My Journey with Sally

Introduction

For a period of 7 years, the author was employed as an assistant-in-nursing (AIN) at an aged care facility that specialized in dementia-related disorders. This was followed by a move to the disability sector and recruitment as a disability support worker, a position held for the past 10 years. During this time, clients have included individuals with Down syndrome, autism, epilepsy, obsessive compulsive disorder, vision impairment, and physical and intellectual disabilities. Insight into the problems associated with these disabilities and the effect each has had on these individuals’ and their families’ lives has greatly deepened the author’s appreciation of the challenges they face.

Over the years, Sally’s disability has presented many highs and lows. Her mother has always been keen and willing to discuss her medical and learning difficulties with the author, and when needed, provide additional reading about Sally’s severe nonverbal learning disability (NLD). The author understands that this disability becomes more obvious as the young person grows older, and the widening gap between the person’s accomplishments and those of age-peers may cause depressive symptoms if NLD indicators are not recognized. Aspects of the individual with NLD’s presentation that often confuse a new acquaintance are his or her fluent speech, good rote memory, and ability to talk about a range of topics of special interest. What is hidden during a casual encounter are the person’s difficulties in nonverbal areas of functioning. These relate to tasks that involve fine- and gross-motor skills, manual dexterity, and visual-spatial perception (Rissman, 2007; Thompson, 1997). As well, trouble understanding daily routine tasks such as catching a bus, being punctual for an appointment, making friends, understanding social interactions, making reliable social judgments, and being able to interact with government, medical, and welfare agencies are just some of the daily challenges that may be faced by a young person with NLD.

When Sally has been unwilling to perform a simple task, an understanding of her impaired visual and spatial perception, motor skills, and manual dexterity has helped the author to realize that she is not being lazy but actually has trouble executing routine tasks. The difference between her background and that of other clients with a disability is that Sally was born with spina bifida, or a neural tube defect, and hydrocephalus, for which she had a shunt implanted when she was 21 days old. Since birth, she has had many shunt procedures, neurosurgeries, and other operations. Learning difficulties in a young person with spina bifida and hydrocephalus can be subtle and difficult to identify (Rowley-Kelly, 1993). It was not until she engaged in one-on-one interaction with Sally that the author came to realize that Sally’s ability to deal with daily living tasks in no way matched her strong verbal abilities. In the early days, verbal skills actually masked her practical difficulties. Knowledge of this background has helped the author to consider the multiple skills required to carry out simple everyday tasks and the support that Sally needs to perform these on a consistent basis. It is very important for parents to have a good understanding of their family member’s disability so that information and experience can be shared with the support worker and service provider.