The need for knowledge and new skills propels the parent into ‘seekership’. This stage is characterized by rapid knowledge acquisition so that new terms, medical management and therapy options are understood, and so that appropriate services can be located and retained. Mothers describe “staying up until 2 am just searching for …interventions on the internet”, or trying several doctors or therapists, until the ‘right person’ is found.
Seekership is all about understanding the labels, disability and conditions and the services or interventions that are available and useful. This phase generally won’t end until the parent has located and retained the services that the child needs.
As Anna described:
In the early days it was about never doing enough for Thomas. That was. . .before I knew where he’d end up on the scale of disability. When I was really putting in the hard yards and trying to make that first milestone with the movement or whatever and I chased around all the different therapies, gave everything a go.
This stage may recur as the child enters new phases of development such as kindergarten, school, tertiary opportunities, employment, adult services, community or independent living. Seekership may also occur if the child loses services, or receives a new diagnosis that the parents know very little about. For example, a child may be diagnosed with epilepsy at 10 years of age when the parents are very familiar with their child’s need related to another diagnosis received much earlier in life. Many children with disabilities have several diagnoses and conditions may not be diagnosed simultaneously leaving parents to re-experience seekership with each new diagnosis.