Children are our heritage as they bring family and communal bliss, hope and securing our future generations.
As blessings from our maker, children are endowed with multiple talents, and skills and more importantly-the abled differently. To help in identifying, tapping and nurturing this rare talent, Winam Child Without Limits (WCWL), a community-based organization, has embarked on concerted efforts to realize their desired dreams.
WCWL is a game-changer for children living with disability, for it believes in and creates awareness among parents and caregivers by stressing the uniqueness of every child and so is the child spectrum.
Founded in 2017, the organization thrives on creating awareness, preparedness and acceptance of disability in general. Their major area of concern is the children living with autism and offering encouragement to parents and caregivers to accept their children despite their condition.
Farida Sat, the founder and director of WCWL, is the epitome of love and sacrifice for disabled children. The organization does assessment, mentorship and registration. Her charisma, passion and commitment to helping the less fortunate among the disabled, are clearly evident in her work.
They work closely with both the County and National governments, and various organizations including the Kenya Red Cross. Through this partnership, they have been distributing cereals, foodstuffs and clothes from the organization and well-wishers to the parents.
Pointedly, the organization believes; ‘that no person abled-differently is limited, hence giving the society a positive understanding on issues disability.’ It organized the first-ever World Autism Day in Kisumu, in collaboration with the county government and other stakeholders in celebrating the day.
The event marked on April 2, 2022 at the Kisumu Day High School, was used as a platform to advice and offer moral support to caregivers and the society to embrace neurodiversity development. It, further laid emphasis on people to focus on UN Sustainable Development Goal (SDG), to ensure inclusivity and education equality.
‘Without the awareness, there is no preparation and acceptance. To create a positive acceptance of disability with a major focus on autism,’ Sat elaborates during the interview at their offices located in Mamboleo, along the Kisumu-Miwani road.
They support the parents through doing the identification, assessment, and placement in various hospitals and schools. Additionally, they do sensitization and referrals in hospitals and follow up with the registration process of the national disability identity card with the National Commission on Persons Living with Disability.
“We visit schools and homes to check on their progression, give advice on nutrition and do capacity building for teachers on how to handle autistic children,” Sat passionately informs.
Similarly, they accord parents psycho-social support who are under the WCWL WhatsApp group to take care of their kids. It’s a safe interactive forum for sharing caring tips, challenges and possible solutions to the parent’s mental health.
The organization has been working closely with parents and teachers to monitor the academic progress of about 14 autistic children who are enrolled in different schools in the region.
Hopefully, WCWL wishes to kickstart Youth Relationships with Limits. Its core function will be how much we relate, what we know about each other and encouraging parents to stay together in their autistic kids’ upbringing. A move they intend to achieve by working with colleges and universities through sensitization.
Relatedly, Positivity in Living will be for parents and the society to accept the children and accept disability. WCWL does functional assessment, identify the children from Joyland Educational Assessment Centre and picks parents who wish to get support from them.
“My inspiration came from a sad story from a child who was my former neighbour, and he used to be kept indoors and later I found out he had cerebral palsy,” Sat shockingly says, adding that; “he even passed on and never saw the light of the day because the parents were ashamed of him and the society was not accepting his condition.”
The organization’s greatest achievement is when through their efforts, autistic children attend school and move from one grade to another, play with other children and see their improvement. Sat is a sister, mother, daughter and passionate about children with special needs, educationist, and special needs teacher, psychologist and an educational assessor.
The former Achego Girls alumnus and Great Lakes University-Psychologist student highlights the lack of donor funding as one of the challenges affecting the children. The organization has to grapple with the logistics problem of not only reaching them but also serving them from where they are. It always does carry out activities to the best of its knowledge and expectations…because they are self-sponsored.
Autism is also known as Autism Spectrum Disorder (ASD), a neurological developmental disability that impacts the nervous system. The diversity of the disability means that each person’s individual experience of autism and needs for support, and services can vary widely.
Autism types include; Asperger’s Syndrome, Rett syndrome, Children disintegrative disorder, Kanner’s syndrome and Pervasive developmental disorder. Signs mostly appear early in children’s development between 12 months to 18 months of age or earlier.
According to the Centre for Disease Control, autistic children mainly have poorly developed social skills, difficulty with expressive and receptive communication, and the presence of restrictive and repetitive behaviours.
In detail, they have unexpected reactions to extreme sounds, tastes, sights, touches and smells. The affected child repeats words and phrases over and over, which is called Echolalia and has obsessive interests in things. They develop an extreme fear of new people, crowds and social situations.
Statistics from the World Health Organization (WHO) indicate that the condition’s prevalence is four times higher in boys than girls.
Perskila Ondieki, a parent living with an autistic child shares her trials and tribulations since she discovered her son’s neurodiversity disability nature.
“I was shocked when the assessors carried out tests and told me that Damon, my firstborn son is autistic,” Perskila says as she narrates how she took him to a children’s competition held at the Agakhan Hall, Kisumu.
“The father was similarly shocked, depressed and full of disbelief,’ as she continued, ‘we had to take him to the hospital for another round of medical tests to ascertain the bitter truth.”
Perskila opines that Damon is always hyper-active whenever he gets angry, and can even knock his head on the wall to express his emotions.
Forlornly, she narrates the frequent rejection from various people and housing relocations ordeals she undergoes with her husband as they try to live normally in the society. She heaps praise on her spouse, mum and WCLW, for giving Damon the requisite support despite facing tribulations from some family members and friends.
“My social life has changed a lot and I have lost many friends because I thought that they will be there for me,” she sadly admits.
“Painfully,” she reveals, “some people tell me that I have done a lot of rituals to my son for wealth creation and instead mockingly call him ‘demon’, as opposed to his real name of Damon.”
Perskila is actively involved in a volunteer program with WCLW in creating awareness among other parents and caregivers, and more emphasis is laid on ‘acceptance of the condition.’
Damon, a Grade One pupil at JPC Junior, eats a diet rich in whole foods such as fresh fruit and vegetables, seeds, nuts and whole-grain which are naturally higher in vitamins and minerals.
“I reduced sugar-related foodstuff in his menu, and successfully been using honey to control his hyper reactions,” she points out that they get nutrition advice from WCLW.
“The school has really helped in shaping his physical and mental progression,’”Perskila happily says.
Concurring on the present predicament, Caroline Agwanda, the Kisumu County Governor’s Special Advisor on Persons Living with Disability, advises and encourages parents and caregivers to form an association as a platform to champion their plight. Occupational Therapist, Amara Michael echoes similar sentiments on sensitization to encourage parents and understand autistic children.
WCWL is registered to work within Kisumu County and the neighbouring counties within the Lake Region. It further lays emphasis on people to focus on UN Sustainable Development Goal (SDG), to ensure inclusivity and education equality.
Spouses are encouraged to take joint responsibility in taking care of their autistic children, but shouldn’t abandon them. Both the county and national tiers of government are called upon to offer more support to ease the burden of educating autistic children.
“Every child should be given a space, accepted as they are, able to attend school and allowed to coexist in the society,” Sat advocates in her parting shot.