In Nelson Mandela Bay, the Pathcare Cytogenetics Unit diagnoses three children a month with Down Syndrome, and the annual incidence of diagnosed children have ranged from 25 to 35 children in the past five years.
“The biggest challenge for the children in Nelson Mandela Bay with Down Syndrome isn’t their medical care, but the support for early childhood development, and special needs schooling,” comments Carol Massyn, Port Elizabeth Down Syndrome Association (PEDSA) Chairperson and the Head of Pathcare’s Cytogenetics Unit. “Which is why we’re delighted that Early Inspiration can continue its Down Syndrome Support Programme for parents of young children with the condition.”
In its second year, and funded for 2017 by the Jim Joel Fund, the Early Inspiration Special Needs Support Programme brings together parents of children with Down Syndrome to provide support and offer advice to enhance their child’s development, and create a network of assistance and understanding.
Dr Lauren Stretch, early childhood development specialist and founder of Early Inspiration says: “Children with Down Syndrome learn and progress differently, however, it is important that we understand that not all areas of development are equally affected, knowing each child, their needs and brain processes is fundamental. By understanding how development and learning differ for children with Down Syndrome you can create more effective teaching approaches and therapies.”
Providing support for parents is crucial for building resilience and enhancing self- confidence. Children with disabilities are often misunderstood, by parents, teachers and communities. Sindiswa Mtsila, a parent from Walmer who participated in the 2016 programme, speaks from experience. “When my child was diagnosed with Down Syndrome, I didn’t have a good understanding of what it meant, but this programme opened my eyes to see my child in a new way.”
Visiwe Lydia Mandeka, another mother of a Down Syndrome child from Walmer, adds, “I learned that all children are different and that as parents we should love our children no matter what.”
The Down Syndrome Support Programme by Early Inspiration takes a holistic approach and enables and equips parents with practical strategies and ways to understand their children while supporting the child for them to understand themselves, their needs, strengths and challenges.
The programme comprises of eight sessions and includes weekly contact, at-home visits, innovative in-home implementation strategies and community-based parental support. “A multidisciplinary team assisted in the material for the programme including education, psychology, social work, dietetics and sports science,” adds Dr Stretch.
Topics covered include basic communication, understanding children’s health, hygiene and nutritional needs, understanding how children best and effective discipline strategies for special needs children.
Author: Kimberley Clare Ogden
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