1. 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?
Jacob was 3 years old and i just had this gut instinct telling me something was different, I also noticed he was walking on his toes a lot. I took him to a specialist who told me he would grow out of it, he just had tight calf muscles, nothing to worry about.
Jacob had started going to community groups and 3 year old kindy and everyone told me he is too difficult and that this was not the space for him. It was really difficult to hear as I felt like I was being gaslight. The professionals were all saying that there was nothing of concern and the community was telling me my son didn’t fit into their groups either.
I was lucky that Jacob started at climb kindy when he was 4 and they were (without me realising) neuro-affirming. They accepted Jacob as he was and told me he was flourishing (which I could see he was). Jacob went to pre-primary the following year and struggled again.
He had difficulty following instructions and issues with toileting. The teacher at the time told me he should stay down for a year. I was adamant that he would not because he had formed friendships and loved going to school and I didn’t want his motivation to go to school to turn negative. Jacob got his first diagnosis of ADHD in September 2021. We saw some improvements but there was still something else there.
Year 1 was the turning point for us. We had a teacher who was neuro-affirming that built Jacob up and had the balance of pushing him to meet his potential. She encouraged us to seek an autism diagnosis and Jacob received this in August 2022. He then received a diagnosis of auditory processing disorder in April 2023.
2. 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 has ADHD, ASD level 2 and auditory processing disorder. This means that Jacob finds change hard, he finds it hard to connect with his peers and as he grows older as he doesn’t quite understand social concepts. If he doesn’t understand the purpose as to why we do things it’s really hard for him to complete the task.
Jacob also is A+ masker. You can’t tell that Jacob has anything different about him until you do. He is a happy smiling kid who will tolerate a full day of being overly stimulated and will not let you know that anything is wrong until he gets home and all his emotions come out like a dam that breaks and the water just rushes out.
What this means is that if Jacob is overtired he is likely to have a meltdown, or if he is overstimulated, it takes him longer to process information. His auditory processing disorder means he needs simple instructions and doesn’t cope well with multi-step instructions. Jacob feels the difference and has said to me many times that he feels lonely because no one gets him. It was really important for me to seek my own diagnosis to lessen this impact on him.
3. 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?
We have to be mindful of where we place our energy. Our routines are pretty rigid and require lots of planning to support. We also have lots of moments of rest. When things are overwhelming we let the emotion run its course and then reconcile after. We cannot do any teaching when he is overwhelmed and the best thing for Jacob is to gets his sensory needs met. Because of his diagnosis we are now looking for diagnosis for our other 2 children.
4. 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 does physio, OT and speech which has helped him build strength, develop muscle memory for movements and develop emotional resilience. Jacob also has an adapted bike which gives him the independence to ride to school and has adapted cutlerly to increase his independence making his own food. We use visual schedules which help keep him on track.
5. 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 primary concern is that the community is not ready to be inclusive of my kids.
Even though there is awareness around the stigma attached to having ADHD and autism, I feel it means the wider community still see it as ‘being less’ than everyone else. My concern is that Jacob will never be allowed to reach his potential because the community won’t allow it.
What Jacob needs is for the community to look past the behaviour or the difference and understand at a very basic level Jacob is just like everyone else who is trying to get his basic needs met and yearning for connection and to be understood.
When we can all sit in a space of curiosity and truly understand the others perspective that is when we will have an inclusive community.