Strong belief and advocacy fuelling the turning of potential into reality
Elijah was diagnosed with autism in 2004 at two and a half years old, but his autism journey really started when he was about 16 months of age when his mother, Maeghan, started to notice that he was having troubles with speech, social skills, sleep and behaviour.
“Well-meaning doctors, speech therapists, child health nurses and family all told us there was likely nothing wrong and that we just needed to be more disciplined in our parenting. We had a successful hearing assessment done at about two years of age and had already started an early intervention program for children with speech delay, before his diagnosis.
“I had previously worked in the field of disability, so I sometimes reflect that the diagnosis was perhaps the easy part, as by that stage we felt that if a diagnosis of Autism Spectrum Disorder (ASD) could not be made, then we really did not know what to do.
“I think genuine feelings of parental grief and loss are often not clearly voiced following a diagnosis of autism. Whilst my husband was very practical in his early approach it was something, as Elijah’s mother, I felt came in waves for about 3-4 years after he was diagnosed.”
Elijah started primary school in 2008 with the school he attended being “one of the first state schools in SA to actively incorporate a group of children with autism within a mainstream class.” As he grew older, Elijah’s parents experienced what Maeghan describes as “the deep rain and then the rainbow” stage, struggling to find therapy services that were right for them, but through the experience finding an incredible Occupational Therapist, a passionate kindergarten director and the opportunity to receive a formal diagnosis at Autism SA. “I remember the relief knowing I could leave Elijah with the [therapists and teachers] team and when I returned I would not be met by a list of indiscretions and negativity… All these people at this time helped to restore our somewhat battered faith in good, genuine therapists and teachers committed to seeing the best in our child.”
Transitioning to high school was a largely seamless process, which was assisted by a dedicated disability principal and teachers that are happy to understand the struggles of an adolescent with autism. “Issues such as hiding in the lift, trying to buy a hot dog at the canteen without money and learning to get to class on time, have been met with a level of understanding we are very grateful for. Elijah loves high school and enjoys attending mainstream subjects in computing, photography, media arts and drama whilst still receiving support in a special unit for other subjects.”
One of the most challenging aspects of the move to high school was the end of a formalised after school care program. “The Community Support and Inclusion team at Autism SA were instrumental in supporting Elijah to learn the necessary skills to get home from school independently.
“Both primary and high schools we would describe as being a lesson in parental advocacy and not backing down. At times it has been a difficult fight to get the best for Elijah and contrary to my nature I have had to be a roaring tiger mother.
“In addition to in-school and therapist support Elijah has attended the school holiday program with Autism SA since the age of five and from the age of ten has attended respite weekends. Due to limited family support until this time we had never had an overnight break from Elijah. It was a hard decision to make but once we started the weekends away we realised the value of a break, time spent with our younger child and how good it was for Elijah.
“Now aged 16, Elijah’s needs have changed and we haven’t accessed weekend respite for some time, however the fortnightly social group at Autism SA has been a fantastic transition into independent living/socialising.
“Despite some of the challenges a diagnosis presents, we consider ourselves incredibly blessed to have this wonderful young man in our lives… and as a couple Elijah’s diagnosis has brought us closer together and fuelled a lifelong determination to become strong advocates for the beautiful child we dearly love.”
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