By Dr Mrs. Doris Izuwah (Guest Writer)
Editor’s Note: The late Engr. Chidi K.C. Izuwah was the Director General of Infrastructure Concession Regulatory Commission (ICRC), a commission that accelerates investment in national infrastructure through private sector funding by enabling the Federal Government of Nigeria and its Ministries, Departments, and Agencies (MDAs) to establish and implement effective Public-Private Partnerships (PPPs). Besides his work with ICRC, Izuwah had a great passion for the inclusiveness of children with autism spectrum disorder (ASD). In this special piece, Dr. Mrs, Doris Izuwah writes about his role as an archetypical father and advocate for special needs children.
Autism Spectral Disorder (ASD) is a neurodevelopmental disorder affecting the ability to communicate and interact socially. ASD may involve abnormal speech patterns or communication issues with comprehension problems inhibiting the abillty to follow instructions, making social adaptation difficult.
The late Engr. C.K.C Izuwah, a strong advocate and father was co-founder of Our Lady of Guadalupe Health Foundation and Autism Centre in Port Harcourt and Abuja in Nigeria. His passion stemmed from an Autism (ASD) diagnosis in his family 18 years ago. The late engineer was involved in developing young minds with ASD, going into personal research for management protocols.
His belief in exceptional services for autism led to the co-founding of the Our Lady of Guadalupe Centre for Autism (OLG) with his wife, Dr (Mrs) Doris Izuwah. Starting in a room in his home in Port Harcourt, the centre has grown to provide multidisciplinary services to over 100 special needs children and provides jobs for over 50 youths. It also serves as a referral center for hospitals, resourcing specialists to help children in the areas of assessment, diagnosis, and societal integration/inclusion. Leveraging on the success of the multidisciplinary approach on children with ASD, management protocols were extended to other developmental disorders like down syndrome and cerebral palsy.
As children with autism usually have poor social skills and limited play skills, with many toys being destroyed, Engr Chidi made sure that the centre provided durable toys that could withstand the children’s rough play. Starting OLG in his home often meant that his children’s toys were co-opted by the foundation, a trend that continues until today. The generosity of Engr Chidi meant that a continuous supply of toys and books that improved play and fine motors skills were made available to the centre with his motto being “Never give up. There is ability in disability”
Engr Chidi was a dedicated patron of the centre, even acting as the children’s barber for 3 years to fight against the hypersensitivity associated with barbershop visits for the children in the centre and ensuring the sharp lights and sounds were dampened to create a more soothing experience.
The year 2004 marked a turning point for the centre as the possibility of biomedical interventions became apparent. Engineer Chidi sponsored his wife for biomedical treatment trainings both within and outside the country, broadening their knowledge base and integrating this new knowledge into their management protocols, even including a gluten free diet protocol to address gut issues associated with ASD.
In order to improve the quality of life for individuals with ASD, he encouraged his wife and the staff to collaborate with hospitals and organisations by organising and sponsoring trainings that focused on education and community advocacy. Firm in the belief that early intervention services increased the chances of independent living, he was an advocate for starting therapy before age three and encouraged fathers of special needs children to support their children and partners, lending much needed support and educative literature, whenever possible.
Due to cultural stigma associated with autism and its resultant behaviours, many children end up being hidden at home and their families isolated. To prevent this, OLG ensured that children with ASD were exposed to social activities, with the Engr taking part in many of the activities, often acting as the MC/Chairman of OLG Autism events and sponsoring many of them. Responding to the lack of support services for those affected by ASD, he and his wife co-founded an online support group for families and caregivers called DEFEAT AUTISM IN NIGERIA, fighting the social stigma associated with ASD. Engr Chidi firmly believed that autism is not the fault of the parents nor is it a social disease therefore it should have no stigma. Children can live fulfilled independent lives with early, multidisciplined interventions.
Fully understanding that autism is the fastest growing neurodevelopmental disability affecting one in every 59 children, he recognized that autistic children are citizens of the country and deserve equal rights under the law. He believed that children needed to be encouraged to reach their full potential, passing on his enthusiasm and knowledge to everyone around him.
Special needs children held a special place in his heart, as he encouraged many organisations to adopt special centres and community schools. He was present at all of OLG’s events and made sure autism was part of every organisation’s corporate social responsibility. When OLG ran out of space, he encouraged government partnership to renovate a dilapidated school in Jabi, Abuja to create more space for OLG,s activities.
As a philanthropist, he started a scholarship fund four years ago through OLG that sponsored 25 students from rural communities every year, participating actively in the 2019 educational marathon in Isialangwa South Local Government, Abia State, an event that involved a spelling bee and Science, Maths and English competitions.
During World Autism Awareness Day (WAAD) celebrations organised by OLG in 2014 he said, “We must break barriers and open doors of opportunity to all differently abled Nigerian children on the Autism Spectrum. By doing this, we would indeed create a more inclusive society”. He reminded us that the tricky thing about Autism is that it can happen to anybody, “We do not choose it. The idea is that this challenge is for you, it is for me, it is for everybody, and we need to prepare and give the love that we would want when our time comes around to people who are in the situation currently.”
He made several policy recommendations, demanding government and private sector engagement to make autism a primary healthcare threat in Nigeria and increase advocacy and interventions to better the lives of those with ASD. We must try to ensure that his legacy continues and greater priority is given to supporting families and children with ASD.
Daddy OLG as he was fondly called was an icon and steep advocate for the advancement of autism services in Nigeria. His dedication to the ASD cause as well as his commitment to other developmental challenges lives on in his legacy. He will be sorely missed.