November 02, 2021
I hope everyone is well. I’ve just had a look and it was a year ago that I last wrote a blog for CP Teens UK – it’s crazy!! And it’s crazy that so much has happened since then!!
One of the nice things has been going away and visiting family and friends up north in Cheshire. The pandemic hit everyone so hard and not seeing family and friends has been very difficult. Although we were allowed to travel about a bit last year and earlier this year the north seems to have been in permanent lockdown and it was hard on everyone. I do hope that you have all been able to meet up with your family and friends now there is a bit of normality.
I’m still working at Marjon University – the job was only supposed to be for a year but a few things happened and I have ended up staying on until December which I am really happy about it.
I then have a new job starting in January up in Northampton at my old prep school as a Residential Gap Student – I’m so excited!! I’ll be living in a house with 3 other Gap Students just outside the school grounds. The job will be helping in the PE department, classroom support for the younger children and helping to run the boarding house in the evenings and mornings.
I am hoping that by doing this job for 6 months, it will help me to decide whether I would like to do Teacher Training. If I did decide to do this, I would look at School Direct which is learning to be a teacher whilst being employed and working in a school.
Last week was a very exciting and emotional time for me as I passed my driving test!! I first got my provisional licence in 2014 after going through an assessment with Motor mobility. They assessed me and said I needed an automatic with a left foot accelerator. I started having driving lessons in Plymouth with BSM who were the only driving school to have this car. I had a nice instructor for about a year but then he retired and I lost interest before going off to University and not having time. It was also very hard at the time to find an instructor with an automatic adapted car – there were non around the Plymouth area. I'd had an adapted car for several years but I always felt happier driving with dual control so didn't drive much with my parents.
It wasn’t until last September the interest of learning to drive came back and we found an instructor with Drive Cornwall and so I began to travel weekly to St Austell and then to Bodmin for my lessons. It’s been a long process – especially with the pandemic stopping and starting lessons. I also drove to and from work every day with one of my parents and had lots of practise. But I am so proud of myself and I did have a wonderful instructor helping me.
I have also just bought myself a new car – an Audi A1 – sooo excited to hopefully receive it in December or January!!!
I am yet to get back to diving and coaching. The pool opened early October but are still not back to full classes etc.
I have been able to ski a bit and I’m very excited that we are booked to go to Austria in December and next February – so excited to use my new outriggers that my parents just bought me for Christmas!
With one of my dogs passing away last year, and leaving her daughter heartbroken, we decided to get a puppy at the beginning of this year – we are now wondering whether this was a good idea haha – she’s a monster but we do love her to bits!
Hope everyone stays safe
Georgia'S Entry - independence
December 4, 2020
It’s been a while. I hope everyone is well and looking forward to what will be a different Christmas this year. The theme for this post is independence, and I always have a lot to talk about when it comes to this topic and this year in particular I feel like I have more to discuss due to my experiences in 2020.
A few months ago I passed my driving test, which was a big achievement for me considering that by the point I passed I’d been on my journey to driving for four years! Driving will offer me so much more independence, for example, now I have my own car with a hoist, my electric wheelchair is a lot more accessible. Even if I’m not driving I can still have access to my wheelchair and it gives me a lot more freedom than relying on someone to push me.
In terms of driving my car all by myself and independence I haven’t quite got there yet. However, I know that this is okay and using my occupational therapy knowledge I wanted to make sense of my situation with driving during this post.
Jennifer Creek defines independence as "the concept of being able to perform everyday activities at a satisfactory level". I can apply this to driving. Yes, I wish I was more confident with driving, and feel like I probably could have gone out more (if my car wasn’t playing up) but I’m satisfied with the improvement I have made since passing my test. This is because I have been grading this activity and increasing the demands of driving.
For example, as my car was adapted before I started having driving lessons I still have an emergency break in it. I have decided that I still want it there because at the moment I don’t feel confident enough. I will remove it eventually, I just need to to improve my confidence.
1. Drive with someone in the front seat.
2. Drive with someone in the back seat.
3. Drive independently.
4. Remove the brake.
This is my plan to improve my independence with driving. The last time I drove, my Dad sat in the back seat and that was a big step, I was so proud of myself after that drive. But since then my car has been playing up and I haven’t driven in a while, so I may have to decrease the demands and go back to step 1 and I am satisfied with that.
I know that I will eventually get to step 4, it might take a little longer than most but I will get there. I’m a lot more Independent with driving than I was a year ago and therefore I am satisfied with my independence for the time being and that’s all that matters.
Thank you for reading,
Gavin'S Entry - independence
November 20, 2020
I hope you are all well and staying safe. I don't know about you but I'm getting a sense of déjà vu writing in this diary. Let’s just say, the last six months have been really quiet for me in comparison to other years. Although I have been able to continue to work, study and train (either from home or socially distanced) during this year despite the pandemic which
I’m very grateful for.
All the Ambassadors have been given the theme of independence to incorporate into their latest blog. This has got me thinking about what it means to me to be independent and more importantly, what allows me to be independent. Everybody will have their own idea of what the word ‘independence’ means and looks like to them. There is no right or wrong answer. Your independence is unique to you and nobody else shares it.
Personally, independence means that I am able to do certain tasks on my own and if not, I have the right to access support in order to help me become as independent as possible. I would like to stress the latter point as I think this can be often overlooked. Just because I’m unable to do something in the conventional way doesn’t mean I can’t do it another way or
get appropriate support if the conventional way is the only method, but 9 times out of 10, I’m able to come up with an alternative.
For me, finding alternative ways of doing things is all about accessibility. It’s so important to enabling people to become more independent. Even the simplest of adjustments can make a big difference such as ramp access into a building or an adaptation in a home. When I was younger, we had a stairlift installed in our home. This meant that I no longer had to wait for someone to come and help me go up and down the stairs. I still use it today.
Accessibility has moved forward from where it once was but it definitely could be better. The only way accessibility is going to improve is through being willing to adapt and being open-minded as a society.
Talking about adapting, this is something that we have had to do a lot of in recent times. I feel it’s very apt to look at independence in the current context. We are having to find new and innovative ways to adapt as we navigate ourselves through a global pandemic. For some, it has meant they have been able to become more independent than they were
before. If we can take anything positive away from our time in isolation, it is our ability to adapt. Whether it’s working from home, having Zoom calls with family and friends or doing online learning, we all have found alternative ways of doing things during this period. We have a lot to thank technology for!
I have been amazed to see how the world has adapted during this time. Of course, I wish it wasn't under such devastating consequences. However, I couldn’t help but I feel a twinge of sadness when I saw everybody become accustomed to working from home - knowing that for decades some disabled people haven't had that option available to them – or when
students were told their grades were going to be based on assessed coursework this year but yet this couldn’t be done for a small percentage of students with physical disabilities who are significantly disadvantaged by the exam system every year.
As we start to move forward and think about life after lockdown, it is more important than ever that we consider everybody’s needs. We must not forget about those who have been shielding for many months now and as a consequence, they have been the hardest hit by the pandemic.
Independence encompasses many aspects of our life, in more ways than we might think. However, it shouldn’t be taken for granted.
November 06, 2020
Gosh, I cannot believe we are already into November and soon it will be Christmas!! It might be a bit too early to think about it, but I think we need something exciting to look forward to!
I hope everyone has been staying safe and managing to keep occupied. It’s such a terrible time for everyone and we all need to support each other and help out where we can.
The past few months have fortunately been busy. When we are allowed out of lockdown, news soon came that pools would reopen – yay! I think I had about a week to get excited that I would be able to dive and coach again. Then one evening I saw an announcement on social media that the Life Centre was in desperate need of repair and wouldn't be opening until April next year. So all the staff and divers and swimmers were informed by Facebook before they had been contacted by the company who owned the Leisure Centre. It caused chaos ! Despite the centre being only 10 years old there were really bad problems. One of the journalists from the BBC contacted me and asked if I would do a radio and TV interview. I understood the work needed to be done but couldn't hold back my frustration when speaking on Radio Devon and BBC spotlight the following day. Nor my anger at having been informed by social media before receiving the official company letter. I really hope there won't be further problems and we can all get back next year. Currently the elite divers are training in Southampton and London but everyone else is unable to dive as there are no local centres with boards.
We managed a few trips away within the South West as our other holidays were cancelled like so many other people. But a trip to Dorset to stay with my aunt and then a few days away in Bath last month really cheered me up.
Last week I was able to get a few ski lessons in at Tamworth snow dome with DSUK (Disability Snowsport UK). They are such a great crowd and have really helped me get used to outriggers which has really improved my balance and skiing. It was so good to get back 'on the slopes' even if it was inside. We have decided to cancel our ski holiday at New Year but fingers crossed we can still go in March - has anyone else ever skied with outriggers? Would love to hear from you!
I'm so hoping to go up north again to ski and also visit family and friends once this second lock down is over. But who knows!
I do keep busy doing various things but I was really starting to feel down about having nothing specific to do then a few weeks ago I was offered a job! I was so excited to hear from the University where I studied offering me a part time job in one of their admin departments. My main job is assisting another ex-student with the University own Covid Track and Trace system. I've only recently started and it was quiet with Reading week and many student returning home. But many also self-isolating on campus. I suspect the next few weeks will get busier and already the new lock down rules are baffling everyone and we have so many student’s questions. I work with a great team and even though I am only in the office 3 days a week, we have a laugh and it makes the job fun, the other 2 days I work from home which is also good as I don't have to get up so early!
I've also started driving lessons again with an instructor who teaches in an adapted car. I have my theory booked for 2nd December the day we are supposed to come out of lock down so hopefully that will go ahead. Sadly, my lessons have stopped but I'm practising with my dad.
Anyway that's all for now. Stay safe everyone and remember there's always someone to talk to.
Gavin's entry - World cp day 2020
October 20, 2020
Type of CP:
I was born with ataxic cerebral palsy which affects my speech, balance and coordination. I communicate via a communication device as I'm unable to speak. I also use a walker day-to-day to help me get about.
In my early years, I was too young to understand my disability and what it meant. I was aware that I couldn’t speak but didn’t understand why. I was one of those kids who wanted to try every sport imaginable so I remember getting quite frustrated when I couldn't participate in sports the same way as my friends. However, my family and those around me helped me to see my disability didn’t mean that I couldn't be involved, it just meant that I had to do things slightly differently and more importantly, I could still have fun.
I was incredibly lucky to have a huge amount of support throughout my school years. This always made school a lot less of an isolating experience for me. I found as I got older, it became increasingly harder to make friends with my peer group. As for exams, I struggled against the very inflexible system which didn’t accommodate for my needs. Having said that, I am proud of the grades I did manage to achieve despite the challenges I faced.
16 - 18:
At the age of 16, I became Head Ambassador for CP Teens UK. This was a proud moment for me. In this role, I feel I have grown in confidence when discussing my disability which has enabled me to raise awareness of cerebral palsy and the challenges we face. Hopefully by sharing my experiences, I have inspired others to share their experiences too.
Going Into Adulthood:
Going into adulthood can be an especially challenging time when you have a disability. However, it doesn't need to be. My advice to anyone going through a transition in their life is just to take one step at a time. That is what I'm trying to do.
Georgia's Entry - World CP Day 2020
October 06, 2020
Type of CP:
I have Spastic Diplegic Cerebral Palsy with ataxic/dystonic features. I was diagnosed at 18 months old.
As a child the house was full of toys, but little did, I know that my parents use to buy toys purposely to improve my fine and gross motor skills... I thought it was just a coincidence when I played with a toy during therapy and then I'd magically get a new toy a few days later! When I was younger, I didn’t really acknowledge my disability my earliest memory of feeling different is not being able to run around at nursery but apart from that I never had any worries.
Well on an embarrassing note I was never not confident I got up and danced a solo contemporary dance even though I couldn’t dance because that didn’t matter what mattered was that I enjoyed it! The gap between myself and my peers got bigger at school for example when I was a teenager, I didn’t want to accept that I couldn’t go ice skating on Friday nights just like my friends. I’d say my teenage years were the hardest as I understood the challenges, I’d face more but then that’s what made me realise that I wanted to turn these challenges into something.
This is the stage that I started to feel more confident about my disability, I started talking to other disabled people and connecting with people via online communities. I was actively speaking about my disability on social media, which is something that I’d never done, and I started to view my disability as a strength.
Going into adulthood:
Going into adulthood is scary as I know that I’m not going to be as independent as I want to but I know that I am going into a career I love and that I’m very passionate about so I’m ready to see what is in store. Yes, they’ll be challenges and tough times, but it only makes it more worthwhile.
July 31, 2020
Hello, it’s so good to be back blogging for CP Teens!
A few weeks ago, I made a video for CP Teens about meaningful occupation and occupational balance as it is so important during this time.
Yes, things are slowly getting back to normal, but some people are still shielding or too anxious and I just wanted to remind you that it’s completely normal to feel that way.
To help you see this I am going to use a model commonly used in occupational therapy called The- Person – Environment – Occupational Performance Model and remind you why charities such as CP Teens UK are so important during this time.
We interact with the environment by carrying out tasks and activities for example you interact with a racetrack by running, this interaction then improves our well-being and quality of life. However, over the past few months these interactions have gone. Meaning that this can impact our wellbeing as by you not going to the racetrack, you’re not interacting with particular environment and therefore that has an impact on your occupational performance. Yes, you can work out in the home environment and some may go for a run into the park, but your occupational performance won’t be the same.
Another example closer to home is me, I sit here writing the blog and the deadline is quite a while away but I’m writing because my studies have stopped for the summer, I’m bored because I don’t have that meaningful occupation to keep me going. Alright I can now go out to my local shopping centre and to a restaurant if I want to but as someone who’s more vulnerable, I don’t feel ready.
My point is, it’s completely normal to feel down during these times, however there are ways to manage this and factors that you can control!
For example, an extrinsic factor is something outside ourselves like social support and relationships. I get that you’re not seeing your friends and that being alone is hard, as well as everything else but there are alternatives!
The CP Teens UK and CP Sport Virtual Coffee & Chat is on Thursday Mornings at 11:00 am. I know it’s not the same as physically seeing your friends but I guarantee it’s better than not seeing your friends at all.
An intrinsic factor (so something internal) is sleep. It so easy to mess up your body clock in lockdown and don’t get me wrong I haven’t missed the 6:30am starts but I’ve still tried to maintain a routine and make sure I get the sleep I need to function!
Most people’s occupation performance will have changed and that’s completely understandable and not necessarily a bad thing if you’re still being productive and having occupational balance but it’s important to make sure you carry out occupations and maintain a level of performance.
I know it’s hard as I say this it is the first week of the Summer holiday, and I’ve not been too busy and I’m already feeling it. But it’s really to maintain a routine and motivate yourself by a reward i.e. watching a film, ordering a takeaway or going for a walk as then you will feel a lot better. I know now that I’ve wrote this blog, I feel a lot better about myself.
I hope this was useful?
Please let me know how lockdown has impacted on you and what you did about it.
Thank you for reading,
Duncan, E. (2011). Foundation for practice in occupational therapy. (5th ed.). [Online.] Retrieved from https://www.dawsonera.com/readonline/9780702046612
July 17, 2020
Hope you are all well!
It seems like a lifetime since my last blog, given the current situation with Covid 19. I have not been enjoying the last three months because of lockdown, feeling isolated and not being able to see anyone and go anywhere which I was used to doing on a regular basis. I normally have PA's supporting but we decided to shield with just my parents looking after my needs for four weeks, which was enough for me!
We phased the PA's coming back with PPE and although not quite the same I did have more independence back.
I used the time to sort my house out like going through all my cupboards to see whether I needed to recycle stuff that I haven’t used for a while. I like everything in order neat and tidy, I am a bit OCD about this sort of stuff and like it all organised, so used the time well.
We also decided to change the way I had my PA's work and how the house was set up for them to support me. I moved their workstation out into my Art Studio, so that they can catch up on paperwork and stuff away from my space, and I now have my dining area back. We invested time in technology and moved all of the PA task list and reminders into an app based system, which has worked really well, and my calendar that was a large visual monthly calendar again into an app. This together with some other stuff we moved to Apps has meant my home feels much more like a home and I can manage my staff better with the help of my parents remotely.
So with little else to do apart from my normal training programme, despite Tokyo being moved to next year, I thought it would be good to get through some box sets. Whilst my mum and dad looked after my needs we watched Game of Thrones which was epic and amazing ..really enjoyed it.. and passed the weeks of lockdown.
I have been watching a lot of Disney Movies starting from movie number one and am now on number 30. I have also been watching Netflix House of Cards, Our Girl, Breaking Bad, Chernobyl and Spooks. I highly recommend watching any of these.
I have really missed watching all the soaps - Eastenders, Coronation Street, Emmerdale, Holby and especially Casualty as that was the highlight of my Saturday evening, I am also waiting for Britain’s Got Talent to return so I can see who is going to win. As you can see I am a big soap fan!
With all the new apps and technology we made the decision to upgrade things and I got a new I Pad Pro and the up to date I Phone which was well overdue.
In April I did a marathon ( 26.2 miles in 4 days) on my rowing machine in my gym singing along to ABBA and other stuff like captain Tom, and this was for the Dame Vera Lynn Charity which I am and ambassador for. I raised over £1700 which I was really proud of, it took a few weeks for the blisters to heal but it was worth it.
As you probably know Dame Vera passed away during the lockdown which was a sad day for the country. As I am an ambassador for her charity I had a TV interview with the BBC Breakfast and ITV National News about the support the charity provided me with when I was young. They came to my house and filmed me and my dad (Pa) asking questions about the charity, you may have seen me on TV.
It's nice to be able to start seeing a few friends and my boyfriend after weeks of shielding, lets hope we are over the worse and we can start to get back to the new normal and enjoy the summer.
Cat's Lockdown Entry
July 03, 2020
Well, I think we can all agree, the past 3-4 months have been very strange (to say the least!). I can honestly say I’ve gone through a rollercoaster of emotions, and I have to be honest, not all of them have been positive ones. Alongside CP, anxiety and depression are whether I like it or not, are big factors in my life. So sadly, I began to “go a little bit into myself” and did not feel like my usual self.
Over the past couple of years, I had really built myself up confidence wise and effectively had it all taken away in an instant. I know lockdown is a necessary evil to fight a pandemic, but I think most people would somewhat agree that lives have been put on hold.
I’ve also been without physiotherapy since a little before lockdown “officially started”. Most that know me would probably (wrongly) assume that I might not need as much physio as I do but I can safely say that these past months have proven that I definitely cannot manage without. Although my mum and I have been trying our best ourselves at home, it is just not the same. Pain levels have been significantly higher as has my fatigue.
One positive that came from lockdown was the time I spent decluttering my room and making it a happier place for me to be. Long before lockdown my mum thought I would really benefit from the companionship of a dog, mainly due to the element of responsibility ad exercise it would bring me. However the caveat of me being permitted a dog was that my room was clean and tidy. I’m happy to say that after a lot of tooing and froing between breeds and whether to adopt from a rescue or get a puppy from a breeder, my friend and I found a happy medium when she came across three long haired Chihuahuas that were in need of rehoming, we jumped at the chance as we already wanted sibling and 2 of them were half siblings! My best friend discussed with the lady and they determined that Beau (my dog) was the most suited for me, with temperament and personality being exactly
what I could handle as a first time dog owner and someone with a disability. My fried opted to take the other two Chihuahua’s, meaning they’ll all still get to see one another!
I’ve had Beau since the 16th June, and she’s been adjusting quite well and I’m glad she was already house trained at 1 year 9 months. She is beginning to play with me, and I aim to walk her twice a day. It’s already pretty clear she has adapted to my disability, for example, not passing me on the stairs and walking with me when I’m feeling slow (though I’m never sure if she’s just tired too)
My cat Cassie, at 18 years old currently tolerates her whilst Beau appears desperate to be his best friend. I’m also already finding myself better off with a routine and regular exercise. Having Beau to focus on has really given me motivation to “get up and go”.
I’m also back at my retail job as a supervisor. I am not entirely happy about it, but I really need the money. My modelling jobs got put on hold too so that was a huge let down for me as I really miss my creative outlet. Hopefully, I can get back to modelling soon as I really, really miss my friends.
Keep safe everyone.
Gavin's Lockdown Entry
June 19, 2020
I hope you are all well and staying safe. I know many of you will be shielding and self isolating during this period so I just want you to know that I am thinking of you. CP Teens UK are running weekly catch-ups (in partnership with CP Sport) and running a number of virtual events - details can be found on social media. Please feel free to join in and spread the word to other service users who may be interested in participating. It's more important than ever that we stay connected with one another and help each other through this difficult time.
When I was thinking about what to write about for this blog, I was keen to share something which hopefully will be useful to you during this time particularly if you are student and wondering how your study might look like in the future...
It was this time last year when I wrote a blogged about finishing school. While the prospect of moving on to a new chapter in my life seemed exciting, I remember being unsure about what exactly would come next especially as I didn't really know what I wanted to do. This was why I decided to take a gap year to give myself time to explore the options available and also I had the World Championships in Dubai to train for - that had a pretty big influence!
Fast forward 12 months, I feel more assured about my plans for the future. I have recently decided to start my undergraduate degree with the online learning platform Open University this coming October. I have opted for the Open degree which allows you to personalise your degree by selecting various modules across the 3 years to suit your interests and needs.
At the start of my gap year, I wasn't considering doing my university degree with the Open University. I was very much focused on still going to a physical university, something that I had always wanted to do. Last September I had applied to a handful of physical universities to do International Relations. Despite being successful in receiving a couple of unconditional offers, I eventually reached the decision that attending a university campus wasn't going to fit in with my current lifestyle as I would have likely needed to move away from home, which I wasn't keen on doing, and I also had concerns about how this would impact on my training. As hard as it was to make this decision - walking away from something is never easy - I knew it was the right decision to make.
After deciding not to go to a physical university, I knew I still wanted to have the opportunity to complete a undergraduate degree and the Open University appealed as a great alternative. I have studied with them before when I was given the opportunity to enrol in a finance module as part of my sixth year studies. I really enjoyed being introduced to online learning and found it a refreshing change from the pressures of the classroom. What I like so much about the institution is the flexibility offered. Although an undergraduate degree is usually 3 years, you can take longer (up to 16 years) if required to enable study to fit into your schedule.
Recently, I have started a part-time job as a Sports Development Assistant with my local council so the flexibility the Open University will allow me to continue to work whilst starting my degree. As they often say, as one door closes, another one opens.
I would definitely recommend checking out the Open University to any student. It's not really an university option discussed in schools which is a shame because I think many people could benefit from this way of learning. I feel it's even more important especially during this time to make students aware that there's more than one way to gain a university degree.
Maddy's Lockdown Entry
June 05, 2020
I hope everyone is still keeping well and safe. I'm sure lots of new hobbies have been discovered during this lockdown. I've embarked on a couple of courses - photography and digital marketing - so I've been keeping busy.
I’ve also had a busy few months with preparing virtual speeches and job interviews. Currently, I was supposed to be in America as I had been offered a job as a Diving Coach in San Diego – when we were out there last summer, we met up with the diving coaches and they were very keen to have me go out and work with them. Sadly, this hasn’t happened but I am hoping I will be able to do it next year.
Speaking of last year…I can’t believe it has been a year since I finished University! Wow it has gone so quick!
I hope everyone is coping with restrictions having been lifted. We live in a very popular area on Dartmoor and at the beginning of lockdown it was peaceful and quiet, which meant I could go out for a walk every day without having loads of people and cars about. Since the lockdown got lifted a little bit, people have flocking in their thousands (no joke!) and disturbing us and the beautiful wildlife that have homes here. We have been in contact with the police so many times but they don’t care and won’t do anything. We are just left on our own and have to put up with the abuse we get if we see people parked on double yellow lines or moving cones out the way so they park in a space they are not allowed to park in!
It has been so dry on the moors without rain and people have been asked not to light BBQ's but the requests are ignored and we've had BBQ's lit and people swimming in the reservoir, which is actually for drinking water (yuk!). I cannot believe there are so many ignorant people about and social distancing is certainly not something they take any notice of as there have been so many parties around our beautiful reservoir and loads of rubbish left behind.
It hasn't been a great few days either as one of my Labradors passed away on Monday. It was all quite sudden but she died peacefully. It has come as such a shock to us as although she was 12, she seemed very fit and healthy. We are all heartbroken and her daughter, Roxy, who is 6 is missing her so much.
April 03, 2020
I can’t believe we’re on the 4th month of 2020! This year is going quite quickly. Christmas seems ages ago but we had a lovely time with friends and family.
At the end of January, I was back and forth to Birmingham for 2 weeks – I had adaptive ski lessons and I was so excited! As you have seen in previous blogs, I go skiing every year with my parents and a group of our friends and this year I wanted to try something a bit different. I’d come across Sit-Skiing when researching for my Dissertation at University last year and at the start of this year, we found that the Snowdome in Tamworth offered these lessons with Disability Snowsport UK.
My first and second lessons was in a Sit-Ski, it took me a while to get used to it as I wasn’t used to the feeling and it felt very weird going down a slope sitting down. I was first being ‘bucketing’ down the slope – this meant that my instructor Liz was standing right behind the sit-ski and steering the Sit-Ski down the slope whilst I indicated the turns by leaning to the side. After a few runs of this, Liz attached a tether so that she wasn’t directly behind me and that it was up to me to create the turns, but she still had some control. This is found rather difficult as I could create small turns but when I created a bigger one, I would topple over as I didn’t have enough core strength to get myself back in the middle – the second lesson was better than the first as I didn’t topple over as much.
For my third lesson, Liz suggested that I try Four Track Skiing – this is on normal skis but instead of poles, you have outriggers which have little skis on the end. Duncan was my instructor and I really enjoyed this type of skiing.
We then found a ski-school near St Anton in Austria where we go skiing at the beginning of March to teach me and Tamworth were very kind and lent us the outriggers as the Ski-School didn’t have them.
I had a great ski instructor – Gemma, and she improved my confident loads with the outriggers – I was skiing more parallel, I was more balanced and I felt more confident as well as going faster down the mountain!
My aim for doing this was to ski with the rest of the group and to try different runs. I had one skiing day with the group this year. The weather wasn’t always great so I didn’t venture as far as I would have liked plus I was still getting use to the outriggers.
Because the Coronavirus was in St Anton half way through the holiday, we unfortunately had to leave 4 days early – it was a nightmare getting out as the announcement that we had to leave was very sudden and we only had 2 hours! Still it was an amazing holiday with friends from the UK and Austria.
Now, I can’t ski, I can’t dive, I can’t work and events I was supposed to speak at have been cancelled. But I am keeping myself busy – writing blogs, I’m also writing a book and also looking for German courses online.
Hopefully this will be over soon and we can get back to doing what we love – can’t wait to get back on the ski slopes and diving boards!
Stay Safe everyone!
March 06, 2020
I hope you’re all well, I’ve turned 20 since I last wrote an entry. Turning 20 was a pretty big milestone as I’m no longer a teenager and on reflection, I have a few thoughts that I wanted to share with yourselves. As I’m getting older, I’m becoming more aware of the effects of my disability and therefore I have more of an understanding of what is classed as ‘normal’ for a person of my age…
I’ve accepted the fact that I’ll never be totally independent and I’m fine with this I really, I am. But what will be my independent? I’ve previously started a new role-emerging occupational therapy placement and it’s been great for my confidence because a role-emerging placements works slightly different to a traditional placement and therefore, I don’t have my supervisor peaking over my shoulder all day every day, which I’m enjoying. On this placement, I am feeling a lot more independent - I mean of course I have to keep my supervisor updated with what I’m doing but most of the time it’s just me and I’m quite liking the control as it’s something that I’ve never experienced before.
Over the years, of course, my independence has improved for example I don’t need help putting my shoes on anymore and I know that I’m going to get more independence when I pass my driving test. But when I pass my driving test will that be it, will I have achieved my maximum independence? I mean, I only feel more independent on this placement because it is not as physically demanding as the ones I’ve done previously. If I get another physically demanding placement will my independence and confidence decrease?
When I move out and become a homeowner, I guess I’ll feel more independent. But this will be financial independence. I’ll still need someone to put my jewellery on and cut up my meal. Which is fine by me- 20 years of it, it no longer bothers me.
But, will going to work and asking someone to do anything physically demanding be my independent?
I don’t really know what my point is as you can tell by the multiple questions in this post. Whatever my ‘independence’ is I’ll be ok with it - I mean this time 3 years ago I didn’t think I’d be able to drive so who knows what the future holds and you’ve got to be optimistic. But I also need to be realistic with myself, I’m never going to be able to live totally on my own or be the greatest at manual handling. This is completely fine. I’d be lying if I said it’s something that doesn’t cross my mind in terms of future relationships I mean, imagine, going on a blind dinner date and then having to ask them to cut my food up - I hope that this never happens. I guess my point is that I don’t have to be totally independent to be satisfied with my independence. I know I have the potential to become more independent in terms of driving and my career, but I probably won’t gain a lot more independence in terms of my self-care occupations. But I’m happy with this and I know it won’t be much longer until I achieve my own state of independence. However, it can be hard to picture what this will look like as who knows what physical demands and unexpected battles, I may face…
Thank you for reading,
February 21, 2020
Happy new year! I can't believe we're now in 2020.
If you follow me on social media, you may have seen the odd video of me skiing. Other than that, I haven't really posted much about my skiing. After seeing the videos, a few people have asked me about it. So for this blog, I thought I would explain how I ski and the progress I've made.
Like RaceRunning, I got involved in skiing by chance. I first got the opportunity to try it whilst on a school residential trip during my last year of primary school. Skiing just happened to be one of the activities on offer.
While I was apprehensive about trying it, I was keen to give it a go. Even though I had some reservations (mainly because I had no idea whether I could actually do it without skiing into everyone and everything), I agreed to a taster session with a disability instructor that my school had arranged. To my surprise, I stayed upright for most of the session. I had so much fun. So much so, I wanted to have another go when I returned home.
From there, I started going for lessons at my local indoor ski slope. To begin with, it was a bit scary because it was my first time on real snow as it was a dry ski slope for the taster session. I wasn't very good. Also I fell numerous times (which didn't help!) but once I became more confident on snow, I remembered how much fun it was and I was able to progress to gain more independence.
I ski standing up. I was given the option of whether I wanted to stand or sit to ski. I chose standing as I felt I was able to do so however there is the option to sit ski if that is more suitable for you depending on your disability. Although I ski standing up, there is some equipment I need to enable me to ski.To begin with, reins were attached to my skis to allow my instructor to guide me down the slope whilst I gained confidence. I still could control my turns but the reins gave me the reassurance that if I got into trouble, which I frequently did, my instructor could take over and guide me back to control. I also have links which joins the front of my skis together to help me make a snow plough shape. Then there's the spacer bar which I use for going up the poma lift. This goes under my boots and keeps my skis parallel as I go up the poma lift. Finally, I use outriggers which are crutches with mini skis on the bottom of them. I didn't use outriggers when I first started but I tried them once and found they really helped balance me and made a massive difference to my skiing.
Gradually, I have been able to be not so reliant on the reins to guide me down the slope. If the snow is really good, I am able to ski without the links that holds the front of my skis together which I know is a scary thought but I have managed to do it a few times.When I first started, I never thought I would get to that stage.
It has become more difficult to ski as my training has intensified. Skiing compliments my winter training well: my core and balance has got much stronger as a result. However, I have to be careful that I don't injure myself and we take as many steps as possible to minimise those risks.
Skiing was never a sport I ever thought about trying. If I hadn't had the opportunity to try skiing on the school residential trip, I probably wouldn't have discovered it was a sport I could do. I'm really glad I did though!
If you are interested in trying skiing and live nearby a slope, please get in touch with Disability Snowsport UK (DSUK) for more info.