Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts

Wednesday, March 18, 2015

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.

Tuesday, October 7, 2014

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!

Thursday, June 5, 2014

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.

Thursday, February 20, 2014

4 (more) Special Moments from Special School

I have said it before, and I will say it again: I love Special School. Very few things get between me and Special School. I had a conversation with a good friend, Luke, the other day.

She Types Things: "Luke, you know I love school."

Luke: "Really, I couldn't tell..."

She Types Things: "Like if you were in hospital with only six hours left to live and it was on a school day... I am not sure what I would do... I would be very torn."

Luke: "You would go to school. I have accepted this. It is okay"

She Types Things: "Well you said it, not me"

Of course, I am not completely heartless. I would probably divide my time between school and Luke if that horrible situation did happen ;)

But I do love school, and when I am not at school I am constantly wishing I was at school. I am often thinking about my students. I care for them all, a lot. I want them all to succeed. I want them all to go beyond our expectations and exceed their wildest dreams. I think about this a lot.

I also want them to have a chance to be kids, or teenagers as the case may be. The other day my "sweet student" and "princess" were listening to music. They took it in turns to, using a switch, choose the music. They were just two girls, listening to music together as friends.



Please feel free to share in my joy of four more special moments from Special School.

#1 I have a new student in my classroom and she has been getting to know me over the past few weeks. This week when I entered the room she ran up to me as fast as she could to give me a hug. She is a beautiful child and this warmed my heart. Seeing recognition from students does make me happy: it is validation that I am doing my job.

#2 Communication is always on my mind with all of my students. I personally believe that communication is the key for thriving. One of my students, who I have now known for a year and who I refer to as "my sweet student", does not YET have an AAC or reliable system of communication that works for her. This is a lengthy issue in itself and I won't get into it now. I am able to understand her basic "yes" and "no" responses, but when she communicates something more it gives me great joy. It gives me even greater joy when it is something with typical teenage attitude and spunk. The other day, when a student was annoying her - she rolled her eyes at them and I burst out laughing, so she rolled her eyes again and smiled at me. THIS is fantastic. This is communication. This is gold.

#3 I love seeing a student improve. This can be over a long period of time, or it can be a sudden change that comes from a change of attitude, or a change of teaching method (or a combination of both). Seeing "my main mate" rock out a skill with a new attitude after doing such a poor job the week previous was such a thrill.

#4 I learn more as a volunteer at school than I ever did as a student. I have always said I wish I cared about school this much as a student. This week, as I was watching my teacher work students I was struck once again by the fact that she is an outstanding and marvellous teacher. I want to learn everything I possibly can from her.



Friday, February 14, 2014

My Friend's Disability Pisses Me Off

One of my greatest friends is named Rebecca. She and I get along for many reasons; for example, we just spent Valentine's Day watching Despicable Me together - and neither of us could really imagine anything better. Rebecca is a wonderfully supportive human being, and we tend to agree a lot on a lot of things - but there is one thing we will never agree on.

Rebecca uses a GPS to navigate everywhere. I never, ever use them. I am an old fashioned lady.

(Yep. Pretty close approximation to what I see in the mirror).

I would much rather look up on a map (Google maps, I'm not THAT old fashioned), and know where I am going whereas Rebecca can blindly trust the talking machine. I can rely on my sense of direction fairly accurately whereas Rebecca would end up in outer Mongolia if she attempted to try to rely on hers. We will never agree on the use of the GPS.

And that is okay.

A wise blogger by the name of Mary Evelyn over at What Do You Do, Dear? recently wrote about her son getting his new wheelchair and in the post she said that "[he] only needed the right tools. Just like you and me". Of course, Mary Evelyn with her wise words has caused me to think. Well done, M.E.

We do all need different tools. For Rebecca, it is the GPS. For me, I'd rather a proper map. 

I have other friends as well as Rebecca. One of my other friends is named Heidi. Heidi and me have been friends since high school. Throughout life, I was a dancer and Heidi was a musician. Then fate dealt a cruel hand.

Within twenty-four hours of each other, I lost function of the left side of my body and never properly regained it. Heidi lost hearing in her left ear. She has never regained it.

I am angry at my friend's disability. 

I think it is unfair. I also think it could've possibly been reversed with hyperbaric treatment. My mum is a hyperbaric specialist and has successfully reverse multiple cases of sudden onset hearing loss. I think it would've been at least worth a try. My mum was very keen to try. But by the time Heidi was properly diagnosed, it was too late. I am angry and frustrated that my mum and I didn't fight harder; we didn't talk to her parents; we didn't really believe what was happening... 

She wears a hearing aid now. She only got it recently.

We only need the right tools.

I still make sure I go outside and dance in the rain. Heidi can still play music, she adapted. We learn to adapt: it's the name of the game.

What tools especially help you get through life? (Red wine is an acceptable answer...)

Sunday, February 9, 2014

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.

Wednesday, January 29, 2014

First Day Back at School! 4 Special Moments from Special School.

After a sleepless night filled with excitement, today was my first day back at school! I honestly could not wait. I have a new backpack, a sparkly blue lunch box, a Disney princess water bottle and butterfly hair clips: did somebody say "prepared!" ?


My parents had to put up with me the night before randomly shouting out "SCHOOL!" when the joy overtook me, and all of my friends endured multiple texts that said "school tomorrow! school tomorrow! school tomorrow!". I wish I had been this dedicated and enthusiastic when I was in high school...

Because I am a model pupil, and I have a sterling record to maintain - on the first day back I was... LATE. The back-to-school traffic was worst than anticipated and I was late, but why break the habit of a life time?

It was strange returning to school because the reality is I had only been there a week ago. What??
Yes, it was Summer holidays, but I was working in the Summer program so I had been in most days. But it was totally different. Only one of my students was there. I had three who I hadn't seen in 6 weeks, as well as my teacher. I missed them all dearly.

I arrived at the school and was quickly swallowed by a mild feeling of apprehension. What was going to be different about this year? The excitement took over though, and I made my way to A Block. The day had begun.

It was slow starting. Lots to do. Physios checking positioning, as well as manual handling of all the children. That took a long time. There were aides who I didn't know very well in the classroom. In short, the routine is yet to come. But the special moments? They existed. I will tell you about 4 of them.

#1 One of my students was a bit late, as she had an appointment. Her mother brought her into class later. I've never met her mother, mostly this student arrives by bus. When my student saw me, after six weeks apart, she looked at me and her face lit up with a massive grin. It was a truly spectacular moment. Her mother was then very keen to meet me, and we had a lovely introduction. It was a great start to the day.

#2 Later on, after having morning tea with another student and seeing her smile from a few stories I was telling her about my holidays, I lay down next to her on the floor. I showed her Katy Perry's "Roar". She loved it. I love it. How is that not awesome? Introducing ANYONE to Katy Perry is a special moment. I knew she liked P!nk, but I'm more of a Katy Perry fan ;)

#3 In the afternoon, the student from the beginning of the day smiled at me. I smiled back and said hello, but I didn't pay close enough attention. Quickly she turned to crying, and I paid closer attention. I asked her what was wrong, as she had felt too hot before. Her skin felt fine now. She had also stopped crying really quickly. I got out her PECs board and went through the options. When I got to "read story", she smiled and looked up - asking me to read her a story. This is the very first time she has ever initiated conversation with me beyond needing a need of comfort (food/toilet/temperature) met. This was a massive deal. We read "The Very Busy Spider" by Eric Carle.



#4 At the end of the day, my student from the Summer program who is now in the next door classroom was sitting outside our classroom - refusing to move. Everyone thought he was distracted by the activity in our classroom, but I had a sneaking suspicion he was waiting for me. When I came outside he stood up and, instead of using his own walker, he held my hands and helped me push a student's wheelchair. The fact that he waiting for me.... well, it's a bit selfish of me, but it was a little bit adorable.


And that is how we have started the year. It will be interesting. With one of my students next door, two new students, new aides, new routines... well the best part about school and life is learning!

Thank God for learning.