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3.6
December 20, 2020

A “Different” Journey

I feel the strong sense to write as if not another task can be completed until I do so. The bills can wait, the messages will stay on hold till I have allowed myself the time to process the news I was given 20 minutes ago.

“We don’t think your son is Autistic. If he is, I really need to assess my abilities as an ASD assessor.”

Not yet an official diagnosis, but extremely definitive.

I left the assessment with a result that has basically concluded the last 4 years of our lives.

I am trying to pinpoint an emotion that stands out for me and I cannot fathom one; there feels like too many.

Wait, that’s a lie. There’s one; an overbearing feeling of pride. I’ll explain.

My husband and I walked out from a detailed interview process which was the final step in a 4-hour long assessment with our eldest son. We discussed everything from his ability to interact with peers, how he played, his sensory processing, listening abilities, decision making, intellect and even right down to how he ate, slept and toileted. We re-lived those years and recalled every assessment and professional in his life since he was 3. So many memories that were filled with moments of despair, worry and angst. What also happened as we unraveled our journey was the realisation of how far he had come; how far we had all come.

A tear rolls down my cheek as I hear the assessors giggle and recall with pleasure the hour-long play session they had with my son earlier that morning. “He is the most beautiful, likable and imaginative child! So funny!” one gushed. It feels like recognition of how hard we’ve all worked, none more than James, on turning things around. It feels amazing for someone else to see him as we do.

I genuinely believed he was a high functioning autistic child. I had confined with my family and friends, that was what my gut told me, driven by all the research, interviews, and professional opinions I’d encountered over the journey. There is a whiff of guilt shuddering through me, “but I was so sure”..

I push the guilt to the side. No more self-loathing will go on here. I’ve seen it in my son, and I do not intend to be a role model for it. I see the benefit of my self-diagnosis up until now. It fueled my desire to learn more about ADD, ODD, ASD, ADHD and closed mindsets. If it weren’t for my insistent researching, I am not sure I would have found out he was gluten intolerant, and I may have not made all the changes I did to his diet to go completely additive free when I did. I enrolled in Nutritional studies, signed up to newsletters, brought mindset tools, fidget toys; anything and everything I thought might help our child cope and do better. I uphold that my unfaltering belief served a purpose in allowing others see my son in a different light at a time where he held none for himself. Labelled very quickly as the difficult kid or the naughty kid in the early years. As time went by and professionals were suspecting ASD people’s focus changed. Strategies were sought, tools supplied, understanding and patience given. Who’s to say what the journey would have looked like otherwise?

Neurologically our son went through a shift just over a year ago. All four of us in the room agreed unequivocally. It appeared to coincide with the diet changes and perhaps coupled with maturity; but no one can know for sure. I had already decided that no matter what diagnosis was given that nothing would really change for us. I had said to people that I think that my child may have high functioning autism but have never suggested that to him. His understanding is that his brain operated differently to some, that he had different abilities but also meant situations were often harder to cope with; especially big feelings. Nevertheless, there is an amount of foolishness that I feel but I believe that originates from my ego.

It is now time to change tact. Change my language, but not change how I respond and help my son.

Time to use past tense language, to shine the light on how much he’s grown. He has become proud of the fact he has differences, and the picture is testament to that. I cried when he brought that home. He now sees it as a good thing.

Time to grow his confidence, to undo his “I am naughty” conditioning, to reverse the belief that he “cannot help it”. I believe that we can condition our minds to believe in anything and that will then become our reality.

I think our brick road may still have many hurdles and junctions to decipher but we have an even bigger sense of accomplishment and confidence in our son and ourselves thanks to today.

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