Hello everyone, I am Jack. I have Cerebral Palsy, and I have been a part of the Global Equality Collective for two years.
I want to talk to you today from the perspective of an adult with a disability looking back at the impact of strong parents.
This blog is for all parents of children/ young people with a disability.
What you do is so vital.
While at times, it might seem like you do not have the support or answers you seek, I promise you that the love and support you are setting for your child will create strong foundations for them to reach their full potential.
Parents of children with additional needs have so much strength and passion, when you have nothing left to give, you will always find the reserve.
I see daily - working with young people with additional needs - the importance that a strong support network can have on that young person. The young person flourishes because of the increase in the level of progress for that learner. The lines of open communication between parents and the education setting has a positive impact.
I would not be in the position I am to be writing this blog, if it was not for my amazing mum who fought to get me 1:1 support at primary school; a story that many parents can relate to as a fight and a battle.
I am sure every SEND parent is very familiar with. My mum was successful in getting me the support. Resulting in one of the fundamental bricks being in place. In addition, it was all the physiotherapy appointments, doctor's appointments, operations, and hospital stays to ensure that I have the best quality of life.
In addition, all the support while I was at University mum would get my shopping, make me food, do my washing and come and get me. She would always be the listening ear on the phone. In my personal experience, you can see how amazing parents can be for a person with a disability/impairment.
It is vital to remember that there are young people who do not have this experience - and do not have the same level of support.
As a result, demonstrating why educational settings, and those who work within them, are fundamental to these young people. To be their ‘safe person’, or their role models, or their mentors.
Again, highlighting the defining role an educator can play in a young person's life. It is so important to make sure education is inclusive, diverse, and offers equality to ensure that each learner achieves regardless of background and life circumstances. As an educator you may not change the entire world, but you have the potential to change the world for that one young person.
As a parent, you are there every step of the way for your children. I have got older, and I have needed my mum just as much - with support getting to and from work (as I entered my first full-time job) and mental health support (as I continued my mental health journey from earlier in my life).
My mum has been my rock.
I am sure that your child would say the same in their unique way to you.
I want this blog to be about celebrating the unwavering support of parents, carers, educators, and external support that is there to ensure that additional needs are not additional barriers and that while we are all about #SmashingStereotypes, parents and their young people are all about smashing expectations - and going above and beyond.
Next time you have had a hard day, or you are tired from looking after your young people, or you may have received some bad news about a piece of your young person's jigsaw of support - change the focus think about how many bricks you have laid in helping them to build that tower towards their future.
Here is a shout out to the superstars.
20 May 2022
Hello everyone, I hope you are well. When I last wrote a blog, I did not think life would drastically change?
The most devastating news has been that I have lost my stepdad, Nick, to a brain tumour two months ago. This has completely turned our lives upside down. We have lost part of the five-piece jigsaw. Nick being gone has left a massive void in the lives of everyone he comes into contact with. At Nick’s service, the one word that was used to describe him was a legend. Nick was such a big personality with a kind and supportive manner. He installed a great work ethic into us Nick believed in helping those that would help themselves. You honestly don’t think you can live after such a big part of your family is gone. It is about just muddling through and hold the good memories and always remember the wise words Nick gave us that I will carry forever. We are all doing our best. Grief is like the waves you can be on your back floating through the day, then something can set you off the undercurrent of emotion can grip you and drag you under.
My mum is being a tower of strength. I honestly don’t know how you are doing it. I love you so much you are amazing. We are with you every step of the way. Ellie and Maddie, you are both wonderful you are showing such grace and resilience. I know you will make Nick proud love you. Bill and Jo carry on learning the skills nick taught you in building and no not extended lunches, you will do amazing lads love you. To Nick’s children Dan Lou, and Matt you are wonderful people. I can’t imagine what each of you feels you have all the qualities of Nick, will live on through you and your children, and us. We are all so lucky to have had Nick in our lives. My heart goes out to you all.
In addition, my Nan is poorly, and hopefully, she can make a recovery. She has a broken hip and the discovery of lung cancer. Fingers crossed everything goes well at the hospital appointments Nan is not being downbeat about it which, is a positive.
They say that things come in threes. I think it’s more like 300 at this point. My delightful dad and I use that term hanging by a thread. Has decided to come after our house at our lowest ebb. That is the mark of the man pray on the vulnerable, safe to say that I am not coping well. Struggling with anxiety and the reawakening of childhood trauma. When the time is right. I will release a blog that will give you my story but enough time on that human.
In, summary my life is absolutely amazing. I am for sure living my best life.
On a positive note, I have all but completed my level three teacher training at work. My teacher has been amazing and so supportive. I have been blessed with my incredible family and friends both at work outside and online supporting me during this difficult time. I have finished another summer at college. I can have a lot of self-care and focus on myself with the external pressures of work and focus all that energy on myself. PositivelyCerebralPalsy has continued to flourish even with my new look of bleach blonde hair. I feel this has been my outlet to have a place I can express myself when I feel different emotions. Everyone has been so supportive. I hope to be doing more blog pieces and collaborations going forward as this is my passion. Some highlights that I have had is a few months ago I had a written piece published by TES, the number one education publication. I spoke at Diverse Ed on inclusion schools and the power of the collective, As part of the Global Equality Collective.
I have started physiotherapy working on my legs and back to improve my flexibility and movement. There have been some positives too.
Look after yourself cherish every moment
Hello everyone, I hope that your 2021 has started the best it can I hope you and your family and friends are healthy.
I just wanted to give everyone an update on what I have been up to this year. 2021 starting better. I feel better about myself. I was struggling after a difficult situation, which has been resolved. The result has left me with some things I need to work on for myself. I have joined a charity support group that offers counselling and support called Forever Ahead. I have met a kind and supportive group of people I have met. I have been welcomed into the group. I feel like I have received the warmest embrace possible.
I want to put myself first this year and build myself up by working on my mental health. I want to accept my cerebral palsy I feel like I have never explored it and see if this has anything to do with me not loving myself. In my view, I am so capable then I see a body that lets me down at 25 I feel so held back by my body. I think there are some contributing factors to my cerebral palsy and how I see myself. I face a conflict because I see that my disability has made me a better person. I have had opportunities and been lucky enough to meet people due to my disability, such as blog and Instagram which, have been so much fun and given me so much happiness.
Other issues are personal, I want to be making the best choices for myself. I want this year to be my happiest yet. I plan on putting in the hard work this year to have a brighter future for myself. I feel that I am heading in the right direction. I am more aware of self-care and the steps I can take to help the situation. I am lucky to receive support from my family, friends, and the support group things are looking up.
Work was very full-on before Christmas I was happy to have a break. It has been a good start back at work. I have been doing some teaching and making resources around kindness and self-esteem for our learners to remind themselves how important they which at this time is vitally important. Creating these resources is boosting my confidence both personally and professionally.
In terms of Positively Cerebral Palsy, I have been doing a lot of work in the background. I have been working with We are Motivation. A charity that focuses on international development within Africa, providing support to the people in Uganda when they will be setting up and running sports clubs as they aim to change negative perceptions of disability within the community. We Are Motivation, run a parent and carer group in Uganda and Malawi to support the parents in supporting their young person. In the U.K We Are Motivation supply sports wheelchairs for clubs to try wheelchair sport. I have written a couple of pieces for them that I can’t wait to share when the time is right.
I am continuing my work with Listen Up Wiltshire. The project involves a group of young people who are working on upcoming social media campaigns, which will be revealed in good time. The lockdown experiences piece that I wrote along with the other group members has been produced into a podcast. This aired on BBC Wiltshire. I will post the clips in due course.
I have joined the Global Equality Committee this is a group of people who work on diversity within the education business sectors and generally within society. I have joined the inclusion team. I will be working with them in the future when the opportunity arises, which will be very exciting.
I have learned that doing less is vital for your well-being creating room for me to breathe and putting more focus on my own needs this is so important.
Thank you for always supporting me and being amazing I know that my blog has been quiet. I hope to add more in 2021. I may take breaks when I need the time. Thank you for understanding. I am ready to embrace the year ahead and hopefully continue the growth of Positively Cerebral Palsy and my self-growth.
Sending positive vibes your way
Hello everyone I hope you are all well, I know with the second lockdown it can be a difficult time make sure that you are kind to yourself and you reach out to your family and friends or other support services.
November is CRPS awareness month therefore I wanted to raise awareness about the condition so thought I would ask my friend Anna to tell her story about her life living with the condition so just want to say Thank you to Anna you are a amazing friend.
I’m Anna, I live in Scotland not far from Glasgow. November is CRPS awareness month hence why I’m writing this. Jack and I have known each other years now although living at opposite ends of the country.
Before rambling on about myself best to start with what complex regional pain syndrome actually is. “Complex regional pain syndrome is a condition that causes severe pain which won't go away. It usually affects just one arm or leg and often follows an earlier injury to the limb. However, the body's reaction to the injury is much stronger than usual and may affect more of the limb than the original injury did.
Doctors sometimes make a distinction between two types of CRPS:
To follow Anna's Journey please follow her on Instagram https://www.instagram.com/life_with_crps/
University Experience Blog
Hi everyone I hope you are all well and safe and this is my second blog post.
have attended mainstream education at every stage of my academic journey.
A little about me, I have always enjoyed sports and I mean all sports rugby, tennis, and boxing. My main passion is football. I am a massive Arsenal fan. I played Boccia at school, getting to the national finals in Nottingham, when I was in year ten. I love rock music. I love video games, when I get the opportunity to play them. I enjoy spreading positivity and now I am working on PositivelyCerebralPalsy, where I am sharing my journey with my CP, and going to university was a turning point in my journey.
I finished college with the equivalent of triple-A* in my BTEC level three, and considering I was the first student with special needs to study the course, I was teaching the other learners how to play Boccia. Then we had a unit modelled around an inclusive sport that the college continued to run after I left.
Now it was time to pick a university, my three options were De Monfort in Leicester to study sports history, for sure an interesting course but the course was impractical, as it was split across Leicester which would have meant using public transport, which would have been difficult. The distance from home was not the right pick; was the distance from home being a four-hour drive for my family and I needed them close enough if I needed help they could get to me. Shame as it would have been good to have been there when they won the league.
Brighton was another option but in the end, I wasn’t sure about the course. I went to the University of Bedfordshire open day and from that moment it just felt right. Logistically, it was perfect being an hour away from my family, as I said they could get to me if I needed them, but I was able to be far enough away that I could have my independence.
I mean my mum still got my shopping and did my washing so thank you, mum. The course seemed the right fit because it was a natural progression from what I had done at college and covered a wider breadth and depth of subjects and material. I had an amazing tutor in Amanda Jones, who was the course leader of Sports Studies. Amanda was so accommodating throughout my time at university. I was so lucky to have someone so understanding of my disability when it was required but also my mental health needs. I would have my down days with assignments and I would have her support to apply for extensions. All the teachers were incredible.
All the support I received at university from student services and the personal tutors I had in Anne and Dee, and my note takers Tony and Stuart, and the amazing library team I couldn’t have done it without them. I would recommend the support that is on offer at the University of Bedfordshire.
I wasn’t much of a clubber. I went on the odd occasion and had a royally good time, but I much more enjoyed going for a drink with friends. I would say that’s one of the things that I enjoyed the most, was the social aspect of meeting good people, and having movie nights with my flatmates. Even though I didn’t fully take advantage of going out because I was committed to my studies. I did it in my style and that was brilliant because Bedford was full of pubs and nice scenery.
My course opened up so many doors for me to have some of the best experiences of my life. Firstly, I went to Club La Santa, which is the number one sports resort in the world. I went to volunteer in my first year on the Volcano Triathlon, which is an amazing event. It’s where 500 athletes of varying ability there can be winners of Ironman Hawaii, one of the most testing endurance races for people that are doing their first triathlon, to people that have overcome illness and they have a new outlook on life and they want to compete. This is one of the most amazing places I have been with every sport you can dream of and a family feel around the resort and the ability to push yourself out of your comfort zone. I completed an organisation report on how they run their business model and analysed it around the volcano Triathlon. I went back five years in a row. What an amazing place!
I was also lucky enough to be a part of the University of Bedfordshire wheelchair basketball team that used to train once a week, but was able to compete in the university championships in Manchester for the weekend. A great sports lighting quick, and so competitive end to end. We had a great team spirit. It was an amazing feeling to feel included and everyone was on an equal playing field regardless of disability or not and everyone could have a great time.
My Masters in Physical Education and Sports Pedagogy was a decision I took because I enjoyed learning and gaining new knowledge so much I thought yes it is another year of study. I believed that I was capable to succeed on the course. One of the highlights was being taught occupational socialisation which meant I was really able to reflect upon my experiences from school these were really powerful lessons, I understood how my journey in education had shaped me and why I wanted to become a teacher. I was often not able to join in with the other students and I would be on the playground doing adapted sport but I wanted to be with my classmates and not left to the side. I wanted a more inclusive PE lesson then and I still want to break down barriers and make PE enjoyable for everyone.
My dissertations became biggest opportunities have been in my two dissertations. They have been based around my experiences as a student with cerebral palsy, and my love of sport and physical education. My experiences at secondary school were what informed my studies, my undergraduate title was: Is Physical Education inclusive or exclusive of students with physical impairments? This research then led to discussions of the use of technology. My master’s dissertation naturally progressed to: How can technology influence teacher’s pedagogical practice within Physical Education for those with physical impairments? This was an interesting study on how technology can make a difference to inclusive physical education. I hope to continue my journey towards a Ph.D. in the future.
I had a fantastic experience at university. I went as a young person and left a man, where I grew and learned independence and self-growth as a person with cerebral palsy. I feel so lucky to have such a supportive family to help me through my journey. Now I have left and I have had connections with the university to keep in contact and work within circles of disability sport. I believe that university was a fantastic opportunity.
Hi, I am Jack. I’m 24 years old, and I live in Essex, England. I was born with Spastic Diplegic Cerebral Palsy. I was born on the 28th of September,when I was meant to arrive on the 25th of December. I always say I didn’t want one set of presents. I weighed 1lb and 15 ounces, the same as a bag of sugar, for perspective. I never thought I would be writing this,well what a cliché opening line, but honestly I didn’t think I would be writing this as a blog post, because I had no intention of writing a blog. Sounds like a great start, but let me explain. I had an idea to make an Instagram page to share my experiences, because I had not seen any pages talking about Cerebral Palsy,however, now I see creating a blog was the natural progression. Here’s a little bit about myself. I attended mainstream education, all the way through all the way up to four years at University of Bedfordshire. I have a Masters degree in Physical Education and Sports Pedagogy. I have never let anything stop me in my life. I have built up resilience and confidence, I mean this is a display of that, putting this out there. I’m going to be upfront and honest, there are good days and bad days. While it all seems rosy, there are negatives too, after all, we are human. I have challenges just like everyone else, escalators, the London transport system, and carrying a cup of tea,which I’m still working on. I love sports and I believe physical education should be an inclusive and enriching experience for all. The power that physical education has can bring people together, it can create friendships, and teach strong values and morals. It also keeps you healthy. I love to travel and watch football; I’m an Arsenal fan. I also love wheelchair basketball and I played on the university team, University of Bedfordshire. I love music, mainly rock and metal, and anything with good lyrics. I want to enjoy life as much as I can, and if I can help others along the way, that will be the greatest part of my life. I work as a teaching assistant at a college in the South East of England, where I support students with additional needs on their own journey to find employment and life skills. I love making others happy. I love spreading positivity and feel that is one of my biggest qualities. I believe from time to time you are allowed to give yourself some credit and accept your disability. I want to share my journey of having Cerebral Palsy and hopefully help other young people, or at the very least, put a smile on a few peoples’ faces. Fair warning, I love quotes and will be posting some. I have built up a small, but growing group of followers on my Instagram account, which is called PositivelyCerebralPalsy (Shameless plug please give it a follow). Thank you to everyone who follows it already. I would say that I am an ordinary person, but I believe in the power of story and the shared experiences. I believe this has the power to create extraordinary results, and form connections that can hopefully change peoples’ lives. I have been lucky enough to see this first hand. I have given speeches at black-tie events talking about how sports has changed my life, the importance of inclusion, and the opportunity to break barriers down. I have had the opportunity to play sports that most able-bodied people can each day. What I want to achieve from this blog:
1. I want to help and share my success and challenges to help other people with Cerebral Palsy.
2. I want to give support to families if they are unsure about their young person and give my personal experience as a guide.
3. I want to create a community and spread positivity to make peoples’ lives happier. I want to say thank you to my amazing family and friends that have supported me through the good, the bad, the ugly, and everything in between. Without you, I wouldn’t be in this position; you are amazing and I love dearly. I hope everyone is ready for this adventure on whatever path it takes us. Wishing you all the best and sending positive vibes your way.