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Maxim Kiselev Makes His Mark Through Dance

Twenty-nine year old Maxim Kiselev lives in in Moscow, Russia, with his beautiful fiancé, Natalia, and lives with spastic tetraplegia which mainly affects the left side of his body. Maxim is a wheelchair dancer, and does both ballroom style dancing and figure skating on ice.

He initially took up dancing at 14 years’ old as a way to try to strengthen his left side – in particular his left arm and fingers which had limited functionality at the time.

“In the beginning I was simply excited at the thought of doing something new that doctors thought could improve my quality of life,” Maxim said.

His plan was to be the standing partner of a person using a wheelchair, however his challenges with coordination and balance meant this wasn’t an easy feat, and he eventually realised that it wasn’t going to be possible.

“When my mother and coach suggested I get into a wheelchair myself, as the severity of my disability allowed me to do that, I was furious.

“I worked so hard through the years to be able to walk! Getting into a wheelchair felt like a setback. But they insisted and managed to convince me. I got into a wheelchair and was quickly pleased by my progress,” Maxim continued.

After two years of wheelchair dancing, Maxim attended a paradancing show, which featured really talented professional dancers.

“At the show I realised that there was a whole new level I could get on.

“My mother found a ballroom latin dance club and they had a coach who was willing to work with me, although he had no experience with people with disabilities in a wheelchair,” Maxim said.

A month later, Maxim was thrust into competing in the Eurasia Cup 2007. This was his first tournament, and he was a complete newbie, but he managed to place fourth in the solo category.

The possibilities without a partner are pretty limited, so Maxim went on in search of a dance partner. With only a few weeks practice under his belt with his first partner, the pair took part in their first tournament—the Open Belarus Championship 2007, where they were Vice Champions, which Maxim says was “surprising and encouraging.”

Finding a partner

While his start in partner dancing was good, he says finding the right partner (or any partner!) wasn’t easy, and he faced a lot of discrimination along the way.

“My mother would get in touch with the girls’ parents or coaches and the vast majority had a very rude reaction as soon as they found out I was disabled. Nowadays the attitude towards disabled people in Russia started to change slowly, but back then it was pretty bad.

“The people my mother contacted didn’t even want to know what the deal was, they just refused to have anything to do with disability. Some other people (about 10%) were more open minded and polite, but they had a hard time figuring out what wheelchair dancing was and how a person in a wheelchair could dance,” shared Maxim.

Most of the time, Maxim’s partners would be noticed for their talent during competitions and would move on to a partner who didn’t have a disability. In the course of ten years, Maxim says he had about 14 different partners.

Check out Maxim in Virtual Reality!

Learning from coaches

His coaches really drove him to grow and develop as a dancer, and even without experience, came up with some great techniques to help him manoeuvre the chair more easily.

“In the beginning we were building the choreography around the standing dancer and my part was choreographed subsequently to make me fit in with the wheelchair. With time we really managed to adapt choreographies originally designed for two standing dancers and incorporate a great number of traditional elements of Latin dance,” said Maxim.

His dancing was elevated even further when his third coach forced him to think like a standing dancer. Maxim says this is what helped his performance to look like dancing rather than just rolling back and forth on the dance floor.

“He taught me how to do more than simply execute dance moves, he taught me to feel the music and the dancing,” Maxim said.

Not without its challenges

While Maxim’s dance skills grew to be exceptional, partner dancing with one standing and one seated dancer could be quite tricky!

Maxim said:

“The most difficult part was the closeness. The key aspect of dancing is that the two partners are very close to each other. This must be the same in wheelchair dancing. The standing partner must stand really close to the wheelchair… which means that any wrong movement with the wheelchair could cause a foot or toe injury for her!

“We had to go very slowly until the movement was perfectly assimilated and performed without staring at my partner’s feet!”

Dancing with CP

Maxim says one of the biggest challenges he faces is the fact that his left side is significantly weaker than his right. His left arm tends to repeat the movements that his right arm does, which can be a big problem when he’s trying to do asymmetrical movements or lead his partner.

“It can disrupt the rhythm of the dance and instead of feeling guided, my partner might get confronted with a counter-current momentum,” said Maxim.

Maxim also has to work with the lack of sensitivity in his left arm.

“When I have to move it while staring in the opposite direction, I don’t exactly know what it is doing. Managing this requires tremendous effort, and because of the lack of sensitivity, I also often hurt my fingers in the wheel,” said Maxim.

After 10+ years of dancing, Maxim says that making the same movements on both sides (rolling shoulders, turning etc.) with the same amplitude and speed is a challenge. This, he says is something he and his coach have managed to work around, and now, these weaknesses have been turned into strengths.

It also helps when his partners have more body strength than average dancers as sometimes they need to help Maxim stop the wheelchair, or pull it while remaining pretty and gracious.

Proudest moments

Maxim says his greatest pride is having taken his dancing skills on ice. He is the first high level figure skater in a wheelchair, and still the only one to this day.

What’s next for Maxim?

Maxim is taking a break from dance at the moment because of health issues, but is filling his time with other exciting projects.

He recently participated in a Russian Virtual Reality Project—VRability—which aims to motivate people with disabilities to get more active in real life. You can read about Maxim here.

He’s also working on a wheelchair that will be lighter, more technologically advanced, and easier to handle than any other chair that he has used. He has a concept, and is looking for funding to build his first prototype!


You can follow Maxim and his fiancé, Natalia on Instagram – @nagrimakis

 

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The pop-up centre getting kids with CP moving!

Families are travelling as far as five-hours on a round trip to bring their kids with CP to Gympanzees’ all-inclusive pop-up leisure centre.

You might wonder why anyone would travel that far to go to a gym. For these families and their often-isolated children, the wonderful results being seen by this first-of-its-kind program make it a no-brainer.

Reportedly, 84 per cent of UK families with a child with a disability can’t access regular leisure activities. That sort of inactivity then has a knock-on effect for that child’s physical and mental health.

It’s not only the child that is impacted -this kind of societal isolation has an enormous impact on families. Reports suggest that 72 per cent of parents in this situation also experience mental health challenges related to the isolation.

Enter Stephanie Wheen-Gympanzees’ Founder and CEO, and Physiotherapist for children with cerebral palsy.

In 2016, Stephanie began extensive market research and early planning on how to overcome this issue, specifically in the Bristol area.

It was the tipping point for many lives to be uplifted by what was to come.

The project

All that market research led Stephanie to create Gympanzees, a fully inclusive leisure facility which would cater for people from 0 – 25 years of age with any ability.

The centres have many different types of rooms that each offer a unique way of getting active and having a sensory experience, including:

  • Sensory rooms
  • Music rooms
  • Indoor and outdoor playgrounds
  • Space for soft play
  • Trampolines
  • A gym
  • Therapy rooms
  • Studios for classes such as yoga
Her vision was about creating a safe space for people with disabilities to become fully engaged in play-motivated exercise. She also wanted families to have the support of being able to interact with one another.

“The major goal of Gympanzees is to encourage fitness in young people through play, using highly trained staff who can engage with each visitor using specialised equipment,” says Stephanie.

So, with all that in mind, she pitched her idea for Gympanzees to the Natwest Accelerator program and incorporated as a social enterprise in 2017.

The newly formed social enterprise went on to make plans for building the first permanent Gympanzees facility, but it became quickly apparent that this would not be a fast process.

Not wanting to lose momentum on addressing the need, Gympanzees became a pop-up exercise.

The first four-week Gympanzees pop-up was held at a special school during the UK Summer of 2018, supported by more than 80 volunteers and members of staff.

Every day, close to 56 children came through the pop-up gym.

The following Easter, Gympanzees held their second pop-up which saw tremendous growth with close to 80 children coming through the daily.

“We’re running pop-ups in school holidays because we know that’s a time when the families of children with disabilities feel isolated,” says Stephanie.

Alongside the pop-up gyms, Gympanzees has also grown a thriving online community, with social media being used to make sure people know when and where all the action is taking place. It’s also creating a place for families to communicate outside of the pop-up events.

The results

To-date, more than 527 people with CP have visited one of Gympanzees’ three pop-ups, and more than 3930 people have visited in total.

“Our research tells us that 98 per cent of those people loved their experience and would come again,” says Stephanie.

“Every parent tells us we offer unique facilities for them and their child that can’t be found elsewhere,” she says.

Approximately one in five visitors to a Gympanzees pop-up will travel for over two-hours for the experience.

“Several of our visitors spend close to a five-hour round trip just for one session,” says Stephanie.

“This tells me how desperate the need is for our service.”

To evidence the need and the results, three interns from the University of Bristol have joined with Stephanie purely to conduct research on the Gympanzees facilities and the impact it’s having on those it’s intended to help.

A subsequent report has been produced by the interns which lends great credence to the achievements of Gympanzees.

The report incorporates a substantial element of feedback on experiences had by those attending the pop-ups and has become a central feature of how Stephanie and the Gympanzees crew continue to evolve what they do.

“Our visitors have experienced countless health benefits, including drastic improvements to sleep patterns, new strengths, confidence in walking and in their other gross motor skills,” Stephanie explains.

Among the success stories coming from the early days of Gympanzees is that of a six year old who managed to take five steps on her own using her frame. Prior to this, her mum would move her legs for her, so this shows the scale of the progress made at the pop-up.

Another six year old boy learnt to hold his head up for the first time and was able to do so for a full 10-minutes.

“A particularly special moment for Gympanzees was with a man living with CP who joined his 3-year old son on a trampoline for the first time with the aid of hoists,” says Stephanie.

“The son had no disability and so this showed us the effect on the quality of life for our beneficiaries. It’s so obvious in the smiles and the strengths we see develop in our facilities.

“Particularly special was seeing a three year old boy laugh for the first time while using our equipment with his mum. She said it was the best moment in the last three years of her life.

“Our ethos and focus is on fun,” says Stephanie who shares the quote below which came from one parent that she feels tells the whole story:

“There is a difference between your child being tolerated and celebrated, and here it is so clear they are celebrated.”

It’s not just the people who use the gym facilities at Gympanzees that are benefiting from this initiative either.

The well-run café that supports the Gympanzees pop-ups is staffed by a volunteer adult with CP and his carer.

“It’s another great testament to our inclusivity, demonstrating how people with disabilities are central to the delivery of our project,” Stephanie shares.

Future plans

Right now, Stephanie is most focused on proving that the Gympanzees pop-ups can generate the minimum number of attendees each month to deliver financial sustainability for a permanent bricks and mortar facility.

“Each of our pop-ups grows incrementally, requiring more rooms and equipment, larger rooms and longer hours,” she says.

“We are planning to continue our pop-ups and building our supporter base, business model and offering the much-needed services.”

The hope is to secure funding and land for a permanent Gympanzees leisure centre to be built by 2022, with a long-term vision to open 13 such centres across the UK.

“On weekdays the facility will be used for regular play as well as therapy sessions, and on weekends, the studios will be available for birthday parties or other celebrations,” says Stephanie.

“It will be a social space for people to meet up, get to know and support each other.”

An online shop is also in planning so parents can purchase the equipment their children are using at Gympanzees and enjoy continuing development at home.

Stephanie has already been approached by other therapy centres and interested parties from across the UK who are interested in the Gympanzees model. This has led to investigations around the possibility of franchising the pop-ups with the aim of testing the concept in areas outside Bristol before building further bricks and mortar centres.

Gympanzees won the Major Award for Quality of Life in the 2019 World Cerebral Palsy Day Awards.

To learn more, visit gympanzees.org

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Bring home the importance of sleep, nutrition and movement for CP families

Dr Olaf Verschuren has been working with the Centre of Excellence for Rehabilitation Medicine, the UMCUtrecht Brain Centre, Utrecht University and De Hoogstraat Rehabilitation in the Netherlands for over a year to tackle the challenge of poor sleep, nutrition and physical activity in children with CP.

The doctor and his colleagues started by interviewing the parents of 15 children living with CP.

The clinicians wanted to know what concerns existed around making sure their children received proper sleep and nutrition, and that they were getting enough daily movement.

It quickly became clear to the project group that parents struggled in all three of the key areas being addressed. They worried about doing too much, as much as they worried about doing too little.

Also clear from the interviews, was the absence of evidence-based resources that could effectively support the families through this specific challenge.

The project team were well aware of the strong correlation between long-term health quality and sleep, nutrition and physical activity.

Obviously, it’s not practical or cost effective for families to bringing their children to see clinicians every day. So, how can parents give their children the highest possible quality of care in their homes?

Collaborating with parents

Dr Verschuren and his colleagues began collaborating with parents to develop online resources that would be useful in day-to-day family practice.

Alongside parents, the project group started identifying relevant sub-themes of sleep, nutrition and physical activity.

The collaboration was effective. A care-path was formed that followed three steps:

  1. Screening children with CP in the 0 – 8 years age group
  2. Identifying children with, or at risk of, problems with sleep, nutrition, and/or physical activity
  3. Providing care and support for these children and their families, starting with the resource development.

Bringing home the resources

In June 2019, the project published a series of resources to the CP-Nederland website (a patient focused website from the organisation previously known as BOSK) to address each of the three related health areas.

The resources are presented in a variety of easy to understand formats including infographics, videos, posters, cards and text.

In the first two months alone, the new web pages had been visited more than 1000 times and the infographics were downloaded more than 400 times.

Anecdotal outcomes

Most of the feedback received by the project team is around sleep.

“Screening for sleep opened the eyes of many parents,” says Dr Verschuren.

“But also, the physicians did not realise that sleep affected so many children and their parents.”

From the 80 parents the team have screened in the past six months, more than 75 per cent indicated one or more sleep problems.

Most parents have reported feeling that the website provided plenty of information on all the three areas covered by the project.

“There have been many suggestions that a great addition to the website would be a child-friendly resource as well,” says Dr Verschuren.

“We’re hoping to find funding to work on that in the near future,” he says.

Parents have also expressed their appreciation for all the information on the website being based on evidence that it is clearly organised and on a website they trust.

Future plans

Dr Verschuren says that being involved in a rehabilitation program is like being a professional athlete.

“For professional athletes, physical activity and exercise training programs are just part of their formula for success,” he says.

“Elite athletes know the importance of nutrition and sleep as ADDITIONAL key factors in sporting success.

“Physical activity, sleep and nutrition are considered the three main components that allow an individual’s body to achieve its goals related to activities in daily life.

“That’s why we need to pay attention to them and to optimise them for the maximum outcome we (the child, parents and clinicians) are aiming for,” he says.

While the website has filled a void for families in The Netherlands, Dr Verschuren and his colleagues know that easy to access information is not going to be enough on its own to transform the lives of children with CP.

They have their investigations set firmly on understanding:

  • how parents perceive the use, utility, usefulness and impact of the online resources
  • what more they need to enable them to integrate that knowledge into their lives and
  • how to empower them to support the long-term health of their child with respect to sleep, nutrition and physical activity.

In the meantime, the group are translating their resources into English to make them more accessible across the World.

This project was funded by the Innovation Fund from Health Insurance Companies in The Netherlands. 

To see the full suite of resources, visit the CP Nederland website.

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Jerusha Mather Makes Her Mark on Medicine

Born in Sri Lanka in 1994, Jerusha was destined to achieve great things.

She was diagnosed with atheoid cerebral palsy by doctors in Sri Lanka who said that it was unlikely she would ever walk or talk.

With this information, her parents decided to immigrate to Australia where they could access a more advanced medical system.

Atheoid cerebral palsy, otherwise known as dyskinetic cerebral palsy is characterized by abnormal, involuntary movement.

It’s safe to say that she proved those doctors wrong. Not only can she walk and talk, she attended mainstream primary and high schools, and has completed a Bachelor of Science (Biomedical Sciences) at Victoria University and a Biomedical Sciences honours year at RMIT University.

With those qualifications under her belt, she commenced a PhD at Victoria University in the area of biomedical sciences, and is currently investigating if strength training can improve neuromuscular and motor function in adults with cerebral palsy.

This means she’s working on finding out if there are ways to improve the way a person’s brain communicates with their muscles, which could make a difference to their ability to move their muscles.

Jerusha’s schooling experience

At school, Jerusha says she “did okay.”

While she experienced bullying and had some challenges making friends and managing her workload, she says:

“I got involved in a lot of fun things (including music, reading, and sport) and focused on the positive things. I made a difference in my community.”

Though Jerusha’s experience at school was largely positive, she knows there’s plenty of room for improvement.

“I think we need to think about tasks differently, and design them to focus on the person’s strengths and abilities. We need to build online interactive learning and testing platforms that support the student’s abilities.

“We definitely need to develop better software for people with CP, and create appropriate support services that are professional and thoughtful. We also need to be flexible and open minded about things,” offered Jerusha.

Finding her passion

It was midway through high school that Jerusha realised her calling.

“I have always had a strong desire to help people. I also loved biology and thought medicine was a perfect career pathway to do this,” she said.

Fast forward a few years and Jerusha has certainly made her mark on the medical field through her research, and additionally with her efforts in advocating for changes to the Australian medical school entrance testing structure.

Advocating for change

For many years Jerusha has dreamt of becoming a medical doctor. As a young person she wished she could have had a doctor with similar life experiences to her own—someone who could relate to her personally and also relate to her condition.

With few examples out there, Jerusha is aiming to become the doctor she wishes she had as a young person. She knows that as a medical doctor she will be able to approach her patients with a level of empathy and understanding that many others don’t have.

Jerusha says:

“I would like to change perceptions and ideals of people with a disability in medicine, and challenge and disrupt discriminative systems in medicine and make them inclusive.”

She says the entrance exam alone (GAMSAT – Graduate Medical School Admissions Test) is brutally challenging.

“The GAMSAT is not like typical university exams as they’re not testing prior knowledge. It’s a timed and hand written test which assesses a person’s ability to solve problems.

“Like what is offered to indigenous students, there also needs to be special pathways and entry schemes for students with a disability that consider their disadvantage and consider them on their merit and abilities.”

“There’s also an interview component where discrimination can occur as someone could easily judge me based on my disability and underestimate my ability,” said Jerusha.

Changing the selection criteria

Jerusha is working alongside a representative from the Australian Medical Association to change the selection criteria.

“There is a clause with a policy document created by the Australian Medical Council that states that medical schools should create special entry schemes for disadvantaged groups, and we are using this clause to fight very hard for the rights of students with a disability.

“We are building a very strong case that will ensure that no discrimination (from medical schools) occurs in the future,” said Jerusha.

Not only will this give Jerusha a greater chance of gaining entrance into medical school, it’ll be a huge win for people with disabilities who wish to become doctors.

If alternative entry pathways are implemented then Jerusha believes more students with disabilities will feel comfortable disclosing their disability, which will allow medical schools to prepare for the student’s journey ahead of time.

This, she says, will help medical students to approach things like completing exams and clinical placements without so much pressure, stress and difficulty.

Jerusha’s advice for others with CP looking to make their mark

“Do not give up on your mission to create a difference. You will get there. I think your ideas and stories are important in creating a diverse and inclusive society. Creative minds are much needed in today’s society. Talk about and action them,” said Jerusha.

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Chloe Tear: Advice for health professionals

When you have cerebral palsy you cannot escape the fact that health professionals will be a part of your life. You will meet them in loads of different health departments, often seeing different people within one department. Also, with certain aspects of CP (like vision or speech impairments) mean you will be referred from one person to another. Trusting the health professional’s advice may be hard if this is a new experience for you, or if you feel they do not see the full picture – so here is my advice to health professions when having a patient with cerebral palsy.

We live in our bodies 24/7 so knows what works, and what doesn’t. So is the advice we get given sometimes unrealistic or unhelpful? Cerebral palsy is a massive spectrum of a condition and affects everyone completely different. This is one aspect which can be challenging when listening to health professionals. Sometimes I wish they would listen to what we have to say and not just what typically should be happening with our progress.

This was apparent when I was younger; it was all about meeting milestones and keeping on track. Yes, I appreciate this is important, but it is not always possible to do everything correctly. Similarly, I clearly remember being told by my Year 4 teacher that if I practised my 8 times tables then I would learn them. At the age of 19, I still do not know my 6, 7 or 8 times tables, nor can I tell the time that well- not that it stopped me getting a maths GCSE or getting into university! Yet when I was younger I believe what this teacher had told me, I felt like I had failed every time it just didn’t work.

Another piece of advice that I would give health professionals would be to expect cerebral palsy to change. I know it is considered a non-progressive condition, and this is true for the brain damage that causes the condition itself. However, I know from first-hand experience that CP can change the way it affects your body. I also know that I am not alone in experiencing this. Cerebral palsy can often change as we grow, with me dreading growth spurts as it would just make my muscles even tighter. When we say this is not our ‘normal’ and we feel that things are starting to deteriorate please take us seriously, even if it is ‘what you expect from cerebral palsy’. At the end of the day, we want our bodies to be as functional as possible and know when things aren’t the best that they can be.

Cerebral palsy may be a physical disability, something that can impact many physical aspects of our life, but please don’t forget the mental side to any physical condition. It can be extremely frustrating when we feel stuck in a body that doesn’t seem to listen to us. Unfortunately, there is only so many times we can trip up over our own feet and find it funny. Despite our positive attitudes it can become too much at times. So if we seem quiet or distant please keep in mind this is probably not due to us being uninterested, merely just the fact we have gone through this process many many times before. We really do appreciate what you do for us.

Thank you to all the professionals who make our lives easier. You will never know how much you really do help and the vital differences that mean we can live a fuller life.

To find out more about my educational journey please visit my blog at http://cpstudentblog.blogspot.com.au

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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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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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Hannah Awadzi: Special Mothers Project

No man is an island, so the saying goes, however most people living with cerebral palsy in Ghana are isolated from public life.

People with cerebral palsy are denied education, sometimes basic health care and almost completely isolated from public activities. Mostly children with cerebral palsy are kept indoors and this is not the making of only the parents, but the society.

The facilities to help people living with cerebral palsy to have an enhanced life are simply not there. Additionally, awareness about cerebral palsy is very low, even among the educated.

Some parents get frustrated to get point of wishing their own children with cerebral palsy dead, yet others are reportedly frustrated to the point of killing their own children.

There is also no clear pathway for parents or care-givers to follow in terms of managing a person or child with cerebral palsy and those who are able to sustain medical care and support do so at huge financial cost.

Ghana is therefore denied the opportunity to access the impact that people with cerebral palsy could have in terms of their contribution to national development instead many are forced to beg on the street under the scorching sun or rains.

Parents are burdened with managing children with cerebral palsy alone, forcing many parents and care-givers to abandon their jobs or their careers.

Special Mothers Project

The Special Mothers Project, an advocacy and awareness creation organization on cerebral palsy was started when I realized the very low level of awareness on the disorder.

The project creates a platform for parents and care-givers of children with cerebral palsy to get together, share ideas and see how we can together influence policy to favour these children.

As a mother of a 3 year old beautiful girl who has cerebral palsy, I believe that given the necessary supportive environment coupled with the right equipment that facilitate movement and the right policy framework, children with cerebral palsy in Ghana can have an enhanced life.

The Special Mothers Project uses the platform as a skill learning platform where parents and care-givers exchange ideas, share opinions and encourage one another.

With the necessary support and funding, the Project organizes periodic workshops that brings professionals like physiotherapists, speech therapists and special educators together with parents or care-givers to impart knowledge and share ideas.

It also serves as a counselling point to new mothers with cerebral palsy children, given my background in psychology and as a communications professional, as well as the experience of providing social care for children with cerebral palsy

The Project also does a lot of news articles on cerebral palsy and, when given the opportunity, uses the radio platform to educate the public about cerebral palsy.

Education a priority

My biggest desire will be to have government formulate favourable policies that will enable children with cerebral palsy get educated. As is it now, in Ghana, schools use their discretion to either accept or deny a child with cerebral palsy admission.

This is due to the fact that many schools do not know how to handle a child with cerebral palsy. Even though there are special schools in Ghana, they are for children with autism, Down syndrome, blind and deaf.

There is absolutely no provision made for a child with cerebral palsy to be educated in Ghana, so if a parent is not a bit more forceful the child ends up being isolated or killed.

I will be more than glad if the Ghanaian society and the government pay more attention to issues related to cerebral palsy. To at least give these children access to basic education, health care and to enhance their lives to enable them contribute their quota to national development.

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Special Mothers Project

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