Cass and Shannon

Cass and Brad Knight are the dedicated parents of Shannon, aged 10, who has cerebral palsy, and six year old twin boys. Their idyllic dream of living on Magnetic Island was shattered not long after Shannon’s birth, when it became obvious there was a problem. Cass’ personal experience working within the disability sector prompted the families move, as she was aware how poor services were in Queensland. They knew Melbourne or Sydney were their only options if they wanted to provide Shannon with the best services in the country.

After being revived 20 minutes after birth, and spending three weeks in hospital, a junior doctor advised Cass and Brad of Shannon’s long-term prognosis. Cass explains that her mind was unable to cope, shutting down and going into denial for months afterwards. Even when cerebral palsy was initially raised, Cass held fast to the belief that with much work, therapy and pro-active involvement, she could fix Shannon. She hoped she may lead an independent life.

This belief led to Cass setting impossibly high standards for herself. These standards would lead to mini burn-outs and then guilt for slacking off. With the emphasis on early intervention by the experts, there is urgency for intense therapy in the first six years, with each specialist outlining a unique therapy regime for the home environment. In the end Cass was doing between three and five hour’s therapy at home a day, leaving little time for the child to be a child.

It was doctors at The Royal Children’s Hospital who finally assessed and diagnosed Shannon with cerebral palsy at one year of age. An expert team lead by Gordon Bakey, Paediatrician, advised the therapy and equipment that would be useful for Shannon.

Cass had no difficulty accessing early intervention servicers, and is quick to commend the professionals that have worked with their family, teaching them to work with Shannon to understand her non-verbal cues and communication. As Shannon is an intelligent and mature child, she is grateful to have a communication system that was pioneered by Gayle Porter and two other speech therapists at the Cerebral Palsy Education Centre, as without this no one would have any idea of Shannon’s intelligence and she would be trapped in her body like others suffering from this condition.

Shannon cannot sit unsupported, cannot feed or dress herself, and cannot perform any normal life functions. She will always need full-time care. Despite frustration with the length of time her communication takes, Cass is happy that at least she has this capability.

Like many before her, Cass explains that disability becomes your life, and is a full-time job. She explains the grief families suffer is not the usual type of grief, it is ongoing and non-finite, and different stages present at any time. This prevents many families from being pro-active as not everyone is in a state to seek out the help they need, and grief and depression can debilitate.

Cass was fortunate enough to get service through Noah’s Ark, Scope and CPEC and while she is very satisfied with the service she has received, she understands there is still a shortfall in the funding of therapy. At present, any funding she receives for Shannon does not stretch far enough to cover equipment. She has to raise these funds elsewhere.

Cass is a positive, pro-active, intelligent woman who has been humbled by her experience and the people she has met along the way. Despite this, disability has had a huge impact on her personal relationship, changing the dynamics from partners to co-workers under the enormous demands placed on their family.