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....

Hand writing - a dying art.

For those of you who read my blog regularly, you will know that I have hemiparesis on my left side. In the past 10 months, I have worked really hard at building my strength back into my left side and compensating with my right side so that it is not noticeable.

In so many ways now, it is not noticeable. My gross motor skills and strength are excellent. I am possibly the best in my job (and most humble!) at manual handling skills - and by manual handling, I am referring to human beings. Some of the boys are a bit better than me, but for quite a short girl with a slightly weird walk - I am pretty good and I own those skills. I always passed driving requirements, medically speaking.

With my fine motor skills, I am still working on them. I think I am dropping things less than I did. My arm prefers to be bent and my wrist dropped. This is still true, but it is less so than it was. I am working on putting on make up. I am doing this for two reasons.
1) Fine Motor Skills: it's an excellent way to practice my fine motor skills - and just to clarify, I am naturally left handed
2) Self-Esteem. I am not saying you need make up to look and feel good, but in my case I definitely had gotten into a bit of a rut with taking care of myself and this is an exercise that is helping - slowly but surely.

I am also doing activities like straightening my hair - but I am still doing that right handed for the moment, or getting help with them. Slowly but surely.

I had my 21st birthday the other week, and I had a party. It was fun - a clash of different parts of my life, and it was rather a strange and honouring experience. For those who saw on Facebook, I ended up wearing the sparkly silver flats over the jelly shoes - it was a good compromise that my mum and I came to.

Three Best Friends 

"Other Family" - Charmaine's Family. I had done my own make up but had needed help with my hair.

And I was showered with very generous gifts! It was overwhelming and now I am writing thank you notes to everyone for their kindness and for their attendance.

Secret fact about me: I actually have beautiful hand-writing. It isn't well known. Grandmama and Mama keep looking at shock at how neat my hand-writing is. It is taking me a very, very long time to do. It is very difficult to get them to be so neat. I can only two notes before having to take a break. I find it does not only strain my left hand, but my right hand clenches as well.

But - it's such a sense of achievement for me. I can type a blog post in the space of five minutes, but these 20 or so notes will probably take me a week.

And I am going to do it! Just watch me!

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

My Love for Light Up Sneakers

The other day my life changed forever (I don't think I am being overly dramatic). I discovered happiness I never knew possible (Still not overly dramatic). I was lying in bed, although it was not yet bed time. I was simply not feeling well and took the chance to have a rest, when my Mum came home. She came into my room to say hello and show me what she had bought. I never guessed she had bought something for me.

Out of a box came these gorgeous, sparkly, velcro-tabbed, purple, pink, blue and silver sneakers. I could not say a word. I only gasped and smiled, my love of these shoes knew no boundaries.
Suddenly, Mum turned off my light in my room and threw the shoes on my bed. When they landed, they flashed and lit up. I squealed and squealed. It was like Christmas, Easter and my birthday all in one.

After squealing, squeaking and thanking Mum profusely, I proceeded to text almost everyone I knew to tell them the good news. My conversation with Luke went like this...

She Types Things: LUKE!!! I GOT SNEAKERS AND THEY LIGHT UP AND THEY'RE SPARKLY AND ARE VELCRO TABBED!

Luke: Haha, that's awesome. That's like 5 year old you dream come true.

She Types Things: No. It's more like 20 year old me dream come true.

And it is true. It is a dream come true. I want to wear the shoes to work (I do sometimes, depending on the client), I want to wear them on dates (haha - what dates), and I want to wear them to my 21st birthday (Mum's disapproving look means I probably won't).

I love things like that. I love little things that make me happy. True enough, the other day I went to the shops just to buy some red cordial (I also bought a Scooby Doo toy for $5 because it was just too good not to). I have my nails painted pink. I like to laugh.

Life is too short to be grown up all the time, but that is not the only reason I love my new shoes. I think they should be a physiotherapy tool.

The sneakers light up when they have enough weight on them. They light up on most steps, but if my weight is in the wrong place then it won't. The other thing about it is that it makes me look at where I am placing my weight.

When my sneakers only light up on the right side, I know my centre of gravity is too far to the my right. This isn't uncommon for me - I don't often realize I am doing it. But now, thanks to the most awesome sneakers in the world - I do. I am able to fix my walking and bear my weight more evenly.

Therapy is most effective when it is in the form of play.... or fabulous light up sneakers.

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Disability Perks

Disability perks is a phrase that I really stole from John Green, from "The Fault in Our Stars". He talks about cancer perks in it - about the things that people give to children and young people because they have cancer. It's an interesting concept, disability perks - especially when it comes to children.

The other day I went with one of my jobs to Seaworld, with 8 children and 7 workers. Two days later, one worker and I went with two children. It was exhausting. It was great.
It certainly wasn't the place for all of our kids - one of them really had a bad day. He didn't enjoy himself. Others weren't too fussed on Seaworld, and some of them absolutely loved it.

When I talk about disability perks - I am not talking about equal rights. I am not talking about accessible parking or accessible bathrooms. These are not perks - this is equality and basic rights. I'm talking about those little things extra.

I am talking about the people who give the children an extra bag of sweets, because they're in a wheelchair.

I am talking about the people who stop the characters in dress up to take photos with our kids, and shoo away all the "able-bodied" children.

I am talking about the fact that the children with the wheelchairs got the pathways parted for them like the red sea (but not those without the visible disabilities.)

Some people think those perks are sweet and kind. Disability perks kind of get under my skin a bit. I think it is just another marker of society not knowing how to treat people with disabilities and not simply seeing them as children.

But, am I going to actually say no to them?

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Disability Does Not Discriminate

Discrimination and Disability are two words that we often hear in the same sentence. Those words are great mates and seem to go hand-in-hand with each other, like salt and pepper or bacon and eggs.

We are used to it at schools, in the workplaces, and even society in general. Places without wheelchair access or disabled toilets are a wonderful example. There is no need to make room for the seemingly "few" who need it, compared to all of "normal people". Mama Lewis can tell you a story or two about discrimination: from shopping trolleys to child care.

Because having a physical disability is also about competing in death-defying stunts to get places.
Picture

Discrimination is as ugly as prejudice, and seems to happen simply because someone is different from you and what you expect all people to be. It can be for many reasons: race, religion, sexuality, age, gender or, yes, disability.

But the weird thing is how much society discriminates against disability, when disability does not discriminate.

I am not talking about people with disabilities. They can surely discriminate, because people can suck. Having a disability is no exception to this, as I talked about in my previous post. But disability itself does not discriminate.

I have heard the expression before, but never fully understood it until recently. I work with a lot of different people who have different disabilities. Of my 5 regular clients, only one has Australian heritage. The rest have heritage from all over the world: Africa, Asia, Europe...

My clients range from children to fully-grown adults. I have male and female clients. I have clients of all different religions and faiths.

Disability does not discriminate. Disability cannot discriminate.

Nobody chooses to have a disability. Disability does not go around and choose people. There are many reasons why people have disabilities, but neither of those are true.

Why do we,as a society, discriminate against disability, when disability is discriminates against nobody?

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My Special Students are not Sweethearts

I work with a lot of different people in disability services, so in turn I see a lot of different disabilities. I am interested in all of my work really, and try not to limit myself. But I never forget where it started, and continues to this day, with one day a week at Special School.

At Special School, in my particular classroom, I have students who have severe physical impairments but who also have brains much brighter than their bodies. I sometimes classify this as the cruelest turns of fate, to be in a body and you want it to work but you know it doesn't and it won't. It is different from Autism, which I heard beautifully put as 'seeing life through a different window, not understanding what you see, and nobody understands it either' (a generalization, but holds true for many people I know). It is different from intellectual impairment.

I know my students well. They are getting older, so I like to refer to them as my friends. They are all clever - much cleverer than people give them credit for. They can be lovely, but not always. They are teenagers and I remember my moodiness as a teenager all too well.

What I cannot stand is upon a minute of meeting them, someone who says "Oh bless them, what sweethearts!"

One of my students is, I'll give you that much. She is a sweetie, and she is often happy, and she is quick to smile and laugh. She is sweet. I'll even let you say she is a sweetheart.

But one of my other students that I can think of? Sweetheart is not the first word I would think to describe her. Bright, vivacious and bitter. I know her. She is currently limited as we unlock a key for an effective communication device, and this can make her angry. Would you call any other high-school aged student a "sweetheart" moments after meeting them?

One day, a friend of mine who is studying to be a social worker wrote this on Facebook

"It never ceases to amaze me how much people with disabilities despite all the discrimination they face on a daily basis are still some of the kindest and friendliest people I know."

That's coming from a social worker. A mass generalization on all people with disabilities.

I work with many different people. Guess what? I get bitten. I get spat on - purposefully, too. I am often covered with bodily fluids (nobody's fault). I get yelled at, by other carers. I try and stop self-injurious behaviours. I listen to a lot of squealing. I sometimes have to run a lot.

Sometimes I work with sweethearts. Sometimes I work with real cool cats. Sometimes I work with a mate or a buddy, and everything in between.

It's not glamorous. There is nothing romantic about this.

My Special Students are not Sweethearts, simply because they have a disability.
I've gotten it before too. I know my friend Emily from Words I Wheel By gets it too, as does her mum.

Any assumption about a person with a disability: that they will be sweethearts or not is a massive and unfair overgeneralization. We should be seeing a person before a disability. When we judge or assume that someone will be one way or another because of their disability, no matter what the disability, we are not being person-first.

And clearly, sometimes even social workers need a reminder on that.

The WHAT who invented the Upsee?

I am a huge fan of Leckey Products. It is one of my favourite companies for durable medical equipment (DME). I am a big fan of their standing frames. I am a massive supporter of the KidWalk, I think it is an exceptional product and just to clarify, I am not sponsored by Leckey. I also wouldn't recommend a Leckey product over one that would be more suited to a person's needs. But as it stands, I am a Leckey fan.

I became an even bigger supporter with the company Firefly, designed by Leckey. Firefly really hits the nail on the head for me because they create products designed to help involve children with disabilities in family life. It is all about inclusion.

When the GoTo Seat started making appearances on various blogs, I was in love. The idea of a lightweight, easy to pack seat for children who need assistance with posture is both mind-blowing and so obvious. It has been such a great invention for so many people.

Daniel using the GoTo Seat.

GoTo Seat

I was in love with the GoTo Seat and Firefly instantly, and when the Upsee started to make an appearance, I quickly grew interested. For a while there was hardly any information about it, just a small teaser. The teaser showed Debby Elnatan talking about her son, Rotem, who has cerebral palsy. She talked about how she wanted him to experience the sensation of walking and it briefly showed what she originally did - the crude (but excellent) design that turned into the Upsee as it is today.

Claire and Daniel Smyth; Louise and Bethany Watson; and Cameron and Charlotte Taylor using the Upsee

I waited online with a lot of my friends in this community, excited to see the reveal of the Upsee. It has now been produced, and it's excellent. The feedback has been largely very positive. I am a big fan. I have huge respect for Debby Elnatan.

So, imagine my shock when this photo started appearing:

What. The. Heck.

This photo hasn't just been shared and seen a few times: it has been viewed hundreds of thousands of times. I am furious. Credit to George Takei for correcting himself, but my fury still stands. This misinformation grates at me. All it took was a Google search and I found so many people who have been misinformed about who invented the Upsee, and also about Charlotte Taylor's disability.

Firstly, to Debby Elnatan. The woman who has made an incredible design, is getting ignored. Why? Is it because it's more emotional and adorable if a dad does this for his daughter? It is clearly better fodder for inspiration porn (another topic I could rant over).

There is only two ways I can see that this picture occurred...

1. Someone saw the photo of Cameron and Charlotte, briefly skimmed the article, threw together some assumptions, created this inaccurate picture and spread it like wildfire on the internet.

Or...

2. Someone created this picture, knowing full well that Debby is responsible for the creation but knew it would be soppier, mushier and more visually appealing with Daddy and Daughter, Cameron and Charlotte.

Cameron, Charlotte and the rest of the Taylor family are reportedly reaping the benefits of the Upsee and that makes me thrilled. She and her brother can play on the same level, and she can be part of family activities more readily. Charlotte, who is not paralyzed but has cerebral palsy, can experience the sensations of walking. This is what the Upsee was designed to do.

But, it wasn't designed by Cameron Taylor. It was designed by Debby Elnatan. Even in comments, when people read that it wasn't invented by him people say "so what? It's a great design". I get what they're saying, I do. But "so what?", "so give the person who created it the credit due her". Because, Ms Elnatan - well done. I am sorry you're not getting the credit you deserve. You have designed an exceptional product and you are changing the lives of so many children and family.

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Her Final Birthday

The other week, it was Auntie's birthday and it will be her last one. Short of a miracle, she will not see her next birthday.

We had an excellent day. She was quite bright that day, and there was a lot of laughter. Uncle P, her and my mum's brother, was up from Sydney and he bought the entire family fish and chips. He even bought me a different meal because he remembered I don't like fish. Auntie ate some chips.

We were all there: Mum, Dad, Brother, Cousin, Uncles, Grandmama... in the afternoon a friend of ours with an accessible van brought Grandfather out to visit too. My auntie's goddaughter (who went to school with me but was a year above me) was there too, the first time she'd been at one of our family functions - she coped wonderfully. I have seen her a couple of times since as well, and other people who I know are very important to my Auntie. These are the people I will see at her funeral.

It almost feels like a dream now.

We had champagne and I tried to drink it in the spirit of it all, but I really couldn't. Uncle C was more than happy to take care of it for me. I think he also took care of Auntie's.

We spent way too much time talking about how it's so strange that we have the cutest pets in the world. We clearly just pick well.

We all spent a lot of money on her, and I would do it again in a heartbeat.

The evening was very difficult, and not all of my friends understood that. After being positive all day, I cried like a flash flood in the evening. Because we had just celebrated her last birthday, and I am so happy to say it had been excellent.

We got no respite because the next week was Mother's Day (respite came later), and it has always been a celebration for Auntie, Grandmama and my own mother. It's a team effort; raising me, Brother and Cousin. The celebration was at our house and it was a bit quieter than Auntie's birthday. She was also much, much sicker. She lay in her recliner for most of it and rested. But it was Mother's Day and we got to celebrate it together.

A Mother's Day Montage

There is a lot of lasts going on, but also some firsts. I knitted her a scarf the other day and it's the first time I have successfully completed a knitting project. I'm meeting some people for the first time (or the first time in a long time) and I can see why they are so important to my aunt.

There is sadness, there is crying. But there is this strange sense of peace. You can't spend your life being sad all the time, because it is not really living. It's a sad situation, but you cannot be sad all the time. Otherwise you will die too.

So today, Mum went to Meals on Wheels for the first time in months and she's going to see two friends for coffee. She'll go see Auntie in the afternoon. Grandmama had a fall last night so it is important that she goes to the doctor and I will take her, and I don't know when we will see Auntie. So Uncle C is taking care of her this morning. And that is okay, we can just take it a bit at a time - and dwell on life, not the death.

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Dear World, Thank You for the Respite

A lot has happened lately, and I haven't had the energy to blog about it. The days are long, and each is different and each is so similar. Palliative Care is a strange kind of in-between. A drawn out waiting room. There is some beautiful about it. I continue to hate it, on many levels, and on so many others I have grown used to it.

I see a lot of people who I don't normally see, and the thought crosses my mind: "These are the people I will see at her funeral". It's a strange sort of thought. In some ways a terribly dark thought, in some ways a very comforting thought. Her goddaughter is someone I have known from school, though she was not in my grade, and I have been able to talk to her and it has been a great comfort for me.

Auntie was discharged from hospital and is now under palliative care for another hospital, but as an outpatient which is great news.

We do some things that I'm sure psychologists would say are not healthy. Spend a lot of money on her. I don't care. Nobody can tell me otherwise. What I did learn thought was it's okay to have 24 hours away, and recently I had a 24 hour break to Sydney - about an hour plane ride away.

I saw my cousin who lives down there. We ate food. We drank. We went and saw Lion King at the the theatre. My friends and I sat at Starbucks and drank and read our books for a couple of hours.Forget the rest of the world. Pure Bliss.

It was a kind break the world gave me away from the explosion of stress the world has given me - good stress and bad stress. In the past week, I am now employed in three different places. I am so thrilled. Every single one of these employments are in the disability field - one of them is specifically in speech and communication, and is with Charmaine. These are all excellent things. I can't wait until I can tell you about them properly.

Uni continues to throw never-ending study at me, and in amongst all of that we've had my Auntie's final birthday, the final Mother's Day (both of which I will talk about next post) and never-ending issues with Grandfather...

And so, the world exploded with stress. Blogging became a distant dream.

But I was given 24 hours. 24 hours to breathe.

24 hours without guilt. 24 hours with sunshine. 24 hours with friends (who I am frequently neglecting).

Thank you for the respite world. Now I can return to it all. Discussions of how many milligrams of what medication Auntie has taken or should take are back. Cleaning the house is back. The days that are so similar, yet so different are back.

But I got a break, and it was fantastic.

Give yourself a break sometime soon, too.

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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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Palliative Care is Beautiful and I Hate It

My aunt is dying. I have  written that sentence out many times before and I have even said it a few times, with a dull feeling of numb acceptance.

Sometimes I don't know why they have started a new treatment. The other day they started chemotherapy. Do they honestly think it will work? Really?

My aunt is dying.

 

Mum, Me, My Auntie - late 2012.

             

The room is beautiful. There is artwork on the wall and, short of a funeral, I have never seen so many flowers for a single person at one time. I signed to my mum, when my aunt was sleeping just now, "which ones do you like best?" But she replied "I don't know" because it doesn't really matter. They are all beautiful and I hate them all.

The room would've once been a 4 bed ward, back in the day. There is a large and not totally uncomfortable couch, two Regency chairs (think of special needs recliners), another recliner, other chairs - no shortage of space for visitors. My uncle stays here every night and the mattress, as far as I can see, doesn't look like your run of the mill back breaking hospital mattresses. It looks like it may actually fit him and his long legs.

An awkward family photo - my 19th birthday. (Uncle is taking the photo)

      

Nobody writes "get well soon" anymore. Nobody buys those sort of cards. They write that they are always thinking of her and they are sending all their love. Perhaps there are even people praying for her, I don't know.

I know she has had a good life, but it wasn't meant to be like this. Nobody knows what the future holds, but I can assure you this isn't good. She will not attend her son's or nephew's or niece's weddings. I doubt she will see her son or myself reach 21, my birthday is in 5 months time.  Our dogs will both out live her. Her elderly parents will likely outlive her. No grandchildren.

And I simply hate it.

She is so much more than my aunt. She shared the place of mother along with my own mother and maternal grandmother. I could not figure out why I was not one for the general Mothers Day dedications on Facebook, until I realized it didn't feel right until I included all three women. They are all significant in raising me.

We do selfies and gosh don't they look good! This is the photo I use for my Mother's Day dedications. It was taken on Christmas Day, 2011. My Aunt, Mum, Me, and my Grandmama.

My aunt is dying.

Palliative care is beautiful and somewhat serene. But no matter how many flowers or presents people send, no matter how large and comfortable the room and no matter how many prayers are said: my aunt is dying.

And I hate it.

Being Disabled VS Having a Disability

The other night, Mama Sharon (Charmaine's mama) asked me a question and I didn't have a good answer for it. She had been reading my blog and wanted to know, "Why do you see yourself as disabled?"

And I suppose the truth is, I don't.

I think I used the words once for a blog title when speaking about unrequited love on Valentine's day and I wrote "I have a crush (I'm disabled, not dead)" because I think I am super cool when I use catchy titles like that (alliteration for the win!) but generally I don't say I'm disabled because I mostly don't think of myself as disabled.

By all medical accounts, I am disabled - I have been since I was a child and here is why:

As a child I was diagnosed with multiple chronic illnesses, forcing me to miss a lot of school. Cumulatively, I missed over a year and a half of schooling.
I am not disabled because I completed my schooling. I completed it in anyway I could, and I completed it with quite a good mark too. I got into university, and I am almost completed university.


As my neurological symptoms progressed, there is many more reasons I could list as being considered disability related:

• I fail neurological exams on my left side
• I struggle to walk down hills, particularly with uneven terrain
• If I was going into the Hunger Games, I would die (don't lie: you would probably too)
• My arm prefers to be in a bent position
• My fingers do not move fast enough on my left arm to play the piano (well there goes my chances of being the next Mozart!)
• I struggle with aphasia, some times more than others
• I have had friends have to feed me, give me meds, transfer me, and learn sign language for me
• I struggle going along the rows at the movie cinema and in auditoriums
• My left hand has a weak grip - I often drop my keys and other items (don't worry: the iPhone is still in one piece)
• You don't want me on your team for Survivor
• My gait has been documented in many different ways. I mostly refer to it as "just mildly stupid"
• My fine motor skills are lacking on my left side including my hand writing and skills like make up and nail polish. If anyone wants to look like their three-year-old did their make up for them, I have those mad-skills.
• I struggle with aspiration of thin liquids
• I can never leave the house without my AAC and my meds bag

For all intents and purposes, medical professionals would consider me as disabled or someone with a disability.

Then why don't I really think that? Because I don't, not on a daily basis. Yes, I can get pissed off when I can't walk on the sand or something like that. But I don't think "Woe is me, I am disabled." I more think "this is one of the most terrifying things I am trying to do. Left ankle now would be a great time for you to cooperate"

There is a quote by Scott Hamilton: "The only disability in life is a bad attitude"

The truth is... I can't stand that quote. I hate a lot of the pictures that go with it - "inspiration porn", as it is termed. I find that quote offensive. Try telling my friends that if they just changed their attitude their multiple and complex disabilities would disappear; they would suddenly not be mobile and verbal if they saw life a bit more positively. That quote strikes a nerve with me.

But I see what the quote means. I do see the tiny glimmer of truth.

Attitude undoubtedly helps a situation, I have never denied that. You cannot do anything in life if you do not have the will to do it and the belief that it is possible. Recently, I did change my attitude. I was in a position to decide I could improve. I had the support of close friends. Here are the ways in which I have improved:

• I can walk down stairs independently
• Not only can I walk down the stairs independently: I can assist Charmaine down the stairs with no trouble.
• I have mad typing skills. I am not even sure how I do it, but I am fairly sure I use the ring finger of my left hand a lot (whereas I used to use my pointer finger).
• I can sit on stools and chairs without backs
• I can cut my food easily using a knife and fork
• I would push you off the cliff in the Hunger Games first, so I would hopefully not be the FIRST to die
• I drive very confidently
• I have gross motor strength.
• My gait is now "mostly not stupid"
• I have an ability to communicate always, one way or another. My friends know the important signs, including all the swear words.
• Although I still prefer to sit cross-legged, I can sit comfortably in other positions
• I take Epilepsy medication and that has helped a lot
• I have CONFIDENCE to do so much more now
• When people don't treat me as though I am disabled, then I am not.

I might have a disability, in all official accounts. But the very term disability says not being able to do something. I can do everything I want to do - I always find a way. I mightn't be able to shuffle into the middle of the cinema row, but I can sit on the edge. The movie is just as good there. I use a friend's arm to help me walk on the beach - the beach is just as beautiful, potentially even more so when you are in the company of those who you love.

The disabilities don't disable me, really. Because I have my life. I do what I want and achieve a lot. I have always said I will, and I can. I recently made the active choice to not accept the motor neurological deterioration the doctors were seeing. A most beautiful friend said to me "Good. Because you still have a lot of life left to live".

She's right. I do.

I am always finding ways to improve. The other day, I carried one plate in each hand. These plates were heavy, I almost dropped them, but I didn't - well done left wrist. My friends are always fixing my left arm when they see it bend or twisted in a position it should not be in, when I don't notice it.

If my disabilities don't stop me from being able to do anything I dream of, are they really disabilities?

If I can work a way around them to live my life, am I actually disabled?

Or is that just what society says?

In other news, I am changing my AAC. More on that soon...

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.

Wreck-It Ralph: The Parallels of Disability

Wreck-It Ralph is a movie by Disney Pixar, released in 2012. It's a really great film for the whole family: there is arcade nostalgia stirred up for the oldies and all the joys of Disney Pixar for the young'uns (or oldies, let's be honest...). I'm not going to lie... It is one of my favourite movies.

The story line of the movie is about a sad, "bad guy" Ralph who, after 30 years of being the bad guy, is lonely and ready for change.He leaves his own game, 'Fix it Felix, Jr' in search of a medal - to prove to the others that he is a good guy. This task proves not to be straightforward, of course. He "game jumps" to a game called "Hero's Duty" and gets his medal without too much difficulty, but from there causes havoc and ends up in a game called "Sugar Rush". From there, more adventure begins. Ralph meets a girl called Vanellope Von Schweetz. Vanellope lives in Sugar Rush, a racing game, but she is an outcast. She is not a racer and simply referred to as "the glitch", due to her tendency to, well, glitch.
I really enjoy the rest of the plot, but I will skip ahead to the ending where Vanellope does become a racer. However, her glitch doesn't go away - she learns to live with it and use it to her advantage. That's the point I really want to make.

I love this movie. I have watched it too many times. I recorded it on TV, and watched it many times and then my friend Luke gifted it to me on iTunes. It is on my iPad and iPhone, and I watch it whenever I want. I enjoy watching it whenever I feel sad, down, nervous or any general negative feeling.

The above is a picture (an old one) of my AAC. I use PogoBoards, and will talk more about it at a later date. But as you can see, Wreck-It Ralph has the prime position.

The reason I love the movie is nothing to do with how much I would love to live in a world made of lollies like Sugar Rush. It is nothing to do with the awesomeness of the character voice by Jane Lynch. It is to do with Vanellope, her friend and her glitch. It's true: I see myself in a Disney Pixar character, I see who I want to be: and this is why -

1. Vanellope has a disability. People believe that this means she cannot do much and that she will never be a racer, her dream. Her dream is so strong and she makes it. She proves to everyone that she can do it.

2. Vanellope's disability doesn't go away. There is no fairy godmother. There is no magic potion. At the end of the day, she still has a glitch but instead of seeing it as a problem she sees it as a superpower. Okay, relating that to disability is possibly the cheesiest thing I could ever do, but you know...

3. Ralph is Vanellope's friend, and at first he is a bit confused by her glitch but soon after, he doesn't care. He sees her as a person - as much more than a glitch. I often tell my friends that they are Ralph, and I am Vanellope. I have some of the best friends. I have one friend who does transfers with me the best, one friend who can position me when I am sitting the best and one friend who cooks the best food. I have the best friends. All of them are Wreck-It Ralph.

4. I like Vanellope's style. I want to be able to pull that off.

You can always find parallels to disability in a lot of things - in books, in movies, in almost anything. People have been talking about seeing it in the song "Let it Go" in Frozen (I see other parallels for that, for my own personal experience). But this is what I see in Wreck-It Ralph. If you haven't seen Wreck-It Ralph, you should.

And Wicked, the Broadway play. That's another one. But that's a post for another day, too.

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