Mumbai talks prevention, early detection and intervention

The aim of the talk was to create awareness on cerebral palsy for social workers and teachers (Bal Wadi) who work at grass root level serving a low economic population of Mumbai. The effort was made to collect them together under one platform. Over 150 participated in this event.

The participants were very enthusiastic to learn and were there early to start the program at 9:30 am to 12:30 pm. These participants are employed by the Local Government Body who work in their appointed area where they gather all children and take care of their early education, provide meal, educate parents on vaccines and other health issues.

Introduction of What is Cerebral Palsy?, statistics and types of CP and information on cerebral palsy was covered by Jasmeet Arora from Hi 5 CDC.

Prevention covered aspects of pre pregnancy care , during pregnancy care and complications at time of birth and post delivery. Dr Pooja Shukla, MD OB & Gynac also specializing in high risk pregnancy, answered all the queries of the participants.

Early Detection was addressed by Dr Kintu Chandiramani who shared her experience in early identification of children with developmental disordered, health issues seen with children with cerebral palsy were also highlighted. She also stressed nutrition and diet along with importance of vaccines. Various myths were discussed and questions were answered.

Early Intervention was covered by Dr Harish Badiger, Senior Physical Therapist who highlighted the need for early intervention, as well as covered various therapies currently available. He answered questions of various developmental issue which were put forward by the participants.

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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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Kerri Morgan: Let’s fight tooth and nail for these children

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Last August I flew out to Ghana to meet and train therapists working with children with both cognitive and physical difficulties.

I took  with me lots of orthopaedic shoes and splints to hand out, some kindly given by parents of children at the London Centre for Children with Cerebral Palsy and a job lot from a London orthopaedic clinic, sourced by one of our parents.

During my month-long trip I was asked to give a talk on cerebral palsy to parents and staff at the Orthopaedic Training Centre (OTC) in Nsawam, which is just north of the capital Accra.

A label with no explanation

Each sentence I said had to be translated into Twi which meant it was pretty long. But it was wonderful to see a smiling nodding crowd as, for the first time, they saw their child and their lives described in the words of a professional.

They were hearing what cerebral palsy was – this label they had been given for their child with no explanation. They were finding out what this meant for their child, what was going on, why and, most importantly, what they could do to help.

There is a culture of not asking questions of medical professionals here a nurse told me afterwards. She works in a clinic nearby and spends so much time trying to work out what has gone on before. Mothers bring their babies to the clinic having seen a doctor elsewhere, taken medicine from them and given it to their child but they have no idea why, what the medicine was or what it was supposed to do. The information was not offered and they were not supposed to ask.

So I made myself available for questions during and after the talk. It started at 10am and I didn’t finish taking questions until 3 pm – even then I could have stayed later but the Centre was closing!

Sharing my experience of working with children with cerebral palsy in the UK, I think many found it reassuring that frustration is felt everywhere – even in a country with some of the best facilities in the world.

And it is, it really is because we, as professionals and families alike, love these children and fight tooth and nail for them.

But having cerebral palsy is hard, really hard. And I know it’s hard for the families I work with here and in the United Kingdom.

Life as a battle

Whilst living day to day life with all the usual stresses and joys, they also have this battle on their hands every day. A battle to make the world around them see their child, to keep their child healthy, a battle to have the opportunities we can all take for granted and a battle with all the emotions that brings.

In addition, something that few people like to talk about is grief and guilt – two incredibly natural feelings that are often hidden.

Cerebral palsy is caused by a disturbance or damage to a developing brain. So a lot of parents can end up harbouring feelings of grief, grief for what has happened to their child and for the kind of life they wanted for their child. And then guilt for feeling this way, guilt feeling that something could have stopped this. It’s a completely natural feeling, but one that is not justified.

Our natural instinct is to protect children and so when something goes wrong, even when it is completely out of our hands, it is all too easy to look inwards with anger.

I’m not a parent and I therefore cannot imagine what it feels like to have a child or have a child who has complex needs.

I do, however, love the children I work with dearly and, having spoken to many of their parents about this complex subject, I’ve seen that these feelings are very common.

A parent of a disabled child I used to babysit once told me:

“When you plan to have children you envisage your future life and theirs, you imagine typically that they will be with you for around 18 years, they will branch off and live their own independent life, maybe get married and have children of their own and then they will be there for you in your later years.

Our reality is having our child with us at home for the rest of our days, reliant on us for much of their day. I would never have it any other way but, at the same time, this is not how anyone thinks their life is going to go, how their child’s life is going to go. They will never live an independent life and I spend my life terrified of what life holds for them after I’m gone.

Cerebral palsy has taken over all our lives. We don’t live your typical family life and I feel horrendous that I’ve just said that.”

I’d like to stress that I am talking here specifically about children with complex needs as this is my speciality and that is the audience the talk was for. Needs that often include limited mobility, self-care skills, swallowing or communication difficulties. There are many, many individuals with cerebral palsy who live completely independent lives.

In Ghana the socially accepted ideology tells parents that that cerebral palsy or any additional needs are spiritual diseases; they are punishment for wrong-doing, a curse or even spiritual possession.

As wrong as this is, when everyone in your world is telling you this, when you see no one else with disability, when there is zero media representation and some random person (me!) has come over to your country to disagree with everything you’ve ever known, who are you going to believe?

Incredible and moving

The power of having all these parents in one room was so incredible and so moving.

Many of them were on their own – their families including partners had left them after finding out their child, their grandchild or their friend’s child has cerebral palsy. Having someone acknowledge that and having other families with the same concerns around them, which for many had never happened before, was a huge experience.

It was cathartic for everyone to just hear they weren’t alone and I found it humbling to be a part of that. As part of my job I do a lot of staff training. I lecture for Canterbury Christ Church and Greenwich Universities and I advocate wherever possible. But nothing has ever felt as important at that talk.

Stop Press: Good news!

After I got home to London, I received an email letting me know that there’s been a big movement after the talk and, as a result, the Centre is collaborating with the Special Mothers Project, an organisation set up by mothers of children with cerebral palsy, to hold a bigger awareness workshop soon in Accra.

They need a Speech and Language Therapist to help and so asked for my recommendation in finding one and my advice from the United Kingdom!

This is exactly the kind of impact we were aiming for so I am so so pleased for them.

Kerri Morgan
Paediatric Speech and Language Therapist
London Centre for Children with Cerebral Palsy

WEB LINKS

London Centre for Children with Cerebral Palsy website.

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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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Peter Brown: Adapting to a new normal

Reflection

Last week, I turned 57 years of age. With retirement now less than 27 months away, there is an opportunity to reflect on what has occurred to this point in my life. This reflection necessarily includes a determination as to how I have coped with living as a person with a physical disability. Surprisingly, as time has gone on, the concern of what was once a very uncertain future has diminished significantly, likely in part due to the process we all go through, to define ourselves and our normal state of being. I believe this process is to a large extent based upon two words which defined my past and likely has significant application to all persons with cerebral palsy. Those words are acceptance and adaptation.

Childhood

As a very young child, it never dawned on me that I was in any way different. I suppose that at the age of five, I thought all the other five-year-olds were doing as I was, going daily by Easter Seals bus to GF Strong for treatment and to attend kindergarten. The two years I attended school at GF Strong was my normal, which obviously became a different normal, when I entered the public school system. As would soon become apparent to me, what I thought was normal was somewhat different in the world of public school, given that I was the only disabled child in the school.

This was one of my first experiences with the two words adaption and acceptance, both for myself and for those who I met. One has to remember that in the mid-1960s, integration of disabled children into our public schools was not anywhere near the extent that it now is. In fact, to some extent, integration was still frowned upon and the idea of institutionalization of those who were different remained the norm. I guess, to an extent, I was one of the trail blazers on this particular issue.

Adapting to my ‘new normal’ in public school meant that I had to understand that the great majority of children would see me as one of them, as long as I did my part and treated them with the respect which I was hoping for. There would always be the stares and the odd comment, which is often the response of others witnessing a difference in their environment and it is often the response toward any person who is in any way different. This would have to be accepted by me for the rest of my life, which was initially easier said than done but soon became apparent that this will be part of my challenge to rise above it all. Again, acceptance and adaptation.

Fortunately, there was more than enough support and acceptance to keep my head up and soldier on. It also became clear that I had to adapt somewhat to this reality and there was somewhat of an obligation on me to educate the other children on what my disability was and what it was not. It was not something that they needed to be afraid of nor would they catch anything simply by hanging out with me. It was simply something that happened at birth, that’s the way it was, like it or not.

The hand you’re dealt

This perspective was one that I maintained all my life, one that aligns with the idea that we are dealt a certain hand in this poker game called life and that you either played your hand or you folded. However, those that tend to fold tend not to enjoy the highs and lows of the journey through the game called life. Thus, I grew up with the view that I could either “fold”, or I could discover the value of the cards I held and adapt to my reality, regardless of what I may not be able to do.

It soon became apparent that there were plenty of goals I could achieve. Part of the exercise was identifying what were those goals which would push me to achieve new limits physically and mentally. It was also a challenge to identify the fear involved in pursuing the challenges and eradicate such fear to the best of my ability.

It is this honest effort and approach which fortunately won me acceptance among my peers, particularly as I grew older. It became my obligation to do all I could to ensure people around me were comfortable with my disability, understood what I was all about and what I should be held accountable for.

A roller coaster

The roller coaster of living with a disability mirrors the highs and lows of the life cycle of a young child, adolescent, young adult and aging adult. The difference for me was to try to incorporate whatever challenges my disability brought into the challenges which life itself brings and to try to accept those challenges in the best way possible. To me, the ability to get the most out of life meant I required acceptance, both myself for my disability, and from the world for who I was.

Acceptance and adaptation are two major aspects of travelling the journey with the disability. However, the achievement of these concepts require a considerable role on my part, which in turn requires me to identify and accept the process which I needed to pursue. Acceptance and adaptation are not concepts which naturally flow directly to anyone, unless there are positive steps taken by the individual to allow these concepts to occur. In the world of a disabled person, it is undoubtedly more of a struggle to identify and accept the processes which we have to undergo to get to the point of achieving purpose and success; however, it is an essential exercise that we all must go through.

Potential

It is an interesting journey for me, particularly with respect to being a single person as a young adult, a married man, a father of a daughter and a professional for almost 30 years. All of these roles have their demands, which I’ve had to fit into my normalcy of being a disabled person. That requires a certain amount of adjustment, compromise and knowledge with respect to what I can and cannot do physically, particularly as I age. This is a process which everybody goes through, regardless of ability or disability. It is perhaps a reflection of the perseverance and the capabilities of the disabled person to go through what is undoubtedly a difficult process for many people, with the additional challenges of their disability and yet still endure and in many cases, succeed and excel. The examples of this are numerous throughout the disabled community and speak volumes to the potential which is inherent within us all, regardless of ability or disability.

About Peter Brown

Peter Graham Brown was has lived all his life in the Vancouver area of Canada. He completed two years at Capilano College, followed by three years at Simon Fraser University, where he graduated with a BA in criminology. Peter graduated from the University of British Columbia’s UBC’s law school in 1987 and articled with the Ministry of the Attorney General, Legal Services Branch until he was called to the bar in 1988. He has worked in his present position with the office of the Public Guardian and Trustee since 1991.

Peter is adopted and has four siblings and numerous extended family. He has been married to Michele, who is an elementary school teacher, since 1992 and their daughter Ashley is 22 and finishing her BA in International Relations. They currently live in Port Coquitlam BC. Peter is a member of the Advisory Committee of the Cerebral Palsy Association of British Columbia

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Jon Blake

I was 52 and a well-established children’s author when my partner and I had our first child, Jordi. It soon became evident that he couldn’t sit up like the other kids, or crawl when they started to crawl, but it wasn’t till he was nearly two that he was diagnosed with cerebral palsy. At first it was a terrible blow to us, but eventually Jordi did crawl, then walk (albeit awkwardly). His movement problems did not make him any less open, enthusiastic or affectionate, and the warmth of his personality melted hearts everywhere.

I really do believe that those movement problems had a positive effect on Jordi. Unable to run around with the other kids, he read avidly, and it soon became apparent that his literary abilities were exceptional. At the age of six he won a national poetry competition and began dictating stories which showed not only great originality but also a highly developed sense of how to tell a tale. We put these stories on a website, www.jordiblake.co.uk, which now features his latest work in progress, a novel he is writing at the age of nine.

These days Jordi usually has three or four books on the go at any one time. He’s read just about everything I’ve written, and first came to understand his condition through my story collection “Oshie”, about a boy with CP who has an encyclopaedic knowledge of football. I got that idea from Jordi, who wakes at 6:00 am every Sunday so as not to miss a moment of Match of the Day, and recently featured in Cardiff City’s programme advertising their community football sessions. For many years Jordi was adamant he would become a professional footballer, but now has a more realistic ambition: to become a professional writer. In this I am absolutely confident he will succeed.

Last year I wrote a comic novel for juniors, Thimble Monkey Superstar, about Jams Cogan, a boy with CP, and the lovable anarchic monkey who comes to live with him (there’s also a miserable failed writer dad, but we won’t talk about him). I tried hard to write a chapter of Thimble a day, knowing that Jordi would be rushing home from school eager to read it. He is the best possible audience, not only because he laughs so much, but also because he gets so involved in the story and comes up with dozens of ideas. He even sang the theme tune which we put up at https://youtu.be/7Qje4_vht0c.

Thimble Monkey Superstar aims to entertain, and Jams’s disability is just a fact of life rather than the subject of the book; he uses a walker but is not defined by it. However we do use Thimble events to raise awareness of CP, and therapy centre Bobath Wales helped greatly with the book launch and feature it on their website http://www.bobathwales.org . We’re planning an event at Bobath for World Cerebral Palsy Day on Oct 5 (see www.worldcpday.org and #WorldCPDay).

So far response to the book has been fantastic. In my experience most schools do not teach enough about disability and I do believe Thimble will prove a great place to start.

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Viktor Johannson: Celebrate Potential

At World CP Day, we want to celebrate potential – and so does the Swedish artist Viktor Johansson. His new song “Celebrate Potential” is out now.

Viktor explains the inspiration behind the song…

When I became a father to a boy  who was diagnosed with cerebral palsy, I understood that life would be full of challenges. We often meet obstacles for which we try to find solutions. I think that my son can do everything, but it needs to be in his own way and from his own starting point.

Together we want to rebut the prejudices that society can have towards people with different disabilities.

The tune is now available on Spotify, so if you have the app, just search for Celebrate Potential or find it on the Spotify website.

Viktor works as a music teacher at the songwriter Andreas Carlssons Academy of Music and Business. He wrote the song with “Dejo” Andersson, a platinum award-winning songwriter and producer.

All proceeds will be donated to the Swedish brain fund and research on cerebral palsy.

This project was a collaboration with Svenska CP-föreningen http://cpforeningen.se/world-cp-day-2016/

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