What Now?
Kmart had unexpectedly changed the location of the Pokémon cards, something I had successfully navigated for the past three years. Until that day.
Public spaces are inherently unpredictable. I genuinely thought we could manage this one with simple reasoning, but it was not the case. I felt the looks. I heard the not-so-quiet whispers: bad child, out of control, a good smack would sort it – the kinds of words I did not need to hear.
Panic was rising in me as I thought of the quickest route to the car.
The surfboard carry is what we called it. If I held him as a surfboard, facing outwards, he could not kick or bite as easily as if I carried him another way.
I nearly made it to the car when I heard the words, “Hi Miss.” If there was ever a time when the world could swallow me whole, this was it. Not because the student was doing anything wrong by saying hi, but because of the shame I felt in that moment.
Once a teacher, always a teacher.
This was a moment of two identities catastrophically colliding. The look from the parent was one I will never forget. It was a look of doubt.
How could this adult be a good teacher if they could not control their own child?
How could this adult be a good teacher if they had to physically carry a screaming child who was too old to be carried?
How could this adult be a good teacher if they clearly could not parent properly?
The shame in failing publicly, again. How, after so many years, was I still failing? But this was not defiant, bad, or purposeful behaviour. The rules had changed unexpectedly, and the result was always the same. Looking beyond the behaviours did not make life easier, but it provided a platform to question whether we had missed something. Surely, with two years of intervention for ADHD, we would be building skills faster than this.
It felt as though the gap had widened.
Again.
The psychologist was the first professional to be brave enough to gently provide feedback around this. I will be forever grateful for her kindness during this conversation. She did not blame. She did not criticise.
She did, however, float the idea that the gap existed because ADHD often brings a friend, or a few.
We decided to complete further testing to see if there were other parts of my son’s profile we had misunderstood. From there, the evidence collection began. The curse of a teacher parent is understanding that teachers must be objective in what they see. The teacher at the time had a great relationship with my child, provided accommodations, and felt that he had no issues in the classroom beyond what was currently being managed. This teacher saw my son coping at school. But the fact that the school was not seeing the difficulty did not mean the struggles did not exist.
What we would later understand was that my son was spending an enormous amount of energy ensuring they did not see it. We sat in another psychologist’s room again. Hours of questioning. Discussion of examples. Another report. Another contents page. Another sea of red and orange. Another giant list of deficits. Then again, the only phrase in green:
The criterion has been met.
I just remember crying. Not because of the words that followed. They did not change my child. He was, and is, who he is. I cried because it had taken nine years to move from asking what was wrong to finally beginning to understand why.
My son met the criteria for a Level 2 Autism Spectrum Disorder diagnosis.
Nine years.
Nine years of appointments, therapies, assessments, waitlists and reports.
Nine years of wondering whether I was doing enough.
Nine years of adapting our lives in ways that made little sense to the people around us.
And now, it was all coming together.
The routines.
The distress when something unexpectedly changed.
The need for predictability.
The intensity.
The masking.
The exhaustion after school.
The sense of justice that meant a teacher without a hat could not tell him to wear one.
Even the Pokémon cards. None of this existed because an adult had written the words Autism Spectrum Disorder on a report. It had always been there.
The diagnosis provided a means of funding for therapies. After being privately funded for the past nine years, this was a relief for our family. But more importantly, it gave us language. Language to describe what we were seeing. Language to advocate. Language to help others understand. And, perhaps most importantly, language that helped us understand him. We were not alone.
There were friends and family who wanted to learn. Educators and therapists who began to understand his complex world. Other families who could listen to a story about avoiding McDonald’s for eight weeks with a smile and knowing nod. But the strongest connection was happening within our own family. We were beginning to understand him. Not excuse his actions. Not remove every challenge. Not lower expectations for his learning. Understand him.
For so many years, I had collected a bunch of words that described exactly what was wrong with my child – Failure to Thrive, Global Developmental Delay, ADHD, Autism.
I had pages of evidence showing what he could not do. I had learned to think in a deficit mindset because that was the framework of the journey. However, I learned to look again. This was a boy who noticed everything. Who fiercely questioned rules that did not make sense. The boy who needed predictability in a world that was often not predictable. The boy who held himself together for the entire day and could tell me just how difficult the day had been by how the bag was thrown into the car boot.
The diagnosis mattered.
But it was not the answer I had spent the past nine years searching for.
Understanding was.
So, what now?
Now, instead of trying to make my son fit into the world around him, we had the ability to begin helping the world around him understand the child who had been there all along.
Comments