Two Years

Two years and a few weeks ago my son commenced occupational therapy. His occupational therapist was always wonderful, often inspired, and so engaged with my son’s development that she frequently sent me fabulous follow-up emails between sessions which did me no end of good to move forward in helping my gorgeous son connect with his world again.

Two years and a few weeks ago my son’s language skills were only just begin to return, after a notable but not complete absence over the previous two years. Those first sessions at OT involved a lot of reading of body cues (cues I still really didn’t have a grasp on) and figuring out exactly what was going on in the mind of my son in terms of processing.

I’d never really heard of executive function prior to beginning occupational therapy with my son, and I struggled with understanding how someone who is strong on visual processing would still have trouble finding his way around a poorly designed worksheet, or how a child who could identify the scale degrees used in the school recess bell could be perceived as having an auditory processing disorder. The occupational therapy sessions were as much an education for me as anything they might have been for my son. Sometimes when my son was too tired for a productive session we’d pop him in an enclosed swing where he would happily recalibrate while the two of us talked ideas and explored the gaps in the current thinking in the world of OT for kids with autism.

Over the course of the past two years I’ve learned a lot about resilience, understood just how important emotional skills are in providing a foundation for any kind of learning. I really never thought about this before, possibly I never knew the first thing about the connection between emotional maturity and the capacity to learn. And I have an education degree and decades of teaching experience.

I learned a lot about teaching kids how to organise their thinking, how to understand how to plan. Or maybe more accurately, I learned a lot about the kinds of processes that model organised thinking, the kinds of activities that help kids develop organisational and planning skills. I’ve learned to recognise that what often looks like distractedness or disconnectedness or even disinterest is in fact an internal struggle to know where to begin, how to proceed, how to put into words an experience that is primarily emotional, or textural, or visceral.

I learned that I can actually draw, but that it takes an extraordinary amount of concentration for me to be able to think through the process of putting my ideas into a visual format; this whole bit of my own education was completely absent, and I struggle to think about how to represent without words the concepts I so easily put into them.

I explored my own childhood experiences and used them as a template to compare with the experiences of my son; how much he reminds me of me, how much our experiences deviate.

I cried the whole way home after our first occupational therapy session after my son had come off the medication his paediatrician had prescribed, and which my husband and my son’s school had been so keen that my son be on. Without the medication my son could think clearly, could plan, could process. His extraordinary progress suddenly looked to be on the verge of an extreme and unpredicted acceleration. The medication had been creating many of the superficial manifestations of autism, not reducing them.

My son’s occupational therapist would reassure me that my decisions (which were often not supported by everyone in the family or at the school) were the right decisions – she approved of my parenting at a time when the messages coming at me from nearly everywhere were that if only I had parented differently my son might not be the way he was. It’s hard to express the depth of gratitude I feel for this weekly validation. I had already almost completely lost myself in the miasma of sleep deprivation, worry, blame, and sheer physical exhaustion that comes with having a child so far outside the bell curve that an autism diagnosis arrives as welcome news. I credit my son’s occupational therapist for me being able to retain what sanity I did during the past two years.

At his occupational therapy sessions my son would laugh, would joke, would focus, would yawn, would arrive and leave with a twinkle in his eye, would have special things he wanted to do, would experience pride in his accomplishments, would experience exhaustion with being made to think so hard, to push beyond what he had done before. There were melt-downs. Every week it felt as if the therapist, my son and I were each learning as much as each other, each of us about different things. To have an occupational therapist who is addressing the reality that she sees rather than a checklist of symptoms or problems she expects is a gift that requires high levels of intuition and experience from the therapist. We have been so very lucky to have such a therapist.

But today was our last day.

Our extraordinary occupational therapist has decided to close her practice. I’m not exactly sure what she’s going to do next. I’m sure it will be amazing, whatever it is. But it won’t be working as the guide we’ve come to rely on over these past two years. I know she’s making the right decision, not just for her but for the children and families she works with as well – if she needs to be doing something different we won’t be getting the kind of care she once was able to provide, and she’s made the ethical decision to not try to do things half-heartedly or without being able to be present in the kind of way this intense work requires.

My head is quite capable of acknowledging and accepting all this.

But my heart is quite entirely broken. Part of it is about gratitude, but part of it is about fear. How do we possibly keep on building this wonderful life without the support of the one person who seemed to get it right from the start? Who didn’t seem bogged down by a diagnosis? Who was responsive to my son’s weekly development and our family’s domestic priorities?

So I’ve spent the afternoon more or less in tears. They’ll be gone tomorrow, but for today I just needed to grieve. Someone unbelievably wonderful was a part of our lives for the first two years of this journey with this diagnosis, and now she’ll be a part of just the first two years, no longer a part of the team, no longer a participant in the building and holding of a memory of my son’s development. From tomorrow I’m more alone than I’ve been since the first part of 2012, and I can hardly breathe thinking about what that means.

And a deep breath now is exactly what I’m going to need.

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