Speech difficulties: do's and don'ts

Hi,

Recently I've been thinking about the impact of having speech and language difficulties in every day life. For me, as well as having CP, I have a minor speech difficulty which has got progressively better due to speech therapy and a lot of hard work, at one point it was so bad that only my mum and carers could understand me and now most people can.

I feel that having a speech difficulty it can be as frustrating as any disability. I mean we all have a natural instinct to voice our opinions and for people who have stammers or can't pronounce certain sounds it can be a massive barrier in every day life.

Now my experiences with disability are mostly to do with my physical disability and not so much to do with my speech so I've had to talk with different people about how it effects them and what they would like people to do differently to be inclusive. So here's a list of 5 things that in our opinion need to be hi lighted.

1. Be patient! Don't talk over them or change the subject before they have the chance to say what they have to say

2. Maintain eye contact! Don't appear to be distracted and not paying attention. Show them you care about what they are saying and that you are listening until they are able to say it.

3.if they ask you to order food for them or introduce them, don't tell them "they need to learn how" or "they need to practice" just help out!

4.DO NOT ask "what's wrong?" Or "are you sick?" You have no idea how downgrading that is.

5.DO NOT laugh or snicker when they can't quite get a word out when speaking or reading in class.

By doing these things you can boost confidence and maybe start to break the barrier of frustration.

Byeeeeeeeeeeee

The wonderful carers!

Hi,

Today I'm going to write about something that is a regular occurrence for many disabled people, including moi, but hasn't really been spoken about from a young persons point of view; having carers.

So what actually is a carer?
Well Google says 'carer-a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.' Now this is true to an point but to so many these people are way much more they are fast thinking, supportive, non-judgmental, a companion; most importantly these people are practically our freedom-givers.

Whenever people, non-disabled or perhaps people who don't need carers, ask me about having carers it's always weird for me, 'cause I know no difference. I can't imagine a time in my life when I haven't gotten support at home or whatever. I'm extremely lucky in that sense, some disabled people have smaller packages meaning less care and less freedom I guess.

In my life time we have had about 50 odd carers. It's a lot I know but some people don't realise how hard this job really is, even I know that. But more recently that I'm more involved in the interview process and helping pick the right applicants for the role;to be honest it's really scary. I mean its a stranger. There's always that subconscious alarm in my head that she will be some sort of crazed axe murderer-it could happen! Anyway for me interviews are weird because the applicants can be dead serious and nervous and that puts me on edge.

One thing that confuses me is other people's perspective on me and my carers. Like I am pretty laid back with my carers but what do other people,who don't know that I have carers, do they think they are my sisters?,cousins?,my aunts? I don't know but it makes me wonder.
I was shopping somewhere with my mum in her wheelchair  and my carer when I was like a toddler and we had to use the staff lift and only my mum could fit in it so me,my carer and the shop assistant went down the stairs next to it. Me being an attached toddler I couldn't bare being separated from my mum so I started crying. the shop assistant said to me 'Don't worry, grandma will be out soon' implying my carer was my mum and my mum was my grandma, but the worst thing-my mum heard everything! Anyway most people do pre judge and that's one of the funniest ones I've experienced.

So in all carers are a life line for many and they really don't get the credit they deserve so a massive THANK YOU from me and I really appreciate and understand how hard and grueling this job can be.

Byeeeeeeeeeeeeeeeee

I'll be your clown.......

Hi, 

Okay, I've always loved music, since I was a kid,listening to radio 2 with my mum on the school run for my brother, then playing the piano at school and becoming better every lesson at adapting the music so I can play with one hand and right now, listening to music while I am writing-there's just something captivating about it for me, as if I'm in my own little world with music. I feel that music can explain so much about different peoples lives and who they are. It's so special in that sense- like a conversation between  me and the artist which is unique to everyone. 

There is one song that for me sums up how I feel having a physical disability; it's a song that has no intention to be connected to disability,but it has a deep meaning for me and it's called clown by Emeli Sandé. 

 I'm going to give you my interpretation of the song:

 

I guess it's funnier from where you're standing (as in its = cerebral palsy)

Cause from over here I missed the joke (as in CP isn't funny)

Clear the way for my crash landing (you making a joke out of it knocks me back a bit)

I've done it again (I've lashed out about it before)

Another number for your notes ( number = a blog post)

I'd be smiling if I wasn't so desperate (I don't want my disability)

I'd be patient if I had the time (I want to be 'normal')

I could stop and answer all of your questions (I want people to learn about disability)

As soon as I find out 

How I can move from the back of the line (back of the line = not getting recognised for my academic side because of CP and people assuming that I am dumb)

[Chorus:]

I'll be your clown (I guess I'm labelled a 'freak' in some's eyes)

Behind the glass (being put into boxes/labelled)

Go 'head and laugh

Cause it's funny ( you laugh because you don't understand)

I would too if I saw me (I would laugh if I didn't understand)

I'll be your clown (I believe them in when they think I'm a freak)

On your favourite channel

My life's a circus circus

Round in circles (I believe them then I don't and so on...)

I'm selling out tonight

I'd be less angry if it was my decision ( decision = if I could choose to have a disability)

And the money was just rolling in

If I had more than my ambition (if I have more confidence and strength)

I'll have time for 'Please'

I'll have time for 'Thank you' (sorry that I seem ungrateful about my disability)

As soon as I win

[Chorus]

From a distance my choice is simple 

From a distance I can entertain (if you don't really know me I am an outsider and you laugh)

So you can see me

I put make-up on my face (I am not as strong and independent as you think I am)

But there's no way you can feel it

From so far away (you have absolutely no idea how it feels for me)

[Chorus]

I know it is deep but it's how I feel and music can provoke feelings that I didn't even know I had let alone anyone else, the point of this is I feel that music is a really useful tool to help explain how you feel if it's hard to explain or you don't want to even. I guess you find out a lot about people when you put yourself in their shoes and listen to music they like- it brings a whole new meaning to it. 

 

*I have just realised that I've probably broken a copyright law or something, but I would count this as an educational purpose,wouldn't you? Anyways

Hopefully This could help people express how they feel 

Byeeeeeeeeee

Self-conscious shopping

Hi,

So this post is going to be about an experience that I've had a certain shopping centre nicknamed meadowhell by many, a righteous name for it,especially near Christmas!

Whenever I'm out and using my chair, which isn't that often anymore, I always get a bit self-conscious about people looking at me and I feel that people,what's the best way to say this? Well,to be honest they think I'm a bit thick, and that's purely based on my physical appearance eg my disability/wheelchair.

Now, for when kids aged 1-5 stares,I don't mind as much, they aren't use to wheelchairs or disabilities but they don't really care about that I'm disabled, so I just smile back. But what gets me is when the parents get anxious around my disability. Just a couple months ago I was wheeling through said shopping Center with my friend and we were sitting in somewhere like Starbucks, and a table over there was a toddler just smiling at us probably wondering 'why is that girl in a buggy (wheelchair) like me?' Anyway we just smiled back, then the mum came back and she turned around; looked at my friend, who is non-disabled,and the mum was fine but when she looked at me she had a sort of look on her face and she got really anxious for some reason. I mean why? Honestly, I don't bite!
Well when I self conscious I do get a bit sensitive but I remember thinking 'what does this kid- to be scared of disabled people?' I don't know

Well that's it 

Byeeeeeeeeeeeeeeeee

what do I want to be when I'm older?

Hi,

So today I was really stuck on what to post for you guys, I asked someone who reads my blog for ideas, not mentioning disability, and she said what about 'what do you want to be when you are older?' And the more I think about it, I see that disability advocacy comes into my future quite frequently.

Mainly,I sort of want to be a disability writer, maybe on this blog or something bigger even, I feel that in this day and age and in the future,media will be a key way to voice my opinions because quite frankly not many people will fully take me seriously, whether that's because my speech is slightly impaired or they don't understand what I'm on about ,when I speak in front of them- it's always been that way and for the foreseeable future I don't see much change too that sadly. But blogging is something that even if it's not my main job it's going to be a side project (also 2500+ views WOW!) the more I write on here, the more confidence I gain which is vital if I want to be a somebody one day.

Also, I feel that people can read this blog,let it sink in but then forget the message. This is probably because most of the people reading this don't know me so they don't have that association with the fact that there is a person who writes this instead of a robot, meaning that they don't have a personal connection between me and them away from the blog. That is why I want to when I'm older, maybe even now, talk to people about disability for example the ways of patronising people, how to act around disabled people and the fact we are the same as anyone else. 

Even if it is just my own school that I may have a talk with, it will hopefully mean that people can put themselves in our shoes and they will have a better understanding of disability because its not taught that much at schools today, so when it comes down to it my generation won't have a proper understanding and that's when the problems start for many people.

So I bet you weren't expecting that, but that's what I want to do! It may not be a 'proper' job in some people's minds but I guess I want to make a living out of something I can't change about myself which is understandable when you have to put up with it every day,you may as well.

Byeeeeee 

patronising people

Hi,

Right. This really annoys me; not a lot actually makes me want to scream at people but this does. People who know me well,will know this already, when it comes to patronising someone, I get angry with a deep passion.

If I asked you 'who do you think patronises people the most?' You may say bullies or ignorant so or so's but what if I said it was (some) teachers? I know it sounds weird but from what I've experienced teachers can be the worst patronisers or they can be really understanding and nice- there's no in between.

For example my old Y6 teacher was really patronising and I know she didn't mean to be but it always made me feel like, I don't know what else to describe it, but weird and sort of cold. She would always say something like 'you're an inspiration.' For doing something ordinary- she wouldn't say that too my class mates when they were doing exactly the same thing. The worst thing is I didn't realise what it was until the day I left that school,by then it was to late for me to say something. So I didn't. 

Since then, things have changed a bit. Most of the teachers at my secondary school know the way I am and sort of leave me to get on with the ordinary work and they know if I need help, I will just ask! But there's still a minority of them that treat me like I'm four. Normally it's the teacher who is a supply/student or a teacher who hasn't taught me/hasn't read my blog before. 

I'm not blaming anyone but in today's society we are subconsciously judging people's mental capacity on their looks. So for me, having right-sided hemiplegic cerebral palsy, the first judgements aren't that good. I love proving people wrong. So if a teacher was to be patronising I would do my absolute best work and show them, honestly some reactions are priceless, they can't believe that a SEN kid can do level 7 work. But I prove them wrong every time. 

I do wish that some teachers would try to have an open mind but I can't change their opinions, which sucked at first; not everyone can change I've expected that now.

I could go on about different patronising people but this was the most dominant one that sprung to mind.

Byeeeeee

Why I am so open about my disability?

Hi,

I thought I would write this post because there's a lot of stigma attached to disability and I try to be as honest with people about my condition as I can because I feel people need to educated in the way they treat people with ,especially physical, disabilities.

One of the main reasons why I'm so open about my condition is cause its every day thing for me and I know no difference. In my family, I'm not the only one who has disability, my mum has bilateral dysplasia which affects her hips,so I've grown up around people who also are disabled, so its something we talk about a lot at home, I feel this gives me the courage to talk to people about how disability affects me from two perspectives: as a disabled person myself and as a daughter of a disabled person which is very Important.

I choose to be open. It's not like I am being forced to be or anything, I could just get on with it by myself but that's not who I am. The world is full of ignorant people- I could of called them a lot worse, a whole lot worse- but the point is I want my generation to learn now so when they are in the big bad world they aren't afraid to ask questions and more importantly not to be discriminative against us or indeed anyone. In my opinion That should just everyday common sense; what hurts the most is that it can come from people who you are friends with and they don't even know what they are doing to you in your head, I learnt that the hard way in PE. 

Also what's the point of hiding your own disability from others? People who are ignorant will Become discriminative towards you, even if they can't tell that they are and that's just hell to be honest. Having a disability, you need to learn to stand up for yourself! Part of that for me is to tell people about your disability and how they need to understand how to treat you. In September,our first English lessons were about writing a letter to our teacher to tell her about us and in my first paragraph I was talking about cerebral palsy,my blog and the way I adapt to different things in class. That really helped me to get across it to her or for other teachers I have talked about my blog and they read it and that helps as well. So basically don't be afraid to talk about disability because it only educates people and that's a good thing.

I hope you liked this 

Byeeeeeeeee