Why special needs children have a soft spot in our hearts

When Marek Krakus left Kalisz, central Poland in 1998 for Kenya, he did not have a solid plan of what he wanted to do, but he was sure that he wanted to work with charitable organisations.

Today, the father of two, who has a Master’s Degree in Theology from The John Paul II Catholic University of Lublin, runs Furaha Children’s Centre, a home for special needs children.

“At the time, I did not have a clear picture of what I wanted to do, but I was keen on doing charitable work. Being my first time in Africa, there was anxiety about the future,” Marek says.

He worked for various children organisations including an institution for children with cerebral palsy in Murang’a County before moving to Meru County in 2010. Here, he served as a director of Aina Onlus Children home, a charitable organisation supporting children with HIV/Aids.

It is here that he met his wife Jadlyne Makena, who was working as a counsellor.

“In Meru, I realised there were a number of people with disability begging in the streets. Some of them were children with cerebral palsy. I talked to the parents of these children at length, and they told me that they had nowhere to get therapy. On further research, I realised that there was shortage of institutions offering care for children with cerebral palsy and autism in Meru,” Marek, who has worked in Kenya for the last 22 years, recounts.

Touched by the children with cerebral palsy that kept being paraded in the streets of Meru town to beg, he and his wife decided to do something about it.

Makena, a counselling psychologist, says it was easy to buy into her husband’s dream having developed a passion for working with vulnerable children from her college days. In 2010, they established Furaha Centre, starting with five children, the first in the day care centre.

Multiple disabilities

Makena, who is currently studying a course in occupational therapy to better work with children with cerebral palsy and autism, notes that parents come to them with expectations of their children recovering fully, which is not possible.

“We cannot promise that a child with cerebral palsy will recover fully, but we are sure that they will achieve some milestones,” Makena says, adding that a number of children who were brought to the centre with multiple disabilities have been rehabilitated and reintegrated into school.

“One of the cases that gives me so much joy was that of child with cerebral palsy that was brought to us unable to take care of himself in any way, but within two years, the child was able to stand, walk, eat on his own and weaned of diapers. The child is now in school. These are some of the heart-warming experiences that keep us going,” she says.

Marek adds that enabling parents embrace their special needs children and offer them the care they need, is a priority for the centre, which has, in the last four years, taken care of 300 children, some who are still under their watch while others have been reunited with their families. The couple runs the centre through fundraising locally and abroad, particularly in Poland and Italy.

Furaha Centre currently runs two care facilities, one in Meru town and another Mikinduri targeting Meru and Isiolo counties.

Marek explains that taking care of children with special needs is expensive and taxing, and therefore needs dedication, as such, many of these children are neglected. Another stumbling block is the stigma attached to disability, as well as inaccessibility to essential therapy.

Ignorance among parents on how to identify cerebral palsy, autism also adds onto the suffering of these children.

Marek notes that most of the children who have gone through the centre live with their grandparents, while most of these children’s mothers have been abandoned by their husbands.

Biggest challenge

This is despite the fact that the children can be successfully reintegrated into the society through therapy.

“While working with children with HIV/Aids, I noticed that children with neurological conditions do not have access to good care. The children are stigmatised, discriminated against and denied a right to a social life. About 60 percent of the children we have seen are under the care of grandmothers,” he says.

“The biggest challenge is lack of awareness among residents on how to manage the conditions,” adds Marek. His main objective, he says, is to ensure children with cerebral palsy and autism are embraced by the society and access quality care.

Furaha Centre organises the ‘Walk or Wheel with me’ event in Meru town every year, as part of efforts to raise awareness on the conditions and help dispel the stigma around it.

“Social therapy, which includes taking the children to public places and meeting people, is very critical because most of the children spend all their time indoors. One of the biggest challenges is the lack of disability-friendly facilities in our towns. The government needs to address this challenge because even public offices are not disability friendly,” the Furaha Centre Director says.

In the last four years, the centre, which offers day care services, therapy and training for parents, has so far reached about 380 children with about 20 in day care daily.

He advises parents to improvise assistive devices such as sitting and walking aids if they cannot afford to buy them. A session with an occupational therapist twice every two weeks is also recommended to assist the child become independent.

Marek advises that a parent must first accept the child’s condition and be willing to work with a professional in giving the child an independent life, only then can the child begin the journey to recovery.

Managing autism

Parents are also advised against giving sugary food to children with cerebral palsy as it increases drooling. A specific diet and proper feeding are critical aspects in the wellness of these children, with Marek noting that most children with cerebral palsy are underweight and malnourished.

“We advise mothers to express milk and feed the child using a bottle because it is difficult for them to suckle. With time, a child with cerebral palsy can start walking, standing and talking,” says Ray Nyankieya, an occupational therapist at Furaha Centre.

As for autism, it is a neurological condition that causes social integration impairment where a child lives a solitary life. The therapist says that severe autism presents with hyper-activity disorder, where a child has a very short concentration span.

“We manage this condition through school based activities and playing to calm them. We also use music, sensory and pet therapy to manage autism. We advise parents to gradually introduce the children to groups to manage the tendency for solitude,” the therapist says.

Marek says pet therapy is one of their latest interventions, and includes use of rabbits and dogs to manage autism. The playful pets enable a child with autism to learn how to concentrate on one thing as well as aid in the introduction of the child to group interaction.

“We have introduced rabbit pets for children with autism because it helps them calm down. Our plan is to introduce modern techniques of therapy through partnerships with various institutions,” he says.

In the pipeline is a plan to establish a permanent rehabilitation centre in Meru that will incorporate modern therapies, serve children from across East Africa and provide special skills training for those with cerebral palsy, autism and Down syndrome.

Some of the modern therapies Marek intends to introduce for management of autism and cerebral palsy include hydrotherapy, use of water, and hippotherapy, which refers to the use of horse riding as a therapeutic or rehabilitative treatment, the aim to improve coordination, balance, and strength.

This year, a Polish cyclist, Zbigniew Ciszek, helped the couple raise more than Sh2 million for construction of the proposed rehabilitation centre.

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