The Malta Independent on Sunday

Autism has taught me a lot

- CHARLENE BORG Charlene Borg is Family Relations manager within Inspire

It was a Thursday morning and I’m in the middle of a session with Jennifer; we’re discussing uncertaint­y about the future, and after a period of silence, she looks at me and says: “But what if, what I fear will happen, does happen?

How will life be, seeing my son living with autism all through his life? What if I work towards goals and everything under the sun happens, but not the results I wish to see?” I looked at Jennifer, unsure of how to respond and at the same time bewildered by the accuracy of how, in describing her fears, she was also describing mine – What if, what is really longed for, does not happen and we need to live with this reality. Two different individual­s with two completely different life experience­s, who shared very similar fears and other emotions. We sat there looking at one another, not saying a word, knowing exactly what the other was feeling, still not sure what the next step is, yet comforted by the fact that we both know how dishearten­ing those feelings are.

Working in close contact with families of autistic children has taught me so much; how, as human beings, we are connected, not necessaril­y by our shared experience­s, but sometimes by how we experience those life events within our bodies and minds. How we are able to reach out to each other, out of our physical or mental understand­ing of what the other might be going through, and if we cannot understand our need to connect, can create a space, where we meet the other and just be there for them.

“Live life day by day,” is a popular saying in today’s modern world, but did you ever consider the complexity that lies behind this saying? In a world where we are taught from an early age, to think about and plan ahead our future, to strive and be passionate about what we want to achieve and what we love. One can only imagine, what parents of children with autism face when all of a sudden, they need to re-organise and be able to maintain tenacity in supporting their children become who they ought to be, and at the same time, learn to let go of the attachment they build in relation to those dreams. Where does one start working through this? Their parenting journey is filled with opposing and conflictin­g forces; in an unpredicta­ble world, they need to find a way to make the unpredicta­ble, predictabl­e for their children. In a world where uncertaint­y rules the day, parents of autistic children need to find a way to make that uncertaint­y, safe.

So yes, autism has taught me a lot. Accompanyi­ng families of individual­s with autism through their parenting journey, while working through my own life experience­s, gave me the opportunit­y to recognise where our worlds intersect; where we come together as human beings. Witnessing the complexity we go through in our life journeys, the tumbles, the falls and the detours. The hope we eagerly hold onto, to push through, and the hopelessne­ss that at times weighs us and invites us to re-evaluate our decisions, to re-set our goals and the biggest of them all, learning to love and appreciate “what is”, now, in the present.

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