Chasing the Diagnosis... and Missing the Child
Whilst no two children are the same, families often find similarities between siblings. Being the second child meant that my son did not enter school with an entirely clean slate of expectations. Conscious or unconscious, expectations and beliefs surrounding siblings do exist.
Our first child’s early learning journey was quite seamless in comparison to my son’s. She conformed to the rules. She was polite, helpful, kind, popular and creative. She enjoyed the classroom environment.
These qualities of success were not measures of learning, but measures of how comfortably she fitted the expectations of school.
These were the words used to describe my son during our first of many parent-teacher interviews:
Stubborn.
Difficult.
A policeman-like manner about rules and having them followed.
Energetic but not in a good way.
Does not listen.
Cannot sit still.
Behind where he should be.
Shows his big feelings, with big actions.
Being a parent and an educator myself was certainly a blessing and a curse. I knew how to read between the lines of a report card. I could look beyond the words being used in conversations about achievement - socially, emotionally and academically.
The teachers were forthcoming with their observations of my child, and I respected that. Our discussions, however, were centred around what my child could not do. It was the inevitable gap that existed in our lives.
Another reminder that whilst we had come so far, we were nowhere near the end. If I had one word to describe how I ran our household, it would be adaptive. Not that adaptive was always seen in a positive light by others.
Being adaptive was not always understood. But being adaptive gave me the ability to navigate situations that otherwise felt impossible. Being adaptive meant that everyone was safe. Not safe in a physical sense, but safe in an emotional sense.
A common baseline where we could enjoy ourselves without the fear of walking on eggshells.
We were collaborating with specialists. However, we did not have all the answers or all the strategies in place. Just when you thought you had the answers and the ability to navigate a situation, a curveball would come your way.
Pokémon cards were the currency of his choice in those days. If I needed a motivator, I would use them.
One Pokémon card for getting in the pool at swimming lessons.
One Pokémon card for helping tidy the playroom.
This also meant I purposefully never, ever went anywhere I knew Pokémon cards were sold or displayed with my son. McDonald’s ruined that for me. My child saw his friend get a packet of Pokémon cards in their Happy Meal one day. Not thinking much of it, we drove home from the park and past a McDonald’s. The meltdown that ensued was immense.
So, for the eight weeks that followed, I also had to ensure that I chose driving routes that did not take me directly past any McDonald’s, which was inevitably incredibly difficult and frustrating.
Then, 2020 came. We all lived a version of that year. A version like none we had experienced before.
2020 paused our journey at a time when we had just begun to make little progress. It saw the end of face-to-face OT, speech and feeding therapy, paediatrician appointments, Kindy, Playgroup, Rhyme Time, Story Time and regular interactions with peer groups.
Post-lockdown, the teacher at Kindergarten hinted that we should pursue further testing, as our child was not “progressing in accordance with their peers”.
Filling in the parent questionnaire was difficult. Not because I did not understand the questions. Difficult because my child was not like the others. The list of deficits was confronting.
My child is different.
My child is struggling.
Yet again, I was met with a situation where time was passing, and I could not help him.
We received the report. A 35-page document, complete with a contents page to attempt to make sense of the information. You do not have to be a doctor to make sense of the colour coding on the report. Where there was a difficulty, it was labelled weakness in bright red or low in bright orange. If there was an area of strength, it was labelled strength in bright green.
I opened the document and scanned through. I only saw red or orange. Further down the report, after paragraphs describing skills as a weakness, low, reduced, lacking and poor, I spotted some green writing. I had hope, for a second.
The green writing read:
The criterion is rated as having been met.
The criterion had been met for Attention-Deficit/Hyperactivity Disorder.
I had the report. I was waiting for the paediatrician appointment for the formal diagnosis. Yet the struggles my child experienced every day did not kindly halt and wait for that appointment. The private appointment was months away. COVID had derailed many systems, and the health system had certainly taken a hit.
I was, and still am, grateful that it was only ten months we had to wait for a formal diagnosis. We were told that public waitlists for this diagnosis were up to four years at that point in time. But my son did not have the luxury of waiting four years to be understood. He was still seen as overly energetic, disorganised, loud, disruptive, off task when he should be focused, unable to sit still and listen to instructions, and unable to cope when routines changed.
Our parent-teacher interview in Year 1 was difficult. All of the above was said. Yet I had to take a moment when I noticed where my child was sitting in the room. Isolated. Away from his peers by a significant distance. At the back of the room.
Facing the wall, away from everyone else. I questioned the desk position. I was told that the current seating arrangement was the only arrangement he was able to function in. The teacher continued to explain that my child was incredibly difficult and argumentative, so this was a way to ensure that all students could learn without disruption.
I looked at the strategy support plan that had been printed. Beautiful glossy paper. Fancy font. Diagnosis of ADHD printed in bold across the top. The plan was designed to make accommodations to support my child. To foster a sense of security, belonging and trust. I looked around the room. His desk was positioned alone. At the back of the room. Facing the wall.
Every child has a right to learn without disruption. But does one child’s right to learn require another child’s exclusion? I understood the complexities that sat behind a teacher supporting twenty other students in their learning. Again, the blessing and curse of being a parent working in education.
We had spent seven years chasing answers. I had fought to see professionals, paid for therapies, completed endless questionnaires, sat through assessments and waited for specialists. I believed that this diagnosis of ADHD would give the adults around him a way to understand him. Instead, the diagnosis sat in bold on the paper, while my child sat facing a wall.
This was the part I had not yet understood. We knew all the things that my son could not do. That list felt endless. Yet somewhere amongst the appointments, assessments, interventions, behaviour chats and support plans, there was a little boy. A boy who was loyal. Deeply curious. Creative. Loving. A boy who noticed rules everyone else ignored and experienced the world with an intensity the adults around him did not understand. Including me.
I had spent years fighting for answers about the differences we experienced. I had not yet realised that the next fight would be much harder. Having people see the child. My child. Before they saw the diagnosis.
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