Feeling Proud

Firstly, sorry for not posting so much recently. I guess everyone has been busy with Christmas/Family time etc.

Talking of Christmas, I hope everyone had a good one. If you struggle at this time of year (I know many do, including myself at times) I hope you saw twitter. I was thinking of you. And still am.

I hope Santa was good to you all. I was a very lucky girl. I got a new laptop, which will be wonderful for all the blogging (and hopefully vlogging) I plan to do in 2016!

I thought for the end of the year I’d end on the happy note of discussing things we’ve done (despite having a disability) that we’re proud of. It doesn’t have to be in the last year. Just your proudest moments that you would like to share with us.

I have come up with my top five (in no particular order):

1) Passing my driving test – Yes, I have Cerebral Palsy, but I can drive 🙂 It took me a few attempts to pass, but I got there. I was so so happy (as everyone is when they pass), it gave me the independence that I so desperately longed for. I passed my test in a standard, automatic car. I also have a keypad (with buttons for indicators, lights etc. on) and steering ball attached to the wheel. That’s how I control the car as I can only use my right hand (along with right leg for accelerator and break).

Two years ago, I got a Wheelchair Accessible Vehicle (WAV) on the Motability Scheme. It is a Fiat Qubo and I love it! The back is adapted so it has an electronic ramp that opens and closes using buttons on the key fob, so I can drive in and drive whilst still sat in my wheelchair. Now I can be truly independent and go shopping or visiting friends on my own, without needing somebody to get my chair in and out of the car for me 🙂

2) Going Away to University – I have a psychology degree, it was tough at times, but I managed it. I have letters after my name: Louise Brookes BSc (sounds good, right?!) I achieved my degree at Loughborough university in Leicestershire and I lived away from home for three years during this time. Something that society (and probably even my parents and maybe myself initially) wouldn’t really expect from a girl who uses a wheelchair. I was able to live in Loughborough thanks to the wonderful help I received over the three years from a number of Community Service Volunteers (CSVs). This was a scheme that the university used to find students carers (instead of using a care agency). This meant my carers were my age (likely on a gap year before going to university themselves), wanted to go shopping and to the pub with me, and it was so much fun. Even though we rarely see each other these days, I’m so thankful that we’re still friends and I keep in touch with them even though some of them live in Germany and America! Some of the girls may even read this (the joys of modern technology and social media, eh?!).

So, to all the girls that helped me live away from home during my years at university: Thank you for helping me gain independence. I am forever grateful, and I Love You All!

3) Flying to America – I was invited to one of the CSV’s wedding in 2013 and I was so keen to go. However, I’d never been on a plane before and I knew my wheelchair would make things more difficult. Initially, my parents were completely against the idea and said it wouldn’t be possible. What they (and probably me) didn’t realise was how good my powers of persuasion were. It was a month before the wedding and I was shopping with my Dad. I asked if we could go into the travel agents to ‘hypothetically’ price up the cost of flights to Seattle the following month.

An hour later, I had booked flights for Dad and I, We were going to the wedding!! I had such a wonderful 12 days, it’s a time I will never forget. Thank you to my friends for inviting me to the wedding; my other friend and her family for letting me stay at their house over there, and mostly to my Dad for making the trip possible. I just now need to persuade him that it’s time to visit again soon! 😛

4) Travelling Alone – I’m sure most readers will know this, but for those of you reading that don’t have wheels, using public transport when you have a disability is a pain in the neck! On the buses, you have to hope the bus has a ramp; that the driver is kind enough to put it down for you, and that there are no buggies taking up the designated wheelchair space. It’s not great having to manoeuvre into the space backwards, avoiding a pole, with other passengers watching your every (wrong) move either. Oh, and if you want to travel with a friend who also has wheels, you’ll have to go on separate buses because there’s only room for one wheelchair per bus.

There can be no such thing as a spontaneous train ride, because train companies ask that you call up to book assistance for your journey at least 24 hours in advance so that staff members can get a ramp in order for people in wheelchairs to board and alight the train. Even then, sometimes they forget. It’s a bit of a hairy moment waiting to see if staff turn up with a ramp at the station you wish to get off at, and if they don’t you have to shout an innocent passer-by to find a member of staff for you (all before the doors close, which would cause you to carry on and miss your stop). And yes, I have been left on a train before. I had to get off at the next stop then get the next train going back in the opposite direction.

Despite this, train staff are almost always there and they are very polite and helpful. So, my chair does not stop me travelling the country to visit friends; go back to Loughborough; go to see West End shows in London, or to travel around for work. And, if there’s already somebody in a wheelchair in the space I booked in standard class, I get a free upgrade to first class (free drinks, food and WiFi) so it’s not all bad.

5) This blog. I’ve been wanting to write a blog for years. Friends had them when we were younger and were constantly telling me I should start one, but I never knew what I’d write about.

Initially, I wanted ‘Head Over Wheels’ to be a dating site for wheelchair users. Then I wanted it to be a more general discussion forum for those of us with wheels; but after some discussion with a friend who designs websites, I decided to start with a blog as this will be easier to moderate and will hopefully be a good starting point to gain readers/contributors. Maybe this time next year I’ll be writing this post on a forum where we’ve had lots of disability-related discussions. One day I hope to do video interviews with wheelchair users to share their stories and advice etc. too. Fingers Crossed.

I hope you’ve enjoyed reading this. Feel free to email: headoverwheels2015@gmail.com if you would like to share things you’ve done despite having a disability that you’re proud of. Or comment underneath. It would be great to get a discussion going.

Wishing you all a very happy and healthy New Year!

Louise x

Beth’s Story

**WARNING: Potential Mental Health Trigger as Suicidal feelings are mentioned**

Hey, Beth here.

The purpose of my story is to give out a greater awareness of psychical disabilities and mental health problems and this will be done by me sharing my life experiences. Hope you enjoy!

I am at Queen Alexandra College (QAC) in Harborne, Birmingham, doing Health and Social Care Level 3 BTEC. My aim is to go to university and study a foundation degree in Psychology at St Marys University, Twickenham London in September 2016. After completing this degree, my plan is to work in the mental health sector. This is because I am able to relate to different experiences.

During my time at QAC I have been able to become a residential student which has empowered me to feel free and independent. Also my dream is to raise awareness for those with Cerebral Palsy suffering from mental health difficulties.

My early years were full of experiences! My Mum was determined to ensure that I had the best possible chance to develop and be included into as many social and educational opportunities despite me being diagnosed with Cerebral Palsy. She knew that early intervention in physiotherapy, occupational therapy and speech and language therapy was critical in me becoming as able to access education and social situations as possible.

I went to Conductive Education (CE) from 9 months old right the way through to 4 years old help with my physical ability as I could not do the things that other toddlers could do like pick up toys, crawl around, climb, or ride toy cars. But CE helped me to become more confident and hold toys. I was taken to playgroup before moving to nursery at 3.

Initially I went to Wilson Stuart special School nursery. My teacher, and teaching assistants were so caring and thought of mine and the other children’s needs individually. I took part in music and drama, arts and learning numbers and letters. It was hard for me to show that I understood the learning as I could not speak verbally. I was taught to use Makaton and Widget symbols to get my message across.

Having Cerebral Palsy, I found it difficult to eat and drink as my mouth control was poor but I loved my food. I would get frustrated that I could not eat independently; I still do now and get embarrassed about the way I look. I would need to be fed and used a beaker to drink. I had a lovely Speech and Language Therapist who looked at my eating and drinking and offered ways of helping me to not choke.
As I got older, my feeding got better and now I can drink from a straw and I’m able to feed myself some foods. I still sometimes choke but not regularly.

My mum used to invite other Mums and their disabled children to our house to play together. After a few years at Wilson Stuart school it was agreed in my Special Educational Needs annual review that I was more intellectually able and I therefore started to go to Kings Heath mainstream primary school half of the week and the other Wilson Stuart. After some time, I went to Kings Heath full time.

My dream is to raise awareness for those with Cerebral Palsy suffering from mental health difficulties.

Have you ever thought about teenagers that are physically disabled but also suffer from mental health problems? Well, you can now! In 2008 I was admitted into Birmingham Children’s Hospital for a normal procedure to have Botox injections in my legs to help with my muscles relaxing. I was having them every 6 months. But this time it went downhill. When I was coming round from the anesthetic I was totally confused with where I was and who I was with. I didn’t even recognise who my mum, dad, his girlfriend and my brother were. I ended up being admitted into hospital for 6 months. Doctors ended up saying that they thought I was having a major emotional/mental breakdown and having Post Traumatic Stress Disorder.

Then it all came tumbling down again! In the November of 2008 I had a massive seizure out of the blue. I ended staying in hospital for a whole year! I was moved from ward to ward – wards with loud crying babies, bright lights, and noises that sent my senses spinning! I ended being seen by a psychiatrist and things started to get sorted between him and my mum. I ended up being admitted into the CAMHS inpatient ward with loads of mostly teenagers like me suffering from lots of different mental health challenges. I had different therapy and talk time. In time I got better with help and was discharged. I saw the Child and Adolescent Mental Health Services out-patients team until I turned 18.

It felt like suicide was the only way out of the pain and turmoil. There were quite a few times where I attempted ending my life but being in a chair, it was like it was impossible to physically to get myself into a dangerous place. Looking back my wheelchair actually saved my life.

In April 2013 I had quite of family issues and I was doing my GCSEs. It came to a point where life was too much and ended up being diagnosed with anxiety and a form of depression called ‘major depression’.

However, since this I have grown and got to know who I am. It means a lot to have laugh with friends because I feel like I belong despite me have Cerebral Palsy and mental health challenges. With the support from friends, mental health services, and college I am able to manage my depression and feel empowered to come into my own person.

My life has extremely changed during my two years studying at QAC. Firstly, I want to tell you about my friendships group.
My experiences with inclusion and social situations haven’t been great but when I started a new beginning at college I started to create my first ever social life and friendships. As I settled down into college life, I socialised at weekends as it made me feel accepted despite my Cerebral Palsy.

As time when on I felt like I could share some of my personal past with one or two close friends, and when I did this I found out that we have gone through similar experiences and feelings. Still today, my social life has a massive positive on my life and hope we can keep our friendships beyond QAC. As the weeks passed, the group learnt and observed and I have a voice therefore they started hear my voice. Now, they banter and joke about with me. All of these little things have enabled me to own a social life, be a normal 18 year old student and be included.

During studying BTEC Health & Social Care my tutor has empowered me to reach my career goals despite my disability, by pushing and encouraging me to work hard. She treats me with respect and understands my academic as well as my personal needs.

In the college weeks I have had a great speech and language therapist that has helped my voice to be heard in terms of using my communication aid, letting people know the situation to understand my communication and to inform people that I have normal intelligence, therefore they can interact with me as they would like to be talked to.

When I first started residential college, I was put into a certain house due to the access and it was thought my physical needs were greater than they actually were. As the weeks went on I had feelings of isolation as I was more independent and had the mental ability with living in a more high functioning group that wasn’t being met. Therefore it was decided for me to move to a different house after Christmas. Now, I am living in my stride as I can be more and more independent with daily tasks e.g. making a cuppa tea for myself, being responsible with doing my washing and studying. I know it is not a big deal to a lot of people, but to me it is a dream that has come true!

Also, when I am going through a difficult time the staff respect my needs and support me. Lastly in the evenings my social life still runs, as four of my peers live in too so we cook, chill out and have a laugh. This has made me feel so much freer and included in being a student.

Lastly, QAC has given me a voice with some personal issues that come with Depression. They have given me a chance to deal with feelings by providing me with mentoring & counselling. They have helped me in so many ways: from assertiveness to being non-judgmental when things have got tough. They see past my four wheels and only see where I am coming form. Today, I wouldn’t be here if it wasn’t for these wonderful people!

Thank you for taking the time to enter my personal world! I hoped that you have enjoyed reading this.

Beth.

Nikki’s Story

Hi my name is Nikki.

I was asked by Louise if I would contribute to the blog and like Louise I also have Cerebral Palsy. It means I am in a wheelchair and have difficulty with mobility.

I’m sure like many of us, my disability has meant I have had to prove a lot of people wrong and I very often hear the word “can’t”. Well, who says I can’t! When I was younger a doctor once said to my parents “just a little warning Nikki won’t have much of a life”. Well, 10 GCSEs, 3 Alevels and a degree later, I feel I’m doing just fine!
It was advised I was put into a special needs school, and I never really coped too well. My parents fought and fought to get me into a mainstream school and that’s where I stayed until moving onto university to study Media and Commiunication studies. Uni wasn’t much fun for me but that was no reflection on my disability it was just people being – people!

I’m not going to lie, I’m not always upbeat, I have days where I would wish it would all just go away! Sometimes I can’t stand the fact I’m so reliant on others but I try not to let it get to me, after all, there are people worse off, I’m sure 🙂

Being in my chair hasn’t been without its comedic moments either; my Mom says I should write a book, I was once in my electric wheelchair shopping in M&S and I went down an aisle only to hear lots of laughing coming from behind me. I saw I had a trail of underwear dragging behind me – I guess you could say that day was a bit pants 😛

For me one of the best ways I find helps if I feel and bit down is music, it’s kinda become my escapism where I lose myself a while. Recently, one of the best experiences I had was at a Mcbusted concert. Usually I stay seated but the atmosphere was amazing and I wanted to dance so I noticed a bar in front of me so I got up and held tight and I didn’t care how stupid I might have looked I jumped around like everyone else. – I didn’t let my chair stop me from enjoying myself that night, I never have.

I hope I haven’t bored people to tears and this was somewhat enjoyable to read.

Nikki

Poetry Competition Entry

Ask and See
by Eleanor Pilcher 
Let’s talk about the weather,
my family and the cats.
Just ignore me as I roll
all over your welcome mat.

You see I’m a bit bored
of all these nervous looks,
these forced laughs and endless smiles
like you’re guilty leg crooks.

I can talk about my wheels,
my leathery throne, my seat.
But your ignorant chatter, smiles,
are neither humble, nor sweet.

I glide and skate and roll,
across the bumpy ground,
in winter time I need no blades
to help me get around.

In the mornings, I sleep
wake, then sit, then pull
on a helpful hanging bar,
to get into position – I fall

when I get around my kitchen
I knock all over things,
but do you know I have a life?
I knit and drive and sing.

My wheels are my occasional strike
but I’m a person just the same
as him and her and you, I’m
not just simply lame.

So ask me about my life,
about my hobbies, the traffic and me.
Talk to me as you would that person,
as I am normal. Ask, and you’ll see.

I really love this. Wonderful entry. Thank you and congratulations, Eleanor 🙂