The Hartmann’s Story

Libby Hartmann, mother of six year old Anthony, who was diagnosed with autism in 2005, has dedicated her life to developing a framework of experience, practice and opportunity for her son. She is driven by a need to help him function effectively in the world around him.

Diagnosis is the most difficult experience a parent will face, Libby explains. ‘Because Anthony was also premature, we had a pediatrician, and on diagnosis he provided an explanation and directed us to research resources. He also contacted Illoura, an Early Intervention Centre. Their assessment of Anthony’s needs and subsequent support saved our lives. Initially, we were naïve and uneducated about autism. Without professional assistance, we would have floundered and struggled, and Anthony would have missed many of the opportunities that came his way due to this association,’ Libby says.

‘A diagnosis of disability changes a family forever. Dreams are altered irrevocably, and fears for the future haunt you as you try to comprehend the significance of a pervasive disorder. Even when access to services is smooth, like it was for us, the focus shifts so that all efforts are directed towards your child.

‘Grief becomes an ongoing process, re-emerging at each stage, reminding you that your child is different. You experience heartache watching your child overlooked in play, or screaming about something that is every day for other children. While the impact of disability is immeasurable, little achievements, such as a child dressing himself for the first time, are celebrated as great triumphs.

‘The support of early intervention services is invaluable for families. I realized in hindsight that it took me two years to understand how autism would affect our lives. Shock, confusion, denial and a belief that one day everything will be normal were common drivers in those first years.

‘I have been fortunate to experience a range of services; early intervention, speech therapy, occupational therapy, psychology, dietician and social skills programs. Despite my fortune, and amazing input from dedicated professionals, it hasn’t been enough. I’m often referred to services that cannot help me, or who require a ton of paperwork to be completed before they meet us. Access can be difficult and costly. I waited 16 months to secure regular respite, and often it is impossible for families to get this.

‘Kindergarten also created additional stress. Whilst we had a great environment and experienced teachers, I was appalled we were only funded for six of ten attendance hours. Despite arguments about inclusion and support, it was evident that the children needed full time assistance, as well as a modified program. The search for appropriate and responsive environments becomes critical for parents under these circumstances. And again, it’s the families who are impacted as they make additional effort to secure these environments, often travelling distances to do so.

‘Anthony is now at school and accessing FaHCSIA funding to assist him regulate his sensory needs, improve his language and develop better social skills. We recognize that the ongoing support of professionals is paramount to building a strong foundation to help Anthony function in the world. The disability community, including families need support and assistance, because with it, our children stand a far greater chance of being successful. It is important that we recognise this.’