An unplanned journey: giving hope & renewed sense of purpose to parents of children with disability

Ndagijimana Anastase clutches his 10-year-old boy Ndayisenga Evode as they sit down to speak to me.

It is unusual for a 10-year-old boy to be dotted upon by his parent like that, but in this case, it is understandable. Since he was a little boy, Evode has suffered from Sickle Cell Disease (SCD), a disorder that causes red blood cells to become misshapen and break down.

Infections, pain, and fatigue are symptoms of SCD, and unfortunately for young Evode, a way of life. His health complications have caused him to miss school, and not meet most developmental milestones of children his age.   

Raising a child with disabilities can be challenging – to say the very least. Evode has missed large chunks of school because at times he feels great and attends school, passing with flying colors. But then his SCD strikes, leaving him weak and barely able to function.  

Anastase is just one of thousands of parents of who have Children with Disabilities that are being supported by UNICEF through Chance for Childhood – a local Non-Governmental Organisation – to access mainstream and disability-related services such as education, healthcare, rehabilitation and social protection, and child protection.

Through Chance for Childhood, UNICEF conducts regular training for parents of Children with Disabilities, frontline social workers like IZUs and Community Health Workers (CHWs), education officers, health officials, local leaders and community members on ways to properly care for CwD, how best to feed them, educate them, but most importantly, be keenly aware of – and accept – their special needs.

The project also helps parents and caregivers such as Anastase to access self-help groups and other community-based initiatives to respond to immediate special needs and build up family resilience, offsetting the heavy emotional and physical toll of raising a child with a disability.

With thanks to the generous support of Swiss National Committee for UNICEF, almost 5,000 parents of Children with Disabilities have benefited from this project, gaining enhanced understanding of how to cope with the rigors and demands of raising a child with a disability.

Hundreds of the social services workforce (IZUs and CHWs) as well as headteachers, health officials, and local leaders have been trained, helping raise their awareness and importance of paying special attention to children with disabilities.

Community-based structures have also been strengthened, providing them with the necessary knowledge/capacity to respond to and provide services, and support children with disabilities and their families.

I was privileged to attend one such training and have a heartfelt conversation with Anastase. 

Anastase narrates to me how the impact of discrimination against children with disabilities – and their parents and families – denies them access to basic services and opportunities such as education or healthcare, play, family life, participation, adequate standards of living, as well as protection from neglect, abuse and violence.

He acknowledges that training sessions such as these ones – while imparting tangible, hands-on skills of how to care for a child with a disability – also serves another, equally important purpose: reminding the parents of CwDs that they are not alone.

“There is something really important I’ve understood from this session. When you have a child with disabilities, it’s easy to start pointing fingers and laying the blame with your spouse. We were taught not to do that – and this has really helped to strengthen our resolve as a family to take care of our child with disability,” Anastase intimates, staring at the distant horizon, lost in thought.

“When we receive such trainings, it gives us a renewed sense of hope and self-worth. This may seem like something small, but it isn’t. My relationship with my wife had really deteriorated. And when this happens, this can have negative consequences on the child.”

“Overall, we have really benefited from the training sessions we are given, and quality of life – for both our child and the family – has improved,” Anastase says.

In Rwanda, despite massive gains made in the area of child protection – and the steadfast commitment by the government to ensuring that all children can achieve their full potential in a safe and protective environment – a 2020 assessment revealed that over 2,000 children with disabilities were still residing in institutions, and a qualitative study conducted 2016 highlighted that children with disabilities remain largely excluded from accessing social protection services.

Globally, UNICEF research indicates that among 240 million children with disabilities, half have never attended school; up to one-third do not eat enough of the right food.

Behind those statistics are countless stories, ambitions and obstacles faced every day by children with disabilities. UNICEF’s mission is to include all children with disability in education, health, emergency response, social protection, family and community life.