By Kellie Galvin
How did you first become aware that there might be a concern about your child’s health or development? What were the early signs that led you to seek a diagnosis?
At around 18 months I began the questions with our GP, plus my son’s childcare centre as Jacob wasn’t talking and he was minimal with babbling.
Our GP was not too concerned, however the childcare centre gave us a brochure from NDIS. It focused on a new early intervention program which was fundamentally the starting point of our journey. I’ll be forever grateful to that one educator that listened and provided us a starting point!
Can you tell me a bit about the diagnosis your child received? What does it mean, and how does it affect your child’s life?
Jacob is ASD level 2, non-verbal, with SPD. We started with basic key word sign to communicate. He then taught himself how to sign the alphabet from watching a YouTube video, so he would spell to me what he wanted or needed. We now have an iPad with Proloquo2go as well. His SPD does prevent him from everyday things at times and he is especially sensitive to smells and sounds which can really impact some fun activities for him.
How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?
My husband changed careers after diagnosis which allowed me to stop working, so I could focus on helping Jacob transition to starting school. I am always available for assistance at the school and the general running around to therapy and doctor appointments. Whilst we are extremely lucky that we can do this, it has been difficult to not have a job after 20 years of working. I had a bit of identity loss from that. My husband also struggles at times with understanding Jacob’s needs & wants, plus he misses out on the really fun and brave moments for Jacob too. Both of us have made sacrifices, so to speak, but the benefit it has made to Jacob is 100% more important for us as a family.
What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well being?
Jacob attends speech therapy, occupational therapy, play therapy and physiotherapy. Each therapy has provided both Jacob and us with insight into each area, and helped arm him and us, with strategies, routines and support to benefit him.
All of his therapy is not only a massive help for Jacob, but for us as his parents. It’s been vital that we have professionals to speak with about any concerns, and show us ways to better support Jacob.
As a parent, what are your primary concerns and hopes for your child’s future in light of their diagnosis? How can those around you offer support during this time?
My biggest concern is whether Jacob will be able to live independently, and if he isn’t able to, who will care for him when we are no longer here, and how will he mentally cope without us?
My hope is that we are ensuring no rock is left unturned in regards to any support available to Jacob and that we are equipping him with all the right life skills.
Despite all our fears and concerns, we know he lives a very happy and safe life. I wish those around us knew that by still ensuring Jacob is included in activities and invited to functions, that it supports us as a family too. It can feel isolating when events take place and we find out afterwards. We want inclusion, and understanding, not fear and a pity party.
