At an early age of 2, we noticed that our sons were not reaching their developmental milestones. At this point, the boys started Early Childhood Intervention for developmental delays. This is when the doors opened for us to really make a difference with their growth developments.
Lachlan was progressing well with his therapy sessions and we were advised that with continued early intervention he would ‘most likely catch up’ with his developmental milestones. We were advised to get Jacob assessed as the therapists saw the ‘red flags’. We weren’t really sure of what ‘red flags’ they were talking about, especially as Jacob was progressing so well with his therapy ...that’s what we thought anyway. But we took their advice and started the process.
Every week there seemed to be an appointment for something....therapy sessions and loads of assessments with Occupational Therapists, Speech Pathologists, Psychologists, Physiotherapists, Medical Practitioners and Specialists. After a long process of assessments, Jacob was diagnosed with autism spectrum disorder and global developmental delay. In addition, Jacob was non-verbal and had severe speech and language delays.
When we received the ‘letter of diagnosis’ for Jacob, we went through every emotion you could think of, all at once. We were shocked, angry, in denial, looking to blame, relieved we got answers, thinking this couldn’t happen to our child, maybe we need to get him reassessed as it’s one of his bad days. We could not accept the news. Besides the ‘letter of diagnosis’ and a handful of ‘pamphlets on autism’ and ‘see you later, take care...’ We knew nothing about what to do next, or what we were going to be faced with.
After a very long time, we finally accepted the diagnosis, but it was still so fresh in our heads that the thought often popped up ‘has he really got autism? ...was he assessed correctly?' especially when we watched him on his good days. Realising that Jacob needed a lot of support, we never exactly knew how much.
As time went on, we noticed that Lachlan was struggling more with his social interactions and emotional regulation. We suspected that he was on the spectrum as well. Each day it was a matter of moving forward, then something would happen like a sensory overload, or some unknown trigger, which would take the boys two steps back. It took us some time to understand... that every day was different with their abilities, behaviours and developments. We became aware that visual supports were our life line... a necessity every day for us!
We created life skill story books, similar to social stories to help with communication, as Jacob was non-verbal and both were such visual learners. Juggling work-life balance, we went online and entered in the search bar ‘social stories’ and 'life skills' as we were so time poor, tired and exhausted.
*Talk about information “overload”...this is what came up when we entered “social stories” and "life skills" in the search bar!!
Overloaded by the types of information out there was the biggest problem, stopping us from doing anything. We had to try and see for ourselves what worked and what wouldn’t work. So we tried many different types of life skills stories and social stories, but surprisingly our sons responded best to the story books we created.
From then on, we continued making our own story books helping them learn everyday life and social skills. We also found using our stories, especially for Jacob, he seemed a lot calmer and happier within himself. The stories have helped take a lot of the stress out of our everyday life.
Our first family holiday was a 2 hour flight to Gold Coast. So excited but terrified of how the boys were going to sit for 2 hours on a plane, as well as the noise and crowds at the airport, to sleeping in a hotel bed for the first time!
*The boys sitting on the plane, calm and relaxed!!
We created a story book explaining everything involved with the holiday. Before we read the story to them, we gave it to a Speech Pathologist and Occupational Therapist to see what they thought. Guess what? They both loved it and gave such positive feedback. And the most awesome part to this story is that we had the best ever family holiday!
Health Professionals have mentioned to us that children with special needs can only learn a limited amount in clinical settings. We’ve found that teaching the boys everyday life and social skills in a natural 'safe' environment, our family home, has fast tracked their development and understanding of life skills.
From our real-life everyday experience living with autism, and gaining further education and training, we are so passionate in helping autistic children and the families who love them.
Several years later...we both had a light bulb moment...and thought, we can help other autistic families, like ours.
Thank you for taking the time to read our story. Have a lovely day!
Narelle & Sean
Last update: 24 October 2018
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