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Cerebral palsy: changing the narrative

Challenging assumptions

A young man reached out to me the other day, wanting to make impact in the lives of children with special needs.

He kept asking, “What can we donate to help children with cerebral palsy?” Instead of giving him an answer, I invited him over for a conversation.

I asked him why he wanted to donate to children with cerebral palsy and why he is into philanthropy, since that it not a very common thing with young Ghanaian men.

He said: “I had a friend who got paralyzed suddenly, doctors said it was cerebral palsy .* I really cannot connect the dots on what the doctors are saying but it occurred to me that I could reach out to people like my friend and help out.”

“I do not know how many of such people are paralyzed and forced to beg on the street because of that, I want to make an impact.”

I could see that the young man came with an open heart and a clear intention but needed to know more about the category of people he had chosen to help.

So I provoked him a bit, I asked him, that supposing he donated bags of rice, bails of clothing, packs of diapers and wipes and many other things and I call him after a few months to say that the things are finished and I needed more what will be do.

He said, “I will be upset,” then I asked again, “How do you expect me to do anything when you have committed yourself to supply me with all I need till I die?”

He seemed confused by my line of questioning so I told him that I appreciated his commitment to support children with special needs, but it could be directed in a more productive and sustainable way instead of just donating items to them.

A different way

The narrative on cerebral palsy in Ghana, most of the time has been “we are poor, we need food, we need diapers and the like….” It is mostly communication that is intended to draw pity to families raising children with cerebral palsy, with the aim of receiving handouts.

So the story has remained the same over the years, I gave birth to a child with cerebral palsy and I had to stop work and take care of her, now I don’t have anything blablabla which to me is not just pathetic but appalling.

Instead of working together to ensure that there are policies in place that takes care of children with cerebral palsy in the long term, many prefer being given some handouts, many are made to think that there is nothing that can be done except to beg. In any case begging has become a very lucrative business for some people in Ghana.

The other day someone pointed to me a beggar who had built a mansion out of his begging business, in fact many beggars on the street are able to recruit able bodied young men and women to push them under the scorching sun, it is very lucrative I learnt.

Spirit of entrepreneurship

Anyway back to the age-old narrative, even in Ghana, I have seen mothers of children with special needs who have made tremendous impact.

One such mother is Mrs Serwaa Quainoo who started the Autism Awareness, Care and Training Center which provides training and educational services to children with autism in order for them to function more effectively in society.

Aunty Serwaa as she is affectionately called has made so much impact in terms of creating awareness on autism, back in the days and even now, I use to see her on TV talking about autism.
Her organization serves many families raising children with autism.

Another person who inspires me outside the borders of Ghana is a lady by name Shona McDonald, mother of a lady with cerebral palsy turned entrepreneur because of her daughter.

She started an organization called ShonaQuip. Shona, at the age of 19 had a daughter, Shelley, who was born with cerebral palsy (CP). At the time the only wheelchairs available were for adults and even these were only designed for temporary transportation within hospitals. “Shelley was given a foam-padded folded cardboard insert for her pram with a large piece of webbing to tie her in. I learned that once CP children outgrew their prams the option was to tie them into hospital wheelchairs,” she explains.

Refusing to accept what was available, McDonald poured over books on CP sent from a cousin in the UK. What she noticed were the wheelchairs. “There was an amazing photo of a chair from Sweden so I asked my cousin to buy the motor and wheels from England and bring them over.” Parts in hand, she approached the Biomedical Engineering Department at UCT where, working from a photograph, she and Mike Price built Shelley a chair.

The motorized chair solved Shelley’s mobility challenges so McDonald moved on to other issues, developing communication cards so that Shelley could tell her parents what she wanted, and modifying toys so she could play. Being involved in parental support groups, it was only a matter of time before people started requesting similar products for their disabled children, and a business was born in McDonald’s home.”
I think that our needs should lead us to innovations, inventions and solutions and not the other way round.

A movement for change

The Special Mothers Project, an advocacy and awareness creation program on cerebral palsy, is starting training seminars for various stakeholders in Ghana to advocate, deepen knowledge and create a change.

Our first training seminar scheduled to take place mid-October is on the theme: “Entrepreneurship Opportunities in the Special Needs World – Changing the Narrative”

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project said “I think that the lack of support services and systems for families raising children with cerebral palsy is what pushes many into begging and pity partying.”

Ghana will join the rest of the world to celebrate World Cerebral Palsy Day on 6 October, the day celebrates the achievement of persons with cerebral palsy and their care givers.

Mrs Awadzi said “It is about time we change the narrative on cerebral palsy in Ghana. We want to make cerebral palsy a “celebrity”.

LINKS

* NOTE:  Cerebral palsy is a disability that is acquired before birth or soon after. An injury causing paralysis later in life is not classified as cerebral palsy.

 

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No limits for young people with CP in Canada

The program

The Youth Without Limits support group addresses the intersection between disabilities and mental health and is designed for youth and young adults aged 13 and up. The group is facilitated by youth with disabilities specifically for their peers with disabilities, recognizing that acceptance and understanding are key to providing adequate knowledge and support from one person living with a disability to another.

“Throughout our life time we have felt that there has always been a gap between the able-bodied community and the disabled community with regards to understanding, interpretation, and communication.

Our goal is to bring the disabled community closer together and create a sense of acceptance, comfort, belonging, and pride in ourselves and our disability as community.” – Program developers

How it works

Youth Without Limits is a free inclusive program that is open and accessible. To increase accessibility, we provide refreshments and sign language interpretation as needed. Sessions take the form of an open-ended discussion around a topic, often with a presentation to engage participants or a guest speaker. The goal is to provide a safe and welcoming space for people with disabilities to socialize, learn from, and support one another. We want youth with disabilities experiencing stress, anxiety or depression to know that they are equals in society.

Some of the topics covered during the Youth Group sessions include: Coping with Anxiety and Depression, Making Dreams Come True, Sex and Dating, Self-Esteem, Meditation, Recreation and Accessibility and Diet and Nutrition to Reduce Stress and Promote Better Health. One other topic that grabbed the attention of youth group participants was How to Quit Smoking and Tobacco Reduction via mindful meditation. It was so popular, we hosted the session twice with the help of Vancouver Coastal Health. We ask our participants for feedback at the end of each session via a survey and adjust the program accordingly.

All of this information was consolidated into a “best practices” report, to support the creation of similar peer support groups. The program coordinators also created a toolkit on how to run a peer support group, including power dynamics of a group, accessibility, facilitation and how to engage participants, tips for program planning and logistics.

Working together

The Cerebral Palsy Association of BC worked with many businesses and organizations including Vancouver Coastal Health, Lawson Foundation 5G Fund, Bridge Street United Church Foundation, Neil Squire Society, Coast Capital Savings, Hamber Foundation, Law Foundation of British Columbia, and Telus Vancouver to fund the youth group. We received municipal funding from the City of North Vancouver through their Child and Youth Initiatives program. We have also received directed donations through special events including our Life Without Limits Gala and annual Scotiabank Charity Challenge, and individual and corporate donations.

CPABC was also supported by the Burnaby Association for Community Inclusion, YWCA and PeerNetBC through in-kind venue rental. PeerNetBC also provided facilitation, resource materials and training services. Pacific DAWN kindly provided advice and consultation on running a support group. Anxiety BC provided a program presenter and support for presentations around anxiety and mindfulness.

There are also many volunteers that work tirelessly behind the scenes. Without their help to promote and facilitate the group, we would not be able to be so successful.

Key achievements

There have been many positive outcomes from the creation of Youth Without Limits. The group has up to 30 participants each month and at least 2 volunteers along with our Program Director that help facilitate each session. So far, there have been over 20 workshop topics successfully disseminated and discussed. Many participants are now suggesting topics and presenters for us to research.

Our participants have developed various skills such as leadership, communication and teamwork. It also reaffirms that helping others help the self. Participants report improved communications and self-advocacy skills, as well as increased access to services and supports. Through sharing their stories and listening to others, they are gaining knowledge and experience. This also helps relieve stress and anxiety as the participants realize that they are not alone in their experience.

According to our final report after the first year of programming, half the respondents reported significant improvement in all areas and half the respondents reported some improvement in all areas. These areas include: anxiety, depression, isolation, frustration, socialization, self-esteem and self-love.

Feedback from participants speaks for itself:

“This support group makes my long bus rides to Downtown Vancouver worthwhile. All my friends are in this group. I am happy to be a member as long as I can.”

“Overall found all sessions to be of value.”

“The support group has allowed me to meet new people and share my experiences with my friends. I also like that it’s confidential and that it’s a safe place.”

“I am grateful for this group and really appreciate the volunteers and staff who make it possible.”

Where to from here?

We plan to continue the program every month with meetings and workshops. We continue to source funding for special events and series on important topics affecting young people with disabilities and mental health.

LINKS

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Nick Schumi

Guest blogger, Emily Kachenko, meets the impressive young Nick Schumi from Adelaide in South Australia.

World Cerebral Palsy Day is a social movement, of, by and for the CP community. Its vision is to ensure that everyone with CP has the same rights, access and opportunities as anyone else. Let’s meet Nick Schumi who has been advocating for these things in the lives of people living with a disability for many years.

Nick is an Adelaide man who is passionate about empowering young people with a disability to reach their full potential. Nick has cerebral palsy and is qualified in youth and social work, specializing in the disability space. These days, among many other things, Nick is both an employee and participant of Immersion Therapy, with Determined2, a world first way in which people with injury or disability can have access to water based movement, with the use of SCUBA equipment, allows benefits like never before.

For many years Nick has been a keen contributor to advisory committees, advocating to have the voices of young people with a disability heard. Around 10 years ago, Nick signed up to attend a forum on the experiences of young people with a disability held by the Julia Farr Association (JFA Purple Orange) …along with only one other person. Disappointed by the low turnout, Nick offered to reorganise the event. This time 12 people attended.  At the meeting, fruitful discussions identified what was important to these young people and what services were and weren’t working. The forum also identified a need for a peer support program between people with a lived experience of disability. Nick says the program was needed as there was nothing similar available to help people live inclusive lives and develop to their full potential.

Unfortunately, it was the experience of many participants that while they were asked for their input at similar forums, the implementation of concrete programs to address the issues raised was less likely to happen. Nick was ready to change this trend. When the opportunity to implement the program presented itself, Nick threw himself into organising it.

After around two years of planning, Julia Farr Youth Mentoring was launched. This program offers peer-to-peer support for young people living with disability. The mentee (aged between 11 and 18) is mentored by a mentor (aged between 18 and 30) who also lives with disability. A mentor and mentee will catch up a couple of hours each fortnight to do things they are both interested in, such as watching a movie, playing video games, playing sport, getting a bite to eat or going to a park. Sometimes there are specific goals, such as practising catching a bus or transitioning from primary to high school or to life after high school. A mentee/mentor relationship can last between four and 12 months, or longer depending on the relationship.

After the hard work of planning, Nick was ready to be a part of the first mentor/mentee relationship and began by mentoring a young boy living with cerebral palsy. This boy was making the transition from primary school to high school, which involved leaving his friendship group as the new school his friends were attending was not able to accommodate him.

Nick was able to get to know the mentee’s family and tells the story of how after having dinner with the family for the first time the boy’s mother asked Nick if he had noticed that the boy had used his cutlery? Nick had noticed. The boy’s mother explained that usually her son started the meal using knives and forks but, due to dexterity issues and involuntary movements, usually asked someone to help him. The mentee finished his meal using his cutlery, with his Mum attributing this to the motivating presence of Nick, who was a little bit older, navigating a similar lived experience and relating to her son at his level.

Nick admits when first becoming a mentor he had some self-doubt, wondering whether he had something to offer. These doubts were soon forgotten, with Nick being able to help his mentee in practical and meaningful ways. This included getting the appropriate clearances to accompany his mentee to his new high school to help him make new friendships in his new environment. As Nick says, “not just talking, but doing”. This points to an added benefit of the program, with mentors also gaining a sense of achievement from their involvement. Mentors also regularly get together to learn new skills and to share their mentoring experiences.

Since this first mentor-mentee relationship there have been dozens of others. Nick is no longer involved directly with the program, (other than as a ongoing consultant for other projects) having passed on his knowledge and experiences to others, empowering them to continue the work of the program. Nick says the program is a success as the young people themselves are in control of its direction. Young people with a lived experience of disability continue to be involved in all aspects of the program ensuring it remains as relevant as possible.

When asked whether he has any tips for other people wanting to create a similar program, Nick says it is important to give young people with a disability the space to create programs which are meaningful to them. He also wisely says that it is important to get these programs right, as it is young people’s lives, after all.

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People with Cerebral Palsy are #justlikeyou

Charlie McMartin, a young man who lives with cerebral palsy, has a message he’d like to share:

“Bullying hurts people’s feelings and lowers their self-esteem. People with disabilities are just like anyone else. We just have greater obstacles to face than most people.”

From May 28 to June 3, 2017, the Cerebral Palsy Association of BC (CPABC) launched the #JustLikeYou campaign as part of 2017 National Victims and Survivors of Crime Week in Canada.

CPABC shared thoughtful messages and highlighted resources that can be used when faced with victimization. The campaign was shared through social media, transit and print advertisements asking readers to take action by joining the conversation using the hashtags: #VictimsWeek, #StopBullying & #JustLikeYou.

Three hundred thousand people in the Lower Mainland of British Columbia were reached through targeted messaging during Victims Week 2017.

Children and youth with disabilities are especially vulnerable to being bullied by their peers, according to CanChild Centre for Childhood Disability Research and Holland Bloorview Kids Rehabilitation Hospital. Reports show this trend also permeates into older age groups.

While many efforts have been made to increase acceptance for people with disabilities, new media and technology have changed the landscape for bullying.

“I think people are being bullied even more today because of social media and selfies that can be widely circulated,” says an anonymous member. “It is very difficult for young people to not be affected by social media and dating sites. The situation opens up a whole new set of challenges.”

CPABC Executive Director Feri Dehdar says, “People with disabilities are already strong and resilient and overcome many challenges every day. We believe that victims need to be resilient, but so do the witnesses. It’s a matter of mobilizing our thoughts and being part of the solution, not standing silently.”

The CPABC campaign encouraged children and youth to feel socially included by building their confidence and offering peer support. Bystanders are asked to consider being a friend to someone who doesn’t have support, and lead them to resiliency by helping them cope. Talk to your friends, family and loved ones. Express your feelings non-violently and share with those who support you.

It’s a matter of mobilizing. Supporting anti-bullying sentiments are only half the battle. If we want to #StopBullying, we need to take action.

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International study with cerebral palsy

In his second blog post for World CP Day, guest blogger Christian Karlsen from Norway talks about his experience as an international student in Australia…

I haven’t travelled much in my life, and when I have it hasn’t been longer than to neighboring Scandinavian countries. When you have a disability, or an extra need for security, comfort, familiar people or control in your life, it feels easier to stay at home where all is safe and familiar.

Travelling may seem scary with the challenges we have in our lives, especially alone. I think that if we challenge our fear and chose to take the opportunity, we may end up rich in good experiences, great memories, and a better understanding of who we are.

My name is Christian Karlsen, I have cerebral palsy that is affecting my whole body and in addition diabetes type 1. I’m a psychology student from Norway who has just attended a semester at the University of Sydney, which is on the other side of the globe from Norway.

During my time in Sydney I took psychology, cultural and philosophical studies, and lived in a student accommodation building called Queen Mary Building in Camperdown.

Facing the fears

The thought of travelling for the first time alone across the globe was terrifying, but I knew that giving in to my fear would rob me of the opportunity to experience one of the greatest times in my life.

I believe that being scared or anxious is good, because it motivates us to plan ahead and keeps us prepared, but it can become a problem when we let the fear dictate what we do in life. The fear can be quite convincing. I’ve been convinced by it many times in my life, but most of the time the fear isn’t based on the reality of the dangers and problems that may arise, nor truly based on our ability to solve them or receiving assistance.

I knew my fear of going to Sydney wasn’t based in reality, and that I overestimated the dangers and problems that I could face during my time in Sydney.

That isn’t to say that I wasn’t scared when I lived in Sydney, or that there weren’t any unforeseen problems. The population in Sydney is 5 million, the same as my entire country, and I lived almost in the center of Sydney. This led to many complications for me at first. Everything from travelling the city, buying groceries, going on trips outside of Sydney or knowing what to do in case of an emergency.

Making connections

Luckily the Queen Mary Building arranged many social interactions and activities, and when you are an international student it gets easier to find friends in other international students. I found several Australian friends, which I feel is because the student community in Sydney is very friendly. When it comes to my disability, I didn’t feel it was an obstacle. Maybe it was on a rare occasion, but mostly people looked passed it and focused on who I am.

We learn and adapt to challenges that comes along the way, and during my time in Sydney the challenges were solved. I figured out how to live comfortably in the city. Some of the first places I went to in Sydney were places I could either ask people for assistance, or be directed to someone that could give me assistance.

Some of them worked at the student accommodation I lived in, or at the university disability and information services. An example of assistance I needed was getting to and from my classes, which was challenging for me. The University of Sydney arranged for the campus security to drive me each time.

Take the leap

Most universities in the world, or travel agencies, have people or departments with the sole purpose of helping people with disabilities or other issues. The key is to reach out to them and work with them on finding solutions!

When you shift your focus from the fear and thought of how problematic the complications will be, to find out how they can be solved, you might see that travelling may be far less complicated than it seems at first.

If you are scared of travelling then be sure that your fears are representing real dangers, focus on the solutions instead of the problems, plan ahead by examining who and where you can find and receive assistance. The solutions are out there, along with the great memories you will get along the way.

Take the time and experience the world!

CONTACT

If you would like to contact Christian, his email is: chmk@online.no

 

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Let’s play boccia

Fitness is big on World CP Day’s agenda. Our guest bloggers, speech and language pathologist Estelle Slevin and occupational therapist Dana Capel from Beit Issie Shapiro School, Ra’anana in Israel share how they have incorporated the popular sport of boccia into the program at their school.

At the Beit Issie Shapiro School for Children with Complex Motor Disabilities in Ra’anana, Israel, much emphasis is placed on sport in our daily program. Our students take part in walking groups, cycling groups, hydrotherapy, soccer and boccia. In addition to its importance in maintaining a healthy body, we believe that engagement in sports activities empowers our students, provides them with an opportunity to develop normative social interactions in a fun filled environment, and can serve as a means to improve behavioral, motor and cognitive skills.

Six years ago, we introduced boccia to our lineup of sport activities.  Boccia is a Para-Olympic game in which players are required to toss a ball as close as possible to the target white ball.  It can be played with one player against another, 2 couples against each other or as a team game with the team gathering points according to whose balls are the closest to the white ball. The game is played all over the world, and in Israel is becoming more and more popular.

N started playing boccia with us 3 years ago at the age of 8 years.  As a result of cerebral palsy, N has significant physical disabilities, visual impairment, and limited hand function. He uses his motorized wheelchair and navigates in the school environment, but often shows difficulty using his vision to focus on other activities such as reading and playing games. He feeds himself independently yet due to limited strength and active range of motion he has difficulty using his hands for other functional activities. He is very social and loves to make conversation with the staff in his class, but has more difficulty initiating conversation with his peers.

As a result of his weekly participation in the school boccia group, N has acquired many new skills in a variety of areas. He is able to look for the white ball and throw his ball in the appropriate direction. He engages with his peers, reminding them which stretch exercises need to be done at the beginning of each lesson, asks friends to be on his team, and has learned to wait patiently for his turn. From a cognitive perspective, he is acquiring spatial concepts (near/far), counting skills, and concepts of quantity (more/less). From a motor perspective he has made very significant gains.  In his first year playing he used a ramp to roll his ball toward the white ball, due to limited hand and arm strength.  In his second year, he was motivated enough to try to throw the ball on his own and made significant gains in accuracy and in his ability to throw farther distances as the year progressed.

Most significantly, N has discovered a pastime that he loves and which allows him to engage with friends in a fun healthy activity, one that he can participate in for years to come. He loves it so much, that he was very disappointed that he had to miss his group last week, for a conflicting activity.  No worries, N, you’ll be back with us next week!

*Developed as part of Beit Issie Shapiro’s Lieberman CP Center of Excellence

LINKS

Beit Issie Shapiro

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Christian Karlsen: One life

To have cerebral palsy (CP) is tough, sometimes frustrating and painful. I know, because I have it myself. I have experienced both the good times, as well as bad. CP has given me a life that very few without CP can understand, because it often feels different from the life normal people live.

From my childhood till now at an age of 26, I had always needed to take into consideration what my body can or cannot do. Taking care of the physical side of my body to prevent pain as well as present and future problems has been essential. I’ve had people regularly tell me to conserve my strengths and energy, and at the same time push me to regularly train and exercise to stay fit, prevent pain and muscle stiffness, and maintain functionality. With the needs and weaknesses that give me such a difficult life, it often feels that I can’t be the same as the normal people without these problems.

But in my life so far, there is one thing I have learned for certain.

Whatever kind of disability or challenge, we have the same feelings as everyone else. These include dreams and hopes, need for love and support, for comfort and safety, to feel and be viewed as strong, capable and intelligent, having a good sense of humour, being interesting and likeable. All that makes someone human, we can find in ourselves; even though we may feel different with the influence our disability has in our lives.

I am a psychology student and have studied psychology for many years. I have learned much about how our mind works, and understood how important it is to take care of one’s feelings and thoughts, and the harm  if we neglect it. We all have the capability to push ourselves through hardship and pain, push aside difficult emotions and keep our head high and focused. This works well and helps us get through life for a long time, but our mental strength doesn’t last forever.

We might feel that our emotional or psychological side has no end, that if we stay strong we can push it forever, but our brain is just like a muscle, and if we put pressure on it for too long it will either weaken or get damaged. I guess many of you have experienced it with either muscles in your feet or hand, that by putting more pressure on it than it can handle, it will get sore, painful and difficult to use. The same can be said for your brain and emotional strength.

As mentioned, we have the same feelings as everyone else, we also have the same need for rest and a break from the struggles in life. Many of us are more demanding and tougher towards ourselves than we would ever be towards anyone else. We would tell others to listen to what their bodies are telling them and to start taking care of themselves. Never doubt that your needs are just as important as others, and listen to what your body says. The need for love and happiness, to experience life and feeling desirable to others are the same in all of us.

Don’t neglect these needs, and don’t believe they aren’t for you. Our disability or struggle in life may sometimes be only as overwhelming or severe that we let ourselves to believe. You may be much more capable and “normal” than what you feel or think. Open yourself up to your feelings, listen to them, relax and always respect and take care of the needs you feel in your daily life.

You only get this life to live, make sure you’re happy and satisfied.

Contact

Christian Karlsen: chmk@online.no

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Toby Morrison: Hemiplegia

Hi. My name is Toby Morrison, I’m 25 years old. I want to talk to you about my experience of having cerebral palsy.

I’m currently the Assistant Manager of the Crouch End shop at the London Centre for Children with Cerebral Palsy in North London. My connection to the charity goes much further back than just volunteering (as I did in the Muswell Hill shop for a year), or working here.

Cerebral palsy and me

Just before I was born, I experienced a haemorrhagic stroke, causing me to develop Hydrocephalus (water on the brain). Due to the subsequent brain injury caused by the build-up of fluid, I also developed Hemiplegia, which in my case affects my right side.

Hemiplegia is essentially a form of cerebral palsy that manifests itself as lifelong effects of a stroke such as poor fine motor skill in one hand and having a limp.

I experienced severe right side neglect – as a young child I only ever thought I had my left side! I remember feeling very frustrated with being unable to use my right hand.

Luckily, my parents were introduced to Dorothy Seglow, who was the mother of a family friend. She had trained as a Conductor in Conductive Education and worked at the LCCCP. So I started having one-to-one sessions with her at their old centre at the top of Muswell Hill. The sessions involved a variety of activities and exercises that enabled me to develop an awareness of and indeed, the use of, my right side.

The techniques were simple to grasp but I remember it did take a while for me to get the hang of it (I was only about 5 years old!) and even to try to use my right hand initially, and it took some time to see the benefits.  Now, with the gift of hindsight, I can definitely see the benefit and vouch for the effectiveness of such techniques.

One of the suggestions I remember very vividly was giving each hand a different name so as to differentiate between them and to allow my parents to prompt me to use my right hand. ‘Toby, this is a two-handed job’ was one of the most common things said to me in the sessions and at home.

As an adult, I find it rather embarrassing that I ever named my hands (I think I called my left hand ‘Ben’ and my right hand ‘John’) but that is in part because they are pretty identical in how well I can use them – aside from fine motor skill. Since then, as I have grown up, I have become more and more independent, and aware of my right side.

Emotionally, Conductive Education helped me to see the worth of having a right hand (I often said as a child I wanted it transplanted or something to that effect) and practically, it has enabled me to develop a much higher level of independence and self-respect.

There are times where I have to use aids but, where possible, I do things using both hands. Being able to use my right hand has also allowed me to travel independently on public transport in London, nationally and even internationally – a massive achievement!

My future

I’ve succeeded in getting through a mixture of mainstream and special need education. I achieved eight good GCSEs, a Distinction for my BTEC National Diploma and most recently, a 2:1 for my Applied Community & Social Studies degree from Coventry University.

My dissertation focused on the impact made by various recent changes to disability benefits (such as the change from Disability Living Allowance to Personal Independence Payments, Employment & Support Allowances and the Work Capability Assessments as well as the impact of the ‘Bedroom Tax’ on people with disabilities). It was quite a challenge getting all that into 8800 words!

I’m now involved in raising awareness of cerebral palsy and advising other young people with a variety of forms of the condition.

I’m looking to either train to be a careers advisor specialising in working with 18 to 24 year olds who experience cerebral palsy or developing a career in charity retail management (hopefully with the LCCCP!).

Based on what I know now about the benefit of Conductive Education and the fact the centre allowed me to develop such an amazing level of independence, I would definitely recommend them to others.

Tips

I would have the following message for other young people with cerebral palsy:

  • Be proud of who you are and how your cerebral palsy contributes to your personal identity – if you have high tone arms, embrace them!
  • Seize every opportunity to raise awareness and remember, people may not always understand; it is up to you to educate them and spread the knowledge about cerebral palsy far and wide.
  • If you are at university, do what you can to get involved with student disability campaign work with your Disabled Students’ Group and get involved with student politics – make sure your voice is heard.

Good luck!

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Julie Brocklehurst

World CP Day is a day to celebrate the lives and achievements of people with CP and create a better world for people living with cerebral palsy and their families. Its vision is to ensure that children and adults with CP have the same rights, access and opportunities as everyone else in our society.

Robyn Cummins, World CP Day Manager explains: “Cerebral palsy is the most common physical disability in childhood, and is also one of the least understood. There are over 17 million people living with CP, and 350 million family, friends and supporters who care about them.”

I would like to use this space to educate our friends and family about cerebral palsy, to open up a dialogue and invite questions and comments in an attempt to create more awareness and understanding about a condition that is near and dear to our hearts.

I could write and write about things that I want people to know. I could tell you about the various types of CP. I could use words like “athetoid” and “hemiplegia”. I could get into the various medications and surgeries and explain the benefits and risks of a selective dorsal rhizotomy. We could discuss the uses of adaptive equipment and technical aids, and all of the possible challenges that come along with the condition, such as seizures, vision problems and hearing impairment.

I could write a lot of things, but when it comes down to it, I believe the most important message I can share is one that I think other parents would agree with, and that is that we want our child to be seen as just that – a child first, and not their disability. We want them to be accepted. We want them to be loved and to feel safe and we want them to be happy. We want people to recognize all of the joy they bring and all of the good they have to give.

Each child with cerebral palsy is unique and they make up a diverse group with a variety of symptoms and challenges. For many, their condition has limited their ability to communicate, so it is up to us to speak for them, to advocate and fight for what is in their best interest. It is so important for us parents, caregivers and family members to stand up and be the voice for our children.

Brennen brings so much light into our lives, and though there have been rough patches, I am able to see the good through it all. Sure, there are times when I am scared. There are times when I hold him in my arms and look into his eyes and tell him that I’m sorry he has to struggle, and that I’m sorry life is hard for him. There are times I want to hide away and shelter him from the world, but then I realize what a terrible loss that would be! I want the world to know my boy. Brennen is a gift and I want him to share his joy and love with many. I want people to know that though it seems impossible in the beginning, life moves on beautifully. It is a journey that is both stressful and frightening, but is also full of love, growth and understanding.

Having a child with CP has opened my eyes and my heart to a world that is full of blessings. Cerebral palsy has become a beautiful part of our lives, and one that I would never, ever give up. Today may be World CP Day, but we live with the joys and challenges of raising a child with cerebral palsy every day.

We are continuously growing and learning, but the one thing I know for sure is that though life is not always easy, it is always, always worth it.

“We must be willing to let go of the life we had planned so as to have the life that is waiting for us.” – Joseph Campbell

Through World CP Day, we will share our stories and ideas, and join together to combine our resources, energy and knowledge. Take action and join the global movement by visiting www.worldcpday.org

This blog post first appeared on www.throughthetulips.ca

ABOUT THE AUTHOR

Julie Brocklehurst is a writer, an advocate, and a mother to a little boy with cerebral palsy.

She created her blog, Tiptoeing Through, as a place to share some of her thoughts and feelings about life, love and the unexpected journey of raising a child with special needs. It has become a resource for other parents, offering support and bringing hope and encouragement to the special needs community.

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