By Dr Dorothy Russell, Occupational Therapist, Expert Practitioner Pediatrics, OTASA Professional Body
Bloemfontein Child Information Centre, Department Paediatrics and Child Health, Faculty of Health Science, University of the Free State (UFS).
After working for more than 35 years with people with Down syndrome (DS), I am still amazed by their resilience and positive abilities. In the late 1980s, a situational analysis was undertaken to obtain information regarding the physical environment and the availability of play material and in 1985 the following questions were asked:
- What happens if a child is in need of special care?
- How do parents obtain the assistance and support that they and their children require?
- Do the underprivileged develop to their full potential and are they afforded the opportunities?
- Is a handicapped child overlooked completely?
To address these problems the Bloemfontein Child Information Centre (BCIC) was established as a community service, which is part of the Department of Pediatrics and Child Health at the University of the Free State. The official opening was on 14th August 1985. I started working at the BCIC on 1st September 1985. I am still working there as an occupational therapist after 38 years.
The BCIC’s initial aims were to provide information and deliver a service with regard to all the complex and varied aspects surrounding child health and education. This included providing assistance in the development of all children, either with or without existing developmental problems.
My journey as an occupational therapist with babies with DS started in 1989 when a nine-month-old baby girl with a friendly smile and big eyes. She incited my interest in this syndrome. At the time, few occupational therapists had the opportunity to work with babies with DS, as they were not referred to OT in Bloemfontein (Free State) until they were six months old or older. Further, according to medical doctors, occupational therapy was not the first choice of intervention, as it was felt that the motor disabilities of a child with DS should only be assisted by a physiotherapist. This assumption is still in play today.
Down Syndrome is a synonym for a child with different constraints. The following constraints or challenges come to mind:
- Physical and sensory constraints
- Learning, cognitive and language constraints
- Social and environmental constraints
As South Africans, we are known for the phenomenon of potholes. Also, most health professionals know about the game of Golf. I want to take you on my journey, combining OT knowledge with our specific skillset in terms of DS, using the analogies of potholes and golf.
| Pothole/Bumps | Hole in One |
| Myths | Truths |
| DS is a rare genetic disorder | DS is the most commonly occurring genetic condition |
| Most children with DS are born to older parents | 80% of children born with DS, are from women younger than 35 years |
| People with DS are severely intellectually disabled and can’t learn | Most people with DS fall in the mild to moderate range of IQ |
| No contact sport, because of the Atlanta occipital joint instability | Judo is a great sport for participation |
| People with DS are always happy | Typical emotional development |
| Adults with DS are unemployable | Businesses are seeking young adults with DS e.g. gyms, libraries, acting |
| Unable to form close interpersonal relationships leading to marriage | Human rights encourage close interpersonal relationships that lead to marriage |
| Pothole | Hole in One |
| Perfect Parenting | Active Parenting: “To be or not to be a parent” |
| Overprotective parents | The ‘Just Right’ Parenting Style |
An overprotective parent does not believe their child can do anything on his/her own and that they need support all the time. During an intervention session, this behaviour of the child will influence the OT’s management of the emotional side of the child. The poor child is never on his/her own and is being kept a ‘baby’ who is not allowed to do anything. This impacts negatively on any intervention session.
This table should be helpful in planning OT sessions:
Last Updated on 28 October 2024 by HPCSA Corporate Affairs