

Dear internet: I would like to introduce you to one of my best friends, Charmaine.

I honestly am not sure where to begin to describe Charmaine. The wise words of Julie Andrews say "let's start at the very beginning; a very good place to start". To be honest, I'm not even sure where that is. 

Charmaine is one of the most loving and empathetic people I know. She has a very special way of connecting with people and the world around her. I think it is a gift. She's hilarious, crazy and fun. She can be damn cheeky. In many ways she's just like me in the way that she is a young woman, we live in the same area , and we both have dreams and goals in our lives. Charmaine has a disability, too - in fact, I would say she has more than one.

Charmaine was in a traumatic car accident a little over two years ago. She was not supposed to her survive, at all. When she did survive, she was not supposed to walk, talk, understand language, recognize people or be able to swallow again. 

Charmaine has exceeded these expectations, a thousandfold. Through the love and support of her family, friends and medical team; damn hard work; and things that simply cannot be explained by medical science, which we attribute to the grace of God. Charmaine eats. Charmaine is learning to walk again, she can walk with assistance or with a walker. Charmaine understands the world around her and can respond effectively through speech or another method. Charmaine knows who others are in her life -- and she loves them. Charmaine is still always improving.

I love this entire family beyond what I can say. Though I am normally cynical and a harsh realist, I do soften for a moment and believe that special friendships like this are when one soul joins across two bodies. When I think of Charmaine, it has occurred to me that her right side does not work effectively; and my left side is deficient. Together, we work as one. Some people come into our lives for a reason and some friendships are simply meant to be. I am lucky to be accepted into such a damn good looking family. I am thankful that they take me as I am, disability and all. That is a level of acceptance that I'm still not used to, and I appreciate so much.

Recently, I wrote that "Disability is not normal" and as soon as I wrote it, I wasn't sure I really thought it was true. I have a disability. Charmaine has a disability. Yet, I feel like we are both normal.

We are both more than our disability, absolutely. I am definitely all for person-focused and person-first language and thinking. But our disability is an intrinsic part of us - Charmaine's is more than mine, and that's just the truth of it. We cannot go through a day in our life without our disability being a part of it.

 But, Charmaine is normal to me. When I am with her, I feel normal.

We are friends. That is what matters. What the rest of society thinks of our disability becomes irrelevant - in that house, in that family - we are normal. Disability is accepted so much that we are given permission to be normal. Even when we are out in public together, I don't notice people staring until I consciously look. Disability isn't normal - I stand by that. But people are. And sometimes disability can be so accepted that whether it is normal or not: it doesn't matter. When it is accepted, it is no longer an issue. It mightn't be normal, but it can be okay.

Charmaine makes me feel normal, and her sister Sam once said to me that I make Charmaine feel normal. We are friends, there are no labels.

And we are damn good looking, too.

Charmaine - I love you.

Fail, Fail, Win: Beginning to Accept Disability (complete with stickers!)

Some days, I am not good at being a grown up. This is shocking, I realize. Today seems to be one of those days.

As the Australian school year starts back, many of my jobs  swing back into full steam and this was the case today. I think the fail began when I forgot to wear my butterfly hair clips. I definitely failed worse when I had already started driving to work and realized I had forgotten the classroom keys. Then - there was the ultimate moment of failure. 

Dear internet, nobody can be an effective educator unless they employ the use of stickers. 

I had, of course, left my stickers at home. 

Fail. 

I considered for a brief moment explaining to the five year olds that they couldn't get stickers this week, but I would have them next week. The image was not peaceful. I might as well have said I killed the Easter bunny. So, I did the grown-up thing, and stopped at the overpriced news stand and bought some sheets of stickers. 

These suckers cost me almost 15 dollars. 

You've done something like this before. Don't lie to me. Particularly if you are a parent, you have done something like this before and sort of kicked yourself for not being more organized. Maybe you have run out of nappies/diapers and had to pay a million dollars and your left arm for ones at the all-night pharmacy. Maybe you have had to buy formula, like Pediasure, because you have left yours at home and you can just see it; in your mind's eye -  sitting in bulk - at home, and there is nothing you can do about it. Or maybe, just maybe, you've even forked out the money to go to the cinema and you are paying for snacks at the snack bar - just to see your kids happy. (Or to shut them up and stop them whining). (Or because you actually really wanted the popcorn). 

We do things like this for lots of reasons. Occasionally we fail at life and being a grown up. Sometimes we fail for good reasons. Today? I think I was distracted. Recently, I wrote "Dear Internet - I am an Idiot", and (excuse my German) but things have really been scheisse lately. That's the truth of it - there's no way to make it rainbow and bubbly.  There's no need to sugar coat it because what is the point in being dishonest? It has sucked. But, I have learned something I knew all along.

People do want to help you with your load. Think about this: when you see someone struggling with a heavy bag, or carrying lots of groceries, or struggling to push the pram while carrying the nappy bag, the other toddler and all the other paraphanelia - do you want to sit there and just watch? Or do you want to help? Even if you are unable to help, do you not want to do something to help?
 

(Please tell me the answer is you want to help...else we may need to have some more chats... I do have a background in psychology after all...)
 

Once people agree to share the load, very rarely do they pass you over the whole load. More often, we just give over something small - the lightest bag. It's like the grocery bag with the bread and the tissues in it. 

And it's a start. Maybe it just makes your load more manageable - even if your load is heavy, it might be less awkward; more balanced. Soon, they may insist on taking another bag. Or someone might even push the child's pram. Sometimes, when you are tired, people are sneaky - they take some of the load... and you don't even realize they have done it. It's okay for some others to even take the whole load for a little while - between even just a few people the load is so much more lighter and more manageable. Rome wasn't built in a day and it was not built by one single person.
 

So, now, I am feeling better. Genuinely and truthfully, I am feeling better than when I wrote the other week. Because do you know what I have realized? There is a lot that is going on right now that really sucks.

I have also realized something else.

I have a disabling illness.

And -

It's not my fault.

And -

I am also very able.

And -

I am really, really loved.

And for that: I am winning.

Sometimes you need to re-learn things you have known all along.

So I will reward myself. Not all stickers are for 5 year olds.

 

These ones? These are all mine, baby. If loving Scooby-Doo stickers counts as failing as a grown up, then I'm not sure why you would want to be winning.

 

Tell me: go on, tell me, you know you want to. When have you had a "grown up" fail?

 

Never forget to share the load.