Recently I visited Aless and Ethan after leaving London in July. I had missed being part of the unfolding of their lives, but looked forward to being reacquainted. I met Aless and Ethan back when they were in the challenging process of moving home. Ethan was a wild child with much unpredictable energy, and could be really challenging to be with when he was distressed. Aless and the late Coco really helped me understand how to relate skilfully and receptively to Ethan, and to keep in mind that there is no ‘right’ way to be with Ethan because like all people, labels are not representative of the person. Often to the contrary, they can sometimes be damaging and reduce the person to a set of behaviours.
Despite all my experience with children with Autism, I’m not even sure how I feel about the word, if it is always necessary or supportive. I guess what matters to me is that the use of terms like Autism spectrum disorder be used lightly so that the characteristics of the individual can be recognised and valued, as tending to these can be really helpful in wellbeing and development. But this is a question that has no fixed answer, and requires that the unique experiences always be taken into account and honoured. I learnt this through my time with Aless and Ethan, through sharing past experiences, as well as Ethan’s intuitive ways of relating, all towards building common understandings.
With the support of Aless slowly I learnt to listen to what Ethan communicated, or didn’t communicate, and to appreciate the uniqueness of his language and interaction. Once this openness and receptivity was established, we began to build a co-supportive brotherly friendship. We would go on long treks through Hampstead heath park, bracing different kinds of weather, with Ethan free to move through the world in the way he wanted to.
Of course, boundaries were necessary. But to maintain the openness and receptivity of our relationship, it was important that Ethan was given the space and opportunities for his development at this age. Understanding when and what boundaries are needed is something I don’t think I can fully appreciate without being a parent. In regards to this I have much respect for Aless, how she has managed to maintain such positivity and curiosity in spite of all the health hurdles she has faced, both her own and Ethan’s.
So as well as developing my own unique partnership with Ethan, it was a real pleasure to be witness to the relationship between Ethan and Aless, with all its nuances. Not only in the roles of parent and child, but as two people with a deep understanding of one another. And yet, it was clear that both were growing and changing. During my time with the two, Aless started Functional Food from her Kitchen. Here I could say that the oven became a third member, working as tirelessly as Aless. I helped however I could in this process (mainly by being a grateful test subject for all kinds of wonderful Nono treats - truffles, crackers, bars) - tastes so unique that I have no food to compare, only places and experiences come close. Now my path has taken me elsewhere, but Aless and Ethan still have a dear home in my heart and are never distant to me.
Thanks very much for everything, until next time
John