Being the "most" Differently-Abled

I know I have spoken a lot about Charmaine, one of my very good friends before, but I don't know if I have ever spoken much about Bri. That's because Bri is different - I met her in the capacity of a volunteer at special school, and she was a student. But now, I know her family and I am her carer, aide, BFF - whatever you want to call it. She has my heart and also has me wrapped around her little finger - we BOTH know it. There are very few other people who I would watch Play School on YouTube for hours with - and recite the episode by heart for.

Bri graduated from high school last year. She is 18 years old; a legal adult. For so many people, this is when life really begins and it can absolutely be true for Bri too - but it just needs takes a certain deal of planning and processing. Some things that may seem quite simple are actually huge achievements. There is absolutely no reason why Bri cannot live a full and rich life...we sometimes just do this in a different way from the average Joe.

Firstly, delighting in the everyday. Shopping trips are not routine or mundane - but they are exciting. Bri is a very visual person and going to the shops presents her with a lot of visual stimulus, it is a chance for choice making and communication skills, it is a chance for shopping and spending some of her money, it is a chance of independence away from her parents and it is a chance for her and me to hang out together at the shops - as lots of people our age do. We get coffee or juice. If we stay at home, we can always find something that we enjoy doing - from arts and crafts, swimming, going on a walk and listening to Taylor Swift.

Recently, Bri and I went to a dance class that I have assisted at for a while. It's called "Differently-Abled Dance". Knowing Bri loves to dance, loves music and loves having a social group (which she has been missing a bit since she graduated), I thought she would really enjoy it. I knew it would also be challenging for her and her anxiety. I wasn't wrong on either count. What I didn't expect was how the other students would react, I hadn't thought about it much.

Most of our students have an intellectual disability or language processing disorder of some description. I think a few have Autism too. A couple of students have Down's Syndrome and one has a mild physical disability, as a result of having a stroke as a baby. The students' verbal abilities range; however, there was nobody who was non-verbal like Briana, or with the same physical disabilities as Briana - indeed, there are no other students in wheelchairs (yet, anyway).

The reactions were varied. One of the students, the oldest one,  walked in and past us as if nothing has changed - as though Bri had always been there. I introduced Bri, and the student's mother told her to say hello. She did and kept walking. I think this student had gone to a special school where she would've known many students in wheelchairs and so it wouldn't have been unusual to her to see someone in a wheelchair.

Three of the other girls arrived at the same time and stopped dead, and stared. I introduced Bri to her. They said hi, shyly. But they weren't sure what to do next, so I encouraged them to go into the studio and go see the other teacher. Bri and I were waiting in the reception, because Bri was feeling a bit nervous as I explained.

The next two girls arrived. One of them smiled excitedly and said "Bri!" and Bri's face lit up too as she walked over. The girl's mum said "Oh, yes, it's Bri!" - as it turned out, the girls had gone to primary school together. The other girl responded negatively - seeming scared or, more likely, jealous.

I sat outside for a few more minutes with Bri, showing her a few clips of Play School to calm her down, and one of our girls came out to see us. She asked what I was showing her, so I said she could watch too. Next she asked me how old Bri was and from there, the questions came a mile a minute. Was I her sister? Did I live at her house? Who did her hair? Does she like play school? Why was she in a wheelchair? Can't she talk? I answered all the questions simply and truthfully and then we went into the studio.

The students were quite fascinated by Bri except for the one who had reacted negatively and the one who hadn't even noticed her. Her old school mate was all over her like a rash. Then the student who was reacting negatively asked me an interesting question, it really took me about:

"What happened to her?"

I said, "Pardon?" because I really didn't understand. I wasn't offended. But I was a surprised to hear the question put like that.

So she said again "Why is she in a wheelchair? What happened to her?"

I said what I had said to the other girls, that this is how Bri was born. The student asked her question again and I gave the same answer. She thought for a moment and then said how her grandpa was now in a wheelchair because he got old, and her question of "what happened to her?" made sense. To her, people go into a wheelchair for a reason - that we all start off walking, essentially. Next week I think I might say that she was sick in her mum's tummy and so she was born this way. Or I may stick to that she was born this way. Or maybe everyone's curiousity has been satisfied.

The class passed well. My most curious student kept telling me when Bri was enjoying herself. I assured her that in a few weeks she would be able to understand when Bri was saying yes or no with her eyes. The other students also liked seeing when Bri was happy.

Once the class got there very natural curiousity out, they were excited to have Bri. There curiousity was not a bad thing. They had questions, I answered them, and now Bri has been to her very first dance class at 18 years old and is now finding her new social group.

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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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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I have a crush (I am disabled, not dead)

Today was an absolutely awesome day, it honestly was. Today, I got my geek on and went to a Red Dwarf Convention. I know, I know. I was amongst all the other people rattling off their sci-fi knowledge and I felt like a bit of an imposter...

The truth is... the only sci-fi show I even watch is Red Dwarf.

It was an expensive day, and getting photographs was expensive too. I had to choose wisely who I wanted to have my photograph taken with as it was 40 dollars a pop and I had already spent a lot to get into the convention. I am not sure I can admit how much I spent to get into the convention: I justify it with the fact that my brother has just gotten back from six months overseas and it was a good way for us to spend some time together...

I chose to have my photo taken with Hattie Hayridge. Although it is a tough call, I think she is ultimately my favourite from Red Dwarf and I was very excited to meet her. I asked her "May I please hug you?" when I first met her, then we had a chat. She admired my glasses, I in return told her how much I admired her comedic style. I was very glad that my aphasia was not so bad today.

Meeting an idol: my favourite comedian, Hattie Hayridge.

 

This really overshadowed everything else that happened today. The fact that I walked down the stairs independently, without a stair rail or another person - something I have not been able to do for a long time - seemed pointless. Don't get me wrong; I was thrilled, it's a massive achievement. But Hattie Hayridge comes once in a lifetime. I'm going to try the stairs again tomorrow. I was texting a friend about it all and the conversation went like this:

Friend: "I am in agony from the high heels last night"

Me: "I know, my feet hurt too. I can't even feel my left toes. But it doesn't even matter. I walked down the stairs independently and - wait for it - I JUST MET HATTIE HAYRIDGE"

Friend: "What? You don't have feeling in your left foot?"

Me: "Yeah. From the shoes. It's not important. I met Hattie Hayridge"

Friend: "You can't walk down the stairs? Go back to that part"

Me: "No I said I can. Without person or rail. But it doesn't matter, I just met Hattie Hayridge"

And then she got the idea and proceeded to ask me appropriate questions about Hattie Hayridge.
It's not that I don't appreciate that I have concerned friends, but guys, I'm normal too. Hattie Hayridge comes once in a lifetime. My left foot hurts because I wore pretty shoes last night, and my left foot is a size bigger than my right. It's not a medical issue. Guys - I met Hattie Hayridge today.

The first conclusion for why something is wrong is not always disability related. Recently, when feeling sad, it has not been all because of coming to terms with things related to disability. It has been because of something far more typical 20 year old related.

I like someone. I have a crush on someone. Fairly sure they don't/can't/won't/shouldn't/couldn't/allthenegative like me back. #unrequitedlove

I don't want to say too much on it - mostly because I'm worried they read this blog. But I'm not so disabled that I don't get crushes on people. I'm not so disabled that I don't get upset when people I like don't like me back.

I'm human.

And this Valentines day I will be enjoying being human - by eating chocolate, all by myself, and not feeling guilty about it. Some of us have companion, some of us have chocolate. Between you and me, I have no problem with my end of the deal.