Disability Focused Phase
Once parents feel satisfied with a decent understanding of their child’s condition and have retained some of the services that their child needs, a phase of slower knowledge acquisition, but ongoing information-seeking continues. In this phase, some mothers describe feeling pre-occupied with their child’s condition and life situation.
Phillipa felt like she was just going around and around: “It’s just like Autism, autism, autism! Nothing else can hold my attention”. Interventions and treatments received by the child take priority over family life. Families may move to a new community, house, change jobs, and relocate their other children to live closer to services that the child needs. In this phase, parents may spend excessive amounts of money seeking assistance from a range of services. Some services are dubious and offer unrealistic outcomes:
We sold our car…our family car, so that Lucas could undergo the treatment. It cost $10,000…his legs seemed to be weaker afterwards and that was the only real change.
During this phase, information and education are important to assist decision making. It is imperative that you have sufficient information about services and options that offer your child positive health and progress.
Another aspect to this disability focused phase for mothers is educating others about their child’s condition or disability. Many mothers begin to advocate and educate others about their child’s unique needs. Often, mothers will advocate for other children as well. For some mothers, disability becomes a life vocation.